Herceptin - Quick Side Effects Poll

VioletKali, like you chemo was stopped after 4 due to SEs. Had hives and neuropathy. Today Herceptin was held due to echo results. Going to cardiology next week. Onc doesn't think it's from Herceptin but persistent high bp. My potassium is low. I think it's bec she doubled my bp med which is a water pill. That leads to low potassium levels. Which makes me wonder if it leads to decreased heart function. In other words- it's her fault, not Herceptin or my ridiculous bp- which does need to get in check. I've read about a Finland study that gave it for 9 weeks and found it just as effective as the year.

do you eat Ketogenically? If not or never heard of, you should join in on our thread. This diet will give you tons of beck up. Many have chosen no treatment at all.

haha- dark chocolate is the best!

I'm reading my echo and it's messy! What a huge diff 3 months make. My first was normal all over except mild murmur. This one- goodness! Most of the issues are left ventricle related. My onc says she thinks it's from my high bp. But my bp is not consisteny high. Shoots up with stress. It does need to be managed tho. I'll admit that 100%. But herceptin site says cardiac issues affect left side so obviously it's the herceptin. I go next Friday. Wish I could go sooner

I'm due to travel for a vacation 5 hour flight. Onc said I can fly but wtf does she know?!?

I wasn't able to get my Herceptin this week. My Muga last week showed my EF dropped to 52. I had an Echo done this morning and see the cardiologist on Monday. I'm bummed. I only have five Herceptin treatments left.

Violet- ✋🏾 high five! That's how I feel. Onc said I could but I do not trust her. I called cardiology. Haven't seen me yet but was told if she gave the ok since she's the one who ordered it, her word is ok. I'm just a worry wart. I feel fine. Ran 2 miles this morning. Felt great.

Momato 3, I'm wondering when this started for us. Mine went from 64 to 51. I've only had 5, one of which was herceptin only. I'm did to go till feb so have quite more to do.

Minus 2- thanks! It's good to hear it is reversible and can go back up. That's what 'they' say but I needed to hear it from one of my sisters. But tell me this, did it go back down again after u went back on, did they reduce the dosage? I don't understand why go back on if that's what it did. Maybe a one time reaction???

MaryJC - I continued with the Herceptin because I'm ER/PR negative. I don't really have any other options than to treat the HER2+ with whatever I could. . I did complete the year but I'm sorry I can't remember what my low was that one time. I don't think much below 50. An extra week w/o treatment fixed that up. They didn't reduce the dosage and I didn't have to delay again. I did refuse to continue the Perjeta for a year after the TC and the AC, although the MO suggested that. It had potential SEs I was un-willing to risk - although Perjeta is so new the SEs are not well documented yet.

rose- my understanding was the drippy nose is from the H. I was looking forward to that and watery eyes being over with chemo. Nose stuff stayed. Mines not all the way drippy. One nostril a lil bloody. Fun.

Minus2- wow good for you! Just one week and it resolved? I wonder when within the 3 months mines started dipping. I get mine every 3 weeks and have only had one solo.

Mommato- I guess it was closer to 4 months bec I got first echo before chemo at beginning of February and most recent end of May. Yes H with A has more risk factors bec the A def can do that. Not yet for cardiologist. I go on Friday. I'm scheduled for another echo on 6/24. I'm praying it's resolved. Like you I want to finish the treatment. Chemo was stopped at 4 due to SEs. I'd be sad and afraid if this was too. Do they have meds to treat it? Do u do weekly H or every 3 weeks?

MaryJC, I was going to ask you the same if you were weekly or every three weeks. I've read where some posters had to go to weekly because of heart function. I wonder if that would be an option for you. My BP was high (for me) at my appointment Wednesday. Of course it could have been because I was a little worried about what she would do about treatment. I'll have an answer Monday when I meet the cardiologist.

Nate - I expect a number of us are still reading this thread. Unfortunately I didn't have similar issues. I did have pain in my calves and numbness in my feet, but that's due to neuropathy, not the Herceptin. Since the regular 24 hour Claritin worked for my Neulasta pain, you might try taking that for a couple of days & see what happens. Everybody says I'm nuts, but I've also found that for me, Vitamin E - 400 ICU once a day keeps my calves & knees from aching. Hopefully some others will chime in.

Nate - BB is absolutely correct & I totally forgot. After one infusion cut down to 60 minutes, I never let them do less than 90 minutes for the entire year. It made a huge difference.

Thanks for reviving the topic, LeeAnne.

I'm doing Herceptin only on a clinical trial and had no SE from the first, 90-minute infusion but they are scheduled to drop to 30 minute infusions. If I have any issues I'll remember to ask them to slow it down. So far my only SE has been the drippy nose and that's certainly worth the potential benefit of tx.

Good luck with your leg. I hope slowing it down this next time makes all the difference in the world.

I'm doing 60 minutes herceptin and 90 minutes perjeta. Still was having terrible body cramps and pain dr. Recommended Leg Cramps, an otc. It has been a miracle for me. I told my onco I thought it was voodoo and he said Just like chemo! Lo

I've been doing H only every 3 weeks for the last 3 months and it's sort of hit or miss with SEs. Usually I just feel a little tired but there was one time that it really knocked me on my butt and wiped me out. I do also get a runny nose for about a week

I have started getting joint aches and back pain but I just started Tamoxifen last week and I think that is the culprit.

I always had a runny nose while on Herceptin. I'm five weeks out from my last infusion and the runny nose has disappeared. Herceptin also made me tired for a day or two. So those were the only two SE's I noticed. I always did the 30 minute infusion because I wanted to get in and out of there.