Please post your two cents on Herceptin "side effects" real or perceived!

[agness]

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.

[Jkosmas]

Not sure if this thread is still being monitored but wanted to put my two cents in. I was re-diagnosed with er-/pr-/her2+ MBC in May of 2015. I did six months of weekly Taxol/Herceptin/Perjeta. Then six rounds of radiation. Now on Herceptin/Perjeta every three weeks indefinitely. All told I have been on Herceptin/Perjeta for a total of 16 months. M y side effects are below:

1) more at to get infections from hangnails, pimples etc.
2) Achy joints, feet, ankles, and legs
3) issues with runny and crusty nose
4) diarrhea for the first couple of days after infusion
5) Increase in pimples and acne (I'm 46)
6) Memory issues
7) slight depression
8) lack of sex drive (Worse than when I was on Chemo)
9) Vaginal dryness
10) Charly Horse cramps in my legs and feet on an almost daily basis
11) Slow hair re-growth

Planning on discussing these issues with my doctor this week. not sure there is much they can do. I do need to start working out. I am p0lanning on adding yoga and walking to my schedule this week to see if it helps.

[Colleen]

@jksomas I still receive herceptin and perjeta every three weeks. My nose was very runny for awhile after I stopped the taxotere. Looking back I attribute this to hair loss all over the body including the hair in your nostrils which filter air and catch moisture. It was an uncomfortable process as those hairs grew back but the drippy nose did eventually subside. My joints are achy at times but I do yoga and swim regularly to help with that. As for cramping my oncologist recommended magnesium, since I added that to my supplements I no longer have random cramping. My hair grew back slowly but it did grow back, however my eyebrows and eyelashes never came back and I am over two years out from the taxane.

[Colleen]

Oh and vaginal dryness and sex drive yup yup yup. Sex drive gone and hello vaginal dryness.