Roll Call for Herceptin Only - No Chemo

[Priscilla - OK]

Hello - I am taking Herceptin Only - NO CHEMO - and would like to know from some others taking Herceptin only, how long they think they feel the effects (pain at tumor sites). I was taking it every 3 weeks, but weekly seems to be working much better. Would you please reply on the net or send me e-mail personally? Luv and Hugs, PJ - am trying to decide if I need to add Chemo.

[Sheila]

My biggest symton is being overtired...and occasionally achey the day I get it. I am on Herceptin every 3 weeks...I think the question whether to add more chemo or not depends on the response to Herceptin, and whether or not it is shrinking the tumors and keeping things in check. Usually, a Dr.'s exam and scans will tell this...if it's working, why submit the body to more toxic effects? These may be needed down the rode. Email me if you want to talk more.
Prayers and Hugs
Sheila

[janelle]

I am stage IV and doing Herceptin only. Was doing Chemo from March-June, but had such bad side effects...2 stays in hosptial. Had the "quality of life" discussion w/dr and decided to stop chemo and do Herceptin.

Have been on Herception only weekly and have had no side effects. It is helping so much. Had 2 lung mets, GONE. Had fluid between lung and chest walls of both lungs, GONE. Fluid in belly, REDUCED. Tumors in liver (too many to count), some are scarring over, healing!!!!! Also the size of my liver is decreasing. I say GOD BLESS HERCEPTIN...

It is keeping me alive!
Hugs,
janelle

[Jennifer]

Hello, my sister has been on Herceptin alone for almost a year, after nine months of Taxotere and Xeloda. Her doctor thought since she had such a good response from the chemo and the herceptin she could do herceptin alone and she still has regression. She does once every three weeks with no side effects really. Hope this helps--Thanks, love Jennifer

[Kathy from Ohio]

I Have been on Herceptin and Arimidex for one year for mets to bones and lungs--good results so far.

[Lolly]

Have been on Herceptin every 3 weeks since Aug. 2001, after 6 months Herceptin/Navelbine for 6 months which brought me to NED.
Hugs,
Lolly

[Kim in CA]

Hi,

I was on Herceptin every 3 weeks from May 02 to July 03 at which time my CA 15-3 jumped to 45. Even though scans didn't reveal anything we decided to try adding Xeloda. Unfortunately, my body did not metabolize the Xeloda correctly and it built up to toxic levels which put me in the hospital for a week. We were hoping that my next labs would reveal that my markers had really dropped, but they only came down slightly. Then, lo and behold they started a downward trend and have been in the normal range since about Sept. I get them checked every 3 weeks when I get my Herceptin. The last two visits they have started going back up again, so I think we will be contemplating more chemo in the not to distant future, but at least the Herceptin keeps it from spreading like wildfire. I think that the Herceptin just needs a little boost now and then. I've been stage 4 since 2001 and feel like we pretty much have things under control, we just watch things very closely and try to deal with any flare ups before they get big.

P.S. I am also on Femara once daily since May 2002.

[Steph N.]

Hi -
I've been on Herceptin and Zometa (done with the chemo - hopefully forever!) for 19 months. (Zometa is now every 6 weeks instead of with the herceptin every 3 weeks.) I was so slammed from all the chemo that for a while I did not know what side effects were from what as I also took the herceptin with the chemo.
Now my joints have stopped killing me, my digestion is back to normal, and I am building up my stamina on a gentle exercise regimen.
I think the main ongoing complaint I have is LEG and FOOT CRAMPS. I take some quinine pills for that and it seems to help. I still feel a little tired, but my doc feels that is leftover from all the chemo I had back to back.
"Chemonesia" has subsided and I don't forget so many things. I will take this drug anytime over chemo!