Hello All - New Member

That's interesting to hear because at my last visit with my hematologist/oncologist (7/16/2019) he was not too receptive to the idea of lowering the dosage.  His basis was that he did not want to jeopardize the possibility of an effective Treatment Free Remission by reducing the dosage going into a discontinuation.  I'm presuming the concern would be that the disease could mutate/adapt in the face of a dose reduction thereby nullifying the intent of TFR. 

I believe that he is taking the most conservative path because we attempted to change over from Sprycel to Gleevec (Generic) back in 12/2017 because Imatinib is more well understood in terms of adverse events and health and safety due to it being an older drug with more studies to support it.  Unfortunately, after switching to Gleevec (Generic) my BCR-ABL levels started to creep back up and I was put back on Sprycel.  I feel that if it wasn't for this event he would probably be more receptive to a dosage reduction prior to TFR.

I'll try to talk to my hematologist about this again and see what he thinks.

Thanks,

Fred

Hi Scuba is right about you doc not being up to date on dasatinib, and he/she is may also not be up date on strategies to get to TFR.

The Destiny trial was mainly populated with imatinib patients, with a few nilotinib and dasatinib. Prof Clarke discussed the results at last year's patient day in Birmingham (you can see that talk here), and will update the group at the patient day in Leeds at the end of September this year. The results show that TFR rates were higher where patients at least in MMR, if not MR4, had a 12 month period on reduced dose prior to stopping. This is compared to earlier trials where people stopped from full dose.  Indications are that people who have been in MMR for several years have a better chance. I have discussed this in some detail with my consultant, who previously did some training with Prof Clarke in Liverpool. (I am 9 months post stopping imatinib, after 10 years on 400mg and 1 year on 200mg. ) My consultant said that he wouldn't suggest it to anyone who has not been in MMR or better for around 5 years. 

Prof Clark's Lancet paper on Destiny can be accessed through this link.

Hope this helps.

 Thanks for the informative reply scuba!

Hope you don’t mind me asking if you have a background in medical research because you have been a wealth of knowledge while I’ve been lurking here on the forums.  I picked up on the Vit D supplementation, curcumin, and genistein (soy) being a non specific tyrosine kinase inhibitor from your posts.

Also, are you seeing an oncologist/hematologist or a CML Specialist? 

Btw, how long were you undetectable on 70mg before being switched to 20mg Dasatinib?

Correct me if I am wrong, but hasn’t a link been shown between fasting and bone marrow renewal?

I have scientific training and am involved in medical data (immuno-oncology). I try to demystify some of the language medical professionals use to communicate with each other when posting. My oncologist is a research specialist in leukemia (CML included). I have learned much from him.

I was never undetectable on 70 mg. I could not tolerate 70 mg (severe myelosuppression). I was taken off drug for over 7 months while my blood counts recovered. My CML remained steady during that time off drug (which was an eye opener to my doctor and I attributed to my nutrition protocol which I believe slowed CML. No cure, just an impediment to the disease). When I re-started at 20 mg, my PCR plummeted eventually to "undetected".

I fast often now - at least one day per week and then several days in a row a few times per year. There is growing evidence that fasting leading to ketosis puts the body into autophagy (cell scavenging) which massively clears out old, diseased cells mostly white blood cells. Upon re-feeding, the bone marrow is stimulated to replace lost cells which leads to a rejuvenation of our immune system. In historic times, food was not available from a food store with ice like it is now. Our bodies would routinely (almost every day) go into some level of ketosis overnight when we are naturally fasting during sleep. Having food - mostly carbs - available all day long in excess amounts puts the body into a metabolic "hell" where it never gets to clear our junk easily (it still clears it out, just not very well) or deeply leading to all kinds of disorders. Eating and "not eating" is a normal way to live. Once you get used to it, it's easy. It's doing it the first time that is the toughest. It's easy for me to go without food and not get fatigue, tired or ornery. I still get hungry, but nothing like that first time!

Fred,

How ironic ... my doctor was recently named Director of the Georgia Cancer Center (Jorge Cortes). Look him up. I don't know if he will be taking patients, but worth a try for consultation with your doctor. Although I could continue to see him if I want  - I am at a stage in my care where all I really need is periodic blood tests. My case is no longer "interesting" at the medical level warranting a research oncologist.