Itching while on Herceptin and Perjeta
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I don't think the itching is from neuropathy. See what he thinks about taking a mild antihistamine. My doc recommended Benadryl, but it makes me a zombie. Some people take Claritin and that helps my itching - as well as the bone aches & pains from Neulasta..
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Hi Dhk- If you research this side effect of the H& P on this sight- you will find that many of us deal with the crazy itching on arms (and for me arms and back of neck )- ! I am 99% sure that it is the perjeta that is causing the itching. (I did herceptin in 2009 the first time I had breast cancer no itching- when it came back in 2016 stage IV, I am now on the H&P combo- itching like crazy) - I even marched into my Onc with all the posts printed & high lighted! (Because he just shrugged when I tried to talk to him about it.) One of my cancer doctors prescribed anti depressants as well when I talked to her about it, I gave them 2 weeks (because I was desperate ), and I just couldn't deal 1. with the thought of being on anti depressants when I am not a depressed person on any scale 2. and the "numb emotions" it gave me, PLUS it didn't stop the itching on me. I WILL tell you though getting off of them, (I just stopped cold turkey ) gave me a week long migraine and made me physically sick.. I will NEVER go down the road again. I find the itching effects me worse at night, if I get over heated, if I get stressed or upset- (it will start with the back of my hand, and then spread up my arm.) Also, I think there is a sugar effect (I am just grasping at straws ) It seems whenever I splurge on a root beer or an ice cream that night I am miserable.I gave up red wine because it seemed to make me itch- but do sip on a pinot grigio occasionally. (Girls gotta have her wine!) I do sleep with a cool gel pillow, and ice packs- and I take 1 Excedrin PM at bedtime which contains 38 mg of Diphenhydramine citrate (a little stronger then Benadryl-). I can't tell you how many times I wake up to bloody sheets and pillows from scratching myself while I sleep . I feel your pain, it comes and goes- (but mostly is there lurking in the background.) I find wearing long sleeve cotton soft shirts helps too- (plus it covers the scabs- yucky I know.) Girl, you are not alone, I feel your pain. If you have any ideas, please share! xoxoxox
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Hi Sandystrong- I feel your pain, please read my reply below to DHK- I have been dealing with itching on arms and back of neck for over 2 years now- I use the hairbrush scratch neck technique as well! I avoid the Claritin because of the "kickback" effect when you stop using it. I am sure it is from the Perjeta (or in combo with Herceptin?) Has this side effect been reported to Perjeta? Just wondering.
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Has anyone discovered any relief from this insane itching? I can’t handle it!!!!
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Soft ice packs strapped to my arm. Nothing else worked for me and I tried everything. Thankfully, the itch ended when I came off herceptin.
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Minus2 - I use children's chewable Benadryl .It's half the dose of regular Benadryl. I only take it at night - it makes me a little drowsy, not a zombie, and provides relief while I am sleeping.
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Scrunch - Thanks. Unfortunately even the children's dose just knocks me out - and provides the horrible dry mouth when I wake up. I took Claretin for a week as a trial. While it helped the itching, I had vivid dreams that woke me every couple of hours. Next try till be Zyrtec.
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I don't know if this will help anyone, but I've had the intense itching and stinging, open small sores only on the arms--tops and mainly around the elbows---ever since they added Perjeta (about a year and a half ago) to the Herceptin I had been on in 2009 then from 2012 until now. My Oncologist basically ignored my complaints about it and finally a I got a new Nurse Practitioner that had had skin problems and started me on a prescription Zyrtec that made me groggy for 2 or 3 days. So finally about 2 weeks ago she sent me to a dermatologist and he said it was NOT from the Herceptin/Perjeta but was brachioradial pruritus and to use Capzasin creme on it 2 or 3 times a day. It really seemed to help until I had another treatment yesterday and it was stinging like crazy tonight. I've applied the Capzasin several times and it helped a little then applied Sarna lotion (which he recommended another time) and that helped. I'm just so annoyed that there doesn't seem to be an answer and doctors seem to not want to say it is from the IV meds. I am considering going to my cousin, who is a wonderful dermatologist in a nearby town to see what he says. I've seen this on other sites so I'm pretty sure it is caused by the medicines but I'm no doctor. If I am lucky enough to find an answer I will repost later. Just a word of caution----be sure if you use the Capzasin cream you apply with rubber gloves--like they use in doctors offices and be very careful not to touch your face, eyes, mouth as it really burns. Also if the burn is too much whole milk, yogurt, sour cream were suggested on the internet to take away the burn (I used sour cream and it worked) and Icing helps. We have got to make our oncologists realize how MISERABLE this is. Mine looked at my arms and said "looks like you've been in a fight". A bit of sympathy and caring would go a very long way with these doctors---
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From my detective work it seems this is a reaction to the animal cell particles used in the process of producing monoclonal antibodies i.e. Herceptin and Perjeta. It is similar to a condition called serum sickness. As such it is like an allergy - a reaction to the foreign animal cells. As I am on these for life, I would be very grateful for any help that did not involve taking anti histamine or other pharmaceuticals. So many of us are suffering from this problem that oncologists can't keep denying it is caused by the treatment or brushing it off as a minor problem. I am very grateful to have these treatments but surely a little bit of work from the experts could make it better! A further purification process perhaps!
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The awful itching isdefinitely more of a nerve issue and not skin issue.My oncologist gave me Gabapentin and it is the ONLY thing that has worked! But keep in mind, you will probably need to increase the dosage. I started at 300mg per dosage, and 3 months in on the treatment, I am up to 1200mg per dosage. It is truly a lifesaver!
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The awful itching is definitely more of a nerve issue and not skin issue.My oncologist gave me Gabapentin and it is the ONLY thing that has worked! But keep in mind, you will probably need to increase the dosage. I started at 300mg per dosage, and 3 months in on the treatment, I am up to 1200mg per dosage. It is truly a lifesaver!
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The awful itching is definitely more of a nerve issue and not skin issue.My oncologist gave me Gabapentin and it is the ONLY thing that has worked! But keep in mind, you will probably need to increase the dosage. I started at 300mg per dosage, and 3 months in on the treatment, I am up to 1200mg per dosage. It is truly a lifesaver!
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ndrew31, welcome to Breastcancer.org and thank you for your post! We're glad that you've found us and hope you find the forums are helpful. We have removed two of your identical post you had posted, we guess was a mistake.
Let us know if you need help with anything.
Kind wishes to you,
The Mods
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Sorry - but my MO and my derm doc said it is definitely a skin issue for me. It is no better after H&P finished.
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We doubled my gabapentin (for other reasons) and it does nothing for the itching. I originally thought it was a mild Herceptin rash, but it's hard to tell which SE is from Herceptin and which is from Perjeta. Even though it's not one of the box warnings, the CLEOPATRA study listed itching as one of the most common adverse effects for people who had Perjeta (>25%) instead of Herceptin alone.
If you don't want to take bendaryl because it makes you drowsy, you might want to try the topical benadryl anti-itch cream. It's the same active ingredient - diphenhydramine. It usually gives me enough relief so I can sleep. Not perfect but it's the best I've found so far.
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Try Gabapentin. It really works. Ice pa is help too if you don’t want to use pharmaceuticals...
Does anyone know how long until the itch goes away? I went off the Herceptin temporarily for six weeks, and I still itch like crazy!
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It took more than 2 months for the itching to go away after ending chemo, but it did gradually get better.
Now after nearly a year of H/P the worst side effect is this insane incessant itching. I joined this site after finding this thread--someone else with intense prickly itching on arms, shoulders, neck that's also worse at night or when I get too warm!! My arms bruise from itching through a long sleeved lightweight cotton shirt or are a bloody mess without a barrier.
I haven't ever had any skin issues prior to diagnosis and have been to the dermatogist twice without any helpful advice--minimal temporary relief with topical creams OTC and prescription. My oncologist has sympathy, but no solutions. She does say it's probably a type of allergic reaction to the treatments.
I take Zyrtec every day, Benadryl at night, Aveeno on Loofah in the shower starting hot and ending cold, stay moisturized with Aquaphor or Cetaphil, use sunscreen and UPF clothing, take ibuprofen occasionally and always end up with an ice pack. Hoping to try other suggestions you all have listed!
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Welcome, Walkinntruth! Goodness, that sounds incredibly frustrating, we're so sorry you're experiencing this side effect. Hopefully one of the suggestions offered here can bring you some relief!
The Mods
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Thank you, cgull!!! I took Excedrin PM the last 2 nights because you said that worked for your nighttime itching--- And it really did help! (dropped the benadryl and took that instead) Still woke up a couple of times and was surprised to NOT be insanely itching! It was actually pleasant to fall back asleep! I pray that keeps being effective!
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Hey walkinntruth ! I am so glad that that Excedrin Pm helped- I usually take just a 1/2 of a pill and still sleep with my cool gel packs along with my cool gel pillows (they rock and are the best- I will get the brand name if you are interested, my mother bought them at Belk) - there are nights that I can tell I will need whole pill instead of 1/2 (know yourself, your emotions and you can tell with time) and I will take a whole pill with out feeling bad about it. I AM sure that there is a "stress' link with the itching as well as a "sugar" link to my itching too- a plus side, I have lost almost 20 lbs since dropping most sugar and cow milk products and sticking to eating organic foods - but I still indulge in some wine/ and chocolate on occasion- a girl has to live you know! I would say my itching is down my 50%- but there are times when it is over the top still....I feel all of this is linked, the herceptin, perjeta, the emotions in your body, and cancer....which brings on the itching as side effect....sigh....we do what we can do, but hey, we are all still here, and living life....namasta! Give us an update on occasion ,I don't comment much, but I do read everything!
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Hi Josalive,
My wife is stage 4, on H&P and going crazy from the itching. Did you drop Perjeta for good and how did you find it?Any advice would be greatly appreciated.
thanks,
keely0 -
Hey Everyone,
Still following, still itching- but not as severe as it has been - have been eating as clean as possible (I think sugar makes it worse), sleeping with my ice packs, and still taking a 1/2 tab of Excedrin PM to keep those late night scratch attacks at bay. BUT- (I have noticed this once before and told my doctor) I have been on an antibiotic (amoxacillian ) this week to treat a sinus infection/ sore throat - AND I HAVE NOT ITCHED AT ALL- NOT EVEN A LITTLE! Honestly, there is some kind of connection here...I get my next H&P infusion on Wed and get the results from my latest PET scan (no news is good news right? It has been a week, and they would have surly called me if there was a problem....right???) I will talk to my Dr. about this AGAIN- and point out the antibiotic connect AGAIN....
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Hello
I have been taking H and P for over 6 years and have trief everything!
The best thing I have found to work is an antiobiotic cream followed by steroid cream.
I read an article that thought that eczema was thought to be caused by a baterial infection breaking through damaged skin and so a new approach was to use antiseptic to kills the staph infection and then a steriod cream to repair the skin.
I usethe antiseptic cream with lidocaine ( to numb the area) and keep treating even after the itch stops.
Also, no sun.
Hope this helps, i have tried many things over the years!
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Hi I had terrible itching as I finished my year of Herceptin and Perjeta. The only medication that helped was a prescription cortisone cream called Triamcinolone. Finally after 2 months being done with them, the itching subsided, whew. Give it a try.
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Just finished 5 treatments of H&P. The itching is exactly as described here. I take benedryl at night. I’m going on TDM1 next month. I was on Herceptin for 2 years with no itching. I think it has to be Perjeta for me. My onc just suggested Claritin for bone pain fro NEulasta. I’ve been doing that for years. She never understood how debilitating that bone pain was. Sometimes I wish they all had to experience the side effects just for one month. But that would be cruel. I wouldn’t wish that on them. They need a course in listening in medical school.
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Believe it or not, try Ibuprofen it worked for me....
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My wife has been suffering from this exact insane itch since 2014. She basically lives on a combination of Aspercreme with Lidocaine mixed with the Walgreens generic version of the same. She applies it with vinyl exam gloves at least 8-12 times per day (24 hours). It does give her temporary relief and eliminates the need to scratch her skin. It is an expensive routine but it's making her situation somewhat less miserable.Reading that the itching was suppressed while on antibiotics is encouraging and she is going to try that route as well.
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Hi Samlo, things that help me- ending showers with a cold blast, taking an excedrin pm before bedtime (just 1/2 to 1 tablet depending how severe), sleeping with cold gel packs and applying to spots as well as cool cotton pjs, taking an anti inflammatory OTC (like advil or tylenol ), I also have severely cut out sugar, and milk products (I noticed one day after drinking a root beer that my itching was off the hook.) Controlling stress (yes, hard to do when finding cancer, but yoga, deep breathing, music etc... whatever works for you) ...also like I said I noticed over several times thru the years that an antibiotic completely stopped the itching! NO DOUBT - but when I talk to the doctor he doesn't comment much on it....sigh.... hang in there....
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