11 replies to this topic

[LivingWellWithCML]

Hey all,

Well, I started my 4th year on Gleevec and the sky hasn't fallen yet.  The miracle of TKI medications!  Any thoughts, feedback or encouragement about my journey is welcome as always:

• PCR went from 0.01% IS to 0.05% IS over the past three months.  It's been bouncing around these levels ever since Emory Winship moved to International Standard in 2012.  I wonder why Gleevec 400mg can't beat down my CML any further?  I'm not sure what I can do differently to deepen my response, because dosage increase or TKI change is not advised by my CML specialist.  His philosophy is pretty simple = (CCyR + stable MMR + manageable dose) = stay the course.
• My side effects have been very limited on 400mg - thank goodness.  For me, the big thing is making sure that I take Gleevec with a decent amount of food; when I do, then the daily dose is uneventful.  I'm taking probiotics occasionally to help with gut health, but I'm not sure if it's doing anything.
• I continue to take Vitamin C with Gleevec & breakfast every day, but with the fluctuating PCR, I'm not sure if it's doing anything either.  There's no reason to stop taking it though.  Or perhaps I should take more than 500mg?
• I'm voluntarily restarting a Genistein 125mg supplement with Gleevec.  When I was taking it between Oct 13 - Jan 14, my PCR "fluctuated" down by 0.5 log.  Perhaps it has some benefit.  It doesn't appear to hurt though.
• As some of you might remember, I lost a quick 30 pounds over the first 5 months of my journey - primarily due to anxiety from the CML diagnosis.  I was terrified that I was going to fade away to certain death, but my weight settled in and now I'm just a really thin guy (6'1", 148lb), but for all accounts, I appear to be healthy.  One upside to being lightweight is that my road biking has reached an all-time high.  I am planning to complete a couple of century races this year, as well as a 24-hour biking event to raise funds for cancer research.  What better way to put my second lease on life to good use?  I used to think that rigorous exercise was making a positive impact on my treatment response in some strange way - I now see that it doesn't, but it's great for staying healthy and keeping my mind calm.
• I now have to wrangle with insurance and the specialty pharmacy every 30 days to make sure I won't miss a dose - because they clearly don't care.  The whole thing is just completely screwed up this year with the AFA regs kicking in.  I miss the simple $60 per 90-day order that I used to be able to make on the phone in about 30 seconds - that was in 2011 and 2012.  Unfortunately for me, I probably won't be able to pursue discontinution (given my treatment response is not deep enough), so I'm going to have to fight this battle literally until the day I die.  But hey, it beats the alternative - and I'm sure I'm not the only one dealing with this.

Questions:

• Anyone else been on Gleevec for a while (at least 3 - 5 years) and continue to hover near MMR?  Just knowing if there are others out there who are living well with continued CCyR would give me a little bit of peace of mind.
• Anyone on combo-therapy trials with Gleevec right now?  I'd be curious to hear more about this and how it's going.

Thanks everyone!

Dan

[Trey]

You don't seem far from average.  Most people who post their results here celebrate great  results or bemoan poorer ones.  The average people simply suffer in silent desperation.  Well, at least Tedsey does.  Well, she really isn't very quiet, either.  Anyhoo, celebrate averageness.  It usually works just as well as a fast response.

[chriskuo]

What is AFA?

[jmoorhou]

Just wondering if anyone has experienced the "gleevec cough".  I've been on for almost two months now and get a uncontrollable cough at night.

[Susan61]

Hi:  I have been on Gleevec for a long time, but I do remember having a cough when I first started Gleevec.  I also developed very bad GERD, and had to go on Nexium when I started Gleevec.  I am still on the Nexium to this day, but the cough went away.

    Also, with allergy season maybe you just have allergies and its not necessarily from the Gleevec. Ask your doctor if it continues see a doctor.

[Susan61]

I have only heard of AFA as Alternative Fee Agreement if that helps.

[Rissa]

I've been on gleevec for 3 years and my numbers are comparable to yours.  It's frustrating not getting a flat zero, and my next PCR will probably be up because I was without my gleevec for 4 days last week.  We switched insurance from Blue Cross to United and they needed a pre-authorization form before they would fill my prescription and the lady at my oncologists office who does that dragged her feet getting it done.  I spent so much time on the phone with her, United, and CVS "specialty" pharmacy that I was a basket case!  Just one hiccup after another.  Oh well, I'm getting my blood drawn tomorrow.  We'll see how much damage was done, probably none, but I'm still anxious about it.

[LivingWellWithCML]

AFA = Affordable Care Act

[LivingWellWithCML]

I know the feeling, @Rissa - I can't believe how painful it has been to make sure I receive my 30 day refills on time.  The frustrating calls with the specialty pharmacy and insurance are driving me insane.  As if we don't have enough to be anxious about.  Even this small upward fluctuation in PCR continues to make me a little bit nervous - but I have to keep telling myself that a stable MMR at 3 years means that there's a good chance it will continue for quite a while (assuming we don't have a long lapse in dosage).  BTW, I wouldn't characterize 4 days as a long lapse unless it happens regularly.

Are you also on 400mg?  Are you taking anything to try and complement Gleevec (like me taking Genistein)?  And you're in good health otherwise?

[Rissa]

I guess 4 days is not such a big deal, but after 3 years of taking my pill every single day, and then having the pharmacy and the doctor's office and the insurance company being so indifferent about it, it just really upset me.  I'm on 400mg.  I used to take turmeric.  Stopped taking it because I thought it was making my heartburn worse, but now I don't think it was.  My heartburn is just as bad as it ever was.  I have noticed that my hands and feet have been cramping and hurting a lot more recently and I'm wondering if it's the lack of turmeric.  I read that it helps with inflammation, so I think I'll start taking it again to see if there's a difference.  Otherwise in decent health, not in shape though.  I don't know what to believe anymore.  Now they're saying that granulated sugar is poison!  Do I give up my ice cream????  Ugh.....

[LivingWellWithCML]

Don't give up ice cream, @Rissa!  We're still alive and kicking ... thanks to Gleevec.  So you have to enjoy the simple pleasures in life.

For inflammation (and potential benefits for inducing cell death in CML cells), some folks on the board take Circumin, which is an extract from Turmeric.  The thinking, however, is that a large daily dose is required for therapeutic benefit (8 grams/daily of a high bioavailability brand).  I love Indian food ... too bad I can't eat enough Indian dishes to get the full 8 grams ..........