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Topic: Itching while on Herceptin and Perjeta

Forum: Stage IV and Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Mar 2, 2016 07:50AM

sandystrong wrote:

Hi! I'm wondering if anyone can help me with this severe itch that I have that I feel is due to the Herceptin and Perjeta that I receive every 3 weeks.

I am on Claritin and Benedryl. I have tried creams and steroid creams (which my Dr's allow me to use sparingly) and also oatmeal bath.

Sometimes I have to scratch my skin with a brush because I'm so itchy! Almost feels like little bites on my arms and back or prickly pins.

I recently did an experiment with my cream that I use for neuropathy on my hands. I applied small amount on my arms and wrists. I feel as though it may have worked.... Hard to tell bec it was the last week before chemo so it could have been that some of the side effects were getting less?

The problem is that there is Nifedipine and Gabepentin in the cream and my BP dropped to 70's/ 50. Dr. Prescribed me an oil based low 0.01% steroid prescription and low dose perdenisone for 5 days....

Maybe it's helped a little... Was wondering if anyone has anyone her suggestions?

Does anyone feel this itch could be a nerve thing or do you feel it's more allergy type reaction?

I would really appreciate any advice/opinions :)

Dx 7/18/2013, IDC, Right, Stage IV, metastasized to bone, Grade 3, ER-/PR-, HER2+ (FISH) Chemotherapy 7/23/2013 Other Chemotherapy 7/23/2013 Other Surgery 1/3/2014 Lymph node removal; Mastectomy; Prophylactic mastectomy; Reconstruction (left): Nipple tattoo, Saline implant, Tissue expander placement; Reconstruction (right): Nipple tattoo, Silicone implant, Tissue expander placement
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Mar 2, 2016 09:05AM Fitztwins wrote:

i have minimal itch, thought it was dry skin/weather.

Enjoy Every Sandwich. Dx 12/12/2004, IDC, Left, 3cm, Stage IV, metastasized to bone/lungs, Grade 2, mets, ER+/PR+, HER2+ (FISH) Surgery 1/18/2005 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Free TRAM flap Chemotherapy 1/31/2005 AC + T (Taxol) Radiation Therapy 4/30/2005 Breast, Lymph nodes Targeted Therapy 5/31/2005 Herceptin (trastuzumab) Hormonal Therapy 12/31/2005 Femara (letrozole) Hormonal Therapy 6/1/2008 Aromasin (exemestane) Targeted Therapy 6/30/2008 Herceptin (trastuzumab) Hormonal Therapy 6/14/2013 Arimidex (anastrozole) Targeted Therapy 9/4/2015 Perjeta (pertuzumab)
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Mar 2, 2016 09:37AM - edited Mar 2, 2016 09:37AM by leggo

Hi Sandy. I got itchy skin with several treatments, including Herceptin. I've never had Perjeta. I FINALLY figured out it was liver toxicity (usually reversible) from the actual treatment. Docs were insistent that it wasn't from treatment and not very helpful, other than prescribing antihistamines and ointments.I had to figure it out on my own, so I asked that my liver enzymes be tested after treatment and they were always through the roof and settle back down later. Liver issues can cause itchy skin. I suspect that they never put the two together because blood tests were always 2 days before treatment when everything was fine. Maybe you can ask for the test when the itch hits and have blood drawn just then to see if it's the problem? If you need more info, please Google " liver itchy skin" to get more detailed info. My phone won't let me add any links for some reason. Hope you figure it out. I know it can make you crazy.

"Once more into the fray... Into the last good fight I'll ever know... Live and die on this day... Live and die on this day." - The Grey
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Mar 2, 2016 09:39AM Moderators wrote:

Hi Sandy and welcome to Breastcancer.org!

We're sure you'll get lots of great advice from the other members here shortly. In the meantime, you may want to check out the main Breastcancer.org site's side effect page on Itching for some tips to help manage this uncomfortable side effect.

We hope this helps! Please check back in often and let us know how you're doing!

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Mar 2, 2016 01:34PM josalive wrote:

Hi Sandy -

I had terrible itching on my arms while taking herceptin and perjeta. It was horrible and to the point where I had open wounds all over my arms because I had itched it raw. Luckily, I found out that it was actually being caused by some of the supplements I was taking and the only way I found out was because I went on vacation for a week and didn't bring my supplements and it went away and as soon as I got home it started up again. I stopped taking everything and it cleared up. I introduced one back at a time and I think I found it to be the mushroom supplement I was on. Now that I've cut it out I don't have the itching and my WBC count went way up! The nurse thinks it was suppressing my immune system (the exact opposite of what I was taking it for). Hopefully you can find the cause or at least get some relief if it is the H & P causing it. My doctor did prescribe a powerful steroid cream that seemed to help a little. Good luck!

Diagnosed a day after my 35th birthday. Three children under 5 and a wonderful husband. Lots to fight for! Dx 3/5/2015, IDC, Left, 2cm, Stage IV, metastasized to liver, Grade 2, mets, ER-/PR-, HER2+ (FISH) Chemotherapy 3/9/2015 Carboplatin (Paraplatin) Targeted Therapy 3/11/2015 Herceptin (trastuzumab) Targeted Therapy 3/11/2015 Perjeta (pertuzumab) Chemotherapy 3/11/2015 Taxotere (docetaxel) Surgery 8/2/2015 Lumpectomy: Left Radiation Therapy 8/27/2015 Whole-breast: Breast, Lymph nodes
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Mar 2, 2016 05:16PM sandystrong wrote:

Thanks so much for the responses so far. The only supplements that I am taking at this time are vitamins. I do take Benedryl and Ativan at night for itch.... I'm not sure it really helps. I will ask my Dr to check my liver enzymes during the itch. I do agree that when I get my blood drawn the morning before chemo my itch is better! So maybe the liver enzymes are elevated during the itch? What did your Dr do about that?

I have tried coconut oil and all kinds of creams. And yes, I have scratched my skin open which I try so hard not to do:(

I will also read some of the recommended articles.

Thanks :)

Dx 7/18/2013, IDC, Right, Stage IV, metastasized to bone, Grade 3, ER-/PR-, HER2+ (FISH) Chemotherapy 7/23/2013 Other Chemotherapy 7/23/2013 Other Surgery 1/3/2014 Lymph node removal; Mastectomy; Prophylactic mastectomy; Reconstruction (left): Nipple tattoo, Saline implant, Tissue expander placement; Reconstruction (right): Nipple tattoo, Silicone implant, Tissue expander placement
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Mar 3, 2016 12:32PM leggo wrote:

Sandy, unfortunately there's nothing that my onc could do. He did say though, that at a certain bilirubin level (that was the culprit apparently) he wouldn't do treatment. I don't remember that number. I'm sure most oncs follow the same protocol so if you ask, maybe yours will tell you? I did reach that number :( As for what stopped the itch.....nothing, seriously. 'Bout made me insane....I wanted to crawl out of my skin. Keeping you in my thoughts.

"Once more into the fray... Into the last good fight I'll ever know... Live and die on this day... Live and die on this day." - The Grey
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Jan 17, 2017 11:20AM Pipandor wrote:

I have three Herceptin infusions left to go and I am going insane from the itching. I have tried every type of cream, Benadryl and Reactin. The only thing that works is icing and that is hard to do during the night and at work. I'm hardly sleeping and having trouble focusing at work. I'll mention to onc but she generally brushes these things off. If anyone out there has a clue, please share!

Dx 1/2016, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (IHC) Surgery 2/4/2016 Lumpectomy: Left Chemotherapy 3/10/2016 Taxol (paclitaxel) Targeted Therapy 3/10/2016 Herceptin (trastuzumab) Radiation Therapy Whole-breast: Breast
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Jan 17, 2017 09:11PM luv2fish wrote:

I know this might seem strange, but I saw a post somewhere and the person said they had been to a skin Dr. They figured out it was due to inflammation in the skin. I figured I take Advil fir inflammation so tried it and it works. If it's too bad and advil doesn't take care of it I use ice packs... always works for me..

Dx 11/28/2014, IDC, Right, 4cm, Stage IV, metastasized to bone, Grade 2, mets, ER+/PR+, HER2+ (FISH) Targeted Therapy 12/19/2014 Herceptin (trastuzumab) Targeted Therapy 12/19/2014 Perjeta (pertuzumab) Chemotherapy 12/19/2014 Taxotere (docetaxel)
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Jan 29, 2017 07:05PM ddart wrote:

I have tried everything for the itch too. The one thing that seems to help is frankensence oil. I mix frankensence and lavender essential oils in a carrier oil like argan oil. I use it whenever the itch starts and it almost always soothes the itching.


Debbie Dx 7/20/2007, IDC, 1cm, Stage I, 0/4 nodes, ER+, HER2+
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Jan 29, 2017 08:11PM MinusTwo wrote:

I suggest that your call your dermatologist, a true skin expert.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jan 30, 2017 07:31PM Pipandor wrote:

Thank you ladies for the suggestions. I'm getting by using a compression bandage to wrap a soft ice pack around my arm and applying lots of extra strength lanacaine. My onc doesn't think its caused by the herceptin because it's localized on my left arm but it does get itchier right after infusion. Wondering if it could be a neuropathic itch caused by the radiation which left my left armpit and rib cage pretty sore. Hoping it will fade over time like the other treatment side effects.

Dx 1/2016, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (IHC) Surgery 2/4/2016 Lumpectomy: Left Chemotherapy 3/10/2016 Taxol (paclitaxel) Targeted Therapy 3/10/2016 Herceptin (trastuzumab) Radiation Therapy Whole-breast: Breast
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Jan 30, 2017 07:32PM - edited Apr 20, 2017 09:02PM by Pipandor

This Post was deleted by Pipandor.
Dx 1/2016, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (IHC) Surgery 2/4/2016 Lumpectomy: Left Chemotherapy 3/10/2016 Taxol (paclitaxel) Targeted Therapy 3/10/2016 Herceptin (trastuzumab) Radiation Therapy Whole-breast: Breast
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Apr 20, 2017 09:01PM Pipandor wrote:

It's now been almost 6 weeks since my last Herceptin and thank goodness the crazy itch is gone. Four months of that kind of itchiness was possibly the worst part of treatment because there was no relief from it and it kept me awake. Now the real fun can begin :)

Dx 1/2016, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (IHC) Surgery 2/4/2016 Lumpectomy: Left Chemotherapy 3/10/2016 Taxol (paclitaxel) Targeted Therapy 3/10/2016 Herceptin (trastuzumab) Radiation Therapy Whole-breast: Breast
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Apr 20, 2017 11:13PM Beatmon wrote:

Both of my arms itch like crazy after infusion of H&P... and my cheeks flush evernight for 2 weeks. ....for almost 3 years now!

Dx 7/27/2012, IDC, <1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Surgery 8/9/2012 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Surgery 12/1/2013 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/1/2014 Reconstruction (left); Reconstruction (right) Dx 8/9/2014, IDC, Both breasts, Stage IV, metastasized to lungs, Grade 3, ER-/PR-, HER2+ Targeted Therapy 8/27/2014 Herceptin (trastuzumab) Targeted Therapy 8/27/2014 Perjeta (pertuzumab) Chemotherapy 8/27/2014 Taxotere (docetaxel)
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Apr 21, 2017 04:57PM josalive wrote:

I couldn't take it anymore. I wasn't able to sleep at night because of the itching and nothing I did helped. It spread from my left arm to my right arm to my back and then to my chest. Today I dropped the perjeta and just did herceptin. I am hoping the itching goes away or I might lose my mind

Diagnosed a day after my 35th birthday. Three children under 5 and a wonderful husband. Lots to fight for! Dx 3/5/2015, IDC, Left, 2cm, Stage IV, metastasized to liver, Grade 2, mets, ER-/PR-, HER2+ (FISH) Chemotherapy 3/9/2015 Carboplatin (Paraplatin) Targeted Therapy 3/11/2015 Herceptin (trastuzumab) Targeted Therapy 3/11/2015 Perjeta (pertuzumab) Chemotherapy 3/11/2015 Taxotere (docetaxel) Surgery 8/2/2015 Lumpectomy: Left Radiation Therapy 8/27/2015 Whole-breast: Breast, Lymph nodes
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Apr 21, 2017 06:50PM MinusTwo wrote:

josalive - I'll be interested to hear if that made a difference.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Apr 23, 2017 07:04PM Basia wrote:

I am going insane with this itch!I have seen 2 dermatologists and an allergist trying to cover all bases. Nothing seems to help. For a while I felt some relief with milk thistle, thinking its a liver thing, but that relief was short lived. Various creams and oinmtents, nothing helps. At one time they told me to take decadron, it calmed the itch, but has its own SE.

I see my MO tomorrow for my quarterly followup. I am considering stopping Perjeta. Terrified of the prospect, but this itch is insane. I am at a loss. I've been on it for going on 3 years, not sure if going off is a viable option. I have tried skipping an infusion, but that didn't help, MO said it takes 2-3 months for the itching to subside after stopping.

Dx 8/2/2010, IDC, 1cm, Stage I, Grade 3, 0/9 nodes, ER-/PR-, HER2+ Surgery 9/6/2010 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Targeted Therapy 10/13/2010 Herceptin (trastuzumab) Chemotherapy 10/13/2010 Carboplatin (Paraplatin), Taxotere (docetaxel) Dx 5/19/2014, IDC, Grade 3, 1/1 nodes, ER-/PR-, HER2+ Surgery 5/19/2014 Lumpectomy: Right Chemotherapy 6/9/2014 AC + T (Taxol) Targeted Therapy Perjeta (pertuzumab)
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Apr 23, 2017 11:09PM MinusTwo wrote:

Basia - so sorry you're dealing with this. I assume you tried plain old Claretin? Or other allergy meds like Zyrtec & Benedryl? Please check back after you see you MO and let us know what he says.

I'm going crazy itching but I'm well past active treatment. It's apparently dry skin from aging. The only ointment that works for me is Fluocinonide - but it is a topical steroid so I don't use often.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Apr 24, 2017 11:02PM josalive wrote:

Basia - I hear you. I just couldn't take it any more so I dropped the perjeta on my last treatment. I had been on it for just over 2 years and am currently NED. My doctor has been urging me to go off it for a while. I always pushed back but this time I just finally feel that my body has had it. I'm just a few days out from skipping it. I'll check bac in a month or so and let you know if the itching gets better (I'm sitting in bed with multiple ice packs as we speak). Good luck!

Diagnosed a day after my 35th birthday. Three children under 5 and a wonderful husband. Lots to fight for! Dx 3/5/2015, IDC, Left, 2cm, Stage IV, metastasized to liver, Grade 2, mets, ER-/PR-, HER2+ (FISH) Chemotherapy 3/9/2015 Carboplatin (Paraplatin) Targeted Therapy 3/11/2015 Herceptin (trastuzumab) Targeted Therapy 3/11/2015 Perjeta (pertuzumab) Chemotherapy 3/11/2015 Taxotere (docetaxel) Surgery 8/2/2015 Lumpectomy: Left Radiation Therapy 8/27/2015 Whole-breast: Breast, Lymph nodes
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Apr 28, 2017 09:58AM LisaY wrote:

I'm also going crazy with itching. My arms, legs, and back look terrible. My legs itch the worst. One thing I have found that helps a bit is taking a bath in a mix of epsom salt and sea salt - half a cup of each. Then I put sweet almond oil on my skin. Sometimes I use a calendula cream. Wearing light, breathable clothing helps, too. But, like some of you, the itching has me considering going off Perjeta.

I'm definitely interested in what your experience is, Josalive.

Dx 7/2016, IDC, Right, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR+, HER2+ Chemotherapy 8/28/2016 Taxol (paclitaxel) Targeted Therapy 8/28/2016 Herceptin (trastuzumab) Targeted Therapy 8/28/2016 Perjeta (pertuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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