12 replies to this topic

[Buzzm1]

Predictive factors are still unclear. According to EUROSKI data, the frequency for relapse seems to be lower for patients with more than 8 years of TKI treatment, for longer MR4 than 5 years, for patients who received 2^ndgeneration TKI as a first line treatment, and in case of patients that switched treatment, when switch was due to intolerance to the drug and not due to resistance. More issues are under investigation, e.g. immune control of the disease and genetic background of individual patients.

39% of patients in EUROSKI experienced adverse events from stopping in the form of pain in muscles, bones or joints, with 6% in severe forms (grade 3 or 4), and 8% experienced other stopping side effects like sweating, skin disorders, depression, fatigue and weight loss. In ENESTop (Nilotinib-Stop) 53% of patients experienced some form of muscle/bone/joint pain, but only 2% with severe forms.

A recent review article published by Susanne Saußele and other experts in the LEUKEMIA journal on 2 May has published a recommendation what criteria to use when stopping treatment moves into mainstream clinical practice (doi:10.1038/leu.2016.115).

 

 

http://cmladvocates....ymposium-at-eha

 

 

[scuba]

It's interesting that stopping treatment leads to "reverse" side effects as the body adjusts off the drug. I experienced this (although didn't realize it at the time) when I stopped Sprycel for nine months last year. In month three, my hand joints became very stiff in the morning. I thought I was developing rheumatoid arthritis - the symptoms were identical. This went on for months and I even visited a rheumatoid specialist who tested for the antibodies - no sign of it. I take lots of Curcumin so I was puzzled at the "arthritis" I was experiencing.

 

Another month or two later it went away and hand joints went back to normal. And of course when I resumed Sprycel (20mg), I had the headache for a day or so just like I was starting the drug for the first time.

 

For anyone who wants to try stopping, I believe that dose reduction first is the way to go. Stopping cold turkey could invite nasty 'reverse' side effects.

 

Our drugs are not normal or "healthy" for our bodies - that's for sure. The sooner we can get off of them the better. This is why stopping and/or dose reduction is important to explore. 

[Frogiegirl]

Scoobs stopping cold turkey is exactly what my doc wants to do for my pregnancy. I on the other hand I would like to go one 3 month cycle on half dose then stop completely. I test next week and if it's undetected, that would complete my year of pcru. I am thinking of going one more cycle ( for timing reasons of the pregnancy). I jane lost so much sleep over this decision, I'm still confused on what to do. I'm not trying to orphan my boys. Sigh. ........

[Trey]

I would like to go one 3 month cycle on half dose then stop completely.

 

Not a good idea.  You need to go into the stoppage on full dosage and at the last possible moment in order to get through the pregnancy with minimal loss of response and minimal use of Interferon, etc.

Edited by Trey, 09 June 2016 - 03:30 PM.

[scuba]

Scoobs stopping cold turkey is exactly what my doc wants to do for my pregnancy. I on the other hand I would like to go one 3 month cycle on half dose then stop completely. I test next week and if it's undetected, that would complete my year of pcru. I am thinking of going one more cycle ( for timing reasons of the pregnancy). I jane lost so much sleep over this decision, I'm still confused on what to do. I'm not trying to orphan my boys. Sigh. ........

 

You will not orphan your boys - worst case is your CML expands over nine months, but not enough to either terminate the pregnancy or create a significant danger to you. Just as an FYI - I stopped for nine months last year  (yes - cold turkey - that's the only way to do it in your case) and I did lose PCRU, but I remained in MMR (one log increase only). I then went back on my low dose Sprycel (20mg) and regained my earlier low residual/borderline PCRU after two months.

 

I seem to recall that it takes nine months to make a baby - even 8 months is o.k. - but Trey may know how to speed that up.

 

You are going to be fine.

 

p.s. full disclosure: My slow loss of PCRU may be due to the fact that I take a lot of Curcumin and other supporting nutrients for my immune system such as vitamin D3 and K2 - so even without Sprycel around, CML had a tough time trying to regain a foothold. Too bad it's no cure!

Edited by scuba, 09 June 2016 - 04:01 PM.

[tiredblood]

 

 

For anyone who wants to try stopping, I believe that dose reduction first is the way to go. Stopping cold turkey could invite nasty 'reverse' side effects.

I could not agree more. What I experienced was not typical joint pain.  I'm of the opinion that it was tendon or ligament related.  I felt great the first three to four days after quitting cold turkey, but then the pain set in and was different that any I had ever experienced.  If I ever go off of the TKI again, I'll definitely do a dose reduction and maybe even a long, drawn out one.  

 

My first two to three weeks after initially starting Tasigna were horrible.  I'd be curious to know if patients who have a rough time initially are more likely to have the TKI withdrawal syndrome quitting cold turkey.

[gerry]

Muscle and joint issues don't happen for everyone, it is not something I had. There was thought that maybe it was related to how long you were on a TKI, but Scuba was on a TKI for less time then I was, so there's that theory gone.

[jjg]

I've stopped twice (G&T) and felt awesome both times.

Froggiegirl: I've attached (I hope) a chart of what my PCR has done when I stopped. The second time was the pregnancy attempt that worked. The black markers are PCRU. Both times it has risen fast but the second time after nearly 2 years of PCRU or v close I got one more PCRU result after stopping but still lost MMR before the end of the first trimester. The PCRs leveled off when interferon was started and dropped a bit once I reached full dose. The upwards blip at 59 months is when I stopped all treatment for birth and then a month of breastfeeding (couldn't look after a newborn on interferon). I believe that the way my PCR took off is typical of those who are going to "fail" the stop trial and as you can see both times I have responded to reintroduction of therapy. We did have a lowish birth weight baby but 5 months later she's still growing along the 3rd percentile so it looks more as if she is just a small person.

The other day I met a lady who stopped for a planned pregnancy and is still PCRU with an 18 month old child. My obstetrician treated another who remained PCRU until late in the pregnancy and then the CML never took off.

IMO I wouldn't be lowering treatment before 10months or more off treatment because of worrying about a bit of muscle pain or, as I suspect you are more thinking, wanting to test your undetectableness. If you want to stop then you have to accept that you may loose response BUT there are treatment options for you.

 

 

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[kat73]

frogiegirl - I'm glad you're getting some good advice here.  Still, I'm so sorry for the gnawing confusion and uncertainty you're experiencing - very draining!  Once you make a decision (or decisions) you will feel much better and ready to go to war.  Even though others have gone before you, it's still pioneer territory and I admire your bravery.  Do you feel you might benefit from a consultation with one of the True Biggies in CML research?  To break the tie, so to speak, or maybe more accurately, to give you a clear plan?

[Frogiegirl]

Kat73. Hmmmm never thought of that. I wonder how I could go about contacting one of them to ask? I see dr. Deineger at the huntsmans in slc ut, I was under the impression he was a cml Specialist? I'm just stuck between between a rock and cml;)

[gerry]

Would your insurance cover you for getting your eggs harvested and frozen and then trying invitro when you feel more comfortable about stopping?

[Frogiegirl]

I'm not sure if my insurance would cover that. ...but my age is also a factor I'm getting up there:(

[kat73]

frogiegirl - I believe Dr. Deineger would certainly count as one of the Dr. Bigs. You could possibly ask him, in one of your discussions about how/whether to proceed, whether or not he might like to ask someone else in the field.  But otherwise, if I were in your shoes, I'd be trusting whatever he told me to do.