Herceptin effects? Stopping Herceptin?

[Cristina19]

Greetings Ladies,

I have a few specific questions that, perhaps, I could get some wisdom on. I finished 6 rounds of TCH and had two additional treatments of Herceptin alone. The last chemo treatment hit me pretty strongly (nails bruised and lifted and particularly bad swelling in my legs for almost two months after chemo).

My MUGA after chemo came back 11-points lower than my baseline prior to chemo so my doctor stopped my Herceptin. I had another MUGA, and my score went back up but not up to baseline. I resumed Herceptin and started to "feel" my pulse (not fast, not irregular, but "strong") and 4-5 days after Herceptin, I had some swelling in my legs, left leg slightly more swollen than right.

I have notified my doctor, but I'm curious to know your experience; and, I have these questions:

1. Have any of you had swelling in the legs that was not accompanied by a drop in MUGA score? Can Herceptin cause swelling that is not connected to heart-function?

2. Have any of your heard of a recent study (studies?) out of Europe that are showing 6-months of Herceptin to be effective in preventing recurrence?

3. Have any of you heard of studies that show TCH (simultaneous infusions of Herceptin with chemo) to be more/less/equally effective than AC-->TH (Herceptin following initial chemo)?

Thanks for your thoughts!

P.S. I recently met a woman in my local support group who was 33 when diagnosed, ER and HER2 +, Stage 4 (mets to liver). She went through a course of chemo followed by 6 months of Herceptin and is NED for almost 7 years now. This stuff can work; keep the faith!

[juanita]

Sorry but i can only answer your first question. I had a problem with my right leg and foot (the side i got treatmentsin) swelling. But my muga score did not drop. It did go down, but then came back up even without me stopping treatment. It's been almost 2 years since i finished treatments and besides chemo brain the only thing I still have problems with is that swelling. Docs don't have an explination for it.

[Gerri]

Hi Cristina,

I too can only respond to your question regarding swelling. I had swollen legs (one more so than the other) and ankles during my entire treatment and beyond. My Echos were always in the normal range. Finally, this past January, I asked my onc if I could get something to take down the swelling. She prescribed Lasix (a diuretic) and it worked like a charm. My ankles are now a different size than my calves and my feet fit comfortably in my shoes. What a difference in the way I feel at the end of the day.

Hope others chime in and respond to your other questions.

All my best,