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PCR levels have gone up and possibility of a stem cell transplant

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Hello everyone, I haven't been on here for a while and thought I would just share with you what is happening with me. I am being seen at Kings and am currently on Bosutinib. I have tried all the ither drugs, Imatinib, Nilotinib and Dasatanib with my counts gradually reducing but not quick enough for my Dr. I started on Bosutinib in Jan 15 on 300mg with no decrease on the PCR levels. The dosage was then increased to 400mg which finally saw a drop to 0.31 which has been my lowest yet! I had my recent bloods done and the counts have jumped up to 1.8 which was very disappointing and Kings thought it might be a blip. I had another test done and the result came back as 1.8 again which has worried me. I am due to go to the hospital on Monday to have a bone marrow biopsy done to find out if I have developed any mutations. Over the last two weeks I have felt more tired than usual and have had a number of ulcers appear in my mouth which I find unusual or just coincidence?! My full blood count test was done which shows everything on that front being ok. I don't know if I will have the option of increasing the dosage of Bosutinib to 500mg? I do have a sibling donor which I am thankful for but was hoping I didn't have to go down the transplant route especially as I thought Bostunib was looking like working for me. Thanks for taking time in reading my story and please let me know if any of you are in a similar situation or would like to tell me about how you transplant experiences have gone as that is back on my mind again 2 and a half years after being diagnosed. G

Hi,
Your situation sounds very familiar - the same thing is happening to me.Diagnosed over 2 years ago, I have been on bosutinib for over a year after failing to respond satisfactorily to imatinib and nilotinib. Started straight away on 500mg/day and after few ups and downs my pcr went down to 0.22 last November. However it's now gone up again to 0.66 in February and to 1.5% this month. My blood counts are all ok. So far I haven't heard anything from York or from Leeds (I'm in shared care between the 2 hospitals), just that my case will be discussed. I already had 2 mutation analysis, both negative. I feel fine and fortunately I'm not a "worrying "type of person so I carry on as normal but I would really like to know what the doctors think. At least you get a better response from Kings. I have no sibling match, my brother was tested and we are totally incompatible so I'm even less keen than you to go down the transplant route with an unrelated donor. There is still ponatinib but I am not sure I would be eligible as I don't have a mutation.

Anyway try not to worry (easier said than done) and I hope you will get an answer soon

Best wishes

Luisa

Hi Luisa,

So nice to hear from you and reading your response. Just to start with I had a bone marrow biopsy done today at Kings and should get the results in 2 weeks time. Its so good that you have the 'not worrying' type of personality and I am the same but have my bad days as we all do. I have also tried to keep my mind off it over the last 2 years with getting married, moving house and having a baby (8 months now)! I'm sorry to hear that you don't get the kind of responses and updates from your hospital and can imagine this would be very frustrating. I will have to wait 2 weeks for my results to see what the next stage will be. Speaking to the nurse today she said that transplants have come on so much to what they used to be and this is with both sibling and stranger donors. I will keep you updated with what happens with me. Please let me know how you get on.

Try no to worry too :-)

G

I was diagnosed a long time ago and before the likes of imatanib etc.

I was on anything and everything available at that time and including interferon A and all to no avail.

I ultimately had a matched unrelated bone marrow transplant. It was 19 years ago last month. Done at Leeds. All my treatment is managed from there.

In my case though after about 5 or so years came the development of better blood testing and it was discovered that BMT wasn't "curative" after all and I had readings that indicated I still had CML.

Fortunately for me that coincided with the development of glyvec and so I went on that in trial and have been brilliantly well since then.

I wish you all the very best

Hi,
You are not yet at the full dose of bosutinib (500mg) so if I were you I would want to try that before making any decision to go to transplant.
If your mutation test (which I thought could be done by peripheral blood rather than needing an aspirate or biopsy) does show you have the resistant mutation T315i, then there is always ponatinib to try.

Although stem cell transplantation has indeed seen a big improvement over the last decade, it is still a rather gruelling thing to go through. Back in 2003 (before 2G TKIs were available in the UK) my clinic identified I had an imatinib resistant mutation, so the only option at the time was a stem cell transplant. Even so I did not want to go for the traditional protocol of high dose chemo'therapy' (sic) and total body irradiation (TBI). Hammersmith were at that time running a study on reduced intensity transplantation (no TBI), supplemented with imatinib for 12mths post transplant and then to round off with immunotherapy in the form of donor lymphocyte infusions as and when needed.

You can read more about this protocol and my experience of RICSCT on my transplant diary...see blogs and journals on the main menu. It was the answer to my problems as they were then.... but if I had the choice today I would still opt to try all the available TKIs before making such a decision.

RICSCTs plus post transplant DLI are very good and effective alternatives and are certainly safer in terms of mortality rates than the traditional high dose protocols.

I hope you have some more clear answers about your PCR ratios etc. soon.... but remember ponatinib is there if you have a particular multi drug resistant mutation (T315I), and if you live in either Scotland or Wales it is available for all indications, not only T315i.

Sandy