10 replies to this topic

[Taylor]

Hi everyone,

So, looks like Sprycel comes tomorrow. I think I'll take my last Tasigna tomorrow, then wait until Saturday (to give my system some flush + not compound wisdom teeth pain). I know there is a ton of info on this board, but it's almost overwhelming to look through. I was hoping I could just ask a few here.

1) I'll go back to see my onc in three months. Do I need to do any special EKG testing or liver testing before then?

2) Related, I was always so worried about Tasigna's QT/heart problems, even though my QT was fine (even if I did get some heart side effects). It looks like Sprycel isn't as bothersome in the regard to the heart, is that right?

3) Sprycel has a half life of something like 3-5 hours. Does that mean side effects are potentially less than 600mg Tasigna daily, or is Sprycel just that much more potent?

4) Any way to predict Sprycel side effects based on those that I had from Tasigna?

5) Related, I responded well to Tasigna (PCRU in 7 mos), and eventually adapted to most of the side effects. Is that any indicator of how I'll do with Sprycel, in regards to adapting?

I think that's all the questions I have now...I'm sure I'll have some freak out moments before I take the first pill and will probably have loads of questions. I figure I'll take mine at dinner or before bed so that the hardest impact of fresh drugs into my system will happen while I'm asleep. I gotta say, I am excited to eliminate that fasting window that Tasigna had...

Thank you all

[Marnie]

Hi, Taylor. . .I'll respond in more depth later. 

If possible, I'd recommend starting out Sprycel at half dose, though it may be too late to discuss that with your onc, and get appropriate pills. 

When I started Sprycel, I took a 5 day drug break from Gleevec.  Then I did half dose (50 mg) for a week.  I had a low grade headache for about a week, though I've heard of some people having serious whoppers of a headache for 2 weeks.  Other than the headache, I had no side effects for about 2.5 years. 

For the past year, I've had pretty awful rash on my neck, scalp, and ears.  And I just had 2 pleural effusions, the first was bad. . .1.6 liters of fluid.  The second was because the first didn't quite resolve before restarting meds.  I'm now on 50 mg Sprycel, and the rash has very nearly gone away.

Best of luck.  Sprycel has worked great for me. . I feel a lot better than when I was on Gleevec, and I finally reached PCRU while on Sprycel. 

marnie

[chriskuo]

I found Sprycel generally much more tolerable than Tasigna.  As mentioned, the most common serious side effect of Sprycel is pleural effusion.  I was diagnosed with PE after about 9 months on Sprycel 100mg.

After having worse problems with Tasigna, I went back to Sprycel at 50mg and am taking a mild diruetic.  After 8 months at 50mg, so far so good.

[hannibellemo]

Hi, Taylor,

It is recommended that you get an EKG prior to starting Sprycel. Does your onc not do a complete metabolic panel everytime he does a CBC? Those should have liver function tests on them; look for ALT and AST, also Total Protein, Albumin (total and direct), and Alkaline Phosphatase. If he/she does not do that every time I would ask for every other or every three months, etc. I developed liver toxicity on Gleevec at 9 months.

I did not like my first several months on Sprycel, but I did adjust; hopefully you will fare better. I do believe they are finding that many more people than originally showed in the studies are having PEs, many of us after 2+ years. Many of us are doing fine on a reduced dose. As Trey would say, "your milage may vary".

Side effects are a crap shoot for all of us. Knowing that I have to take this drug for a very long time I just pushed on through - it worked for me, we all have our own tolerances.

Good luck!

Pat

[Taylor]

Thanks for the replies everyone. They have already put me at ease. I received my bottle today, ready to start on Saturday. Today was my last dose of Tasigna.

Pat, yep, my onc does a metabolic panel. I just didn't know if it could wait three months. I've got a few baseline EKGs too, and I'll be seeing my cardio next month so I can let them know about the new meds--particularly the potential for PAH so that they can monitor it.

[Ludwigh]

Unfortunately there is no way to predict the side effect profile for each individual. I have been on Sprycel for 4 years and I can say I fell pretty good most of the time. I remember the brutal headache at first. Burning throbing pain. I took ibuprofen and it lessened significantly. Lasted two days. Have to watch what I eat because I do get acid reflux acationally and unfortunatley you are limited in taking ant-acids because they can interfer with the drug. I do get bone pain episodes maybe every 6 months, which do make an impact.  Out and out I fell pretty good, and the only thing that comes to mind is remembering to take the drug. I continue to have a great response (CMR) and considering I was borderline accelerated I can say life is good. Still get that apprehension that comes every 4 months when I go into the local oncology dept and wait for them to print off my most recent PCR BCR/ABL.

Sprycel has been a great drug for me and I hope it will be for you.  Gleevac never did agree with me all that well.

Terry in Colorado

[0vercast]

I have heard it's not common for docs to prescribe half-doses of Sprycel at first. I have been on it for a few months after I plateaued on Gleevec at about 2.5% PCR (IS). Sprcyel gave me an almost unspeakable headache for two solid weeks, but after that, it's been great. I wish there was a way around that initial headache, but I'm not so sure. This is the actually first time in two year that I feel normal. Gleevec was not kind to me. Furthermore, Sprycel gave me a nice boost into MMR after just a couple bottles. Good luck!

[0vercast]

In hindsight, I really wish I would have tried the half-dose of Sprycel for the first few weeks. It really kicked me in the head. Two weeks that I'll not soon forget!

I have a lot of faith in my Onc, but I am his first Sprycel patient, so I'm a bit of a case study for him. He has had uncanny luck with Gleevec, and that's what his other 35+ patients take. They are ALL MMR or PCRU. Every single one. I'm the ONLY one that failed with Gleevec. I told him to warm future patients about the Sprycel headache and consider half doses.

[Taylor]

Hi everyone,

Thanks for all the replies. I took my first Sprycel pill tonight (my wisdom teeth aren't in pain so I figured I was ready to get slammed in the head by Sprycel).

Anyway, took it at about 7PM after dinner and...and...and...well, I didn't die on the spot. I know it will realistically take a day or two to really feel anything.

Got a few more questions though:

1) Half-life is only 3-5 hours, and daily dose is 100mg (as opposed to 600 for Tasigna). Does Sprycel bind that much better or is it really intended to be a smaller dose (I believe I saw Trey say in another post as Sprycel being a "pulse therapy" in a sense).

2) Also saw that Sprycel inhibits everything Tasigna does + SRC. So, the reason I switched was possible/probably cardiotoxicity. So, why won't Sprycel end up give me the same heart issues? Does Tasigna have other interactions that aren't necessarily inhibitions of a kinase?

Thanks everyone, feeling pretty good about going on the Sprycel now after a week or so completely off Tasigna. Here's to seeing what BCR-ABL levels are in a couple of months.

[Jerry.s]

Hi, Taylor,It is recommended that you get an EKG prior to starting Sprycel. Does your onc not do a complete metabolic panel everytime he does a CBC? Those should have liver function tests on them; look for ALT and AST, also Total Protein, Albumin (total and direct), and Alkaline Phosphatase. If he/she does not do that every time I would ask for every other or every three months, etc. I developed liver toxicity on Gleevec at 9 months.I did not like my first several months on Sprycel, but I did adjust; hopefully you will fare better. I do believe they are finding that many more people than originally showed in the studies are having PEs, many of us after 2+ years. Many of us are doing fine on a reduced dose. As Trey would say, "your milage may vary".Side effects are a crap shoot for all of us. Knowing that I have to take this drug for a very long time I just pushed on through - it worked for me, we all have our own tolerances.Good luck!Pat

.

Hello hannibellemo

I noticed that your alkaline phosphatase went up and I think that's why u switched tki . Mine has gone up to 158 and I have dull pain my side . I also have had a dull pain at my side before my numbers went up so they may not be related. My doctors don't seem worried with those numbers should I?

[hannibellemo]

Jerry.s,

 

When I developed Gleevec hepatitis the only thing that changed for me was a drastic increase in ALT/AST. Both eventually got up to 1500/1300 respectively. I felt fine and had no pain.

 

Once the numbers came back down to normal range, within 7 weeks, I was switched to Sprycel. I mentioned in another post that I recently realized that it took 5 years for them to come back down to where they were before the toxicity - mid to high teens.

 

That's why I feel it's important to keep a handle on metabolic functions.

 

Pat