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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.
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- 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.
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