Herceptin - Quick Side Effects Poll
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I had 18 months of Herceptin 15 years ago and I honestly did not have a single side effect. My heart tests were also unchanged throughout. I was pretty young 33 at the time so maybe that helped.
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Taxol kicked my butt, but Herceptin gave me no side effects that I could tell. My heart did fine through it, too, so I was grateful.
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I haven't been having any SE from my herception (every 3 weeks). Got a question though.
Have any of you heard of someone getting those herceptin infusions more frequently, like every 2 weeks?
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Sweetp, I don’t know if anyone getting Herceptin every two weeks but I’m delaying an infusion in May by a week, then resuming my usual schedule. So far no one (MO of staff) have mentioned any potential issues with it. I’ll update if something changes.
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I have been on Herceptin/Perjeta for almost a year with 3 treatments remaining. The one thing that I noticed was if the infusion took 1 hour to administer I would have joint pain and extreme fatigue. If I had it administered over a 90 minute drip I had only slight fatigue at night after work.
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Sweetp, I have 4 Herceptin treatments remaining. I go weekly. SE on the every 3 week treatments were too much for me. I feel better when I receive weekly doses. My SE may be associated to combination with Armidex. Worst is constipation or diarrhea but mostly constipation causing fissures and hemorrhoids. Other SE’is include joint pain, stomach pain, gurgling, when I eat or nausea if I don’t eat, and fatigue. It’s been close to a year, almost done, 4 weeks. I’m 56 but feel 75 or 80 some days. Looking forward to feeling better, and spring and summer after long MN winter
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Sca: Sorry that you are having SE at all. I have not begun taking Armidex or anything else, yet. I should see my MO this coming Thursday, so I'm going to ask if they can ramp it up to weekly. Come June 1, I'll have a new deductible and insurance and I don't know if I'll be able to swing it this time. That infusion isn't cheap and I believe it to be more expensive than Armidex, etc. Thank you for posting. Hugs.
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Hi Ladies haven't been on here in a while but seems the same SE I'm having some of you are too. Went to MO and they asked was it joint pain or bone pain.....Isn't it all the same...Anyway she said what I was complaining about was joint pain. After a bone density test she said I have Osteopenia and now I have a hypo thyroid. Oh my goodness. These drugs. kill one thing and start something else...Sorry just real frustrated. Thanks for the tip on the Turmeric will have to get some and try. Any other suggestions ladies?
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I’m on treatment 10 of 17, every three weeks. Finished chemo in February. I have diarrhea about midway through my cycle, and lots of joint pain in my legs. I also get swelliing in my ankles midway through. And I could swear the neuropathy in my feet is getting worse thou the neurologist says it’s from the carboplatin. I feel like I’ve aged 20 years. I was diagnosed triple positive in sept 2017. I’m 64
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Barb - are you doing just herceptin? or also perjeta? I was convinced it was the perjeta that caused my diarrhea. Be sure to ask for extra saline mid-way if you're not getting enough fluids. I'm confused that you say you were diagnosed triple positive but your tag line says HER2+ and you're on herceptin??
Yes the neuropathy is most likely from the carboplatin or the taxotere. If you had both - double dose. Neuropathy does tend to wax & wane - and yes can grow worse. My neuologist said it "could" get better over two years. However she cautioned me that meant only "better" from post chemo & I would probably not return to normal before chemo.
I added magnesium 250 mg twice a day for leg cramps. It has helped.
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Barb, what I'm about to say isn't advice, but rather my little story. I began on TCHP last July, but chose to drop the Perjeta after 2 full TCHP chemos (once every 3 weeks, first two). I was having wicked BIG D and had to wear depends to work. Yes, I worked and luckily there was a bathroom nearby. Naturally, I was also taking two prescriptions and an over the counter to help keep things in check, but it didn't work for me. Also, the side effects from one of those wasn't going to be good for work. That BIG D didn't stop for me until two days before the third big Chemo appointment. During that first six weeks, I went back in for a couple of fluid infusions, they helped. For the first infusion of fluid, and the fact that I was so dehydrated, I took that day off. The second one wasn't quite as bad so I went in to work after the infusion (later that day). My MO told me that the D could continue despite going off of Perjeta, but I think that he was covering his you know what.
All in all, I only missed two days of work with that business. Another couple of days with nausea during the last six weeks of full chemo. Hind sight? I wish that I could have taken off work during that whole thing. That's a story for another day.
P.S. I also had swelling in both feet/lower legs. My MO and his staff helped me out with that. Also, it looks like we have a similar diagnosis, etc.
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After my diagnosis of IDC, I began a series of 6 chemo treatments every three weeks in August 2017. The side effects began immediately, including insomnia the first two days after each treatment, diarrhea, uncontrollable runny nose, itchiness/dry skin, blurry vision, shaky hands throughout. My nails went to hell and still have not recovered. Toward the last treatment, the fatigue was incredible, I could have slept all day and still needed more sleep. My hair (head, eyebrows/lashes, legs, arms, girly parts) fell out 13 days after the first treatment. And of course, chemo brain. When the treatment ended, the side effects began to subside.
I was given six weeks to recover from the effects of chemo before I had a double mastectomy with immediate reconstruction on January 22, 2018.
In February 2018, I began targeted therapy with herceptin only, scheduled for a series of 12 treatments every three weeks through September 26, 2018. According to my ONC, the Herceptin treatments would be a breeze, no side effects, my life would return to normal. Wrong. It started with insomnia the first two days after the treatment. He finally had to prescribe Ambien so I could sleep; nothing over-the-counter would touch it.
The insomnia led to two very weepy days after each treatment due to lack of sleep. The chemo brain and the runny nose began again. After 6 treatments, my hands began to shake again, my vision became blurry again, I started experiencing neuropathy in my hands and feet (which was something new) and the chemo brain was getting MUCH worse. I mentioned it to my ONC; he maintained there was no way it was the Herceptin, but offered no alternative suggestions. His attitude made me feel like a dope for even bringing it up.
After 7 treatments, I began experiencing spells of dizziness serious enough that I questioned my ability to drive. When I had the dizzy spells, I could feel my heart beating in my eyes and my ears, making me wonder about blood pressure/heart issues. I started getting the occasional itching spell, but not as serious as before.
I met with my ONC before my ninth treatment today. I explained everything that was going on and asked him about the results of my most recent ECHO. (I have had an ECHO every three months since starting my treatments.) He said neither the ECHO or my blood tests showed any indication that there was anything amiss; that Herceptin would not be causing these problems and that I needed to see my primary physician and perhaps be tested for thyroid or auto immune issues. This was not what I wanted to hear and since it is not the first time he has told me what I'm experiencing is not a result of my treatments, I don't think he really has a clue what the side effects are and he's just covering his butt. The nurses that give me my treatments all agree that everything I mention is common.
I only have three more treatments before I am finished, so I will suck it up and live with it. It is not debilitating, it is just annoying. After my final treatment, I will have surgery to remove my port and I hope I will be done with this.
It has not been a fun journey, but I have maintained a positive attitude, have worked nearly every day since my diagnosis and have a full head of pretty gray hair which I did not have before...I call it my Jamie Lee Curtis look!
I am glad I found this blog so I know I am not crazy when it comes to these side affects. I am happy that I have not experienced any joint/bone pain; nor have I had any diarrhea this time around. Thank you all for sharing your experiences. We all walk this road together; I will add each and everyone of you to my prayers. If God brought us to it, God will bring us through it. Bless you all!
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Welcome, Gebert! We're so glad you've found our community, too. We hope you continue to find support here, and thank you so much for sharing your story!
The Mods
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Hi all. I am hoping someone here has had some experience with what I am going through. I am Triple Positive diagnosed December 2016 with Stage 2 IDC. Original path came back HER2 negative so treatment was A&C for 4 treatments plan was for Taxol for 12 weeks, after 4 weeks no tumor changed so MO decided to remove tumor. Path and FISH came back HER2 positive. Had another round of chemo Abraxane 12 weeks, with Herceptin and Perjeta every 3 for a year. Radiation for 6 weeks. Rads finished in December, Herceptin and Perjeta finished in June. Chemo done October 2017. Was supposed to have DIEP flap recon surgery today but several people noticed a tic of sort around my mouth, where I am pursing my lips or have a bottom lip quiver. Red flags everywhere, Plastic Surgeon wouldn't operate, MO ordered a brain MRI (which we realized we couldn't do because of expanders) ended up with a CT of the brain which was clear. Now I have to see a neurologist. Not sure what this is coming from... is it a Bells Palsy, nerve damage from these drugs...which one??? Also on Arimidex. Anyone have anything similar some type of nerve damage to the face? So frustrated right now, now my timeframe for surgery is pushed back more than a month due to PS schedule.
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Hi,
I finished Taxol on June 26 (weekly, along with Herceptin). The next week, I started Herceptin only, to continue every 3 weeks for 1 year total. So...nothing in my system except Herceptin right now. Round 3 is next week. They infuse over 30 minutes with no pre-meds.
I didn't pay much attention to the side effects on July 5; after all, I'd just finished Taxol. Well, so it's now been 6 weeks since I've had any Taxol.
I'm having the following side effects on Herceptin only, starting with round 2 (July 26, a full month after last Taxol): Nausea (comes and goes), headache (usually first day or two after), peripheral edema (hands, feet), joint pain (hands/knees/ankles). This week, although my head hair is growing, I suddenly lost my eyelashes and eyebrows. Everyone is saying it's a delayed result from the Taxol. I simply don't know. Haven't had an onco visit since June, but see new one on 13th. I've been made to feel like a whiner about the Herceptin side effects, but this is not the "cake walk" I'd been told it would be. I pre-medicate myself with Claritin, Tylenol, and 4 mg of Zofran. I take Tylenol and Aleve for the joint pain. I try to walk half a mile to a mile every day.
LVEF is fine, heart is fine, lungs are fine. I know I have to keep taking Herceptin, but I know that after I start an AI, I probably won't be able to move. I wish someone had just been honest and let me know there "might" be side effects instead of brushing aside my concerns. I could have mentally prepared and been ready for it.
Dee
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Cindy929, welcome to our community. It is very frustrating to have your treatment postponed, but very happy to hear that your brain scan was clear! Have your doctors crossed checked your medications that could cause these symptoms? Here is a list of typical Treatment Side Effects. Please keep us posted.
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Astyan - Switch the herceptin to a ONE HOUR infusion. That made a great deal of difference for me. Also start Claretin the day before and continue for at least a week. That worked for my joint pain with Neulasta but no guarantees for Herceptin. I took aspirin for head aches, but I know they can add things like Tylanol to your infusion - as well as something for anti-nausea. I agree - the hair loss may be caused by delayed taxol. I've never heard of anyone losing hair on Herceptin only.
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Cindy - sorry to hear about this strange tic or quiver. I think a neurologist is your best bet to get to the bottom of the mystery so you can move forward.
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I'm going to ask about infusion time increase, but I doubt they'll agree. It's a busy center and while the staff is nice, the place is depressing and definitely a “factory model." No privacy, no real tlc, treatment processes very standardized. I have to do my own premeds with Herceptin—they don’t give anything unless you’re getting chemo with it. I’m using Claritin, Zofran, Tylenol, and Aleve.
Dee
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Astyanax - My center was also wide open & very busy. But it made a tremendous difference for me. Get your doc to tell them they must try this with you. I had to argue every single time for a year, but they always did it in the end.
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wow even your own premed's that is tough. Tell them you had a flu like reaction and insist don't ask. It's really I nly 30.more minutes so it's worth being a squeaky wheel.
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Met new oncologist today who said my aches and pains have nothing to do with Herceptin--they're just leftovers from Taxol, and that Aleve and/or Tylenol should resolve them. They don't have the "seat time" to reduce infusion. We also had the AI discussion (Arimidex), which is terrifying with the pain I already have. So...I just don't know. Mostly just stopped in to say thank you to all the nice folks here who have been helpful. You had good ideas--I'm just stuck in a place with no options. Sigh.
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astyan - I'm sorry your medical providers are being obstinate. In fact, you have hired them & YOU ARE PAYING THEM - so you should be able to insist that they at least try it one time. Good luck.
Can you get a second opinion from another oncologist?
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Dee—I had weird muscle pain the day after my first H only but ibuprofen took care of it. I'm a big fan of ibuprofen—I take three at a time (which was the old prescription strength) whenever I need OTC pain relief. I also learned relatively recently that you need to take that dosage to get the anti-inflammatory effect.
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I was diagnosed with Stage IIIA (4 of 19 nodes) , ER+, PR-, HER2+ in May 2017. I had a lumpectomy and axillary node removal surgery at the end of May. My therapy included 4 rounds of A/C followed by 12 weekly rounds of Taxol. I also began Perjeta and Herceptin with the Taxol, every third week. I finished Taxol in Nov. and ended Perjeta in early Jan. Did my 28 days of radiation therapy, while continuing with Herceptin. Finished radiation in February of this year and began my daily Arimidex regimen in March. Herceptin infusions ended in mid-August. I had my share of side effects with chemo, as expected. I did start to feel better a few months after completing radiation (energy beginning to return, etc), but then I began to feel ill again around May, certainly not as bad as chemo, but extreme fatigue, and a general feeling of being unwell. I also had headaches, severe muscle cramps, and a constant cold. My blood counts (WBC, RBC, HGB, platelets), which had been rising, also began to fall. Each time I was tested, the numbers looked a little worse. I was unable to exercise, sometimes walking around my house was exhausting. My oncologist, who, by the way, I love dearly, expressed surprise when I told him that I was feeling so ill, and he had no explanation about my blood counts. I was too far removed from chemo for those drugs to be responsible. He was convinced it was not the Herceptin, because the drug companies tell our doctors that the drug won't cause these issues. He felt perhaps it was the Arimidex, but that drug is not supposed to affect the immune system. I was beginning to believe there was something wrong with me because I was feeling so lousy. Had a breast MRI in June, and everything looked good. My symptoms continued until a month after my last Herceptin infusion. Miraculously, I began to feel better...more energy and I was able to begin a walking program to start to regain my stamina. My blood counts also all returned to the normal range. The cold symptoms, while not gone entirely are MUCH better. I want other women out there to know that we are ALL individuals and our bodies will react differently to these chemicals. There is no "average" woman. Some women will sail through Herceptin with little or no problem. Others of us will have side effects that can definitely affect our quality of life. Don't think you are crazy if you do, or begin to believe the disease is back. If you are having issues with the drug, know that there is recovery on the other side. God bless!
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It just amazes me how often we are blown off by oncos saying they never heard of side effects with Herceptin and Perjeta. Do they not ever read anything?
My Doc has increased my infusion time per my request and I am taking weekly infusions with 1/3 the dose each time. I felt fluish (if that is a word) all the time. Joint pain, continual diarrhea, terrible muscle cramps etc....I’ve been on weekly for a couple of months and it has helped immensely.
I’ve been on Herceptin and Perjeta for over 4 years and 6 infusions of Taxotere at the beginning.(Stage 4)
I hope you all get some relief. H&P is not the cake walk for me as it is for many women
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I just finished a year on Herceptin in Aug. My side effects were minor. Drippy nose and lose stools throughout (sometimes pretty bad diarrhea for a few days). My nails are thin and break easy. My hair is coming back, but growing slower than those people I know who did not need the Herceptin. The one side effect that bugs me the most is itchy shins--mostly at night. I have scars from itching them in my sleep.
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hey there! I just was diagnosed with Bell’s palsy last night. I went into the Er to get checked out due to numb left side of face. I woke up today and it’s even worse. They couldn’t do an mri because of my expanders also. My ct was clear so they sent me home with prednisone. The Er doc seemed puzzled so he’s sending me to see a neurologist. It’s sunday so tomorrow I plan to call my oncologist to fill Her in as well. What ended up happening with you?
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I’m HER2 triple+ with a chek2 gene. Went through chemo (TCHP) , finished that in June, had a full mastectomy in Aug and now doing Herceptin until next February. I have horrible muscle pain for days after if I work out and my legs swell. I have charlie horses that come on for no reason and last for 10 min or more sometimes and the muscles around my eyes keep twitching. I can only take Tylenol and it doesn’t help that much. To top it all off, I have insane itching/pain from what I think is neuropathy. My oncologist says this isn’t from Herceptin. I’m getting so frustrated and don’t want to continue this treatment. It just breaks you down mentally.
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km - You might try adding more Magnesium for the charlie horse/muscle pain. I added 500 mg for awhile & it worked.
You should make an appointment with a neurologist to discuss the neuropathy. They can do something for the pain but not much for the loss of feeling. It's related more to the previous Taxotere & chemo drugs than the Herceptin.
I have insane itching ALL the time. Again, not related to the Herceptin. I would recommend a dermatologist. They have several things to try - including cortosteroid creams. I've presently started Oolong tea since I read that can calm itching.
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