63 replies to this topic

[tiredblood]

I'm a recent cessationist, also on the LAST study. My Gleevec habit lasted for 15 years, having been in the original Novartis trial. One of the main reasons I signed up for LAST was just to find out what I would feel like without Gleevec. I had learned to live with whatever the side effects were over the years, to the point that I no longer knew what normal might feel like.

Since fatigue is our topic here, in comparing before stopping to after I stopped in mid Sep, my fatigue is worse. However, other changes could be affecting this sentiment, such as:
- joint pain is significantly worse after stopping
- have felt some lung congestion and had coughing that has persisted for 2 months

My PCR tests have been negative for many years and remain so. My stopping experience thus far has been disappointing though I realize it's still early. All those years on TKI must undoubtedly induce significant changes in the body and the "withdrawal" effects are apparently not understood yet. I'm looking forward to hearing other cessation stories.

I've stopped Tasigna for a different reason.  However, the joint aches and pains are worse than the ones I had when I first started the drug.  Apparently, TKI withdrawal syndrome occurs in some patients.  IIRC, it was observed in the EUROSKI?? trials.

 

Here is what Dr. Cortes said about it, "These symptoms tend to improve over a few weeks to a few months with the use of ibuprofen or similar medications. In some patients the symptoms may persist longer."  I haven't found anything that particularly works.  The pain is worse when lying in bed.  I suspect tendons and/or ligaments are also involved.  I got Cymbalta from the PCP to try and it is kind of early to tell if it is working, but I think it may be alleviating some of the pain.  I'm getting some sleep now, but still toss and turn and hug a heating pad.  

[Alajazz]

Tiredblood: my aching joints are also worse in bed and trying to move after remaining still for awhile. I take Aleve and Advil and trying to get by with that. My onc said something similar to Dr Cortes, that joint pains should subside within a few months. However, she also said that some had it for much longer and at least one person went back on Gleevec due to the pain.

Haven't tried Cymbalta before but have been taking gabapentin for many years primarily due to issues with peripheral neuropathy. Don't know if others have seen this but gabapentin allows me to sleep really well when taken right before bedtime. I've asked several doctors about any adverse effects of taking gabapentin for years and so far all has been positive.

The PN developed when I was on interferon + Ara-c. When I first went to MD Anderson that was the first line treatment for CML before the TKI trials that resulted in Gleevec. Actually, patients had to fail on first line before being allowed to enter the trial.

You mentioned hugging a heating pad. How does that work? Does it cover you like an electric blanket?

[AllTheseYears]

Been off Gleevec for four months now, after taking it nearly 14 years.  Wow. Pain has been debilitating at times, especially in my arms and hands, and has only increased during the Gleevec-free time. Also, digestive problems have worsened.  I had hoped those particular issues would disappear.  I think the years taking Gleevec damaged my body more than I - or my oncologist - imagined.  Fatigue continues, but I can't tell if it affects me more or less.

 

Return mid-January for my first onc visit since beginning cessation.  (I'm not participating in a trial.)  If possible, I plan to remain TKI free.

 

Best to everyone trying to say "Goodbye TKI." I remain optimistic that we might help other CMLers and help ourselves as well.

[Buzzm1]

Congrats on remaining RCRU four months after TKI cessation AllTheseYears.  Sorry to hear of the pain and discomfort you are going through as a result of Gleevec withdrawal.  No doubt that this problem is underreported.  

[mikefromillinois]

Been off Gleevec for four months now, after taking it nearly 14 years.  Wow. Pain has been debilitating at times, especially in my arms and hands, and has only increased during the Gleevec-free time.

 

If it's any consolation, with regard to the pain my experience was similar but things eventually got much better.  I'm almost seven months off Sprycel now (in a trial).  On Sprycel I had plenty of joint pain etc.  When I first stopped taking S all the aches and pains went away within a few days.  But then during months two to almost six the pains got very bad, more so than when I was taking the S - a type of withdrawal I suppose.  I even had pains in areas that never hurt before.  At about the six month point the pains left again.  I'm hoping it's for good this time.  Funny thing but when the pain came back and when it left for the second time it happened almost overnight.  Not sure what if anything that might mean, just seems to me like it should both come back and disappear gradually.  Who knows?  Good luck AllTheseYears.  Hang in there...

 

Mike

[tiredblood]

Tiredblood: my aching joints are also worse in bed and trying to move after remaining still for awhile. I take Aleve and Advil and trying to get by with that. My onc said something similar to Dr Cortes, that joint pains should subside within a few months. However, she also said that some had it for much longer and at least one person went back on Gleevec due to the pain.

Haven't tried Cymbalta before but have been taking gabapentin for many years primarily due to issues with peripheral neuropathy. Don't know if others have seen this but gabapentin allows me to sleep really well when taken right before bedtime. I've asked several doctors about any adverse effects of taking gabapentin for years and so far all has been positive.

The PN developed when I was on interferon + Ara-c. When I first went to MD Anderson that was the first line treatment for CML before the TKI trials that resulted in Gleevec. Actually, patients had to fail on first line before being allowed to enter the trial.

You mentioned hugging a heating pad. How does that work? Does it cover you like an electric blanket?

[tiredblood]

I'm hurting really badly today, like from shoulders to feet. I can brush my fingers up against something and it hurts. There should be studies on this TKI withdrawal syndrome. This is some weird pain. This may sound crazy, but it feels like a fluid pain, in that when it get in certain positions there is immediate pain (mostly lying down). The only positions where I get any relief at night, are lying on my back or stomach.

As far as the heating pad, I place it on the joint that is hurting the worst at the time. It does help. I've considered an electric blanket, but not sure how that would work with night sweats. If I weren't trying to loose response in order to get the BMB/complete diagnosis, I'd at least take one Tasigna per day to see if this pain could be alleviated.

I'm also considering reporting this side effect to to FDA.

Oh, I've noticed increased sleepiness since being off of the Tasigna. Not sure if it is from cessation or some undiagnosed disease process. Anyone else noticed increased sleepiness since coming off of your TKI?

[Buzzm1]

I'm a reductionist; first reduced my Gleevec dosage from 400mg to 300mg in early Dec., 2014.  Am now on 150mg for 24 more days, then go to 100mg (if PCRU holds).

 

The good news ... the fatigue is subsiding ... albeit very slightly and very slowly ... 

 

The bad news ... I'm on the ropes painwise ...

 

Gleevec withdrawal may be compounding one of my existing problems;  I've been fighting fairly severe shoulder/arm/wrist/hand muscle/nerve/tendon/ligament/bone problems for almost two years (this time around) mostly attributable to my C4-T1 neck injury.  Now, in addition, my neck has become inflamed which triggers my upper back muscles resulting in this large tight aching burning mass of muscles/nerves/vertebrae in the middle of my back, limiting breathing. among other things.  This has been going on for just under 35 years, sometimes more, sometimes less, but it's always there.

[gerry]

I've been off Gleevec for over two years now, side effects from the Gleevec disappeared over the first year.  Fatigue was never a big issue for me on Gleevec.

Muscle and joint pain continues to be an issue for some of the people who have stopped. Predisone can assist with the pain, but the pain appears to return once it is stopped. Gleevec was starting to cause me issues, but the joint pain disappeared once I stopped, I haven't had any issues related with joint pain and stopping TKI.

 

One good thing apart from controlling CML that Gleevec did for me was control the BP and cholesterol. These have returned and I am back on medication for them. I have had to stop the Lipator though as previously I had no issues with it, but taking it now caused muscle pain, so I now seem to be more susceptible to the side effects of it. 

 

I continue to have negative PCRs, but know of people who get the occasional blips. 

 

I feel the best I have in a long time, but am not looking forward to having to try a new cholesterol med, hoping the new one will be kinder than the last.

 

I continue to be tested every second month. My doc tells me that is the protocol, but I haven't been able to find anything on it. I would like to move it out to three monthly. I don't believe the CML will ever not be in the background, but hope the immune system continues to do its job in keeping it under control.

[Buzzm1]

I've been off Gleevec for over two years.  SNIP

I continue to be tested every second month. My doc tells me that is the protocol, but I haven't been able to find anything on it. I would like to move it out to three monthly. I don't believe the CML will ever not be in the background, but hope the immune system continues to do its job in keeping it under control.

gerry, after two years off of a TKI I would be lobbying to be tested no more often than every six months; I think that is the protocol.

[gerry]

Hi buzz,at the moment I am using extra tests to keep an eye on cholesterol. Plus you need to show me where the protocols for tfr are, I haven't been able to find them. I'd be happy with three monthly testing.

[Buzzm1]

Here are three month justifications after two years:

 

_{Within 1 month of screening, the patients underwent baseline assessments, including BM and PB qRT-PCR, and stopped IM. qRT-PCR was performed monthly for 12 months, every second month for 12 months, and then every 3 months during the subsequent follow-up for patients in TFR.}  http://www.bloodjour...so-checked=true

 

LAST study

 

Patients will have PCR testing every month for the 1st year, then every other month for the 2nd year, and then every 3 months for the 3rd year.   http://www.cmladvoca.../435-last-trial

 

​NOTE: mikefromillinois, is in the LAST study, and has successfully tested monthly for the first six months; he mentioned that he will now begin testing every two months ... 

 

story is also in the LAST study, and has also successfully tested monthly for the first six months.

[soundoff]

I have a meeting with Dr.Neil Shah at UCSF this month to join the trial. He will be joining the LAST study this month.

[gerry]

Thanks Buzz,

 

When I first stopped treatment I was at two monthly testing straight off, none of that monthly testing for me, so perhaps he is balancing it out. 

 

I see him again in March, so will again suggest moving it out to three months. I would only look at six monthly testing if I get past 5 years TFR. I like my doc and he has worked with me with dosage reduction in second year of PCRU and then with stopping. I just need to keep nagging him and he eventually comes round. He is in new territory with me being his first patient who has stopped their TKI, so I have to let him catch his breath occasionally. lol

 

I have to assume that Dr Hughes possibly still tests every 2 months and this is an Australian protocol. 

[pammartin]

I am going to try to get them at 4 months this time.  I am reaching my 4 year undetectable mark.  If I am comfortable with the 4 month testing then I believe it should be considered.  If I have to sign a waiver saying my family won't sue if it the CML would somehow take off in the 4 months then so be it.

 

My insurance increased over $200 for the same plan as last year, and it is the best plan BC/BS offers. My deductible went up, and my coinsurance payments did also.

 

If I can find ways to save money and be comfortable with my choices, then they are mine and it is my body.  As long as you remove the liability to them, I am not sure the majority of them care.

[gerry]

I can understand decisions for your tests being balanced against your payments, it would be something I would consider as well if I had to pay for these tests.

The word we are hearing from doctors is it returns to a "chronic" disease in regard to the speed of the return of it once past the first six months. 

I'm still working on my doc for the three monthly testing, I will get him there eventually. 

[Buzzm1]

the exponential nature of the increase indicates that BCR-ABL1 is doubling approximately every 15 days.21 In a patient with a BCR-ABL1 value of 1% IS and a 15-day BCR-ABL1 doubling-time, the loss of a major cytogenetic response could occur within 2 months.  bit.ly/1RfCc7U

 

Abstract http://www.bloodjour...pe2=tf_ipsecsha

[CallMeLucky]

If you google it, you will find studies on TKI withdrawal syndrome.  As with any long term drug your body chemistry seems to change.  From what I have read it seems like it gets better over time.

Let's also not forget that most of us are a bit older than when we started TKI drugs and we've been through a lot so hard to say what is TKI, TKI withdrawal, or just the result of the body getting older while dealing with some heavy duty issues!

 

[gerry]

the exponential nature of the increase indicates that BCR-ABL1 is doubling approximately every 15 days.21 In a patient with a BCR-ABL1 value of 1% IS and a 15-day BCR-ABL1 doubling-time, the loss of a major cytogenetic response could occur within 2 months.  bit.ly/1RfCc7U

 

Abstract http://www.bloodjour...pe2=tf_ipsecsha

 

Buzz,

I'd have to back track through my previous postings to find the link to a presentation given my Dr Hughes (he is our Australian CML expert particularly in Stop Trials) During that first six months the CML returns hard and fast similar to the rate experienced at blast phase. 

[Buzzm1]

Buzz,

I'd have to back track through my previous postings to find the link to a presentation given my Dr Hughes (he is our Australian CML expert particularly in Stop Trials) During that first six months the CML returns hard and fast similar to the rate experienced at blast phase. 

gerry, to me it only makes sense that, with relapse, the CML returns at the rate it returns at, which is different for each of us as the abstract shows ... during the various STOP studies, a number of the participants lost PCRU, but continued to toggle below MMR, and their PCR readings didn't progress, and they didn't have to restart their TKI's.