Your experience with Herceptin

hopeful_36

I am recommended Herceptin, but do not want to take it for the side effects.

Could you please share your experience with the drug, and whether you were taking it on its own (and method of administration), or in combination with other drugs.

I am also refusing radiation and chemo.

Grateful for your comments, as they'll help me with the decision on Herceptin.

Cornflake_Girl

Exactly what side effects are you afraid of? After 7 infusions I've had exactly zero side effects. The only risk I'm even slightly worried about is the one to my heart, but that's reversible. And I only worry that I would have to pause Herceptin because I LOVE what it does for my survival chances. So far, so good on the echocardiograms I have every 3 months.

Are you being offered Herceptin alongside a taxane chemo? I took it with Taxotere and Perjeta before my surgery, now taking it alone every three weeks for a year. I can understand being early stage and not wanting to take Herceptin if you can only get it with chemo, but man, I would REALLY want the Herceptin.

NotVeryBrave

I received Herceptin along with Perjeta and chemo drugs in the beginning so it's hard to say "what caused what" for SE's. I had an excellent response. While I don't know for sure which drug or combination did that for me, I believe it was the Herceptin. I've continued on it every 3 weeks via infusion since the original 6 rounds of chemo and I'm not aware of any obvious SE's - and I generally get everything.

Since this appears to be your second BC, I would strongly recommend at least trying the Herceptin.

GraceB1

My only SE was a drippy nose and being tired the day of the infusion. Would do it again if needed in a heartbeat. Had no issue and had my heart checked as we went along and would have quit if I did.

Kimm992

I had a full year of Herceptin with zero side effects!

BellasMomToo

These were my SEs that *may* have been attributed to Herceptin: stiff/weak knees and leg muscles, brittle nails, itchy-ness, and drippy nose. Nothing too bad. Did a full year.

mara51506

I have been on Herceptin since 2015. The first treatment, they give you extra called a loading dose. I found myself to be a little tired from that. After that, I was fine. Even with Perjeta added in, no real side effects other than a drippy nose when walking. Side effects have to be listed drugs BUT not everyone gets them. Herceptin has kept my body clear of mets since 2015, I did get one brain met BUT the drug does not penetrate the brain. It is an excellent treatment and I would recommend taking since HER2+ cancer is aggressive. If you get the option to take without chemo, I highly recommend it. A small number of people have had some issue with heart function BUT that will go away if Herceptin is held back or treatment finishes. An ECHO is done every couple of months and one before to check heart function. Though this is scary, not doing anything would be a much higher risk even if cancer was removed. Good luck in your decision.

BucsGirl

I started Herceptin + Taxol last December. I had 12 weeks of Taxol with Herceptin every 3 weeks. I had a very bad reaction to the initial dose of Taxol. They slowed down the infusion rate and prescribed dexamethasone as a premedication for the rest of my Taxol infusions. I did have side effects with Herceptin, but nothing that would keep me from taking it again. I had a runny nose and some very minor nose bleeds (dry nostrils). My legs felt heavy when walking up stairs. All of that cleared up a month after my last Herceptin infusion.

I still have some minor joint pain, but that could be from the Tamoxifen.

Would I do it all again? Absolutely!!! 

TabzIsMyAngel

Watching this thread. I'll be having AC#3 this Friday, then after I finish the four ACs I'll be on the same protocol KB870 just finished. Hope mine goes as smoothly, although I'm nowhere near as fit & active as KB appears to be.

hopeful_36

Thank you all who responded, as it is making me feel inclined to giving it a try.

Just back from a meeting with oncologist following the discovery of the HER2+ situation. Her (and breast surgeon's)recommendations are revision surgery for clear margins, radiation, chemo + Herceptin, Tamoxifen. I told her my decision on no rads no chemo is non-negotiable. She kept asking to change my mind sharing bad examples and repeating the grim prognosis for me.

I told her the only thing I am open to (thanks to your responses here that make me believe just Herceptin is not too bad) is the idea of Herceptin on its own. Which she said is against the protocol, not evidence based, etc. I stood my grounds firm, and she said now she has to think about it. I said fine.

We are scheduled to meet in the end of January by which I'll have MRI done, and also following my visit to the Hippocrates Health Institute. Meanwhile, I'll keep researching the subject of Herceptin and listening to others' feedback (so please keep sharing) regarding the med. I should make a decision re: Herceptin by Jan 20th. If the doc approves just H, then I'll go for it. If not, I'll remain on alternative treatments only.

BellasMomToo

Special K (an incredibly helpful member here with extensive knowledge) mentioned a movie called "Living Proof" staring Harry Connick Jr. It's about Herceptin and how it came to market. I purchased the DVD from Amazon, and it gave me increased appreciation for Herceptin.

I loaned my copy to an acquaintance who was dx'd this year with mets after 20 years. She is now triple positive, but when she was first dx'd 20 years ago they didn't test for Her2. She is on H&P and seems to be doing well. It's difficult for us to talk about our dx's cause I recently finished treatment and she is on H&P for life. I think/hope the movie gave her some piece of mind.

suemed8749

Had 6 treatments of Taxol/Carboplatin/Herceptin, then finished the year of Herceptin - infusions every 3 weeks. No side effects other than a drippy nose. MUGA scans throughout the year showed no heart damage.

I was diagnosed almost 10 years ago! 9 years of no recurrence. Best wishes to you as you make your treatment decisions.

BucsGirl

BellasMomToo - I also took SpecialK's advice while I was still in treatment.  I bought the DVD from Amazon. It definitely gives a whole new appreciation for Herceptin. I totally agree with you. Anyone who is on the fence about this drug should watch that movie.

GodsWithMe

Hopeful, by now you should have seen your doctor again. I hope you also watched the movie... very helpful. I am beginning Taxol/Herceptin tomorrow. I asked my MO if I could take Herceptin only and he said the evidence shows Herceptin alone offers very little benefit compared to Herceptin + chemo. Taxol is a milder drug and is gentler (for many) on the body than other drugs. I had 20 radiation treatments and actually thought that was a piece of cake! No pain, only mild darkening of the skin, and only minor tiredness. I know the decision is yours, but I hope you will reconsider treatment. I am NOT looking forward to the next 12 weeks, but it is a tiny moment in time compared to a lifetime.