My fiancé (he is 39yrs old) was diagnosed with CML August 2014. Since then he has tried Tasigna, Sprycel, and Gleevec (in that order). He had to be switched from one med to the other due to severe thrombocytopenia (the rest of his blood counts were always good). He has been on Gleevec for close to four months now and his last PCR came back one percent higher than the previous (11% to 12%)so his doctor is suggesting he should be transplanted. He has had so many set backs already that I think this is the final blow for him and it has really affected his otherwise very positive outlook and happy demeanor. I would love to find a post-transplant patient who, hopefully had a similar disease course to my fiancé) to answer some questions and ease some of his concerns. Thank you.
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I had a MUD bone marrow transplant 20 years ago.
I was diagnosed in late chronic phase (massively enlarged spleen, high platelets, low hgb etc) in 1998/9 here in the UK, but luckily I responded to imatinib for 3 years via very early clinical trials in the USA. However, after 3 years of a very good molecular response I showed signs of resistance to imatinib and a P-loop mutation was found to be the cause. Luckily my younger brother was a good HLA match and I was transplanted with his stem cells in October 2003 at Hammersmith Hospital in London. 15 years on I remain well and treatment free, although my PCRs results show low positivity (at around 0.001%) they have remained stable and cause no problem. Obviously my new immune system keep this tiny amount of residual disease under control.
Has your fiance had mutation testing to rule out that as the possible cause of his response? I suppose the problem is - from what you say - that his platelets keep dropping no matter what TKI he tries. To what level do they fall? It may be that his doctors could put him back on whichever 2nd Gen TKI he responded best to (given that imatinib (1st gen TKI) may not hold his disease as well as the others) but reduce the dose a little so that his disease is controlled but his platlets do not crash.
He is obviously sensitive to TKI therapy - at least the 2nd generations TKIs-.
Where is he being treated?
Sandy
How old were you at the time of transplant? What phase were you diagnosed in? Did you fail previous TKIs prior to transplant? How have you been doing since the transplant? Sorry for all the ????? lol. Thanks for responding to my post :)
I was 44 when transplanted and it's actually 21 years in a couple of months. Diagnosed just over a year previously and all prior to availability of TKI's. At diagnosis I was seriously ill in blast/acute phase. Enlarged spleen, chronic chest infection, rapid & huge weight loss etc etc etc. Seems also I had what was described as "the highest white cell count in a living person" and I also had thrombocytopenia. I was blue light emergency admission straight to a high dependency unit at Leeds General Infirmary and then rapidly moved to the specialist leukaemia treatment unit which at that time was based there in a Leukaemia Research Foundation funded unit. I had to have platelet infusion once or twice every week and my blood all taken out and spun round a machine to remove white cells and then put back in and 3 times in first month.
I went on TKI's quite a lot later and some time after my transplant... I want to say about 3/4 years after. (time has helped me reframe all this and even blur timelines) I went on imatanib and it had immediate excellent response.
Life is good and considering how I started this journey my health is pretty darned amazing too. I run a business. I do a job that's quite physical... training horses and people in a range of equestrian sports. I've had customers/staff 30 years younger than me comment at how fit I am and how they can't keep up with me
Considering the fact that in those early years I've had some real major crisis - 4 occasions where my family have been prepared for me not seeing the week through then frankly I'm just really appreciative of treatment available, research and life and everything it affords.
I am currently on DESTINY trial and am now 3 months TKI free after over 17 years on them. :)
Having responded to your questions I do feel though that I must say something that I passionately believe and over the decades of experience and with me being one of the longest survivors I feel I have to say.
When I was being "counselled/informed" about my treatment and particularly re my Matched Unrelated Bone Marrow transplant I kept being told about all the contraindications and points where I'd likely be gravely ill and die.... appreciate that was in the days where everything I had was "trial" and frankly hadn't really worked that well. I remember saying to my consultant.... "well you never know I just might bloody well break the rules and live".
In truth at that time every person who had a similar disease course to mine just went and died!
Appreciate that in the "olden" days when I had my transplant it was MUCH higher risk. Very much a trial and at that time it wasn't leukaemia that killed you but the darned "treatment".
Seriously though, the point I'm trying to make is you just have to want to live and stay positive and do what's necessary to make that happen. Easier said than done I know... but don't let it drag you down. Talk things through with your fiance. You can change how yo feel in a heartbeat and when my family and I were in similar circumstances at early stage we determined that we weren't going to allow cancer to have us. To allow it to shape everything always. Of course there's been times where frankly it's been HUGE. I've had extensive periods in hospital. 7 months in one year!
The questions Sandy poses are soooo important. I absolutely know that it's great diagnostics and great treatment .... the best... the leading edge that really count. Learn what you can about best practice treatment. For me it's worked having people on my side who are brilliant but aren't afraid to say "Don't know but let's see and find out" I've seen my consultant grow to being in charge of the unit where I'm treated. He's recognised internationally as being part of a cohort at the leading edge.
Where is your fiance treated?
Sandy,
He did have mutation testing done and it was negative. His platelets got as low as 20. He is suppose to go to the Mayo Clinic hopefully sometime next month so we can see the CML specialist again to see if any of his siblings matched. It was great hearing your story. Thank you so much for responding to my post. I really appreciate it.
Christina
Darley,
I'm so sorry you went through all of that to get where you are today. It sounds like you are a very positive person though and that is why you have made it through that incredibly difficult journey. He will hopefully have an appointment soon with a CML specialist at the Mayo Clinic to see if any of his five siblings are potential matches for him. Thank you so much for responding to my post. I am glad to hear that you are doing better now.
Christina Daugherty
I try to not worry about what I can't control and effect. I also try to stay positive and hopeful. I've done that in a variety of ways. It helps because my partner in life does executive coaching, change management and personal development and all that psychobabble stuff about feelings that us stoic British guys don't do and I do sports coaching. I used to compete fei international level and then went on to coach. There's a lot of stuff there about mind set and framing things. It means I tend to be a "can do" rather than a "can't do". I know and get all the techniques of visualising success. Setting achievable small milestones. Reframing things in my mind. Dealing with adversity and triumph.
At the end of the day though I know from experience that IF you're going to have to have a cancer that this one is one of the better ones. I also know that medical science is absolutely leading the way with regard to treatment options. I know that despite everything in relation to having had leukaemia and periods of illness over the years that I'm still here and not only that but life is good. VERY good.
I'm not pretending it's been a breeze and for sure there's been times when we've all had to dig very deep and try not to get into despair or to alllow cancer to rule our lives by sucking us down.
Good luck with the next step and the 5 siblings. That was step I got stuck on... Only 3 siblings and none of them had the decency to be a viable match. But hey ho. I waited and then a Matched Unrelated Donor was found on the BMT register and I was able to take that next big step.