10 replies to this topic

[Gail's]

I had surgery early in September. To get ready I went off sprycel 50 mg on August 10. Monthly bcr abl testing since then. Although I'd only been at MMR for a year, my onc discussed a cessation attempt with one of the oncs in Druker's clinic. They felt like waiting two years was best, but no one thought it was too crazy to try it. So I've been off sprycel all this time.
Got my latest numbers.
August. 0.001
September. 0.006
October 0.088

No recommendation to restart sprycel yet. Am I right that I'm probably on my way back to sprycel?

[Buzzm1]

August. 0.001
September. 0.006
October 0.088

Am I right that I'm probably on my way back to sprycel?

Yes, it appears that your Nov. test will be well above MMR 0.1 ... 

Your BCR-ABL level is almost doubling week to week, so if you tested last week, you have probably already exceeded MMR.

Not to worry, once you restart Sprycel you will quickly regain your low-level http://community.lls...pcru/?p=196277 

[Trey]

I would restart now.  You have likely already lost MMR. 

[kat73]

Gail's - I ditto what has been said above, but please don't be discouraged.  You will get back where you were very soon and you'll be fine.  I know when this happened to me, it was a shock, even though expected.  Somehow I couldn't believe it would come back at all, let alone so fast.  After a happy time, you get kind of lulled, and the end comes rather abruptly.  Even if we don't need it, we sometimes get a reminder that yes, we do indeed have CML.  I'm sorry.  Another day.

[scuba]

I first tried stopping Sprycel a few years ago when I was borderline PCRU. I remained off drug for nine months and during that time my PCR slowly rose and dropped in a seesaw pattern. It never broke above MMR, but I decided to go back on my 20 mg Sprycel to see how long it would take to get back to borderline PCRU. It took two months. 

 

I am PCRU now - and will likely stop Sprycel again and test cessation. But I would dread the monthly PCR to test for relapse. Probably the only reason outside of cost I don't mind taking the drug every night.

[Gail's]

I've been cautiously optimistic but deep down felt like I was going to need to restart. The early attempt at cessation after only 1 year of deep response made me feel that I was pushing it too hard, too soo for it to succeed. But it has been lovely to be off, have more energy and with it, a much happier me back. Funny, I never did lose the muscle and bone pain completely but it has been much improved.

In the midst of all this, I'm starting Medicare in December so am thinking I'll wait to restart drugs until I hit January 1. Trying to avoid the killer payment in December for 2017 followed by another killer payment in January for 2018.

[Buzzm1]

Gail, it wouldn't be wise of you to wait until January to restart your TKI.

 

That's almost 3 months away and as I mentioned your BCR-ABL level is almost doubling week to week.

 

That being said, consider this: come January, with you having signed up for Kaiser Senior Advantage, and Kaiser having designated generic Imatinib as a Tier 2 drug, it is available to you, at a cost of $18/mo. (varies by state/county).  Admittedly, Sprycel has a slightly higher efficacy than Imatinib, but only slightly. Switching back to a low dose of Imatinib, i.e. 200mg, will attain essentially the same BCR-ABL response, while  saving you a significant amount of money. and in all likelihood you won't experience the side-effects that you did with the 400mg, which, if I recall correctly was the main reason you switched to Sprycel in the first place.

 

How much will it cost you out of pocket to get your TKI for the remainder of Oct, and the months of November and December?

 

BTW, what is the current cost of 30 days of Sprycel 50mg?  thanks in advance. 

[Buzzm1]

If you stay on Sprycel with Kaiser, Senior Advantage in 2018 you will pay:

 

33% of the first $3,750 = $1,237.50
35% of the next $4,426.47 = $1,549.26 (coverage gap includes 50% manufacturers discount credit)

 

plus $12 per month for months 2-12

 

$1,237.50 + 1,549.26 + $132 = $2,918.76 total for 2018

 

check me on the calculations

 

Gail, since the cost of Sprycel 50mg is less than the total of the first two amounts ($3,750 and $4.426.47) you won't get out of the coverage gap in the first month. You will pay the remainder in month two plus the $12 Catastrophic.

 

Months 3-12 will only be the $12 Catastrophic.  

[Gail's]

Buzz, checked with both Kaiser and a Medicare specialist. I'm hit with the same costs as if I were on Medicare part d. Not sure why the senior advantage plan here in the northwest is so much more for the premium and less coverage. I pay the out of pocket costs until in catastrophic phase which I've been told will be in about 3 months. Thereafter, the only break I get from Kaiser is that my copay will be $15 instead of 5% as it would be on Medicare. Bottom line is that sprycel will cost me about $7500 a year out of pocket.

Docs idea is for me to get the sprycel now for my current zero copay. Hoping she'll give me 100 mg tablets that I can break and make them last for November and December.

[Buzzm1]

Gail, glad to see that you are getting back on your TKI.

 

Have you received your Kaiser Evidence of Coverage 2018 booklet and your Medicare & You 2018 booklet?

[Gail's]

Haven't received any booklets yet. Just basing my info on one on one and phone visits. Just to make sure I understood, I took my adult son on my in person visit, he was shocked too at what we learned. I'll let everyone know when I see it in print.