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PCR up and down..is a transplant the way to go??

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I am new on this forum. Have been on the US CML forum and am still on there as well but wanted to get info/opinions from here as well. Have heard a lot of good things about the UK forum.

My son has been on 600mg Tasigna since Nov., 2016. He was switched from Sprycel to Tasigna because The sprycel was wreaking havoc with his platelets. His PCR slowly started coming down. May, 2017 it was .04. But it's been bouncing up and down since then. His PCR results since May are .04, .18, .07, .14, .26. The .26 was his results from a retest last week. His Onc also did a mutation analysis last week which came back negative. So because this retest came back at .26 he's scheduling a SCT re-evaluation. He's also contemplating switching him to Bosulif, but isn't sure on that because of the adverse side effects his patients have had on it. His Onc really thinks we need to strongly look at transplant because it's going on 3 yrs.(July) since DX and he says he is not where he should be by now and appears he's not responding very well to the meds. I'm really kind of struggling with the thought of him going through transplant. Would it be safe for him to wait a little longer and keep retesting to see what his PCR continues to do? Or is it really time for a transplant? What are ya'lls thoughts?

DX..July,2015..PCR..100..started on 100mg Sprycel

Sept. 2015..same as at DX..switched to 140mg Sprycel

Nov. 2015..PCR 31.8

Dec. 2015..PCR 3.4

March 2016..PCR 1.8

May 2016..PCR .89..platelets low, med break

June 2016..platelets low again, second med break

July 2016..PCR 1.67..low platelets, 3rd med break

July 2016.. FISH..negative

July 28, 2016..switched back to 100mg Sprycel

Aug. 2016..PCr 2.0

Sept. 2016..PCR 1.21

Oct. 2016..PCR 1.7..switched to 600mg Tasigna

Dec. 2016..PCR .87

Jan. 2017..PCR .809

May 2017..PCR .04

Aug. 2017..PCR .18

Nov. 2017..PCR .07

Feb. 2018..PCR.14

March 20,2018..PCR .26...Mutation Analysis..negative

 

 

Hi there

I'm no expert by any means, but I really think that it is too soon to even consider a transplant, if I am reading your question correctly.  If your son is currently at 0.26% (i.e. 26 BCR-Abl cells out of 1 000) that is way below a complete cytogenetic response (1% or lower) and I would say he is doing quite well!  I have read many articles by prominent CML specialists who say that a durable complete cytogenetic response is a "safe harbour" and that they would not even change the treatment in the case of a patient who remains below that 1%.  I am currently at 0.08% and my doctor is very pleased with my progress.

Maybe someone else who is more knowledgeable can advise you better, but I am surprised that they are talking about a transplant.

Best wishes

Martin

Hi, i think tour son still have many options before had a transplant. Maybe the transplant talk it's just part of a protocol to have everything prepared just in case. Your son's result are likely a plateau, not a loss of response, i would make sure that he's totally adherent to therapy. If the results continue to climb, he can have a higher dose of tasigna (800 mg - i know a goy who wasn't doing very well on 600mg but reach a stable mmr on 800mg), a change to bosutinib or ponatinib and even the clinical test of abl 001 (wich seems to be a very good drug and soon will be approved). Good luck!

Thanks for your reply and encouragement! Yes, you did read my question correctly. His last test he was at 0.26%(PCR).  I think it's time we have a good sit down meeting with the dr. to discuss some things. The majority of the replies I'm getting here and on the US forum are all saying my son is doing well and he shouldn't need a transplant at this point. I'm making a list of questions for the dr. and we probably will be meeting with the transplant dr. to get their opinion and possibly see about getting a second opinion from another dr.

Thanks for your reply and encouragement! The 800mg of Tasigna is one of my questions for his dr. The Onc has never mentioned that he could up the dosage. Trey, over on the US forum also thought he likely reached a plateau. But again the Onc never mentioned that this could happen. I'm making a list of questions for the dr. and I think we will be having a discussion with the dr. We will probably still meet with the transplant dr. to see what their opinion is and possibly check in to getting a second opinion from another dr.

Hi again

I really believe that your son is in a good place with 0.26% and that all this talk of transplant is premature.  Are they perhaps considering it because he is reasonably young and they are hoping for a permanent cure?  My own doctor was pleased when I reached 0.24%.

I'm attaching the citation of a very good article I read that discusses patients who reach below 1% (CCyR) but who don't reach below 0.1% (MMR).  A quote from it reads:

"none [out of four major studies done] reported significant differences in survival in patients in CCyR by whether they did or did not achieve MMR. The reason CCyR became the gold standard for a favorable response to therapy in CML is because it is associated with a survival advantage. This is not the case for achievement of MMR. At present, achievement of CCyR remains the goal of TKI therapy in CML, although the additional achievement of MMR may protect against a higher probability of events and, to lesser extent, of transformation to the accelerated or blastic phases."

The article citation is:

Considerations in the Management of Patients With Philadelphia Chromosome–Positive Chronic Myeloid Leukemia Receiving Tyrosine Kinase Inhibitor Therapy

Hagop Kantarjian, Jorge Cortes
J Clin Oncol. 2011 Apr 20; 29(12): 1512–1516. Published online 2011 Mar 21. doi: 10.1200/JCO.2010.33.9176
PMCID: PMC4979098

Dr Cortes and Dr Kantarjian are two of the world's leading experts in CML and I would really trust their opinion that below 1% is and remains the gold standard for a good response!  Believe me, I struggled for two years to reach MMR, was quite disappointed and worried by my own slow response and this article (and many other like it) provided me with a great deal of comfort!

Best of luck to you and your son.  I think it may even be harder being a parent of a CML patient than being the patient himself!

Martin

Hello janlyn28, my numbers have been in a similar state the last year or so. I am on Sprycel and considering switching to a third generation TKI (asciminib) did your sons numbers eventually go down on Tasigna or did he end up having to switch?

A bone marrow transplant is an absolute last resort. It is dangerous and can kill. The only reason to do a transplant is when everything else fails.
Your son is no where close to failing therapy. He is in cytogenetic remission (PCR < 1.0 %). Survival once a patient achieves this level is over 95%.

The question your docs need to be answering is finding the "sweet" spot for therapy either by rotating drugs or experimenting with dose. And high dose does not necessarily lead to better response. This is certainly true of dasatinib (sprycel) where lower dose can actually improve response.

What is your sons blast cell count? if it is very low or even zero, he has plenty of time to "tune" his medication to attack CML more thoroughly. In addition, using nutrition to assist therapy can be quite effective as well (i.e. Curcumin, vitamin C, D3, K2, selenium, etc.).

Am I missing something on this thread? Janalyn28's original post was done in 2018 and yet we have a couple of current answers from 2024. I can't find anything new from Janalyn since 2018 on this thread.