10 replies to this topic

[Cmlmissunderstood]

Hi, new to Los, cml six years, sixth tiki...started Iclusig, aka ponatinib...I've been on this for six days and rash began on cheeks, now all over arms, back belly, breasts, scalp, and worst red hot raised on face. Saw nurse at my clinic, who said to her a rash was blisters weeping?!?!?! Really?!? I feel completely unheard, she asked if I had been in the sun and was just hot, that when she goes outside for her break, she gets red too....my friend was with me, who stood up and told her that I was near albino from all the tki's and pigment loss, that he could see the rash, and feel the rash, and had watched it progress with the Tasigna and we wanted to get some help before it got that bad again...I've been using Benedryl, hydrocortisone cream all over, Aveeno baby wash and Aveeno baby lotion unseen tee, also a face wash from Eucerin, with no relief. They pretty much dismissed me...the last time while on Tasigna, my daughter took pictures each day of the progressing rash..my doc would not help...we tried to show the doc and nurse the pics, they rolled their eyes at me and again, I went home in tears,,,,I'm a hospice nurse on ssdi until we get my treatment under control, but I feel misunderstood, unheard, and pretty much dismissed :-( what do I do? I'm considering just throwing in the towel and letting my cml take its' course.....I'm so tired of fighting with my hem/onc "team" ...where's the team??? Anybody else have this trouble? If so, how did you handle?

[Tom1278]

I'm sorry you are going through this.  I can't speak to the issues with Iclusig, but it sounds like you need a new hematologist.  You need someone you can have a positive relationship with who truly cares about your concerns and side effects.

[Cmlmissunderstood]

Hi Tom, thanks for reply, and thanks for validation of my feelings, I feel so sad about my hem/onc and team, I ve gotten to the point where I dread going and sometimes I know I need to be seen for something, like maybe I'm having fever and I dial phone to clinic then hang up cuz I'm thinking to myself...is it worth it? They'll prob just tell me to take more Percocet ,,,,I looked for new hem/onc online but that's how I found current one and his profile sounded soooo great, besides looking online, where else could I try....I don't have a regular family doctor...thanks again, hope things are as good as they can get for you Tom, and hope you have a nice weekend. ;-)

[ChrisC]

Hi Gina,

May I suggest that you see a dermatologist? The onc's concern is the CML, and the side effects are . . . not what they are taught how to treat.

If your PCP will refer you to a dermatologist, you will get help for the rash.

TKI rashes are a known effect, and there are various things to try (my Gleevec rash in 2008 was treated with Prednisone for a few weeks).

On the subject of changing onc team: you deserve the very best care! Keep focused on that and you will find a much better fit with another onc.

If you give your general location, perhaps others here on the board have experience and suggestions for a good CML specialist in your area.

Good luck!

ChrisC

[August1]

Hi Gina,

I am really sorry to hear what you're going through. My feeling is that your oncologist/hematologist team should be one of your most trusted advisors. If your current team is not listening to you I would suggest finding another specialist. It's your life and you deserve better.

Regarding the skin issues, I've had some rashes while transitioning over to Sprycel and they were treated successfully by my PCP, although it took a couple of different medicines before finding the right combo. TKI rash is pretty common from what I've seen on this board, but in all cases, you have to have a medical team who is on your side and advocating the best for you.

Hopefully your counts are good and you can find a treatment soon!

Best wishes.

[SUE]

I've been on Gleevec for 4 months.  About 6 weeks ago, I developed a rash that spread to my whole body.  It is very, very, very slowly getting better(the dermatologist prescribed a cream that was stronger then hydrocortisone).  I think the dermatologist did not want to prescribe Prednisone because he was unfamiliar with possible interaction with Gleevec.  The oncologist told me I could either live with the rash or switch to another TKI.  The Gleevec seems to be working, and I didn't want to switch to another TKI(I know they all have side effects) without trying other ways to deal with the rash.

Next week, I have an appointment for a 2nd opinion with a different onc.  I kind of think that the oncologist should be the one to manage the side effects, since he or she should be more familiar than a dermatologist with possible interactions.  Has anyone had experience with medications  that controlled an extensive rash?  Did you have to go off the TKI while taking the medication for the rash?

Thanks very much,

Sue

[Joy_in_Phoenix]

I was just taken off Tasigna after they incfeased my dose and in 6 days had a rash covering my legs and torso and back. Since the rash happen so fast they decided to have me discontinue the TKI. I am very concerned with what they decide to put me on and its side effects though. -

[ChrisC]

Hi Sue,

My onc at first said that Gleevec didn't cause my rash. A week later he saw it had really progressed over my entire body, and he referred me to the dermatologist, who consulted with him re possible interaction of Gleevec and Prednisone.

He had me continue with Gleevec while on Prednisone, and I was started at the same time with a diuretic for the edema, which was also a side effect of Gleevec.

Both medications dealt effectively with the side effects and brought me back from being swollen-up-red-blotchy-person-on-Gleevec, and I was soon able to discontinue Prednisone by tapering down over the next few weeks. The diuretic had its own side effect that I had to figure out for myself months later, after suffering my hands and feet swelling up and the skin bursting: bleeding and very painful. Finally I figured it out when I stopped taking the diuretic . . . actually, it was confirmed some months later when the edema got bad again and I restarted the diuretic: my hands and feet repeated the painful swelling and bleeding — I got it!

I'll just say that when I switched to Sprycel I never had a rash or edema, or even any headache or other discomfort right after switching (my fatigue was debilitating however, as it had been on Gleevec). We're all different and our response to the TKIs is likely unique, though by asking others we can learn much of what to do and what did or didn't work for others.

Best of luck with the side effects. Give it some time, and if your quality of life continues to be off, please consider trying another TKI. Finding the TKI (and maybe soon some combination of TKIs will be through trials!) that works best for you is worth finding!

By the way, there are plenty of older stories in the archives of folks being disappointed that their oncs would brush off reports of side effects, though less and less these days as there are several options to try, and the oncs are learning to listen more and suggest trying other TKIs.

ChrisC

[SUE]

Hi Chris,

Thanks for the reply.  I might wind up having to switch TKI's, but at this point I'm hoping to stick with Gleevec, I'm planning to move to another state in  a couple months, and I don't really want to change meds now unless absolutely necessary.  I am glad to hear that Prednisone worked for you.  I'm going to start another message dealing with rashes and Prednisone, since I do want to find out as much information as possible before I go for a second opinion.

Thanks,

Sue

[Cmlmissunderstood]

Thank you all for your suggestions.  At last appointment, Tuesday, sept. 10, I went in for labs, a nurse came and took a quick glimpse at my face then felt my back and declared the rash GONE, after five days off Iclusig.  Since the five days off, I've had debilitating pain in my bones and joints, received a voice message from nurse at my clinic that my hem/onc wanted to rechallenge the Iclusig and that it appears the rash was not from the Iclusig?!? Omgoodness!!! I'm so incredibly frustrated...my family has watched as the rash from this TKI and the TASIGNA caused a horrible rash...they watched as it grew redder, covered more body surface, and got itchy and thicker...they also watched as each day off the TKI's with hydrocortisone cream doused all over improved each day...PLEASE... Can anyone help me understand what the hem/onc is thinking? Besides that I don't know my own body and that I and my family are not good judges of what they objectively witness and what I subjectively report?  I'm falling into a funk, kind of depressed feeling, doubting my own good judgement....I live in between Madison and Milwaukee Wisconsin, my team is in oconomowoc currently...I want to find new team, but how? The way I found this current team, was online reading their philosophy and history of the hem/onc's and clearly this is like blindly reaching into a brown paper bag not knowing what's really inside....anyone? Please....I'm desperate..

Thank and hope you are all doing well...remember world CML day on 9/22 like the Ph chromosome ;-)

[ChrisC]

Hi Gina,

Hang in there, it is going to get better!

See if this link offers any help:

http://www.nationalc...cml-specialists

Good luck!

ChrisC