56 replies to this topic

[TeddyB]

So, i am seriously considering dose reduction from 400mg Gleevec pr day, to 300mg or 200mg pr day, but i dont know if i should or not.

 

From the Destiny trial it seems i should be fine on 200mg pr day, but i would like to ask for opinions here before i ask my onc.

 

http://www.onclive.c...merging-for-cml

 

"

In those with MR3 at baseline (n = 49), the recurrence rate was 18.4%. The median time to relapse was 4.4 months (range, 3.2-8.1). For those with MR4 at baseline (n = 125), the molecular recurrence rate was just 2.4%, with a median time to relapse of 8.7 months (range, 8.4-10.7).

"

 

"

In the smaller DESTINY trial, 174 patients with chronic phase CML were enrolled. These patients had received a TKI for at least 3 years and were required to have at least MR3. Patients were receiving imatinib (n = 148), nilotinib (n = 16), and dasatinib (n = 10). The median duration of TKI therapy was 7.0 years.

"

 

So what do you think? Is it too soon, or should i start talking about it with my onc already next week when i have my next appointment?

 

BCR-ABL1/ABL1 (IS)
04.11.12     76%
06.14.12     17%
07.26.12     3%
10.24.12     0.10%
01.15.13     0.014%
04.11.13     0.014%
07.16.13     0.032%
09.12.13     0.021%
12.04.13     0.013%
03.05.14     0.017%
06.11.14     0.025%
09.12.14     0.018%
12.11.14     0.031%
03.23.15     0,014%
15.06.15     0,013%
16.09.15     0,01%
16.12.15     0.01%
16.03.16     0.01%

09.06.16     PCRU

12.09.16     0,015

24.01.17     PCRU

 

[Trey]

I view attaining PCRU as the beginning of the final drive toward an ultra low level, even if it cannot be measured.  If the side effects are tolerable, I would wait and put another PCRU on top of the last one.  After that maybe reduce to 300mg.  There is no magic approach.  But if the PCRs are negative, you have quite a few options.  You could even switch to low dose Sprycel. 

[cmljax]

Knowing what we know today from DESTINY and other trials and the experience of others on this site, you could have started the conversation 2 or 3 years ago. At the end of the day, however, it all depends on your oncologist.  Remember there is only downside for him/her if he/she agrees to dose reduction and something bad happens, even though it is highly unlikely that anything bad will happen.  Even those who relapsed in DESTINY regained their previous response level fairly quickly.

 

I reduced dose recently but only because of a rash of skin cancers that occurred right after I started Tasigna.  Even then, my oncologist wanted me to stay on full dose and add Soriatane (another drug with awful side affects) or switch to full dose Sprycell. I had to basically tell him that I wanted to try a 25% dose reduction on Tasigna first because it was working so well on my CML. He will not support further reductions until I have been on therapy for at least 3 years. 

 

So I think you should have the conversation for sure. Another alternative is to switch to low dose Sprycell (no more than 50 mg). There have been some recent studies supporting this as a first line strategy, but since you are at PCRU, you could probably maintain on 20 mg Sprycell.  Switching meds is kind of scary though, so if you are tolerating the Gleevec, maybe a less scary approach is to reduce dose first. All depends on your onc and/or your willingness to reduce on your own and not tell.  I would not do that, but others on this site have.

 

Good luck whatever you decide, but you should at least start the conversation.

[gerry]

I had a year of PCRU before dropping to 300mg Gleevec.

[TeddyB]

I view attaining PCRU as the beginning of the final drive toward an ultra low level, even if it cannot be measured.  If the side effects are tolerable, I would wait and put another PCRU on top of the last one.  After that maybe reduce to 300mg.  There is no magic approach.  But if the PCRs are negative, you have quite a few options.  You could even switch to low dose Sprycel. 

 

 

Knowing what we know today from DESTINY and other trials and the experience of others on this site, you could have started the conversation 2 or 3 years ago. At the end of the day, however, it all depends on your oncologist.  Remember there is only downside for him/her if he/she agrees to dose reduction and something bad happens, even though it is highly unlikely that anything bad will happen.  Even those who relapsed in DESTINY regained their previous response level fairly quickly.

 

I reduced dose recently but only because of a rash of skin cancers that occurred right after I started Tasigna.  Even then, my oncologist wanted me to stay on full dose and add Soriatane (another drug with awful side affects) or switch to full dose Sprycell. I had to basically tell him that I wanted to try a 25% dose reduction on Tasigna first because it was working so well on my CML. He will not support further reductions until I have been on therapy for at least 3 years. 

 

So I think you should have the conversation for sure. Another alternative is to switch to low dose Sprycell (no more than 50 mg). There have been some recent studies supporting this as a first line strategy, but since you are at PCRU, you could probably maintain on 20 mg Sprycell.  Switching meds is kind of scary though, so if you are tolerating the Gleevec, maybe a less scary approach is to reduce dose first. All depends on your onc and/or your willingness to reduce on your own and not tell.  I would not do that, but others on this site have.

 

Good luck whatever you decide, but you should at least start the conversation.

 

 

I had a year of PCRU before dropping to 300mg Gleevec.

 

Thank you all for thoughtful inputs.

The GI side effects are starting to be an issue for me unfortunately.

I am not proud of this but i have on some days (not many, maybe 8 times or so in the last 5 months) taken 200mg or 300mg (usually 300mg, it has only been 2 times where i only took 200mg) to help deal with my nausea and diarrhea.

I will talk to my onc on my next appointment, to see what (if anything) she is comfortable with, and as Trey says, maybe wait for another PCRU result before i start lowering dose on a regular basis.

Staying away from red wine and fatty foods (fried foods especially) seems to help with my GI issues, something that is easy for me to forget in social settings sometimes since i have never had issues with this earlier. I will have to be a bit harder on myself and my wine/food indulgence while trying to figure out if dose reduction is on the table for me.

 

Again thank you, i value your opinions very much.

[chriskuo]

I would consider changing to Sprycel before dose reducing. You are likely to get a better response initially and be more comfortable reducing dosage on Sprycel.

If you get serious PE with Sprycel, there are other options, including going back to Gleevec.

[Pin]

I say bring it up for sure, it's your body, and feeling crap all the time is really difficult to say the least. Attitudes to tailored dosing seem to be changing rapidly, which is good for patients.

I can relate TeddyB we seem to have a pretty similar history, I think I may be around 18mths ahead of you.

After 6 years, I have finally hit the wall with Gleevec, it has done a great job for me, but I desperately need a change, the side effects have just gotten to a point to where I am constantly struggling. I had planned to reduce​, and I am pretty sure I would have been able to, but after a chat with a specialist I have decided to give another drug a go first. Mainly because I need a change, and also because I was told that I may have a better chance of succeeding at cessation if I tried another drug instead of reducing. That proved too tempting for me. I feel as though I have to give cessation my best shot first, and if that doesn't work, perhaps reduce after regaining my response.

It's an individual journey I guess. I am just glad we have options, no cure just yet (maybe) but options, it gives me lots of hope for the future, and I am so glad to have one xx

[gerry]

Teddy - not sure what the rules are in your country, but if you are able to swap to a lower dose of Sprycel that might be the way to go. There seems to be less GI issues on it and an increased chance at cessation.

[campanula]

I agree that this is an educated decision you make with your doctor - and that everyone has a unique set of circumstances.  You can see from my history below that I am fairly new to all of this.  But my doc has suggested trying dose reduction to 300 mg Imatinib as early as November 2017. She is a myeloid leukemia specialist and has given me early updates from conferences of trends in treatment.  She won't go below 300mg Imatinib, but would instead try cessation after two years PCRU.  She has described seeing patients with what would appear to be a "lighter" form of CML than others, and I seem to fall into that category.  If I am able to, I will try dose reduction in November. 

[TeddyB]

I would consider changing to Sprycel before dose reducing. You are likely to get a better response initially and be more comfortable reducing dosage on Sprycel.

If you get serious PE with Sprycel, there are other options, including going back to Gleevec.

 

 

I say bring it up for sure, it's your body, and feeling crap all the time is really difficult to say the least. Attitudes to tailored dosing seem to be changing rapidly, which is good for patients.

I can relate TeddyB we seem to have a pretty similar history, I think I may be around 18mths ahead of you.

After 6 years, I have finally hit the wall with Gleevec, it has done a great job for me, but I desperately need a change, the side effects have just gotten to a point to where I am constantly struggling. I had planned to reduce​, and I am pretty sure I would have been able to, but after a chat with a specialist I have decided to give another drug a go first. Mainly because I need a change, and also because I was told that I may have a better chance of succeeding at cessation if I tried another drug instead of reducing. That proved too tempting for me. I feel as though I have to give cessation my best shot first, and if that doesn't work, perhaps reduce after regaining my response.

It's an individual journey I guess. I am just glad we have options, no cure just yet (maybe) but options, it gives me lots of hope for the future, and I am so glad to have one xx

 

 

Teddy - not sure what the rules are in your country, but if you are able to swap to a lower dose of Sprycel that might be the way to go. There seems to be less GI issues on it and an increased chance at cessation.

 

 

I agree that this is an educated decision you make with your doctor - and that everyone has a unique set of circumstances.  You can see from my history below that I am fairly new to all of this.  But my doc has suggested trying dose reduction to 300 mg Imatinib as early as November 2017. She is a myeloid leukemia specialist and has given me early updates from conferences of trends in treatment.  She won't go below 300mg Imatinib, but would instead try cessation after two years PCRU.  She has described seeing patients with what would appear to be a "lighter" form of CML than others, and I seem to fall into that category.  If I am able to, I will try dose reduction in November. 

 

Thanks again.

 

Had my appointment today, dose reduction was not on the table yet but at least i told her about the Destiny trial and the results of it, but this was not on the table for me as of now.

It seems they are having trials with cessation in Norway, but she said it was to early for me to consider it.

 

Changing to another drug was something she would rather not do because they had some more serious side effects. I told her about the recent study on first line half dose Sprycel and the good results of it, but she seems to want to "wait it out" and only change if my side effects get more serious and non manageable.

 

Most of my CBC tests were good, but B12 and Potassium were a bit low (not by much, probably related to diarrhea i have been having lately) so i was told to take a B12 supplement which she prescribed and eat more potassium rich foods.

 

The only change she asked me to try first, was to take my Glevec evening/dinner instead of breakfast, and if that did not help she recommended a colonoscopy to check for inflammation. She also wanted to have a new blood test done in a month.

 

So, that`s all for now i guess, thanks for listening to all my "crap"

[kat73]

TeddyB - Wow, full let-down.  Know the feeling.  Sounds like your onc and mine were schooled at the same place, Conservative U.  We have to trust them, though, right?  I keep coming across this phrase, "self advocacy" and I must Google it to see if I can glean some insight as to why, when I get knee-to-knee with the onc for my 15 minutes, I never seem to be able to get across how bad I feel.  We laugh and bandy current events around, talk about our kids, and before I know it I'm out on the street with my status neatly quo'd.  No changes.  Just "managed."  I'm pretty sure your onc considers only the following:  First priority is knocking the CML back - check.  Is the GI stuff Grade 3 or 4?  No? Check.  "Symptoms can be managed" - check.  Done.  Next patient, please.

 

The only way I got any attention was to kind of tell a fib and use the magic phrase, "short of breath."  I wasn't really, I just couldn't move without extreme tiredness and I knew something was wrong and I knew it was because of the TKI.  It was completely vindicated - pleural effusion - 2 months off the TKI and I was totally restored to happiness and well-being.  (Had to go back on, of course.  So fun's over.)  So I have learned to squawk and holler:  "I'm not happy!" - I feel like a toddler and an idiot - but it's the only way to get attention from these guys.  They don't want to hear about side effects, they don't believe in side effects, they don't care about side effects, they can do nothing about side effects.  They were trained to whomp the cancer and that's what they can do and what they will do. 

 

Anyway, just ranting and venting here.  I really like my guy and he's light years better than my first.  I guess you'll have to put up with the GI issues until you are just too miserable, and then you'll have to yell and demand a change - reduction or switch.

[cmljax]

Ditto what Kat said.  I just got my latest PCR and it validated the dose reduction that I basically had to tell my onc I was doing 3 months ago.  His first comment that day on March 5th was "dose reduction is not an option. You have only been on the medicine 5 months." I left that day and started taking 450 mg per day instead of 600 and he knew it and has tested me 3 times since that day:  .006%; <.003%; and <.003%.

 

If they let us dose reduce and something terrible happens, they get sued.  If we live miserable lives because of TKI side effects but achieve MMR, they win awards and don't get sued.

 

The landscape is beginning to change though and with a couple more years of data from the DESTINY study and others, the conservative oncs will have the legal cover they need to work with us to find the least amount of TKI that keeps our CML at MMR or better.  I am hopeful, but most importantly, incredibly grateful that TKI's exist. Now that we are beginning to get past the wide-eyed wonder of such effective drugs, the next step is to tailor dose on a patient specific level while we wait for a cure or less toxic TKI's. Some oncs are doing this now, but they are still in the minority (Dr. Cortes at MD Anderson for example).

 

Don't give up the fight Teddy.  Talk about it at every appointment and take armfuls of supporting studies with you.

[gerry]

Might not be a bad idea to go down the path of a colonoscopy. First to make sure it isn't anything else and if it isn't then the gastroenterologist might suggest your Gleevec is contributing to your problem. Your doc would have to listen then. :-)

[TeddyB]

TeddyB - Wow, full let-down.  Know the feeling.  Sounds like your onc and mine were schooled at the same place, Conservative U.  We have to trust them, though, right?  I keep coming across this phrase, "self advocacy" and I must Google it to see if I can glean some insight as to why, when I get knee-to-knee with the onc for my 15 minutes, I never seem to be able to get across how bad I feel.  We laugh and bandy current events around, talk about our kids, and before I know it I'm out on the street with my status neatly quo'd.  No changes.  Just "managed."  I'm pretty sure your onc considers only the following:  First priority is knocking the CML back - check.  Is the GI stuff Grade 3 or 4?  No? Check.  "Symptoms can be managed" - check.  Done.  Next patient, please.

 

The only way I got any attention was to kind of tell a fib and use the magic phrase, "short of breath."  I wasn't really, I just couldn't move without extreme tiredness and I knew something was wrong and I knew it was because of the TKI.  It was completely vindicated - pleural effusion - 2 months off the TKI and I was totally restored to happiness and well-being.  (Had to go back on, of course.  So fun's over.)  So I have learned to squawk and holler:  "I'm not happy!" - I feel like a toddler and an idiot - but it's the only way to get attention from these guys.  They don't want to hear about side effects, they don't believe in side effects, they don't care about side effects, they can do nothing about side effects.  They were trained to whomp the cancer and that's what they can do and what they will do. 

 

Anyway, just ranting and venting here.  I really like my guy and he's light years better than my first.  I guess you'll have to put up with the GI issues until you are just too miserable, and then you'll have to yell and demand a change - reduction or switch.

 

Yes, seems our oncs are a bit reluctant to try new routes. Yes, i can manage the GI issues, probably a long time if they don`t get worse, i just need to plan more and watch what i eat

Seems wine, sour cream, coleslaw, lasagna, salads, onions, spicy and fried foods upset my stomach now.

4-5 months ago i only had to watch out for spicy foods.

 

Ditto what Kat said.  I just got my latest PCR and it validated the dose reduction that I basically had to tell my onc I was doing 3 months ago.  His first comment that day on March 5th was "dose reduction is not an option. You have only been on the medicine 5 months." I left that day and started taking 450 mg per day instead of 600 and he knew it and has tested me 3 times since that day:  .006%; <.003%; and <.003%.

 

If they let us dose reduce and something terrible happens, they get sued.  If we live miserable lives because of TKI side effects but achieve MMR, they win awards and don't get sued.

 

The landscape is beginning to change though and with a couple more years of data from the DESTINY study and others, the conservative oncs will have the legal cover they need to work with us to find the least amount of TKI that keeps our CML at MMR or better.  I am hopeful, but most importantly, incredibly grateful that TKI's exist. Now that we are beginning to get past the wide-eyed wonder of such effective drugs, the next step is to tailor dose on a patient specific level while we wait for a cure or less toxic TKI's. Some oncs are doing this now, but they are still in the minority (Dr. Cortes at MD Anderson for example).

 

Don't give up the fight Teddy.  Talk about it at every appointment and take armfuls of supporting studies with you.

 

Glad to see your reduction worked well for you. I have been thinking the same thought about reducing to maybe 300mg or even 350mg by myself, but i am now splitting my dose, taking 200mg with breakfast and 200mg with dinner. At least it seems to slow down the diarrhea a bit. Maybe i will notice a difference with the nausea in a few weeks, or at least i hope so

 

Might not be a bad idea to go down the path of a colonoscopy. First to make sure it isn't anything else and if it isn't then the gastroenterologist might suggest your Gleevec is contributing to your problem. Your doc would have to listen then. :-)

 

I am not really sure i could handle a colonoscopy right now after 2 surgeries to remove an anal fistula.

Mmy "rear end" is bleeding every day after toilet visits because of the open wound next to my anus (open into my colon/rectum, luckily its getting better now)

 

I would think it might be a good idea to let it heal some more first, also the thought of a "garden hose" up my butt does not sound appealing at all

 

I am putting myself on 1 month of alcohol/snack ban (not even red wine  ) until my next onc appointment, to see if that helps.

 

But you are definitely right, if i do not get better i will probably have to give the "garden hose" a try.

Ugg, just looking at that thing makes me shiver........

 

 

 

[kat73]

Coupla ideas.  When I had diarrhea with Gleevec, my pcp suggested a probiotic and psyllum (sp?) husk (Benefiber, Metamucil wafers, etc.)  The psyllum husk slows down the water going through your intestines or something.  Anyway, definitely worked.

 

Another idea:  Sprycel.  Why not try it?  With your PCR record you could push hard for starting at no higher than 70 mg.

[TeddyB]

Coupla ideas.  When I had diarrhea with Gleevec, my pcp suggested a probiotic and psyllum (sp?) husk (Benefiber, Metamucil wafers, etc.)  The psyllum husk slows down the water going through your intestines or something.  Anyway, definitely worked.

 

Another idea:  Sprycel.  Why not try it?  With your PCR record you could push hard for starting at no higher than 70 mg.

 

Psyllum husk,, i have looked into that and found this, is powder okay?

https://sunkost.no/p...CFQWrGAodMFcAAA

 

Edit: Also found seeds: www.kinsarvik.no...husk-psyllium-froskall-200-gr

 

Started with probiotic 2 days ago 

 

I would like to try sprycel but got a no no from my onc, at least for now, even told her about the new trial having good results with 50mg front line

[Kali]

I began having stomach issues that cause be to lose 10 pounds and loose bowels after almost three years on Sprycel 100 MGM. Onc didn't think it was the medicine since this was a new side effect for me.
I was also had a very small questionable PE.
We reduced my Sprycel to 70 MGM and all these issues are much better. So I believe it was the dose I was on and now reduction has shown improvements.

[scuba]

I began having stomach issues that cause be to lose 10 pounds and loose bowels after almost three years on Sprycel 100 MGM. Onc didn't think it was the medicine since this was a new side effect for me.
I was also had a very small questionable PE.
We reduced my Sprycel to 70 MGM and all these issues are much better. So I believe it was the dose I was on and now reduction has shown improvements.

 

Given your profile (as seen in your signature line) - you are an excellent candidate for dose reduction to 20mg. This should reduce to near zero your chance of getting any PE in the future and still maintain your response. You are at or near PCRU. You do not need 70 mg Sprycel. You don't need 50 mg Sprycel. You may not even need ANY sprycel after a couple of years  - but 20mg is a good maintenance dose.

[Kali]

Scuba,

Your response makes me ecstatic to think I could be a candidate for 20 MGM and maybe no TKI in a couple of years.

My onc is bigger on cessation than reduction, although I have been sharing research updates with him and he has started approving reductions.
He researches anything I ask him to. So I am going to share this news with him.

Thanks for your response!

[Kali]

I should add he has concerns about the cancer overtaking the drug if dose is too low.

I will share the article where Dr. Cortes starts newly diagnosed patients with 50 MGM.