I had my monthly pilgrimage to England for cycle 9 this week – my 5th return trip from Melbourne since the end of February. London was sparkling in the sunshine, like a lady in her Sunday best giving a glimpse of the show she’d put on for Her Majesty’s birthday just a couple of days earlier.
It was the first time I had seen Prof Gribben for a couple of months and I realised there isn’t a photo of us together on my blog so we took this for posterity.
John’s tan beats mine (every time). I still can’t believe how far we’ve come since that fateful meeting in San Diego last April and I’ll be forever indebted to him for helping me get on this trial and saving my life.
I was so looking forward to catching up with him because, amongst other things he had my latest CT results to show me. So here they are…this is a dissection looking down my body as if my head has been removed. You can see my spine, breasts and I got my sister Emily to colour in the enlarged lymph nodes in my neck from my trial screening scan last October to make the “spot the difference” exercise easier.
Bear in mind there are more than 600 lymph nodes in the neck and head alone and mine were all infiltrated with proliferating cancer throughout my entire body. The exciting thing is that last month’s scan shows no detectable disease – all the cancer has completely gone (to the level a CT scan can detect) and that is big news for a lumpy jabba the hut wannabe like me as it was the lymphoma which was going to kill me much quicker than my leukaemia. At my worst, pre chemo in 2013 my neck lymph nodes were larger than 5cms and were starting to strangle me. They were also enlarged under my arms below my diaphragm and throughout my abdomen. The fact that Venetoclax has cleaned out the lymph nodes is fantastic news for me and offers hope for other patients, not only those suffering from chronic lymphocytic leukaemia, but also other non hodgkin lymphomas too.
After seeing what my sister had done with my scan I asked her if she could colour code it red to make the cancer look more menacing – she’s a funny girl – this is what she sent back to me…
I’d arrived at Heathrow on Weds at 7am and had rushed straight to the hospital for my blood test. I met up with Berta and she did my bloods and gently broke the news to me that Prof Gribben wanted a bone marrow biopsy performed that day to look for Minimum Residual Disease – this is the test to see if my bone marrow has also been totally cleared out by Venetoclax – remember I have never had no detectable disease there so, if I can get to that stage, I should get a very long remission indeed and can stop worrying about Richters transformations and transplants. It might also allow me to come off the drug down the track and stop this insane travelling. If I don’t get complete clearance then there will be no chance of me getting off it and I’m much more liable to relapse early. Depending on the level of detectable disease if it’s not cleared completely then I may still have to have a stem cell transplant but that does feel like it’s gone on the back burner.
Barts has a policy of no sedation for Bone Marrows – I thought they were joking when they told me that in screening and it was by far the most painful thing I’ve had done in my 5 years of living with this disease so you can imagine how much I was dreading it. It was probably just as well I didn’t know about it in advance for that reason. In Australia sedation is routine but it does take extra resources, and reduces the number of procedures which can be performed in a day, so I do understand why the NHS isn’t quite so kind to us poor blood cancer patients.
There were two Doctors performing this one and I had to ask why there were two as I was worried one of them might have been training! As it was he nailed the local anaesthetic and, other than some minor discomfort and an inordinate amount of time it took to get good samples, 30 minutes later it was all done and I was very happy. It was my 10th and best bone marrow so far.
I caught up with the team at Cancer Research UK who organised the TV ad campaign and told me my ad is now running for an additional 4 weeks throughout June – Natasha’s hug has been getting great feedback and the “right now” campaign has been nominated for an advertising award at Cannes. I hinted if they needed a patient to accompany them to the ceremony I’d be happy to oblige. It was also a privilege to be able to show the hard working media team my scans and share my good news. The difficulty with filming patients on clinical trials is many of them are very ill and sadly not all have survived since the campaign started which is a hard thing for these wonderful women to deal with when they’re working so closely with patients day to day.
Finally celebrated with friends over cocktails at the Waldorf before I returned to Heathrow to fly home. Prof Gribben is going to Skype me with my Bone Marrow results in a couple of weeks and you’ll get them here first.
The end is in sight…on the plane home and thinking how I thought this trial would be an intense 6 months of my life but it will be over a year by the time I’m through the worst of it but I couldn’t be happier.
Venetoclax now has FDA approval which means patients with the 17P deletion (the most dangerous form of CLL) will be able to access it if they need it in a normal clinical environment in the US. I believe prescriptions will cost between $12,000 and $14,000 Aud per month which far exceeds the cost of my monthly trip to London where I get the drug for free as part of my clinical trial. Next week I get to meet its inventors at the Walter and Eliza Hall Institute in Melbourne (along with a camera crew) – I cannot wait!
A little update to this – my bone marrow biopsy results came back in June with my MRD at 0.01 – -almost negative but there were still some detectable cells. It was a good result for this stage in the trial but I was anxious to get a negative result!
13 thoughts on “A tale of two scans ”
That is fantastic news hopefully you will be cancer free. My cousin has got lymphoma but he is 80. He as bladder cancer and prostrate cancer too. But it all started in the prostrate. He is battling along. Hopefully the drug over time will come down in cost. But at least it is accessible. We would have to take out a second mortgage if we needed it. So pleased for you. You really have something to celebrate. ❤️😄
Deb – You never cease to amaze me with the energy and verve you bring to this journey.
You are an absolute legend!
Couldn’t feel happier for you xxx
Deb, you constantly amaze me with your humour under such serious circumstances. But hey, gotta laugh. Otherwise too my tears. Results amazing. Love to hear your positive story. Many others not so lucky xx
As I’m about to enter a Venetoclax trial in Boston, thought I’d check your site. Celebrating your fantastic progress with you! What a relief for you and your beautiful children — and a sign of hope for the rest of us. My scan the other day showed that my nodes have almost doubled since a year ago, when they were down after taking Idelalisib. Hoping to match your recent scan in another year.
I’m a little freaked out by all the side meds I’m expected to take for anti-viral, anti-bacteria, and uric acid levels. Wondering if you had to take these side meds in your trial — and for how long?
You go girl! May you continue to heal and live your life!
Congrats Leah on getting on a trial of this drug. I’m currently on a skiing holiday in Australja and life is completely normal. I only took the meds to protect my kidneys for a few days before starting Venetoclax, I didn’t take any prophylactic antibiotics but did keep having to have broad spectrum antibiotics in the early days as I contracted a flu which was difficult to shift – haven’t needed those since cycle 5. I’m still on the anti-virals but am not being religious with these so that’s only 1 or 2 tablets a day on top of the Venetoclax – I have no side effects from that at all – I’m sure your trial will be equally successful. Will update my blog but got my bone marrow results and my Minimum Residual Disease is down to 0.01% so I’m very close to no detectable disease. Couldn’t have imagined I’d be this well this time last year when I was preparing to move to England.
Best wishes Deb
Hi Deb, I am so excited to read your story, and so happy for you. I am a mother of 4 young children and my husband has been diagnosed with CLL and was put on watch and wait. We have now been told he is at the stage where he requires treatment but he has 17p deletion. I am trying to find information about the drugs that you have used and how to get on a similar trial. Do you know where I can find out about clinical trials etc. I don’t really know where to start. Thanks Karen
Hi Karen – thanks for this – which country are you in?
Actually just saw your email in an au address. While it’s the worst prognostic marker, the fact your husband has 17P deletion means more trials will be open to him. I highly recommend you getting a second opinion from Constantine Tam – you can see him privately at St Vincent’s in Melbourne and he knows what trials are opening at any one time. The one I was hanging out for but still hasn’t opened here is Venetoclax plus Ibrutinib. I had to go to the UK for my trial. Be aware you can draw down your superannuation fund to pay for lifesaving medical treatment which is what I did – I couldn’t have afforded to do this without that. I will send you my email address if you want to chat offline! Stay strong – you will get through this x
I found your blog via the ABC news article. I lost my soulmate to an aggressive glioblastoma in 2011, so stories like yours resonate with me strongly. May you live a long and happy life, and may your children have the joy of seeing you age gracefully. My soulmate Tina was 42 when she was diagnosed, and didn’t make her 43rd Birthday. I hope you live to be 100 (and don’t have to work until you’re 90 to pay off the money you’ve spent to get treated). Much love,
PS: If you’re interested, our story is here https://thegreenbus.wordpress.com/2011/08/01/ This post is just before Tina was diagnosed. You can find a lot of her creative writing and art prior to this post. Going forward, after about the 15th, it gets dark. But I hope you have time to read, and get to know this beautiful soul.
Thanks Brad, I’m truly sorry you lost your soul mate. I will read Tina’s blog and learn about her and her fight – I’m so sorry she isn’t here today to be with you and share her story. Thanks for the message, I really appreciate it – I thought long and hard about going public with my story but felt I had a duty to help other patients and offer them hope. I only wish happiness for you going forward and I hope you’ve managed to deal with the pain and found love again. Best wishes, Deborah
How are you Deborah , now some more months after “the Car-T “ ? As promising as in December I sincerely hope . Today for me 4 years after the start of the ( 2 years) Hovon 139 trial ,the Obinutizimab and Venetoclax combination , it worked very well , so for now :best regards ,