HERCEPTIN and/or PERJETA Threads
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Hello Everyone, Haven't been on here in quite a long time- I usually follow the "itching side effect of Herceptin and Perjeta- (only back of neck, arms and hands- crazy) - just had my 3 year cancerversary of it coming back- was just wanting to hear from some people more recent then 2016- are you all still out there- hopefully all is well. I am NED- arimedex, herceptin and perjeta still every 21 days. Whats the longest anyone has been on this? My doctor says we are in "uncharted territory"- do I try just the arimedex, drop the H&R and hope my cancer doesn't return? OR do I just keep on keeping on? I tolerate everything pretty well- (itching- especially at night is the worse side effect) - just want to hear from some of my sisters instead of reading posts that are 2 years old....(or am I just doing something wrong- not exactly the most tech savvy person.
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Hi all - had my first Herceptin and then Navelbine infusion yesterday after a biopsy done by Mayo Clinic in MN revealed that my cancer in the one lymph node they could access in my stomach was HER2+. Since initial diagnosis of Stage IIIC in 2007 and then Stage IV in 2014, I have always been HER2-. So, at this time, it's possible that my cancer contains both HER2- and HER+ properties.
My question is that yesterday during my 1 1/2 hour Herceptin infusion prior to receiving the Navelbine infusion, I got the worst stomach ache. About an 8 of 10 pain. So miserable. The nurse stopped the infusion for 40 min and gave me more steroids, Benadryl and Ativan. Finally it got better and she resumed the infusion.
Has this ever happened to anyone else? It scared me as I have never had any issues with any infusion previously, and I've been treated a lot.
Thanks for your help. I look forward to keeping up with this thread.
💕 Southern
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southernsurvivor, I’ve never heard of stomach pain with Herceptin, is it possible that this was caused by your premeds?
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Hi Mae, I wouldn't think it was the premeds as I've had them many times before on my last chemo (Halaven): Pepcid, Dexamethazone, and Kytril for nausea. Of course, my stomach is the big issue anyway as that is where my ILC is located. I haven't had any stomach pains like that since yesterday afternoon. Very weird. The PA and nurse didn't think it was the Herceptin either, but there was no other variable. I won't have Herceptin now for 3 more weeks, so I'll have to see then.
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I've not had stomach pain with Herceptin. I have occasional diarrhea with Herceptin+Perjeta that is sometimes accompanied by intestinal upset. But it has never been during infusion. So sorry to hear about that! Sounds awful.
Here's another weird one: asthma. Anyone gotten asthma-like symptoms from Herceptin+Perjeta? It may be totally coincidental. But I have had some lately and the worst was immediately following my last infusion. And it has continued.
The looks-like-acne skin reactions continue. This side effects garbage stinks.
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Hi Cgull! I am having my six year anniversary this month. I've been on Herceptin only for about 5 years... Perjeta was causing too many side effects, and I tried every AI there is and they all made me so achy and miserable that I ended up dropping them. I have been NED for almost the whole time. I hate saying that because I am afraid I am going to jinx myself. I get Herceptin once a month.... but at least 3 times a year I skip a month, so I am not consistent. I've taking "vacations" of up to 6 months from it as well. I know at least 3-4 ladies on this board that were on it for 4-6 years and all NED and their doctors recommended that they stop treatment altogether, so they have. My oncologist has told me that she was one of the first ever to give Herceptin as a treatment.... almost 18 (? I think) years ago and that her patient is still alive. Yay! That's happy news...… I don't think I will stop anytime soon. I have scans Saturday (ugh) and always, I am afraid the other shoe is going to drop.... anyway, that's my story!
Hello to everyone else! I am more of a lurker on most of these threads, but it is so helpful to read about what is happening with everyone.
XO
Andi
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Hi Andi
Read your story with interest. You have done so well. I hate the AIs too. Since starting Letrozole a year ago I have developed lots of aches and it looks like arthritis in my knee. However I’m too scared to give up hormone treatment.
I am currently NED and scan again on 20th Sept.
Encouraging to hear you talk of ladies who have been of H for years and even stopped tx. Hopefully they will post on this thread as it gives us all hope that we have a good run ahead .....
Wishing you well. Stay in touch!
Liz
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Thanks for answering Andi67 - my doctor never has even given me that option of skipping treatments- I wonder if my eyebrows would grow back if I did! lol! After I stopped taking tamoxifen the first time around I dealt BC (after the 5 year mark- Hated IT! Was so happy to quit) less then 6 months later my cancer showed up stage IV- never in a million years did I think cancer would come back.... sigh....like you I am now NED- I am on Arimedex, as well as the H&P--luckily I feel pretty darn good most of the time....after you took a break for 6 months, how did you feel? Why did you go back on it? Just wondering....(oh Pet Scan scheduled for next month.)
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Hi cgull…. the same thing happened to me! I stopped taking Tamoxifen (not smart) after 3 1/2 years out from Stage 1 and my cancer came back 6 mo later. The first time it wasn't diagnosed Her2+ and the second time it was..... which I am grateful for. I never thought mine would come back either..... I felt REALLY good after taking a break for 6 mo. Almost "normal" except for the Lyrica I have to take for mild neuropathy in one foot. I went back simply because I don't feel comfortable with stopping treatment altogether, and my oncologist hasn't offered me that. It would make me nervous, I think. Most of the time I feel good even when I am on it. Very active; run, hike, bike, ski, work fulltime, etc. I have noticed this year that I am very tired....and I have checked in with other ladies who say that it can be cumulative and that you feel more and more tired the longer you are on it. It's a double edged sword! I still don't think I would quit... maybe another break. My oncologist is very supportive, but straight forward. She's seen lots of success with patients on Herceptin, so very encouraging. Oh, and my Pet Scan is TOMORROW! Ugh. Actually CT and Bone because I don't get PET anymore. I go on Saturdays because I can get in and out, but not what I want to do on Saturday morning!
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and Hi Jackboo! I just saw your note, too. I think there are other threads where ladies that have stopped altogether have posted....I know of at least 3! Very positive for the rest of us. Some stopped after 8 years, some after 4... it really varies. And yes, I stopped the AI's. I felt like I had arthritis ALL OVER. I could barely get out of bed... it's like I was 90. I went right into menopause at age 45 after chemo, so my doctor feels like I have very low estrogen anyway..... I don't know... I think she felt it was better to stop and give me my active lifestyle back, then to keep me on it. I understand what you mean, though.... I am hesitant to give up Herceptin even though others have.
My scans are tomorrow! Not happy about it. Good luck with yours.... please keep us posted. I'll be sending positive vibes for continued NED for you for a long time to come!
XO
Andi
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Andi67: Your story certainly gives us hope! My MO not long ago introduced the possibility of dropping the Perjeta and staying on the Herceptin. (I posted about it at the time.) I was not comfortable with that because I had only been on the combo for about 7 months. It's working so I don't want to risk messing that up! And I am HR- so I don't have the anti-hormone therapies working for me. I do hope that, at some point, we will have a better sense of what tends to work in terms of breaks and treatment intervals. I was very interested to hear that you get infusions once a month... I think most of us are on every three weeks... and that you take occasional breaks. Thanks for sharing your story.
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Hi Lumpie. I am so glad that I have helped. It was actually my oncologist who suggested dropping the Perjeta because of the side effects.... she felt it was what was really contributing to my neuropathy, which was a lot worse at the time. She also explained to me a long time ago that Herceptin has a double life cycle... or something like that... basically works overtime, so that if I missed a treatment it would still be working. That was back when I was completely freaked out when I was late by a week. I am definitely not advocating for once a month or even taking a break... it's just something that she has been supportive of and has worked for me. I've been very encouraged by these women that have managed to stop altogether but as I think I mentioned, I am not sure I will ever be ready to do that. I have become more relaxed about how often I get the treatment, but I am very grateful that it's been so effective, so I hope I don't come across as taking it for granted that it's always going to work.
XO Andi
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Lumpie I have lung issues since I had a surgery back in July assuming as my body still is a bit worn out after 2 surgeries, 6 cycles of Taxotere and over a year H+P. Having spoken to my Doc she suggested to slow down HP infusion from 2 x 30 minutes to 2 x 45 or 60 minutes which could help in reducing side effects. Andi thanks for your input. I am on HP since May 2017 so worth thinking of pausing Perjeta to see if issues will resolve.
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Andi- wishing you all the very best for your scan. I too want to thank you for sharing your experience and hope for long term NEAD.
Cgull- I went 6 years after my primary dx before stage 4. I was so shocked. Thought i’d beaten cancer. I wake up every day and that shock is still present.
About breaks- Andi thanks also for passing on the info about breaks. I am currently on antibiotics and my usual HP will be delayed one week. In my crazy head this is a reason to be worried, even though I know that it won’t make any difference. This journey messes with our sanity.
My scan results will be 27 Sept.
love to all
Liz
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I start Herceptin and Perjeta tomorrow. Was on Kadcyla for about 5 years and started having allergic reactions. Latest scan showed spot on rib. Also switching cancer center because they had no nurse practitioners and staff was overworked. When trouble started couldn't get a hold of anyone. Whole thing was disheartening and sad. Was with them 6.5 years. Praying I do ok on this and spot on rib goes away. Glad to find you all.
Susan
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The load dose can be rough Susan but you should find H&P fairly easy to tolerate.(actually I felt like I was run over by a truck for the first few infusions but I was in rough shape when I started it), I am hoping to be on it for a long time because my results have been impressive so far and the SEs are manageable. Sorry to hear about your cancer center, that's got to be a tough switch to make but completely agree with you on the reason. That's one stress we don't need and should be completely avoidable. Are you uppitycancerpatient on twitter too?
Liz you're back on antibiotics? Hope it's not your ear trouble again, but sad to hear you're having trouble with anything. Have your SEs settled down since you restarted H&P?
I think I just got my first Herceptin rash, thankfully not too bad but a few hours after my infusion yesterday my face got several small itchy bumps on my forehead, cheeks and nose.
Good thoughts for everyone getting scans!
Lori
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Hi Susan
I wish you all the best for this regime and that you enjoy a long run on HP. Your first infusion is today so do let us know how you get on. This board has been very helpful to me as I navigate this path, hopefully towards continuing NED for a while!
Lori, good to hear from you. I have a delayed HP tomorrow. Antibiotics again for an infected ingrown toenail. I seem to be plagued by these annoying, minor ailments but of course I’ll take that any day over the alternative...
Your rash may go off in time Lori. Some SEs lessen over time. How’s your energy level? I have just gone to part time. Glad to have 2 days a week off.
Liz
P.SIs anyone taking metformin or other off label drugs?
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Sorry Liz, seems like you can't catch a break with that kind of thing lately. My energy is level improving overall, but the fatigue and headaches are still pretty bad for a few days after each infusion.
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Lori, yes, I'm uppitycancerpatient on Twitter.
Liz, I had infected ingrown toe nails too after Taxol. I finally gave in and went to see a podiatrist. Glad I did. That was a suck after effect.
So at the infusion center for loading dose of h and p. Half way through Herceptin, started having allergic reaction (chills, runny nose, back spasms, low blood pressure, nausea). They stopped things and gave me anti nausea and steroids. Crap. Next dose will be half of what this is. Going to talk to doctor about premeds. This is first time during this whole thing when I actually threw up. Dang. At least their triage nurses answer the phones and I was just told the nurse practitioners will see people last minute. Better than it was.
This morning, day after, I called an made an appointment with oncologist, and now am on phone waiting to make an earlier appointment for next infusion. I'm hoping we can get into a groove here of me coming in Friday afternoons at 1 or 1:30 so have time deal with reactions, if they happen. Weirdly this new place kicks patients out at 4;45 pm on the dot, which would mean a trip to the ER and that sucks. Other place would allow patients to linger a bit while the nurses charted. This new place's policy is not great.
Glad I found you all. May we all have uninfected toes and not throw up.
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Hi Susan
Sorry you had issues with HP. Would a slower infusion rate help? I have P over 30 minutes, a 30 minute observation period and H over 30.
I hope pre meds will help. Scary to hear of the cut off time period for the end of clinic. The runny nose and mild aches are common but I have not had nausea or the drop in BP.
Feet- I will eventually need the toenails removing. Can’t wait for that pleasure!!
I’m now waiting for Richard to grab a lift home. Fatigue beginning to bite a little. Looking forward to a good meal, my pyjamas and the start of the weekend.
Love to all, hope you get this resolved Susan.
Liz x
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Ugh so sorry to hear that Susan, what a horrible experience! I've never had nausea or low blood pressure from H&P, but I did get severe alternating chills and hot flashes the first few times, although it didn't hit me until that evening, and my nose has never stopped running since I started H&P. What infusion rate did they do? SEs are less severe with a longer infusion time, my place won't do anything less than 60 minutes each to minimize SEs (with a saline flush in between), and I know some women who are doing 90 minutes each because they have trouble with anything faster. Might be worth discussing with your place. Makes for a really long day after labs & vitals, consult with MO and then infusion but I think it's worth it if it makes SEs easier to deal with. I schedule my appointments for first thing in the morning because I'm usually there about 4-4.5 hours, I would hate feeling like I'm being rushed. Claritan can help with the bone/joint aches.
Hope everyone has a great weekend!
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I've been getting some form of Herceptin for 6 years now so that affects things. Have another appointment with new oncologist on 9/24 so will talk about premeds and slowing things down. Next infusion is scheduled for 10:30 am on 10/5 so that will give plenty of time to deal with stuff. Appreciate everyone's support.
Liz my worst ingrown nail was on right big toe. Podiatrist took off affected part of toenail and nail bed and that did the trick.
Rest well.
Susan
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Has anyone had issues with Perjeta and diarrhea? Does it eventually get better? Appears to be starting for me and I could really use a break. Ugh.
Hope all are well
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Good morning Gonegirl- you may find certain foods make the diarrhea worse then others, for me triggers are dairy, and high sugar foods, holy smokes, let me eat Ice Cream and it is "Katie, bar the door" moment- or "bar the bathroom door" is more appropriate- and keeps me running (literally )- - sometimes tho a girl just has to have her ice cream ....
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I think last night it was garlic that was the issue. Either way, it was an unpleasant night. Good to know it's something I can manage. I was bummed thinking I might have to deal with this stuff every day. Ugggh.
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For me it's just a couple days out of each 3 week cycle. It usually hits about 4-5 days after my infusion, but it's manageable. It's nowhere near as bad as my last 3 months of taxol when I had uncontrollable diarrhea every 20 minutes round the clock for eight days straight!! After that nightmare experience I guess my tolerance level is fairly high, but I'd put it squarely in the mild category. Dairy seems to make it worse but I don't modify my diet since it's only for 2-3 days.
Thought I was going to be one of the lucky ones who didn't have a problem with it, but I forgot that opioids have a constipating effect that was balancing things out. As soon as I got off the opioids the D started.
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hI gonegirl: I take two imodium a day. Down from 6 over the last six months. It does get better! I have had rashes and itching but that went away. I hope you feel better!
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yikes. sounds like quite a trip, Lori. I took an immodium last night and that seemed to help. today i'm taking it gentle on the food. no garlic. thank you everyone for your incredible help.
susan
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Hey, all: Went looking for this info. Apparently nausea from Perjeta alone is not an unusual side effect. Here is the journal article below with the info. My oncologist kept saying she'd never seen. I'm tempted to plop this in front of her, but I won't. The new oncologist is good but a bit my way or the highway. Right now she's pushing using steroids to deal with the nausea and I have a nasty reaction to steroids (no sleep, etc). She did cut the ordered dose for steroids, but won't budge on their use. Debating how to respond to that. Frankly, I'd rather throw up than get steroids. I will be get the anti-nausea med Emend and Lorazepam as a pre med. So frustrating.
Susan
Medicine (Baltimore). 2017 May;96(20):e6870. doi: 10.1097/MD.0000000000006870.
Safety and efficacy evaluation of pertuzumab in patients with solid tumors.
Zhu C1, Ling W, Zhang J, Gao H, Shen K, Ma X.
https://www.ncbi.nlm.nih.gov/pubmed/28514302
RESULTS:
Fourteen eligible studies were included in our final analysis. From the results of our analysis,
diarrhea (56.9%, 95% confidence interval [CI] 49.6%-63.9%),
nausea (34.0%, 95% CI 27.7%-40.8%),
and rash (25.6%, 95% CI 20.8%-31.0%)
were the most common adverse effects in pertuzumab alone and pertuzumab-based therapies.
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Thanks for the proof gonegirl. It is so ridiculous the way they deny SE's. It is nice to be validated. My cancer seems to be growing. I am set for a biopsy of my lung. It was expected but I am not thrilled! On we go.
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