Herceptin - Quick Side Effects Poll

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

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?

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

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.

I have my Herceptin only last week and all my bones are painful

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.

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

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.

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

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.

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.

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.

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.

Thanks for all your comments ladies, keep them coming

Paula.

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?