33 replies to this topic

[crob20]

I have been on Gleevec 400 mg. daily for 7 years and PCRU for 6 years. In the last 8 months I have been feeling nauseated or "sour stomach" much of the time. Zofran helps. I've had the "sharts", like most others, always, but now I'm considering protection for that😥. I'd had changes in blood pressure meds so I thought it was that. I had more changes but the symptoms continued. Finally it came down to the Gleevec and we decided to switch to Sprycel. I stopped the G a week ago and felt better...until I started Sprycel last night. The GI symptoms were awful during the night and now I've got a headache, too. No zofran because of QTC issues with Sprycel.
Is this what Sprycel is like? I'm on 100 mg.
Trey, how did you get to decrease the G? My Oncologist doesn't support lower doses. It seems like the best choice, to me.
Thanks for the support, as always. Carol

[Buzzm1]

Carol, I'm on BP meds Metoprolol and Losartan ... had innumerable lengthy stomach bouts with Gleevec even though I was taking my Metoprolol at lunch and Gleevec with dinner.  Waiting up to 1 hour after eating, before taking Metoprolol or Gleevec helped ease the problem.  Metoprolol is probably even more notorious than Gleevec when it comes to stomach problems.  

 

PS. my Onc didn't support lower dosages either ... but did listen to my arguments and insistence at each juncture

[crob20]

Buzz,
Thanks for the insight.
It started with Losartin. Now I'm on Metoprolol. I thought since it continued it had to be the Gleevec. Lisinopril caused throat swelling anaphylaxis.
Thanks for the tips.
Carol

[Buzzm1]

Carol, you certainly have enough time at PCRU to warrant a dosage decrease, if not complete cessation.  

 

Gleevec 200mg, as Trey has done, would be a good first step.  

 

The odds of you losing PCRU should be very, very, low.

[kat73]

crob20 - The headaches in the first few days or weeks of Sprycel are very common, although I didn't have any.  But I didn't have the lower GI stuff on Gleevec, either.  My problems with Gleevec were a general malaise (like the flu but not), random bouts of nausea, edema especially facial and around the eyes, and depression.  I sometimes wonder if we could be sorted into "types" by our side effect profile, although I don't know what good it would do.  For instance, I'm awfully grateful I've never had a muscle or joint pain or cramp or anything like that, but tons and tons of us do.  Anyway, what I'm trying to say is, for what it's worth (because my "type" doesn't seem to match yours) I have had a good experience with Sprycel, so maybe hang in there awhile?  But I agree with Buzz - after all those years PCRU you could certainly argue for a trial of cessation (or at least go down to 200 Gleevec.)

[Trey]

Trey, how did you get to decrease the G? My Oncologist doesn't support lower doses. It seems like the best choice, to me.

 

Actually, I just did it on my own and told my Onc later.  My Onc was OK with that after the fact since I never lost PCRU.  This was 7 years ago when the propaganda was low dose promotes resistance, which I fought against.  But now, very few Oncs believe the "low dose" propaganda that was put forth initially.  It never made any sense. 

[hannibellemo]

crob20,

 

I really hated Sprycel at first. I never did get headaches, but that first night and for the next couple of months I had tremors at bedtime, never during the day (go figure) then I had such severe fatigue I really thought I was dying. I guess I had never experienced fatigue like that before and didn't know what it was for awhile. I also had several other minor side effects that while irritating weren't that awful.

 

My husband had knee replacement surgery about 4 months after I started Sprycel and I really wondered how I would be able to take care of him after he got home. Amazingly, at that point I started feeling better and the fatigue would only hit a couple times a week and shortly after it stopped completely.

 

About 2.5 years in I developed a pleural effusion. After it resolved I restarted Sprycel at 50mg. and that is what I have been on since. It has been almost 4 years. I reached PCRU last year and bounce in and out. I'm happy where I am. Give it a chance, many people had very differnet experiences from mine and liked Sprycel far more than they did Gleevec.

 

Good luck!

[crob20]

Thanks for the support. My week vacation from G was awesome. I started to feel more interest and energy. The nausea was better. So 1 day on Sprycel with being up all night with the nausea and sharts and a headache for good measure was discouraging.

I'm still taking it but thinking of Gleevec again. Is anyone studying lower doses?

Has anyone developed Granuloma Annulare? Dermatologist said it wasn't caused by Gleevec. This presents as purple or pink spots that are slightly raised. They can burn or itch. I had to have steroid injections and they eventually fade. This was on Gleevec.

Thanks for the support, again!

[mscl]

crob20,

I really hated Sprycel at first. I never did get headaches, but that first night and for the next couple of months I had tremors at bedtime, never during the day (go figure) then I had such severe fatigue I really thought I was dying. I guess I had never experienced fatigue like that before and didn't know what it was for awhile. I also had several other minor side effects that while irritating weren't that awful.

My husband had knee replacement surgery about 4 months after I started Sprycel and I really wondered how I would be able to take care of him after he got home. Amazingly, at that point I started feeling better and the fatigue would only hit a couple times a week and shortly after it stopped completely.

About 2.5 years in I developed a pleural effusion. After it resolved I restarted Sprycel at 50mg. and that is what I have been on since. It has been almost 4 years. I reached PCRU last year and bounce in and out. I'm happy where I am. Give it a chance, many people had very differnet experiences from mine and liked Sprycel far more than they did Gleevec.

Good luck!

[mscl]

Glad to hear 50 mg Sprycel will be an option for me. I was on 100 mg for almost 4 years. Developed PE as well. I've been on 50 for almost a month and not feeling any PE symptoms.

[crob20]

Buzz,
I've been reading the links you posted about the STIM studies, etc. it seems very encouraging to me. I am closing in on age 70,so I should be a great candidate to stop or reduce dose. 75% chance of maintaining remission sounds great to me.

I discussed with a PA at my Onc office. They seem pretty unaware of some of these studies but she agreed to research it and we will discuss. I stopped the Sprycel and donated it at MD office.

Now I'm going goofy on Metoprolol. Labile mood, crying, irritable. I NEVER cry. I'd like to give people a piece of my mind. Glad I don't have a real light saber. I think I could even take down Donald Trump in my current mood. Yikes.

Thanks for the support and information.

Carol

[Buzzm1]

Carol, thanks ... yes, advancing age does have its benefits, lol ... at least according to one Stop Study ... 

 

The ISAV (for Imatinib Suspension And Validation) study http://bit.ly/1jkQNQe

was conducted in five countries (including Canada) and used a new digital PCR test which is reportedly 100-fold more sensitive than conventional PCR testing (Mori and colleagues. ASH 2014; abstract 813).

The 112 people enrolled in the study were required to be in CMR for at least 18 months. The median time on imatinib (Gleevec) was 8-9 years, and the median duration of CMR was 26 months. In the first 16 months off treatment, 43.5% of people relapsed, typically within the first nine months.

All of those who relapsed were able to regain MMR or CMR with two months of re-starting treatment.

In this study, the amount of time on Gleevec didn't have an impact on the risk of relapse.

However, a person's age was inversely related to the risk of relapse. Relapses occurred in 90% of people aged 45 years or younger, compared to 37.5% in those aged 45-64, and 27.5% in those aged 65 years or older.

 

You and I are among the favored few ... 

 

PS. .. you didn't say whether you had resumed Gleevec, at a reduced dosage, or stopped altogether ... 

[gerry]

Carol, thanks ... yes, advancing age does have its benefits, lol ... at least according to one Stop Study ... 
 
The ISAV (for Imatinib Suspension And Validation) study http://bit.ly/1jkQNQe
was conducted in five countries (including Canada) and used a new digital PCR test which is reportedly 100-fold more sensitive than conventional PCR testing (Mori and colleagues. ASH 2014; abstract 813).
The 112 people enrolled in the study were required to be in CMR for at least 18 months. The median time on imatinib (Gleevec) was 8-9 years, and the median duration of CMR was 26 months. In the first 16 months off treatment, 43.5% of people relapsed, typically within the first nine months.
All of those who relapsed were able to regain MMR or CMR with two months of re-starting treatment.
In this study, the amount of time on Gleevec didn't have an impact on the risk of relapse.
However, a person's age was inversely related to the risk of relapse. Relapses occurred in 90% of people aged 45 years or younger, compared to 37.5% in those aged 45-64, and 27.5% in those aged 65 years or older.
 
You and I are among the favored few ... 
 
PS. .. you didn't say whether you had resumed Gleevec, at a reduced dosage, or stopped altogether ...

That would have to indicate that there is something else going on as to why younger people get CML. Or is it because the body's immune system hasn't had enough practice with the Philadelphia Chromosome.

[gerry]

Carol,
With doctor's consent I dropped my dosage of Gleevec following a year of PCRU.
Then got his agreement to stop taking Gleevec altogether after another year of PCRU. I've now been off Gleevec for 29 months now, still getting negatives on my PCR tests.

[crob20]

Yay! My Doctor agreed to 300 mg. He has some concerns about the studies. I'll discuss with him next week. I don't have any Gleevec right now so I can't take it until they send it.

I will be able to take zofran if I need to while on G. I can take pantoprazole if I need to.
I probably could be off the G. My lab results meet criteria. I'm 70. I've certainly demonstrated perseverance!
Since I'm stable we could stop torturing me.

Thanks for the support and information to help me make an informed argument and decision.

[gerry]

Great news. :-) You'll notice a difference between 400mg and 300mg. I had to switch to 3 X 100mg tablets.

[Buzzm1]

Carol, congratulations; reducing your Gleevec dosage to 300mg is a step in the right direction.  

[crob20]

This will shock you: I called the Cigna specialty pharmacy to get my Gleevec 100mg #90 for 1 month. They told me the generic would be $700 for 1 month. If I request Prescription Brand Only it will be $150. Yikes! That's what I paid for 3 months med before.
Carol

[Antilogical]

Both Novartis (Gleevec) & Sun Pharma (generic imatinib) have a $10 co-pay program.  The Novartis plan is ongoing, but the Sun plan is for 6 months only.  My specialty pharmacy (Accredo) was kind enough to get me signed up on the spot for the Novartis plan, so now I pay $10 instead of $200 per month.  See if Cigna will do the same for you.

[Buzzm1]

Antilogical, Carol, being 70, or almost 70, is likely on Medicare, and if so, excluded from the Novartis and Sun co-pay programs. 

 

Carol, are you on Medicare, and is Cigna your Medicare supplemental (drug) plan?  The change in Gleevec pricing, when going from 400mg/day to 300mg/day, doesn't make any sense .. except for the fact that your last Gleevec Rx 3-month refill (for #90 400mg) was likely done last year, and this is a new Medicare year.  When you first filled your Gleevec Rx 3-month refill (for #90 400mg) in 2015 what was the price?  I think you may need to call Cigna.

 

Gleevec 100mg tablets are approx. $100 each before insurance (90 X 100mg = approx. $9,000)

Gleevec 400mg tablets are approx. $363 each before insurance (30 X 400mg = approx. $10,900)

 

to the best of my knowledge, generic Gleevec (imatinib Mesylate) is only discounted 6% from the brand name

 

How much was your Sprycel Rx that you filled this year?

 

PS. Antilogical thanks for adding your history/status to your signature; it really helps.