28 replies to this topic

[mlk210]

Has anyone switched from a second generation drug to Gleevec? I was on 100mg Sprycel until December when I got a plural effusion. Off meds for 3 weeks and back on 70mg Sprycel, but I feel another one. I've been okay on Sprycel except for this and really don't want to change drugs. Which is exactly what my doctor is going to have me do once she knows I have another one. Truth is, I can't keep having these episodes of restricted breath. It makes keeping up with my twins difficult.

 

The fact I'm 39, I feel as though Gleevec is the safest long term, but I'm not sure my doctor would be receptive to it. When the topic was discussed after my first PE, she mentioned Tasigna. If I have to  make it work I will, but wondered if anyone has switched to Gleevec after a second generation and how their numbers were affected.

[Terran]

I'm contemplating the idea. Tasigna is kicking my add and I am spending too much time seeing cardiologists. I'm 45.

[Buzzm1]

mlk210, sorry to hear of your continuing PE problem.

 

Gleevec is the least toxic of the TKI's.   If someone has to be on a TKI longterm, with a lower overall probability of problems, Gleevec (Imatinib) would be my choice, at as low a dose as feasibly possible.

 

what are your numbers and what is your history? tia ... 

 

PS .. It's a fact that second generation Sprycel and Tasigna have a higher efficacy but that can come at a price

[scuba]

mlk210 - what is your PCR status? If you are MMR or below - perhaps you could try a very low dose of Sprycel (20mg) after your P.E., resolves and see if you can hold your PCR response (test monthly until baseline is established). 

[mlk210]

Buzz and Scuba- In August 2015 (after one year of treatment on 100mg Sprycel) I was undetectable. In November I came back detectable but not quantifiable. They tested in December when I got the effusion and it was undetectable again. I've been on the 70 for about 6 weeks now and I'm waiting the results to come in from a blood draw yesterday. I can't deny Sprycel got me down quick, but I worry about taking these for so many years.

[Buzzm1]

mlk210, pending your PCR results and screening for another PE, hoping your doctor will find a satisfactory solution.  

[mscl]

I developed PE after a little under 4 years on 100 mg Sprycel. Went down to 70 mg, PE came back, but the first PE wasn't all clear so my theory was it was too soon to start back on it. Went off everything for about 5 weeks to clear PE and went back on 50 mg two weeks ago. Not feeling any PE yet. Onc wanted me to go on Tasigna, I'm not wanting that yet. I'm interested in any responses or results with Gleevec you get.

[trailcml]

My pcr results have been 18% at dx then 0.3%, 0.03% and 0.019% at 3, 6 and 9 months. I have my 12 month next month and am hoping for pcru. I started on 600 MG of Gleevec for the first month but my wcb went too low and so my dose was reduced to 400 mg. I've been on 400 ever since with minimal side effects (slight fatigue and periorbital edema). Btw, PE really scared me as I enjoy running and my onc said it's always a possibility on sprycel even years later.

[CallMeLucky]

There aren't many who have done this but with Gleevec going generic I expect we will see more. Conceivably if there was nothing high risk that warranted Sprycel in the first place then Gleevec may maintain well.
Gleevec is considered lower toxicity but it also hits a broader target and is known to have more side effects, most notably fatigue, muscle pain, and abdominal issues. Not everyone has the same so your mileage may vary.
In general Gleevec had more side effects that weren't as dangerous where the second generation tki had fewer side effects but the ones it had were more serious, like a PE.

Best of luck, lots of options I'm sure you'll find something that works for you, that is the challenge with chronic care, but at least the cml is under control. They'll figure out the rest.

[r06ue1]

Interesting that they started you off on Sprycel, I asked my Oncologist about starting on that and he basically told me no (probably due to the toxicity) and that he would only put me on that if Gleevec showed no results.  I would ask your Oncologist about switching or at least lowering the dosage of Sprycel to half and see how that goes.

[scuba]

Buzz and Scuba- In August 2015 (after one year of treatment on 100mg Sprycel) I was undetectable. In November I came back detectable but not quantifiable. They tested in December when I got the effusion and it was undetectable again. I've been on the 70 for about 6 weeks now and I'm waiting the results to come in from a blood draw yesterday. I can't deny Sprycel got me down quick, but I worry about taking these for so many years.

 

Another approach is to try intermittent dosing:

 

http://www.ncbi.nlm....pubmed/19092801

 

This study was from 2009 and I have learned since that many older CML patients (M.D. Anderson) do very well using this strategy.

Because CML is a slow disease in chronic phase, intermittent dosing could very well work as a strategy to maintain response and manage P.E. (i.e. keep it from developing).

 

I am looking to do this myself sometime this year. One month on - one month off.

[Tori]

Hi - I switched from Tasigna to Gleevec after 3 months due to side effects. My doctor started me on Tasigna when diagnosed in 2014. I lost a ton of hair on Tasigna and being a 36 year old female, that was extremely distressing. My doctor switched me to Gleevec and I've been on it ever since (and my hair started growing back immediately after the switch!). I had minimal side effects on Gleevec and when I switched to taking it right before bed, they have all subsided. I also found that the twice daily dose of Tasigna and strict eating rules were all consuming. I felt like I was constantly thinking about my medicine and having cml. Gleevec has been very freeing in that respect! Since there are options, I think it's worth finding the medicatation that works best for you, as long as you are maintaining an acceptable response level.

[missjoy]

http://www.ncbi.nlm....pubmed/25765543

Second generation TKIs probably have some benefits for high risk patients.

[alexamay09]

Hi - yes. I started on 2nd generation TKI's because of suspected accelerated phase.  After a while I had PE on Sprycel and heart ultrasound wasn't great.  I switched to Glivec and have been on it for nearly a year.  I've never looked back.  Since going on to Glivec I now exercise 6 days out of 7, including running and metafit. I am getting fitter and stronger. I couldn't do any of that while on high dose Sprycel.  My last 2 results were .038 - it took me a while to get there but so far so good and no change for the worse since starting Glivec.

 

Alex

[AllTheseYears]

Just to let you know that I took Gleevec more than 14.5 years.  Yes, I had numerous side effects but none life-threatening or debilitating.  Now I'm in cessation under my hem/onc's care; last dose of Gleevec was in August.  Wanted to stop the whole TKI roller coaster. However, my last blood lab registered 0.04 after six months cessation and 14 years undetectable (< 0.01).  I'm bummed; might be back on Gleevec if next check-up in April shows higher reading, according to my doctor anyway.  I want to hold out as long as possible without Gleevec (and Gleevec would remain my choice) even if I can't say "Goodbye TKI" forever.  

 

To other longterm survivors out there:  Are you just fed up with the whole CML/TKI thing?  I worry my attitude might have become my biggest CML "side effect." 

[mikefromillinois]

I can remember my diagnosis day.  My first onc had been treating CML for years and told me that I was fortunate to have the good kind of leukemia - going on to say that in the old days (pre-tki) when he talked with newly diagnosed patients he sent them for a transplant, and many didn't make it.  Nowadays most newly diagnosed CML'ers can expect to live a normal lifespan.  I am in an age group in which I regularly learn of an acquaintance passing away - many from cancer, and many much younger than me.  I wouldn't trade my diagnosis for any other kind of cancer...that's for sure.  Just sayin.

[scuba]

Just to let you know that I took Gleevec more than 14.5 years.  Yes, I had numerous side effects but none life-threatening or debilitating.  Now I'm in cessation under my hem/onc's care; last dose of Gleevec was in August.  Wanted to stop the whole TKI roller coaster. However, my last blood lab registered 0.04 after six months cessation and 14 years undetectable (< 0.01).  I'm bummed; might be back on Gleevec if next check-up in April shows higher reading, according to my doctor anyway.  I want to hold out as long as possible without Gleevec (and Gleevec would remain my choice) even if I can't say "Goodbye TKI" forever.  

 

To other longterm survivors out there:  Are you just fed up with the whole CML/TKI thing?  I worry my attitude might have become my biggest CML "side effect." 

 

Alltheseyears - bummer on becoming detectable. You can hold out until next test to see if your PCR rises above 0.1% (I.S. scale). I would not wait until April. You should have monthly PCR's while off Gleevec. If your PCR stays below 0.1 - you can go another month. There is a chance that your PCR will drop back down (immune system kicking in). If your PCR goes above 0.1, then you need to re-start a TKI. You might consider switching to a low dose second gen (Sprycel? 20mg) to see if that puts you back down again and enable you to try cessation again. 

 

Good luck!

[Buzzm1]

Just to let you know that I took Gleevec more than 14.5 years.  Yes, I had numerous side effects but none life-threatening or debilitating.  Now I'm in cessation under my hem/onc's care; last dose of Gleevec was in August.  Wanted to stop the whole TKI roller coaster. However, my last blood lab registered 0.04 after six months cessation and 14 years undetectable (< 0.01).  I'm bummed; might be back on Gleevec if next check-up in April shows higher reading, according to my doctor anyway.  I want to hold out as long as possible without Gleevec (and Gleevec would remain my choice) even if I can't say "Goodbye TKI" forever.  

 

To other longterm survivors out there:  Are you just fed up with the whole CML/TKI thing?  I worry my attitude might have become my biggest CML "side effect." 

AllTheseYears, sorry to hear that you are detectable again.  We'll be pulling for you to remain MMR.  If not, Scuba's suggestion of Sprycel 20mg, because of it's higher efficacy, might be just the ticket for you.  If I can't hold PCRU during my Gleevec reduction and eventual cessation, I hope to try that myself.

[kat73]

AllTheseYears - All good advice from above.  It's probably just a tiny blip and you'll go right back, although anything after 14 years of nothing is understandably unnerving.  I tend to think that if you could possibly stand to hold out until April, that will tell you more than if you rush back in March.  But, the mind does race.  Try and keep perspective - worst case scenario is that you have to go back on a TKI.  But, it may not bother you as much as before - sometimes breaks take care of SE's.  Plus, you will be fine - you will go back to undetectable - no harm, no foul.  You'll be able to try cessation again.  Third, we are getting really close to some real solutions - you just have to hold out for a few more years.  You've done it before - you're a veteran!  You can do it again.  I was crying once over the phone to my best friend about all my myriad of woes and that I was coming up on multi-part surgeries and long recovery and years of fiddling with things yadda yadda, and she said quietly, "But it's doable."  Profound, that.

 

But yes, to your second question.  I feel I'm long-term - 6-1/2 years - and I am finding that I think my biggest problem is "fighting the problem," as my mother-in-law used to say.  Especially these days with so many newbies getting to undetectable so quickly it seems, I feel more and more antsy with my same-old regimen.  And that's because, never, since 2009 have I felt really good.  I'm tired of that.  Really tired.  All those years of ups and downs, confusion, new studies and new guidelines and new drugs - whew!  Roller coaster is the right description all right.  And yet, here I am with nothing changed really.  I'm still stuck taking the stuff.  I'm still stuck in limbo between certain death and cure.  Still stuck with no end in sight.  Fed up, you betcha.  You must feel double this, since 14 years is a long time to have gotten used to thinking maybe this was beaten.  Then to have made it TKI-free to 6 months and then an appearance - that must have felt crushing - almost like going all the way back to all the emotions surrounding that long-ago diagnosis.   I think CML is uniquely vexing because it's becoming clearer now that we're pretty safe from the dying part, and the crummy way we feel on our meds makes us long to be free.  We're emboldened to think maybe we can.  It can become an obsession, especially the longer we're on them.  You are not only a veteran, you're a pioneer - you're among the vanguard to figure out what the new 15 and 20-year attitude toward CML should be!  Let me know when you've found it and I'll copy you  

[scuba]

Just to add ... holding off until April is "o.k." if you can't get tested next month. CML in chronic phase especially when in deep remission (CMR, MMR, CCyR) is a slow disease. It takes considerable time for the CML population to build. It is most likely why PCR's are only done every three months during treatment. If failure occurs, they can catch it in plenty of time.

 

For what it's worth, I was PCRU 'borderline' (i.e. PCR < 0.01%) and I stopped Sprycel 20mg anyway to test if i can keep my PCR at that level. I was successful for 4 months or so before I too had a blip up. But it also went back down again the following month. I attribute that to testing precision. After nine months of staying off Sprcyel 20mg (9 glorious drug free months - even managed a tan during the summer), I had enough of an increase (one log) albeit below MMR that I decided to re-start Sprycel. I reachieved PCR < 0.01% within two months.

 

My point is that if you have an o.k. risk tolerance, you could do well to discover what your body's responses are by experimenting a bit. Get to know what works, what doesn't, what minimum dose gives you best response that works best for you including changing TKI's to see if you can "permanently" achieve PCRU and try and stop again.

 

Most doctors can't prescribe this to you for liability reasons - their own "risk" tolerance in terms of their practice. One size fits all is the way they tend to proceed because it's "approved". Some doctors will work with you. I hope yours is one of them.

All the best