HER2 Support Group Forums - View Single Post - Please post your two cents on Herceptin "side effects" real or perceived!

agness · 08-15-2015, 04:59 PM

I received 16 doses after 6 rounds of TCHP, with a seventh dose of Perjeta. I noticed:

Slowed hair growth -- even after I kept most of my hair by using cold caps

Fatigue

Irritated nose lining with dripping
Migraine symptoms after 11th dose which I had never before experienced ever. I had ocular disturbances that lasted for a good part of an hour without headache symptoms

Aching limbs -- this lasted the final three rounds until I called it quits at 16 of 18 doses. The MO had no recommendations

Bad reaction to radiation treatment - it was suggested by the nurse that patients on Herceptin seemed to have stronger reactions to treatment. I healed up pretty quickly after thankfully, minus a little fibrosis.

Weight gain - not sure the cause but I did slow down a lot during rads. I gained 10 lbs in a month and couldn't lose it even though I wasn't on hormonal therapy and my menses returned. I even had my thyroid checked which was normal. Herceptin might have contributed. Six months later I fit back into my old clothes again.

08-15-2015, 04:59 PM	#674
agness Senior Member Join Date: Aug 2014 Location: Seattle, WA Posts: 285	Re: Please post your two cents on Herceptin "side effects" real or perceived! I received 16 doses after 6 rounds of TCHP, with a seventh dose of Perjeta. I noticed: Slowed hair growth -- even after I kept most of my hair by using cold caps Fatigue Irritated nose lining with dripping Migraine symptoms after 11th dose which I had never before experienced ever. I had ocular disturbances that lasted for a good part of an hour without headache symptoms Aching limbs -- this lasted the final three rounds until I called it quits at 16 of 18 doses. The MO had no recommendations Bad reaction to radiation treatment - it was suggested by the nurse that patients on Herceptin seemed to have stronger reactions to treatment. I healed up pretty quickly after thankfully, minus a little fibrosis. Weight gain - not sure the cause but I did slow down a lot during rads. I gained 10 lbs in a month and couldn't lose it even though I wasn't on hormonal therapy and my menses returned. I even had my thyroid checked which was normal. Herceptin might have contributed. Six months later I fit back into my old clothes again. __________________ Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall. Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy. 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED. 10/27/15 atypical uptake in right cerebellum - inflammation? 12/1/15 Leptomeningeal dx. Starting IT Herceptin. 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly 3/2016 - stable scan 5/2016 stable scan 7/2016 pseudoprogression? 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT 11/2016 Cyberknife to temporal lobe, HBOT just prior 12/2016 - lesions starting to show shrinkage 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone. Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing. Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.