33 replies to this topic

[Badger]

I was on Gleevec first my first 18 months until my PCRs went south, which I'm sure was caused by beibg on drugs for acide reflux. However, at the time there were no warnings against taking these with Gleevec. Then, I was on Sprycel for six miserable months, until I switched to Tasigna. Initially, I had some issues with my lipase levels and atrial fibrillation, but none after the first few months of taking it. I was on a half dose for the first six months because my PCRs were doing well. At my last appointment I was put on a full dose because my numbers were trending in the wrong direction.

[scuba]

Hey Tedsey .... " It would be great to pay less for Sprycel. "

Lowering your Sprycel dose won't lower your Insurance payments! I found that out. The difference between 100mg Sprycel and 20mg Sprycel was about $500. So a $7000 100mg monthly bill was reduced to a $6500 monthly bill.

It seems the cost is not based on "per miligram". We're not paying for the product we're paying for the intellectual property that produced it. Regardless of dose - they want a lot of money to cover their research and development costs and profit for next generation of drugs. Whether you take one miligram or 100, it's going to cost a bunch.

Just an fyi.

p.s. I asked Dr. Cortes to increase my dose from 20 to at least 40 so I can try for a deeper response and maybe PCRU. He said no. I have to wait another 3 months. I am beginning to envy folks whose doctors won't let them reduce dose below the "standard" and my doctor won't let me increase my dose to the standard. Speaks to the "art" nature of our treatment. Good to see you're doing fine.

[Tedsey]

Scub,

Well, I am more miserable with the mouth sores than the cost.  My blood counts are still in the doghouse (but not as bad as they were--no shots for now).  And I am starting to feel a bit beat up.  Not sure if that is the drug (I also fear for my internal organs).  Not much has changed since dx.  Just 3 years older...  I guess that is a good thing.  Wish I had the awesome response you have had.  You once wrote to me that you thought our CML was similar.  Clearly, you have the more curable one!  Still takin' my 8g of curcumin.

All the best to you.  Glad to hear you are still doing so well.  And BTW, .0001 and you are disappointed!!!!!  Sheesh!  But I get it.

[hannibellemo]

Hi, scuba,

My costs went from $8500 per month at 100mg to $4100 at 50mg. However, there was no price break until 50mg. Your insurance company is ripping you off!

Just sayin...

Pat

[Susan61]

I just read your remark about not doing good due to taking something for the acid reflux.  My Gleevec was giving me such bad erosion in the beginning, and I had no idea that was what the cause was.  I was put on Nexium, and by the time they did my Endoscopy they said my erosion was healing up good.  I have been on Gleevec since 2000, and also on Nexium.  I take it everyday, and have had no GERD problems.  I also have not had any problems regarding my PCR due to being on the Nexium.

I have read posts from people saying not to take the Nexium etc. at the same time as the TKI drug.  I have been taking both at the same time all these years.  I bet you could have stayed on the drug for your acid reflux with the Gleevec, and did okay.  We are all different in how we absorb these drugs.  I hope you continue to do well.

I am supposed to go for a Endoscopy for stomach issues, but they are looking for a hiatal hernia.  I will post when I do the test and get results.

[Susan61]

Hi Billie:  Glad your home.  I swear you heal up faster once you get out of a hospital.  I hope whatever TKI you take works better for you.  Just think how fortunate that we have more than one to try.  Keep us updated on how your doing.

God Bless You

Susan

[Susan61]

Hi Scuba:  I am devastated at the prices for the TKI drugs.  Are all of you paying this full price?  I am having a hard time paying $112.00 for a 90 day supply of my Gleevec.  I dread when I have to pick-up Medicare, which will be when my husband Gary stops working.  Right now I am under his insurance, and even with what we pay for co-pays and office visits etc.  It wipes out our income something terrible.

You wonder where is this all going??  Hope all is going well with you.

Susan

[pammartin]

Hi Billie,

Glad you are home and feeling much better.  I read down through the threads to see if you were home from the hospital.  What do you think they are going to put you on now, or haven't you had that conversation yet with oncologist?

Continue to feel better and take care of yourself.  Let me know about Ron when you have a chance.

Pam

[pammartin]

Susan,

Nice to hear from you, I have been horrid with communication lately.  Please let us know when you hear about your tests.

Take care

Pam

[Susan61]

Hi Pam:  Been bad myself with keeping up with things.  I have not had any of those stomach attacks in over 3 weeks, and keep putting off the testing. I know I have to go, just to see what is going on.  Been so busy with other things lately.  Glad to see you posting. Hope all is well with you.

Susan

[hannibellemo]

Hi, Billie,

Don't be so impatient! It probably took me 8 of the 9-10 weeks I was off Sprycel to return to normal. I remember walking the halls at the office just to get some exercise and felt like I was 90, the shortness of breath was so bad.

Don't expect a real quick return to normalcy. Sorry for the bad news...

Take care,

Pat

[hannibellemo]

Billie,

I totally understand where you are coming from! I am so thrilled that, so far, Sprycel at a lower dose is working for me. Because of the pleurisy I had along with the pleural effusion I found the real relief didn't come until I started a second, stronger, steroid pack. Someone else on here said it first, but steroids do, temporarily at least, take care of what ails you!

I crashed pretty hard though for one day even though I was tapered off pretty slowly.

You'll feel better soon!

Pat