You are here

Blast phase with AML

Categories:

Hello all,

Looking for any advice on BMT and any survivor stories of blast phase. I am a 47 yr old female in relatively good health and was diagnosed with CML October 2021, went on tasigna and met markers until summer 2022. I went on Bousitinib in Nov 2022. Had a biopsy and it showed no progression so still in chronic phase. In January 2023, I started having fatigue and bleeding. My blasts came back at 40%. I was completely shocked! Over the next several days my blasts increased to 77%. I was checked for mutations and was diagnosed with AML also. I was treated with chemo (7+ 3 protocol) and released from the hospital after 26 days. My latest BMB came back at 1.7% blasts so I move onto consolidation chemo while I wait for a transplant. 
 

questions: How bad is the chemo for the transplant? How does it compare to the 7+3 protocol? Any advice on getting through a transplant?
Any other experiences with blast phase?
Any advice would be appreciated!

Thanks for all the support,

Becca Crosby

Rebecca - By met markers do you mean you were in MMR (under 0.1 BCR/ABL), and what prompted your switch to Bosutinib and a biopsy? I have no knowledge regarding the difference in chemo but I hope someone can chime in that has gone through it and can pass on their knowledge and experience. Hoping for the best for you.

Thanks for responding. The lowest my BCR-ABL got was .8 and then it started rising while I was taking tasigna. Went up to 2.97 and then 10. Got the BMB done because tasigna stopped working so my doctor was looking for mutations. No mutations found. Switched to Bosutinib. Last time in January my BCR-ABL was checked it was at 49%. Boustinib did not work at all for me. I believe I will start ponatinib this week.

Hi Rebecca,
I am sorry you are having to deal with this turn of events. Has your clinician told you your have AML as a second leukaemia, as well as Ph+CML? Or did he/she mean that your CML has progressed to blastic phase which resembles AML?

My other questions:
Where are you being treated?
Do you have a matched HLA donor? If yes, it the donor a sibling?
Or
Is the plan to treat you with ponatinib until you find a donor?
Have you been offered ascinimib?

Sandy

Hi Sandy,
Thank you for your response. I was diagnosed with both CML and AML. I am being treated in Boise, Idaho in the United States. They are testing my siblings now, or at least have sent out the cheek swabs for them to return. I should know in two weeks if either of them are a match.

The plan is to do a round of chemo and start ponatinib. My doctor said even if the transplant is successful I will be on a TKI for two years after the transplant. No one has offered or mentioned ascinimib.

I am pretty nervous about the chemo before the transplant. The chemo I just experienced in the hospital was awful and kicked my butt. I can find facts on the transplant but I was hoping to get personal stories. The details the doctors leave out.

Thanks,
Becca

Hello Becca,

Again, let me say I am sorry you have to deal with both CML and AML .... that is a pretty rare diagnosis and it must be hard for you.

I will share my experience of transplant.
I was diagnosed in 1998/9 with CML in late chronic phase. I was lucky to have a well matched sibling donor who agreed to donate his stem cells. During the few months that I was struggling with both the diagnosis and the option of a transplant, I managed to enrol on the phase ll trial of STI571 (imatinib). I responded to imatinib for 2+ years but began to show signs of resistance so a transplant was the best option at that time. I was/am still treated at an expert CML centre in the UK which was also the best centre for transplants.

In late 2003 I was offered a reduced intensity transplant followed by 12 months treatment with imatinib to managed/control the residual Ph+ cells.
12 months on from transplant qPCR tests showed a rise in residual BCR/ABL (0.5%) I started on the DLI (donor Leukocyte infusion) protocol.
This took around another year but I have been BCR/ABL negative (consistantly 0.0001%) since 2005.

The transplant protocol included a week of 'conditioning' chemotherapy - however this used a reduced dose compared to the traditional full SCT protocol and did not include full body irradiation used in traditional transplants. Therefore I did no suffer too much, although it was hard enough!

I am not sure - given you have AML as well as CML - whether your doctor would offer you a reduced intensity SCT. So I am assuming you would have to endure high dose chemo again. Having said that, I had a friend who went in to blast phase CML (90% blasts). Her transplant was problematic due to the very high level of blasts and she had to endure high dose chemo, but she survived and I believe is still well and free of disease.

I suppose what my message is that given you are dealing with AML + CML although it seems the blasts are CML? So, if one of your siblings is a good match you need to access the best and most experienced transplant centre. I assume asciminib has not been mentioned as it is a is relatively new TKI, but it may be worth talking to your doctor about it, but hopefully the chemotherapy you have had has dealt with the AML. I hope so and wish you the best,
Sandy

Thank you for sharing about your experience with your transplant. My doctor told me it is my best chance so I am going for it. I have a 17yr old son I want to see graduate from high school and go to college.

I am sure I will have to have the high dose chemo as my disease is so aggressive. I am nervous about it but I am making it through the other chemo treatments.

Thank you for sharing the encouraging story about your friend. It is hard to find survival stories of people in blast crisis.

Thank you!
Becca