HERCEPTIN and/or PERJETA Threads
Comments
-
The HP has gone ahead.
I am relieved! Thanks for all posts.
L x
0 -
Fantastic Liz, I'm so happy for you!
Sorry the Augmentin made you sick. I find all of the antibiotic/antibacterial meds make me feel sicker than chemo ever did when I have to take a heavy dose,and it's so much worse when you're doing both at the same time. Hang in there and hope you start feeling better.
0 -
Oh No Liz - I haven't been on in a while. Sorry for what you are going through. Augmentin is a tough one. My son had to take it for repeated ear infections when he was a baby. It really caused runny stools, so beware. I hope you feel better soon!!
0 -
Liz, I am still sending warm thoughts and hope your ear will respond to the drugs.
0 -
Hi All
The ears seem to clear quite a bit on Fri aft during s revision lesson with my exam students!
Got home on Fri night and felt really upbeat but overnight they are blocking up again and feeling a little underwater. However I can hear the tv a bit now. Just that they are not back to normal and o have some ringing still.
It is a beautiful holiday 3 day weekend here though so I am quite happy.
Mara and Krenz thank you for looking out for me. The antibiotic is ok, I eat when I take one which helps.
L
0 -
Its so hard waiting for your ears to be better BUT great to hear relief is on the horizon.
0 -
I’m glad you received your HP, Liz, and hope the ear gets better soon!
I have a question for long term HPers who get diarrhea. Is there a pattern to it or do certain foods make it worse? I’ve been on H & P only since January and I’m starting to feel more like my pre-chemo self. I am getting diarrhea from time to time. I feel like if I could predict it better I would feel better about managing it, but so far I can’t see a pattern. I’d appreciate hearing others’ experiences.
0 -
henrietta, I would take immodium the day of infusion of HP and one more the day after when I dealt with it to avoid it. I wound up adding a daily probiotic taken with breakfast, takes a couple weeks to notice results and make sure to slowly increase fiber to bulk up stools. I eat cereal with a cup of fibre one cereal with granola and almonds with a fingerful of wheat bran. Again, go slow with increase of fibre. Food is always better than a fiber supplement if you can. No diarrhea since. Water goes without saying. Do not continue immodium if your bathroom habits are normal. Will take couple of weeks but will yield results. Not increasing fiber does not work to prevent the diarrhea from drugs. I have been on these drugs for a long time snd no diarrhea since early 2017. I dont even take the immodium any more.
Also, make sure to drink as much water as you can during infusion, being well hydrate will lessen the severity of side effects. Good luck.
0 -
Thanks, Mara. I'm working on upping my fiber, and I drank extra water during my treatment yesterday. Hopefully this will work!
0 -
Have any of you had a skin reaction with herceptin? I have had a very mild rash pop up about 4 days after treatment for the last 2 rounds. I will mention it to my onc next time I see him but would like to hear from others experience with determining possible allergy? I am not doing any pre-Meds like Benadryl and do not want to or start if it can be avoided.
Appreciate your advice
0 -
Livebig - I've not had a rash since my first treatment, and I think that was from the Taxotere, so I can offer no advice, sorry. But, I have heard that Projeta can cause an itchy rash.
0 -
I have occasionally had rash or itchy bumps on my forearms. I usually notice this if is more humid. This is not all the time. I moisturize my arm with Vaseline advanced repair as this has also happened with dry skin as well. It also does not happen every cycle. It is normal to me.
0 -
I haven't yet had a rash livebig, but I've only had 4 rounds so far. It is listed as a common SE on the manufacturer's website. Glad to hear that it's just a mild rash, hope it doesn't itch too much and that it doesn't get any worse. That would drive me crazy.
0 -
I haven’t had a rash from Herceptin either time I’ve been on it. 1 year. And this time 5 months. Biggest complaint is runny nose...now Tykerb is a another story. Maire
0 -
livebig: Yes! I sometimes look like I have the measles following an infusion. Other times, just like I have some acne. It really varies. Does not pop out on a fixed schedule. Sometimes on my legs, sometimes my face, sometimes by back, or abdomen.... The bumps are always red. Sometimes a few bleed. It's often itchy. Its actually been better the last couple of rounds. Maybe my system is getting used to it...? I suspect it is the Perjeta 'cause I did not have this with the Herceptin on my first go-round with Tx.... but who knows....
0 -
Hoping to get anecdotal feedback on other's treatment. Once my care team acknowledged that I was stage 4, I got taxotere+herceptin+perjeta. Fortunately, I responded well. I was NEAD after 6 rounds of taxotere and have been doing Herceptin & Perjeta since then. So far so good. My one year point is not too many months off. If I am still NEAD at one year, my doc (or more likely, my insurance coverage), wants to discontinue the Perjeta and keep me on Herceptin only. This scares the devil out of me. First of all, it was my understanding that Herceptin + Perjeta was standard of care. Second, if it ain't broke, don't mess with it! Those out there on "maintenance," would you share what you are getting? Thanks much.
0 -
Hi Lumpie, I am past the one year mark and have continued with H&P, no issues with insurance coverage for the Perjeta past one year either. It is my understanding that I will continue with both until progression. If Perjeta causes no intolerable SE's, I would insist on keeping it. I agree - don't mess around with what is working.
0 -
I would also fight to keep Perjeta. I have been NED from the neck down for almost three years. I credit Perjeta for helping to keep me this way.
0 -
yes, livebig, I get what looks like acne and what looks like bug bites on my belly. This happens on occasion with no specific regularity. Seeing someone in dermatology at MDA in June, I’ll let you all know what they say.
0 -
Hi Lumpie
I live in the UK. In that respect I am lucky because I get Herceptin on the NHS and Perjeta through the Cancer Drug Fund- ( despite this drug's proven benefit, it is not yet rolled out across the National Health Service for patients) If I had been dx 8 weeks earlier, my onco would not have been able to get Perjeta for me. It was available through the fund just at the right time for me.
So my advice is to hang on to it. Like you said you are NEAD and it's working. I'm pretty sure too that this drug is keeping me at NED.
0 -
thanks for all of the rash advice - little bugbites is an accurate description illimae. Curious indeed. Not severe enough to require a change.
I am actually just on herceptin. I took taxotere, carbo, herceptin, and perjeta prior to my BMX. Then after BMX had some more chemo and now my maintinence is just herceptin. We did not add perjeta once it became FDA approved but I always wondered if we should. Felt like a crap shoot - like so many of the decisions we are faced with do.
I am valuing all of you with input and advice. Thank you
0 -
Hi all,
I have been on H & P since Aug 17 and developed a rash in Feb or Mar that has progressively gotten worse. It's on my inner ankles, abdomen, and elbow pits. Weird, sometimes itches like crazy and other days, not at all. Very red. My onc is trying to determine which drug I'm having a reaction to, so she is temporarily taking me off one at a time until we see an improvement. The 1st one, which we just stopped for this last treatment, is Perjeta. She said the next one we'll temporarily stop is Xgeva.
My onc says I will stay on both H & P forever as long as they're working. Most patients and drs are scared to stop them, even after 5-10 years. I have had a good response so far, reduced activity of mets by about 1/2. So excited that everything is working right now! Feel very blessed.
Take care everyone and Happy Mother's Day
Jenny
0 -
Hi Ladies,
I am on H&P since April15 when taxotere was dropped after 9 rounds. I am on a daily tablet, anti Hist (cetirizine dihydrochloride) for severe itching from Prejeta. If I don't take it even for two days I start to feel itchy on my neck.
Just was to mention something that may be of interest, last September I got a rash (looked liked acne/spots) on my right thigh and leg, with a few spots on my stomach. My GP and my Oncologist had no idea what it was, they thought it was some form of reaction to the treatment, despite the fact that I had been on Herceptin and Perjeta since April 2015 and Arimidex from October 2015. In January 2018 it was finally diagnosed by a dermatologist as shingles. I had no pain/itching from it?!!! It was a disseminating form of shingles.
Regards to all.
0 -
hey FM508 - shingles? Wow! Now that is interesting thought. Thanks for shaejnf
Edit: sharing
0 -
FM508, Shingles, weird. How did you get diagnosed? Dermo took a scraping? Or just a visual? Interesting, if mine doesn't start to improve in the next 2 weeks, I will probably go see a Dermo. Man, this disease and it's drugs cause the craziest things! Sometimes I wanna just scream "LEAVE ME ALONE" and it actually work, of course. BC is a b**ch.
0 -
I am on Herceptin only since 5/17. Thankfully each 3 month scan shows NEAD. I am also on Arimidex and receive Lupron shots, getting ovaries out next month. I have had fatigue and headaches usually on treatment day. Lately Ive had tingling in my hands, might be the heat or salt intake, ttying to monitor. Last night after treatment I was achy sore all over, the pain woke me from sleep, I took tylenol. Any thoughts
0 -
Meme117 - How long have you been on Arimidex? I would say that is the culprit. AI's are well known to cause achy/soreness. I find that is worse after treatment, but I think (for me) that is because I've spent a lot of time in the car (it is a 1 1/2 hour drive each way to treatment), and time sitting in the chair in waiting room/treatment room etc. I find the achiness worse if I don't move around a lot. Now I stop and do a little bit of shopping therapy after treatment, walk around for at least an hour and it really helps.
0 -
Krenz,
I also move on the day of HP treatment. I walk for half an hour to and from the hospital. It helps because I am busy normally and hate the idea of just sitting all that time on infusion day.
I don’t have any rash issues- sorry so can’t chime in on that discussion.,
Liz
0 -
Okay, just have to vent for a little bit - when I was finished with Taxotere last September, I continued on with Herceptin, Perjeta, Lupron and Arimadex. In about October of 2017 I started to experience dizziness. As Her2 likes to spread to the brain, I had an MRI. The MRI showed no lesions in the brain...thank god...but it also provided no explanation for the dizziness. I specifically asked if it showed anything in my middle ear regarding fluid etc., and was told no., there was nothing there. Fast forward to last week...I still am having dizziness and now some ringing in my ears. I called the Mayo clinic (my 2nd opinion place) and asked if they could review my MRI for causes of dizziness. Lo and behold, I have fluid in my middle ear, causing....you guessed it...dizziness. So for 6 months I have been dealing with an issue that could have been resolved with an antibiotic. I have missed work, had trouble with driving, missed out on a lot during a family vacation, fall off my treadmill when I try to exercise....all due to dizziness. Wow, I am just totally pissed! - Rant done...thanks for listening.
0 -
Krenz,
2 weeks ago I started with a cold which turned into a middle ear infection. Overnight I become virtually deaf and had terrible tinnitus too. After 2 days of the antibiotics, some hearing came back. I continued to teach which was really fun, not being able to hear the students.
I have fluid left in my ears now. They feel crackly and my hearing has not returned to normal yet. I saw an ENT specialist. Fluid can take weeks, even months to resolve and sometimes surgery is required. I have a further appointment next week and a hearing test.
Sorry to hear about your experience. I never had dizziness. Hearing issues are horrid!
L
0
