27 replies to this topic

[simone4]

I just posted under "has anyone had hives with Gleevec".

Didn't know how to bump

Thanks.

Simone

[hannibellemo]

Hmm, I thought posting would bump it.

[soundoff]

With Tasigna and when I take protine shakes...

[Trey]

Hives are always bumps. 

[OhNanna]

I'm recently diagnosed CML. I had a crazy case of hives all over my body and itching so bad I wanted to scratch my skin off just 4 days after starting Gleevec (400mg). I generally assumed that it was an allergic reaction. The Urgent Care doc told me to stop taking the Gleevec until I saw Onc. He also put me on Prednisone to fight reaction. Hives cleared up in a couple days. Onc says that it was not a allergic reaction, just a side effect, and he really wanted me to stay on Gleevec if possible. He changed dosage to 200mg along with 20mg of Prednisone to see if my body would tolerate it. After a few weeks he increased the Gleevec dosage to 300mg, then 400mg. Now we are stepping down off the Prednisone. Generally, that's the good news.

The bad news is that I still deal with a slew of other side effects, which I honestly don't know if it's from the CML, the Gleevec, or the Prednisone, or a combination. (Primarily, headaches, body aches, fatigue, insomnia, nausea, diarrhea). I'm also diabetic, so I'm very motivated to get off the Prednisone, which comes with a huge list of side effects, including raising/making my blood sugar hard to manage. The other side effect that I'm curious if others are dealing with are crazy hot flashes. (I'm 55 and menopausal, but this is stepped up a level!)

Any similar experiences?

[kat73]

Other than the headaches and body aches, I had all of the above on Gleevec, along with screwed-up lab values (various), periorbital edema and depression. Things like the diarrhea can be managed (probiotic plus Metamucil wafers, etc.) to varying degrees.  Also, stepping back off the full dose, as your doctor did, helps at various times.  Many people on this forum will attest to these side effects waning after a period of time, if you can stick it out.  For me, I was no better after two years on 400 mg Gleevec, although the times I was cut back to 200 or 300 mg (I can see by my timeline diary) I reported I felt better.  By the end of two years I had had it, and my new doctor switched me to Sprycel and things got way, way, WAY better.  But there are people who have had the exact opposite experience. It's very hard to tell whether your side effects will resolve themselves and how long to give that project.  Everyone makes this individual decision, obviously in concert with their oncologist.  It sounds like you have a good one - attentive and flexible.  Good luck to you - one way or another "things" will get better!

[simone4]

OhNanna, hives are horrible, aren't they?  After 6 years on Gleevec I started having

them. (Read my other post "Anyone have hives while taking Gleevec.  It will give

more info)

 

I went to the onc and after being off of Gleevec for two weeks, they got better

but he re-started me on 200mg. I started back and broke out in hives after

about 24 hours. My allergist saw me last Thurs and I am going to get a

long-lasting injection called Kenlog tomorrow.  He didn't want me on the oral

Prednisone for the reasons you just mentioned.  Maybe the shot will calm

everything down so I can take the G. I will be interested in your case if hives

come back after stopping the Pred.

 

I had fatigue, bone pain in my legs, a few headaches when I first

started Gleevec.  So those problems you described are common at

first. It was not an easy few months but nothing that "tripped me up" as

the kids say.

 

Stay in touch and let me know how you're doing.

I also am taking an anti-histamine onc prescribed and

it is not working.  Only pred will do the job.

Take care. I'm sorry you got off to a bad start.

 

Simone

[simone4]

Other than the headaches and body aches, I had all of the above on Gleevec, along with screwed-up lab values (various), periorbital edema and depression. Things like the diarrhea can be managed (probiotic plus Metamucil wafers, etc.) to varying degrees.  Also, stepping back off the full dose, as your doctor did, helps at various times.  Many people on this forum will attest to these side effects waning after a period of time, if you can stick it out.  For me, I was no better after two years on 400 mg Gleevec, although the times I was cut back to 200 or 300 mg (I can see by my timeline diary) I reported I felt better.  By the end of two years I had had it, and my new doctor switched me to Sprycel and things got way, way, WAY better.  But there are people who have had the exact opposite experience. It's very hard to tell whether your side effects will resolve themselves and how long to give that project.  Everyone makes this individual decision, obviously in concert with their oncologist.  It sounds like you have a good one - attentive and flexible.  Good luck to you - one way or another "things" will get better!

Kat73 I am interested to your response to Sprycel.  How many mg. did you start with and are on now.

Onc told me if the hives come back I have to go to Sprycel.  I always thought if that was the case I

would simpy throw in the towel.

 

I would like to know more about your switch and what to expect if case...

Thanks

Simone

[kat73]

Simone4 - When I switched to Sprycel I went on 100 mg tablets.  After 3 months, I was bumped down to 70 mg, where I have stayed for four years.  The reduction was to see if my "reds" (RBC, hemoglobin, hematocrit), platelets and also my low WBC (and absolute neutrophils) would come up to nearer normal, which they did.  The first thing I noticed was my puffy eyes were almost all gone (they have since crept back to about half as bad as on Gleevec.)  I also immediately felt better all around - no malaise or nausea.  I did not ever get the Sprycel headache that many people report.  (They usually go away within a few weeks, seems to be the consensus.)  As for my PCR, my first test came three months after starting the 100 mg of Sprycel and was a big, big drop from where I'd been on Gleevec.  HOWEVER, those were from two different institutions and two different labs, so that's the grain of salt right there.  At any rate, I had hit MMR, and the number continued to go down slowly on 70 mg.  A month ago I got my first "undetectable."  It's quite possible to imagine getting to the same point if I'd stayed on Gleevec, but I certainly would have had to reduce the dose, probably to 200 mg, as from experience that had been the only level where I felt almost OK.  But I think the oncologist felt that a switch to Sprycel would be better than 200 mg Gleevec, given that I wasn't yet hitting the guideline points.  And, for me, it did turn out to be a good combination of handling the CML along with reducing side effects.

 

I feel so terrible for you with those hives!  I've never had them, but they sure sound vile.  You must be going nuts.  I did have an experience a long time ago when I had to do the prednisone taper thing - and you're right, nothing works so dramatically as prednisone.  And yet, you can't stay on it.  I admire your fortitude and perseverence.  Hang in there and keep trying.

[simone4]

I went to my allergist last week and he ordered an ANA and TgAb 9 ( a thyroglobulin antibodies).

Well, the results were shocking.  I had a high of 213 IU/ML.  It's either Hashimoto or possibly

thyroid cancer.  I am waiting for the onc's nurse to get me in an endocrinolgist ASAP.

I started back on 200 mg. of Gleevec over the weekend and the 2nd dose brought

back the hives.  I will try again tonight with dinner. My allergist was going to treat me

with predinsone tomorrow but that will screw up testing with my Endo.  So hoping

the reaction is not as bad, if so he will switch me to Sprycel.

 

This is all surpising.  I am tired from it all and I haven't even got a dx or started

the b.s. that goes along with it.

I have read on older posts that some of you have had thyroid cancer.

Everybody here seems to be such warriors when they are confronted

with this.  I have a Viking bloodline but I am not up for the fight.

 

Thanks for listening.

Any advise is appreciated.

Simone

[kat73]

Simone4 - No, no Viking here either.  I have been in the place you are, where you just can't take One More Thing.  So, so, so tired of it all.  And "they" keep heaping it on - tests, preliminary diagnoses, and the most stressful thing of all:  waiting.  I hope that Trey posts here for you, as I would bet he'll have some encouraging words, medically.  Just hang on, distract yourself so your mind can get a rest, and realize that the truth is out there somewhere and it will be much better when you know what it is.  You can face it then. 

 

BTW, I had my thyroid out in 1979 because of some nodules that turned out to be benign.  (This wouldn't happen today, I suspect.)  At any rate, I can tell you the surgery, for me, was extremely simple and easy and there was no pain. The scar went nearly invisible in a couple of years, and was just a thin neat line before then.  Also, I think the stats on thyroid cancer are pretty darn good, but I will leave the medical info to someone more knowledgable.  I know you don't even want to think about this possibility right now, anyway.  And there's no need to.  Worry only when you have to!

[OhNanna]

Wow...seems I lost this thread and then just found it again. I've never done the AA thing, but I'm really learning the "one day at a time" thing! Sometime I get so frustrated because I can't string two good days together. But somehow, I believe with God's grace, I manage to put one foot in front of the other.

Simone4, hang in there! I was diagnosed with Hypothyroid (Hashimoto) about a year ago. It was no surprise since both of my parents are also hypothyroid. The diagnosis was more of a relief than a problem! Ok, we've all heard the "one pill a day" thing, but really, one little pill first thing in the morning has made a real difference (mostly tiredness/fatigue)! And that little pill didn't come with any side effects!! So dont fear it!! If you do Facebook, search for Hypothyroid Mom. She has some good info! I've always struggled with my weight and it actually helped a little...and wouldn't you know, the only side effect from CML or Gleeve. That I haven't had is the "unexplained weight loss". It's ok to giggle with me here! Even my Primary doc laughed at the terrible luck!

I'm really finding that staying connected with my support system - including here - is helping on the lower days. I've been referring to this as my CML Roller Coaster, because of all the ups and downs and sudden turns. On the good days it's hands in the air!! I'll pray for you as you await the dx and hoping you find a "hands in the air" day soon!

[chrissy778]

This is so odd, I just started a new Gleevec pill pack and after two days I now am so itchy on my side ribs and back. Almost unbearable to the point it wakes me up in the night...

[gerry]

I went to my allergist last week and he ordered an ANA and TgAb 9 ( a thyroglobulin antibodies).

Well, the results were shocking.  I had a high of 213 IU/ML.  It's either Hashimoto or possibly

thyroid cancer.  I am waiting for the onc's nurse to get me in an endocrinolgist ASAP.

I started back on 200 mg. of Gleevec over the weekend and the 2nd dose brought

back the hives.  I will try again tonight with dinner. My allergist was going to treat me

with predinsone tomorrow but that will screw up testing with my Endo.  So hoping

the reaction is not as bad, if so he will switch me to Sprycel.

 

This is all surpising.  I am tired from it all and I haven't even got a dx or started

the b.s. that goes along with it.

I have read on older posts that some of you have had thyroid cancer.

Everybody here seems to be such warriors when they are confronted

with this.  I have a Viking bloodline but I am not up for the fight.

 

Thanks for listening.

Any advise is appreciated.

Simone

 

Hi Simone,

keep us up to date with what is happening, the only plus side in this is you have a possible diagnosis for it.

[Billie Murawski]

I suffer from clinical depression and I've been on antidepressants for over 30 years. I have been taking wellbutrin for over 10 years. It has worked very well for me. A long time ago I went for my med check and I was really having a hard time. I told my doctor I don't know what's going on I just feel like I'm sliding backwards. He told me they had gone generic and some companys use different fillers. It was a bright orange pill and I got a 90 day supply all the time so I didn't pay any attention to the papers that came with them. Then there was a big ruckus because a lot of people were having the same problem as me and because our ins co only covered generic drugs when they became generic. One time I asked my doc to prescribe brand name only, silly me I thought if doc said I needed it then they would have to send me brand name at generic price (I never claimed to be smart) ins got back to me I would have to pay $400.00 for brand name needless to say I got generic. My doc told me that all generic drugs contain the right amount of medicine but many of them use cheaper fillers dyes etc. With Gleevec going generic especially because now there are 3 of you on G I wonder if they are trying out a new dye or filler or something it wouldn't be illegal I think as long as the right amount of medicine is in the pill, it's just a thought we probably will never know. They did find out that they were putting the wrong formula in the 300mg pills

so people who needed 300mg. were only getting 150mg. I still think wellbutrin isn't like it used to be.         Billie

[simone4]

OhNanna, thanks for sharing that information. So you were diagnosed with Hashi

before CML?  How much Synthroid are you taking and has it been increased

since starting Gleevec?  I am having an ultrasound for  thryoid next week.

Will know the results soon.  One day at a time, that is so true.

Take care.

I hope Gleevec is being kinder to you now.

Simone

[simone4]

This is so odd, I just started a new Gleevec pill pack and after two days I now am so itchy on my side ribs and back. Almost unbearable to the point it wakes me up in the night...

crissy, my hives started on side ribs and back, especially after a shower and went to bed.

If I sat up in bed I itched on my back and when I lay down to sleep it itched on my

sides.  Pressure must be involved in some way.

Take a benadryl and see what happens.  It it goes away, good.  I am on Atarax

and it is keeping the 200mg. dose quieter.

Hope it goes away soon.

Simone

[OhNanna]

Simone4- Yes, I was diagnosed Hypothyroid/Hashimotos about a year ago. I take 25mg Levothyroxin. I was dx CML June 2015. I started Gleevec end of June. Because of the horrible feeling of fatigue, my Primary Dr did testing about a month ago and my TSH was normal so my dosage hasn't changed.
I've been praying for you!

[simone4]

Simone4- Yes, I was diagnosed Hypothyroid/Hashimotos about a year ago. I take 25mg Levothyroxin. I was dx CML June 2015. I started Gleevec end of June. Because of the horrible feeling of fatigue, my Primary Dr did testing about a month ago and my TSH was normal so my dosage hasn't changed.
I've been praying for you!

Thanks for response. Last night I changed sheets, etc. and slept very well, no itching.

I am still taking Rx antihistamine but only 3 times every 24 hours.  After shower last night

it was better and I am so glad.  My thyroid levels were normal (serum) but I have a thryroid

ultrasound on Friday.  One day (and Night) at a time.

Simone

[Buzzm1]

Thanks for response. Last night I changed sheets, etc. and slept very well, no itching.

I am still taking Rx antihistamine but only 3 times every 24 hours.  After shower last night

it was better and I am so glad.  My thyroid levels were normal (serum) but I have a thryroid

ultrasound on Friday.  One day (and Night) at a time.

Simone

Happy that you found some relief Simone.