Desperately Need Relief From Rash!

lv2crft · July 2014

Has anyone found lasting relief from a rash caused either by Herceptin or Perjeta? Even though my last Herceptin/Perjeta treatment was 4 weeks ago, I've had this rash for over 6 weeks, with NO improvement at all (on the contrary, it keeps getting worse, spreading to more areas of my body). It consists of ferocious pricking, stinging, burning and itching---as though someone were jabbing my skin with napalm-tipped needles---not just where the actual rash bumps are, but around and inbetween them as well. It keeps me from falling asleep, and wakes me up (max 4 hours of sleep), and I also have 2-3 bouts during the day (anywhere from 30 min. to 3 hours long). It is maddening, and what's scary is that I've got to have Herceptin every 3 weeks until next summer.

I have tried all manner of topical applications (and I've also been taking Benedryl for insomnia every night for 21 years), but even if they work for a while, after a few days, the rash becomes inured to them. I couldn't get an appt. with a dermatologist till the 8th of August.

My other question is: those of you who had the rash, how long after you finally finished with Herceptin did the rash finally start subsiding?

Any suggestions would be HUGELY appreciated. Thanx in advance.

lkc · July 2014

you need to call your Onc ASAP .

Moonflwr912 · July 2014

I second that. Call your onc. It could be other things than from your chemo or Herceptin. It could even be shingles. Call your doc and tell him you can't live like that.

Much love

lv2crft · July 2014

{sigh} The whole reason I came here to get help is bec. my onco is a DUD! She doesn't care diddlysquat about what's going on with me: she told me to go to the E.R. (after first shunting me off to the center's NP, who misdiagnosed shingles---this is NOT shingles; shingles are on one side of your body and they HURT; this is in all kinds of places, but it does NOT hurt, nor did it respond to the anti-virals the NP Rx'd for the purported shingles. On the contrary, the anti-viral made me sick and horribly depressed).

But thanx anyway.

SpecialK · July 2014

lv - can you see your primary care and maybe ask about some steroids? You can take them orally and topically. I am a person who has a propensity toward rashes and this is what I am usually prescribed - I had rash issues during chemo, but not on Herceptin only. It might help in the short term until you can see the derm.

agness · August 2014

Are you having your blood checked still before each treatment? Has anything shown up out of range? Liver problems can sometimes manifest with a rash symptom.

I was told by my Chinese medicine doctor to not eat seafood during chemo because it could cause rashes. I was just looking it up and some fish can cause vitamin B1 depletion, shellfish also contains a lot if copper which us cancer gals seem to run high in.

My copper and zinc levels were monitored throughout my treatment by a naturopathic oncologist and my copper level was high and my zinc level was really low. I've been taking 4x the RDA of zinc and cutting back on copper-containing foods (no coffee, no chocolate, no shellfish) and it is still taking a while to elevate my zinc level.

I have found this article helpful about copper and zinc metabolism and associated conditions, it does mention rashes:

http://drlwilson.com/articles/copper_toxicity_synd...

Digging around more about the B1 issue found this article which mentions too much or too little of certain b-vitamins can cause rashes. Any chance you are getting too much b-vitamins through your diet or in supplements?

http://www.livestrong.com/article/485790-side-effe...

Do you live somewhere near to someone who does integrative oncology or naturopathic oncology? They might be better able to better assess your symptoms.

Sending hugs and I hope you get relief soon.

Basia · August 2014

I have a perjeta rash on my face, kind of looks like acne. My Onc's PA gave me a script of hydrocortisone cream 2.5 mg. She told me if this doesn't help, I should go to my dermatologist.

lv2crft · August 2014

SpecialK, Agness and Basia, thanx for your replies, and plz. forgive my delay in replying: on the 8th, I had a complete mastectomy with a lymphectomy on the left armpit as well, then on the 9th, while I was still in the hospital, my mother got admitted to the ER and then the hospital. I was discharged the afternoon of the 10th, and that very evening, I had to start tending to my mother's needs. She was suffering for 2 weeks, back and forth between the nursing home and the hospital, and finally passed this past Friday. So, all of that to say, I've been "out of breath" (and out of time/energy) ever since the 10th. Now the stress continues as I try to dissolve her "estate" (as if there were any assets {chortle}---she lived hand to mouth, just like me).

I did ask the dermo for some better cream than the low dose cortizone a previous GP had Rx'd, but even that better salve didn't cut the mustard. Even tho a lot of the blisters are looking like they're healing, still, I get bouts of the severe pricking, stinging, burning and of course itching. I wish they would limit themselves to the daytime, so they'd not wake me or keep me awake, which they love to do ("courtesy" of Murphy... {scowl}). Yesterday, at my first surgery follow-up, I was able to get permission from the surgeon for an ingestable steroid: the dermo had been loathe (when I saw him before the surgery) to Rx anything like that, for fear of jeopardizing the healing of the mastectomy.

I am hoping the Perjeta, and not the Herceptin, was the culprit, bec. I've got Herceptin treatments every 3 weeks still until next summer. No more Perjeta, but who knows whether the FEC (coming up for 3 more rounds over 9 weeks) won't cause a rash (or worse?) even if the Herceptin, by some miracle, doesn't.

wifessupport · August 2014

IV2CRFT,

You should request your oncologist to do a biopsy of the skin. My wife had a similar rash 4 months after her treatment finished around her breast area and it turned out to be loco-regional recurrence to skin near the breast area. Yours might not be the same and could be shingles or acne but get it checked up as soon as possible. May be see a dermatologist, they can do a punch biopsy of the skin.

Beatmon · August 2014

I had my first tx yesterday of taxotere, perjeta, and herceptin and have itched on my face, arms and chest ever since I got home. Took 100 of Benadryl and a dose of Claritin, getting ready for nuelasta this afternoon. My face appears flushed as does my chest. Hope that I don't have this to face for long term. I was 2 years out from bm and accidentally found lung mets on a ct scan of a breast implant.

lv2crft · August 2014

The onco is a dud, as I've written elsewhere: she doesn't give a hoot about what ails me. But I did have the dermo do a biop and it came back as just some sort of dermatitis. But it continues to hound me, even this far along, and this far out of chemo. I dread the chemo rounds coming up, and then the Herceptin for even longer.

lv2crft · August 2014

Beatmon, I wish you the very best, having to go thru this stuff again when you were clear. Life is sure not easy, eh?

Blessings,

L2C

Beatmon · August 2014

Thank you. I'm praying for grace.

carryon1 · May 2016

I have been on perjetta and Herceptin for three years, and since I am stage IV, it will not be possible for me to be off ever. The itching, stinging, burning never stops. I've tried steroid creams, and the dermo also tried me on a low dose anti-depressant medication. Nothing works long-term. Wish there was someone who has had success with alleviating this side effect.

newbie20111 · August 2016

Folks with rash from Herceptin/Perjeta

I have been on Herceptin/Perjeta for a year and a half after Doxetacel/H/P for four months with excellent response. I get a reduced dose...I am NED for METs BC. Last cancer in 2014 was skin mets covering on my cancer side chest, ( radiation and mastectomy site) axila nodes, subclavian. The D/H/P combo worked great. A while later in 2015 I did get cellulitis which cleared up immediately on an antibiobic.

In July 2016 I came off a benydryl IV for two chemo cycles, and dropped perjeta last cycle. Both Herceptin/Perjeta on reduced doses. ( Taking a chemo vacation).

Two weeks ago, got bug bites ( either chiggers,fleas,or skeeters) like my spouse.. His healed finally, but were very very itchy, mine semi healed, then morphed into some alien rash on the bites on my left arm.

...My new PCP thinks it is a shingles type rash ( I am 66) . I have had a shingles shot. I also recently developed an adhesive sensitivity after a routine ECHO. Those big white leads...Avoid them. Now even bandaids make an impression unless I use the sensitive kind.

Several things helped rash to heal:

Small Ice pack on each bite.

Benydryl spray and oral benedryl at night. I tried Claritin kids during the day.

I used Avonoc hemorrhoid ointment ( Boiron) that I keep in the refrigerator door. The combination of the cold and the ointment is very soothing and healing. I also had the same rash on a small abrasion on my lymphedma wrist on the other side. Weird.

I tried a bunch of other creams etc including manuka honey which did help clear up the rash but is sticky. Comes in a sterile form at Rite-Aid. Very soothing but wear longsleeves.

I was on Herceptin for a year without Benydryl I think back in 2012. No problems except the runny nose and thin hair. Absolutely no rash. It has got to be the Perjeta.

Do you suppose the formulations for Herceptin have changed since it is going off patent?

There is a scientist named Dr. Jeffrey Cohen,MDat NIH studying monoclonal antibodies. Maybe he can research is very imprtant topic which makes our lives miserable at times.

Not so Newbie!

Desperately Need Relief From Rash!

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