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Hello All - New Member

Hello All,

Just wanted to introduce myself as a new member, but I've been lurking on the forums for about 18 months.

I was diagnosed with Ph+ CML with P210 mutation on Mother's Day 5/14/2017 and was started on Dasatinib (Sprycel 100mg) daily beginning on 5/31/2017.

This forum has been a huge resource for me over the past 18 months; especially, when it comes to getting my head around the more technical aspects of the disease.  It is really impressive how far the medical community has progressed with the treatment of this disease; most of my immediate family did not even believe me whenever I would tell them about the treatment that could achieve remission within 3-6 months much less the breakthrough in the 50% response rate in the Treatment Free Remission Trials (TFR).

Right now, my past 3 BCR-ABL QPCR tests have been Undetectable and my current doctor has me on track for a Treatment Free Remission Trial (TFR).

This forum has been a huge asset for me and the peace of mind for my immediate family.

Just wanted to thank you all !




Welcome out of the shadows Fred.

Consider lowering your dose first before TFR. I would suggest 20 mg dasatinib and see if you remain undetectable. You can always go back up, but I suspect you will remain undetected (I would bet Quid in Monaco that is the case).

It will condition your system for eventual TFR.

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.



Your doctor is not up to date on dasatinib. Not unusual - most are not.

Recent research suggests 100 mg dasatinib is too high - as a starting dose for most patients. More is not better or more effective when it comes to dasatinib. This is because dasatinib suppresses your normal immune system in addition to attacking the leukemic one by suppressing your natural defense against CML (T-cell activation).

Research is showing as dose goes up, immune response to CML goes down so that at full dose dasatnib - dasatinib is mostly alone in attacking the cancer. At lower dose, you have both dasatinib and your immune system combating the disease. The result is actually a better overall response on lower dose. This is not true for everyone and finding the correct dose which works maximally for you is key.

I was never started at 100 mg dasatinib, but instead was started at 70 mg (my doctor already knew about dasatinib tendency to work better at lower dose). I did not stay at 70 mg and was quickly reduced to 20 mg where I remain today. Once I started at 20 mg, my PCR plummeted to below detection. I have been undetected for over two years while taking 20 mg.

It is possible you may very well have a "better" response on lower dose than at higher dose. Seems counter-intuitive, but the old adage more is not better applies. Dasatnib is a threshold drug, once you have enough causing a response, more does not increase that response. More just increases side effects and hampers your overall immune system.

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.

Alastair - what a great fact based, scientifically cited post with personal experience. The exact reason people with CML can find the best patient-led information here. 

Prof Clark is, I think, retired. I think his post is not being replaced, but it goes to show the measure to the man that he is coming to Leeds to present to CML patients, still. DESTINY has been a very important trial ... many unanswered questions, but that’s all part of the scientific method.


 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?

All this has happened pretty fast for me, I was diagnosed 5/2017 and achieved MMR 4.5 in October 2018 (about 18 months).  My latest test on 7/16/2019 was undetectable.  So I’ve been on the medication for 27 months and there is still quite a way to go for that 5 year MMR 4.5 requirement.

This has definitely been a help for me



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!


Thanks for the response Scuba! 

I wonder if I could have your oncologist consult with mine concerning the dosage adjustments/reductions?

My next scheduled visit with my oncologist is in 6 months at the Georgia Cancer Center Augusta which is a decent window of time.




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.

WOW! This is really is a small world LoL.  I suppose even more for folks with CML!

As a matter of fact whenever I was first diagnosed, my hematologist suggested that I visit Dr. Cortes in Houston Texas if I had any more technical questions about the disease.  I never took up that offer because I had already gotten confirmations of the diagnosis by 3 oncologist and the distance from GA and Texas.  Moreover, between this forum, the website and the NCCN Guidelines I had gathered tons of information on the disease and how to suppress its progression.

I will definitely be reaching out to my hematologist to see if he could consult Dr. Cortes on possibly reducing the dosage to 70 mg for my case.

So far on 100mg I haven't had any radical side effects but I'm more concerned about the subtle side effects possibly smoldering under the surface.  Besides, I think I am starting to notice changes in the texture of my hair and insect bites like ant bites seem to be taking longer to heal than they used too.

Do you know if there have been any confirmed affects on skin and hair with Sprycel?  If so this may provide more impetus to have dosage reduced.



Sprycel is an SRC inhibitor (in addition to other tyrosine kinases). SRC is important in hair growth regulation (and skin).

The lower dose you can use and still get a satisfactory CML response the better. Lower dose = lower side effects such as hair and skin issues.

In fact, zero dose would be best! That is my goal. I like zero.