Starting Herceptin

NicoleIsASurvivor

Hi! I know and understand that everyone is different, but would like to hear your experience with Herceptin and the side effects you have experienced. I just finished my chemo 3 weeks ago. Just now starting to feel better and I have been reading a lot of different discussion boards, with a lot of different side effects. I just seem to have all the bad side effects. My whole cancer journey has been extremely tough and need support to get thru the rest.

Hopeful82014

Hi - I'm doing Herceptin as part of a clinical trial and have had no real issues with it.

I do get a bit chilled sometime for the rest of the day and occasionally have a mild, transient headache (not each time). After the first infusion I had some very mild nausea for about 30 minutes late in the day. That has never happened again. I have the infusion in the afternoon and usually take it kind of easy for the rest of the day - I don't sit around but I don't push myself to do a heavy workout, either. I do get the drippy nose that's so common but that's no big deal.

As you say, everyone's different but I think most people find Herceptin alone to be pretty easy to handle, and I hope you do, too.

Melissa-RN

I have found herceptin to be the easiest! It has not made me feel bad in any sort. I am on herceptin every 3 weeks until July and it doesn't bother me one bit! I hope it's easy and good on you, too.

SpecialK

I had difficulty with my first Herceptin only infusion, had hip and leg pain that was pretty severe.  I did not have this with any of the six infusions that preceded with chemo, but my infusion of Herceptin was run over 90 minutes when it was combined with the other drugs.  The first H only was done in 30 mins.  I asked to have the infusion slowed to 90 mins for the remaining H only, and never had this problem again. I am not alone in this, and while this is anecdotal - there are many others who post here on BCO who have benefitted from slowing their H only infusions down. I also continued to have the same GI issues I had experienced during chemo until my onc nurse advised starting a probiotic, that was a game changer.  I had the typical runny nose, and did start to have frequent low grade headaches toward the last few H only infusions - but both cleared up rapidly after I was done. Good luck!

Moderators

Melissa-RN, thanks for joining Breastcancer.org, and thanks for sharing your experience with everyone!

Kimm992

Congrats on finishing chemo! I just had my last chemo last week and will be continuing with Herceptin only until the end of December.

I'm also interested in hearing other's experiences.

mara51506

I have been fortunate with my experience. I only have some fatigue for about 24 hours after an infusion. I have had minor mouth sores after an infusion that are cured with salt/baking soda rinses and no runny nose. I have mine the regular 30 mins every 3 weeks. I do have joint pain, though I blame being in menopause more than chemo/herceptin. As long as I am active with biking/walking and stretching, I would call the pain minor. No major GI issues to report. They have resolved almost completely since finishing chemo a couple of months ago. My heart function is still normal and I am halfway through my 18 infusions. I do hydrate a LOT on infusion day since I find that helps ease fatigue for the first couple of days but I am able to work and do everything I wish to. Good luck.

Tresjoli2

I had a problem when I switched to the herceptin only three week dose. I didn't feel well after the first infusion, and my bones hurt. I, like SpecialK, have asked that the infusion be slowed down to 90 minutes, and this has helped. I do get migraines now, but it's hard to tell if that is herceptin, or if it is the Lupron injections or the tamoxifen. I have also developed itching that lasts for a couple of days after the infusion, so I have to have Benadryl with the infusion and take Benadryl when I get home and I'm ok. This itchiness had gotten progressively worse with each infusion til we slowed things down and added the Benadryl

Loretta_J

I meet with my MO today. I will start Herceptin soon. Just wanted to check in. My details don't show up as everyone elses does at the bottom. 

I am 69 have Stage 3 IDC with lymph involvement. Positive for Her2 and for the BRCA gene mutation. Will have chemo and Herceptin to knock down the cancer prior to BMX and ovarian surgery after the first round is done. Then radiation. 

JCS28

I have had no problems with herceptin and perjeta. I had 6 rounds before surgery and am now on my third round of herceptin/perjeta/taxotere. The very first herceptin/perjeta I had mouth sores but it was a loading dose which was higher. Since then I have zero side effects from herceptin and perjeta. I would take it for the rest of my life if they let me!

CassieCat

For me, my Herceptin-only infusions were practically non-events. No real SEs to speak of, other than the mental fatigue of being in the chair every three weeks. I hope it goes equally well for you.

NicoleIsASurvivor

Thank you all so much for your responses and sharing your experiences going thru Herceptin treatments. I have had severe fatigue, joint, and muscle pain with my first dose. Having my second next week...not looking forward to it lol but I'm hoping it will be better this go round. Thank you all again!

Lj061197

hi,

I finished chemo Dec 7th. My treatments were good until 5 and 6. I have bern lucky with the Herception no side effects. I have been on the Lupron shots since September tried the amederix ,after a week so so sick, so my oncologist took me off the Ameridex for now. I will try again once I'm off the Lupton injections. I can handle hot flashes bone pain but dizziness and nausea can't do it.

I am having my remaining ovary removed in about 6 weeks. Still bones sore. When I get up I'm like a rusty engine once I get about 50 feet I'm ok. I walk about 3 miles a day.

We have been through so much between surgery chemo and radiation no wonder we are sore. I am getting my port removed when I get ovary out can't wait to get rid of the ball and chain.

MimiMaes

Hello Ladies,

My mom is about to begin Chemo. She is HER2+ and had her left breast fully removed. She attempted to get an implant, but it was removed due to an infection. Tomorrow she gets her port and chemo to follow next week. She has had such a hard time already and hasn't even begun chemo yet.

I am wanting to know what side effects can I expect from her 1st chemo treatment. I believe she is taking Perjeta and Herceptin. This diagnosis has been a diagnosis for myself and my siblings. Thank You for taking the time to read this!

Moderators

MimiMaes, you may also find these pages on our site helpful to understanding the possible side effects:

Perjeta

What to Expect When Taking Perjeta

Herceptin

We are wishing you all much luck, and very glad you found us here.

Warmly,

The Mods

ednamary

I had the same type of pain during Herceptin treatment. In fact I developed peripheral neuropathy and was hospitalized. I understand this is not a common side effect.

Do hope you feel better.

NicoleIsASurvivor

Thank u for replying!!! I am very sorry to hear that u are having trouble with it too. My oncologist says they have never heard of any side effects...even when I take the booklet in with the side effects clearly printed...but they say that only happens to very few patients. So no help from anyone. I've decided to stop treatment at my 8 months mark..which will be this Tuesday. I hope u are doing well and God bless u!!!