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Rebecca - CML and AML

Hello again Rebecca

I am so sorry to hear that you are still waiting to find out what treatment is to be recommended for you.

Your case is very different to that of most of us, you have two diagnosis to come to terms with CML and AML. There are only a few specialists in the UK who are fully up to speed with the issues of CML with complications. Sandy has suggested Addenbrookes, and Leeds would also be within travel distance for you I think.

As Sandy and others have said previously it is vital that you get prompt and urgent treatment from a specialist centre. Time is not on your side. I know from personal experience how hard it is to fight for yourself when you are facing all this 'mess'. But I did it, and got the right treatment by making a fuss and getting a second opinion. It was my life and I just battled to get what I needed. Strength and urgency will get you through. Use family and friends to help, and conserve your energy where you can.

Good luck, and lots of strength.
Pennie.

Hi Rebecca
I was alerted to your post on here as I had CML and then acquired AML. You can read my story in the Diaries section. I had to be treated aggressively with chemo before proceeding to transplant. I had 90% blasts when I was admitted and the outlook was bleak but here I am 4+ years later and I am doing great. Happy to talk to you. You can email me on erees@hotmail.com. Transplant has become the last resort for CML patients because the new drugs have proven so successful in treating CML hence the reluctance you detect about CML patients and transplants. I too was very much of the mindset that transplant was not something I would consider but life is just not that way and leukaemia is a very devious disease you need to go whichever is the best route for you.
I also would urge you to see someone at a Centre of Excellence for Leukaemia. You stand a much better chance of success in your treatment. I was treated at Hammersmith and they saved my life. Addenbrookes would be my choice given where you live.
If you email we can swap phone numbers.
Wishing you all the best
Elizabeth

Thankyou both for your messages. It has indeed been a difficult time since I found out I have CML, but it's thanks to you and others on this site that I am learning so much.
At the moment I think I'm being seen by doctors who understand my situation very well, I am on maximum Glivec dose, my blood test results are getting better- no blasts in blood, normal WBC and platelets, but I'm still quite anaemic,(9.1) although this is getting better. My side effects from Glivec are being managed (water retention) and I am due to meet the transplant team soon. What other benefits would I get from going to another hospital? I understand that Prof Reilly is highly respected in haematology and CML, and so far everything seems to be going to plan.
I'm sorry if I sound naive, but it's still all sinking in. What kinds of questions should I be asking regarding my treatment?

Thanks for your help
Rebecca

Hi Rebecca
From what you say and the response you have had from Glivec, your diagnosis is that of CML and not AML. You seem to have had a fantastic response to glivec obtaining a haematological remission very swiftly, in fact it does make me wonder if you were in blast phase when diagnosed. Do you know the percentage of blasts in your marrow when you were diagnosed ? If you were not in fact in blast crisis then there is no rush for transplant and you can take time to explore your options. There are different types of transplant, you could have a reduced intensity transplant without the total body irradiation for example if you were in remission with Glivec. There are many options, second generation tkis [Glivec being 1st]. your treatment will depend on how advanced your disease was at dx.
I know all this must seem all a bit too much for you right now after diagnosis but you need to be armed with all the facts to enable you to make an informed decision on your treatment.
All this is not easy but there is plenty that can be done to get rid of CML.
Take Care
Elizabeth

Dear Rebecca,

It might help you (and us) to better understand your exact situation if you asked your doctor what the % of blast cells were in your marrow/peripheral blood at diagnosis and what he considers to be the best therapeutic option in your case.

Usually BC-blast crisis- is determined by more than 30% blast cells present in your marrow and/or peripheral blood.

5%-20% blasts usually signifies that the disease is entering or is already in AP-accelerated phase.

Blast cells at 0-5% is considered CP-chronic phase.

No matter what, your counts should be closely monitored so that if imatinib/Glivec fails to control the disease, then it might be that he would then recommend transplant.

From the information that you have given on this forum,at least from the posts that I have seen, there is no reason to question your diagnosis of Ph+CML in Blast crisis and therefore it is understandable why Prof.Reilly is recommending that you look to transplant, even though you have initially responded well to Glivec 800mg.

I am sure he is very well aware of the current options open to PH+CML diagnosed in Blast crisis and I would be very surprised if you were given the wrong diagnosis...

Current data shows that very few people with CML in Blast Crisis maintain a significantly long term response to Glivec (or other 2nd generation TKI's).

You should ask your doctor if that is why he considers that you will need to consider a transplant in the near future and if a search for a suitably HLA matched donor has already started.

You could also ask the following questions:

1.What was the % of blast cells in your blood/marrow?

2.Was your spleen enlarged and/or were there any other indicators that pointed to your disease being in BC?

3.Why does he think you need a stem cell transplant given your good response so far to imatinib/Glivec?

4.Are there reasons (say from further tests) that he believes that you will not continue to hold your response to imatinib over the long term...
ie is there any evidence of a drug resistant mutation or clonal evolution which would mean you would not hold your response and would not respond to another 2nd generation TKI like nilotinib or desatinib?

5.Should they find a suitably matched HLA donor, what sort of stem cell transplant would he recommend in your case?

6.Would he recommend a reduced intensity transplant (RICsct) like those currently being studied at centres like Hammersmith, Birmingham and Newcastle, amongst other UK transplant centres?

7.If not then what does he consider to be the preferred option for you... and why?

8.What are the number of transplants performed at Sheffield on a yearly basis?

9.Would he support you if you wanted to opt for a RICsct, if not at Sheffield then at another centre?

10.Would he support your seeking a second opinion?

I do hope this list gives you some ideas for questions

Sandy

Dear Rebecca,
You doctor is indeed very well respected haematologist with an research interests in 'the pathogenesis and treatment of both chronic and acute myeloid malignancies'.

I think you are absolutely right to have confidence in him as your treating clinician

Sandy

I had my weekly appt today and all is still fine with blood test, I'm still anaemic though, but it's improving slowly. The best bit is that because of the consistant results I've been given 3 weeks off!
With regards to the % of blasts in my bone marrow, I gave lots of thought as to if I should ask or not, and I decided not to. I know that at the start of all this the % of blasts in my blood test was between 20 and 30%, and now its 0, and that's good enough for me at the moment. I have decided to wait until my next bone marrow test to find out the % then I'll feel good if they've come down, instead of stressing about knowing the figure now. I hope this makes sense.
Thanks for all your help in this testing time,
Rebecca

Dear Rebecca,

Do you mean 3 weeks without having an appointment?
You are following your instincts and if you feel you do not need to know too much detail about your blast cell % at this time then that makes perfect sense to me ;o)

Given your blast cell % at diagnosis was between 20-30% I would regard this a positive news. Some clinicians would regard that sort of % as AP-accelerated phase (the phase that I was diagnosed in 10 years ago) rather than BC- blast phase.
So in my, inexpert, opinion you should consider this to be good news.

It is a steep learning curve that you are on and you need to take things at your own pace. If you need further advice do not hesitate to ask. Meanwhile, try to take a rest from all the stress. You have responded very well to imatinib.

Best wishes,
Sandy