67 replies to this topic

[Buzzm1]

Regarding the need for monthly testing after cessation of TKI drugs, is there any published information as to the rate of return  of CML when PCRU is lost?  Although it would always be preferable to catch the loss of PCRU as soon as possible after cessation, dictated monthly testing appears to mostly be done in support of trial stats.  Not to deter science, but in my particular case, if I do manage to reach cessation, I am not planning on reverting to monthly testing, believing that from what I know now, that if I lose PCRU, the return of CML will be gradual enough to be treated with a relatively low TKI dosage, even with 3 month testing.  Of course, if PCRU is lost, there would be the confirming one month test, prior to restarting any TKI dosage.  My Onc will have her say ... but first I have to reach my point of cessation which is July 4, 2016 ... you know, as was once said by somebody ... the best laid plans of mice and men ... 

[chriskuo]

You would not need to test monthly permanently.  If you remain PCRu, I would assume you could revert to quarterly testing after a certain length of time.

[gerry]

Dr Hughes who conducts the Australian trials commented that the CML returns at a fast rate during that first six months, which is why the preference is for monthly testing in the beginning. I've asked my doc about the speed of return once you are past that time and he commented that it returns to the chronic phase. This was also backed up by one of the docs on the French trials. I'm hoping to eventually move to quarterly testing, but as I mentioned earlier my doc still likes it to be done every two months.   

[jjg]

Both times I have stopped (pregnancy related) the CML has returned fast. The first time it was realistically always coming back as I had just reached pcru. The second time I had been pcru or <= 0.004 for 2 years and in 6 weeks it went from pcru to 0.12. We decided to test at 6 wk intervals until I became detectable (now every 3 weeks to see how the interferon is going) but in pregnancy the urgency to catch the relapse early isn't really there as you can't just restart your tki.

[story]

Just an update- month 5 and still undetectable for BCR-ABL. Very hopeful. A word to those considering cessation, talk to your doc about a dose reduction if possible before cessation. I have what i believe is TKI withdrawal syndrome. My shoulders, elbows and hands are very sore and stiff, almost unusable in the morning. Worth the price of admission but definately a pain in the ass.

[scuba]

Just an update- month 5 and still undetectable for BCR-ABL. Very hopeful. A word to those considering cessation, talk to your doc about a dose reduction if possible before cessation. I have what i believe is TKI withdrawal syndrome. My shoulders, elbows and hands are very sore and stiff, almost unusable in the morning. Worth the price of admission but definately a pain in the ass.

 

Interesting - I had that develop as well - mostly in the hands. I didn't' think it was TKI withdrawal related (even had an RA test taken which came back negative). My primary doctor told me to eat more protein and it faded pretty quickly after that. Not sure why that should be the case - I thought it would be the opposite. I went back to my regular diet once the joint stiffness disappeared. Very strange though.

 

http://eatwellenjoyl...ld-this-be-you/

[Buzzm1]

SNIP

A word to those considering cessation, talk to your doc about a dose reduction if possible before cessation. I have what i believe is TKI withdrawal syndrome. My shoulders, elbows and hands are very sore and stiff, almost unusable in the morning. Worth the price of admission but definately a pain in the ass.

I've been in the process of lowering my original Gleevec 400mg dosage since December, 2015 300mg, down 50mg with every quarterly test since.

 

Trey had mentioned more than a few times that Gleevec does work to alleviate arthritic/joint pain.  

 

I have a fairly severe case of arthritis in my neck and back, as a result of a neck injury in my youth.  I can confirm the renewed arthritis, soreness, and stiffness, which is indeed worsening as I lower the dosage.  Gradually, as far as pain is concerned, isn't necessarily better.  Even now I am considering taking a Naproxen Sodium to alleviate the ache and it's still early in the game.

[Trey]

Buzz is accurate in his comments about arthritis and TKI drugs.  But I think a somewhat different mechanism occurs for those simply withdrawing from the TKI drugs than for those like Buzz with actual arthritis.  The TKI withdrawal reverse side effects is mainly due to the muscle/ligament/tendon cells becoming drug dependant just like an addict.  After that is withdrawn there is a withdrawal phase.  It does not matter that the TKI drug did not make the muscle/tendon/ligament "feel good', they simply adapted to the presence of the TKI drug.  Drug addicts do not simply crave drugs because they make them feel good, they crave them at a cellular level, also.  The body becomes dependant.  So also after the TKI drug is withdrawn the cells look for the drug and it is not there.  So a reverse adaptation is then required as the cells send out TKI craving signals. 

[scuba]

Buzz is accurate in his comments about arthritis and TKI drugs.  But I think a somewhat different mechanism occurs for those simply withdrawing from the TKI drugs than for those like Buzz with actual arthritis.  The TKI withdrawal reverse side effects is mainly due to the muscle/ligament/tendon cells becoming drug dependant just like an addict.  After that is withdrawn there is a withdrawal phase.  It does not matter that the TKI drug did not make the muscle/tendon/ligament "feel good', they simply adapted to the presence of the TKI drug.  Drug addicts do not simply crave drugs because they make them feel good, they crave them at a cellular level, also.  The body becomes dependant.  So also after the TKI drug is withdrawn the cells look for the drug and it is not there.  So a reverse adaptation is then required as the cells send out TKI craving signals. 

 

Nah ... it's not drug dependency like an addict. It's an electrolyte imbalance that has to sort itself out. Fortunately it does sort out:

 

http://www.ascopost.....aspx?nid=17458

[alexamay09]

Good luck to all those pioneers in the US.  There are no such trials here but it is very encouraging to see even reductions in meds can be a possibility.  Dosages are very standard here at the moment and not much flexibility.

 

Alex

[AllTheseYears]

Good news, all of you in the cessation trials and off TKIs otherwise. I continue into month four toward my goal of TFR (Treatment Free Remission); not in a trail but under hem/onc supervision.  I've been hit hard with muscle, bone and joint pain - almost disabled.  However, I do think my brain is working better; I'm convinced that my eye sight and hearing have improved.  

 

I look forward to continually hearing from others going for TFR.  Best of luck to you. 

[kat73]

"First, Brains, and THEN hard work!" --- Eeyore.  Your body is getting its priorities straight, that's all.  So happy to hear of these successful weeks reeling off!

[tiredblood]

Does anyone know how long this TKI withdrawal pain, HAs, etc. last?  I'm having some of the worst pain I've ever had since stopping nilotinib and I thought the initial joint pain was bad when I started the drug.

[mikefromillinois]

Wondering that myself.  I am six months into a bye-bye TKI trial.  During the first month or so I felt fifteen years younger, with virtually no aches or pains.  I had plenty of them during the years I took Sprycel.  For the last couple months I have had pains in old pain locations and new ones and the pain has been really bad.  Overall I am still very grateful to be off the tki though.  I'll be seeing my doc next week and will get his thoughts on the matter.

 

Mike

[tiredblood]

Wondering that myself.  I am six months into a bye-bye TKI trial.  During the first month or so I felt fifteen years younger, with virtually no aches or pains.  I had plenty of them during the years I took Sprycel.  For the last couple months I have had pains in old pain locations and new ones and the pain has been really bad.  Overall I am still very grateful to be off the tki though.  I'll be seeing my doc next week and will get his thoughts on the matter.

 

Mike

I felt pretty good the first week or so off of the TKI too.  I got a few nights of wonderful sleep... then, the pain set in which awakens me at night.

[AllTheseYears]

Seems like those of us going for TFR are testimony to the old adage: There is no free lunch!  Pain seems to be common as we go through TKI cessation.  There are times I'm miserable.  Still, I'm happy with my decision to go off Gleevec under doc supervision.  FYI: I had no Gleevec reduction before cessation; went "cold turkey" in September. Also, hem/onc did not warn me of withdrawal symptoms, which at times make me miserable - day and night. Doc is happy to see me only quarterly, if all goes well. Visit set for January. I wonder if I'm being properly supervised. 

 

In another matter:  I've read that most TKIs will remain in a high insurance tier, even after going generic (mostly this applies to Gleevec.)  The financial burden likely will remain.  Hope I can avoid it. 

[AllTheseYears]

JJG:  My thoughts are with you as you try to begin/expand your family.  You are brave. 

[gerry]

I've been TFR for 2 1/2 years now, but Gleevec still seems to haunt me.
Prior to diagnosis I was on a statin for cholesterol. After taking Gleevec my cholesterol levels dropped into the low area, so I came off the statin. After stopping Gleevec, I found I had to return to taking a BP med and a cholesterol med. BP med is fine, but the cholesterol meds are causing me issues. I've tried a couple of the statins and each one has given me muscle pain in the legs, which is apparently where this issue starts. So after stopping and starting these I've moved onto one of the other cholesterol drugs which isn't a statin.
Ezetimibe is supposed to cause less issues, but I seem to be getting leg cramps from it, the one I had the other night was far worse than anything Gleevec threw at me.

I have to wonder that even though I've been off Gleevec a while, whether it somehow changes the chemical makeup of our bodies, I can't think of any other reason why I could take statin prior to Gleevec and now can't. I've had two tries of the Ezetimibe and both times I have wound up with leg cramps. I've wondering if I do the Gleevec trick and split the dosage morning and night to see if that lessens the side effects.

Other than the cholesterol med, I don't seem to be experiencing the muscle and joint issues that a number of others who are TFR are experiencing.

[Dom]

Gerry, I was on statins for years with no problems. Then suddenly, the muscle aches were so severe that I couldn't get from the bedroom to the bathroom. I had to keep a walker by the bed, and I used a stool in the shower. The GP put me on something that does not cause this type of muscle pain.

But the important point is that all this happened BEFORE I was put on gleevec. It just happens. Might not be related to the tki at all.

[gerry]

Thanks Dom - guess the TKIs are always the easy thing to blame. lol

I'm having a go at splitting the dose of the Ezetimibe, I'm just looking to try to scrape in under the required level of the "good zone" for cholesterol.