Struggles of finding a matching Donor.

Hi Hudson

The pains could be as a result of the TKI treatment as opposed to the CML going into the next phase. Have you had a recent blood test? If not you would be advised to contact your consultant and arrange to have one done to at least put your mind at rest about the CML. What TKI are you on?

Karen

If you are worried you could ask for a bcr/abl test just to put your mind at rest. Can I ask why you changed tki?
K

Hi Sandy,

Thanks for your concern, i have managed to answer as you requested hope the information is sufficient.

1. You say you have changed from Dasatinib 100mg to high dose imatinib- was that because dasatinib did not control your disease or for another reason?
• During that time I was on Dasatinib, then my medication was stopped for 1 week to let my count normalize. It was after that period that I was started on Imatinib, 800mg, which I used to take 800mg once daily, however the pharmacist advised me to 400mg twice daily which am doing now.

2. Your platelet count seems very high- although your latest one is lower (normal range is 200-450).... for how long -before you changed to HD imatinib- was your platelet count above normal?
• On 24th Jun Platelets counts: 358.0 And WBC counts: 5.1
• On 08th Jul Platelets counts: 168.0 And WBC counts: 2.9

3. Have you been given any test results other than CBC?
• I did BCR/ABL mutation analysis, FISH studies. Cytogenetic analysis.

4. Since you started treatment, has you oncologist ever told you that you have had a cytogenetic response?
• I did cytogenetic tests and the results indicated negative.

5. Are you actively looking for a donor because you are not responding well to TKI therapy?
• My Dr. did for me BCR/ABL mutation analysis which indicated low response to treatment. And the fact that when Bone Marrow aspiration and biopsy, FISH and BCL/ABL tests were carried out in May 2014, they indicated the Cancer was in accelerated Phase.

Hope to hear from you soon.
Regards,
Hudson

Hi Hudson, thanks for the answers.

1. I assume dasatinib did not control you counts which is why you were put on High Dose imatinib rather than resume therapy with dasatinib after your counts recovered?

I also assume from what you have said that the mutation test identified a dasatinib resistant mutation?

2. Platelets/whte cells on the low side when you were taking dasatinib? Then started to rise (24th june result) and have continued to rise since?

3 and 4.
At what point in your treatment did you lose your cytogenetic response? And why did you doctor change your therapy from dasatinib to imatinib?

5. Is this why your doctor says you are now in accelerated phase.?
Please note that accelerated phase shows blast cells in the peripheral blood... up to 20%. Do you have evidence of blast cells in your blood?

I assume your doctor is looking for a donor through the international registries? Have you considered double cord blood as a possible way of finding a HLA matched donor.

This can work very well when adult donors cannot be found.

Where are you being treated?
Sandy

Hello Hudson,

Glad to know that your counts are moving down after doubling gleevec. .

1. What was your numbers at the time of diagnose?
2. HAve you ever reached Ccyr ( pcr value 1% ) any time during the treatment?

All the best

Thomas

Hi Sandy,

Yes its a possible, and finding a place where new hope of life can be bestowed to me, would be a sigh of relief. i was perturbed when my Dr talked of re-administering hydroxyurea.

Prior to the intolerance i was on Dasatinib 100mg, which which was administered to me after a failure of Nilotinib 300mg.

The latest results as of 27th Aug 2014.
WBC=11.5 Platelets=390.0
However i was informed that the Neutrophils count was slightly High.
As for the Peripheral Smear i received a call from the Lab, indicating that it was negative, <>

For the Updates regarding a hospital sure I'll. Because am grateful for the kindness and time you dedicate to strangers like me.

Regards,

Hudson

Dear Hudson,

Data shows that in some patients with progressive disease that compared with nilotinib and imatinib, dasatinib is very useful. Nevertheless, it looks from your latest results that high dose imatinib (400mg x 2) is exerting some effect on the control on your disease.

Your latest results show you WBC is not high (still within normal range) and your platelets are also within normal range. The differential of the white cells may indeed show higher percentage of neutrophils vs other lymphocytes, but the range can vary considerably and if you have an infection then it could cause the neutrophils to rise slightly.
It might be helpful for you to take a look at this section on our FAQ page which outlines the reference values for blood counts etc:

http://www.cmlsupport.org.uk/faq_normalbloodcounts#CBC

Your latest peripheral 'smear' says you are negative - does this mean they could not see any PH+ cells? If yes, do you know what kind of test the lab used- i.e.cytogenetics/FISH or Q-PCR? If so was it either Qualitative PCR OR Quantitative PCR?

The difference between the 2 kinds of PCR test is important.
Qualitative PCR will only confirm or deny PH positivity in a given sample.
Quantitative PCR is the one that tells you 'how much' disease is actually present in a given sample. So this is the test that CML patients should be monitored with over the long term to see how well they are responding to therapy.

I agree that you should not accept treatment with hydroxyurea, as this drug does not have any effect on the PH+ cells and therefore on CML, IT only controls high white cell counts in general and is therefore only palliative. I would insist on remaining on a TKI until your disease status becomes more clear and/or you find a compatible donor.

Is there any possibility that you could travel to find a CML expert clinician who would at least give you a second opinion? Obviously I am not sure of your insurance situation but if this is possible it may be a good idea.

Good luck,
Sandy