12 replies to this topic

[Augustfirst2010]

Hello all!!!

I talked to my VA oncologist yesterday and he was taken aback by the severity of my side affects. After talking about it (I like him more than the town doctor I have been seeing, she only has three patients with CML, but he has a lot more experience), he wants me to try Sprycel(?) and see what happens. He went over the major side affects and the danger spots (water in the lungs, major headaches) with me and gave me a lot of literature to read up on the subject. He went over Tasigna with me and after hearing his experience, I don't think I will ever want to try it. So, if Sprycel makes things worse, he said he will put me back on Gleevec and probably put me out on disability. He says that there's no "ryhm or reason" that can be pinpointed for the differences or severity of side affects that each person experiences on Gleevec, but I was in such pain yesterday when he saw me that he was really concerned. It started Sunday afternoon at the family get-to-gether, steadily got worse until I had to leave midway through it, and I couldn't go to work Monday or yesterday. I tried today and only lasted 2 1/2 hours before I had to come home.

Anyway, and advise having to do with taking Sprycel would greatly be appreciated. I probably will not get it until next week in the mail and he said to wait until my weekend to start it in case I have a really hard time with it at first. Sorry I haven't been involved much lately in all the fun...there's just...things...

Take care, God bless!!!

[VickiW]

Hi!

ok, there is a great discussion on this board elsewhere about that very thing but I will share with you my experience.  I switched from Gleevec to Sprycel 2 years ago.  Not for the same reason, BUT, I was suffering some horrible side effects as well which got worse and worse as the dosages were increased.  Sprycel was like a miracle.  The first day or two for most folks seems to be the worst.  Mostly nasty headaches and muscle/bone pain.  a lot of this seems to be greatly lessened if your onc will allow a few days between quitting the Gleevec and starting the Sprycel.  Those who have not had this break seem to have the most discomfort with the transition.  Anyway, once you get past the first week or so, things are like night and day compared to what you suffered on the Gleevec.  Trey can give you all the technical stuff as to why, but what I know is that Sprycel basically gave me my life back.  Sprycel is not without side effects either but the big difference for most of us is that they are milder and tend to "cycle" (here for a week or two, then disappear and return in time and disappear again, etc.) and with each cycle the side effects get milder and milder to the point where I am now and that is I hardly notice them at all.  The only ones I still deal with are occasional constipation and muscle/bone pain.  Actually, now that I think about it, I don't remember the last time I even had bone pain.  Let me know how you do with the transition.  It probably wouldn't hurt to have your Onc give you a good pain killer just in case during the switch.  My did, but fortunately, I didn't really need it after the first day so I never filled the prescription.

Hugs and prayers

Vicki

[CallMeLucky]

Vicki,

How is your fatigue level on Spyrcel compared with Gleevec?  Have you had any issues with pleural effusions?

[VickiW]

Took some time, but the fatigue got much better.  What happens now is if I overdo one day, the next I'm pretty much a zombie.  However, I don't get exhausted just doing things like shopping like I used to and I can actually work in my gardens again.  I am also not sure what little fatigue I do now suffer is more from neurontin I am now on or from the Sprycel.

As for pleural effusion?  Nope!!!

To be honest, if I ever run across the chemist that developed Sprycel I would probably attack him so muck I would have to apologize to my hubby!

[VickiW]

I do still have issues with (sometimes hugely) puffy eyes and bags in the morning, but according to Dr. Druker's PA that will never go away without surgery because of the extreme swelling I had thanks to gleevec.  Since the Gleevec had already done such a number on my skin (like elasticity, etc.) that I look years older than I am, saggy eyes just adds to "Bassett Hound" look.  (I have actually been known to frighten kitty cats~hehehe)

[VickiW]

I absolutely agree with Billie!  No more porcelin two-step!  I avoid the water pills by seriously watching my salt intake otherwise I blow up like a water balloon  Oh, and my hair stopped falling out, yea!  Only thing is I used to be a red head now I am an ash blonde with a LOT of grey  Have to really watch the weight gain thing too.  Started sneaking up on me and then when I was put on neurontin (a known weight gain causer) I really had a problem.  slowly been able to get things back under control though.  Just as well, I think my bikini days are long behind me (LITERALLY-hehe).

[Marnie]

Hi, August. . .much of this has probably already been said.  Oh well. . .here goes my 2 cents:

I didn't realize how lousy I felt on Gleevec until I switched to Sprycel.  Been on Sprycel for 3 months now and it's been great.  You can take it with or without food.  If I took Gleevec without enough food, it really messed me up.  No bathroom issues any more, though truth to tell, I am definitely gassy about 2 hours after I take Sprycel.  It's annoying. . .but not as bad as the Gleevec GI issues.  I have more energy than I did on Gleevec, though I still have fatigue issues.   The only drawbacks for me have been that I am extremely sensitive to the sun.  If I'm out in the backyard without sunscreen and a hat, I will burn in 10 minutes.  Also, my face tends to be quite flushed-looking most of the time.  Lastly. . .and this may be too much information. . .it has really messed up my menstrual cycle.

I will get my first post-Gleevec PCR results next week.  Keeping my fingers crossed that it will be good.  IF my numbers have improved significantly, then I say GO FOR IT. . .I LOVE SPRYCEL!!!  If my numbers haven't improved, then I still like Sprycel better due to the lessening of side effects.  But I do miss the golden bullet.  Sprycel is a boring pill.

Marnie

[Marnie]

Oh. . .and a suggestion. . .this worked really well for me.  I did a half-dose of Sprycel (50 mg) for 5 days before starting full dose (100 mg).  I took a 4 day drug break from Gleevec before starting Sprycel.  I had a mild headache for about 2 weeks but none of the monster headaches that I had heard about.  I highly recommend this method.  BUT. . .have your doc prescribe a full 30-day supply of 50 mg pills for the first month. . .that way you'll have a few pills left over at the end of the month.  Then you can go with a 100 mg prescription.

Marnie

[hannibellemo]

Hi, August,

I will give you a different picture of Sprycel. Although I'm fine with it now, I had a really hard time at the beginning.

Unlike most who switched, I had very minor side effects on Gleevec and I was almost CCyR (0% FISH) when I had to stop taking it because of severe liver toxicity. I was off everything waiting for my liver enzymes to get back to near normal. My first night on Sprycel, Oct. 9, 2009, (I remember like it was yesterday ) I woke up with tremors so severe I could not force myself to be still. Then I vomited a few times and everything settled down and I slept. I had one headache that I recalled and the first night was not repeated - with the exception of the trembling every evening in bed which gradually became less severe and eventually went away.

I went through wind burned feeling face, mucositis, all within the  first two weeks. I had a month where I felt pretty good and then on Thanksgiving night I just started to feel like crap! I really don't have a good way to describe it, my heart would pound walking up the stairs, two minutes on the eliptical and I was done in. I sat at work and prayed that no one would call or come in needing anything because I simply could not function. There were many mornings I took my pill with tears in my eyes, and times when I really hoped my counts would tank so I could take a break. I don't know if it was severe fatigue or general malaise or what but this lasted for about 4 months. Then I'd feel pretty good for 1 out of 4 weeks, then 2 out of 4. Now, I very seldom have a rotten day.

I reached MMR in the fall of 2010 and my PCR has continued to slowly drop (knock wood!).

I hope Sprycel is good to you and you have an easy time from the start. Evidently, we all just have to find our own way on these drugs.

Good luck!

Pat

[Tedsey]

If you can, I think a break between drugs is a good idea.  I was violently ill for a week going straight from Gleevec to Sprycel.  I also had QOL issues on Gleevec, so I understand what you have been through.  However, when you come down to it, what is it that we should expect having cancer?  I think expecting no side-effects from our drugs is unrealistic.  I think a lot of this comes from the fact that so many of us didn't even know we were sick (and feel better off the drugs).  My CML, with a very high WBC was caught at my yearly exam (ironically, I had had normal bloodwork 8 months previous).  I felt totally normal, but was deathly ill.  And, I am still unsure about the trade off with chemotherapy.  It seems if our drugs are successful, we are let off a bit lighter, side-effects and all.  Some cancer survivors never have to visit the cancerworld again and are "cured" for the rest of their lives.  Some are maimed, get a secondary cancer, like CML, and other health issues because of previous treatment, like heart disease and internal scarring, and we cannot forget GVHD that make living miserable.

My low WBC and RBC improved on Sprycel to a point where I don't always need shots for both.  However, my PLT became lower and remain that way.  Nevertheless, it is livable.  Despite bouts of severe anemia, I feel pretty good.

Wishing you much success on the drug, and, of course, minimal side-effects if any,

Tedsey   

[Marnie]

I wasn't very clear. . .Full 30-day supply of 100 mg per day. . .but in 50 mg pills.  

[Augustfirst2010]

Hi guys...

well...I have been on Sprycel now for three months, and although I am doing much better than what I was feeling on Gleevec, I am still having issues (but then, we probably always will so I am getting used to the idea). My side affects, besides the bad headaches that I still get from time to time, has mostly been bone/muscle pain (out of nowhere!)...I was at work one night and suddenly it felt like someone stuck a needle into the tip of my ring finger (left hand) all the way down into the bone. It was so sharp and painful that it practically paralyzed my whole left arm for almost half an hour. Then I have some days where just walking from the parking lot to the office takes so much out of me that by the time I get to settle in and log on the computer...I need a serious nap! We have a long hallway that (no kidding) goes up-hill...the idiots who built the place didn't want to waste time levelling the ground before they built the place, they just built it up-hill...so by the time I walk from one end of the building to the next, I'm done. I pant like a dog and I have to plop down into my chair and rest before I can do anything. Sprycel also seems to mess with my intestines still, not as bad as "G" but about every two weeks I get so constipated that I double over, then after the dam is busted it seems everything just wants to leave at once. Taking fiber to help, and it has a little, but it hasn't stopped the problem. I saw where someone said their face felt flushed...I was wondering about that, because there have been days when my face feels hot to me, but when I touch it with my hands it doesn't feel warm to my touch...thought that was weird.

Oh ya...and I almost passed out on two diffferent occassions, I was glad that it was while I was sitting down at my desk and not walking!

Just in case this helps anyone, the papers said not to take garlic while on "S"...but I couldn't give up garlic...so I learned the hard way. Evidently, both garlic and "S" are drugs listed as "vasodialators" meaning that they cause the veins in your brain to dialate, carrying more blood. Well, the more blood pressure you have in your head, the more your brain feels like it is going to explode...take it from me, don't take garlic with "S"...I have had to give up one of life's most treasured spices...

See ya!

[VickiW]

MORNING!

I've been on Sprycel, as previous, for, ummm, 2 1/2 yrs. now.  Took way over a year for me to get thru the last of the Gleevec side effects.  My skin has finally went from rice paper thin back to normal.  I even have a tan for the first time in 4 years!  As for the Sprycel symptoms~"plumbing" pretty much finally normal with occasional bouts of get-up-and-goes.  Still dealing with the face turning red, purple, sometimes in blotches only on one side or other, other times just a big rectangle across nose and cheeks, sometimes whole face.  On days when my eyes are all puffed up I can scare small animals and children!    At least for me, the fatigue has finally gotten better.  Still kind of cycles, but much milder and lasts a shorter time.  Bone/muscle pain?  Yep.  Just had a fun bout with that the other day in both legs and hips, whopee.  Doesn't happen very often tho.  I was having serious problems with neuropathy and am now on Neurontin which is probably masking some of the minor pain so I can't say for sure just how bothered I am.  I can say the neuropathy has gotten better and some of the loss of sensation has even reversed.  I guess all I can say is, at least for me, it took some time, but things definitely got much better.  I have a great deal of my quality of life back!  Mostly just have to watch out for the occasional light-headed spell (fell on my butt a couple of times, not pretty) and will get really fatigued the next day if I get really carried away in the gardens etc. which will also trigger some nasty leg pain (neuropathy?) otherwise, I'm cruisin'!!!!

hugs and prayers,  Vicki