33 replies to this topic

[RJF]

I know I might be setting up myself to a lot of criticism here, but I have been struggling with this and need to see other's thoughts.

I was diagnosed with CML in April of 2009, and caught it very early.  After 6 months on Gleevec, I was PCRU and have maintained this ever since.  My current insurance through work is killing me with monthly costs, and what they will not cover.  My HR department noted this and suggested that I change to a better coverage plan.  Under this new plan, I will need to pay $5K deductible at the beginning of the year (out of pocket) and nothing but bi-weekly out of paycheck stuff the rest of the year.  (What I will save bi-weekly will actually pay the $5K, so it makes sense)  Unfortunately, the open enrollment for the new insurance does not coincide with the calendar year, and I will need to pay a $5K deductible in September, and then again in January.  I am hoping to avoid this.  I have three months of Gleevec which will take me through November.  If I get another prescription filled between now and January 2012, I will get hit with the $5K deductible (as this includes medication and Gleevec costs $6K/mo though my pharmacy).

My question is this:  Can I take a month off?

I explained the situation to my oncologist, but she would not endorse the idea (but I believe this was more CYA).  I do not believe I would qualify for Novartis financial aid.  Any thoughts?   Regardless of the financial side of things, I could really use a month away from Gleevec.

RJF

[Marnie]

Hi, RJF

I don't have any advice about skipping your meds (I'd be afraid to, but I haven't reached PCRU yet). . .but I had to comment because I'm in the same insurance nightmare.  $4000 out of pocket in September, and then the same in January.  Would have been $5000 each time, except that I swtiched insurance companies, which means switching docs, etc.  Also, I'm lucky in that I'll be able to go onto my husband's plan in January, which is a more typical plan, rather than the high-deductible.  So I'll be able to avoid the hit in January, though it will mean going back to co-pays and etc.

Good luck with your decision.  I guess that there are some clinical trials out there where PCRU people are going off meds and being monitored closely.  I'd just be pretty nervous about doing it without my doctor's approval and monitoring.  When I mentioned it to my onc, as I debated the same issues, his response was that it would be a VERY BAD IDEA, and he would not recommend it.

Marnie

[Happycat]

RJF,

Hard question, but if it were me, I'd suck it up and pay the extra $5K.  The potential savings would not be worth the risk of disease progression, loss of response, and the chance that I would have to leave my beautiful daughters.  I'm not a gambler, and that's what I feel this would be for me.

My two cents,

Traci

[lala]

Yikes.........what a decision........it is tough to keep spending five thousand dollars!  I have to pay three thousand in January and that makes me cry!!!!!  Will be interested to read the other comments.......Lala

[Taylor]

Wow, what a tough call.

cometbro in this recent thread (http://cmlc.ml...huge-pcr-increase-in-2-months) went off of Tasigna for three weeks due to some problems and saw a 2 log increase in PCR (I don't believe he was PCRU though). I haven't seen if he's been retested since he's restarted TKIs but it seems a scary situation.

Do you think there would be any recourse with Novartis Patient Assistance, to see if they would cover you for one month?  It might be worth a shot.  (I am currently on their program for Tasigna because I didn't have insurance when I was diagnosed, and they're pretty nice).

I too would be wary because it probably takes longer to get back to PCRU than it does to get off!

Taylor

[CallMeLucky]

It is obviously risky.  But I will say this, if it were me, I would go to half dosage for 60 days rather than nothing for 30 days.  Others may disagree with that, but considering you seem to respond well to Gleevec it is conceivable that 200 mg per day may be enough to at the very least keep things under control.  There are some who would speculate this could lead to resistance, but I don't think it would be any riskier than stopping completely, in fact I thinking the full 30 day break is riskier.  Obviously this is only my unscientific opinion.

Best of luck with your tough decision.....

[CMLSurvivor]

I am definately not an advocate for skipping medication. But I can understand the expense issue. If you are talking about skipping a whole month only because you are waiting for your new insurance to kick in, I wonder if you could do something like strech the medication you have, so you are not skipping a whole month at once.  My doctor only lets people skip a week at a time.  You have a three month supply currently, so it you go three weeks then skip a week for 4 months that would cover you. I would think you could ask your doctor if that would work better for you. Just a thought. Couldn't hurt to ask.

[LivingWellWithCML]

I totally agree with the others. If I were in your shoes, I'd figure out a way to pay the extra $5K to cover December. Wish there was something we could do about the cost component!  This is crippling stuff.  If insurance fails me, I'm not sure how I'm going to finish raising my three young kids, keep my house, etc.  But hey, at least I'll be alive and eating cream of wheat and ramen noodles like I had to when I was broke in college.  Thanks a lot, CML!  Anyway.....

Playing devil's advocate (and note that I'm not any type of medical professional and am not endorsing anything here), you'd be inside the edge of the entry parameters that were the basis for the STop IMatinib (STIM) trial ... which I believe was > 2 years CMR -- which is where you'd be in the Oct/Nov timeframe.  Those patients stopped Gleevec for much longer than a month ... and of the ones that started showing relapse at the PCR level (typically within 6 months), they resumed Gleevec and kept a deep response.  Some even returned to CMR within the scope of the trial.

Oh, the pros and cons that factor into a tough decision....

[Trey]

Don't take a month off.  If you must do something, I would suggest either 200mg per day or 400mg every other day.

[Stevea]

I was going to say the same thing as Trey, I would just spread it out a little bit.

[RJF]

Thanks to all for the feedback.

I have initiated discussions with Novartis Patient Assistance.  The main program is more for people who need regular aid, so my situation is unique.  They passed me through to a few different departments and have told me they will call back with more information.  We'll see.  I will let everyone know what happens.

RJF

[Marnie]

Good luck with Novartis.  I tried the same thing with Bristol-Myer-Squibb, since my situation is similar to yours.  As you said, they have assistance programs for people who need long-term financial assistance, but had nothing for someone in the situation that you and I find ourselves in.  I gave up and will bite the bullet.  Next week. . .see you later $4000. . .easy come, easy go. . .actually, not so easy come.

Marnie

[PhilB]

As others have said, If I could afford it I'd shell out the money to stay on the dosage.  If I couldn't, then I'd try to spread the 3 months' worth of drugs over the four months rather than have a month off.

This is only my personal opinion, and I have no medical training whatsoever, but if I did have to try and stretch 3 months of pills over 4 months I'd probably alternate a full pill one day and half a pill the next -  and on my half pill days I'd drink a large glass of grapefruit juice before the Gleevec.

Phil

[Trey]

I like the grapefruit juice suggestion.  It keeps the drug in the body longer, so acts like a higher dosage.

[RJF]

I am confused.  I just went to the Gleevec.com website and they specifcally said that it should NOT be taken with grapefruit juice.  I assume this is for the same reason that it is being recommended here?  Because it stays in your system longer?

RJF

[Trey]

Right.  Drug makers (their lawyers) do not want people to extend the circulation life of their drugs in the blood since they view it as similar to taking a higher dosage.  Grapefruit juice slows down the removal of the drugs from the blood by the liver.  But if you want to keep the drug in the body longer, this is a way to do that.

[gunner]

I would start splitting pills. Full pill Monday, Wednesday, Friday, half pills Tuesday, Thursday, Saturday, Sunday.

When I was first diagnosed, there was no rush to get me started on Gleevec. It was a full month from the initial diagnosis to the Onc visit. If it is not that critical to get started, I can't believe it would be that critical to lighten up a bit to stretch the bottle. Sort of like watering the whiskey!

There is some discussion about reduced dosage for long term maintenance. My onc even offered that I could stop the G and just monitor closely. In December (3rd cancerversory) I am going to propose going to 2 x 200 or 4 x 100 per day to try to manage the side effects better. The other possibility is to go to a reduced amount.

I am sick and tired of feeling sick and tired all the time.

[PhilB]

Hi Trey,

I thought I'd read recently that the inhibition of CYP450 by grapefruit juice was more significant in the gut before the drug gets to the bloddstream than in the liver to clear it?

[Susan61]

Hi:  Just reading all the responses and all the mixed views. This is a hard decision, and I am terrble with regard to insurance.  I have no deductibles on my medications, only on medical care.  We just have our co-pays on our medications through a mail order pharmacy for 90 day supply at a time.  The only thing we have ever had to do was when my husband lost his job, we had to pick up the COBRA plan until he could get a new job so that we would have no lapse in coverage in general because we did not want to be refused due to pre-existing condition for me.

It cost us $850.00 a month for 9 months.  Then it went right into his new insurance on his new job.

I hope whatever you decide to do will work for you.

[Happycat]

Gunner's post makes me wonder if you couldn't request your doc to write a script for 4 x 100 mg Gleevec, then start taking just 3 x 100 mg each day to stretch it out so that by the end of the year, you'll get that extra month.  300 mg is considered the minimum effective dose, right?   She might go for that.

Traci