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

[Mary Jeanne Phillips]

Hi Lani, Great survey. Diagnosed in June 2001,Her 2 positive pro.positive, no lymph node involvement but eschemic evidence.Had radiation regime and then 5FU and Cytoxin I think. Mets to liver, lungs, and bones in 2004, then brain mets in 2006, had craiotomy, mets to brain in 07 and 08, had gamma on them (5 tumors in all.) Started Herceptin after craniotomy in 06. Have taken zometa since 04 I think. Took Femara then for only 6 months. that is all the chemo I have done. I started Macrobiotics in 05. Tumors have remained fairly stable except for brain mets.
I didn't think I had any side effects from Herceptin because I got up evry day and didi my life activities. But now that these things are mentioned I realize I have had terrible sinus, splitting nails, (or thin to no nails) hair condtion. RBC holding but not good.My energy levels have been good most of the time. I am a very high energy person, so that is why I have not taken any systemic chemos up until this point. since Herceptin is a targeted treatment, I felt "safe". I do have terible hot flashes but am post menapausal and have had terrible hot floashes for years. That is why I took HRT for 12 years.
I am in the delimma of what to do now with the offer of Tykerb without Xeloda since there is progression in all the tumors and the mets to the brain.
I hope this helps but basically I am thankful for Herceptin and the low side effects for me. I guess I just take the way I feel for granted and have not blamed it on Zometa or Herceptin.
Would love to hear from anyone about Tykerb. Mary Jeanne

[Mary Jeanne Phillips]

I don not know how to start a thread. Is there anyone who could help me?? I reply to others but wanted to post one. I wrote it out in the thread section, but didn't know how to send it. THANKS Mary Jeanne

Hello everyone. I was diagnosed in Aug/07, Stage 2B, ER-, PR-, HER2neu+ Grade 3. Did chemo (Epirubicin, Cyclophosphamide, Taxol) which ended last Feb 1/08, finished 32 rounds of radiation, and now just doing solely Herceptin every 3 weeks. I am so looking forward to the last infusion on Dec 12/08.

Thanks for all your posts about the side effects of Herceptin. It is from the experiences of others that I can validate my own side effects. Since it's been 4 months since my last radiation and 5 months since chemo, I still got to feel some other side effects for which I have Herceptin to "blame". I think the worst side effect I got is a terrible headache from the infusion (once a terrible vertigo), thin nails that get easily cracked, some memory issues (although chemo should be partly to blame this time). My own MUGA tests are okay so far.

Over all, I'll have the s/e anytime as long as this drug will keep the cancer out of all of us. Wishing everyone the best!