21 replies to this topic

[SUE]

I'm fairly new to cml (dx end of April) and found a great deal of guidance on this board when I asked about frequency of monitoring.  Now I have a question about a rash that started about 2 months after I started Gleevec.  First there was just a thin horizontal red mark on my neck, kind of shaped like an arrow.  Then I got a rash on my face, and somewhat on my arms and legs.  I went to the dermatologist, who prescribed hydrocortisone ointment.  He also biopsied a spot at my request, and it came back with dx of seborric dermatitis.  He told me to continue using the ointment, and come back in a month for an allergy patch test.

In the last week or so, the rash has been getting worse, especially on my arms and legs where there are big pink blobs and some smaller, darker pink blobs.   There are some areas on my legs and arms that seem to have white flaky stuff on them.  This white stuff is on my face too, especially around my nose.   I went back to the dermatologist, who said that something else was going on besides the original rash.  He biopsied a spot, and  he also switched my medication to Triamcinolone Acetonide ointment.

He didn't seem at all familiar with cml or with Gleevec.  I asked him if he thought it was leukemia on my skin, and he said no, he wanted to find out if it was a "Gleevec rash."  

I was wondering if anyone has ever heard of a specific Gleevec rash, and also if these symptoms seem familiar to anyone.

Thanks very much.

Sue

[GerryL]

I had the Gleevec rash on the backs of my legs, wasn't itchy for me, though I've heard that it can be. I was already on an antihistamine which stopped it itching. I used a topical antiseptic cream (Savlon) and the rash disappeared within a week or so. It tried to come back when I was sick with a virus, but disappeared after a couple of days. I haven't had it since.My rash was pink blobs similar to hives.

People react in different ways to the TKIs, so you could try an antihistamine first and if that doesn't work then perhaps look to switching drugs or taking a short drug holiday (under your Oncs supervision) to see if it is the Gleevec.

[Trey]

The connection of the rash to the TKI drugs is that the TKI drugs inhibit some enzymes (kinases) unrelated to CML treatment which affect the skin and other fast growing cells (hair folicles, inside of the mouth, nails, intestinal lining, etc).  There is no test to show the connection since it is not something residing in the rash, but rather a change in how the skin cells are growing in that area.  Sometimes it is also connected to sun exposure since TKI drugs can enhance skin sensitivity to the sun in some people, so cover the area when outside.

[Marnie]

I've had a rash for about a year now, which I attribute to Sprycel.  Went to the dermatologist, which was a waste of time and money.  The rash got really bad before it started getting better.  Maybe some of the following worked, or maybe they didn't:

Pine Tar soap

Hydrocortisone Cream

Dandruff shampoo

Lotion, lotion, lotion

Good luck. 

[CallMeLucky]

Rashes from TKI drugs are well documented, but it is not surprising your dermatologist is not familiar with this since it is not that prevalent in general population.  Unless he has treated someone on TKI drugsin the past it is likely he would know about it.  You should actually discuss this with your oncologist.  They should be familiar with this side effect and have recommendation on how to treat.  Onc should also be made aware of all side effects so they can monitor appropriately.  If you have not called this in to your Onc, you should let them know.

[Marnie]

My onc dismisses the rashes as unrelated to Sprycel.  I have stopped mentioning it to him.  I like my onc, but this is one area which I find irritating. 

Earlier this summer, we were on a motorcycle trip.  Between the horrific scalp and ear rash, a new motorcycle helmet, and too many mosquitoes, my ears got so irritated and sore that they swelled up like balloons.  It was agonizing to put on and take off the helmet each day. 

[CallMeLucky]

Sorry Marnie.  I got chicken skin from Sprycel, showed it to my onc and he said "yep, that's the Sprycel".  Fortunately at this point it is not painful or itchy and hasn't really shown up much on my face, mostly arms and trunk.  I know it is Sprycel because the skin issues I had with Gleevec were different and this started when I started Sprycel it is also directly related to dosage when on lower dose it was less, as I go up in dose it is more.

[SUE]

Thanks to all for the responses.  Marnie, I know what you mean when  you say maybe some treatments worked, or maybe not.  It's so hard to know when any one thing is effective, but I'm going to keep at it.

Next Friday, I will find out the results of the 3 month blood test, and will have a better idea of how effective the Gleevec is.  The white blood cell count has been continually good.  I would hate to switch from Gleevec at this time, especially if the molecular and  cytogenetic responses are good.  My oncologist does not seem at all familiar with possible treatments for the Gleevec rash.  His attitude is that if the rash is too difficult to deal with, I need to switch to another medication.  I would prefer not to deal with a bunch of new side effects at this time.   I was wondering if people have had different reactions from there onc, such as suggesting alternative ways of dealing with the rash.

I've read about some people who have taken a 'vacation' from Gleevec, or have tried 300 instead of 400 mg for a period of time.  Is it too soon for me to even think about either of those options?

Thanks again for  all your comments.  I feel less helpless and confused, knowing that there are so many people who have experienced this illness, and are willing to share and encourage.

Sue

[ChrisC]

Hi Sue,,

Within a few weeks of starting Gleevec  400 mg in 2008, I had a full body rash. I got a referral to a dermatologist a week after my onc first said it wasn't Gleevec-related — when I told him that it was getting worse he did make the referral.

The dermatologist wasn't familiar with Gleevec, so she threw everything at it to see what might help: Predisone tablets, cortisone cream, and another cream to be used once overnight. I was also put on a diuretic for edema.

Something worked, and after a couple of weeks I began tapering off the Predisone, and I stopped the cortisone cream too.

BTW, the diuretic had a side effect that wasn't explained to me: my hands and feet swelled up and the skin dried and cracked and bled. It took awhile, and much discomfort, before I stopped the diuretic and immediately it all healed. A few months later the edema was quite bad and I restarted the diuretic: I knew to stop it when again there was the same swelling and bleeding of my hands and feet!

Good luck to you! I hope a dermatologist can help you

ChrisC

[SUE]

Thanks, Chris.  I think what's scaring me the most is that the dermatologist seems to want the oncologist to handle it, and the onc wants the dermatologist to handle it.  The dermatologist hasn't mentioned prednisone at all.  I don't want to jump off of Gleevec and jump onto something else, especially if the 3 month results are good.  The rash is quite extensive, but doesn't itch all the time.  I think I can handle it if I had the feeling that someone is willing to try different approaches.  The dermatologist told me to come back for stich removal in 14 days, which is after my next appointment with the onc.  I think he's hoping that I will go off the Gleevec, and he won't have to deal with it.

Sue

[ChrisC]

Sue, I kept taking Gleevec while taking the Predisone for the rash. Once the rash disappeared, it never came back. However, other skin things continued and that's what the creams were for, now that I think of it (all a long time ago, fortunately!).

After 7 months trying to make due with crummy Gleevec side effects I switched to Sprycel. That fit me better though still there was debilitating fatigue. However, within 4 months I was PCRU, and that has never changed these past 4 years—next month will be 2 years I've been off all medication. If I'd stayed on Gleevec, would the results have been the same? I'm so glad I'll never know!

The first months and the first year are the most challenging for many: it does get better with time. Hang in there and continue asking your onc and your PCP for help with the side effects. And know that it is more than okay to say your quality of life deserves a very high priority even with CML—these other TKIs are there to be tried, please don't let fear of change keep you in any degree of suffering. You can likely always go back to a previous TKI if you prefer later on. But we kind of owe it to ourselves to find what works best for us: there is no "one size fits all" TKI anymore!

ChrisC

[GerryL]

Sue,

I'd try an over the counter antihistamine + a topical antiseptic cream first and if that doesn't help then you may need something stronger like the Predisone, as Chris has mentioned.

I wouldn't drop the level of Gleevec until you'd reached further milestones (I'm currently on 300mg but only after I'd been PCRU for a year).

Doctors do stop and restart their patients on the TKIs due to side effects, I never needed to do that.

Good luck with all of this.

[SUE]

Thanks Chris and Gerry for the suggestions and support.  I think I see some improvement from the  Triamcinolone.  (I'm hoping it's not just wishful thinking).  I'm not eager to take Prednisone unless absolutely necessary, but I would want to try it if the ointment doesn't work.  I've been taking Claritin, but the rash was getting worse while I was taking it,  I was starting to wonder if the Claritin was making the rash worse. 

The rash really had me feeling down, especially because I had just started to feel better--no more nausea, less fatigue.  The encouragement from this group has really helped.  I can't begin to tell you how much I appreciate it.

Sue

[GerryL]

Hi Sue,

I was taking Periactin which is an older type of antihistamine, I was put on it to see if it helped with my migraines. I'm not sure if it is available in the States for you to try.

We're glad you've found this site, I know it helped me in the beginning and continues to do so.  Jump in with a question anytime you need to, there will always be someone around to talk to.

[siracuse@netsync.net]

I am new to this site, and am glad someone else has a rash.  Mine is strange.  I get little tiny pimples that comes and goes.  Usually on my trunk and arms.  I was diagnosed on June 6,2011, and the "rash" started appearing shortly after starting  Gleevec.

I am so glad I will now be able to chat about my CML.  There are sometimes things happening to me that I don't understand.  Like, how come every once in a while that I vommit.  No prewarning, no sick feeling.  And after vommiting, I feel quite normal.  Could this also be a side effect?  I hope your rash goes away soon.  Good luck.

[SUE]

Hi Siracuse,

Welcome to the site.  You will find a lot of help and support here.

My rash includes some little pimples, also large light pink blobs and smaller, darker red blobs.  I'm not sure if there is a typical Gleevec rash, or several different types that can be cause by Gleevec.

Have you spoken to your oncologist about the rash and the vomitting?  Also, you can search this board by entering a search term in the box in the top right.  You can also post a separate question, asking if anyone is familiar with that as a side effect. People on this board are wonderful with their responsiveness and encouragement.

Sue

[siracuse@netsync.net]

Hi Sue, 

Yes I've talked to my oncologist.  I have zofran for nausea, but sometimes, I will just vomit without warning.  Very strange.  MyCML.

[pamsouth]

Hi Sir, 

I hesitated to reply because I always thought my situation was one of a kind.  I was Dx in 2005 and went on Gleevec.  I had my Gall Bladder taken out in May 2007.  Now what has that got to do with vomiting?  I know this sounds strange, but from the time I took Gleevec until I had my Gall Bladder removed, I would vomit off and on and sometimes go into the hospital with a low grade fever and vomiting.  I just thought it was because of the Gleevec/CML, didn't not occure to me to have Gall Bladder checked.  However one day I was at my primary doctors for an annual check up and I was having one of those awful vomiting attack all night and was exstremely sick in her office.  The primary doctor said Pam I think it is your Gall Bladder and Gleevec effects your organs, those were her words.  I actually had 3  different test done, remember this was back in 2007 so I don't recall every little detail, but the first test they said I had gall stones, then doc calls and says there is another test that will show up better, don't remember if that was the MRI or what, well this time they said no gall stones, go figure.  Now I am really confused and still sick.   But doc's nurse calls me again and says there is another test.  The test  was about 2 hours long, and toward the end of the test, they inject something into the IV, and said if you get sick this means there is something wrong with the bile duct not opening right into the digestive system.  Well I got sick, and at that point I was convinced I need the gall bladder out.  So I see a surgeon and have my gall bladder removed.  When I went back to the surgeon for my check up, he laughed and said do you want your gall bladder back?  He said the gall baldder looked like a perfectly good normal gall bladder, but according to the test the bile duct didn't open and close properly, something like that.  I really do believe there was something wrong with the gall bladder not working, because I didn't vomit anymore after that.

I know this all sound strange, (still does to me) and probably few people have had this happen, I really don't know.  I have never heard of anyone having their gall bladder out before for bile duct problems.  But I thought well I will put it out there, as many strange things can go wrong and it can be hard to figure out.,  Yours problem may have nothing to do with what was wrong with me, but you asked.

I hope your doc get to the root of your problem.  My oncologist and her nurse was schocked when I told them I had my gall bladder removed and that was why I was vomiting and sick all the time.  It seemed like when I went on Gleevec in 2005 and it was not an easy road to adjust to the Gleevec, but at the time it was the only TKI out for CML.  Anyhow most of my complaints were ignored by the oncologist.  Onc and nurse would say things like lets don't blame everything on Gleevec like it was All in my head or something, frustrating, thought I was losing it.  I don't know but it sure was frustrating to be sick all the time, and think, this is the way it is always going to be and people telling me how lucky I was!!  What is lucky about being sick most of your life, I couldn't quite get that!!  Won't even repeat what I was really thinking but life sure did suck!!  But the vomiting did stop after I had the gall bladder removed, after almost 2 years after diagnoses and Gleevec.

  Still on Gleevec, 300mg.

PamSouth

[siracuse@netsync.net]

Hi Pam,

Thanks for the info.  Unfortuantely for me, I had my gall bladder out years before I was diagnosed.  I do often have intestinal issues, because of the meds I am on.  I take Nexium every day for this.  Sometimes it helps, sometimes it doesn't.  I have had 15 surgeries on my back and neck for disc problems and some spontaneus cercerbral fluid leaks.  This has nothing to do with the gleevec or my CML.  I am just a very unlucky woman and live a quite painful life.  One failed surgery lead to more surgery to correct problems.  Its a nightmare.  In fact when I was diagnosed with CML: I was in the hospital because of a very bad vomiting problem and pain in my lower right side.  I have since, had my gall bladder, my appendix and a complete hysterectomy.  I am, I'm told very complicated.  So I don't always think it is the gleevec that makes me sick, or one of the other problems.  I thank you for you story.

[GerryL]

Are you vomiting within half an hour or so of taking your Gleevec, or does it happen at other times of the day?

I get a few different skin issues, initially I had the Gleevec rash which cleared up. But I also get folliculitis occasionally, usually get a three or four and then they disappear for six months or so. I have also had keratosis pilaris.appear on my face, though mine was skin toned. Didn't have any of these issues prior to Gleevec.