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What does this mean?

Hi all,
I haven't posted on here for quite some time, but I could do with some help if possible. I was diagnosed with CML in Feb last year. I had three TKI's Imatinib, Nilotinib and Dasatinib and was intolerant to all 3. I then had a unrelated donor Stem Cell Transplant at the end of October last year. Now apart from the odd virus and some graft versus host I seemed to be getting somewhere. Then at the beginning of May I had a BCRABL check done, which showed the cancer had returned quite aggressively. I was started on Bosutinib 4 weeks ago to try and bring things under control. Then in an appointment two weeks ago I was told that the BCRABL had risen to 55% which freaked me out I must admit. I was then told that the reason for the return was that some cells had mutated. I was also told that I had 2/10 cells with clonal evolution of chromosomal 3 abnormalities. I haven't got a clue what this means, and the doctor is very helpful in explaining things but I am very frightened and confused. Does anybody understand this or have dealt with it before.
Any help would be appreciated.

Regards from one very scared person !!
Mark

Sounds like you've had tough 2 years, cant help with your question but just wanted to day hi, sure all here are with you, and that sandy / someone can help. Nigel

Hi Mark,

So sorry to hear you are suffering from such a complex set of complications as well as transplant relapse. I know very little about the effect that an additional chromosome 3 abnormality has on treatment outcomes in CML other than it is relatively rare.
It is seen in some cases of MDS (myelodysplastic syndrome) either as a primary or secondary abnormality (possibly treatment related?).

Are you now being treated for CML? If not what does your doctor suggest.... another sct, DLI from your donor, TKI therapy? I know you say you were intolerant of TKIs prior to transplant, but dasatinib and more recently ponatinib have both been shown to be effective in AP and BP CML- and ponatinib has also show to be effective in PH+ AML.

The following link might be helpful for you to do some research- I briefly searched for clinical studies for Relapsing Chronic Myelogenous Leukemia and came across the following:

http://www.cancer.gov/cancertopics/pdq/treatment/CML/HealthProfessional/...

and this:
A clinical study Phase I/II - using dasatinib and decitabine (a chemotherapy given by infusion- recently approved by EMA although NICE has not - as yet)

This study is in the US (MDACC- Houstonit ) so might not be applicable for you on those grounds alone- but it might give you some information so the you can talk to your consultant about this as a possible strategy for your case.

I assume you are being treated at an expert CML centre? If so, which one?

Please try not to be scared- easy to say- but fear often stops us from finding out and understanding exactly what is going on, and so effectively stops us from being proactive.

I hope I have been of some help, but as I said, I know very little about the complexities of your case or of other chromosomal abnormalities in CML. You should talk to your doctor about 'what next'-
Donor Lymphocyte Infusion?
Dasatinib alone or in combination with another agent?
Ponatinib?
Something else?

Sandy

Hi Sandy,
Thank you for your reply and all the information you have supplied, it has got me thinking. I will have a look this evening at the link that you have given me.
I am currently being treated at the Leukaemia centre at the Queen Elizabeth in Birmingham where i had my transplant. The consultant that I am dealing with has been very helpful and has suggested that I may need a course of DLI, but i need to be off my anti rejection drug, and every time they lower I end up with GVHD and they either have to keep it at the same level or increase it. The TKI I am on currently and the DLI are the only options my consultant has discussed with me so far. I am going to see him on Wednesday as I want to know what impact the Chromosone 3 abnormality will have on my recovery, and what does it exactly mean.
I too found some information on MDS, but only read a small amount partially as it is quite complicated and also because the site I read didn't give a very favourable outcome, which was a bit scary.
I really feel they need to give me a lot more information about what is happening and what can or can't be done, even if it isn't very nice to hear.

Thanks again and I will keep in touch.
Regards

Mark