First I wanted to say how helpful I have found everyone's postings. I have often had questions and was able to quickly find answers because of the outpouring of answers to people on this site. Its pretty amazing. I now have a few specific questions that I was hoping to get some feedback on.
My husband was diagnosed with CML back in 9/12. While he was shocked at the diagnosis, he hadn't been feeling great for a couple of months so had gone to the doctor for some answers.He has been taking Tasigna since 10/12. He had some trouble with his blood counts in the beginning (particularly low platelets) so the dose was adjusted at some points but he has been tolerating the standard dose for at least 4 months now.He has gone through 4 pcr/fish tests and I think the doctor (a CML specialist) has been inconsistent in her advice regarding the results and was hoping for some additional opinions.
Bone Marrow Biopsy:- from hematologist in local CT hospital
Positive for BCR/ABL rearrangement (95% of cells) consistent with chronic myelogenous leukemia (Major breakpoint 3.088%, Minor breakpoint .002%)
FISH - a positive hybridization pattern, without loss of ASS, was present in 95% of the cells scored.
Unable to obtain smears so could not evaluate the number of blasts.
9/24 - follow up visit with CML specialist and results are based only on blood draw with a different lab from the 9/20 results. All subsequent results are from this lab.
Positive for BCR-ABL (P210) transcripts, indicating presence of CML-type Philadelphia chromosome. After normalization with a positive control cell line K562, the level of positivity for BCR-ABL is approximately 39.1%
FISH Analysis: Ph positive cells: 98%; ph negative cells 2%
Took Hydroxyurea for about 1 weeks prior to official report (very high wbc count at initial visit - around 450k) and then started Tasigna.
Positive for BCR-ABL (P210) transcripts, indicating presence of CML-type Philadelphia chromosome. After normalization with a positive control cell line K562, the level of positivity for BCR-ABL is approximately 7.2%
DR ADVICE: Expected much more of a decrease during this period. 1 log reduction is not the expected or desired response. Other doctors would switch medicine at this point but he should continue with Tasigna for 3 more months.
FISH Analysis: Ph positive cells: 2.4%; ph negative cells 97.6%.
DR ADVICE: The FISH test came several days after the PCR. The nurse then conveyed the doctor was pleased with the results and not to worry. We were completely confused at this point.
Positive for BCR-ABL (P210) transcripts, indicating presence of CML-type Philadelphia chromosome. After normalization with a positive control cell line K562, the level of positivity for BCR-ABL is approximately .85%
DR ADVICE: Pleased with BCR-ABL results even though its only another 1 log reduction. When asked about initial concern that results were not dropping fast enough, dismissed concern. Forgot to order FISH test but would run that based on blood drawn at visit.
FISH Analysis: ph positive cells: .6%; ph negative cells: 99.4%
DR ADVICE: Nurse calls with results indicating doctor is not pleased that this was not 0. PCR results are not addressed and requests follow-up test in 6 weeks. At the time of this call, we are completely puzzled because at the last set of results, PCR seemed to be the focus of concern. This time, with another only 1 log reduction, she is not concerned but with a FISH test of .6%, the concern returns.
Fish Analysis: ph negative cells: 100%
Positive for BCR-ABL (P210) transcripts, indicating presence of CML-type Philadelphia chromosome. After normalization with a positive control cell line K562, the level of positivity for BCR-ABL is approximately .143%
DR ADVICE: Pleased with FISH test. Not thrilled with PCR. Again, indicates that some doctors would switch medicine at this point but since numbers are dropping, is comfortable waiting another 3 months. Provides no guidance on overall prognosis based on rate of response and indicates will be attending a conference and will discuss this less than desirable response rate. Does not think there is a mutation as he has responded to the medicine.
The side effects from Tasigna have declined dramatically for my husband (particularly in the last month of so). The particularly bothersome side effect of a "fuzzy head" has basically disappeared after several months of being present. It at all possible, he would like to remain on Tasigna but also wants to achieve the best overall outcome.
1. Does anyone know how quickly the optimal time to achieve a 3 log reduction on Tasigna? The initial local doctor indicated 1 year. The CML doctor has said that is incorrect but hasn't provided any other guideline.
2. Based on my very limited knowledge, it seems he is moving in the right direction at a reasonable rate and should hold out for another 3 months. Would others be pushing for a drug switch at this point?
3. Is there a correlation between how quickly the log reductions occur and (1) the overall prognosis and (2) the likelihood of the drug continuing to work long term.
Any thoughts would be very much appreciated!
All the best,