Topic: Anyone on Herceptin-only have tips for chills, body aches?

Forum: Immunotherapy - Before, During, and After — Discuss your experiences with the benefits, risks, and side effects of immunotherapy treatment for breast cancer.

Posted on: Feb 6, 2021 04:32PM

Posted on: Feb 6, 2021 04:32PM

abbyrhodes3 wrote:

I finished up my TCH sessions three weeks ago (yay!) and have moved on to a Herceptin-only phase that's expected to run through August. I really thought I'd have zero side effects from it; I've been more concerned about monitoring/watching for cardiac issues and didn't even look into other side effects.

Well.... first session yesterday, and last night I went from feeling fine to having severe chills. I was under a sheet, three blankets and a comforter and still had deeply cold hands and feet. Got up to pee, and was so 'cold' my teeth were chattering and my body was shaking. House was warm, so it wasn't about it being winter. The chills lasted about two hours- then I was sweltering, and started having body aches and pinging pain which required Tylenol. Today, I'm still having some body aches (not as bad, but all over) and I have no energy.

Anyone else have these symptoms from Herceptin? If so, how long are you finding they last per round? Tylenol helps but doesn't knock it out- does anything else seem to be of use? Would Benadryl on treatment day help?

I'll ask my care team all this- but they often don't have a lot of feedback on the more 'minor' side effects, and feedback from anyone in the same boat would be helpful.


Dx 9/8/2020, IDC in right breast, 1.5cm. Very slightly ER and PR positive- 5 percent and 1 percent. HER2+. Had TCH chemotherapy (six rounds, Sept 2020-Jan 2021). Lumpectomy and Sentinel Node Biopsy - 2/17/21.
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Sep 20, 2021 09:29PM armom4 wrote:

I had body aches but no chills. My MO made me have Benadryl before infusions and I didn't have body aches after that.

Diagnosed age 35. ATM gene mutation.Severe reaction to Taxol and Taxotere. Just Tamoxifen now Dx 1/3/2020, DCIS/IDC, Right, 2cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 2/11/2020 Lymph node removal; Mastectomy; Mastectomy (Right); Prophylactic mastectomy; Prophylactic mastectomy (Left) Targeted Therapy 3/27/2020 Herceptin (trastuzumab) Chemotherapy 3/27/2020 Taxol (paclitaxel) Chemotherapy 4/17/2020 Taxotere (docetaxel) Hormonal Therapy 5/29/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 7/1/2020 Surgery 3/3/2021 Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Surgery 6/8/2021 Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant
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Sep 20, 2021 11:31PM racheldog wrote:

Thank you both for chiming in. I think AbbyRhodes3 used the best term to describe how I feel---"off kilter" as if I have to occasionally walk slow and definitely make sure my two big dogs do not knock me over when they are excited to play or wake up in the morning. That plus some blurrier vision which comes and goes but feels better to make sure I walk with my glasses on! Don't usually wear glasses outside but this is all new on this journey.

This is one tiring journey and everyone is correct that these meds affect people so differently. I was trying to look up the half life of Herceptin when it is given every three weeks as an infusion. Looks like maybe 9.35 days, but certainly can stay in the system for much longer. Be so glad when all this is over. Thank you for sharing because oncologists seem to play down the side effects and hearing what others go through or have experienced is reality.

Dx 9/2020, IDC, Left, <1cm, Stage IA, Grade 3, ER+/PR+, HER2+ Radiation Therapy 6/1/2021 Whole breast Chemotherapy Other Surgery Lumpectomy; Lumpectomy (Left) Chemotherapy Chemotherapy Other
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Mar 24, 2022 11:32PM abbyrhodes3 wrote:

Hi, to anyone who might bump into this- how are we doing post-Herceptin? I am six months past, now, and it seems more like it's been a year! I will say again that I'm very thankful for this med- and hopeful for the difference it may make for my life- but also glad I'm done my course of it. Was not easy for me. My overall health is good these days. I'm past the aches due to the chemicals, and the fatigue from radiation. My next scan/check is August, which will be 1.5 years since my lumpectomy. My six month check was clean, thankfully. Hope all are doing well!

PS they changed the whole site and I can't find a thing. Off to look for links on hair loss...which sadly is going to be an ongoing issue for me. Small price to pay for existence, is how I am looking at it.

Dx 9/8/2020, IDC in right breast, 1.5cm. Very slightly ER and PR positive- 5 percent and 1 percent. HER2+. Had TCH chemotherapy (six rounds, Sept 2020-Jan 2021). Lumpectomy and Sentinel Node Biopsy - 2/17/21.
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Apr 10, 2022 08:10PM racheldog wrote:

abbyrhodes3: I , too, am exactly 6 months out from Herceptin and 8 months out from radiation. It has taken that long to finally begin to feel like myself again. It was not easy for me either. I still am not 100% but my sleep has been better and I am trying to eat better and exercise. Finally it has taken this long although being older the whole journey was not fun!

My new obstacle is that it has taken me to now to decide to go on these toxic AI drugs. I had really been down about these and was extremely reluctant to start. But I started today. Letrozole. I will try these but if the side effects become too much I will stop. I will not chase the SE of these drugs with yet another drug and antother drug. Oncologist push these as it is their protocol. I plan to look at naturopathic or Chinese medicine as well in case I make the decision to stop AI's. Will see but I agreed to try them.

Dx 9/2020, IDC, Left, <1cm, Stage IA, Grade 3, ER+/PR+, HER2+ Radiation Therapy 6/1/2021 Whole breast Chemotherapy Other Surgery Lumpectomy; Lumpectomy (Left) Chemotherapy Chemotherapy Other

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