Just back from a week in southern Spain with my baby sister, who lives there, and have come down with a flu virus (probably caught on the plane as it couldn’t possibly be my beautiful little nieces fault, seriously how cute are they?)
It means I’m on my second course of antibiotics in 6 weeks (the first was for my ear infection in Courchevel, both viruses contracted while travelling – not a good sign).
I’ve also come home to bad news from another family member whose mother has just had to have emergency surgery to deal with aggressive liver cancer. Thankfully it looks like they’ve got it all but she has a long road ahead. My relative said that she’d gained strength from reading my blog and the positive outlook I have but it made me realise this has so far only reflected a brief snapshot of the four years I’ve spent fighting this disease.
It’s been quite the rollercoaster and one familiar to those on the same journey dealing with this and other incurable cancers – periods of fear, despair, remission, treatment decisions and hope so this post is going to reflect all that. I’m 4 years in and not a superhero – I’ve had ups and downs and I want to make sure other patients know there’s no right way to fight, grieve for what we’ve lost or work out how we can get our lives back. I needed control and, being a journalist, I found it in information but we all deal with things differently.
I’ve gone back to my emails/messages with friends from the time of my diagnosis and then followed my story on the CLL Forum, which I discovered 18 months after diagnosis and 2 months after completing chemotherapy. I’ll add all the posts I’ve contributed on that on my own thread.
I would highly recommend this forum for any other CLL patients – the people on there really have saved my sanity and I want to thank Steve, our primary moderator and a fellow Aussie, for all his hard work on it plus my friends Chris, Pat, Lynn, Wup and Dave in particular (there are a lot of good people on it, you’ll see more names below – online communities with rare diseases are just so invaluable and as I read through all the support I’ve received over the past few years I was so sad to see the names of those we’ve lost). Here’s the link http://www.cllforum.com/recent.html
Please note I’ve left some of the terms in without explaining them – the most significant one you need to know is Richters – an almost always fatal transformation to an aggressive lymphoma which occurs in 15% of cases of CLL and has been the sword of damocles for me and one of my biggest fears. MRD is Minimum Residual Disease – the lowest levels of detection for my cancer and we’re all aiming for negative results as that ensures us longer remissions. Anything in italics is my present day comment on these posts.
20th December 2011 – day of diagnosis – email to my parents and four younger sisters after calling them all – one of my first thoughts was how am I going to tell my Mother?
Hi guys. My specialist said not to use google and gave me this really good booklet the leukaemia foundation has put together called “understanding chronic lymphocytic leukaemia” and there’s a PDF to download on this web page http://www.leukaemia.org.au/web/aboutdiseases/booklets.php It answers loads of questions – having done google myself now (you know I’m rubbish at following instruction) I can see that the best chance for a long term cure is a stem cell transplant from one of you if you’re a match – sorry girls. Good news is it sounds less painful than a bone marrow transplant but bad news is they won’t offer it as an option unless the CLL becomes more aggressive and doesn’t respond well to chemotherapy, which is a shame as it actually has a better success rate in patients who haven’t had any prior treatments. Unfortunately it also has a high mortality rate (around 30% I think) so they won’t go down that route just yet. Hey ho at least there’s some prospect science may be able to overtake the disease and you’ll all be stuck with me for years to come (how little did I know they were already on the case – ABT was already in clinical trials at this stage). Hope the booklet answers questions for you. I’m getting quite a list for next time I see my specialist and thanking my lucky stars my GP picked this up and referred me to her. Love you, Debbie xxx
12th Jan 2012 – email to my family (3 weeks post diagnosis)
Middle of the night, sleep is for winos (sic – I meant wimps!). Thought I’d fill you in after my latest specialist appointment. Things went well. It’s early stage CLL, but stage 4 SLL – it crosses the line between leukaemia and lymphoma hence the two different staging systems and makes me one in ten million in Australia! I don’t have to start chemo for two months, at my request, so I can get the kids settled into school and get work sorted before I start getting sick with 6 months of chemo.
Apparently delaying for a few weeks won’t affect the response to treatment which will get worse as the 6 months goes on. Got to remember this when it starts getting hard. They’re going to treat it aggressively and things, as long as it responds (they’re still waiting for my chromosome test to work out how it might respond), I will get a decent remission of 5 to 8 years, after which they will do a bone marrow transplant as a second treatment and potential cure, as I’ll still be young (if mid forties can be considered young!).
I’m relieved and feeling much more positive. I went back to work this week and it really helped change my frame of mind. Sally had signed me off for 6 months and I went in to give them my sick note but logged onto the computer and Nicole made me laugh for the first time in 2 weeks. I forgot about cancer for 5 minutes and thought it would be better to work than not to for my mental health (I’m not sure my colleagues will agree!).
They’re also looking at putting me on a clinical trial of a new maintenance treatment after chemo to prolong remission times and, if I get into it, I will go under the care of one of Australia’s leading experts in this disease – Dr John Seymour at the Peter Mac which is a public hospital so should reduce the out of pocket fees a bit. My haematologist Melita Kenealy is finding out more about this before my next appointment on the 7th Feb.
I have red cross forms for you all. They test me first then you guys get tested – it’s a simple blood test which is good as a bone marrow biopsy wouldn’t be on my top ten things I’d ever wish you guys to have to have.
Next thing to focus on is the chromosome results (I think she’ll call me with these) which will give more accurate details of prognosis and response to treatment. Basically I want anything other than the one which has a deletion of the 17p chromosome so if you could all pray for that I’d be most grateful. Love you all heaps xxx
4th Feb 2012 – email chat with my friend Candice
I will still need chemo ahead of either a BMT or stem cell transplant (subsequently realised these are the same thing) – is there a better option than FCR? I have a horrible strep throat infection, came on suddenly overnight. I’m seeing Lydia at 1030 to get antibiotics.
7th Feb 2012 – email to my family
Hi guys, My latest specialist appointment was fantastic this morning. My initial cytogenetic results show the leukaemia is not aggressive and I don’t have any major chromosomal defects which means I don’t need to rush to chemo. Also all my healthy living seems to have paid off (am growing and juicing wheatgrass and eating all organic, have given up coffee and am treating myself to only an occasional glass of wine when I really feel I need it – like last night when I was worrying about today’s appointment!).
My Dr thinks the leukaemia may in fact have stabilised which means it’s not progressing any further at the moment. As CLL is not a type they can cure they’re prepared to monitor me closely and only move to chemo when it progresses. It’s called watch and wait. It’s also a weird type that can be made more aggressive by chemo so they want to hold their firepower until it’s needed.
They’ve also approved me for a clinical trial which I will got on after chemo which is designed to slow the progress of it coming back and give me longer to sort the blood test out for bone marrow matching – it’s a version of thalidomide now called lenolidomide. I’m stoked as I was pretty much geared up to start treatment straight away and was fearing the worst (a bad version of CLL, 17p deletion it’s called, gives you two years max even with chemo). I’m hoping I can stay healthy, albeit with a few lumps everywhere (at the moment all my lymph nodes are affected) and stop it progressing for as long as possible. I think going back to work has been the best decision I’ve made. Might even go back to the gym too (but don’t quote me on that!). Lots of love, Deb x
8th July 2012 – email to my family
Hi guys just wanted to update you all on my two specialist appointments this week. Firstly it’s been two months since I saw Melita and had blood test results which is the longest I’ve gone since been diagnosed 6 months ago. There’s been very little change. My Absolute Lymphocyte Count (white blood cells) are at 8 but I’ve got a cold and that can raise them a little as it’s the white blood cells that react to infection (hence swollen glands etc) – it was at 4 when I was diagnosed so has technically doubled in 6 months but it is still not that abnormal (you can be an 100 and still not need treatment). Melita was happy and doesn’t need to see me again until September. She also said that the transplant team at the Royal Melbourne would be getting in touch with Jenny and I to organise further testing (I’m thinking a girls long weekend is in order!) – the main surgeon has only just returned after a 6 months secondment and there’s no urgency with me at this stage.
I also saw Dr Constantine Tam for the first time this week who specialises in CLL. He said I’m not really CLL, more SLL and wouldn’t qualify for a lot of the clinical trials that are going on here – he said SLL is a lymphoma which is the same disease but lives in my lymphatic system – eventually it will infiltrate my bone marrow and I’ll become more leukaemia.
He said my genetics are poor and put me in a higher risk category so it was good that I have a sibling match as that is still the only potential long term cure. Having said that he said unpublished data from the US shows they have technically cured 30% of CLL patients who have mutated genes with the chemotherapy regimen called FCR – Melita wants me to have that when I need it. He has ordered a mutation test which I’ve now taken and will tell us if I’m mutated or unmated (fingers crossed I’m mutated as that has a much better survival rate and you can go years without treatment (nb – the test later came back that I was unmutated).
He thinks I’ve probably had this a long time and was positive about the new drugs coming along – he thinks within 5 years they won’t need to use chemotherapy at all for this type of blood cancer (which is good as chemotherapy can further damage you and as you all know I’m pretty terrified it will leave me worse off). Anyway that’s where we’re at – I’m still lumpy but not heavily diseased according to Con and it’s obviously slow. He says my immune system is keeping it at baby at the moment and I need to keep looking after it with all my juicing etc so it can keep up the fight for as long as possible. That’s it from me for now! Love you guys xxx
4th Jan 2013 – message to my family on messenger
Had my hair done today and couldn’t fit my neck in the basin thing – then they put me under the dryer with a toner on and my hair up and I looked like one of the fat headed Americans from the Wall-E movie, time for chemo (my sister Emily said I looked like I’d swallowed a boomerang in this pic, it has actually shocked me to see it again, this was when I felt like I was being strangled the most)
9th Jan 2013 – message to my sisters and their friends on facebook
Thanks girls I woke up to a ton of inbox messages and couldn’t work out why everyone was messaging me – then I looked at my timeline and saw all you guys in blue! Love it, you’re all too special (and not in a white coat needing to be locked up kind of way!). I’ve told the girls I want them to buy you blue shots next time they see you. Seriously thanks means a lot. Day 1 of chemo went really well. No horrible side effects so far, but I am in dispute with the nurses about whether I’ll lose my hair or not – I’m not losing it all ok?! Will keep you guys in the loop. Love you lots, Debbie xxx (I was actually quite cross with one of my sister’s for sharing my condition on Facebook, believe it or not I’d been keeping it private but she was only trying to help and I realise that now – sorry Nicola!)
16th Jan 2013 – message to my family on messenger
I get both chemo drugs and the rituximab together on the 6th feb, then just the chemo drugs on the 7th and 8th. Gives me a 3 week break now and a 25 day break at the end of the next cycle. Yay! Felt a bit uneasy earlier in the day though when the nurse setting me up asked if I was the girl who had had the severe reaction to it last week…gulp “no this is my first time!” but all I got was a slight scratchy throat. I feel a bit invincible but don’t want to tempt fate
30th Jan 2013 – Post of the ACOR Listserv
This is my first post to the list but I’m an avid reader. I was in a similar position to you but had only been in Watch and Wait for a year after diagnosis in December 2011 at the age of 38 before the need for treatment arose. My ALC had been doubling every three months and doubled in a 4 week period in December. I had bulky lymph nodes in my neck, arms and groin which were starting to become constrictive. I also had night sweats and fatigue so my Haematologist here in Australia said I couldn’t delay treatment any longer.
I had really hoped a stage 3 trial of ibrutinib would have been available for a chemo naive patient such as myself in time to avoid FCR but alas I had to begin in January and I just wanted to reassure you that this has been amazing for me. My lymph nodes are completely normal, my ALC went from 43K (it was 4k at diagnosis as I was SLL rather than CLL at that stage) to 0.6 in two days! I hadn’t even realised how ill I was feeling until I started feeling well and could move my head properly again. I’m 3 weeks out from my first cycle and feel like a new person. I had no side effects from the treatment and have worked all the way through (apart from infusion days) and have responded so well that my doctor is now talking about me perhaps only having 3 or 4 cycles (depending on a Bone Marrow Biopsy after the 3rd cycle). I’m unmutated with del 6q (intermediate prognostic marker) and am being monitored by a transplant team as that is probably going to be in my future (my sister is a match) but if FCR gives me a decent period of remission and allows me to have the energy to keep up with my 8, 6 and 3 year old’s then I’ll be very happy indeed. I said to my Dr if I’d known I was going to feel this well before starting treatment I wouldn’t have worried so much or requested to delay it, she said that is quite a common reaction with CLL and FCR.
I know I may not continue to have such an easy run but wanted to reassure you that if the Dr’s recommending it, it’s probably the right time and with this disease it seems timing is everything. Good luck!
May 11th 2013 – first post on the CLL Forum – all other posts from here are from that unless otherwise specified
I only found out about the forum on a support group phone call organised by the Leukaemia Foundation here in Australia and it’s been an invaluable resource so thank you to the moderators and contributors for all you do.
My story is I found a lump in my neck in March 2011, 3 months after being struck down with pneumonia and feeling pretty unwell I went to the Dr.
He ordered blood tests and an ultrasound on my neck, all of which came back as normal so he pretty much sent me away and told me not to worry. I was so relieved.
In December 2011 my 2 year old was unwell so I returned to my doctor’s practice and saw another GP who checked my records while I was there and asked if the lump had gone away. It hadn’t and there were quite a few more of them in my neck.
Within hours I was in hospital seeing a haematologist and having a battery of tests. My Complete Blood Count was completely normal so, again I was told it was 99% likely to be nothing but, given it was so close to Christmas and I had 3 children under 7 my specialist wanted to be sure so I had a lymph node biopsy.
I got the results 3 days later with my 2 year old sat on my lap. I was so sure it was nothing but when I was told I had an incurable form of Leukaemia (and at this stage I was Stage IV Small Lymphocytic Leukaemia) I was devastated.
I had a Bone Marrow Biopsy (BMB) which showed 19% infiltration and my FISH results gave me the unusual del 6q as my only negative marker (subsequent FISH tests have also discovered nothing else).
I was having night sweats, had lost weight and my lymph nodes were growing rapidly but it still took 4 months for my Absolute Lymphocyte Count to get out of the normal range but when it did it started doubling rapidly.
From October 2012 my specialist started pushing for me to start FCR. I was desperate to put it off but only just made it through Christmas before I was starting to feel really unwell and couldn’t go without it any longer.
FCR was the best thing that has happened to me. I had 3 rounds, had no side effects, carried on working throughout and my lymph nodes shrunk immediately. I was blessed with a sudden return of energy which made me think I had probably been unwell for years.
I am now MRD negative and have stopped treatment as I am unmutated and my Drs want me to have a transplant when the CLL returns as they believe this is my best option of a long term future and they didn’t want me to have too much toxicity. My sister is a perfect match.
I am under the care of 3 wonderful doctors at 3 hospitals here in Melbourne. My regular haematologist Melita Kenealy who I see every month at Cabrini, a CLL specialist – Constantine Tam who is at the Peter MacCallum Hospital and my transplanter, David Ritchie who is at the Royal Melbourne Hospital.
I feel very lucky despite having CLL hanging over me. It has changed my perspective on the world and I cherish the time I have with my family and friends.
I’ve always been the type of person who lives for the moment and having cancer has been an amazing experience. I think it was Brian Koffman who said if it wasn’t for the downside of cancer everyone would want it.
I’m looking forward to getting to know you all.
Attached Image (viewed 1760 times):
I feel funny when I see this photo – it was taken just before I was diagnosed and I was doing a talk the other day for a group of scientists involved with cancer research and said this picture almost defines my pre and post cancer life. I had the disease when this was taken but didn’t know it, my whole life was turned on its head not long after…I look so happy, young and blissfully unaware.
May 15th 2013
Thanks everyone, it’s taken me a while to get to the forum but it’s really helpful. Yes I’m in Melbourne Phil – looked at doing the local support group but unfortunately it’s in work time and I’m lucky enough to still be working.
Yanni I did get my vitamin D tested before I was diagnosed (not something you normally worry about when you live in Australia) and it was through the floor – almost no levels whatsoever. One GP (not one of my mainstream gang) put me on 10,000 iugs of vit D3 and I haven’t been very religious about taking it but will now I’ve read more about it on the forum so thanks for that.
Sadly I think my markers are such that I do have an aggressive form of this disease…always willing to look at alternatives but I did go slightly too far after diagnosis with changing diet and virtually living on raw food and juices for 4 months after diagnosis and it didn’t make any difference to the progression – just left me feeling miserable!
I try to eat well and look after myself but have to say chemo is by far the best thing I’ve done. I was terrified of FCR but it has changed my life for the better – now that I’m in remission I will try to stay healthy (and take my vitamin D3) – I drink a lot of green tea too but believe this may all have a better impact on those in the early stages or with a more indolent form of CLL.
Next Bone Marrow Biopsy for me on July 3rd – my 4th in 18 months – I’ve given birth 3 times with no drugs but boy do I make them drug me up for them!
Thanks for the warm welcome – I hope you’re all feeling well today.
20th May 2013
I started FCR in January and had 3 rounds which finished at the beginning of March. My specialist was under the impression I was MRD negative so cancelled any further chemo. It turns out I was MRD neg in my blood but not my bone marrow which still showed trace amounts of CLL in mid March – enough for me to MRD positive (bummer).
This morning I conferred with Constantine Tam who is my local CLL expert here in Melbourne – he thinks I should complete the last 3 courses of FCR to get the best remission possible (despite it now being such a long gap between treatments).
Both my regular haematologist and the transplanter who are also looking after me (I know I’m a bit greedy when it comes to the specialists) both want to protect my bone marrow from further damage and leave well alone until I show progression when they’ll put me straight to transplant (my sister is a 10/10 match). They are intending to give me BMBs every 3 months for the next year and my next one is on 3rd July. I was incredibly bulky before treatment and presently have no enlarged lymph nodes.
Given my age (38) and the fact I have aggressive disease (I’m unmutated with del 6q which is 1 down from 17p in terms of prognosis and I required treatment within a year of diagnosis) I had a wonderful response to Fludarabine.
I feel really well now and would be interested to hear your, more seasoned, thoughts on the next step.
26th May 2013
To answer your question John yes FCR was frontline treatment after a year of watch and wait. I knew there was a diasagreement between my 3 specialists before starting treatment as they had a conference and my primary carer gave me a heads up as to the three opinions. I went with the majority which was to aim for 6 cycles but stop at 3 and have a BMB to see how deep it was getting.
Both my primary doc and transplanter really wanted to stop at 3. The results came back on the day the 4th cycle was due to start and my dr was unfortunately told by the lab that I was MRD negative (as it turned out that was peripheral blood results not the bone marrow which was still positive).
Constantine Tam said the chance of being MRD- in the bone marrow is only 44 percent after 6 cycles so he really wants me to complete the last 3 cycles. I’ve now had a 3 month break from chemo and feel fantastic (best I have for years). My primary haematologist who stopped the chemo (and says she would still have stopped even if she’d had the correct results) and the transplanter now want to monitor me for relapse and move to transplant at the first sign that is happening but Con reckons I can get into a BTK trial when that happens.
I’m pretty confused – I know there are lots of options out there and it’s pretty hard to get it wrong but I’m really only just over a year since diagnosis and I seem to have hit a tough decision already! I have to say when it comes to my 3 Drs I really like them all but it was the transplanter David Ritchie who was the first to make me feel I could get through this and he could cure me if he got me at the right stage. It’s a toughie!
26th May 2013
My ALC was only 4.5 at diagnosis (ie completely normal) but it started doubling rapidly first on a monthly basis and then by Christmas (12 months on) it was 48. But it wasn’t my bloods that were the issue as much as my symptoms – my lymph nodes started becoming massive everywhere – up to 10cms in my armpits – my neck ended up huge and was restrictive (my sister said I looked like I’d swallowed a boomerang!) and my groin and abdomen were compromised too.
I was getting drenching night sweats, fatigue and was starting to get repetitive infections which weren’t responding to antibiotics. The weight was coming off too (wish they’d let me have a bit longer so I could have lost some more!). It all happened very quickly and all 3 Drs agreed it was time to start and that FCR was the best thing for me (I was pushing for BR).
I held off treatment when I was finally told I had to start for about 6 weeks to get through Christmas but it couldn’t have started soon enough to be honest). I think the aggressive nature of it is what is pushing 2 of the 3 Drs towards transplant an early. I went from SLL with only low levels of CLL in my bone marrow to 70% within 6 months. I’m unmutated and this del 6q business is still a bit of an unknown (but not a good marker!).
I do feel well cared for despite the results mix up as I was over the chemo (despite how much better it made me feel) – I just wonder if I do the final 3 cycles if it will give me a better remission. I think they may be saving any more chemo for pre transplant conditioning.
I keep prodding myself as I’m sure it’s coming back but they tell me it will appear in my bone marrow way before it appears in my blood or lymph nodes so that’s what they’re focusing on. Next BMB is July 3rd and results on the 10th.
It’s a rollercoaster!
8th June 2013
Just a quick note for the Aussies among us.
I had very little life insurance – just hadn’t considered it (now know that wasn’t clever) but Virgin Life here has a policy for those WITH Pre-Existing conditions. The catch is if your pre-existing condition kills you within 5 years of taking the policy out your family only receives your monthly payments back (I see it as almost forced savings in that case). After 5 years even if the CLL gets me (or any other health condition for that matter) – the policy pays out in full.
Maximum is $750,000 and it only costs $100 per month which I think is pretty reasonable given I took it out post diagnosis with declared CLL. Wish I could find an equivalent income protection policy!
NB – I just have to survive until April 2017 for the policy to be able to be enacted – 4 years ago that felt like a long shot, now I’m more optimistic. One thing about not having income protection is that not working wasn’t really an option and this has probably been a blessing as my life, outside of appointments and treatment, has been pretty normal and fulfilling.
10th June 2013
It’s funny John. My husband is 63 and very healthy (his father is a very healthy 90 year old) but it would cost far more to insure him than me and I have the worst genetics ever. Lots of cancer on my family’s side.
It all makes the 23 year age gap irrelevant. By the time we had children my husband was retired and I was the breadwinner – it really never occurred to me that I would be the one who needed cover. The sad fact is that post diagnosis it’s changed everything in terms of securing the kids future (my youngest is only 3 after all). We’ve now entered the private school system because I want the option of boarding school when they’re older if we’re both not around and all that costs money which I’d never factored in before.
One thing to come out of this is all my friends in their late 30s are now taking out insurance policies – I had been offered an income protection scheme before I diagnosed which I didn’t take out because of the expense (I opted for private health instead after my daughter had to have cosmetic surgery on her face after falling off her brother’s bunkbed which was a major thing once I needed treatment). When I double checked the policy post diagnosis it wouldn’t have covered CLL anyway so really feel there are a lot of loopholes out there.
I’m hoping if I do have to go down the transplant route and have problems as a result I may be able to access the Total and Permanent Disability policy I have in my superannuation fund. I didn’t even know I had this and am very thankful to be living in Australia where this is part of the pension scheme. It’s not a vast amount but would certainly give us 5 years breathing space if we needed it.
6th July 2013
Hi all just a quick update. I had my 4th bone marrow biopsy in 18 months on Weds and still have an anxious few days before I get the results at my appointment on the 10th July. It’s been four months since chemo stopped. I’m feeling a little tired and run down and have been picking up infections from the kids (on antibiotics again) so I’ve got it in my head that it will be bad news. Only been on this journey for 18 months and results have invariably been the opposite of my expectation so hoping that this will be the case next week too.
I’m normally first up for the Bone Marrow but this time was running late and got to hear the patient in the bed next to me getting his done and groaning all the way through it. I had no idea it takes 20 minutes – they always give me a slight sedative so even though I’m conscious and it hurts, I fall asleep afterwards and it only feels like it took 2 minutes. You can imagine how anxious I was by the time the Dr came to me. Highly recommend newbies try to be first on the list for this reason alone.
The Dr was the same one who performed my last biopsy and gave my specialist the results. He said that I was only just MRD positive and that if the results had been tested in any other hospital in Australia they wouldn’t have found the few cells they did. The result was 0.01 in 10,000 leukocytes which at least gives them a basis for what comes next. I’m not sure what to expect with the results. I imagine if it’s only come back a little they’ll let me go another 3 months until my September BMB in watch and wait. If it’s come back quickly that’s when the fun starts. Will have to decide between transplant and inhibitor trial so, no doubt, will be seeking your wise counsel in the wee small hours on here.
If it’s very good news (ie no movement or an improvement) I’m planning to take the family to Japan over Christmas for a skiing holiday and a trip to Disneyland Tokyo – we went to LA just before I was diagnosed and we’re all hooked!
I hope you’re all having a good day.
11th July 2013
Got my results yesterday – there’s been no movement in the 4 months since I stopped chemo – the MRD results are still 0.013 and I’ve been put onto bi monthly checkups, the September BMB has been cancelled and I don’t have to have another one until December. Am very happy indeed!
11th December 2013
Just got the results back from my 5th BMB in 2 years and 3rd this year and it’s not good news. I’m starting to relapse only 10 months post FCR which is not a good sign of things to come. My Leukocyte count has gone from 0.012 six months ago to 0.48 this week. Back to the transplanter in January but I am going to explore the ABT 199 clinical trial which I would now be eligible for. Two of my Drs still favour transplant because of my age and aggressive nature of my disease and my sister is a good match so lots of reasons to be hopeful but still upsetting as I come up to my 2nd Canciversary next week. Definitely not an indolent disease for me.
14th December 2013
Thanks Lisa, Cam’s journey sounds very similar to my experience so far and I’m sorry your family is going through the same worries as mine. I have to say I only started getting hopeful that I’d live to see my children grow up after meeting with my transplanter about 4 months after diagnosis. He was my 4th opinion and was the only person who used the word cure. It’s a percentages game and I’m not much of a gambler but I felt a whole lot better when they discovered my sister was a match.
I also think the Drs knew my disease was going to be aggressive. I had an early FISH test which only showed normal karotype and del 6q (common with SLL) but I became bulky very early on in the disease and really didn’t have much of a watch and wait period. When they were looking at chemo options for me, my transplanter pushed for me to have FCR over BR because he said they would know much more about my disease by how it responded to FCR.
At no stage did he really let me enjoy my remission. I saw him in July and was pretty euphoric that it looked like the low levels left after chemo had remained stable but he told me not to get too comfortable and that I would pretty much be in his hands soon enough. Sad to say he was right but it does give me faith that he really knows what he’s talking about when it comes to CLL.
Your husband’s ALC levels are still really low so I’ll keep my fingers crossed for you that he remains stable enough for one of the new therapies to become more established. I feel like it’s all on the cusp and I may just miss out because transplant is seen as a better option for me than a drug trial.
I’ll keep you updated.
Thanks for the message.
2nd November 2013
It’s Melbourne Cup carnival this week and it started today with Derby Day – I had the most amazing day and wanted to share a pic of me 8 months post FCR (I’m in the black hat) – I was on my feet all day and even hit the town afterwards. I love how Melbourne celebrates spring racing – if any of you get a chance to come here the first week in November is a fantastic time to visit.
14th December 2013
Thanks Pat – yup despite loving FCR, my disease obviously loved it too and I’m not going to be the poster child for long remissions from it.
I agree with you on the trials and Con Tam at the Peter Mac here in Melbourne is one of my Drs. He’d like me to go on ABT 199 at the Royal Melbourne, saying they’re having great results and if I become refractory to it or progress I can then go to transplant, which is entirely your point. My two other haematologists, one of whom is a transplanter at the Royal Melbourne disagree and say that they don’t want me to have any more toxicity as they fear a transformation because of the SLL nature of my disease and this could be the best window for a successful transplant. They also say that it would be better, despite the risk, to try to get the disease behind me so I don’t have to be on drugs for the rest of my life with the fear of the disease coming back.
I am seeing the transplanter on the 29th January and having a blood test in a couple of weeks to establish MRD in the blood as a baseline so I don’t keep having to have bone marrow biopsies which is a relief (at the moment my counts are normal although my ALC is still low at 0.8).
I am also going to ask for another opinion from John Seymour as I haven’t seen him yet (and I feel like I need just one more opinion!) but I ultimately probably going to have to make the call myself. I haven’t talked to the transplanter about ABT 199 since July so will be very interested to hear whether his opinion has changed with regards to this.
Thanks once again for your wise words Pat.
14th December 2013
Thanks Michael and Jan,
I really do hope transplant becomes an unnecessary thing. It seems so archaic just researching it, a bit like blood letting in the Victorian era – there don’t seem to have been many advances at mitigating the risk of GVHD either. It really does feel like Russian Roulette. The idea of putting CLL behind me though is so appealing – I’ve only been on this rollercoaster for 2 years and it sucks! Professor Hillmen is a great Dr, wonderful that you’re under his care. Thanks for the good wishes.
14th December 2013
Yes Fay, Wanda and Joe’s stories are all so heartening.
Brian has been very kind emailing me and I follow his blog. Despite my reservations I am optimistic because my Drs are. I was awake in the middle of night thinking of ways I can get through this – I’m a former BBC journalist and am thinking about making a documentary to chronicle the journey and hopefully help others going through it too. I know a woman at school with children my kids ages who died last year because she didn’t have a match and a haplo transplant failed – would be good to get more people to register as donors, I’m so grateful to have a match.
20th Jan 2014
Thanks Hillel, very kind of you to think of me.
I’m doing well. Still working full time but am starting to feel a little fatigued and am getting annoying infections again which have required antibiotics. I had an ultrasound last week which also showed my lymph nodes are starting to be infiltrated and I’m now waiting for results of a flow cytometry test on my latest CBC to see if MRD is now present in the blood (following it leaping from 0.012 to 0.5 in the bone marrow).
I see the transplanter on the 29th January and am expecting him to advise that I proceed to transplant in the near future. This was always the line he gave me that if I relapsed too quickly after FCR (he said within 2 years but it’s looking like I barely got 6 months out after 3 rounds) or if I didn’t achieve a deep enough remission, transplant would be the preferred course, particularly as they wouldn’t want me to get bulky before it. He also said he didn’t want me to be too heavily pre-treated (another reason why they stopped FCR after 3 rounds, and given my unmutated status, it was never going to cure me – I think the way my disease took off also told them it was aggressive and whatever remained would be likely to multiply quickly, hopefully I haven’t become refractory to Fludarabine).
I will be asking about the trials for ABT 199 and Ibrutinib as my regular haematologist is saying that, while she is adamant I will need a transplant, she’s still not sure of the best way forward from here. Hopefully David Ritchie, who is my transplanter and is also a CLL expert, will be able to share his thoughts with me next week. I will also be checking in with Constantine Tam before taking the next step. He favours me going on a clinical trial (my worry is my age, bulkiness and predisposition to Richters because of my “SLLness”).
The more I read about others who relapse early from FCR, or transform and don’t make it to transplant when they have a match like mine, the more I want to have the transplant earlier in the course of the disease rather than later – in fact the transplanter said he wouldn’t transplant me as “salvage treatment” because it would invariably fail so that is something I’m taking into consideration too. It’s the biggest risk assessment ever but if I am going to take the jump to transplant, it’s better I do it while I’m younger and healthy. Transplant is on the public system here so I’m also grateful to now be eligible.
Thanks again for thinking of me.
29th Jan 2014
Just a quick update on me. I saw my transplanter David Ritchie yesterday and he said I’m far too well to even consider going anywhere near transplant at this stage!
I had my best blood test result in 2 years (everything back within the normal range) and he thinks there could be a margin of error in my bone marrow biopsy result. He says I’ve had a really good response to FCR and, in his opinion, I could still be 2 – 5 years away from transplant.
Wow – had been totally gearing up for it after seeing my regular haematologist in December. Even bought birthday cards for the children until they’re 21 and started writing them just in case. It shows that it’s good to see a CLL expert. Feeling so much more positive. They’ll continue keeping a close eye on me but I now don’t have to go back to see him for 6 months.
I am so happy.
31st Jan 2014
Thanks JoAnn – I was balling my eyes out buying the cards and am still going to write them just have lots more time now (and the luxury of having foresight) – a former colleague with 3 children just had a heart attack and died at 41. He didn’t smoke and was fit. At least with CLL we usually have lots of time to prepare for the worst.
I think you’re spot on (as always) there Pat (re the fatigue being depression). I was mentally exhausted and wasn’t sleeping.
It was funny I got wind of my blood test results a few days prior to seeing the transplanter. My GP printed them off for me and I couldn’t believe how good they were – everything at the low or high side of normal (at the favourable end of each scale – low white blood count, high platelets etc). It really didn’t make sense that I could be heading for transplant.
I had waited 6 weeks after being told I was relapsing from my BMB to see the transplanter so had got myself into a state. Hindsight is a wonderful thing but I wished I’d remembered Brian Koffman’s mantra of not overreacting to either good or bad news and I might have fared better mentally over the past few weeks.
Hopefully I can put it all at the back of mind for a long time. I’m seeing my haematologist next week and will find out how often I’ll be having blood tests. I’d like to space out the BMBs a bit more (they’ve been every few months) and it really doesn’t help me if the results aren’t that accurate when CLL is at such a low level.
Hope you’re well.
5th Feb 2014
I asked my regular haematologist Dr Melita Kenealy at Cabrini here in Melbourne about the BMBs today and she agreed I don’t have to have any more for the time being. I had one at diagnosis just over 2 years ago, a second to confirm progression before treatment in December 2012, a third after FCR stopped 10 months ago and I’ve had two since (3 months then 6 months post treatment) which have shown progression.
Thankfully as of today I’m now showing MRD positivity by flow in the blood (0.09%) so they can use that as a baseline and stop the BMBs. She says at the current rate of progression it might be 6 months before they can give me an indication of when I might require transplant – she kindly appreciated that I have full time work and a young family and a timeline for treatment would really help as I have a heap to organise before I reach that stage (I know I’m lucky that I do have time to do this). Here’s hoping it slows down and something else might be a better option by the time the need for treatment comes along. My next appointment and blood test with her is in 3 months, unless I get symptoms which worry me.
Feeling in very safe hands. Thanks to all here too.
12th Feb 2014
Feeling very down tonight. Woke up this morning with lymph nodes raised all the way up my neck from my clavicle on the left side. Chain of 6 of them. Rang the haematologist who only saw me and examined me a week ago and went in to see her. They’re the size of tombolas which is something as they took about 6 months to reach this stage after I was first diagnosed. Had a blood test which showed ALC slightly raised but nothing else. She said it’s unlikely to be Richters but they are doing a notch test on my last biopsy – she said the way things are going they could biopsy another node now! She expressed slight alarm at how quickly things are taking off – she thinks it’s the SLL again but there’s an outside chance it could be a virus so leaving it a couple of weeks to monitor. I left her contacting the transplanter to activate my sister for further testing – seriously people??? I am so over this stupid rollercoaster.
14th Feb 2014
Thanks JoAnn and Rob, I’m sneezing my head off today and lumps now in my armpits and groin….hoping the sneezing means I am fighting off a virus, quiet weekend this weekend me thinks. Enjoy yours too x
19th Feb 2014
I had a stinking head cold start a couple of days after the lymph nodes came up and a week later I think I’m nearing the end of it. Feeling much better thanks.
Nodes are still up but am now hoping it’s just the virus rather than the SLL. Will know in 3 weeks when I have another MRD test on my blood panel.
One good thing is I think my immune system is pretty robust as I seem to have kicked this to the curb with only vitamin C and hot drinks (not bad for a year post FCR)…thanks for thinking of me – will let you know how the blood test goes.
Hope you’re both well too.
5th Sept 2014
Just had my 6 monthly review with my prospective transplanter (it’s actually 8 months since I’ve seen him because I went skiing instead of catching up in July!). I’m almost 18 months post chemo and my relapse has slowed to a negligible pace – my ALC is still only 1.7 and all my blood tests are within normal ranges. He now thinks it may be 3 years before I fall out of Complete Remission, maybe even longer. He asked how I was coping with the flu season and I did get the flu and beat it along with everyone else so it looks like I’ve recovered well from the FCR.
All this means that transplant is going off the table which is very exciting for me as I’ve been living with the fear of this pretty much since I was diagnosed and the disease took off and looked so aggressive.
FCR did it’s job and he says if I get through the next 6 months the next treatment will likely be a clinical trial on one of the small molecule drugs. I asked him about CAR-T trials and he says they’ll be starting here in Australia next year and he is now convinced they’ll replace allogeneic transplants.
Now to get back on with enjoying life and forgetting about CLL for a while longer. I’m so relieved!
Best wishes to all
18th November 2014
Just a brief update – had the results of my 3 monthly blood test and my ALC is still only 2.4, less than it was 6 months ago. All other tests in the normal range, I’m working full time and I feel so well. Don’t need to see my haematologist until the end of February now which means no bad news for me the week before Christmas (touch wood) for the first time in 3 years.
Dec 20 2011 – Diagnosed
Dec 2012 was told I needed chemo
Dec 2013 found out I was MRD positive and relapsing post FCR and headed for transplant – now know that it’s incredibly slow!
Hope everyone is well in the run up to Christmas.
18th Feb 2015
Had my 6 month review with my Prospective BMT Doc today and there was good and bad news. I knew I was getting sick again so it wasn’t a surprise to be told I’m now out of remission and needing treatment. My bloods are all in the normal range but I’m getting nody, have night sweats and am losing weight. Despite my ALC only now being 5.9 it’s heading in the wrong direction and I am predominantly SLL so it doesn’t show up in my blood until I get really sick.
The good news is that I’m 2 years post FCR so transplant can become the third carriage on the train rather than the second to use my Dr’s analogy. The first was FCR. He is now investigating clinical trials for me and there are a lot on offer to me given I’ve now relapsed from the Gold Standard. I rather like the look of the ABT-199 and obitunuzimab (you should have heard me trying to pronounce that while asking Dr Ritchie about it) – it’s not available in Australia so I’ll see what the alternatives are here before investigating whether it would be worth me trying to get on one in the US.
Given it’s only for 6 months I wouldn’t be averse to living stateside for that period of time and giving the children that experience depending on whether I could find the financial means to support us. A lot of research to be done! I’ve been anticipating this for some time and although it’s still disappointing I’m grateful I’m not being thrown straight into transplant as I wasn’t ready for that. Onwards and upwards.
18th Feb 2015
Thanks Lynn and Anna, yes there seem to be quite a few trials locally so, as much as I’d love to spend 6 months in New York or Colorado (skiing?!), I think there should be something here for me.
My Dr doesn’t want me on a phase 1 trial nor a randomised trial with a placebo involved – he said I need “the good stuff” – I wouldn’t mind having more chemo so the BR v ABT 199 Rituximab trial might be an option. I’d really like something that packs a punch with a novel therapy which is why that new one with ABT 199 and obitunuzimab appeals so much. It would be great to have 6 months of treatment and then a drug free period of remission but beggars can’t be choosers! So lucky we have options and brave souls who have come before us. Should know what’s available by the weekend. Sounds like he wants me to start treatment soonish.
By the way he had just got off a plane from the US and told me that there are early studies which show ibrutinib might have a role in reducing graft versus host disease in patients who were on it prior to transplant. He says it’s cutting edge stuff but exciting for those in the transplant world.
Have I told you how much I love David Ritchie?!
27th Feb 2015 – Email to Professor Thomas Kipps at UCSD
Dear Dr Kipps
I am a 41 year old mother of 3 young children, diagnosed 3 years ago with SLL based in Melbourne, Australia. I completed 3 cycles of FCR 2 years ago and have now relapsed. I never reached MRD- status. My FISH is being repeated but at the time of treatment my only cytogenetic marker was del 6q. I am unmutated with bulky disease and was referred to Dr David Ritchie at the Royal Melbourne Hospital who heads up the BMT program there at diagnosis. My sister is a match and transplant is still very much on the agenda for me but I’m now exploring clinical trials of novel therapies and this is Dr Ritchie’s preference for me at this stage. My disease is predominantly SLL but my ALC at time of treatment did rise to 46 with 89% infiltration of my Bone Marrow. I was quite sick by this time with some lymph nodes reaching 10cms. My ALC is currently only 5.9 so I have a bit of time on my hands (despite the emergence of lymphadenopathy and B symptoms).
I have booked flights to attend your conference at UCSD on the 23rd April and arrive from Australia on the morning of Wednesday 22nd. I was hoping I might be able to have a formal appointment with you for a second opinion while I’m there. I’m not averse to spending time in the US if I can get on the right clinical trial there (although there are some good options for me in Australia too, particularly with ABT-199). I fly out of LA on the night of the 23rd as I’m heading to Niagara Falls for the Canadian CLL Patient Conference on my whirlwind tour to gain as much information as possible.
I’m happy to go through the new patient line but believe your clinic days are Tuesday. Would you have any time on the afternoon of the 22nd or morning of the 23rd to see me? I would really value your opinion so could change my flights to the Tuesday if needs be. I will be self funding the appointment as my insurance won’t cover overseas appointments. Many thanks for your time.
2nd May 2015 – update on the CLL Forum
Well it’s been a while and I have so much to update so this might be a bit of a long post!
Firstly my latest FISH test came back just in time for my US trip and it showed that I haven’t had any clonal evolution that they know about since FCR so the disease coming backs looks pretty similar to that which I started with i.e. only del 6q (no 11q or 17p deletions in sight).
I saw Dr Kipps at UCSD last week ahead of the CLL Research Consortium’s conference – how lucky are his patients?! He blew me away with how amazing he is. I had the most thorough examination outside of a CT scan and he said my lymph nodes in my abdomen are now in the region of 4cms, my spleen is 20% enlarged and I have a node under my arm and one in my neck which are also 4cms – the rest throughout are less than that.
Dr Kipps thinks I need treatment soon but my bloods are holding up so he wouldn’t start until my immune system and my haemoglobin start dropping, my night sweats have stopped and my last CBC showed no change from the month before so I’m hoping it’s stabilising a bit. He has patients with nodes much larger than mine who don’t need treatment but says my disease is definitely on the move so it would be good to get me back into remission soon.
If I was his wife or mother (wish he’d said daughter!) he would give me HDMP plus obinutuzimab now to buy some time for me to access the best drug trial for me in Australia – he says there’s no way I can enter a trial in the US because if anything went wrong and I ended up in the system with a heart attack etc I would end up with a million dollar bill. He has given me the protocol and is going to email Con Tam to see if he might be able to give me that in Melbourne – he said if I can’t get Obinutuzimab I could get away with using Rituximab.
He was very optimistic for my future and the future for all of us and told me to steer away from transplant unless my disease transforms. He actually said he has had the best results from ibrutinib with patients with my prognostic markers, unlike FCR those of us who are unmutated do better on ibrutinib than those who are mutated.
That night I went to the CLL Society’s patient dinner and met Brian Koffman and heard Laura Cleveland speak – that was a real thrill. So that was day 1 in the US.
Day 2 – UCSD CLL Research Consortium – managed to miss the morning session due to stupid jet lag but got there just in time to hear Professor Gribben from Barts speak, he was fantastic – as soon as this session on clinical trials in uploaded on the CLL Society website you must all check it out. I had snuck into the back of the room and when he finished speaking he came and sat next to me. We had a good chat and he noted I was English, with a home still in the UK, and said he had trials open in London which I could access on the NHS if I was prepared to move back from Australia (this had not even occurred to me!).
We then heard from Drs Jones, Wierda Kipps and Castor all speaking on the novel therapies – such exciting research – and they kept talking of cures!
At the end of the day I saw Dr Wierda sitting at a table outside and went over to shake his hand (FCR had taken a bit of a battering from some including Dr Jones who said he no longer like it and when he left MD Anderson he had got off the KoolAid!). I told Dr Wierda FCR had saved my life as I had no other options two years ago and I had loved the quality of life it had given me so I wanted to thank him and MD Anderson for their work with it.
He invited me to sit down and then I realised Dr Gribben was sitting next to him so the 2 of them gave their opinion on what I should do! They asked what trials were available to me in Australia – they’re particularly excited about ABT-199 and Obinutuzimab and can’t believe it’s not open here – Dr Gribben then reiterated he would love to have me on his trial in London.
Of everything available to me they thought ACP-196 would be the best thing to try in Melbourne if I could get it. Day 2 done.
Day 3 – after an overnight flight from California (Day 2 just merged into Day 3!) I arrived in Niagara Falls in time for breakfast. Went and registered then sorted myself and joined Pat and the gang in the conference room. Pat had saved me a seat next to her (thanks again for looking after me Pat!).
The way the seating fell I ended up sitting right next to Dr Keating’s table and he noted the koala on my jacket and we got talking about footy etc, he’s still so Australian! After the morning session which was really useful I told him I’d had FCR and thanked him for that and I was now looking at clinical trials after being referred for transplant – he reiterated that no way should I be considering transplant without trying ibrutinib first and said that I could get this on compassionate access in Australia – he told me I should be under Constantine Tam’s care and to make sure I see him when I get back.
He said they’re all worried about the lack of access to drugs in Australia. It was fantastic to hear both Professor Hallek and Dr Keating present to the audience, well done to Chris, Pat and the organising committee for pulling this together. I had to sleep so managed to miss the rest of the day which was slightly crazy but look forward to seeing the uploads on the CLLPag website soon.
It was great to meet Chris and Chonette albeit briefly and Derek, who I think is on this forum gave me a cool T-shirt saying “Bad to Bone” CLL Patients Advocacy. It helped me to have the 2 conferences so close together but a day in between would have been even better – maybe next year you guys could make them a week apart so us internationals can still come to both but without killing ourselves!
What I took away from all of this is how desperately we need a patients advocacy group in Australia so I’m delighted to tell you that AussieNeil and I had an hour and a half phone call yesterday and have set up CLL Patients Advocacy Australia (I think should make this Australasia to include our kiwi and pacific friends).
Brian Koffman in helping us and we’re going to organise our first conference on the 6th September at the Hilton in Sydney which is the day before IwCLL starts. I have put a hold on the facilities and am hoping we’ll be able to achieve what you guys have in the US and Canada.
It would be a great opportunity to visit Australia for those of you who have it on your bucket list and airfares from the US are so cheap at the moment. Brian and I are skyping in the morning to sort some things out and I’ll be asking for help from you guys too! Hopefully the Leukaemia Foundation will help us with this.
As for me I see Con Tam on the 12th May and David Ritchie on the 4th June, depending on what they say I may then jump on a plane to have a formal consult in London with Professor Gribben.
I am adamant that the next treatment I have be the best I can possibly get and I am happy to campaign to make sure Australia patients have an equal right to access the therapies that our US, Canadian and British cousins have.
Still jet lagged but very happy I came and the kids were thrilled to see me so I’m pleased I squeezed it all in the week to make it easier for them – I only ended up in New York for 2 days and then changed my flights to come home earlier.
I told you it was a long update!
5th May 2015
Lynn I think you’re right about the journalism background -it just makes you cut to the chase a little bit more but, having said that, there are many others on this forum who have left no stone unturned in the pursuit of the best treatment.
I’ve had a few emails from people asking how I managed to get an appointment with Dr Kipps and feel a bit silly when I say I just emailed him. He has quite a few international patients so it’s always an option if anyone needs one of the best 2nd opinions out there. I hope all my fellow Antipodeans get to hear from him in September – we’re very fortunate with the calibre of Drs who have made CLL their life’s work.
12th May 2015 – email to Dr Melita Kenealy
Hopefully I’ll catch up with you next month but just wanted to fill you in on my whirlwind North American tour and I’ve just seen Con Tam to discuss clinical trials so I am now even more confused! Headline from what I learnt was:
Dr Kipps (UCSD): He was the only one I had a formal consult with (and the longest exam – apparently nodes are now 4cms in my abdomen and under one of my armpits and one point in my neck and my spleen is enlarged) – he wants me to buy time with HDMP plus O (or R) until I can get a decent combo trial in Australia – he says no urgency until my blood counts get worse and I start getting infections etc
Dr Bill Wierda (MD Anderson) & Dr John Gribben (Barts): Ended up speaking to them after one of the conferences and they both recommended ABT-199 plus Gazyva trial in London under Dr Gribben (6 months) – it had actually never occurred to me to go back to the UK
Dr Keating: Spoke to him briefly and he said I should get ibrutinib on compassionate access in Australia as I’m Relapsed & Refractory
Dr Tam: (I’m paraphrasing and this may not be what he said but this is what I just heard, hopefully he’s writing to you!)
Not good to live with low level disease with my markers – risk of Richters 15% (I said I feel well at the moment, the B symptoms have stopped and I’m steering towards not having treatment until you guys find something I’m happy with, reminds me of my pre-FCR mindset)
Doesn’t really like ibrutinib for me, lots of side effects and no deep remission – if no better option would look at its successor B something or other in a clinical trial which is opening soon (same as ACP-196 just different letters!) – risk of Richters still around 15% on the BTK inhibitors within first 2 years (if it hasn’t happened by then it’s unlikely to happen) and he said there’s no coming back from Richters
He has a trial of ABT-199 with ibrutinib opening for Mantel Cell Lymphoma and he’s hoping to be able to open it to CLL patients in 4 months (this would definitely interest me!) – he can’t get me on an ABT-199 trial and agrees that the one randomised against BR is not a good one for me
As I’m only 41 he still likes transplant as an option despite the mortality risk although Cart-19 trial will start at the Peter Mac in approx. 7 months and he’d hope I would qualify for that (I may need to be put on ibrutinib for a couple of months before)
Of all the trials currently available to me he was honest enough to tell me he likes the ABT-199 plus Gazyva/obinutuzimab option in London best and could see about getting ongoing ABT-199 for me eventually in Australia so I wouldn’t have to keep commuting to London to get the drug when the trial finished. He said I’m probably not sick enough to get on the trial yet though. I’ll get Dr Gribben to send me the protocol so I can go through it when I see you next.
Pretty depressed by all of it to be honest, having said that it was amazing to hear how many experts feel they’re on the cusp of curing CLL in the States so I’m trying to keep some perspective. I see David Ritchie on the 3rd June and will go with what he says. I’ll book in to see you for a debrief and get your thoughts on it all afterwards.
12th May 2015 – reply to an email to Brian Koffman
I’ve spent most of the day freaked out but I think that’s because Con confirmed what I suspected that there are better options for me overseas than here and John Gribben has said he can get me on that trial in London. I really didn’t expect him to say that, I was also expecting his line on transplant but it still upset me given everything I’d heard in the US.
I’m lucky I have options, just didn’t expect him to confirm that moving back to the UK would be what he would do in my position! I see my prospective transplanter David Ritchie in 3 weeks. I really do trust him with my life. He is not a CLL specialist but is very across the disease and he has done more transplants on CLLers and post ABT-199s plus those who have had Richters than anyone else. He is very like Thomas Kipps so I will make the decision as to what to do after seeing him.
At this point I’m inclined to try to stay well and head to London in early October, get on the trial and have Rob and the kids join me for 3 months over their Summer school hols in early December. Would only mean they have a few weeks without me either side and if I can get a deep remission it will be worth every hour apart. Con thinks it will take me a while to get sick enough to qualify for the trial which is a good thing. I hope he’s wrong about Richters, that was the scariest percentage I’ve ever heard – I think that has upset me too. This disease is hard enough to live with without worrying about transformation!
As for the conference he says Sunday 6th would be best – in fact he’s not arriving until the Sat night and doesn’t know anyone going to the conference in the Blue Mountains! Will call the LF tomorrow and have another chat.
Thanks for the non Medical advice!
13th May 2015 – update on the CLL Forum
Saw Constantine Tam yesterday. He gave me the following options:
1. Transplant – while I have my window
2. Ibrutinib on compassionate access (which he doesn’t favour for me)
3. New generation ibrutinib (B something or other) very like ACP-196 opening soon (same as above – he wants me in a CR quicker than ibrutinib can get me – he’s worried about Richters – see below)
4. ABT-199 plus Ibrutinib trial for MCL opening shortly in Melbourne – he’s hoping it might be open for CLL in 4 months (this appeals a lot!)
5. CART-19 in about 7 months (no guarantees this will be open in that time frame)
BUT said that if he were in my position now he would go on the ABT-199 plus Obinutuzimab in London and after the 6 months he would try to get me access to the drug here so I didn’t have to keep flying back to the UK to pick up the pills. I’m emailing Dr Gribben to get the trial protocol so I can show it to David Ritchie when I see him in 3 weeks. My ALC is now 14.5 so there’s still time and I’m not too bulky.
He scared me with Richters statistics post FCR in both watch and wait and ibrutinib (he said with my markers he thought it was around 15% in both).
All a bit mind bending to be honest.
13th May 2015
Thanks Lynn – I like your thinking – I did ask Tam about mono obinutuzimab and he said he managed to get it for a few patients last year here and it worked well – he can’t get it anymore!
I will be interested to see what David Ritchie, my actual specialist says when I see him on the 3rd June. In the meantime I’m dreaming of the kids having their first winter Christmas. Professor Gribben is keen to have me on his trial (I think he’s only managed to recruit 1 patient since ibrutinib became available on the NHS) so I’m sure there are ways and means!
Thanks for chiming in…it all helps and I need a little clarity at the moment.
Thanks Anna was quite a depressing consult and I felt he was leaning towards transplant for me (he’s not my actual specialist so was just giving me advice). I see Dr Ritchie in early June and will make the call after that but I’m thinking I should do it sooner rather than later if I’m going to jump in to the London trial.
14th May 2015
Thanks wup – had a good chat with my employer today. They will be supportive and have said that if I want to work while in London they would be happy for me to carry on doing my job there – this would certainly help financially. Let’s see what Dr Ritchie says. I would love Ibrutinib plus ABT-199 and if it’s only 4 months until that one opens that is in my timeframe hopefully.
15th May 2015
I emailed Dr Ritchie and my haemo-onc Melita Kenealy to let them know what Con had said and what I’d learned in the North America. He is overseas and I see him in a couple of weeks but he was good enough to reply to me saying there is a danger that I could go around in circles trying to find the perfect study. He said there are certainly a lot of possibilities, but he would distill them down to a non chemo combination probably involving ibrutinib, ABT-199 or BGB3111 which is the new generation BTKi that is available now (on trial or off) and when a response has been achieved, move onto transplant.
He also confirmed they’re now searching for a MUD donor as my matched sister may not be able to donate.
I’m pretty freaked out by this email – I didn’t realise he was only looking at an inhibitor to get me to transplant. Will know more on the 3rd of June but inclined just to get on a plane to London straight after that!
2nd June 2015
Big appointment for me tomorrow and I’m nervous to say the least. I have told myself I’m going to do what the good Dr David Ritchie says. Just emailed him a list of questions which I don’t normally do but it’s such an important consult I thought it might help (and I still feel I put Constantine Tam on the back foot and, being a journalist, may have backed him into a corner to say if he were in my shoes he would move to London, so I want to make sure I don’t do the same thing with David Ritchie). Wondering if any of you have any other thoughts of questions I should be asking at this stage?
This is what I sent him:
Really looking forward to seeing you tomorrow, I think this appointment will be my most important since diagnosis so I just wanted to flag some questions I’ll be asking prior to seeing you (I don’t normally email you so I promise this isn’t going to become a habit!).
• London trial – ABT-199 plus Obinutuzimab what do you think? Can I get anywhere near the combination here – ABT-199 plus R or O after Aug 1 if it’s approved on the PBS? (Con reckons not because I don’t have 17P deletion but I want to explore all options – can I buy it/get compassionate access/fundraise to pay for the trial? This is the one combo that appeals to me most)
• What can I get here? I really am loathe to go on ibrutinib or its successor without a MAB and I’m against anything randomised against chemo – I do like the idea of Ibrutinib plus ABT-199 which has just opened for MCL, what do you think about waiting for this trial to open for CLL?
• Latest on Richters on the novel therapies? I’m doing the ultimate risk assessment and while the risk percentage of acquiring a transformation is less than transplant related mortality I’m loathe to go to transplant.
• If I do have to go to transplant how long could it take to find a matched unrelated donor and what are my chances of getting on the trial at the Royal Melbourne of the anti-GVHD drug TCZ?
• How long can I avoid treatment? I feel really well and have avoided flu and chicken pox at home in recent weeks despite the best efforts of my children (not sure if it helped but I put myself back on Valtrex) – I’m also nowhere near as sick as I was prior to FCR – I have slight fatigue but nothing else and it’s a long way from being debilitating. Is there any problem with waiting? Could I do HDMP plus O or R protocol (Kipps) to buy me more time before having to jump into another treatment when the time comes, if we’re not there already?
Thanks – see you tomorrow.
3rd June 2015
Well that was a very good consult indeed. He took his time getting there via measured elimination of my options but David Ritchie has agreed that the London trial is the best option for me and is going to liaise with John Gribben about my participation. He held out a slight hope they might be able to do an arm of the trial here but wasn’t overly optimistic. He also said my disease is very stable and we have time to do nothing, loving watch and wait at the moment.
He got me to agree that if I wasn’t getting the deep response he wants to see from the trial (and he loves ABT for me) then I will board a flight to Oz and let him transplant me. I think that’s a fair deal. I’m very relieved and happy that I have a definitive answer.
Now have time to sort my paperwork/job/kids out and plan the return to the UK. Incidentally the Leukaemia Foundation of Australia has asked me to present to a parliamentary breakfast they’re hosting in Canberra on the 18th – Jannsen are paying for it as I imagine it’s linked to Ibrutinib going for government funding approval. Patients such as me are in a real pickle in Australia and the timing of my presentation wi be interesting given I’m now having to make plans to head overseas to receive a drug invented in Melbourne. Hey ho at least I have a proper plan now and can stop going around in circles. I am happy. Thanks to all here for your support over these tumultuous few weeks!
Email to Professor Gribben – 5 June 2015!
I saw David Ritchie yesterday and he concurred with Con Tam that the best option for me now is an ABT-199 trial and there isn’t one open to me in Australia at present so it looks like I’m coming back to London. He is going to email you directly to ask about whether they could do an arm of the trial here (we have a number of younger patients here in my situation where ABT would be preferable to Ibrutinib) but I know that’s a bit of a longshot so I am now making plans to return to the UK.
I’m well enough to continue with watch and wait for a little while longer but I don’t want to miss out on the trial window. Are you able to send me the trial protocol and most importantly the parameters for entering it in terms of the state of my disease? My ALC is now 18 and lymphs are 5cms, I’m 26 months post FCR and have been relapsing for 18 months but ever so slowly. Other than CLL I’m in perfect health! I want to make sure that I meet the criteria for selection as close to re-entering the UK as possible. I have registered back with my London GP – just need to make sure I’m referred to Barts rather than UCH which was my local hospital, if necessary I can change practices to make sure I fall within your boundaries (I’m not sure how these things work).
I think it was fate that I met you in San Diego (and David Ritchie was laughing about how many haematologists I’ve seen in the past 2 months). He trusts you with me and really likes the idea of combining these 2 drugs. He still wants to transplant me but if we can get to MRD- that’s an argument he says he’ll have with me down the track!
I’m actually pretty excited that I finally have a decision on the next step, and it will be great for the children to spend some time in London.
Look forward to hearing from you.
Speech to the Parliamentary Breakfast in Canberra on behalf of the Leukaemia Foundation – 18 June 2015
First of all can I say how honoured and humbled I am to be here speaking to you this morning representing far too many patients who find themselves in my position.
It was in December 2011 that I took my 2 year old daughter to see my wonderful doctor Sally Kogosowski about a minor infection. She said “it’s nothing, but I haven’t seen you in ages Deborah let me check your records while you’re here”. I was 38 at the time. “Oh I see you came to see another Doctor here 6 months ago about a lump in your neck” – “yes” I said – “it wasn’t anything, I had a blood test and ultrasound and I got the all clear”. “Is it still there?” she asked. I said “yes, and there are a few others”. She came over and examined me and said – “you do have private health insurance don’t you?” I said yes and she said “it’s probably nothing to worry about” and then gave me a hug “but I do need you see someone today”- and another hug – “let me ring Cabrini and find out who’s available”.
15 minutes later I’m being driven to my local private hospital to see a doctor whose speciality she hasn’t explained to me and I google her on my phone and find out the person I’m seeing is a haematologist. I still haven’t made the connection with blood cancer – in fact as a former journalist, and child who grew up in the 80s, my first association with the word haematology is HIV and Aids so I am totally freaking out but I do somehow still think the lumps may be an allergy to a friend’s guinea pigs so I calm myself down.
An hour later I’m seen by my fantastic specialist Dr Melita Kenealy who says to me, “90 percent it’s probably nothing to worry about, but we’re a week from Christmas, you have 3 children under the age of 7 and I just don’t want this hanging over you so let me make a call and see who’s available to do a lymph node biopsy”. 5 days and a lot of alcohol later I’m back in the hospital getting results – as soon as I see her face I know it’s not good news. She tells me – “I’m afraid we have a diagnosis, you have an incurable form of leukaemia called chronic lymphocytic leukaemia (CLL) and the average patient lives for 5 years – but the average patient is a 75 year old man, we almost never see this in your age group, it’s extremely rare”. The room starts spinning and I start crying – I remember my first reaction being “but she’s only 2” in reference to the daughter I now had clinging to me on my lap. Incurable!
Well that was 3 and a half years ago. A year later my disease progressed enough to warrant the gold standard chemotherapy known as FCR. To put this into context I had lymph nodes approaching 10cms throughout my body which meant my neck was actually wider than my head, I had no jawline and getting my hair washed at the hairdressers became an ordeal because I couldn’t fit my neck in the sink. Seriously though it was pretty unpleasant, it felt like I was being strangled and came with night sweats, weight loss and random infections which wouldn’t go away easily (most people with CLL actually die of pneumonia – this is a cancer of the immune system after all). My specialists hoped chemo would buy me 5 years until the next treatment but we knew I had aggressive disease and it bought me 6 months before I started relapsing.
I had worked throughout treatment and with clever scarfs and a sense of humour not many people knew how sick I actually was. The way the disease works is its pretty smart and it keeps mutating so you often can’t use the same treatment twice and the remissions just get shorter and shorter between treatments until you run out of options. Shortly after relapsing I started briefing the children because I wanted them to be prepared and never feel that we had kept things from them. I have been seen by a bone marrow transplant specialist since diagnosis as I was told this could potentially save my life down the track but the mortality rates are high – as much as 50 percent within 5 years for my disease.
But, then there’s hope – and this story so needs to have a happy ending. Medical science is a wonderful thing and in the time since diagnosis there has been much good news for those with my brand of leukaemia – CLL. There are new drugs in clinical trials and an important one has even been approved in the US and funded by other public health systems around the world including the NHS in the UK. That drug is called Ibrutinib and it is saving the lives of those like me who have relapsed and become refractory or those who are too frail to have chemo as a frontline treatment. That drug is before the PBAC at the moment, and I have friends who are paying $11,000 a month to keep themselves alive using ibrutinib.
For me it’s not the long term best option, but a similar drug which could save my life was developed at the Walter and Eliza Hall Medical Centre in Melbourne with Government and Seed Funding from the Leukaemia Foundation – and that is my best hope. Ironically despite living in Melbourne the drug known as ABT-199 is no longer available to me in a clinical trial in Australia. If I was over 65 it would be but given I’m 41 I’m now having to leave my family and full time job in a last ditch attempt to save my life with a move to England to enter a clinical trial for 6 months there. I am terminally ill and without this drug I will have to go to transplant here and death is a very real prospect.
From a cold rational economic point of view I will personally have paid over $100,000 in tax this year and I won’t be paying that next year as my income will be severely limited and I am the breadwinner in the prime of my earning years. A transplant could not only result in death but a life time on disability – I may actually never be well enough to work again if I have to go down that route.
But beyond all that the frightening thing for me is that I will be boarding a plane In the next few weeks and kissing my children goodbye, 2 boys aged 10 and 8 and a little girl who is now 5 in her first year of school, not knowing if I will ever see them again and that breaks my heart.
I’ve been dealt a lousy hand with this disease but the pain has been exacerbated by the fact that with all my tax dollars and private health insurance I can’t be treated here at home near my family. I am fortunate to be able to use my dual nationality to access treatment in the UK when so many others can’t but, as a leading G20 nation, Australia should really question why we are so far behind when it comes to accessing these lifesaving drugs – even those like ABT-199 which have been developed by our own scientists. I just spent a couple of weeks in the US exploring clinical trials and specialists there are appalled by the situation here. I can’t imagine how hard it must have been for the top specialist at the Peter Mac in my disease to tell me if he were me he’d move to England and for my specialist at the Royal Melbourne to agree. We are failing patients and I didn’t realise it until now – on diagnosis I actually congratulated myself on being in Australia – I reckon it would have taken another year to be diagnosed in the UK but that’s now where I’m heading.
One in four of us will end up in my position, this is a national debate we need to have urgently – I wouldn’t want anyone to be going through what I’m going through now and would appeal to you to do whatever you can to make sure other Australians get the opportunity to see their children grow up without having to suffer and take the risks I am. Thank you for listening.
10th Sep 2015 – update on the CLL Forum
Quick update on my own thread, I seem to have been jumping in a bit on others (apologies to them). I have been in London now for 5 weeks and the children joined me this week and will be here for another couple of weeks. Just had an email from Professor Gribben who wants to see me on weds (16th Sept) the ABT-199 plus O trial has opened its next cohort and, all going well, I should start at the end of the month. I’m very excited and relieved and just can’t wait to get on these drugs now. Enough research, decision made, life has been turned on its head and I’ve moved to the other side of the planet to access my next treatment so I am very ready to get on with it now! I’m very impressed with my new GP and Professor Gribben and feel like I’m being looked after very well here. Will update you all as I go. Hope everyone is fine and dandy.
19th Sep 2015
Wow – wanted to post this as soon as possible. Met up with Professor Gribben at Barts and the next cohort for the trial should start in 2 weeks but the BIG news was that he said he meant to introduce me to the patient who came out before me. Gary who I’d say was in his 60s had been in a hospice when he started the trial of ABT-199 plus Obinutuzimab 6 months ago – he’d had 8 prior therapies and had been living with the disease for many years. Professor Gribben had just had the pleasure of telling him he was MRD- with no detectable cancer and he is taking him off the drug. He sees no reason to stay on ABT-199 once MRD is achieved and he has taken others off, some have been off now for over a year and they are still MRD negative! It’s super exciting for me as it means if I can get there that quickly like Gary I can move back to Australia sooner. He said, while I have progressive disease, I could stay in watch and wait for longer but he doesn’t want me to miss out on this trial. The next cohort is 40 patients and he has apparently reserved 17 spots for patients at Barts who all have to go through the screening. I am so happy (although he did caution about not getting over excited but what the heck).
10th Oct 2015
Quick update – screening has started – may I ask what’s with the no sedative when you have a BMB in the UK? I was mortified. I have an official screening number with Genentech who are running the trial so, as long as I pass screening, I should be in. Professor Gribben has said that once they’re happy they have everything they need I can fly back to Oz to see the children for 2 weeks before starting the trial. That’s a real bonus as I didn’t think I’d see them again until they get back at the end of November. He is hoping to get 5 of us onto the trial but it’s filling fast so he’s only sure he’ll get me and 2 others on. Barts is the most incredible hospital – the new wing feels like a private hospital – I’m very lucky.
31st Oct 2015
Just found out – I’m on the trial!!! I go in on Monday to have a PICC inserted then start obinutuzimab on Tuesday – so so relieved. Thanks for all your prayers and support.
That, my friends, pretty much brings us up to the start of this blog. As you can see, if you’ve managed to get through this (hopefully not all in one sitting) it’s been a long road to get to this trial and my emotions have been up and down all the way through. I was surprised with how composed that first email was to my family on the day of diagnosis. It’s not how it felt but I’ve always been the strong one, the big sister who sorts things out and gets things done so I suppose I was just carrying on with that role. Every day from that moment on, not an hour would pass without me thinking “I have cancer” – the shock has never gone away, I’ve just taught myself to deal with it.
Next thing for me are the CT results from the scan I had a couple of weeks ago. I will get those on Wednesday morning, then I have cycle 5 of the obinutuzimab next Tuesday (almost there, only one more to go after that!).
I board a plane on Thursday 25th Feb for Hong Kong and then Melbourne – it’s time to go home, even if it is only for 3 weeks, I am so lucky.