Herceptin - Quick Side Effects Poll
Comments
-
OK, I just found an article that talks about both treatment options. Some people take it weekly, and others take it every 3 weeks. It's actually a good article that talks about the infusion rate as well. Maybe the dosage is different. The link is below:
0 -
Does anyone know how long after finishing Herceptin, your nose stops running?? I feel like a leaky faucet! Also does anyone find their breast gets sore after the Herceptin treatment. It only seems to affect the breast in which I had the lumpectomy
0 -
I've been getting herceptin every 3 weeks since 9/2016 and my last infusion will be the end of September 2017. 🤗 Recently I've been getting really dizzy and nauseous for a few days after the infusion. Everytime I move my head or eyes it gets worse. It's a strange feeling. It only last for a couple of days and has only been going on for a couple of months. I actually didn't even connect it to the herceptin until last week.
I'm not overly concerned, it's very manageable and I'll mention it to the nurse at my next infusion and if it happens again I'll mention it to my oncologist. I'm just so close to the end I don't want to take more drugs for the SE. Has anyone experienced this?
0 -
Hi Maggie & HelloSweetie,
I will be finished with my Herceptin treatment in November.
Maggie - My nose is still dripping, and I get the occasional nose bleed. Perhaps someone who has been off Herceptin for a while can answer that question. My breast doesn't get sore after that treatment, but I did notice that my affected breast would get flushed (would turn red) during my first 12 weeks of chemotherapy. I thought that was very strange as it usually just affects the face and neck. It happened every week whether I had the Herceptin or not. I attributed that to the dexamethasone. I had to pre-medicate with it the night before and morning of my Taxol treatment. I had a very bad reaction to it the first time it was administered.
HelloSweetie - I haven't had those symptoms, but maybe it's because you're farther along in the treatment. I'm noticing that my SEs seem to be getting worse now. I had my 3 week treatment this past Thursday. Last night, I was all achy in the joints and couldn't sleep very well. I had heart palpitations last night too. It could be a combination of the Herceptin and Tamoxifen for me. Are you taking a hormone therapy drug?
0 -
Interesting about your dizziness. I have had some bouts of that as well but never connected it to Herceptin.
0 -
Tampabay...yes I'm on tamoxifen
KB870...I have also been really conjested this spring and summer and in talking to my mom she thinks it might be vertigo due to the congestion. She says I usually get dizzy and I have always had inner ear issues and I would get dizzy.
I'm going to try and use the Netty pot to rinse my sinuses and be more diligent in taking my allergy medicine maybe that will help
0 -
Well, then it's probably the Herceptin. We know that it causes sinus issues. Sinus and inner ear issues are some what related. I've read the unclogging the sinus may help with inner ear pain. Your remedies sound like a good start to resolving it. Let us know if it works.
0 -
I am new to the forum and looking forward to hearing more from all of you about Herceptin. I received Herceptin along with Taxol for three months and started Herceptin only in April of 2017. My oncologist told me it would be "no big deal" but I am not finding that to be the case at all. I did pretty well on the Taxol and Herceptin combo, but the SE seem to be getting worse the more Herceptin only treatments I get. I am getting it every three weeks and have had 5 so far. This last one was the worst by far. I feel like every joint in my body is stiff and painful, I have flu-like symptoms, headaches, and nausea. The worst part is I never know what each day will bring. I'm a teacher and set to go back to work in three weeks, and I cannot imagine how I'm going to do that the way I am feeling right now. I worked through chemo and radiation but this is worse. With the last infusion they tried an hour instead of 30 minutes but that really didn't help. Has anybody gone to an every week or every two week schedule? I'm desperate for a solution and don't want to have to stop treatment. I have 8 more to go. Thanks for any suggestions you can offer.
0 -
Thanks HapB for responding. Happy to know I am not the only one who feels this awful on Herceptin. I have a treatment scheduled this week, and I will ask about possibly going back to weekly. I handled it much better on a weekly dose combined with Taxol.
0 -
I have my Herceptin only last week and all my bones are painful
0 -
Wow I didn't realize that Herceptin could cause flu and body ache SE. Hugs but to everyone going through that.
I talk to my MO's nurse and she had no idea about dizziness being related to herceptin and suggested I talk to the infusion nurses. So yesterday I had an infusion for herceptin scheduled so I went in and talked with the nurse and she seems to think it's related and had me talk to the pharmacist. He didn't think the dizziness and nausea was related to the Herceptin but that it was an inner ear issue. I brought up the sinus issues that I have read about and he said to treat the sinuses. So I've been really on top of taking care of my sinuse. So far no dizziness or nausea from my infusion yesterday so hopefully just keeping my sinuses clear will help with my SE.
0 -
As stated earlier, once i told my infusion center to slow down the Herceptin to 60-90 minutes instead of 20-30 minutes, I had no problems except an occasional runny nose. Many of us have found the side effects diminish with a slower infusion. Unfortunately many infusion centers will NOT slow down the infusion without direct orders from an MO. Give it a try and push if you need to.
0 -
I think the oncologist is finally starting to realize that Herceptin is not "no big deal," which is what he continually told me. A slower infusion did not help me so we decided together that I would go back to once a week instead of once every three weeks. As much as I do not want to go there every week, I need to be able to function. He finally admitted that maybe the higher dose was too much for my body to handle. I had the lower dose on Friday and already I feel better, especially with the severe joint pain. Good luck to everyone dealing with the Herceptin challenge. I was getting so frustrated with constantly being told that it should be a "piece of cake." It is not easy for everyone so keep pushing if you are experiencing these terrible side effects. Good luck.
0 -
TechnologyT: I'm so interested to see if taking your Herceptin weekly decreases your side effects. I had my infusion slowed to an hour and the Perjeta to 90 minutes many months ago. I can't say that it helped immensely....I'm now using Fentanyl patch 25 mg. The muscle spasms under my diaphragm, back and legs are better. I'm not sure if the Fentanyl did it but it appears so.
I don't really want to go to weekly treatments, but if it made me feel like a real person again, I would certainly think long and hard about it. Feeling like you have the flu and joints hurting so much you can't shop for groceries is terrible
0 -
They gave me two doses of Fentanyl during my port installation finished at 11 AM. Was a little out of it later in the day but cleared up pretty much the following night.
0 -
Well, it's good news and bad news so far going back to the weekly infusion of Herceptin. Good news is the severe muscle and bone pain is a lot better--especially my lower back. I'm still feeling flu-like symptoms but they are somewhat better. Bad news is the headaches are worse. I'm hoping that will get better once my body adjusts to the lower dose again. So far for me Herceptin only has been almost as bad as chemo. I think the situation is made worse because the oncologist did not want to take me seriously. I know this is keeping the cancer away (hopefully), but I do wonder what this drug is doing to my body if I can feel this bad. Trying to stay positive! It is great to know I am not alone.
0 -
HapB, I noticed when I googled Herceptin side effects, bone pain now shows up as one of the more serious side effects on rxlist.com/herceptin-side-effects-drug-center.htm. It does seem like many of the sites have updated the side effects to include much of what we are talking about. The message just doesn't seem to have made it to the MO and their staff. If you are having problems now, I think the 3-week dose will be much worse. It was for me. I could hardly function. Maybe the steroids will help. I was not getting steroids. Good luck with whatever you decide to do. Just remember the decision is yours.
0 -
Hap B, the spasms and cramps and joint pain had gotten to the point I was considering quitting the H&P.
The dose of the patch is so low over 72 hours I feel nothing like a narcotic buzz of any type. Not drowsy at all
0 -
I didn't think I had any SEs from Herceptin only, but now think I do. I finished chemo on 2/14/17 and had my UMX on 3/27. About a month later I started jogging/running on the treadmill again. I felt fine and worked my way back up to 4 miles a session (my pre-chemo routine). About a month ago I noticed that my legs/knees are becoming stiff and kind of weak. It's harder to run/jog and I can't do a lunge without holding on to something. Walking is still OK. Fortunately it's not painful (yet).
I just had my 8th herceptin last week. Hopefully I'll finish without my legs getting worse.
0 -
I'm also back to 4 miles a run/walk and after 18 weekly Herceptin txs, I'm also noticing stiffer joints than normal, for me.
0 -
HapB, not to weigh in on this at this late date, but a couple things... when I first saw my oncologist and "showed him" SE, he poo pooed them. Fast forward to my 1 week follow up with his nurse and she says "YES, it's a major SE with Perjeta and many of our patients"...WHAT??
Next, I got a neulasta shot the day after TCHP infusion and was told by my oncologist that there was no proof/studies that Claratin helps with bone pain after the shot (poo poo). On infusion day, the nurse asked me if I already started taking Claritin. Again, WHAT? My answer was yes.
I don't think that doctors are as up to date as they would like to think they are OR they rely on hard studies to quote from.
0 -
HapB, that is exactly how I was feeling. To answer your earlier question, I had Herceptin along with Taxol on a weekly basis for three months then the plan was to do the 3-week dose of Herceptin only for the remainder of the year. I will finish right around Christmas. I had the three week dose of Herceptin 4 times before I couldn't take it any more. I felt exactly as you described. The physician's assistant is luckily the one I am now seeing most of the time, and she is finally taking me seriously. I have now been back on the weekly dose for two weeks, and I feel much better. Side effects are greatly diminished--not perfect, but I feel like I can do more things now. I hate going once a week again, but I am happy to be feeling better. The terrible headaches are gone and the bone and joint pain is so much better. Still have the runny nose and slight stomach upset but it is nothing compared to how I was feeling. I wish you good luck in finding the solution that works for you. It is so frustrating that we are facing such resistance with the MOs considering how many of us are having problems--really makes me angry.
0 -
Hi, can anyone tell me if they have expierenced an aura after given treatment of herceptin and perjeta?
Than you I would appreciate any help,
Paula.
0 -
Paula, like a persons aura or other visual disturbance? If so, no I haven't experienced it or heard of it before. I think I read that vision changes are an SE of one or both though.
0 -
Funny you should mention that. I had that too on day 11 of my first cycle and it was as if my right eye had just looked too long at a round patterned headlight. Lasted a good hour or so and was quite distracting but since it was only in the one eye, I went on as usual and didn't say a word. I'm glad that I didn't mention it because my doctor would probably done the same thing, send me for tests.
On another note, the past 4 days I've been experiencing symptoms of bradycardia. I dug out the not-so-old BP monitor and got as low a reading as 42 BPM. Told my oncologist and he wants me to keep active and drink lots of water and to call him if I feel faint, etc.
0 -
HapB,
So sorry that your bone pain is sticking around. That bites. I can't imagine how I'd cope with that since they won't allow me to take tylenol, etc.
0 -
No Tylenol because it can mask a fever, my MO gave me tramadol, it worked well for me, maybe that's an option.
0 -
Thanks for all your comments ladies, keep them coming
Paula.
0 -
They won't allow me to take tylenol because my liver enzymes could have been better. The nurse of course had to ask my if I drank alcohol. Not since 1992.
0 -
I doubt it. One of the side effects of higher doses of Carboplatin is liver damage. Most likely if I were to mention that fact to my HO (hematology/oncologist), he would poo-poo that thought. If the manufacturer states this to be true, why is so easy to ignore?
0
