15 replies to this topic

[trailcml]

Hello everyone,

 

I was originally on 400mg of Gleevec but now on 200mg of imatinib after reducing from 300mg. My PCR has gone up over the last few tests (every 4 months) up but still quite low. I reduced from 300 to 200mg on my own recently as I was feeling very fatigued and having a hard time doing all of my daily work and trying to stay fit. This seemed to help but maybe its just a placebo for the hecticness of life.

 

Anyway, my onc is recommending that I go back to 300mg. I really don't want to and would like to wait until my next PCR in April 2018 to see if it's gone up again. His words were "I am not excited about the 200mg dose and would prefer to stick with 300mg." But, he didn't outright say that I need to switch back.

 

So, I'm kind of stuck and am looking for advice ... any words from the community out there would be very welcome. 

 

Thanks!

[Buzzm1]

trailcml, if I calculated your dates correctly, although still low, your PCR has been increasing ever since you reduced your dosage to 300mg.  

 

Am I correct?

 

Considering that you had only been on 200mg for a month before your last PCR, it's difficult to make an assessment from the effect of it, but since you were already trending up on 300mg, the odds are you will continue trending up on 200mg.  Might be an opportunity for you to switch to Sprycel 50mg.  

 

0 Month PCR = 20%

3 Month PCR = 0.3%

6 Month PCR = 0.03%

9 Month PCR = 0.019%

12 Month PCR = 0.0095%

15 Month PCR = 0.0104%

18 Month PCR = 0.0095%

12/2016 PCR = 0.0038%

01/31/2017 reduced to 300mg

4/5/2017 PCR = 0.0057%

8/23/2017 PCR = 0.0096%

11/15/2017 reduced to 200mg

12/13/2017 PCR = 0.0114%

[trailcml]

Hey Buzz,

 

Thanks for the reply!

 

Yes, you are correct. My numbers trended up after starting on 300mg. I've been slightly concerned with the trend but not really and my onc (CML specialist in Boston) hasn't either. 

 

My initial reason for wanting to go to 300mg were because 1) my eyes were really puffy and 2) fatigue. I really enjoy running and want to get back to distance running. On 400mg, I was tired but could manage some medium distance runs. However, it seemed to take too much out of me. 

 

I'd consider approaching my onc about dasatinib but I'm really concerned about 1) new side effects and 2) PE and how that may affect my exercise/running. My life is manageable now so I'm a little leary of the change.

 

When I was first dx'd, the community hospital onc wanted to put me on dasatinib (he described it as having the best response) but I went for a 2nd opinion and met with Dr. Druker and he pushed for an initial 600mg of imatinib and thought that dasatinib wasn't a good fit for me due to the possibility of PE and my lifestyle. That's how I ended up on imatinib. But, I'm open to it & will have to do some research.

 

Thanks for the suggestion & the reply. 

[Trey]

You will likely either need more Gleevec or another TKI.  I would switch to Sprycel.  I find the side effects profile much better than Gleevec, but I have only taken low dosage Sprycel (20mg). 

[trailcml]

Thanks Trey. I recall that you exercise regularly. Did you find more energy on Sprycel? And, how about PE? Have you ever had a PE?

 

Thanks!

[scuba]

You are a very good candidate for low dose Sprycel (20 mg) which will likely keep you below 0.01% or even PCRU.

PE risk at 20 mg is very low. I take 20 mg as a maintenance dose and am currently PCRU. No side effects that I can feel although my CBC (blood counts) are still slightly anemic even on this low dose. No marathons in my future, but I can exercise and run as needed to keep weight off. 

[hannibellemo]

I would not be happy with that trend upward and I would be concerned, but that's just me. If you switch to Sprycel I would have them start you at 50 mg or below. I did develop a pleural effusion after 2.5 years at 100 mg but have had no issues with 50 for over 5 years. It also costs 50% less than 100 mg - bonus! I believe 20 mg reduces the cost another 50%, at least on my plan it did.

 

Good luck and Happy New Year!

[Buzzm1]

I would not be happy with that trend upward and I would be concerned, but that's just me. If you switch to Sprycel I would have them start you at 50 mg or below. I did develop a pleural effusion after 2.5 years at 100 mg but have had no issues with 50 for over 5 years. It also costs 50% less than 100 mg - bonus! I believe 20 mg reduces the cost another 50%, at least on my plan it did.

Pat, those under 65 normally have their drug cost covered by insurance;;drug cost, as it relates to quantity, only becomes an issue for those 65, and over, on Medicare Part D; in the words of the immortal Pogo, "woe be us."

 

Good luck and Happy New Year!

[hannibellemo]

Pat, those under 65 normally have their drug cost covered by insurance;;drug cost, as it relates to quantity, only becomes an issue for those 65, and over, on Medicare Part D; in the words of the immortal Pogo, "woe be us."

 

Good luck and Happy New Year!

Buzz, not sure I'm understanding your point. Perhaps I should clarify that last year when I was still covered under private insurance the price breaks were at 50 mg. and 20 mg. However, on medicare, I'm still only paying 50% of the price for a 100 mg dose. 

 

Am I missing something? I mentioned it because trailcml is only in late 40s.

[mscl]

I have somewhat minimal side effects with Sprycel. I developed PE after a few years on 100 mg. Reduced to 70 mg, but still developed PE. Reduced to 50 mg, no PE, but developed a pretty severe skin rash after a year. Now reduced to 20 mg for almost a year now. I have remained undetectable for a few years even with the reduced dosages and even with brief 4-6 week breaks in the the TKI to clear up the PEs and rash. I do have some slight tendon pain in my ankles, but lessons once I start moving. Dx was in February 2012.

[Buzzm1]

Pat, sorry if I confused the issue; most, covered under private insurance, have a small copay regardless of drug price, or quantity.  Such is not the case under Medicare Part D.

[Jan0080]

With my Blue Shield of Calif insurance, Sprycel costs $200 per month copay regardless of dosage.

[Pin]

I was originally on 400mg of Gleevec but now on 200mg of imatinib after reducing from 300mg. My PCR has gone up over the last few tests (every 4 months) up but still quite low. I reduced from 300 to 200mg on my own recently as I was feeling very fatigued

I also reduced to 200mg Gleevec on my own, whilst it did seem to improve things a little, it certainly wasn't enough improvement for me, and within one test (3 months) my PCR crept from .002 to .005 - probably nothing to be concerned about and maybe not a trend, but my eventual goal is to try cessation, and this looked unlikely to help long term.

I was scared of switching, but in hindsight, it was a brilliant decision for me (so far!). It has dramatically improved my quality of life. If I was running at about 30% of my capacity and quality of life on Gleevec 200mg, I feel like I am at 85% on Tasigna 600mg. I am capable of much more exercise, I have added weights to my regime, and I don't notice any fatigue at all in comparison to Gleevec.

I can't even imagine how I'll feel if I get to reduce it or stop. Which is my goal, I don't particularly want or think I need to be on this dosage long term.

[Buzzm1]

I also reduced to 200mg Gleevec on my own, whilst it did seem to improve things a little, it certainly wasn't enough improvement for me, and within one test (3 months) my PCR crept from .002 to .005 - probably nothing to be concerned about and maybe not a trend, but my eventual goal is to try cessation, and this looked unlikely to help long term.

I was scared of switching, but in hindsight, it was a brilliant decision for me (so far!). It has dramatically improved my quality of life. If I was running at about 30% of my capacity and quality of life on Gleevec 200mg, I feel like I am at 85% on Tasigna 600mg. I am capable of much more exercise, I have added weights to my regime, and I don't notice any fatigue at all in comparison to Gleevec.

I can't even imagine how I'll feel if I get to reduce it or stop. Which is my goal, I don't particularly want or think I need to be on this dosage long term.

Pin, in that your PCR has been <0.01 for a considerable length of time, I am surprised that your onc found it necessary to put you on a full dose of Tasigna to begin with.  Hoping the New Year brings more oncs around to the position that a high TKI dose isn't necessary, during a TKI switch, when a CML patient has been trending at a very low PCR level for a lengthy period of time.  PS: When you have a chance please update your Signature to reflect your TKI change and your last few PCR readings; thanks.

[trailcml]

Thanks to all for the great comments ...

 

For the drug cost related questions, I'm very fortunate that my insurance picks up the full cost and I don't have a copay.

 

I'm very concerned about switching. I've been living with this reduced capacity and don't want to bring out other side effects but am working with my onc exploring my options. We're starting with a drug level test and then will consider a switch once we have those test results. I'll make sure to keep everyone posted.

 

It's great to know that there are others out there in a very similar situation. I really appreciate the responses.

[Red Cross Kirk]

Pat, sorry if I confused the issue; most, covered under private insurance, have a small copay regardless of drug price, or quantity.  Such is not the case under Medicare Part D.

I used to have a $100 copay per refill, but the state of Oregon and/or ACA (Obamacare) disqualified that health insurance plan and so we had to get an insurance plan that complied with the new regulations.  The new plan has a 30% copay on specialty prescriptions, which for me is over a $1000 per 30 day refill.  Fortunately my actual copay has gone to zero because the generic imatinib supplier writes off or covers the copay somehow.