Itchy rash-Herceptin?

[tricia keegan]

Hi just wondering if anyone else has had this? I asked my onc and he said possibly herceptin but rare occurance.He said just to take an anti histamine which I hav'nt tried yet but if it gets much worse will have to.Sometimes I feel my whole body is on fire with this itch and red blotches/
Tricia

[juanita]

Where is your rash at? I started getting them on my arms and an antihistimine didn't cut the itch, not even the cream. I had to get a steroid cream from the doctor. Don't know what was causing it, I'd been on herceptin for about six months before i started getting the rashes.

[MCS]

I have frequent itches.

Hot flashes that itch. This is not typical menopause. So I'm assuming it's herceptin

If I take complex Vitamin B that has a high amount of niacin, it reacts with the herceptin. Did not have that before herceptin.

I get bug bite type of feelings along my back on the 2nd and third week after treatment. Can't figure out how to take care of this

If I shower with drying soap, I get itchy afterwards.

Here's how I'm dealing with this:

Take benadryl tablet if it's very bad.

I use Johonson's baby cream wash or any baby bath stuff.

Use sesame oil ( neutregena or copycat brand) on body. Or use Lubriderm lotion with Oat extract after shower. Or sue Johnsons baby lotion with baby oil in ti. Yeah, I know why shower then, if putting this gook later.

I am now taking half dosage of the vitamin b complex

Hope this helps. My doctor says same thing. Shrug his shoulders at these side effects.

XOXO

MCS ( maria)

[tricia keegan]

Thanks Maria for those tips and I also get it after showering as well as other times and usually on my second week after treatment.Juanita it started on my hands and wrist but now I get it all over my back trunk and feet even!They're just red blotches that last awhile but I feel hot all over when I get it.Think I'll have to try that steroid cream next time.The Dr says it is listed as a rare side effect but really did'nt seem too interested.After all she's not the one itching and scratching!!Thanks again:)
Tricia

[cherylynnie]

Tricia,
I asked this same question in April, I had a reaction after my loading dose. The itching started on Thursday, two days after infusion. Rash is listed as side effect. You can check out the link to the manufacture via this web site. Since my onc. hadn't seen this reaction before I have to go weekly now. I don't know if he will change me back to every three weeks or not. So far I had my loading dose 526mg, then 3 weeks later they gave me 25 mg to see if I reacted, then the next week they gave me 138mg, then last week another 138mg. Then I go tomorrow for the third 138 mg. I only had the itchy rash the first time, it was all over my trunk, especially along my scars(I had a tram flap reconstruction) and on my breasts. Heat might bring it on maybe that is why the hot water effects it. According to the Herceptin website 18% of 352 women who received Herceptin alone broke out in a rash. I think those numbers are right, but check out the website. I printed out the table and showed the onc. I think that is why he is being careful now.

[mts]

I logged on to complain about my itching... and BEHOLD! someone had beat me to it! I too have had this awful itching on my arms and inside elbows. I have tried EVERYTHING... so far, only benadryl tablets have made it better to where I do not scratch as much. I went swimming yesterday and a few hours later my arms felt like they were on fire from the NEED to scratch. I began using an ice cube -just rubbing it up and down until it completely melted. I did not dry my arms off and it worked! The itching stopped. I feel like a wimp complaining about this, but I see I am not alone. The itchiness is all over my back and upper thighs. Every month it seems like there is something weird going on. I suppose it is the Herceptin. I started it in July 2005 and the itchiness began last month. My doc also shrugged his shoulders. But thanks to this website, I know its more common than we think!

Maria (MTS)

[Unregistered]

My arms are SO itchy as well. I notice it when I have hot flashes (from Tamoxifin) but other times as well. The only thing that has helped so far is cold packs and Tiger Balm. Apparently the "cold sensation" you feel from these over rides the "itching" feeling that the nerves are experiencing.

If any one else has any other advice, I'd love it.

[MCS]

I also used a lotion called Sarna. Expensive in my opinion (apprx 14.99 for the brand, CVS in US carries its brand a bit cheaper)
This works. I use it also for chapped armpits.

I also use a cream called Vanicream- comes in a pot with a pump. I think that Walgreens carries the lotion. Thick and rich. No parabens, lanolin, dyes, fragance. It advertises on side panel that coan be used for itchy skin, icthyosis?, breast nursing, ulcers caused by perlonged bed confinement and orthopedic appliances. This is usually carried at the bottom of the shelf.

Although I dont use because it may have a bit of AHA, many derms recomend Amlactyn, carried at Costco and also at the bottom shelves at drugstores

Good luck

Vanicream says

[patz64]

I also am experiencing rashes. After my first round of chemo/herceptin I broke out with terrible acne on my face. After my second round, I got a rash on face and head. head was itchy but I thought that was just from hair loss. Also my hands were itchy. Had my 3rd round last week, and for last 2 days have had HORRIBLE rash...back of neck, inner arms near elbows and wrists, lower back, backs of thighs, behind knees and in groin area. SOOOOO itchy (except for the rash on abdomen...lots of small red spots but for some reason my belly is not itchy). I went to regular doctor today. he said it's either viral or allergic reaction to something systemic...possibly medicine (herceptin?). He prescribed steroids and benadryl. I hope it works because it is driving me crazy! We go through enough, do we have to be itchy too!?!?!?!?!

[Lani]

REQUEST--I started a thread on side effects of herceptin real or imagined several years ago (in the herceptin/tykerb forum).

I did this as drug companies are required to do post-marketing research ie, seek out if there are adverse reactions when the drugs start being used in a larger number of people of more diverse backgrounds than those included in the clinical trials prior to approval, but they do not seem to be doing so.

I have seen almost no signs that Roche (who bought herceptin) is carrying out this postmarketing research (I am not singling them out... I see little evidence that most drug companies are diligent in this requirement after drug approval) so I hoped if everyone put their complaints in and specified whether they were taking herceptin alone, with chemo, after chemo with/without antihormonals etc
that someone, someday could use the information in a way helpful to those for whom postmarketing research should be carried out.

Perhaps putting in a link on that thread to this one will help.

Thanking you in advance,
Lani

[sarah]

I went crazy with itching, cortisone creams didn't help. only thing that worked for me was lots of calamine lotion!!! looked pink but helped enormously.
good luck tricia
health and happiness
love sarah

[Kroesen]

I too am about beside myself with the rash and itching. Last week the oncologist mentioned that if it is herceptin, that I'd have to quit using it. Is there anyone out there that continued to use it with the rash? How is it going?

Just finished 6 cycles of TCH and I would really like to complete herceptin but nervous that I'll have to quit.

Are there any other drugs out there that do the same thing?

[Lani]

Have any of you noticed an increase in the cells called eosinophils when they test your blood while you are on herceptin? It is a type of cell often increased when there is an "allergic" type reaction to a drug.

Again, I wish the drug companies would follow through on looking for, investigating and reporting adverse effects AFTER the drug has been approved.

Not that the drug should be stopped because of itchiness, but patients should be aware and maybe they will find out it is the benzoyl alcohol they mix with it and not the herceptin that causes the itchiness, just as it seems to cause joint pains in some patients

[pmm10414]

I had rash and antihistamine made me drosy. My Onc had me using claratin because my nose was always running and ears itched. I used Eucerin calming bath oil and cream. It helped. I bought it at walmart.

[sarah]

I continued with Herceptin despite many skin problems, sometimes open sores, feet nails falling off or disgustingly yellow, breaking nails, etc. I was way too scared to go off Herceptin, I believe it's why I'm alive 6 years after my recurrence with invasive bc. Calamine was the best thing for me and sometimes a cortisone spray - can't get the spray in Europe but cortisone can only be used for short periods of time. put heavy coats of calamine lotion on, unsightly but works...at least for me. I wouldn't quit Herceptin before they think you should, too risky in my opinion.

[pmm10414]

Agree when you read prognosis for Her2 BC without Herceptin it is not worth the chance. My on told me that soon you will be able to get it as an injection instead of infusion. I wonder if that would change side effects.

[pmm10414]

Did you try benydrl. I took it at bedtime. It seemed to help me.

[Kroesen]

Lani,

My eosinophils is in the normal range. Wouldn't the carboplatin reaction have messed with those as well? I know I had a reaction to that. I turned blue and couldn't breathe.

I wish there would be a black/white answer. After my last reaction to carbo, I'm so nervous when my tongue feels numb and thick. I have had this reaction before but now I am super paranoid that I won't be able to breathe with one of the treatments. After the last treatment, I started breaking out more after about 2 hours.

[Kroesen]

I've taken Benedryl, Zyrtec, creams, aveno, and everything else that you can think of. I'd be happy to live with the pain and discomfort of the burning and itching if I knew that my throat won't swell up and make it difficult to breathe.

[LuckyLinda]

The constant itching is driving me crazy---my arms, neck, back and chest are all "rolled-in-fiberglass" itchy. My radiation oncologist identified a rash on my chest as "radiation dermatitis" and prescribed a steroid cream. I am also using a product she recommended called "Radiaderm"--a two-step system for skin care in the radiated area. However....I have a virtually identical rash on my upper back in a area that is not being radiated. The nurse said it wouldn't be related and didn't even look at it. I have little area that bleed when I rub it, although my nails are too short to scratch effectively. I am really, really tempted to use a nail file to scratch! I tried adding a Benadryl tablet---no relief. I'm wondering if this is a reaction from the Herceptin (last infusion about 11 days ago) or the radiation?

[Andrea Barnett Budin]

Hi! So here I am wayyy out from '98 Herceptin till '07. Around '03 I got major red rashy botchy on my upper arms. Looks like a bad sunburn. People always comment. (I don't go in the sun.)

I would get feelings of being on fire there. I'd run the hottest water I could handle on my arms and that would help. Kind of like what someone mentioned with cold. Gets your body's attention, away from the itching, which is an urgent sensation that needs to be quelled.

I also used Rhuli Gel which is basically camphor. Get the highest amnt of camphor you can find, sold in drug stores under their own brands. I also used Benedryl spray for itching when needed to boost my anti-itching.

I take 2 Benedryl at night. Must confess I do this every night. The itching subsided eventually, but the red rashy sunburnt appearance has never gone away.

No doc seemed interested. Onc not sure. Dermatologist says it's a vascular problem. Asked the cardiologist he doesn't know. Same with every kind of doc I've ever visited and they are many. It's a conundrum.

Never thought it was related to Herceptin, but so many weird things happened w/H that I just didn't think. Nails turned black and lifted exposing gooey yucky yellow crust. Dermatologist said not infectious. So I went for a gentle manicure and put red polish on them. (When I mentioned I wished it was easier to hide, like on my feet, it was pointed out to me that NO you don't want that. Then it would be difficult to walk. Point well taken.

Hope my info helps any and all...
Andi

[Andrea Barnett Budin]

Correction: For the record -- I was on Herceptin from '98 - '08. (Not '07.) Lost a yr there.

Been off Vitamin H for 4 yrs!

[Unregistered]

are your rashes in sun exposed areas only? ie not on areas usually covered by clothes?

Again, please be sure to post a link to this thread in the Herceptin side-effects real or imagined thread so someday if the drug companies (who I doubt are doing their post-marketing research diligently) or some researcher wants to look into this that thread becomes an all-inclusive database

Let's try to help this get figured out sooner rather than later!

[Lani]

don't know why the previous post by my listed me as unregistered although I signed in!

[tricia keegan]

I had forgotten I had posted or suffered this as I'm now seven years out from my dx but thanks to everyone for replying and I hope it helps someone else suffering this!

Lani I thought I had added it to your thread of herceptin side effects but may have forgotten!