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SCT next February or March
Hello Johnny,
I'm sorry to hear your PCR result is riding high. Can you give some background on which TKIs you have been on? Having a good match and being young are both positives for a successful SCT. However, I'd like to make sure you've exhausted all TKI opportunities before you embark on this journey.
Chris
I started on Glivec and lost a very quickly attained MMR. The dose was increased and no change was seen, so they put me on Nilotinib. Since taking this, the BCR-ABL levels shot up every test, so I've been taking Dasatinib for two months in the hope it will control things until the transplant.
Third line treatments are not an option in Wales, so the head of the transplant unit recommends I go through an SCT.
Have you had a test to rule out a mutation? If you have multi-drug resistant T3l5i or one of the other p-loop mutations then either ponatinib or bosutinib would be an option..... even in Wales. I see no reason why you cannot ask for this test?
SCT is an option of course... I had one, but you need to get yourself to the best place possible.
Not sure where you are being treated?
Sandy
The mutation test was negative, so the head of the transplant team in Cardiff recommended a SCT. What can I expect after the procedure? I'm thinking of going for a mini transplant as the risks of dying from infections are considerably lower.
See my transplant diary here
http://caringbridgeclassic.org/europe/sandycraine/
Sandy
Hi Johnny,
Last Wednesday there was a meeting in Cardiff of the All Wales Medicines Strategy Group (AWMSG) which discussed ponatinib for use in:
‘..the treatment of adult patients with: chronic phase, accelerated phase, or blast phase chronic myeloid leukaemia (CML) who are resistant to dasatinib or nilotinib, who are intolerant to dasatinib or nilotinib and for whom subsequent treatment with imatinib is not clinically appropriate, or who have the T315i mutation’
The AWMSG meets regularly to discuss assessment reports that seek to establish the clinical and cost effectiveness of drugs. The assessment reports are prepared for them by another body, the All Wales Therapeutics & Toxicology Centre (AWTTC).
The outcome of the AWMSG meeting was a recommendation to the Minister for Health & Social Services in Wales to approve the use of ponatinib for routine use by the NHS in Wales.
The recommendation is that ponatinib should indeed be made available for use for the treatment of CML in Wales as described above, as in the second paragraph.
We are waiting to hear if the Minister has formally 'agreed' the AWMSG recommendation- a decision which we believe is imminent.
I would advise you to speak with your doctor to discuss whether this would affect his recommendation that you go forward with an SCT- especially as it is not planned to take place for at least 3 months. Maybe he/she would agree that a trial of ponatinib would be a good idea to see if this TKI has better effect in your case, before you commit yourself to an SCT? It would be evident quite quickly, from more frequent PCR testing, whether it is working or not.....at least you would then have tried all the TKI options apart from bosutinib.
Sandy