Hi- Rob's last 4 PCRs have beeo 0.3, 0.4, 0.2 and 0.2.He was diagnosed 3 1/2 years ago and has been on Dasatinib for 18 months. We saw one of Graham Smith's team at Leeds last week and were told the results are not where they need to be and have more or less plateaued over the last year. Rob has two well matched sibling potentialdonors and we were told that transplant is still an option we should consider. Although we realised Rob's PCR needs to be lower we hadn't thought them so bad that transplant was still a realistic proposition. We understand that as they haven't changed a great deal in the last year the time may have come to look at other options. Just wondering if anyone has any words of wisdom? what were other people's PCR histories before they went for transplant and is 0,2 'bad' enough to go that way or should he persevere with dasatinib?
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Pcr
Hi Sal,
Rob is in CCR and very stable. Why would you change this treatment and try one that has a mortality rate that is way too high for my liking.
In a recent teleconference, Dr. Brian Druker has said that all a CML patient needs to survive long term is to be at CCR. Does Rob's doctor have any evidence (published papers) that this is not so.
I don't know about Dasatinib, but with Gleevec, the PCR value tends to get lower over time.
I don't know of any CML experts that would transplant a patient who was stable and in CCR. Even if he did show signs of relapsing, there are several new drugs that I would try before going the transplant route.
Zavie
Zavie Miller (age 70)
67 Shoreham Avenue
Ottawa, Canada, K2G 3X3
dxd AUG/99
INF OCT/99 to FEB/00, CHF
No meds FEB/00 to JAN/01
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
2.9 log reduction Feb/07
3.6 log reduction Apr/08
3.6 log reduction Sep/08
e-mail: zmiller@sympatico.ca
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-282-0204
Yahoo ID: zaviem
YM: zaviemiller
Skype: Zavie Miller
Zavie
Thanks so much for you quick reply which was very reassuring. Rob is really well on Dasatinib and we would not want to rock the boat. With three young children transplant is something we want to avoid at all costs. The doctor we saw was a member of Graham Smiths team but maybe she didn't explain things clearly or we misunderstood her. Having had consultations with Dr Smith previosly the advice we were given last week did seem to conflict with what he had previously told us. I do think it is a problem seeing different drs every time, you can end up getting mixed messages. We are grateful for the reassurance.
Sal
Hi Sal,
has there been any suggestion of increasing the dose Rob takes? I am not sure that there is too much data on dasatinib and better pcr responses with increasing the dose, however I do agree with Zavie that it is quite a leap to suggest a transplant at this point. There is also the option of nilotinib... has a change to this drug been suggested? I suppose when one has not one but 2 matched siblings it is always going to be 'on the table'.... there is some very good data on RIC transplants though, especially with sibling donors and low levels of residual disease pre-transplant, so it might be something Rob could consider at some future point after he has tried all the drug options though.
If you are not attending the UK Seminar this Saturday (and there are still a few places left) then if you like I will ask a question on your behalf. Let me know,
best wishes,
Sandy
Hi Sal
Interesting post. I have achieved PCR value of 0.2 having halved from 0.4 in 6 weeks, I am very happy having waited 12 years for this to happen. All thamks to 2 years on Dasatinib and 5 years on Glivec. I did ask what we would do if I ever managed to reach absolute zero, and was told that the plan would be to keep stable at zero for a period of 2 years or so, and then possibly stop the drug and see what happens. There is a thought that patients who have used Interferon Alpha in past treatment and using residue from this could well develop and immunity to cml re-occurring. Good news indeed as I am too old for non-related donor transplant and I do not have a matched siblng, still knew that for the past 12 years, but this latest info could be fun.
Have fun and keep smiling
Keith