to those who recently went off Herceptin

Marily · 03-04-2009, 02:30 AM

Hi, I am just about at 6 months off Herceptin. So far all the CTC COUNTS, AND ALYSA, OR SIEMENS have been in normal limits but slowly raising. What puzzles me is that after all this time, I still have side effects I blamed on Herceptin; like mouth sores, cramping all over, sever itching deep down and mostly at night, chemo brain persists and others.
1 how are you doing ?
2. are you continuing to have side effects?
3 are you continuing to have ct/pet scans and blood tests?
4 Is your brain fog clearing up?
5 how are you doing mentally?
6 are you cnsidering go ing back on or have already done so?
thank you for your help..Marily

Brenda_D · 03-04-2009, 06:50 AM

Hi Marily. I'm about 9 months out and most of the things I attributed to Herceptin have disappeared.
I don't know what Stage you are, so don't know if you are on 1 year tx or more. I have to wonder what your chemo was, if any?
Chemo brain for me, was associated with A/C chemo and not the Herceptin so much, and my mental state is much improved. I am no longer having scans. Tumor markers for me have always been in the normal range, so I don't count on them. For me being stage 3, further Herceptin is not an option at this time.
edit- ok, I went back and looked at your first post and dx, and see your post is better answered by one of stage IV ladies.

vickie h · 03-04-2009, 07:45 AM

Hi Marily,
I am about 1 year off Herceptin. I didn't have any of those symptoms (except the brain fog from chemo). I did have mouth sores, but upped my vitamin B6 uptake to 100-200mg a day and they went away in a week. Sometimes mouth sores are tied to our digestive system (since they are a part of that digestive tract) and the diligent use of probiotics can clear them up, as well, as sufficient vitamin C.
I am about to go back on Herceptin next week, along with Navelbine and Cytoxin. Though I am not looking forward to the chemo, I am happy to have the Herceptin back. Try adding some B6 and probiotics and hopefully that will clear the problem up.
Love, Vickie

Lani · 03-04-2009, 09:26 AM

IF you look at the thread about giving your two cents re herceptin thread under the herceptin/tykerb board, lots of others have chimed in on what symptoms seemed to have resolved after stopping herceptin, etc

Marily · 03-05-2009, 12:21 AM

Vicky, and Brenda
Thank you for the information I do take the b and c vitamins, but will try increasing the b.

Hugs Marily
"Worry looks around, sorry looks back, Faith looks up.."

Nov. 1999 small lump r breast.
Jan 2000 Stage IV her2+++e+++p+++ liver lungs bones
chemo A/C followed by Taxol/herceptin
2001 surgery r breast, 13 lymph nodes
severe infection day 3 t 104, lost r breast and open wound abdomine , Neutropenia hospitalized x 4,

on wound vac 4 months.
due to failure to heal (missed window for radiation... Which was ok by me)
Herceptin until 2008, with tamoxofin 3 years,
2003 oophorectomy to go off tamox and go on Aromasin
continue with Aromasin
2004 CHF muga left ventricular failure ..@21
cardiac meds and diuretics O2 at night
2005 capped two teeth due to canals found in teeth
2007 neck surgery replace 3 bones disintegrating failed to grow third bone (damage to nerve, l side face eye lid droop, paralyzed pupil and l vocal chord. (Some response to pupil back and learned to redirect vocal tones.)
2008 redid neck surgery added 4th bone replacement and brace. New bones have compressed and need surgery to tunnel and relieve arm and face pain. Lower back bones now have no cushioning causing leg pain, spasm and weakness...
Oct 2008 Dancing with NED off Herceptin (two strong allergic responses to Herceptin increased choice to go off)
no tumor markers... so do Alysa going up from 6 to 9.9 CTC from 0 to 1 in six months off
will have ct/pet next week.

StephN · 03-05-2009, 12:09 PM

Dear Marily -
Gosh, I was thinking about you and wondering how you were feeling with these months off the Herceptin.
Since I did not ever have some of those symptoms you mention from Herceptin, I may not be a good person to answer. I found Herceptin to be quite gentle on my system.

However, after 3 months off (a break, since I am stage IV), the cramps of hands, legs and feet are sharply reduced. Nice to get a night's sleep without those pains!

Energy level seems to be a little better. Can exercise longer and handle more weight and resistence, but I DO work at that. Not much of a walker, except for errands and shopping!

Getting lab work with CA27-29 and CEA every 6 weeks. Will have my annual HER2 serum test with next week's labs.

MUGA - getting that next week as well, before my visit with onc.

I may extend my Herceptin Holiday depending on my results and what kind of close surveillance we decide on.

For cognitive function I am doing more crossword puzzles and other brain specific challenges. Making myself go through a lot of old business and personal files that badly need purging. It is work to decide what to keep and why.

jones7676 · 03-05-2009, 01:03 PM

While I found the "long term" challenges from chemo and Herceptin challenging and there certainly have been long term effects, I have now inherited a whole new set!

Perhaps what is needed is an appointment to specifically address those problems and see what can be done to alleviate each. Perhaps not all of them can be fixed, but hopefully a more agressive approach toward them would help you.

I hope you find solutions to many of them. Many people take fro granted the side effects that change people (not just in cancer) and think we should all just be glad to be alive etc.

Maybe there are additional resources and publications that could help you help yourself address them more - such as organice foods, changes of diet etc. that would help you. It is something I've been thinking about doing.....hopefully I will remember you if I find anything of great help.

Paty · 03-05-2009, 07:16 PM

Dear Marily,

Tomorrow one year ago I had my last infusion of Herceptin. So far so good. To answer your questions I can tell you that:
1.- I feel fine so far, sometimes a little tired.
2.- I have not been ordered to have a muga test or being seen by my cardiologist to check on my heart. I still feel some bone pain and some very small cramps in my legs, but keep on eating my bananas every day.
3.-I have my control test every three months. Bone scan only once a year- I had it in Febrary and was all normal. No blood tests.
4 and 5.- My brain seems to be fine but sometimes I find it hard remembering things, even at work my boss has noticed it. It is not severe, but it sort of scares me.
6.- I do not think my doctor is considering now more herceptin in the meantime.

Hope this helps.

Paty

Westcoastgirl · 03-06-2009, 07:03 PM

Hi Vicky, for what it is worth I just finished talking to the pharmacist at my cancer clinic today about the different supplements I was taking during chemo and she wants me off of probiotics because there is a slight risk with a depressed immune system to developing a reaction to the live bacteria in probiotics. She said there has even been a documented death?? I am very disappointed as I agree with you. Carolyn