itchy prickly skin....

Strong65

I am getting herceptin & perjeta every 3 weeks, as well as taking femara... my arms get what i call hot spots... my forearms itch terribly. I also have a prickly sensation on my head and arms.. does anyone else have this? My onc hasn't had much response when I tell her about it. ..

Meow13

I am on exemestane and my forearms itch like crazy.

DaisyQ

I had the prickly, itchy forearm thing too. It seemed to be on the same spot (top of my left forearm), but it wasn't constant. That's the port side..? It started after my 4th TCHP tx. It resolved a few months after I completed the TCP part of chemo. No issues while on Herceptin only infusions.

I'll be interested to see what others have to say

JenPaw

I'm late to the conversation but thought I'd post just in case other women are looking for help with the awful burning, stinging, hot, prickly Perjeta itch! It started on my left arm and then jumped to my right arm, and then the back of my neck and across one shoulder. It's horrible. And if you scratch it, it just flares up. I was on a clinical trial to get more doses of Perjeta but had to quit because of the skin problem. I've been off Perjeta since November 2015, but the itch isn't gone! It's toned down a bit but is still there. For months I dealt with it by icing it to numb it. Lidocaine patches worked ok too. I finally got in to a dermatopathologist in the skin cancer clinic. He biopsied my skin to see what was going on. He said the skin is inflamed. He prescribed TRIAMCINOLONE ACETONIDE ointment 0.1%. And it's a miracle but it worked!! I've tried every other cream, topical solution, gabapentin, minocycline.... This is the first thing to relieve the itching. He said I'll just have to use the ointment until my skin recovers. I hope this info helps someone out there.

Hez

Hi there,

I'm so happy to finally find some other people who are suffering from the same problem as I thought I was going mad! Oncologist suspected it was the perjeta rather than the Herceptin but didn't have much experience with this horrendous itching so couldn't do anything much to help. I finished my herceptin/perjeta regime at the beginning of December 2015 and was hoping that the itching would have gone by now! it's on my arms, chest area, shoulders and neck (seems to be all the areas exposed to sunlight?) so thought it was maybe a reaction between the drugs and UV or something? it's exactly like everyone describes, itchy, then the burning, stabbing, prickly needles sensation starts a few seconds after you scratch it and you feel like you can't stop! just awful! This cream looks promising, have noted it down and will mention it to the oncologist at next appt. Anyone out there a bit further down the line? does it eventually subside and go away?? Ps diagnosed with early HER2 pos breast cancer in Aug 2014, had single reconstructed mastectomy with subsequent FEC then docetaxal treatment followed by herceptin and perjeta for a year. (Kaitlyn study) thankfully was caught really early so hopefully won't return!!

rainnyc

Add me to the list; thanks for posting this! I've been on Herceptin/Perjeta since May, both before and after surgery (stage III, off protocol, unusual insurance situation that could change at any moment). The forearm and shin rashes started during rads in December, and I assumed it was my body reacting somehow to radiation treatment. But I've healed from the worst of the rads and yet the forearm rashes continue, though not as bad as they were. My skin feels dry and parched all over, though I'm slathering on the lotion.

It's hard to know sometimes what is a side effect and what's not! But this is really helpful; I'll mention it next time I see the oncologist.

Moderators

Hi ladies! Welcome Hez! Here you are some tips on Managing itching from our main site, if it helps!

Best,

The Mods

newbie20111

Hi Itchy Forearms while on Perjeta/Herceptin combo:

Moderators:This is not ordinary itching, and regular itch suggestions do not work.

This appears to be systemic, part of a skin reaction sensitized by taking Perjeta/Herceptin over a long period of time.

My itchy skin reaction was precipitated by a combination of factors:

CT scan with contrast ( every four months)

Recent ECHO (large white leads from ECHO machine caused bullet like rash on my chest so now I am adhesive sensitive)

We eliminated the benydryl infusion premed at last two infusions after having it with my Herceptin/Perjeta infusion every three weeks for a year and a half ( Metastatic breast cancer currently NED), and took a Perjeta vacation for the next two infusions.

Regular bug bites : Flea or mosquito or both ( very itchy and did not heal correctly. Spouse also had slow healing of his bug bites). Super bugs???

My bug bites did not heal properly setting off a systemic itching on my left arm ( port # 2 side), and itching a bit of an abrasion on my wrist from energetic lymphedema therapy.

Latest potion that seems to be working:

Boiron Avonoc ointment ( I use it for my Hemmoroids!) I put it in the refrigerator...Spread it on my arm. removed my sensitive skin bandaids..they were making it itch more. This seems to be working. Put one of those soft lymphedema stretchy cotton sleeves on it instead of a bandage. ( Do not use a regular lymphedema sleeve). Cotton sleeve breathes..A soft cotton long sleeved shirt might do the trick as well, but the cotton sleeves are washable and absorb the excess ointments and cream and multiple bug bites are a pain to try and keep bandaged.

Other things I tried before the Avonoc Ointment:

Oral Benydryl ( makes you sleepy and can be habit forming). The itching was so bad one night it woke me from my sleep!

I also ran cold water over my arms and that worked for a few minutes.

Benydryl cream, various itch type creams like gold bond, eczema types

Hemorroid medicated wipes ( soothes for a minute)

Silver wound gel ( also kills the good yeasts and bacteria)...Seemed to help the bug bites heal.

Arnica creme

And finally sterile manuka honey ointment ( Rite Aid carries it) (cover with a bandaid..a bit sticky) which worked great to heal my bug multiple bites. More convenient and more sterile than regular manuka honey.

manuka honey also cleared up my abrasion on my lymphedema arm.

Bottom line, don't skip the Benydryl premed or you might be itchy for a very long time. Might be itchy anyway, but I believe it is the Perjeta. ( I was on Herceptin for a year in 2012 and just had the "normal" Herceptin issues. No itching, no slow wound healing.)

Perjeta seems to cause the skin to lose that protective biofilm(?) or protective skin cells on the skin. I noticed as long as I keep some type of cream or lotion on the skin I do ok for a while. I am 66 and have been on cancer treatment since 2012 with two periods of NED. Currently NED. ( NED = no evidence of disease on my CT scan.) I never had this type of itching in the past five years of cancer treatment. This is like poison ivy itching..really really itchy at times.

The itching is irritating, but the slow wound healing may be more problematic for some folks.

Moderators, could you add this to Stage 4 , Perjeta/Herceptin side effects.

This is not normal itiching. This is the effect of long term use of two monoclonal antibodies, Perjeta/Herceptin for Her2+ Metastatic Breast Cancer and elimination of premed Benydryl.

Thanks,

Not so Newbie...