10 replies to this topic

[cedespres]

Hello everyone,

I have a problem. My onc really wanted me to be on 100mg sprycel but settled for 70 mg as my numbers have fallen to 0.014. My cardiologist diagnosed CHF 6 months ago and it is getting worse. She thinks it is the sprycel that is causing this. My cardiologist said I need to decide how to proceed. She has increased my torsemide  to 80mg per day and my potassium cit to 4 10meq pills per day trying to get rid of so much fluid.

I have had cardiac issues for close to 20 years that include CAD (4x cabg) in 2012, CVA in 2010, valve problem and aortic aneurism ( I know spelling). I also have diabetes that I am struggling to keep up with. Sleep apnea is another problem. I am currently legally blind due to retina bleeding caused by a reaction from gleevec at about  6 month after dx in July 14.

I am currently  having some trouble coming up with the $2,400.00 in co-pay for the sprycel and would like to cut them in half and therefor use only 15 pills per month. When I suggested this to my onc he said he would rather I take 1 70mg every other day. Does this make sense rather than keep a constant 35mg going all the time.

I feel like I am being asked to choose either dying from heart failure or CML. Any advise would be greatly appreciated.

Ed

[Melanie]

Ed,

 

Sorry, I don't have any real advice for you and hopefully someone with far more knowledge will see this and be able to offer some help. I just want to let you know that I emphasize with you and will be keeping you in my prayers and thoughts. Sounds like you have such a difficult path and my heart goes out to you. 

On the Sprycel co-pay, have you checked out all the assistant programs available for help? I know there are many out there and maybe someone on here, who is taking Sprycel will have some info for you to help with that big co-pay. 

You didn't say if you were MMR or not, so that may play a part on advice on drug dosage.

Just want to send you some words of encouragement, hang in there!

Melanie

[Gail's]

My opinion is you should take a drug break from sprycel. We have a very slow growing cancer. You won't die from cml in a couple of weeks. Then you'll know for sure if the sprycel is causing your fluid retention. That's one of its major side effects so I bet you'll do much better off it. Next step would be discussion with onc about best med option if sprycel is to blame for your fluid problem.

[r06ue1]

I thought Sprycel had a zero dollar co-pay card?  Do you have private insurance?  if so, you can take advantage of it, if you are on medicare/medicaid then I don't believe it works.

[Trey]

Overall I don't think Sprycel is the right drug for you with CHF and other issues, certainly not 70mg.  But since Gleevec caused eye issues, that is also not advisable.  If your heart QT number is normal you could consider Tasigna.  It does not appear to have the same heart issues as Sprycel except for the QT issue so it could be an option.  You could also consider low dose Bosulif.  However, if you continue with Sprycel you should go to a low dosage, maybe down to 20-30mg daily.  You can split them if needed but you may need a pill cutter.  You need to find some drug dosage which keeps the CML under some level of control while not causing other harm.  Your condition does not allow for full dosage, and you never should have been on even 70mg Sprycel.  So either low dose Sprycel or better yet switch drugs.

[scuba]

Ed,

 

My Sprycel dose is 20mg and my PCR is below 0.01%. At this dose P.E. problems are greatly reduced to non-existent. It's the higher doses that present P.E. problems for many (M.D. Anderson, pers. comm.). There is a very good chance you can maintain your excellent PCR levels or even continue to drop while taking a reduces 20mg Sprycel dose. It is a potent drug that works very well - when it works. High dose (i.e. 70-100mg) for many patients is so unnecessary and it is sad high dose sprycel is prescribed for patients who are CCyr and below. 

 

Also - taking a higher dose every other day is fine. Sprycel works very fast to attack CML cells. It's half life in the blood stream is only 5 hours, which means most of the time you have no "drug" working in your body anyway. The key is response.

 

It is up to each of us to "discover" what works - at what dose and to customize our treatments. Our doctors will not do this for us. They have liability insurance to pay and no side effects to feel (long term heart and other toxic damage or immediate P.E. issues). Doctors, if they are good, will follow the NCCN guidelines which tend to be a one size fits all approach, although there are signs that may be changing. YOU have to be your own best advocate by learning, thinking and applying. A good doctor will manage with you and monitor so you can adjust as needed.

 

(personal note: I am thinking about dropping my own 20mg dose further to 10mg ... 20 mg. every other day). I want to keep dropping dose until it doesn't work...maybe 20mg once a week! I'll know next month).

[mlk210]

Cede,

 

I don't know enough to give you advice like everyone else, but here's the link to the Sprycel One card. I contacted them last year when my co-pay was rumored to go up. I was told it was $25 a month, but looking at the site, it looks like some are eligible for no co-pay. Just wanted you to have it in case you decide to stay on Sprycel. I haven't used it yet because  I haven't needed to, but I'm in a local CML group and a lady there uses it every month. Even picks up her prescription at a local pharmacy.

 

https://www.sprycel....on_text_tc11765

[cedespres]

Hello Everyone,

     Thank you so much for all of your support and suggestions. I checked the sprycel co-pay help, but because I am on medicare I do not qualify. They only help with private insurance. My pharmacy has offered to send 15 pills at a time so I only have to come up with $1,200.00 at a time.

     My onc skipped over tasigna because of my diabetes but I will talk to him about this option the next time I see him. I would like to stay on sprycel because my numbers are so good but at a lower dose. The thing I was wondering about was if I have to take a drug break or just lowering dose while staying on the therapy would help fix my CHF/PE problem. The current solution by my cardiologist (high dose torsemide) has caused my kidney function test to come back at 1.6 and this is a concern of hers. The high dose torsemide is also the reason for the high dose potassium script.

     I read this forum daily but do not post much because I feel like there are so many people like all of you who know so much more about CML that I would have little to contribute. I do send my thoughts and prayers to everyone who is fighting CML and offer my support in any way I can.

Ed

[r06ue1]

I don't understand why these companies do not help medicare/medicaid patients, they need the help as much if not more than those of us who work full time and have private insurance.

[cedespres]

I don't understand why these companies do not help medicare/medicaid patients, they need the help as much if not more than those of us who work full time and have private insurance.

I am not sure but I believe it has something with a former congressman named Billy Tosin who worked on the medicare drug coverage and then retired and got a multi-million dollar job for the drug companies. He was on 60 min a few years ago and when questioned said he felt there was no conflict of interest by what he had done.

[Buzzm1]

Pricing https://www.rxpricequotes.com

 

in regards to cutting/splitting tablets http://bit.ly/1oHD09v

 

Sprycel 30 days 

20mg approx. $3,400

50mg, 70mg approx. $6,775

80mg, 100mg, 140mg approx. $12,200

 

Tasigna 30 days (120 tablets)

150mg, 200mg approx. $12,200

 

Bosulif 30 days

100mg approx. $3,250

500mg approx. $13,000