Herceptin - Quick Side Effects Poll
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Hiya,
I have Herceptin every three weeks, will do until November. Worst side effect is the nose sores and nose sensitivity/bleeding. I use Flixinase nasal spray which eases sores, I stopped for a while and sores were worse so I know it helps me. I also get mild headaches and am currently anemic. A good steak with kale is what I am doing for that.
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I've just had 9/18 herceptin; injection every 3 weeks. Had lumpectomy first, then 5 rounds of fec chemo and 20 sessions of radiotherapy. Side effect for me have varied in intensity with each round being different; some worse/better than others. I've experienced: nausea, metallic taste in mouth, diarrhoea, lack of appetite, fatigue, brittle nails, sore, sometimes bloody nose, headaches,healing from a cut seems to take longer (that could be chemo but finished 6 months ago).
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I'd guess much of it is from Chemo and not Herceptin.
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My sister has breast cancer and has been receiving herceptin since March. She recently had a Ct scan showing ground glass opacity and based upon that and on increasing shortness of breath the oncologist sent her to a pulmonologist who has diagnosed pneumonitis and recommended discontinuation of the herceptin. She is scheduled for mastectomy next month will return to pulmonolgist a month later at which time they will start her on steroids if her breathing hasn't improved. Has anyone else experienced this They characterized the decrease in pulmonary function as mildly abnormal but I am worried.
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I took Herceptin for a full year. I had 'ground glass opacity'. It scared the $hit out of me. Turned out it is reasonably common and resolved over a number of months after treatment. I did go to a pulmonologist & was found I have mild COPD, but my breathing issues mostly evened out also. Since I am ER/PR negative, Herceptin was my first line of defense & I didn't want to quit it. Hope your sister's issues will resolve.
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had my first herceptin only last friday. experienced altered taste and reflux. had bone pains too.pretty bad. i dont know if its from herceptin,lupron or cumulative effects of chemo. fatigue also but then maybe thats from chemo too. also had diarrhea
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Thank you minus two. They aren't starting any treatment now, she will return to the pulmonologist a month after her surgery and if she hasn't improved they will consider steroids. The fact that they are going ahead with surgery and not having her come back until August makes me believe her case is not severe but I know she is scared that the damage to her lungs is permanent. Scary
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Hi--
I got pneumonitis but it was from the Taxol, not the Herceptin (I am on Herceptin also). My pneumonitis was basically an allergic reaction to the Taxol (very rare, only 1% of chemo patients get this).
Your sister's doesn't sound as bad as mine was, I went to the ER and could barely breathe, it was a true medical emergency. They put me on oxygen and steroids right away. I actually got better quicker than they thought I would (spent four days in the hospital).
Anyway, I think taking her off the Herceptin is probably the right course of action (I only was supposed to have one more chemo and they canceled it). If they do give her steroids, it's a very effective treatment. I was on a very high dose and it made me quite jittery, but by 4 pm every day that went away.
Hope your sister gets better quickly. It is a scary thing.0 -
Hi,
I'm new to this community. I started Taxol with Herceptin on Dec. 2, 2016. I had the very bad reaction to Taxol immediately when it started. They had to slow down the drip and give me a premedication dosage of dexamethasone (night before and morning of tx) for me to continue on with my chemotherapy (12 weeks). The steroid had to be absorbed into my system prior to the Taxol treatments. My Herceptin-only treatments started on Feb. 24, 2017 and I'm still getting that every 3 weeks until the end of this year.
My symptoms on Herceptin have been mostly sinus/nose issues. A nosebleed or blood in the mucus. It all depends on how dry my nose is at the time. I was taking Benadryl during chemotherapy, but stopped taking it after Feb. 17th (last Taxol infusion) because it was drying me out too much. I also tend to bleed in a few areas on my face when washing it with a bath towel. It doesn't stop bleeding for a little while. It's very strange that it only happens the weekend after my Thursday infusion. I think it's strange since my last Taxol infusion was back in February.
Recently, I've been getting other SEs such as headaches, fatigue, and waking up with a dry throat & mouth (or dehydrated). That was after my most recent Herceptin infusion. That started a week ago. I must admit that I hadn't been drinking as much water as I was in the beginning. My suggestion is to drink lots of water even through your year of Herceptin treatments. It may be the dehydration that caused the headaches, etc.
I'm also getting hot flashes, night sweats, and heart palpitations, an swollen ankles. That could be a combination of the Herceptin and Tamoxifen. I started the Tamoxifen right after chemotherapy.
Hope this helps! I'm looking forward to posting more frequently in the future. This community has really helped me through this whole journey. I thank you all for your wonderful posts.
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Just Claritin? I've been taking Singulair for a while, treatment has not started yet. I wonder...
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has anyone been told they will have to be on herceptin for life . they did me . i cant seem to find anyone who has been told the same thing yet i had a recurrence that came back in the same spot 6 months after chemo. i would just like to know if anyone else has to do this . its every 3 weeks for life .
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gacrose - please go to "my profile" and post your diagnoses and treatments to date. You will need to make it public so it will show with your posts. We would need that information to accurately answer your questions.
A tentative answer is possibly if you are Stage IV.
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HapB - I had almost no side effects except a runny nose when they did my infusion over one hour. How fast did the push the infusion? They really don't like to slow it down, but it stopped all the side effects when I insisted on an hour.
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HapB - I doubt it. I was over 70 when I had my recurrence & chemo & ALND surgery & more chemo & Herceptin for a year & rads. Try getting them to slow it down, but do tell your doc too.
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When you were having the combined injections, did you have a full bag of saline each time? The extra bag of fluids also made a big difference for me.
Did they always give you benedryl? Maybe that's a difference? Or did you have dexamethasone steroids for a couple of days with your combined infusions? Just trying to figure out what other things might be different.
Have you started hormonal treatments? The could cause the severe joint & bone pain.
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Hap - so sorry. I hope the docs can find a solution.
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Hap, did you experience the bone pain when they gave you the herceptin with taxol?
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I just finish chemo TCHP
I have my first infusion herceptin next week I asked my onco about SE he told that I will not have any SE with herceptin they just have to control my heart that's why I need echocardiography every 3 months
Is that true????
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i see that hapB
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Gigilala: I really haven't had any SEs from Herceptin only infusions. I have a drippy nose, but I think it's from seasonal allergies cause my nose is less drippy now than it was in the spring. My quarterly echos have been fine so far. Just had my 7th herceptin only infusion last week.
A couple of months ago I started running on the treadmill again. My legs are much weaker now than when I started chemo. Tried to do lunges today and couldn't w/o holding on to something. Not sure if this weakness is related to herceptin or because I'm more out of shape than I thought.
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qacrose3, I to will be on Herceptin and Perjeta forever. Initially the plan was every 3 weeks for a year but I think results from the recent aphinity trial may have changed the plan. I'm not thrilled about it but so far I only have a bone met and if the H&P combo helps prevent further spread, I'll do what it takes.
Previous SE's were some muscle/bone pain, flushing and super itchy skin, however, I took the advice of some here and had the infusion slowed from 30 to 60 minutes with no issues this cycle.
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bellasmom: I wish I will not have SE I had a hard time with chemo
Can I have supplement with herceptin or like a chemo we cannot ?????
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gigilala - I'm not sure what you are asking. Usually Herceptin is given with Taxotere or Taxol for a jump start. Mine was 6 infusions 3 weeks apart. Then Herceptin is continued for most of a year - 17 infusions total. Please go to my profile & fill in your diagnoses & treatment so we can better answer your questions.
HapB seems to be an outlier. I'm guessing some allergy since she had the problem with Taxol too? Most of us have had no problem with Herceptin if it's given over 60 minutes.
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Hap - the difference is I had Taxotere and not Taxol.
I had TCHP - Taxotere, Carboplatin, Herceptin & Perjeta starting in 2013 every 3 weeks for 6 rounds. Taxol is given differently. I only had Benedryl the first round while they determined I was not allergic to the drugs, but did have dexamethasone for 3 days every time, and Kytril for nausea and a full bag of fluids between each infusion. I also had Neulasta 24 hours after every TCHP infusion.
Since I did not have pCR (a complete response) after the TCHP & ALND surgery, I had AC - Adriamycin & Cytoxan - every 3 weeks. It was supposed to be 4 rounds but I gave up after 3. They stopped the Herceptin while I was having Adriamycin because they both cause heart issues. Then I had rads along with Herceptin for the balance of the 17 weeks.
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My Herceptin treatments were given over a 30 minute period. My only side effects were runny nose and fatigue for about 24 hours after infusion. Anyone that has severe side effects should request to have their infusion over 60-90 minutes. That seems to help.
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yes I to was told I would have to take herceptin and perjeta for life or until they stopped working
Paula.
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HapB - I also had Taxol once a week for 12 weeks. The only difference was that I had T+H every 3 weeks starting with the first week of Taxol. I didn't receive T+H every week for 12 weeks. Huh, I guess it depends on the oncologist's plan of treatment.
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Yes, that is correct. I started Taxol and Herceptin on 12/2/2016 (the same date). I had Taxol once a week for 12 weeks. I've been receiving Herceptin every 3 weeks from that date. I'm now only receiving Herceptin every 3 weeks until the end of the year.
Sorry, I didn't mean to confuse you. I was just responding to your post of the treatment plan you were given. It sounded as if you were told that you would get Taxol & Herceptin once a week for 12 weeks. I may have misread that.
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Yes - I too had Herceptin every three weeks. No matter whether taxol or taxotere - the herceptin is usually every 3 weeks.
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HapB, i thought Herceptin is given every 3 weeks? maybe yours is a lower dose?
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