Herceptin - Quick Side Effects Poll
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I was on Herceptin weekly for 3 months - side effects in order of severity were:
Blood clot - VERY sharp pain in neck. Followed by two sharp pains. The next morning had an appointment already scheduled and was able to speak with the Doctor. She wasn't very concerned at the time, however, she called me later at home and said after speaking with another oncologist I was to go for an ultrasound right away. Ultrasound showed a blood clot. I was put on a blood thinner and the clot cleared within days - I felt it clear (also hurt some) & had an almost immediate energy boost. Given how quickly it resolved I did not have to stay on the thinner - BIG Hooray for that!
Cysts - under left upper eyelid. Very uncomfortable especially at night when trying to sleep. They would sometimes drain and comeback. Went away when I completed my Herceptin. Saw the eye doctor.
Rash - flat red non-itchy rash all over arms and trunk. Went away over time.
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I get Herceptin every three weeks. It is the injectible (Phesgo) which also contains Perjeta. I have been on Herceptin/Perjeta-only for 6 months (finished "actual" chemo in April). The side effects I've noticed are:
1. Aches and pains (eg when getting up after sitting a while). But could be from chemopause? Sort of severe, but stable. I don't do anything to treat it.
2. Occasional teenager-style acne. Mild. I treat it by keeping moisturized, since it seems to flare when my skin gets dry. I just apply jojoba oil whenever I wash my face. I think it helps a lot! My NP prescribed topical Clindamycin, but the label had a giant C. Difficile warning, so I never used it.
3. Frequent runny nose. Mild. I don't treat.
4. TMI warning: I swear I poop almost every time I use the bathroom. Usually little deer-poops. It sounds like no big deal but it really is irritating. Plus very rare (a couple times a month?) diarrhea. I don't do anything to treat it.
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Following lumpectomy in June of 2023, which resulted in one involved margin, my re-excision surgery was delayed to allow for a course of targeted adjuvant treatment intended to shrink residual disease (early stage, triple positive, invasive LOBULAR cancer— a histologic subtype which is rarely associated with HER2+, incidentally). I began on Letrozole in early July, and started PHESGO injections (herceptin & perjeta, on 3-week cycle) in August. Just had my 4th injection. No chemo. As others have stated, it’s somewhat difficult to correlate SE’s with the two systemic treatments involved (endocrine vs anti-HER2), but after 4 rounds of Phesgo, here are the main SE’s I’ve experienced:
* Diarrhea/loose, watery stools: Daily. Not just limited to a few days after injection. Not unmanageable (e.g., “explosive”), but this disconcerting & unrelenting symptom is my ‘new normal,’ and is definitely attributable to herceptin/perjeta.
*Intervals of constant nasal drip. Faucet-like. Comes & goes. Also have developed temporary nasal sores & scabbiness. Seems to affect mucous membranes. Have had two mouth sores as well, very unusual for me. Dry mouth is also present.
* Minor hair loss/thinning: most noticeable after initial loading dose of Phesgo. Seems to have stabilized over time.
* Red Eye- inner corner of one eye turned bright red 2 days after loading dose. Resolved after two weeks with ophthalmologist - prescribed drops, & has not recurred.
*A steady increase in BP. Baseline pretreatment was 122/72; elevated readings every 3 weeks since 1st injection; currently has risen to a new high of 149/85+. I suspect Letrozole plays a role here, as well, but I had zero cardiovascular issues pre-treatment. Baseline echo was deemed “perfect” by oncologist; scheduled to have followup echo next week & will evaluate options at that time. I dread winding up with lasting cardiotoxcities as a result of BC treatment. Sometimes feels like trading one disease for another!?
I have not noticed any unusual fatigue whatsoever. Try to walk at least a couple miles nearly every day, and have also managed some fairly strenuous uphill hikes while on these meds. So far, no joint pain.
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Hi,
I had Taxotere, Carboplatin and Herceptin when I was treated in 2012.
I had awful bone and joint pain which my oncologist attributed to the two chemo drugs.
Once those were done I was only getting Herceptin for another 8 months.
My bone and joint pain kept getting worse instead of better.
I became convinced it had to be the Herceptin as I had been done with chemo for months but my onc said that wasn’t a side effect.
I finished a year of Herceptin with increasing bone and joint pain and that never went away after getting off of Herceptin.
A year after stopping my onc saw me at my regular appt and had years in her eyes as she told me how awful she felt for not listening to me that I was convinced it had to be the Herceptin causing that pain. She had never seen that before but had another patient with it and researched it better and saw that whereas it is rare, less than 3% it is a side effect and it causes permanent pain in joints and bones and deterioration. I have had a knee and hip replacement and both shoulders surgeries in the past 10 years.
If you are experiencing any adverse effects that are not listed as known side effects report them and ask your onc to investigate if there are even just rare cases of this.
Someone makes up the small percentage of side effects. Even 1% of the thousands and thousands who have had a side effect with a drug means a number of people have had that experience.
She would have taken me off Herceptin a few months from when I finished chemo (which is what we assumed was causing my pain) had she realized Herceptin can have that effect in rare cases.
She said it likely wouldn’t have changed the effectiveness of Herceptin as women come off it early for heart issues and they haven’t seen they have worse results than those who get the full year and coming off it after 5 or 6 months would have kept it from getting progressively worse.
We know our bodies best and it is important we listen to them and relay that to our doctors.
There of course are other explanations for some of the symptoms we have that are unrelated to a drug but any symptom should be reported and pursued even if it shows it listed as a rare side effect.
My friend who is a statistician says whereas statistics help us in choosing treatment options etc we also must be aware that for the people who fall into the “low percentage” it provides little comfort.
it doesn’t mean we don’t evaluate whether or not we go forward with something when the chance of improvement from a treatment is not statistically speaking that high, or deny a treatment or drug because there are small percentage risk of serious side effects. We just need to be basing how our bodies feel and what signs or symptoms we are experiencing as being valid and worthy of investigation even if statistically it is uncommon or rare.
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