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Topic: Herceptin and Perjeta side effects after chemotherapy.

Forum: Immunotherapy - Before, During, and After —

Discuss your experiences with the benefits, risks, and side effects of immunotherapy treatment for breast cancer.

Posted on: Dec 20, 2020 01:31PM - edited Dec 20, 2020 01:35PM by dlr68

dlr68 wrote:

I have been on Herceptin Hylecta and IV Perjeta mono therapy. I have 6 treatments left. I had more gastrointestinal issues while on chemotherapy (TCHP) than I did on HP mono therapy (no GI issues whatsoever for first 4 rounds of mono HP). However, since my last two HP treatments, my diarrhea has picked up. I also have upper abdominal pain-sometimes on the left and sometimes on the right. Nausea seems to be a factor on and off. I had upper endoscopy when I was diagnosed in March--no ulcers or H pylori. Bloodwork three weeks ago was normal. My oncologist says it's unusual for me to have normal gastrointestinal function after TCHP and then suddenly develop problems in the middle of HP. I have started back on Protonix (PPI) and Pepcid. Anybody out there experience the same? Thanks

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Dec 20, 2020 07:29PM MinusTwo wrote:

I didn't have nausea, but did have continuing diarrhea with Perjeta. I dropped the Perjeta after TCHP & chose to do only the Herceptin for the rest of the 17 treatments.

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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Dec 20, 2020 08:36PM hnsquared wrote:

dlr68....I was her2- fish at biopsy and her2+ fish after surgery. I did AC-T before surgery and then started Herceptin and Perjeta after which I’ll do for a year. I had my port removed so I’m doing phesgo which is the subcutaneous injection of hp. I’ve had 3 so far with no issues. My MO told me the biggest side effect she sees with Herceptin and Perjeta is gi issues (diarrhea). She said if I had that issue we would drop the Perjeta which should resolve the issue. She also told me that it could pop up at any time. So far so good for me but if diarrhea starts I will ask to drop the Perjeta.

Dx 2/20/2020, IDC, Left, Stage IB, Grade 2, ER+/PR+, HER2- Chemotherapy 3/31/2020 AC + T (Taxol) Surgery 9/20/2020 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 11/10/2020 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Herceptin (trastuzumab)
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Dec 21, 2020 05:05PM - edited Dec 21, 2020 05:06PM by dlr68

Thanks so much, MinusTwo. I don't know if you guys can see the description of diagnosis underneath my post (I filled it in when I registered, but don't see it on this post), but diagnosed Stage 2A triple positive with 33 isolated cancer cells in one of six lymph nodes after right mastectomy in March. I had surgery first. My first Oncologist did not want to put me on Perjeta. I had some pharmacogenomic testing before I was diagnosed and it just so happened to list Herceptin as being a drug that I would have a decreased response to because of an FGFR4 genetic variant. I changed Oncologists and he put me on the Perjeta after three rounds of TCH, so then I got my last 3 rounds of TCH with P. I would hate to go off of the Perjeta, but Oncologist said he would not hesitate to drop the Perjeta if I started having problems with it.

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Dec 21, 2020 05:14PM - edited Dec 21, 2020 05:14PM by dlr68

Thanks so much, hnsquared. I just think it is so crazy how cancer can flip hormone status and her2 status! I am actually on Phesgo, as well. I've had two injections now. I never got a port when I was diagnosed because the original plan was to do 6 rounds of TCH and then Herceptin Hylecta injection. Perjeta was added on later at my request. Glad to hear your oncologist said that diarrhea could happen at anytime during treatment. Mine said that it could happen anytime during TCHP, but said that it would be unusual to start up down the road on just HP. It makes sense to me that if the medication can cause diarrhea, it could cause it at any time. I don't know what I will do..I think that if it really becomes a struggle, I will just do the Herceptin Hylecta after my next Phesgo.

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Dec 21, 2020 09:08PM - edited Dec 21, 2020 09:08PM by MinusTwo

dir - you need to go back to "my profile" and make your information "public" so it will appear below your posts.

Is this neoadjuvant chemo? If so, maybe the break while you have surgery will help.

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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Dec 29, 2020 04:50PM YesIamaDragon wrote:

You will do better to join us over in the Triple Positive group under the HER2+ thread. HP, even though it is antibodies, is really targeted therapy rather than what is usually called immunotherapy. There are loads of us who went thgouh TCHP over in the HER2 section though!

Dx 6/2019, IDC, Right, 2cm, Grade 2, ER+/PR+, HER2+ Hormonal Therapy Arimidex (anastrozole) Radiation Therapy Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab) Surgery Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Jan 8, 2021 09:56AM dlr68 wrote:

OK, thanks! I will.

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Feb 1, 2021 04:09PM DeniseML wrote:

Hi everyone,

thanks for this post. It helps to know what others are experiencing . I recieved TCHP neoadjuvant for 6 doses and had a lt. mastectomy 2 weeks ago. I will soon be restarting HP to complete 52 weeks of treatment. Path. report indicating PCR ( pathologic complete response ) to prior treatment so only immunotherapy needed now. hearing about SE helps to prepare even though I recieved HP prior to UMX. curious if anyone is experiencing hair loss again with HP only? I see that it's a SE of Perjeta. Just starting with hair return! Guess there are worse things than losing hair again. Also, is anyone experiencing peripheral neuropathy with Perjeta?

Dx 8/3/2020, IDC/IBC, Left, 3cm, Stage IIIC, Grade 3, 0/7 nodes, ER-/PR-, HER2+ (FISH) Chemotherapy 8/24/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 1/14/2021 Lymph node removal: Underarm/Axillary; Mastectomy: Left Radiation Therapy External: Lymph nodes, Chest wall Immunotherapy 2/23/2021
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Feb 1, 2021 07:02PM dlr68 wrote:

Hi DeniseML.

I have not had hair loss on my head, but I did lose my eyebrows and eyelashes 1-2 months after I completed chemotherapy and continued on HP. I was getting some peripheral neuropathy toward end of chemotherapy, and it has continued on through HP. I’m also having some issues with intermittent generalized itching (no rash) on arms, torso, and upper legs. Not sure if this is a type of sensory neuropathy, reaction to anxiety, or part of the “flushing” response to hot flashes from Tamoxifen??

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Feb 12, 2021 02:52PM DeniseML wrote:

Dlr68: Thanks for response. I spoke with MO since my last post. It seems I have some unusual symptoms occurring. Scheduled to restart Herceptin and Perjeta on Feb. 24th. Rads -CT simulation on 2/16 & rads about 2 weeks from now. The peripheral Neuropathy is progressing even though no chemo for 2 months now. Also nails are lifting from base, again unusual to just be occurring 2 months after last chemo & immunotherapy! Not looking forward to restarting Perjeta, though MO states she does not usually see progression in neuropathy with it. I will try it just because staging was IIIC with inflammatory component & still I obtained complete response to chemo. NO cancer found in LN or UMX! That being said, Perjeta only provides a 2% benefit when added to Herceptin. Both MO and I agree not to hesitate to drop Perjeta if neuropathy worsens still. Wishing everyone the best as you progress through treatment. Hoping for the best!

Thanks for sharing the other SE you are experiencing . I'll be sure to look out for itching. Are you able to have your MO prescribe med to help such as Xanax or Ativan ? NO need to suffer anymore than is necessary.


Dx 8/3/2020, IDC/IBC, Left, 3cm, Stage IIIC, Grade 3, 0/7 nodes, ER-/PR-, HER2+ (FISH) Chemotherapy 8/24/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 1/14/2021 Lymph node removal: Underarm/Axillary; Mastectomy: Left Radiation Therapy External: Lymph nodes, Chest wall Immunotherapy 2/23/2021
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Feb 16, 2021 12:53PM Pia_lux wrote:

I have completed three months of 3 weekly chemo and am starting Immunotherapy with Herceptin and smaller doses of chemo (I don’t know what) in 3 days for 3 months of weekly treatments and I am so anxious about the side effects, please tell me what I can expect

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Feb 16, 2021 03:43PM Moderators wrote:

Hi Pia_lux, We welcome you warmly to our community- glad you found us. If you haven't already, you may want to read our information on Herceptin. There you can read about potential side effects. You may also want to read about Perjeta. Also, let us know what your chemo is that they are giving you in addition, as this will greatly dictate the potential side effects. We're here for you!

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Feb 19, 2021 03:56AM Pitzell633 wrote:

hi, first time writing in. Not sure exactly how this works.😗

How long does herceptin stay with us to continue working?

My year is up in April. I’m concerned of course


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Feb 19, 2021 02:42PM ELW412 wrote:

This is also my first time posting to the forum. So glad I found all of you!

I just finished up 4 months of chemo (TCHP, then TCH, then Taxol and Herceptin weekly for the past 6 weeks as I did not tolerate the original protocol at all well.) I will have surgery in 2 weeks. I was wondering if anyone else has had Stage 1 ILC as well as DCIS? My oncologist is not giving me a break from Herceptin and I have not been able to eat normally for 4 months.

I, too, would like to know what it is like to be on Herceptin alone. She wanted me to also take Perjeta, but since I had such a bad experience with it, she dropped it but won't rule it out for the next year. I am terrified of feeling sick (nausea, diarrhea, lethargy) for another year. I know everyone reacts differently to these medications, but I just need more input.

Thanks!

Dx 9/14/2020, DCIS/ILC, Right, 1cm, Stage IA, Grade 3, ER+/PR-, HER2+ (FISH) Chemotherapy 10/9/2020 Carboplatin (Paraplatin), Taxol (paclitaxel), Taxotere (docetaxel)
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Feb 19, 2021 03:16PM Melbo wrote:

I finished the TC part of my TCHP in November and have had three infusions of HP by themselves since then. The first couple of rounds I felt mostly okay except the usual GI issues, which are controlled with immodium for me. After the last round two weeks ago I have been pretty nauseous and woozy/lightheaded fairly frequently, but I’m not sure if that’s from the HP, or a sign that the chemo knocked me into early menopause since I have also had quite a few warm (not quite hot) flashes.

Other than that my neuropathy has mostly gone away, my finger and toe nails seem to be returning to normal, and my hair is growing back.

Diagnosed right before my 42nd birthday. One husband, two dogs, one cat and no kids. Dx 7/16/2020, IDC, Left, 2cm, Stage IIA, Grade 3, 1/7 nodes, ER-/PR-, HER2+ Targeted Therapy 8/6/2020 Herceptin (trastuzumab) Targeted Therapy 8/6/2020 Perjeta (pertuzumab) Chemotherapy 8/6/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/20/2020 Lumpectomy: Left; Lymph node removal: Sentinel; Reconstruction (left); Reconstruction (right) Radiation Therapy 1/31/2021 Whole-breast: Breast, Lymph nodes
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Feb 20, 2021 03:53PM ELW412 wrote:

Thank you, Melbo. This is very helpful. I will just hope for the best!

Dx 9/14/2020, DCIS/ILC, Right, 1cm, Stage IA, Grade 3, ER+/PR-, HER2+ (FISH) Chemotherapy 10/9/2020 Carboplatin (Paraplatin), Taxol (paclitaxel), Taxotere (docetaxel)
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Feb 20, 2021 06:13PM dlr68 wrote:

Thanks for your information! I am taking Ativan 1.5mg at night. It helps, for the most part. Unfortunately, the only way to know what is causing what, is to drop a drug and see. I have two HP treatments left and will continue on Tamoxifen. I'm still having a pretty hard time with the itching. I'm hoping that the itching will go away when I stop HP by the end of next month. If I continue to itch for the next two weeks until my next HP treatment, I may just stop the Perjeta and get Herceptin. The interesting thing that I just found out was that there is an ingredient in Phesgo (the subQ Herceptin Hylecta and Perjeta that I receive) is L Histadine. L Histadine is an amino acid that is the precursor to Histamine. Histamine is what gets released in our body in response to allergies. That is why Claritin and Zyrtec, etc, are called anti-histamines and used for allergies. I'm not sure if there is enough L Histidine in Phesgo that is getting turned into too much histamine in my body..and that is what is contributing to my itching or not. I'm still researching. If so, I would be interested to see if L Histadine is also in the IV form of Hercepting and Perjeta. If not, I may go back to the IV forms for my last two treatments.

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Feb 20, 2021 08:49PM Pipandor wrote:

Drl for me itching in the last four months of Herceptin was one of the hardest parts of treatment. Nothing except for ice worked and I tried everything. Fortunately, it was pretty much over three weeks after the last dose of Herceptin.

Dx 1/2016, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (IHC) Surgery 2/5/2016 Lumpectomy: Left Chemotherapy 3/11/2016 Taxol (paclitaxel) Targeted Therapy 3/11/2016 Herceptin (trastuzumab) Radiation Therapy Whole-breast: Breast
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Feb 22, 2021 07:06AM helenlouise wrote:

I’m 11 months into H&P with treatment ongoing. I am itchy around the back my neck mostly and at times it drives me insane. There is nothing visible on the skin but I feel like I want to scratch it raw.

Where is your itchiness and what is it like? How do you treat it?


any advice would be much appreciated.

Dx 1/2013, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 2/3/2013 Lumpectomy: Left Surgery 2/10/2013 Lumpectomy: Left Radiation Therapy 3/1/2013 Whole-breast: Breast Dx 2/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/8 nodes, ER-/PR-, HER2- Chemotherapy 2/25/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 7/23/2018 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 8/27/2018 Chemotherapy 8/28/2018 Xeloda (capecitabine) Dx 4/2/2019, IDC, Left, 2cm, Stage IIIC, Grade 3, 1/8 nodes, ER-/PR-, HER2- Dx 4/16/2019, IDC, Left, 2cm, Stage IV, metastasized to other, Grade 3, 1/8 nodes, ER-/PR-, HER2- (DUAL) Dx 3/2020, IDC, Left, Stage IV, metastasized to other, ER-/PR-, HER2+ (DUAL) Chemotherapy 3/18/2020 Taxol (paclitaxel) Targeted Therapy 3/19/2020 Perjeta (pertuzumab) Targeted Therapy 3/19/2020 Herceptin (trastuzumab)

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