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Herceptin alone - how did you feel?

zsazsa1
Posts: 557
Joined: Oct 2018

Has anyone been on just Herceptin alone?  I have my first Herceptin-only infusion today, expecting I won't feel sick at all, but I'd like to know if there's anyone out her who's had it just by itself yet?

Little Annie
Posts: 28
Joined: Jul 2018

Herceptin alone is a piece of cake compared to chemo.    minor bone pain started after several treatments but totally manageable.  Some tiredness but quality of life pretty much unaffected.  I was on Herceptin alone for 6 months before it stopped working.   Good luck to you.

zsazsa1
Posts: 557
Joined: Oct 2018

Thank you, Annie.  That's good to hear.

What stage/type were you?  It's disheartening to hear that it stopped working.  From the studies that were done with Stage 3-4 patients, it sounded like it worked for just about that long - 6 months.

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Kaleena
Posts: 2064
Joined: Nov 2009

my mom has been on herceptin only for 4 yesrs or advanced stage 4 breast cancer.   She did not want chemo.   The doctors initially didn’t like the idea.  She also had a module in both lungs.  After starting herceptin the nodules in her lungs went away and the Breast mass reduced enough that they were able to do alumpectomy.  She had no side effects except some tiredness after treatment.  She goes every 3 weeks.   They also do a mugs scan every six months to make sure it doesn’t effect her heart

zsazsa1
Posts: 557
Joined: Oct 2018

I had my second one a week or two ago - I cannot tell that I had anything.  I feel no side effects from it at all.

Little Annie
Posts: 28
Joined: Jul 2018

zsazsa1,   very much like you, I had UPSC stage 3a.   Like you, my CT scan is not showing any measureable tumor but CA-125 has gone from 8 to over 100.  Feeling great at the moment since I am not in any treatment at the moment.   Will get another CT scan in six weeks and then decide on a clinical trial.

Good luck to you and I hope that Herceptin works a long, long time.

zsazsa1
Posts: 557
Joined: Oct 2018

Oh, Annie.  I'm sorry to hear about that jump in Ca 125.  Would a PET scan help to locate the source of it?  Where was the tumor located, that made it 3a?  I hope that you can get in a trial for something effective.  There have been some reports of things working well in combinations.  Look on OncLive, filter by uterine serous, and it will come up with recent reports.

I'm slogging through IMRT pelvic radiation now, terrified that my colon will never work again (having awful diarrhea), terrified of radiation cystitis, of which I'm having a tiny bit.  And yet, I've convinced myself that I'm going to be cured of this horrible malignancy.  So even though I feel sick from the radiation, I'm enjoying my hair growing in, and just living life day by day, pretty much the way I would have, had I not gotten this illness, except that I'm not at work.

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