Other link: Dr. Neil Shah
New video featuring Dr. Neil Shah
Posted 27 January 2012 - 02:20 AM
A fascinating discussion by Dr. Shah. Near the end of the video, Dr. Shah does say that a consensus is emerging that stopping treatment while a patient is not in complete molecular remission (CMR: PCR = undetectable), but instead has detectable evidence of bcr-abl (i.e. PCR>0), may not lead to re-establishment of the disease.
I know there is much debate on this forum where people feel that having one cell that is bcr-abl constitutes disease and will likely lead to progression left untreated. That may indeed be the case, but I doubt it. it is noteworthy that experts in the field (Dr. Shah) are seeing evidence that perhaps that may not be true. And that PCR undetected may no longer be a requirement for drug interruption.
Dr. Cortes told me that he is more concerned about cytogenetics at the microscope level (how many cells out of 20 are bcr-abl) than he is with PCR. Having a few cells around that are bcr-abl by having a PCR > 0 may not by itself lead to disease expansion.
Regardless - once treated for CML - we will always have to be vigilant even if we go off medication (which I am determined to do). But at least we now know what to look for, how to measure it and then what to do if it rears its ugly head.
TKI's are a life saver - but they may also have unforseen negative consequences over the long term with continual use (mostly true for the later TKI's than for Gleevec). I do look forward to being able to put the life saver back on the wall and not have to use it. It will be good to know that it is there.
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
Posted 27 January 2012 - 02:50 AM
I do hope that everyone watches this video. It is wonderful to hear Dr. Shah lay out, so concisely, where the latest thinking is now, where it is headed, and what the overview regarding CML and longevity is: this is what every CML patient, new and old, needs (from time to time) to hear.
Last Saturday I took the bus up to San Francisco (an hour away) to the free LLS "Emerging Therapies Conference" — it started with a fine free breakfast, a welcome, then there was an informative speaker who addressed many aspects of the legal/medical concerns that affect so many leukemia patients and caregivers (see CancerLegalResourceCenter.org).
At that point the various leukemia groups broke off to their own sessions. Dr. Shah was the speaker for our CML session, and it was well attended. He showed his slides of his latest ASH presentation, then took questions.
For me, I wanted to establish a connection with Dr. Shah to cover my bases in case it is ever necessary for me to restart Sprycel and I am faced with the return of that immense fatigue: I asked if, after one has had a swift and successful response to a TKI, been PCRU for two years, and been approved to, under supervision but not in a trial, stop taking one's TKI, and one had continued testing PCRU, yet IF it should happen that one day it is decided that, based on the trend of the testing results, it would be good that one's TKI is restarted: what was his opinion regarding reducing the approved dosage once PCRU had been reestablished, in order to reduce side effects in the long term, as often the thinking is still that one should never be taking a less than standard dosage of the preferred TKI, yet we know that reduced dosage was being studied as a sideline, rather than mainstream treatment, for cases that warranted it.
Dr. Shah acknowledged that once one's condition is restabilized and there is no longer any variance from PCRU, that if side effects are still a strong quality-of-life issue, then reducing the dosage just to the level that there is acceptable improvement in quality of life without loss of PCRU testing — this thinking was being accepted more often, and the results are watched and those results are the indication of whether to stay at that dosage or to increase it again.
I then asked whether any research was being done on those patients who had experienced fast and deep responses to their TKI, whether there was anything that could be learned by studying the wellness factor of these patients rather than only the disease response of everyone, and then applying what is learned to everyone to see if there is any benefit found. He laughed and said that might be more the focus in two or three years. I suggested that wasn't that what graduate students were for? LOL
Ah, God bless Dr. Shah and all the researchers and treaters of these disorders!
Be alert, but not overly concerned.
• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week
• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)
• Oct. 28, 2008: CML confirmed, start Gleevec 400mg
• Oct. 31, 2008: sent home when WBC reached 121k
• On/off, reduced dose Gleevec for 7 months
• April 2009: Started Sprycel 100mg
• Sept. 2009: PCRU 0.000
• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)
• Currently: still steady PCRU, testing every 6 months 🤗
— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!
Posted 27 January 2012 - 01:49 PM
This is very encouraging that the medical community is getting more confident about attempting therapy discontinuation. I will remain hopeful as it will be my turn next month to try this, having been PCRU for almost five years without so much as a blip. I will keep a thread going when that happens.
Posted 30 January 2012 - 07:14 PM
Wishing you the best of luck with your discontinuation.
Posted 31 January 2012 - 04:58 AM
This video is great, I really believe many of us will be able to stop or reduce a lot their TKI dosage, even if the ultimate "CMR" goal is not reached.
I have my 5 months test in exactly one week, having my fingers crossed
Good luck everyone !
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