Life AFTER Herceptin - Page 2

Susan Rankin · 06-24-2006, 09:41 PM

Hi,

I started taking Arimidex in May of 2005. I started weekly Herceptin in June of 2005. Just had my last infusion on June 20, 2006. I just changed over to Femera six weeks ago due to joint pain with Arimidex. Actually I am still symptomatic so I think it might be the aromatase inhibitors causing all the joint and muscle aches.

I will post on how I am doing post Herceptin soon. Actually I think I already feel better and it has only been four days!

Is anyone experiencing mouth ulcers, gum tenderness taking Femera or Herceptin. I have had quite a few in the past six weeks.

Susan

judy · 06-26-2006, 02:36 PM

Hello All:

I finished Herceptin mid-April. My course of events was: Aug/04 diagnosed with Stage 2B bc her2/neu+++ er/pr-. Had double mastectomy with reconstruction, 4 cycles AC, 12 weekly taxols, herceptin every other week for 1 year.

Major side-effects:

Extreme shortness of breath (right heart congestive heart failure)
Joint pain
Drippy nose
Crummy nails
Very fatigued (although could be from heart meds)

The CHF is the most troubling. I was never at all depressed during surgery, chemo, etc. It all seemed very transient. CHF, however, seems like it could be more permanent. I think it's been a slight bit better than last few weeks. Therefore, I believe it was from the Herceptin, even though it is right side and not left side. My cardio & pulmonologist tell me they've never seen right side without left side with my particular characteristics. Called Genentech and they took a report.

At about 8 weeks out, my nails are a little better, my nose does not run, my hands don't hurt quite as much. Energy still stinks -- but it's probably heart related.

I had a birthday/end of treatment party last week. We had a wig burning ceremony!

Good luck to all. I let you know if all of these side-effects get better.

Judy

kat in the delta · 06-27-2006, 11:24 AM

My sister was not HER2 +, but took tomoxifen for 5 yrs., now on aromasin. She tried Femara, but said it also made here joints ache, etc....so was switched to aromasin(sp?). Since then I have others complain about the Femara making them ache and stay in pain. Maybe ask Onc. to switch one more time. Did you say you started taking an aromatose inhibitor after herceptin or during it ?? I am ER +, I finally discovered and will finish my 1 yr of herceptin July 28th, but have not had anything for the ER part---- any answers to when to start somthing for ER+ ?????--- kat in the delta

kat in the delta · 06-27-2006, 11:31 AM

I am almost finished with a yr. of herceptin. Herceptin made me achey. I have discovered that the "weakly" Positive ER makes me ER+. When did or will you or anyone take an aromatose inhibitor for ER+ ???----- during, or after Herceptin ???? kat in the delta

Becky · 06-27-2006, 12:50 PM

I started taking tamoxifen right after rads. I then got my ovaries removed and started Arimidex (and Herceptin). I am still on both. Usually the (anti) hormonal is given right after chemo and rads are finished. Nowadays, Herceptin is started either with the taxane portion of chemo or right after chemo is over (but continues thru rads). But the anti hormonals are always given after chemo and rads are both over.

Kind regards

Becky

Susan Rankin · 06-27-2006, 08:44 PM

Kat,

I started Arimidex in May of 2005 when I finished radiation. I then started Herceptin in June 2005, weekly, for one year. I changed over to Femara about six weeks ago and my joint pain is a little better. If I stay active, I am almost pain free. It is when I sit or sleep too long, and then I feel like I am 100 years old. I am happy to be off of the Herceptin. I finished on June 20 and maybe that is why I feel a little better. I will post as to how I feel as time goes on.

Susan