7 replies to this topic

[Gaylemarcy]

     Diagnosed two years ago, up to June showed significant improvement.  Quantitative RT-PCR is showing an increase trend in BCR/ABL.  July 1, .19%; Sept 1, .72%; November 1, 1.24%.     Normal Nuclei 100%. 

I was on Gleevec upon diagnosis, for four months; it was unable to control the Platelettes and WBC counts, Tasigna caused irregular EKG's therefore Sprycel was prescribed in July 2010.  I hit normal plate, wbc, rbc in August of 2010 with very little side effects!  A few weeks ago, I had excrutiating bone pain and called oncologist.  He ran an MRI and took me off Sprycel temporarily.  Upon the recent increase from the PCR, he is suggesting a transplant. 

I am 33 years old, my sister has a perfect HLA match and my brother is 50%.  I am a mother of four, eldest will graduate high school in June of 2012.  I have asked to exhaust all options prior to transplant, he noted that we kind of already have, yet promised to look into trials!  I work full time on top of being a very active Mom, I worry about the recovery time! 

What would you do?  I am so AFRAID of a BMT for some odd reason.  I guess more afraid of the unknown. 

[PhilB]

Hi Gayle,

Transplant outcomes keep getting better and better, particularly with a matched sibling, but there are at least two other good drugs out there to try which have been having really good results - bosutinib and ponatinib.  The first is, I believe, very close to being licensed and the second has been having really good results in trials succeeding in a lot of cases where all other drugs had failed.  It's definitely worth checking them out, but is your problem resistance or intolerance?  Is it only since you stopped the Sprycel because of side effects that yourPCR has started to rise?

[Gaylemarcy]

Sprycel and gleevec are resistance.  Tasigna is intolerance.  Numbers  showed increase from June - nov 1.  Wasn't taken off meds till nov 11th. 

[tranier]

     Hi...my 21 year old son is 22 days out of transplant and doing well...This Sunday (yes rescheduled) at 6:30 he will be in a segment on NBC nightly news from two weeks ago.from the transplant floor at Cleve Clinic so you'll see how well he looks about a week post transplant...However, and everyone knows my mantra, we had no other choice...blast crisis and 3 opinions...I would  get 2 other opinions (the third one if 2nd is opposite your oncs!)  If we could have tried the other two drugs we would have!  I do believe transplant is last resort and since you have sibling match you won't have to worry about timeframe with unrelated....I'll be keeping you in my thoughts and prayers....Tracy

[Sneezy12]

Were you tested for mutations, and was a FISH done? Frank

[CallMeLucky]

What do your Cytogenetics show?  Have they done a bone marrow biopsy?  Have you lost CCyR?  Be careful making such decisions based on a PCR test.

The fact you have a sibling match and your age are all good factors that would indicate you should get through a transplant, but it is still a risky procedure and with the treatment options available for CML it should be used as a last resort.  What dosage of Sprycel are you taking?

As mentioned above, you should have a mutation test.

Before agreeing to a transplant you should get a second opinion from another hospital, preferably from a top CML doctor/hospital.  Where are you located and where are you being treated now?  Are you seeing a CML specialist or a regular oncologist?

If you need a transplant, then so be it, but I would get another opinion before going that route.  Assuming you are taking 100mg Sprycel, I would also want to try going to 140mg and see what happens.  I would also explore ponatinib on compassionate use depending on results of mutation analysis.

Best of luck.

[Trey]

The "Normal Nuclei 100%" would show that you are still in CCyR, and your PCR is up less than 1 log.  So there is no urgency to rush into BMT based just on that info.  If you had high risk factors at diagnosis, that might come into the decision process.  You might want to read this:

http://community.lls.../message/101600

[scuba]

Gayle - it seems to me from what you have written that you were taken off Sprycel and your PCR went up.  Unless there is more than what you have written, that's not a surprise.  And since you are cytogentically clear (0% PH+ cells), a BMT makes no sense.  Simply go back on the Sprycel and monitor your PCR.  There's a good chance it will simply go back down again.  You have plenty of time to make the BMT decision.  There's no need to rush this.