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Looking for resources to aid discussion about lowering dose of sprycel

I was diagnosed 1 year ago with chronic phase cml and I recently reached MMR with a bcr-abl of 0.054. I would like to have a discussion with my doctor about lower my dose of sprycel. She does not seem to want to do this and has stated that the standard of treatment is 100mg per day and that the dose is never lowered as long as it continues to work and I don’t experience any side effects. I am only 31 and i have concerns- I don’t want to develop a heart condition and I also have serious concerns about the medication impacting my fertility. Any suggestions for bringing up the subject with my doctor again? I would like to be more confident the next time - perhaps this will prompt her to take me more seriously.

Any suggestions are greatly appreciated! 

 

https://www.ncbi.nlm.nih.gov/pubmed/29723397

"Early results of lower dose dasatinib (50 mg daily) as frontline therapy for newly diagnosed chronic-phase chronic myeloid leukemia."

Dr. Cortes, co-author of the above paper, is an expert in CML. He writes the guidelines and is now suggesting 100 mg is too  much to start.

I was never started at 100 mg and I was borderline accelerated phase. Now, I only take 20 mg daily and I am "undetected".

Given your excellent response, you should suggest a 50 mg dose. You can always go back up. If your doctor claims CML will become resistant, get a new doctor.

Thank you so much! I’m in the US and I actually have 2 doctors - my main oncologist and a second opinion. I just don’t understand why neither of them are willing to discuss this with me. Both are acting like dose reduction is some big unknown and both have made mention that it could cause progression/mutation of the disease. Any idea why they don’t accept this new research?

I think most oncologists who are clinicians only and not researchers wait until a new practice is approved by an advisory group.  The researchers who spend some time in the clinical setting with patients like us are the ones who make up the advisory groups and are more comfortable with new approaches to treatment.  And it's probably a lot easier for the clinicians to just stick with what they know until they know something new.

Here's a recent piece from Haematologica:

Precision tyrosine kinase inhibitor dosing in chronic myeloid leukemia?

Giuseppe Saglio, Carmen Fava and Robert Peter Gale

Department of Clinical and Biological Sciences of the University of Turin, Mauriziano Hospital, Italy and Haematology Research Center, Division of Experimental Medicine, Department of Medicine, Imperial College London, UK

http://www.haematologica.org/content/104/5/862

"The bottom line is that it is time to re-think our strategy
of using TKIs to treat CML. We suggest testing an individualized,
precision-based approach that considers disease,
patient and therapeutic goal heterogeneities, and
modifying therapy according to the rate, depth, duration
and stability of molecular response while acknowledging
poor correlations with EFS, PFS and survival. Much work
remains to clarify these issues, and this needs to be tested
in randomized trials."

 

Your doctors are 'ignorant'. Low dose does not cause mutations. Low dose may or may not work depending on "you" - the patient. You are unique. Finding the correct dose is what matters.

You have to keep in your mind that your doctors are licensed physicians who are at legal risk if they depart from established protocols. But, they are also expected to keep learning. Eventually, enough doctors will be applying new protocols that by NOT giving you dose modification, they could be guilty of malpractice. It takes time. Your doctors do not want to 'risk' being out of the mainstream of practice. I can appreciate their concerns given our litigious society - but that doesn't mean they are practicing medicine with you front and center. In the back of their mind, liability is a big concern.

Research oncologists, however, have a different motivation. They want to be famous! Discovering "new", being "first", setting the trail, is their motivation. They are the ones who publish papers by the bucket load. They are sought out for their "opinions" and advice. In the clinic, they want to apply what they have learned first before anyone. They tend to be very smart people.. And arrogant. I like researchers. They lead in clinical trials where they learn (even if the trial is a "failure") what may work and not.

And then there is "US" - the patients who live with this disease. We know the most - collectively. We really do. On this forum and elsewhere, we learn from other patients what they have done, seek to do and who their doctors are (both research and those who practice). We have access to the full range of debate, approaches and what has / has not worked for them. We can't "sue" ourselves by trying something and it doesn't work. We have to be our own best advocate and use the professionals as advisors. In some cases we know more than them (like you now know more about dosing than your doctors). To be honest, my doctor is now just a lab tech for me. Take the blood samples, run the tests and give me the results. I'll take it from there. If something strange turns up, I'll seek an expert 'in that area' - who....publishes papers. And if I benefit from this new experience - I'll share it .... on this forum.

You could try pointing your Doctors at Prof Richard Clark's papers on the Destiny Trial in UK, to back up the link to the USA work Scuba & RC have posted. The trial involved cutting standard dose in half for 12 months and if MMR was maintained medication was then stopped, and many achieved TFR. https://www.ncbi.nlm.nih.gov/pubmed/28566209.

I am now nearly 6 months in to trying TFR following the Destiny Trial protocol, under the care of a consultant at the hospital in Chester (whch is in England), despite the fact I now live in Wales. At the patient day in September I talked to Prof Clarke about this, and one of his comments was that NHS in Wales was more likely to wait for guidelines to be agreed and published than in England. The guidelines had not been published when I started (I believe they have now), so if I had not stayed with the consultant at Chester when we moved to Wales, I might not have been supported in following the protocol 18 months ago. It probably also helped that my consultant in Chester did some of his training in Prof Clark's team in Liverpool. The point about doctors who are not specialists/researchers in the condition being conservative and risk averse and therefore slavishly following guidelines is well made

Hope this helps

Brilliant, Scuba! Right on the money! Love this post!!!!