112 replies to this topic

[scuba]

I came across this article regarding Sprycel vs. Gleevec results and noted with interest the comments from Dr. Shah at the end:

 

http://www.onclive.c...aining-Response

 

"Once a patient achieves a deep response, the dose can be aggressively reduced, Neil Pravin Shah, MD, states. Additionally, brief drug interruptions can be utilized if side effects are troubling."

 

This has been my experience.

 

(Also - I am currently taking no Sprycel whatsoever (zero mg.) until my next PCR scheduled on March 10th to see if I can maintain PCR < 0.01% without Sprycel.)

[pammartin]

Best of luck Scuba, last I read you were taking every other day, so you have stopped completely? Is the bottle still mocking you for not taking? I had to put mine away and out of site.
Positive thoughts
Pam

[scuba]

Best of luck Scuba, last I read you were taking every other day, so you have stopped completely? Is the bottle still mocking you for not taking? I had to put mine away and out of site.
Positive thoughts
Pam

 

Hi Pam,

 

I did every other day for a few days and then just stopped. I'm too curious to see what a month of no Sprycel does to my PCR level. 

Like I mentioned, I half expect a jump in PCR (one log at most) in which case I will resume my Sprycel at double dose (40mg.) then drop to my normal 20mg dose after 30 days - and leave it that way. I am very confident that if I have to resume, my PCR will drop back again to very low or undetected.

 

On the other hand - if my PCR remains undetected or barely detectable, I'll go another month without Sprycel and test again. If I can go six months with PCR not changing (i.e. < 0.01%), I will revert to 3 month PCR testing with no Sprycel. And if I can go one year that way with no increase - I will go to once per year testing and consider this thing licked. It's a long shot.

 

Now that I have been off Sprycel for a bit, I don't feel any different yet. I won't know until I get back to running hard (too cold right now).

[scuba]

Wow, this gives me somewhat of a light at the end of the tunnel, If I can just get there and reduce the dosage, perhaps I can get back some of my quality of life.

 

Dose reduction is definitely a protocol worth pursuing. It seems that once the bulk of the cancer is knocked down, maintenance of the residual does not require full dose.

 

For those who have reservations about stopping therapy to "test" remission - dose reduction step by step followed by testing is certainly valid. On this Forum, for example, Trey has cut his dose of Gleevec and remains PCRU (for years I recall). In my case, I cut my Sprycel dose from 70mg to 20mg. and continued to see PCR fall. I increased my dose from 20 to 40mg to see if I could accelerate the drop and there was no change; the PCR just continued to fall to below detection. I resumed 20 mg. and now have stopped completely to test durability using vitamin D3/K2 and Curcumin alone.

 

For many of us who have deep response - full dose is probably not needed to keep the response.

[Trey]

I am glad to see Dr Shah say TKI drugs should be reduced to a maintenance dosage after "deep response".  I would suggest a prolonged deep response (year or two) to keep driving the barely PCRU into deeply PCRU.  Dr Shah guided the initial Sprycel clinical trials, so he is one of the true experts on the subject. 

[Melanie]

Congratulations Scuba on your journey. Was wondering if you're doing this on your own or if Dr Cortes is in agreement with you?

[scuba]

Congratulations Scuba on your journey. Was wondering if you're doing this on your own or if Dr Cortes is in agreement with you?

 

Dr. Cortes is "o.k." with my decision. He counseled against it, but agreed to modify my plan to be tested monthly. He can't reasonably be in "agreement" with me as my plan is not in the protocol (which he helped write), but he is curious.

 

He knows that if a PCRU patient (or one who is very low: PCR < 0.01%) stops their drug and then becomes positive again, there have been no cases where response is lost once they resume. In all cases, patients resume their "undetected" or baseline status after re-start.

 

So the risk to me is very small - like zero. In 30 days, I will know.

 

I have been off Sprycel now for over a week. I do not feel any different - yet. I'll know when I start running hard and have a CBC.  I test on March 10th and on that day I will resume 20mg Sprycel in anticipation that my test will show PCR increase (takes a few days for the result to come back). If it does show an increase, I will double my dose to 40mg for 30 days and then drop back to 20 mg. I expect my PCR will fall back. And I will have my answer. I probably won't try this again for at least several years if this does not work.

 

But if my PCR does not increase. Then my body is on to something (probably because of big change in my nutrition approach). And I look forward to reporting my results here. I suspect Dr. Cortes will get very interested at that point as well. 

[Gail's]

Being new to this disease, I'm definitely afraid of it. When I read of reduction then resumption of our meds, I get very nervous that mutations are more likely to occur. For example, if antibiotics are started then stopped before cure of an infection, the bacteria can mutate to become drug resistant. I'm sure it's not as simple as that example. Right now I'm so in the thick of the gleevec side effect vs disease condition query that it's hard for me to imagine stopping the med to figure it out. I know how I'm feeling right now is not a way of life I'm happy to adopt, but it's the deck I've been dealt, so trying to remind myself that life is more important to me than these side effects. I guess it's because I am encouraged by the other members here that it will get better with patience.

On a happy note, I'm thrilled to report that my CBC report shows WBC at 6000! Hooray!

[rcase13]

Yeah mutations scare me. Everything I read indicates we don't have a firm grasp on what causes them.

But I have always been a chicken shit. If everyone was like me we would never get any where.

[Pin]

I'm super interested in this topic, but I can't help but feel that I'm not quite going to get to the point where I can even try this.

 

I've been MR4 (<0.01) for 17 months straight now (since June 2013), I hit this level at 9 months into treatment (March 2012), then at the 15 month mark (Oct 2012), I had a little blip where I went up to at its highest 0.041, and hung around this level for about 7 months then it dropped back down again and has been that way ever since.

 

My latest test has showed a level of 0.013. Currently, I'm not really too concerned. After all, I've been here before, so hopefully it will go back down again at the next test.

 

What I'm wondering is...why?

 

Am I just one of those people who is super sensitive to change? Can't quite hold onto the drug levels? I did have a levels test done and I was way under the threshold for Gleeve drug levels. I have been unwell again for the last four months with nerve problems in my neck and shoulders, and my stomach has not recovered yet from 2 gastro illness I had back in Oct/Nov last year - so my guess is, that maybe it's this. This is what was happening last time I had a breakthrough.

 

Does the clock to stopping time start again once you break that magical barrier? How do I get to deeply PCRU, like you are saying Trey? Will it just take me a lot longer? I'm obviously just hanging on to my levels at the moment.

 

So many questions...

[gerry]

PIn,

They are running trials in the UK for people who are MMR and have stopped. I haven't seen any information come out yet for these trials.

Has your doctor talked to you about switching to Tasigna, perhas Gleevec isn't the right match for you.

[Tedsey]

Pin,
I understand what you say. I have been on Sprycel 100mg for 5 years. It took a long time to have a MMR. In about the last 2 years my PCR came back 0 twice. My latest came back at .002, but I cannot seem to sustain PCRU. Because I cannot, my hem/onc will not allow me to lower dose. For the first time, I am feeling what I think are side effects. I have daily headaches, sometimes tightness in my chest and wheezing. I feel I need to cough to breathe. However, I have none of the typical PE symptoms. I don't gasp of air while working out and breathing is actually easier prone. However, oddly, I have been sustaining muscle injuries easily that don't seem to heal completely. So how does one get PCRU deeply? Luck probably or better cells for the drug. Some of us process the drug better than others I guess.

I tried curcumin with bio perin at 8mg daily. However, it was so hard to take so many pills. After a couple years I just couldn't any more. I now take 2-4 a day. It doesn't seem to effect my PCR levels (at 8mg for a couple years and now at a lower dose). I continue to use it as it is said to be good for your heart and other things. I never had issues with bruising. In the past, I had bleeding issues. I took the curcumin after and didn't have any problems. My blood counts still remain low with or without (I even stopped taking curcumin for a while). It appears my issues have been mostly drug related. And I have always thought my dose has been too high (100mg dasatinib). But I have been told to and have soldiered on. I take my pill (unless I barf it up due to stomache flu or the like) and do not skip doses. I still cannot sustain a CMR (PCRU) despite everything I have tried. I just seem to go up and down like yoyo on a full dose. However, I pretty much sustain a MMR.

I am concerned what this dose is doing to my body and wonder if I really need 100mg. And I am afraid of the new issues that have popped up. My onc sometimes hears the wheezing, but says I'm fine. It comes and goes. But lately, this tightness and headaches have been very uncomfortable. I feel deprived of oxygen. I should prob. demand a chest X-ray. And then again, it might not be drug related at all. But I never know because I am never off.

I am due for a regular check up, but I am scared to go and learn of any more surprising bad health news that I didn't bring on myself (like CML). I feel if I were to get another horrible disease or cancer, for that matter, I'd rather not know. The mental anguish with CML was enough to almost kill me. I could never take that again plus chemo or any other drug therapy with side effects. Knowing has always been my undoing.

[Marnie]

Hey, Tedsey. . .sorry that you've been having such a rough time of it.  It's nice to hear from you again.

 

I'm having some similar issues with Sprycel, though to a lesser degree.  I'm currently taking 50 mg, after two pleural effusions.  I was off TKIs for about a month and have lost PCRU and MMR and can't seem to regain it, which is a frustration.  Lately, I have the chest tightness and wheeziness that you talk about.  I had a chest x-ray about a month back and it showed nothing.  My onc can't hear anything when I breathe, though my PCP heard the wheeziness.

 

Like you, I'm just not sure what to do about it.  I had a full battery of lung tests and they saw nothing.  I had an echocardiogram and they saw nothing.  I'm left wondering what is going on or if it's all in my head. 

 

I go in for bloodwork today (ugh. . .the roads and traffic are going to be awful with the snow that was just dumped on us!).  It will be interesting to see if my PCR has dropped at all. 

 

Anyway. . .I think I understand a bit what you're feeling.  It's so interesting to see the huge range of responses that people have.  For some, getting to a deep response and keeping it is so easy.  For others, not so much. 

 

Good luck and stay in touch.  We've missed you here.

Marnie

[scuba]

Pin,
I understand what you say. I have been on Sprycel 100mg for 5 years. It took a long time to have a MMR. In about the last 2 years my PCR came back 0 twice. My latest came back at .002, but I cannot seem to sustain PCRU. Because I cannot, my hem/onc will not allow me to lower dose. For the first time, I am feeling what I think are side effects. I have daily headaches, sometimes tightness in my chest and wheezing. I feel I need to cough to breathe. However, I have none of the typical PE symptoms. I don't gasp of air while working out and breathing is actually easier prone. However, oddly, I have been sustaining muscle injuries easily that don't seem to heal completely. So how does one get PCRU deeply? Luck probably or better cells for the drug. Some of us process the drug better than others I guess.

I tried curcumin with bio perin at 8mg daily. However, it was so hard to take so many pills. After a couple years I just couldn't any more. I now take 2-4 a day. It doesn't seem to effect my PCR levels (at 8mg for a couple years and now at a lower dose). I continue to use it as it is said to be good for your heart and other things. I never had issues with bruising. In the past, I had bleeding issues. I took the curcumin after and didn't have any problems. My blood counts still remain low with or without (I even stopped taking curcumin for a while). It appears my issues have been mostly drug related. And I have always thought my dose has been too high (100mg dasatinib). But I have been told to and have soldiered on. I take my pill (unless I barf it up due to stomache flu or the like) and do not skip doses. I still cannot sustain a CMR (PCRU) despite everything I have tried. I just seem to go up and down like yoyo on a full dose. However, I pretty much sustain a MMR.

I am concerned what this dose is doing to my body and wonder if I really need 100mg. And I am afraid of the new issues that have popped up. My onc sometimes hears the wheezing, but says I'm fine. It comes and goes. But lately, this tightness and headaches have been very uncomfortable. I feel deprived of oxygen. I should prob. demand a chest X-ray. And then again, it might not be drug related at all. But I never know because I am never off.

I am due for a regular check up, but I am scared to go and learn of any more surprising bad health news that I didn't bring on myself (like CML). I feel if I were to get another horrible disease or cancer, for that matter, I'd rather not know. The mental anguish with CML was enough to almost kill me. I could never take that again plus chemo or any other drug therapy with side effects. Knowing has always been my undoing.

 

Hi Tedsey,

 

You are close to PCRU and have a deep response now. You might consider cutting your dose in half to 50mg and then test again in six weeks time. If your PCR status is little changed, cut your dose again to 20mg. If your PCR stays the same (within 1/2 log), you might have found a dose that works for you. Your oncologist should work with you on this. As my post above pointed out (Dr. Shaw), research is showing that lower dose is effective and can be a good treatment plan. It certainly has worked for me.

 

Doctors who refuse to lower dose when patients are at MMR are ignorant. It's up to us to edify them.

 

All the best,

 

(p.s. I know I'm pushing it by stopping my 20mg Sprycel, but I am too curious to see if my body can maintain PCRU or very low residual level without any drug. There's also a new Curcumin on the market I am going to try that claims 277 times more bioavailability - like you, I hate taking so many Curcumin pills - but the arthritis and probable CML benefit has been amazing)

[Trey]

Pin,

 

Some day I will write a post on the variables related to drug response.  That day is not today.

 

But I will use TREY'S PROPRIETARY PCR PREDICTOR ALGORITHM to provide some input.

Edited by Trey, 23 February 2015 - 01:46 PM.

[Trey]

Pin,

TREY'S PROPRIETARY PCR PREDICTOR ALGORITHM (aka Trey's  "big dipper" model) predicts PCRU for you within a year.

http://community.lls...per#entry147055

 

You should be seeing the Cigar Galaxy passing on your left side any day now.

 

 BigDipper.jpg   32.76KB   3 downloads

Edited by Trey, 23 February 2015 - 01:49 PM.

[Antilogical]

Geez - I don't remember any of this from my high school science classes.  Except the Owl Nebula.  I'm pretty sure I remember that.

[Trey]

The Owl Nebula is within the Big Dipper (Bear) constellation.  Owl was formed by a dwarf white star.  I think you can see it as the bear's....... "thingy".....underneath the Bear.  That is not part of TREY'S PROPRIETARY PCR PREDICTOR ALGORITHM (aka Trey's  "big dipper" model), but thank you for bringing this to the attention of the entire group for their edification.

 

Somehow this reminds me of the "moose and plastic buffalo incident"....Hmmmmmm.....

Edited by Trey, 23 February 2015 - 09:03 PM.

[Billie Murawski]

Isn't there an Ursa Minor, could there be two little minors next to the big minor? Damn I gotta find out what an algorithm thingy is and what it has to do with Treys big dipper, the good news is I found the owl (wonder what happened to the mole)!

[Billie Murawski]

The Owl Nebula is within the Big Dipper (Bear) constellation.  Owl was formed by a dwarf white star.  I think you can see it as the bear's....... "thingy".....underneath the Bear.  That is not part of TREY'S PROPRIETARY PCR PREDICTOR ALGORITHM (aka Trey's  "big dipper" model), but thank you for bringing this to the attention of the entire group for their edification.

 

Somehow this reminds me of the "moose and plastic buffalo incident"....Hmmmmmm.....

I still can't find the thingy.