It has been a few weeks since I’ve updated this so I apologise but I think that it’s probably a very good sign that I’ve reached the stage in the trial where I can pretty much get on with my life and I’ve certainly been doing that with the children who are still here for another fortnight.

This time of year always feels like a milestone.  I mark my “canciversary” on the 20th December – that’s the anniversary of my diagnosis and this year marked 4 years since Dr Kenealy told me that the pea sized lumps in my neck harboured something which was incurable and could kill me.   A year later that exact week I was told I was so sick I couldn’t put chemo off anymore, flash forward another year and the news that week was that I was relapsing and 2014’s December update was that it was now time for transplant.   This year was the first in 4 years that I have had genuine reason to be optimistic and this Christmas was the best for years.   Because I’d been away from the children for so much since August I had also consoled myself a little too much in shopping for them so they were spoilt rotten but the highlight of the day itself for me was cooking a five course Christmas dinner in 3 sittings for the concierge who were working in our building to thank them for looking after me so much since I’ve been here.   It was so nice to do something for others on the day itself and I’m going to make it part of our Christmas tradition from now on.

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In terms of the trial my dose escalation to 400mgs of Venetoclax passed without incidence, a day very similar to the one described in my last update.  For the first week on the dose I felt a little fatigued and would get flushed a few hours later regardless of how much water I drank but it was manageable.   On the 29th December, a week after being on the maximum dose, I had my third cycle of obinutuzimab which was a day infusion of the latest generation CD20 Monoclonal Antibody.   It was the first time I’d had this drug since being on such a large dose of the venetoclax (I was only on 20mgs when I had the second cycle).  I was expecting to feel low for a few days after and I certainly was wiped out.  The fatigue was quite debilitating but I was still able to get out and about.  Until that point I had thought that I would have been able to work had I been in Australia (my measure of how sick I feel) but that week would have been a right off and I was concerned that it might continue.   My bloods were all ok – they’d dropped a little but my haemoglobin wasn’t so bad to justify the fatigue.

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It took a good week to start feeling normal again and I still get a post dose slump around 4 hours after taking the venetoclax – it’s comparable to the fatigue I experienced in early pregnancy and I do have to slow down at that point.  The recommendation is to take the 4 tablets on a full stomach within 30 minutes of having a low fat breakfast but I’ve found taking it after lunch suits me much better and, as this was the time of day I was having it during all my weekly dose escalations, I’ve stuck with it.   It means the fatigue only sets in around 5 O’clock which is the time I’m making dinner for the family, once I get through that I can just take it easy with them for the rest of the night so it is fitting around my lifestyle.  They all return to Australia in 2 weeks so I’m hoping when I get back on the exercise bandwagon that will help too.  Speaking of which, like many, I normally make New Years resolutions and as the clock struck midnight on the 31st December I went through a list of them in my head before giving myself a bit of a shake.  My poor body is going through so much I couldn’t possibly start starving it or making it work too hard in the gym so no massive changes for me this January – it’s time just to relax and be a bit kinder to myself.  One of the recent highlights was being given tickets to see Charlie and the Chocolate Factory by Cancer Research UK – the sets were amazing – you can see I look tired in this but it was a wonderful production – highly recommend it for those visiting London.

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I’m now over half way through the trial and am seeing light at the end of the tunnel. It helps now that I’m only in hospital once a month too – I’m almost forgetting the intense time while venetoclax was being introduced.   It was funny when Sam gave me a month’s supply as I walked out of hospital on the 29th knowing I wouldn’t have to be back, all going well, until the 26th January.

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The children all keep asking me if I’ve taken my tablets which is quite cute and their father gave me a pill box from Tiffany’s for Christmas so that is always with me.  If it wasn’t for the fatigue I could imagine taking venetoclax long term and, even if I can’t manage it better, if I have to stay on it it still beats the alternative.  The next milestone for me is my fourth cycle of obinutuzimab on the 26th January, which coincides with an all out NHS junior doctors strike so I’m not sure what will happen with that if it goes ahead.  I am booked in for a CT scan on the 2nd Feb to confirm whether I’ve had a complete response, my blood work and lack of lymphadenopathy rather suggests I have but we won’t know for sure until the CT scan looks deeper.  If there is no detectable disease radiologically then 8 weeks later (towards the end of March) I will have a Bone Marrow Biopsy after my 6th and final cycle of obinutuzimab to look for detectable disease.  This is the point that I’m praying I’ll get my first negative result in 4 years and can start returning to Australia – I’ll still have to come back monthly for a further 6 months for a check up and to pick up my next dose of venetoclax but that’s a small price to pay if my disease is under control, or fingers crossed (whisper it) gone.  You can remind me I said that when I’m at the mercy of Qantas and living with permanent jet lag.

 

 

 

 

 

 

 

3 thoughts on “On the 6th day of Christmas my Trial Nurse gave to me

  1. Sorry to hear about the fatigue. I have found that if I take my 100mg venetoclax right after eating my low fat meal(milk and cornflakes), that the side effects are less(headache, indigestion, fogginess). It sounds like you have caught up to me in are race to mrd-. I get my bmb at the end of March also.(I’m rooting for a tie). Also I will trade 1 neut for 50 of your platelets(of course this is subject to current trader rates)

    Dave

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  2. Hi Deb

    Just returned from holidays and am glad to read of your continued success. Albeit with a few hurdles, but then again not many things in life are free and/or easy. Keep strong, you’re in our thoughts often.
    Mike and Michelle

    Like

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