18 replies to this topic

[SUE]

I've been taking Sprycel for 7 months.  I had taken Gleevec for 6 months but stopped because of very bad rash.  After a 6 week "vacation" from tki, I started Sprycel at 50 mg, and for the last 3 months I've taken Sprycel 70 mg.  I've had some side effects--aches, cramps, fatigue, and growths and irritation around my eyes, but nothing as bad as my reaction to Gleevec.

 

This morning I started on a blood pressure diuretic med---half of the lowest dose of the tablet.  The left side of my face below my eye got  very red, somewhat swollen, and pimples that hurt more than itched, and the eye irritation got worse.  Has anyone had a similar reaction to taking a blood pressure med with a tki?

 

Thanks,

Sue

[hannibellemo]

Sue,

 

The fact that the rash is only on one side of your face makes me think of shingles; because there appears to be eye involvement I would get it seen immediately. It may have nothing to do with the medication you are taking and Sprycel, for some, I've read has had something to do with the development of shingles.

 

Hopefully it is nothing but I wouldn't mess around with my eyes.

 

God luck!

 

Pat

[SUE]

Pat,

 

Thanks for your input.  I was kind of hoping it would be better this morning, but it wasn't, so I did go to the doctor.  She thinks it's either an infection or an allergic reaction.  I also used a new ointment for growths near my eyes(caused by Sprycel), and she thinks it could be a reaction to that.  She wants to treat it both with an antibiotic and prednisone.  I'm hoping one of those meds is effective.  

 

Just when you think things are going along well........

 

Sue

[hannibellemo]

Yeah, we learn never to get too cocky on these meds!   Glad it wasn't shingles!

 

Pat

[jmoorhou]

I cleared up a rash while on Gleevec by taking i cup of Kefir every day, it repopulated my gut bacteria and I think helped.

 

I also took predisone, stopped taking Gleevec for a week or so, then built back up to 400mg with a few weeks on 100 mg, then 200 mg then 300mg.  I've had some rashes but got a real strong ointment from the Kaiser.

[tinman1939]

Sue -

 

In my case, a six-day Methylprednisolone pack did wonders to clear up the acne looking nodules I experienced while taking Ponatinib (Iclusig).  The pack only works for a week or so aferward, then I have to have another one.  My goal is to not use Meth packs at all, since those have some undesirable long-term effects. Helping me reach my goal is the fact that I am now on Zenatane (accutane), and after two months my skin issues related to my TKI have been significantly reduced.

 

Good luck.

 

Wayne

[hannibellemo]

Wayne,

 

That's the first I have heard of accutane being used to help with TKI skin issues. Very helpful information to pass along!

 

Pat

[SUE]

Thanks for the suggestions for the rash.

 

 I'm thinking it was caused by Sprycel, either by itself or possibly having a stronger effect because of one of the other meds  I mentioned this to my onc, and asked her about taking a few days break from Sprycel and then resuming on 50mg.  She agreed, but wants me to go back up to 70mg fairly soon.  She doesn't think that Sprycel had anything to do with the rash.  

 

So many doctors seem to doubt that the tki's can cause these kinds of side effect, especially if they come up after someone has been on the tki for a while.  I've learned more about cml and the tki's from the great information and support on this board than from the various doctors I've seen during the past 15 months. 

 

Thanks to all for being there.

 

Sue

[pammartin]

Although we patients live the side effects of the TKI's I think it is interesting how professionals are quick to discredit the potential relationship between the two. I realize there are always going to be an overload of blame placed on the TKI's, but in many cases, the side effects are valid. Because we are all different and take many combinations of medications there will never be a standard of 'one size fits all'. While taking Sprycel at any mg. I experienced skin rashes from mild to severe. Sometimes my cheeks and ears would become hot and I experienced burning sensations along with the raised bumpy rash. For some reason the left side of my face always took the brunt of the side effect, my left eye would burn and water like I had soap in it. When I would have to break from the Sprycel, the symptoms disappeared within a few days if not sooner. Always found it interesting the worst time for the rashes and hot spots was not after I took Sprycel, but the next day usually about four to six hours before the next dose. I have come to the conclusion there is no reasoning of the side effects from these specialty drugs, or any drug for that matter. Too many factors and no way to create a good baseline for anyone to follow. I always thought I was a weirdo when it comes to my reactions to drugs, perhaps I am not so unique after all!
Pam

[winespritzer]

Hi Pam Martin,

 

My  skin bumps are beginning to increase as time goes on; I had a strange burning of my eyes last weekend and just couldn't figure out why; I would have forgotten all about it because it subsided during the day, if I hadn't read your message. I also know my doctor would poo poo it as a side effect of Sprycel.

 

At first he negated my puffy eyelids and eyeballs until I insisted, going into 3 months that my eyes were NEVER EVER EVER like that before treatment. So he advised me to refrain from salt and to stop thinking.

 

He wants NOTHING to be a Sprycel side effect because his dream is to kill off the cancer cells to undetectable.

 

Winespritzer

[gerry]

Perhaps you need to take the TKI's documentation on side effects in with you. LOL 

[winespritzer]

Dear Gerry,

THAT is a great idea.

Winespritzer

[hannibellemo]

I don't think doctors truly discount the idea that Sprycel, or any of the TKIs, have side effects. They know they have side effects and they also know that many of them are relatively minor; irritating to us, but not life threatening. They're "big picture" people - if the drug is working they expect us to deal with the minor inconveniences and for the most part I agree with that.

 

The important side effects I make sure they are aware of and listen to my concerns. The lesser ones I mention but don't really expect them to do anything. For instance, I know if I take an Aleve I am going to have a few petechiae on my hands and forearms the next day. If I told him about it I would expect him to say "So, if it bothers you don't take Aleve or try something else". When we tell our doc about the side effects, let the doc know what, if anything, we would like him/her to do about it, or ask if there is anything that can be done. Don't be surprised if there is nothing to be done!

 

The thing we need to understand is that all of these TKIs have side effects! These are very powerful drugs! The important thing for us to determine is "Do these sometimes minor side effects out weigh the benefits of the drug"? I hated Sprycel when I first started - I had all of these weird side effects for the first month and then felt like crap for several more months and then all of a sudden it was like a fog lifted and I felt CML "normal" again. 

 

I've had some major side effects and I still think the benefits outweigh the negatives. 

 

One huge benefit of this forum is it allows us to see if others have had the same issues and what, if anything, they did about it. We can test the waters if we're not sure if something could be serious or not. Sometimes it's just nice to know we're not crazy and we're not the only ones to experience a rash, a burning sensation, a UTI, liver toxicity, PE, PAH - whatever. We know we're not alone with this!

 

And this accumulated knowledge makes me very thankful for all you BIFs (Best Imaginary Friends) out there!

 

Pat

[Melanie]

Well said Pat!  One of the best benefits of this forum is sharing issues and gaining information.  On the subject of rashes, there's so many things that can trigger them and I believe the TKI's intensify those triggers if not cause them. On Tasigna, I had a horrible rash/growth on my chin that went away when I had to stop the drug due to low counts, but I still have a scar about the size of a nickle on my chin. Gleevec made me break out in hives all over so that med didn't last long and now after being on Bosulif for 18 months with no real skin issues, I've gotten a huge rash on my back and my upper forearm that feels like a thousand mesquito bites. So,I think that these rash issues can come and hopefully go at any time, whether they're activated by the drug, the sun, the heat, or any combination of things. The best we can hope for is that we find a treatment that help relieve them. Thanks to this forum and all the wonderful people, there's a lot of help. For mine, right now I'm just taking OTC antihestimine product and using topical cortisone which has helped with the itching. If it continues to get worst then my Onc will give me predisone and some topical steroid. Don't really want to go that route if possible.

[gerry]

My specialist was pretty good when it came to side effects and initially prescribed the med for fluid retention. Though we did have a discussion when the fluid retention stayed on even when I came off the Gleevec. We both thought it might be something I would normally suffer from. I guess the expectation is everything returns to normal when you stop taking your TKI. Turned out the Gleevec was still causing it until about 5 months into stopping.

[karenj]

Hi to All

And thanks for this forum. Recently diagnosed with CML and started on Tasigna and the Rash started!  It burns like a bad sunburn.

So, that is why I came to this topic to check what was said about it

Thanks again

[rcase13]

Yes I am on Tasigna for about 5 weeks now and my head catches fire occasionally. I just ignore it and go about my life. Oddly though it doesn't set the smoke alarm off and my wife swears she can't see the smoke coming off my head.

[sunshineC]

I believe having the right onc really means a lot.  I was diagnosed at the end of Feb of this year.  I was put on 100mg Sprycel.  The dr office gave me all kinds of information re. Sprycel.  But when I started experiencing several side effects, they didn't want to hear it.  I had severe headaches, nausea, stomach pain, light headed, and so very, very tired.  I spent 3 months basically living on my couch.  When I called their office because I thought I shouldn't be so tired, I had a nurse yell at me and tell me my bloodwork was fine and there was no reason why I shouldn't be back to work by now.  Every time I tried to tell the dr. about headaches, nausea, he acted like I was making it all up, or at the very least exaggerating.  After about 5 months of this, I got an appt with a different onc - unfortunately I couldn't get in until Oct.  I started coming back to work when I could.  Thank God I work with very understanding and caring people.  I don't think I started really functioning and putting some good days in a row together until Sept.  When I went to see my new onc (I actually have a team), they spent well over an hour with me, getting history, complaints, everything.  They actually gave me different things to try also.  And the big one for me... "try these things and if they don't work, we'll try a different med because quality of life IS important."  All this meant everything to me.  Someone finally listened and cared.  I've gone so long now, and things are really getting better, I probably will not switch drugs but I would be willing to bet that if I had started out with this dr he would not have let me go thru all that I did for as long as I did.  I remember how hard it was to take that pill every day, knowing that's what was making me so sick the next day.  I wanted to go back to work so bad and most of the time, couldn't even drive.  I felt like I would always feel like that.  I still read about people who have a rough few weeks, maybe even two months and then, get to what did you call that Pat? - CML Normal?  I wondered for a long time if all those days on the couch were going to be My CML normal.  Anyway, I don't know why it took so long to get "ok", I don't know why I waited so long to change doctors, but I feel so much better now.  I know that if something else comes up, or goes bad, someone is listening and will do something to help me.  It's not good to have to feel that bad for that long, but worse, thinking that it was the way it was going to be for the duration.  I don't think I could have done it much longer.  Quality of life DOES mean something.  Thank God I have most of that back now.  I really don't mean to be such a bummer about this and sorry I've carried on for so long.  I guess I just had to get it all out.  And thanks to all here who did support me.  And guess what JPD and Trey - two days in a row now I've had no hair to clean out of the shower drain!!  Course it had to stop AFTER I cut my hair, but I appreciate the support for that too.  I felt bad complaining about it all the time, it's just that was the last straw I think.  Anyway, all good now.  Thanks to all for puttin up with me!!

[Marnie]

Glad that you are feeling better!  And short hair isn't so bad.. .although it amazes me how much more upkeep there is with short hair.  When I had my long hair, I could just put it up in a French braid and forget it.  Now that it's short I have to deal with it every morning, and get it cut every 6 weeks or so.  Gah!