Herceptin - Quick Side Effects Poll
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Hi all,
Going to have my 3rd herceptin only on Friday. I still have trouble with diarrhea, even though I finished taxol mid April, but upping my dose of probiotics seem to be handling that. I had a constant runny nose and eyes which finally drove me to an ENT who prescribed a nasal spray that did the trick. The only thing that's a real pain is this floating nausea that comes and goes, sometimes pretty bad as I've not got too much appetite. Other than that I'm able to work again and since my husband and I work together it's good to be back to norma
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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.
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That is what I read too, the Finland study. I also read another study which showed VERY little difference between 6 and 12 months.
It LITERALLY has started to feel like "normal" chemo these past few months, and when I think about another infusion I have a massive panic attack. I am all about quality of life over quantity. If I did all of this and it recurred, I would be pissed that I did not follow my gut and stop. If it comes back, I do not believe it is because I could not complete an entire 12 months.
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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.
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No, I do not. That type of diet is really hard on the kidneys, and I have seen some issues with it in people with pre existing kidney issues. (I am a Nurse)
I do not eat anything processed. No cereal, breads, NADA. Just fruits, veggies, and meats. That is it. OH, and dark chocolate every day
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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?!?
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Exactly, Herceptin affects LVEF.. Left Ventricular ejection fraction. Hmmmmm.. Damn.. IDK, I would fly because "Dangit, I want my vacation!"
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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.
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It's my understanding that a lower LVEF (left ventricle ejection factor) number which can be caused by Herceptin will correct itself after treatment is over. However heart damage from Adriamycin is permanent. I had to stop Herceptin for the period I was getting the Adriamycin since it would have been a double whammy. All my treatments were every 3 weeks and i did have regular Echos. Only one time did I have to delay the herceptin for 3 weeks for the LVEF to go back up.
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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???
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I am getting H weekly x 18 and TC every 3 weeks x 6. So far just a slight headache the day after H which is relieved with Tylenol. The first loading dose over 90 min was with TC and premeds and steroids so who knows what caused the miriad of s/e. The drippy nose could be due to allergies. I take claritin for a week after Neulasta and only had achy lower back for 2 days. Day 6+7 post Neulasta. Next week is #2 of 6 so we will see.
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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.
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MaryJC, that is a big drop in a short period of time. I haven't had any symptoms of heart failure either. In fact, I run and/or walk four to five miles everyday. So you haven't seen a cardiologist yet? I'm really hoping he'll let me restart the Herceptin when I see him Monday.
Adriamyacin can cause heart problems but it is usually down the road...5+ years. I really think this is due to the Herceptin. I've been fine up until my Muga three months ago. I had a small drop then. The drop this time was a little bigger. I just want to finish!
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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?
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I just saw this: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC265376...
My bp is def not controlled
I have white coat and it soars when stressed. Needless to say it's been a stressful few months. Not consistently high but peaks with every appt. when I breathe deep it goes down. This says previously uncontrolled bp should be put on ace inhibitors. If not, if EF drops to -40 discontinue H. If drops but +40 continue but with ace inhibitors. So appears I was at higher risk for reduced heart function in the first place. Just praying the break and meds can help me recover and get back to treatment so I can complete the year.0 -
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.
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I am not sure if anyone is monitoring this still and I haven't read through it all yet but I wanted to ask about nerve/musle pain in the legs. I finished neoadjuvant Chemo Sept 15 ( Taxotere). I had started Herceptin on my last week and have continued on it eveyr three weeks. I noticed increasingly sore legs after and specifically my thighs were burning like i worked out and could barely get me up the stairs. I had my mastectomy last week and woke up with numb a numb right thigh from knee to hip. The it started to alternate between numb and burnng. Now when i move to fast it feels like a burning tearing feeling, my oncologist says its a SE of Herceptin and pretty much i will probably have to deal with it. Anyone else have it and any tips to reduce the pain ?? Right now I am trying to recover from the Mastectomy but man its making me crazy this thing issue and I have herceptin next week. I will start reading through and see if I can find anything like this in the meantime.
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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.
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Natejordlee, I don't have many issues from Herceptin, but I seem to recall reading that if you experience pain from Herceptin, you could ask to have your Herceptin infusion slowed down to 60 minutes, or better yet 90 minutes instead of usual 30 minutes. This supposedly often helps to prevent this side effect.
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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.
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That's a great idea ladies !! My first one was over a hour and i didn't have the same issues but after that they went to 30 minutes ... GREAT IDEA!! Thanks guys.. my daughter is a competitive dancer and i just tried some of her muscle rub and it relieves some of the burning sensation but I will definitely ask for a longer infusion on Tuesday.
Gives me some hope i can make it through the year
Lee Anne
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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.
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Hopeful - don't let them drop you to 30 minutes while you want to see if there are problems. Insist on at least 60 minutes for the infusion. I had to argue for 90 minutes every single time, but they did it.
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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
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I have both Herceptin and Perjeta (Pertuzumab) run at an hour and a quarter each plus 500 ml of extra fluid run at the same time.
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Minus Two - thanks for your advice. I will have a talk w/ the study nurse about that issue shortly!0
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I had gotten the Herceptin over an hour for most of the year and then one time I had an emergency and had to have them run it over 30 min.as I had to leave and get home. I didn't notice a difference. Same SE. Achy joints and feel crappy on the 3rd day after. I have 2 left. It will be interesting to see if these SE effects and my hair growth change. I hope so!!
PMR 53
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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.
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I've now had one tx over a period of 90 minutes and one at 30 minutes with no difference in SE or lack thereof.0
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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.
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