74 replies to this topic

[Tedsey]

Thank you!  This is one of the best articles I have read in a long time (although not an easy read).  Finally, it appears there is some support for why the Sokol score seems to correlate still.  I always thought of the score as antiquated, like reading the bumps on people's heads long ago to diagnose disease.  I always put my money on what can be viewed behind the scenes in terms of cells, mutations, DNA, etc.  Not much of a believer in "how it looks" from the outside (or "symptoms" for that matter).

 

I always wondered if anyone was comparing PCRs from healthy people (as they stated in this article).  It is not normally mentioned.  Sadly, the article refers to people with cancer, namely CML, as "diseased individuals".  Ugh.  Sounds terrible.  It makes me feel terrible to think that I am a "diseased individual".  Hard to accept that as part of who I am or how the world sees me. 

 

It is very comforting to see that this article was not supported by a drug company.  I am grateful for the therapies companies have developed.  But I cannot help but question if drug companies prefer to support research that focuses on keeping patients on drug therapies for life instead of developing a drug or therapy that actually cures (like in a "diseased" person stopping any kind of therapy forever because they are no longer "diseased").  I am highly skeptical of the immunotherapy that keeps patients tied to treatments for life.  But I guess if survivability is very significantly higher (I don't go for a smidge, like in a few months or a couple miserable years), then it sure beats a SCT if it totally replaces the potential cure that a SCT can bring.  I also think of a SCT as antiquated, but it is still the only option today for CML patients with disease progression.  I pray with all of my might that this procedure will become a thing of the past in my lifetime because there will be better, survivable, and greatly more liveable treatments available (and not only for CMLers).

 

It appears a lot of good stuff is coming out of Italy regarding CML.  Bless the docs who still want to cure and not desire to covertly profit from the suffering of others. 

 

Perhaps what these researchers observed is small (no pun intended), but it may be one step closer to finding a cure in our lifetime.

[scuba]

Myeloid Derived Suppressor Cells in Chronic Myeloid Leukemia Abstract

The suppression of the immune system creates a permissive environment for development and progression of cancer. One population of immunosuppressive cells that have become the focus of intense study is myeloid derived suppressor cells (MDSCs), immature myeloid cells able to induce immune-escape, angiogenesis, and tumor progression.

http://www.ncbi.nlm....les/PMC4432672/

 

 

I have long believed CML is a failure of our immune system and that the CML cells themselves contribute the very proteins (cytokines) necessary to "suppress" T-cells from doing their job. I am testing whether my immune system failure is an inherited genetic one (i.e. we are pre-disposed to CML expansion and there is nothing I can do to manage it personally and have to rely on big Pharma) or an environmental one (not enough vitamin D or other nutrients so my immune system was kept in the garage).

 

This paper summarizes very well why I also believe that one or a million CML cells does not cancer make. Cancer cells are produced all of the time and may even expand and contract over time and we don't even know it. An increasing understanding of our immune systems myriad cell types and protein machinery that must be marshalled in the attack of CML (and other cancers) will no doubt go a long way to relegating cancer to history as a fatal disease. In CML, we have come a long way. 

 

From the paper cited by Gerry:

 

"Another study reported that patients who had maintained a stable CMR for at least 2 years with Imatinib therapy stopped therapy, but DNA PCR found CML cells again (76). Therefore, in these patients, the immune system is important in maintaining complete remission. In addition, it has been found that NK are important in controlling the leukemic cell growth; in fact, increased levels of NK cell seem to correlate with the successful Imatinib cessation (77). All these observations, together with the finding of BCR/ABL transcripts in some healthy subjects (78), support the idea that in some patients the immunity could exert an immune surveillance against cancer cells, while an inhibition of this control may lead to a permissive environment for development and progression of leukemia."

 

And this is why I take Curcumin in large enough doses to be "perhaps" effective:

 

http://www.ncbi.nlm....pubmed/20305684

 

It <curcumin> downregulates the very cells and related proteins CML uses to suppress the immune response as well as downregulate (not inhibit) the Treg cells so they don't interfere with the other T-cells that can destroy CML cells. What a dance that happens in our bodies all of the time between expand or don't expand. On the one hand - rapid proliferation of immune cells is absolutely needed to fight infection (or cancer for that matter). But once the infection is gone (or under control/hibernating like some virus'), these same cells have to decrease in number and become more or less dormant so an autoimmune disease doesn't get started (T-cells attack "self" or good cells). Up and down in population T-cells have to be managed. You might say, Cancer is nothing more than proliferation without a check and reverse switch. 

 

Regarding Curcumin - quoting from the article,

 

"Curcumin, however, inhibited the suppressive activity of Treg cells by downregulating the production of TGF-beta and IL-10 in these cells. More importantly, curcumin treatment enhanced the ability of effector T cells to kill cancer cells. Overall, our observations suggest that the unique properties of curcumin may be exploited for successful attenuation of tumor-induced suppression of cell-mediated immune responses."

 

In rebuttal to Trey (from an earlier post) who no doubt will opine on this (hopefully will opine) - having cancer cells in the body occurs naturally. They are produced by the constant bombardment from our environment (chemical carcinogens as well as radiation). Most people have a normal immune system functioning and never know that CML or other cancer cells were produced let alone never expand. Also - for complete edification of my friend Trey - one drop of blood contains over 5,000,000 cells. At the limit of PCR detection - perhaps a million CML cells may remain - which is nothing in terms of the percentage of cells in our blood (1,000,000,000,000 cells of which 2 million red blood cells are made every second). In fact, there is evidence that these remaining CML cells are left over trash (senescence) and are not recognized by the immune system because they are not active. They are not quiescent either. They are done - at the end of being able to divide, but not cleared from the blood. They are the result of a successful destruction of the dividing cells and with a restored immune system don't matter anymore - but they continue to register on the PCR 'meter'. We call this stable MMR.

 

However - there is the LSC. It remains, quiescent. Keeping it quiescent is one strategy, trying to eradicate it even better, but another strategy is that whenever they divide and produce a leukemic initiating cell, the immune system is primed to attack - just like it does when a herpes virus (cold sore or the other kind) re-activates. I think it is important to stress - the creation of an LSC occurs all of the time due to the wrapping nature of these chromosomes right at the breakpoints where bits of one become bits of another.

 

Curcumin is no cure - vitamin D is no cure. Taking selenium or other nutrients are not a cure - but neither is a TKI a cure. But taken together, perhaps "control" is a better term than "cure". Our bodies can and do  "control" disease. Perhaps we never eradicate anything - or if it is eradicated - it can just be 're-started' as a new disease at some future time. But a new incarnation would have a tough time of it if our immune system is primed and ready.

 

I look forward to Trey's response.  

 

p.s. - by the way, Trey - here is an excellent article on how DNA breaks produce translocations. You may already be aware of the article:

 

http://www.ncbi.nlm....les/PMC3152359/

 

++++++++++++++++++++++++++++++++++++++++++++++

 

Disclaimer: CML, like cancer in general, is a serious disease. In Blast phase, CML can be fatal. The continuous taking of a TKI while PCRU is a near guaranteed insurance policy against relapse. Taking a TKI,however, is not without its own risks (both immediate in terms of side effects and long term). I have chosen to take the cessation risk even though I have been breaking the "medical establishment" rules in doing so in order to test the ideas expressed in this thread and my own personal on-going research in other cell biology fields. I do not endorse my approach or recommend it, I merely share it with the forum. I want to live a TKI free life. It's a risk I am willing to take. Others have their own risk profiles. But over time, we will continue to learn more and more about cancer, our immune system and perhaps we will be able to "eradicate" cancer as a "disease" without ever having to eradicate all of the cells in the coming years. This entire immune therapy approach both nutritional and pharmaceutical is exciting indeed. 

Edited by scuba, 10 June 2015 - 12:31 PM.

[Gail's]

Scuba, I can't remember if you know your sokal score at diagnosis? I am following the observation that people with intermediate- to high-risk sokal scores are more often found in the 60% or so of patients who relapse after TKI cessation.

[gerry]

Hi Scuba,

For me I have believed that the amount of stress I was under whilst working full time and caring for my mother impacted my immune system - as in the NK cells and this allowed the CML to rise up. 

 

I watch your progress with interest, though I have not needed to take Curcumin or vitamin D - but then again I do live in the sunshine state.

[scuba]

Scuba, I can't remember if you know your sokal score at diagnosis? I am following the observation that people with intermediate- to high-risk sokal scores are more often found in the 60% or so of patients who relapse after TKI cessation.

 

I don't know my sokal score - it was never determined. My diagnosis was done by a hematologist/oncologist who only had two other CML patients. I was put on Gleevec (400 mg) with the intent of going to 600 mg. because I had a lot of blasts in my blood (borderline accelerated, but still considered Chronic phase). My blood counts tanked and I had to stop. Bone marrow revealed quite a mess in there (all kinds of issues - trisomy this, monosomy that, but the main one was 9;22 translocation). I was put on 300 mg Gleevec after my blood counts came back up (and they shot back up fast, but it was leukemic cells doing the growing). FISH remained at 100%; PCR was 155%

 

During these first weeks, I began researching CML and learning who are the experts in the field. I discovered Dr. Cortes at M.D. Anderson was one and went to see him. He switched me from Gleevec to Sprycel 70mg. That was even worse than the Gleevec. I went into severe myelosuppression, but my FISH also dropped from 100% to 50% - within a week, and I had to stop taking Sprycel. It was at that time I learned about Curcumin and started taking it at the same time I took the Sprycel.

 

And that was my first surprise.

 

For the next 12 weeks I was not allowed to resume Sprycel, but I continued the Curcumin (8 grams per day every day). My FISH stayed the same even dropped from 50% to 40%, and my blood counts barely increased. Blasts greatly reduced. I had a very slow rise in blood counts over the next 12 weeks - similar to what they see in transplant patients (according to Dr. Cortes). There was no rapid expansion like first happened when I stopped Gleevec. My doctor raised his eyebrow when week after week, my CBC came back little changed. I asked him specifically if it could be the result of Curcumin. He told me, "could be... could not be....don't know". But he also had no problem whatsoever with me taking it - so I continued. He felt good that my blasts were unchanged and my counts were coming back slowly. He said, "we stay the course". He did not want me to take "stim" shots as a way to stay on medication.

 

After 12 weeks without TKI - my counts were finally high enough (Neutrophils reached 700 from 100!) that Dr. Cortes started me on 20mg Sprycel - 1/5th the normal dose.  He mentioned that my blasts were low enough that he wasn't concerned yet with 'significant' progression. He had very high confidence in what he was doing and I continued my learning. He did not feel the 20mg would bring me into remission. He was "conditioning" my bone marrow so that myelosuppression would ease over time. He felt my body had to get use to Sprycel and that over time he would increase my drug dose. He felt that my blood system was very much "Leukemic" and we had to "switch" it over from bad to normal. He said this will take time, but decreased blasts was a great sign. 

 

My counts dropped again, but not as low (Neutrophils = 400) and held steady while on 20 mg. I was finally able to stay on the drug continuously. 

 

And then my second surprise.

 

For the next seven months my blood counts rose slowly - never normal, but near normal. My neutrophils climbed to around 1200 (low normal is 1700) and out of any danger zone, but my FISH went to zero. PCR went to 1.0%. And my bone marrow aspiration revealed no "dysplasia" - things were looking good. He said I reached CCyR in 7 months. I asked about the beginning and said that didn't count. He considers rate of response tied to continuous drug use. I learned a lot from him. I asked him if I can now increase dose to get a deeper response - he said, "NO". We stay the course on 20mg. He said that is my correct dose to get great response and no side effects (that I could feel). He told why rock the boat - it's working. And I remained on 20mg. from then on.

 

During the next many months, my PCR slowly dropped from 1.0% to 0.1% - officially MMR. And more or less stayed this way for some time, 0.1 ... 0.07 ... 0.06 , etc. And then my PCR reached 0.01% and stayed in that zone. My blood counts never returned to normal, but were fine according to Dr. Cortes - my new normal as we are all fond of saying. I still had blasts in my bone marrow.

 

I didn't like that my blood counts were still not normal.

 

In May 2013, I had a physical done by my primary physician and learned that my vitamin D = 17 ng/ml. (wow). He told me about the importance of vitamin D and that I needed to get that level up. So I read up on vitamin D - and learned much about its role in the immune system as well as bone health. Hmmmm. Over the next year, I increased my vitamin D from 17 to where it is now (around 70 ng/ml).

 

And then my third surprise.

 

Over the same time period that I was increasing my vitamin D, my PCR dropped from 0.03% or so to less than 0.01% and then went undetected. More importantly to me, at my next bone marrow (I have to take them annually), my blasts went to zero. No more blasts at all. Is it the vitamin D improving my immune system? who knows. But I needed to get my vitamin D level up anyway. 

 

I remained PCRU for two 3 month cycles and then I told Dr. Cortes I wanted to stop sprycel and test durability. He told me "no" - don't stop - you're doing great. I told him, I feel anemic (RBC = 3.4) when I exercise. He told me, "no" - don't stop.

 

This past February, when I was one month away from my 3 month PCR check, I decided to stop for one month and see what happens (the beginning of my personal Cessation trial). I did it on my own out of curiosity. In March of this year, my PCR came back unchanged ("undetected") and I told Dr. Cortes what I did. He said - o.k. - do you want to go another month, and I said, "yep". And that began my monthly testing which I am doing now. I remain PCRU. Next test next week. If I pass this next test, I go to two month PCR testing. If I fail this next test (i.e. PCR becomes detected and jumps up), I go back on 20mg Sprycel.

 

I don't know my sokal score. In my case I don't think it much matters anymore. 

[Jamie2015]

I don't know my sokal score - it was never determined. My diagnosis was done by a hematologist/oncologist who only had two other CML patients. I was put on Gleevec (400 mg) with the intent of going to 600 mg. because I had a lot of blasts in my blood (borderline accelerated, but still considered Chronic phase). My blood counts tanked and I had to stop. Bone marrow revealed quite a mess in there (all kinds of issues - trisomy this, monosomy that, but the main one was 9;22 translocation). I was put on 300 mg Gleevec after my blood counts came back up (and they shot back up fast, but it was leukemic cells doing the growing). FISH remained at 100%; PCR was 155%

 

During these first weeks, I began researching CML and learning who are the experts in the field. I discovered Dr. Cortes at M.D. Anderson was one and went to see him. He switched me from Gleevec to Sprycel 70mg. That was even worse than the Gleevec. I went into severe myelosuppression, but my FISH also dropped from 100% to 50% - within a week, and I had to stop taking Sprycel. It was at that time I learned about Curcumin and started taking it at the same time I took the Sprycel.

 

And that was my first surprise.

 

For the next 12 weeks I was not allowed to resume Sprycel, but I continued the Curcumin (8 grams per day every day). My FISH stayed the same even dropped from 50% to 40%, and my blood counts barely increased. Blasts greatly reduced. I had a very slow rise in blood counts over the next 12 weeks - similar to what they see in transplant patients (according to Dr. Cortes). There was no rapid expansion like first happened when I stopped Gleevec. My doctor raised his eyebrow when week after week, my CBC came back little changed. I asked him specifically if it could be the result of Curcumin. He told me, "could be... could not be....don't know". But he also had no problem whatsoever with me taking it - so I continued. He felt good that my blasts were unchanged and my counts were coming back slowly. He said, "we stay the course". He did not want me to take "stim" shots as a way to stay on medication.

 

After 12 weeks without TKI - my counts were finally high enough (Neutrophils reached 700 from 100!) that Dr. Cortes started me on 20mg Sprycel - 1/5th the normal dose.  He mentioned that my blasts were low enough that he wasn't concerned yet with 'significant' progression. He had very high confidence in what he was doing and I continued my learning. He did not feel the 20mg would bring me into remission. He was "conditioning" my bone marrow so that myelosuppression would ease over time. He felt my body had to get use to Sprycel and that over time he would increase my drug dose. He felt that my blood system was very much "Leukemic" and we had to "switch" it over from bad to normal. He said this will take time, but decreased blasts was a great sign. 

 

My counts dropped again, but not as low (Neutrophils = 400) and held steady while on 20 mg. I was finally able to stay on the drug continuously. 

 

And then my second surprise.

 

For the next seven months my blood counts rose slowly - never normal, but near normal. My neutrophils climbed to around 1200 (low normal is 1700) and out of any danger zone, but my FISH went to zero. PCR went to 1.0%. And my bone marrow aspiration revealed no "dysplasia" - things were looking good. He said I reached CCyR in 7 months. I asked about the beginning and said that didn't count. He considers rate of response tied to continuous drug use. I learned a lot from him. I asked him if I can now increase dose to get a deeper response - he said, "NO". We stay the course on 20mg. He said that is my correct dose to get great response and no side effects (that I could feel). He told why rock the boat - it's working. And I remained on 20mg. from then on.

 

During the next many months, my PCR slowly dropped from 1.0% to 0.1% - officially MMR. And more or less stayed this way for some time, 0.1 ... 0.07 ... 0.06 , etc. And then my PCR reached 0.01% and stayed in that zone. My blood counts never returned to normal, but were fine according to Dr. Cortes - my new normal as we are all fond of saying. I still had blasts in my bone marrow.

 

I didn't like that my blood counts were still not normal.

 

In May 2013, I had a physical done by my primary physician and learned that my vitamin D = 17 ng/ml. (wow). He told me about the importance of vitamin D and that I needed to get that level up. So I read up on vitamin D - and learned much about its role in the immune system as well as bone health. Hmmmm. Over the next year, I increased my vitamin D from 17 to where it is now (around 70 ng/ml).

 

And then my third surprise.

 

Over the same time period that I was increasing my vitamin D, my PCR dropped from 0.03% or so to less than 0.01% and then went undetected. More importantly to me, at my next bone marrow (I have to take them annually), my blasts went to zero. No more blasts at all. Is it the vitamin D improving my immune system? who knows. But I needed to get my vitamin D level up anyway. 

 

I remained PCRU for two 3 month cycles and then I told Dr. Cortes I wanted to stop sprycel and test durability. He told me "no" - don't stop - you're doing great. I told him, I feel anemic (RBC = 3.4) when I exercise. He told me, "no" - don't stop.

 

This past February, when I was one month away from my 3 month PCR check, I decided to stop for one month and see what happens (the beginning of my personal Cessation trial). I did it on my own out of curiosity. In March of this year, my PCR came back unchanged ("undetected") and I told Dr. Cortes what I did. He said - o.k. - do you want to go another month, and I said, "yep". And that began my monthly testing which I am doing now. I remain PCRU. Next test next week. If I pass this next test, I go to two month PCR testing. If I fail this next test (i.e. PCR becomes detected and jumps up), I go back on 20mg Sprycel.

 

I don't know my sokal score. In my case I don't think it much matters anymore. 

 

Scuba,

I would like to begin taking the Curcumin as well.  But I have SOOOO many questions.

1) Where can I get it?

2) What kind?

3) How much?

 

I am so clueless when it comes to all of these numbers.  I have been trying to do my research but all the numbers seem to turn into a HUGE jumble after awhile.

 

I went to see Dr. Cortes for the first time 2 weeks ago.  I asked him if I could start taking Curcumin and he said if I wanted to..but that they had no research of the effects.  He didn't seem to gung ho about it.

 

What are some good questions for me to be asking? What are key words and test I should be looking for/doing this early on? I am on the 100 MG sprycel.  I was put on the 100mg every 3rd day by another DR. because my Platelets continued to drop with the 100mg every day.  After being on the Sprycel 100MG every day again my platelets have begun to drop.  They are now at 90 and he would like me to do weekly lab draws to watch and make sure they do not get TO LOW.  

[scuba]

Scuba,

I would like to begin taking the Curcumin as well.  But I have SOOOO many questions.

1) Where can I get it?

2) What kind?

3) How much?

 

I am so clueless when it comes to all of these numbers.  I have been trying to do my research but all the numbers seem to turn into a HUGE jumble after awhile.

 

I went to see Dr. Cortes for the first time 2 weeks ago.  I asked him if I could start taking Curcumin and he said if I wanted to..but that they had no research of the effects.  He didn't seem to gung ho about it.

 

What are some good questions for me to be asking? What are key words and test I should be looking for/doing this early on? I am on the 100 MG sprycel.  I was put on the 100mg every 3rd day by another DR. because my Platelets continued to drop with the 100mg every day.  After being on the Sprycel 100MG every day again my platelets have begun to drop.  They are now at 90 and he would like me to do weekly lab draws to watch and make sure they do not get TO LOW.  

 

Weekly CBC lab draws are a must when your counts are getting too low. In your case it's platelets, in my case it was neutrophils.

Keep in mind that Curcumin is a mild blood thinner - in the same way Aspirin is a blood thinner. As long as you do not experience Petechia, bleeding gums or obvious bruising, your platelets are working. Petechia may be a sign of too low platelets.

 

I never took Curcumin on full dose Sprycel. What did Dr. Cortes recommend regarding your dose and low platelet count? What is your current CML state (FISH? PCR?). 

[Trey]

Sprycel cessation study results to date (after 2.3 years of study) conclude:

 

"we failed to improve TFR* as compared to previous studies with imatinib first or second line or second generation TKIs second line."

 

"At 12 months, the proportion of patients in TFR was 41%"

 

"duration of therapy is probably the most important parameter to consider before making the decision to discontinue tyrosine kinase inhibitors."

 

http://learningcente...ne.in.html?f=m3

 

* TFR = treatment free remission (i.e., no TKI drug)

 

I would have anticipated better cessation results from Sprycel than Gleevec, but this study shows only 41% successfully stopped Sprycel.  And the pool of participants were fast responders.  This study and other information (so far) has shown there is no difference between Gleevec and Sprycel when it comes to cessation success.

[scuba]

Sprycel cessation study results to date (after 2.3 years of study) conclude:

 

"we failed to improve TFR* as compared to previous studies with imatinib first or second line or second generation TKIs second line."

 

"At 12 months, the proportion of patients in TFR was 41%"

 

"duration of therapy is probably the most important parameter to consider before making the decision to discontinue tyrosine kinase inhibitors."

 

http://learningcente...ne.in.html?f=m3

 

* TFR = treatment free remission (i.e., no TKI drug)

 

I would have anticipated better cessation results from Sprycel than Gleevec, but this study shows only 41% successfully stopped Sprycel.  And the pool of participants were fast responders.  This study and other information (so far) has shown there is no difference between Gleevec and Sprycel when it comes to cessation success.

 

Also noted in the same study:

 

"We reported that dasatinib dose individualization was associated with a lower risk of pleural effusion and produced high levels of deep molecular responses (Rousselot et al. EHA2014)".

 

This is M.D. Anderson's approach to customize dose and response. Sprycel is a threshold drug. Pleural effusion and heart issues are a big problem. Lower dose does seem to mitigate these issues. Maintaining patients at full 100mg Sprycel dose while these patients are in PCRU AND are having lung/heart issues (PE) and other side effects is not wise. Finding the correct dose that works for a patient should be a priority - not one size fits all.

 

Regarding stopping Sprycel too soon and not achieving better TFR success than stopping Gleevec, I admit to disappointment. I had hoped it would have been better.

 

I am in my 4th month (PCR test next week) of TKI cessation with no change in PCR (i.e. "undetected") so far. I remain 50-50 that this can succeed especially since I stopped very soon after achieving PCRU and in light of the paper you cited.

 

I'll go back on low dose Sprycel (20mg) and remain on it for several years before trying again if a jump in PCR occurs but I am hopeful that my strict nutritional protocol (Curcumin + Vitamin D) can strengthen my CD4+ and CD8+ T-cell response while forcing Leukemic cells to become senescent. I know you disagree because there are no FDA trials to show proof of efficacy (and likely never will be trials because of cost), but there are also no trials to show lack of efficacy either. And there is plenty of good solid science research done at reputable institutions on the merits of these two nutrients regarding cancer, the immune system and health in general. But without trials to put it together and test it's not definitive. 

 

Assuming I go years without a TKI, I could not claim that it was my nutrition approach that did it - even if I believe it to be so. However, if I do experience a big jump in PCR and have to go back on Sprycel, it would lend support to the idea that nutrition focus alone (of the kind I have been doing) is completely insufficient. The best I could claim is that it helped augment Sprycel's low dose effectiveness so I could get to PCRU on only 20mg Sprycel (which is impressive). That's probably the reason why I haven't been dissuaded from my approach at the clinic.

 

We'll see - more data next week. Thanks for the reference.

[Jamie2015]

My PCR is 0.64

When looking at lab results what would the FISH test look like?

I see stuff that reads '(ABL1x3,BCRx2)(ABL1 con BCRx1) [8/200]
4 interphase a photographed.

My nurse emailed me the results saying my CYTO reported normal, but the FISH report stated still positive 'at a low level'

[Trey]

What you quoted is from a FISH report.  Your FISH result is 8 out of 200 examined, so 4%

[Jamie2015]

Thanks Trey. Still trying to just put pieces together and learn as much as I can about this. So I appreciate Yall answering my 'not so smart' questions lol

[Enid]

I was diagnosed in June 2011 and started taking Tasigna 2 times a day 300mg each dose. I have been in remission since May of 2012. Early this year I decided to reduce my dosage to 300mg once a day. I finally told my doctor thinking he would tell me to get back on the full dose but he was supportive even though he did not agree with my actions. I am still in remission and only taking 300mg a day of Tasigna. Just reporting.

[Dina36]

That is awesome Enid. I was dx August 2011 and been taking Tasigna 600mg, still deductible but low numbers to quantify. I would be so happy to reduce my dosage to at least 450mg.


Dina

[Buzzm1]

still in remission and only taking 300mg a day of Tasigna.

Congrats Enid.  All things considered, the less TKI we put in our body, while remaining undetectable, the less chance we will experience the adverse toxic effects.  Plus, you were at full dosage while undetectable for almost 3 years.

 

If things continue to work out I'll go down to 100mg of Gleevec (25% dosage), from the current 150mg, on Jan. 18, 2016.