Herceptin Side Effects?
Hi, all,
Doing well overall, especially having finished chemo. Over a week after chemo (weekly Taxol and Herceptin), I switched to Herceptin alone (every three weeks, but they did the first Herceptin-only dose about 9 days after chemo). I was told it was nothing...a cake walk...tolerated well...practically no side effects aside from possible heart issues (I've had 2 echos now, LVEF is okay). I felt pretty good that morning, and I even drove myself an hour to the infusion and an hour home.
Did fine during the infusion. However, about 2 hours after I got home, I developed the most stinking bone pain ever--legs and hands. I had it previously with Taxol and Herceptin, but I'd no idea it could happen with Herceptin alone. I've not had any Neulasta. Admittedly, both RBC and WBC are low (WBC low normal, RBC just below normal).
I knew maybe to expect mild aches and perhaps a headache. Thankfully, I felt better by 24 hours later, but is this something common? Will I need to "prepare" for it every 3 weeks? I knew about the cardiac risks, but *no one* warned me that I might experience pain with just Herceptin. Don't get me wrong--I'm grateful for it! But I like to prepare or at least know to take something for pain, etc. before it hits like that again.
Anyone else have this happen?
Thanks,
Dee
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Hi, I had herceptin only for 2 cycles last year after my 6 cycles of my heavy Chemo was completed(TCHP). It was 3 weeks after though, not 2 weeks, and the only side effect I had was very loose stool the next day, they did give me benadryl IV and pepcid IV before the herceptin. And then, perjeta was added to the herceptin after 2 cycles. When they added fluids and infused the Herceptin for 60 minutes there was virtually no side effects. I do have more neuropathy and localized itching, as well as very weak nails from the perjeta.
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Hey Dee—I'm about a month behind you but was not aware until my last meeting with my MO that the every-three-weeks dosage is much higher than the weekly. (I'm not sure if I locked down that it's actually three times as much but I *think* it is.). That and the absence of premeds might give you a little more kick from the H only than you were expecting. I'll be following this thread to see what others say.
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The first few months of H&P were very hard on me, I felt like I had been hit by a truck for a week following each infusion and it wasn't until the 3rd week of my cycle that I felt somewhat "normal". The bone pain in my feet and legs was absolutely brutal, chills/hot flashes, and then a horrendous headache 48 hours after each infusion. Many of us have been told that the bone and joint pain is because Herceptin further depletes estrogen (I am post-menopausal and was surprised that once again I had to suffer through hot flashes and night sweats!). But my last two infusions were fine with very little side effects, so I think my body has adjusted to it, or maybe now I'm completely out of estrogen haha!! My infusions have always been 60 minutes (each) and I get no pre-meds.
. I'm back on gapapentin now because the burning in my feet was unbearable at night. The gabapentin at least makes it bearable enough for me to get some sleep, but I am concerned about it getting worse.
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Hi carmstr835,
Yes, mine was only 30 minutes--pretty dang fast infusion--so I wonder if that could be part of it. I won't be able to take the premeds since I'll have to drive myself (I snored through my chemo, thanks to the Benadryl). I wonder if I should ask about 60 minutes vs 30?
Hi Ingerp, yep, it definitely looked like a larger bag than the "usual" one that they would do before the Taxol.
Hi, Lori--I'm so sorry about the side effects for you. Maybe I should be patient and see if after the next cycle or two, things go better. I wish someone "medical" had said, "Hey, you might have these side effects from the Herceptin..." I was only told headache, runny nose/sniffles, mild aches. I had no idea about the estrogen depletion (which is actually *good* in my case, since I'm E+), but I can certainly see how it would cause many more side effects...
Thanks, everyone, for your thoughts!
Dee
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Dee you should definitely insist on 60 minutes, many women here have reported that there was a big difference in side effects when they went to at least 60 minutes (a few have said they are doing 90 minutes). My oncology nurse told me the same when I first started it, that 60 minutes was to minimize side effects. Try Claritan for the bone pain, it was recommended on this forum and did seem to give me some relief. Hopefully you'll be like me and just have trouble with the first few. Wish you the best!
Lori
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Thanks, Lori, I'm going to ask about this on Wednesday at my MO appointment. I want to first make sure that it is indeed the "larger" dose (though I've not heard of anyone just getting 1 week's worth every 3 weeks), and then...why not a 60 minute infusion, which does seem to be the standard? I'll keep you posted.
Dee
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my year of herceptin kicked my butt. I had a lot of fatigue and other symptoms. I have no idea about bone pain as they put me on aeimidex at the same time. My ache in my ankles,knees and hips was unbearable. It was like I was being crushed when I walked. I finally had to go off of arimidex and on to tamoxifen but that was right around when I finished herceptin. Now I am wonderingabout the herceptin bone pain connection ?????
I have a few ideas. First ask them to run the infusion SLOW I think it is over 1 hour. Doing this significantly helped. You could also ask for benadrylfore the infusion or better yet just take a 24 hr Claritan every 12 hours that day similar to the nuelasta recomendations.
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Hi, exercise_guru,
Yeah, I'm a little miffed that I wasn't given more of a heads up about Herceptin's SEs, aside from the cardiac ones. I dread starting my AI, since I already have spinal arthritis (2 surgeries there, 3 nasty herniated disks, but they're better now) and spinal stenosis. I am taking the Claritin (got that tip when I was doing Taxol and Herceptin), but I was thinking it was mostly the Taxol. I'm asking today about what dose I'm getting, and the infusion time. Thanks!
dee
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Hi Dee,
I had my 2nd dose of the every 3 week Herceptin 2 weeks ago. I have been suffering from horrible headaches ever since yet my oncologist claims Herceptin has NO side effects other than the rare heart issues. And yet you were told possible headaches?
Wendy
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Hi astyanax66,
I am so sorry you are having this extreme bone pain. I wondered when you wrote your first post about this if you had any other underlying pain and then saw in your last that indeed you have spinal arthritis. I had severe bone pain with Herceptin. It came and went in different parts of my body, primarily ones where there had either been injury years ago, or where I had other medical issues. This seems to be common. Spinal issues can cause referred pain in areas that you might not expect. Most MO's won't go into details about side effects in order to just see where you fall out, and then they might address them (or not). We lengthened my infusions to 60 minutes and ultimately to 90 which is specified in the manufacturer details as an option (90 is the longest). Most infusion centers want you in and out and it costs them more to have you there longer. But you can insist. The pain intensity also varied for me infusion by infusion. It was not linear. Knowing that was helpful. I used vicodin for the strong pain for about 2-3 days once it kicked in (usually about day 2 post infusion). This helped a lot and I didn't need that much. Once I finished Herceptin that kind of pain went away. Best of luck to you today, you may be in the chair as I write.
Sending much hope!
May we all be well
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This makes me nervous about my first HP only infusion next week. My schedule has me there for 2 hours total so I expect they will go slow. Now seeing these posts I will go ahead and continue taking Claritin for the week of each infusion to hopefully avoid any pain. I was really hoping to drive myself to and from these infusions and not have too many SEs to deal with. I will let you know how it goes.
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Hi Sidalee,
Well done getting to your first HP next week! One reason the MO's don't mention some of the side effects folks get is because they don't want you to worry. They are not that common and that is why they don't list every single little thing. What I noted above as being more common was my experience speaking with people who have had areas of previous injury or autoimmune disorders that have a history of pain. If you are one of those then you may indeed want to keep a closer eye on yourself. But most people do very well. If you can go in with an open mind, trying not to expect much it will be helpful. Anxiety can increase pain, so the more relaxed you can remain the better. Meditation, relaxation techniques and even anxiolytics like Ativan can be of great help. But good to know some tricks in the back of your mind to help if you do end up having a rough time. If you look at other posts about Herceptin side effects you will find a lot of people that have very few, if any problems (especially compared to other chemo drugs). Best of luck!!
Sending much care and hope your way.
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Be careful with H and P! I had over 50 infusions before I had a infusion reaction. Same drugs THEY say doesn't have side effects.
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Thanks for the feedback, couragement, I will do my best to go in relaxed and not worry too much
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Sooo, here's what happened at my "appointment." DH and I both took leave time to make the drive (hour each way), and just as we were leaving, I checked my hospital app to see if it was a 1 PM or 1:30 PM appointment (we thought we might drop by the bookstore if it was 1:30). The appointment had vanished. So, I called. The oncologist (working on a fellowship) just...left. I do not know for what reason, and maybe it's a good one. But yikes, that would've been such a huge waste of time and money for us! I was furious and refused to reschedule on the spot. I needed to look at my calendar. They called me back at 4 PM and scheduled me after radiation appt in early August. But that still left my huge list of questions, so thankfully, I sent them to the nurse navigator who got them to the NP I actually saw most of the time instead of the oncologist. Fine with me; the oncology fellow had the personality of a turnip.
She wrote this AM and responded:
1) They are not following Persephone results at present because it was a UK study and has not yet looked at 10 year DFS rates. So, a year of Herceptin is still their standard of care.
2) Infusions are always 30 minutes because that is the standard protocol they follow. (And yeah, I'm sure it has to do with patient load--it's always packed full of people).
3) Will not get any followup mammograms until rads are done in early Sept.
The only side effects I was told about were possible mild headaches and possible diarrhea. I've had headaches (only lasted a day), fatigue (just in afternoon), and bone pain (only a few days after treatment), and Sidalee, it's not this way for everyone. I think if I'd just been *warned,* I would've brushed it off entirely as not too bad! But I kept hearing, "This is nothing--piece of cake--there aren't side effects, really--you'll sail through this since you did Taxol...blah blah." Kind of false hope, I guess.
It's been over 2 weeks since my last Taxol, I've not started radiation nor an aromatase inhibitor (AI). So--the next infusion of Herceptin on July 26 will be the real "test" since it'll be a month past Taxol and the only thing really floating around my system will be the Herceptin. I do have some stronger pain meds, but I'm worried about taking them because a) Not sure if I could get a refill--they need to last through all my infusions (January), and b) Obviously I don't want to take them unless the pain is extremely bad; I don't want to rely on them in any way. I'm simply hoping the Herceptin SEs will subside over time.
I rather resent not being told about possible SE. I would rather someone say, "Possible SE include a, b, and c; however, you need to remember that most of these either subside or do not happen in all patients. If you have an SE, please let us know, and we'll help you with it." I was told Effexor was their "go to" with AI pain. I'm not cool with being on an SNRI for pain. (I can't take Gabapentin or Lyrica). But to be fair, if I've had a serious SE, I've usually gotten assistance.
You have to remember also that I went from "Lumpectomy with a few weeks of radiation" pre-op to "Lumpectomy, port implant, 12 weeks of chemo, 1 year of Herceptin, and a few weeks of radiation" in a period of just 3 weeks back at my post-op followup (back in Feb). It was a lot to digest. The long drives for treatment and difficulties I'm encountering at work have added to my stress. Without those, this would be easier. (I'm on FMLA, but working FT with time off for treatments--we have to take leave time concurrently with FMLA, either sick leave, or when it runs out, annual leave. Yes, this is absolutely legal).
Thanks for letting me gripe!
dee
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Ugh, Dee. I’m voting two bowls of ice cream for you tonight.
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Thank you! I'm staring at Ben and Jerry, lol.
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Hi Wendy, I’m sorry I forgot to answer...yes, I was told I might have a mild headache. Very clearly told that, for what it’s worth...
Dee
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My nose drips, particularly when I start moving around. I don't mind it much though. I hope it will help tp flush out any cold or flu viruses that come my way.
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Had my first HP infusion on Tuesday and so far I am so relieved. I had a bit of nausea overnight and a little fatigue the next day, but so far this has been a blip compared to chemo. Fingers crossed that it stays this way.
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Really good to hear, Sidalee (and I won't even be getting the P!).
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WC3, I had the same thing. My nose started dripping with chemo, through my Herceptin treatments & really hasn't stopped. I think it may have slowed down some. But it's still drippy especially, like you said, after I begin walking or moving around. I just keep kleenex with me at all times. I feel like my Grandma! Lol
I'm glad your side effects are slight, Sidalee! Mine were, too. I just had some sleepiness in the afternoon after a treatment. But nothing like chemo. With it I had chemo on Friday and had to take Monday off too because I was completely exhausted!! I finished my Herceptin treatments the end of May!! You'll be there soon!! Hugs to you!!
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Sidalee, that's great!! I hope the good news continues.
Dee
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Sidalee,
Look at you! So glad it went well. I hope today is still feeling alright. You are on your way!!
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dee- I had six rounds of tchp followed with radiation and after 9 radiation treatments began H&P
every 3 weeks. I've had two rounds of h&p with no side effects. I received the herceptin for 30 minutes and then perjeta for
30 minutes. I no longer have to receive the 30-minute rest between herceptin and perhaps because I've never had any side effects from these medications. I have refused the pre-med Benadryl because I go to work after my infusions. This past Friday, I had my radiation treatment at 8:30 saw my doctor at 9 a.m. and infusions at 10 a.m.
MO did review possible side effects which included diarrhea, headaches, neuropathy, muscle and bone pain and fatigue. He also warned me about possible long-term effects with cardiac function. I've had two echos with no changes. So far my heart remains in excellent condition. Being an occupational therapist I'm very much aware of peripheral neuropathy and am vigilant about any changes in my body. I have completed 12 radiation treatments with 13 more to go. I have 7 more months of h&p to go. I work 6 days a week and exercise daily I hope for the best everyday. Yes, there are moments. Beatmom and Minus2 are very knowledgeable and give excellent feedback.0 -
Hi Dee and Everyone,
I completed my 12 weeks of taxol and herceptin with little or no side effects but fatigue. However, I am scheduled to have my second 3 week Herceptin only drip on Monday (7/26) and I am not sure I want it. Ever since my first infusion of Herceptin only, I have had horrible swelling in my toe joints and feet. I am taking claritin daily and icing my feet but they still hurt and are swollen most of the time. It is very difficult to walk . I am thinking this is from the Herceptin? I see my MO on Friday (7/27). Any suggestions on how to alleviate this pain/swelling?
Thanks
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Positive can you elevate as well as ice? The last time I had a long flight I had some foot swelling and I raised my feet over my head and massaged them. It helped immediately.
For those doing rads + H the same day,I'm wondering if it matters what order you do them in? If you need much of a break in between? It should be only twice that I have both scheduled on the same day but are there any considerations I haven't thought of?
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Hi Ingerp,
I have tried the elevation with the icing. Nothing is really helping. I start my first radiation treatment tomorrow and will also receive my 2nd Herceptin drip. I have not been advised of any issues with this but will let you know!
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Good luck tomorrow, Positive,and please do check in!
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ingerp I had radiation 8:30 a.m. Friday morning and at 10 I was being hooked up for my infusions of herceptin and perjeta. I didn't have a rest between the herceptin and perjeta. So far no side effects other than fatigue. Upon completion of the infusions I went to work.
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