Well 5 weeks in I'm feeling very well considering. I got a rather lovely note from my Aunt a couple of days ago and in writing to her I've kind of written a blog entry.
I'm still cycling in to work every day, I have stopped running though as I have found my current drug regime is making me quite tired. A couple of weeks ago I found out that I am Philadelphia Chromosome positive (PC+). Being PC+ means I am able to take Imatinib, which you may remember is the drug that aims to switch off the signal to overproduce white blood cells. Rather frustratingly I won't be able to start the new regime until 29th May for a variety of reasons. First I had to have some virology tests, second I had to freeze sperm, as the drug is suspected to make sperm toxic and in the event that we wish to have another baby it's likely we will have have to go the IVF route.
Having completed those two things I was supposed to start my new regime on Tuesday, however on seeing my consultant she informed me that she's keen to perform a stem cell harvest. It was a decision that was both disappointing and heartening in equal measure. Disappointing in that I was keen to get on with things and heartening in that the decision suggested that my consultant is right at the forefront of fighting the disease. In brief a stem cell harvest is performed at this stage in order to freeze store my white blood cells at the stage of the disease I am at currently. This is performed in case the disease progresses, at which point they will be able to replace the deteriorating white blood cells with the stored cells at this stage. The main debate is around whether to take cells now, or once I am on the new drug and it has proved successful in reversing the disease to molecular remission i.e. the cells are in much better shape than now. At present there is no clear agreement in the profession, so my consultant has decided to take one set now and one in 18 months time, at which point (hopefully) I'll be in much better shape. The issue is clouded by financial constraints, in that there has to be a justification on the trust's part to store two sets of stem cells on my behalf, however at this stage there is no real pressure on this area of treatment. However, in future I may be asked to make a decision as to whether I pay to store one set.
Anyway, the reason I couldn't switch regimes on Tuesday was that I have to be completely drug free for two weeks. It means I have to come off the regime I am on currently as well, which in it's own right is frustrating as it had succeeded in lowering my white blood cell count from 143 to 92 in 4 weeks (target 4 to 8) and by coming off the drug it will more than likely jump back up to the initial level.
Despite all this, I am remaining generally positive. I am having my low moments which I guess is perfectly normal, but the boys keep us extremely busy and the fantastic side effect of this situation is that it's prompted us to get off our arse and do, rather than talk about doing any number of activities. We've also got the move pending which means we've got plenty on generally. Nicky's a bit more up and down and quite angry about things in general, but I guess once again that's normal. We will take this as an opportunity to make the most of what we've got and make sure we squeeze every last ounce out of life.
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14 comments:
Six, I'm sorry you've got to come off your drugs for a couple of weeks, but if it makes your treatment even more successful in the long term, it's worth it.
You're being tremendously positive,and cheerful.
A big hug from me, I'll be thinking of you. x
Six,
You have said what I thought you may at some point, that you have you low moments and that Nicky is up and down, angry etc...it's not meant to sound crass but it is to be expected. It's good to hear of your progress and to offer support for you all.
If you are managing to stay positive more than being negative, you are doing well and can do no more. And from what you say there is much more to positive for. You do seem to have a great Dr/Consultant which does make a difference. She is in the forefront of exciting times in this field of medicine and I do see the benefits of stem cell research and what they can possibly lead to and what it offers. Some parts of the country and hospitals through decisions of the trusts or financial reasons this may not be on offer so take whatever is offered. Keep positive.
Like Curmy, I'm thinking of you.
I agree with what Gildy says about Nicky - my sister in law was the same when my brother was diagnosed with cancer.
You are sounding positive though and squeezing every last drop out of life is good but remember you will also need time to rest and talk, the first few months are difficult and it's easy to get sucked in by the 'why me?' thoughts.
I'm pleased that you are having your stem cells stored because it is important to understand how these things develop - you might not feel like being a guinea pig when you want to move on but you are in good hands.
Six, my daughter in law was diagnosed with severe breast cancer
10 years ago. Because she was so young with three young children my son and she was desperate.
They were living in Belgium at the time and the cancer had been ignored.......she was told she had mastitis. It was only after she found lumps under her arm she returned to London for all her medical treatment, which was only on trial at the time.
She had, like you a stem ccell transplant, where her blood cells were harvested......and so on.
Same treatment as you will be having. LIsten Six, she is better.
It worked. It's extreme treatment but you are young and you will get better. Daughter in law had mastectomy....at least you wont be having that.
Good luck, lots love, Sally xx
If I was in Nicki's situation, I wouldn't be a bit angry, I would be positively bloody furious. I am glad she isn't putting a lid on her emotions and I am also glad that despite the low moments you are getting on with life.
You know that you are all in my thoughts and will remain so.
Be good to yourself.
The very best of luck to you all. Poor Nicki (as well as you) must be frightened as anything. You continue to sound remarkably positive. Very best wishes to you all.
Your very last sentence in that post says it all, "We will take this as an opportunity to make the most of what we've got and make sure we squeeze every last ounce out of life." excellent. GOAD, Go Out And Do.
Is this Imatinib something that youu will stay on in order to keep it under control (like insulin) or is it a course of treatment that is aiming to effect a cure?
I'm glad you can take it though.
Chin up and keep us posted. We're all thinking of you, Nicki and the boys.
Keep up the good work Six.
Great to hear you're positive and coping.
K xx
It's slightly different but if you can catch Gene Wilder's interview with Parkinson towards the end he talks of his illness and how he is in remission.
Six,
How successful the treatment has been and yes, even talk about taking stem cells from his own body and when the time is right...and replacing them later.
I'm not sure but usually Parkinson is repeated so watch out in the listings if you get chance.
Michael Aspel has the same illness and seems to be doing fine...
Hi, Six. It's great to hear that you've got such a positive outlook. I really do hope this Imatinib does the business.
Thank you Curmy, Sarnia, Kate and Shy
Gildy I am taking everything that's on offer I'm making absolutely sure of that, see no reasoin not to.
Paul, Gildy and Mags. Nicky is coping well, I think sometimes she just sees things as a complete injustice.
Rupe, the more I talk to people the more I hear stories of survival and of greta quality of life. Keep it coming it gives me a lift.
Span, it's given us a new lease of life that was really quite overdue. We weren't lazy people by any means but, we did do things very safely and we now seem to be deceiding to do much more interesting stuff.
Gavin, the diabetic comparison is probably the closest laymen's example that there is. The way i see it is that like diabetes with Insulin, CML sufferers are now surviving and lkiving a normal life on Imatinib.
Thank you Gildy, I'll check out the interview if I can get hold of it
I'll watch to see if ITV2/3 carry the programme again...they have repeated some ITV1 programmes in the past(he also turned up on This Morning)I'd have been back sooner but have had pc problems.
No power for 7 days, the repair man turns up with new power pack and for some reason presses the button on the pc, it fires up and behaves! (Makes me look stupid)
May push me into getting a new pc or at least going broadband.
I digress... had I thought at the time, it probably was available on the ITV website as many programmes seem to be being made available on the net.
Hope the move continues to go well...
Whats the latest with the drugs, are back on them now?
Hope its going well.
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