Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...
Webinar: Corrective Breast Reconstruction: Getting the Results You Want Join us July 9, 2024 at 6pm ET. Register here.

Anyone on Herceptin-only have tips for chills, body aches?

Options
abbyrhodes3
abbyrhodes3 Member Posts: 30

I finished up my TCH sessions three weeks ago (yay!) and have moved on to a Herceptin-only phase that's expected to run through August. I really thought I'd have zero side effects from it; I've been more concerned about monitoring/watching for cardiac issues and didn't even look into other side effects.

Well.... first session yesterday, and last night I went from feeling fine to having severe chills. I was under a sheet, three blankets and a comforter and still had deeply cold hands and feet. Got up to pee, and was so 'cold' my teeth were chattering and my body was shaking. House was warm, so it wasn't about it being winter. The chills lasted about two hours- then I was sweltering, and started having body aches and pinging pain which required Tylenol. Today, I'm still having some body aches (not as bad, but all over) and I have no energy.

Anyone else have these symptoms from Herceptin? If so, how long are you finding they last per round? Tylenol helps but doesn't knock it out- does anything else seem to be of use? Would Benadryl on treatment day help?

I'll ask my care team all this- but they often don't have a lot of feedback on the more 'minor' side effects, and feedback from anyone in the same boat would be helpful.


Comments

  • rainnyc
    rainnyc Member Posts: 801
    edited February 2021
    Options

    I would definitely contact your care team. Those don't sound like typical side effects for Herceptin, and it's possible you might have something else, i.e. cold, flu.

    I'm sorry you're not feeling well. Please do reach out to your care team, and feel better soon!

  • specialk
    specialk Member Posts: 9,233
    edited February 2021
    Options

    Agree, could be that your symptoms are coming from something other than Herceptin. How fast were your infusions when they were combined with chemo? How fast was your infusion of Herceptin alone? I am asking because some who post on this site, including myself, had issues when the Herceptin only infusion were done faster than when they were given with chemo. I normally had Herceptin infused over 90 minutes, and I never had joint/bone pain even though I was getting Taxotere as well. My first Herceptin only was run over 30 mins - and this is within the administration guidlines - but I had unrelenting pain for the better part of a week. I could not sleep because I was so uncomfortable. I asked to have the infusion slowed to 90 minutes again, no further problems. I usually had pre-meds with each of the TCH but had none with Herceptin only - I have seen others that have had issues with their targeted therapy infusions and asked to have Benedryl and Tylenol reinstated at a minimum, and that has helped. I also continued to have GI upset on Herceptin only until I added a probiotic, and that was a big help.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2021
    Options

    Slowing the infusion may help a lot! My first one was the standard 90 minutes because it is a loading dose, and I got shaking chills. Next time they did the standard dose at the standard 30 minutes and I got headache and nausea. So I asked to go to 90 minutes instead of 30 and had no problems. We tried 60 minutes, but nope, it has to be 90 or I get headache and nausea.

    A key point: Your oncologist must order it to be given over 90 minutes. It’s no good just asking the chemo nurses, because they need a doctor’s order to change from the standard time. Plus, they may feel like getting you out of the chair sooner. So advocate for yourself, my dear!

  • abbyrhodes3
    abbyrhodes3 Member Posts: 30
    edited February 2021
    Options

    @rainnyc, thanks very much - I appreciate it. I kind of hope it is a cold! I guess I may know more after the next treatment.

    @specialk - I think the Herceptin was given over 30 minutes for me during TCH (same as now) but I'll definitely ask. I did wonder whether re-adding Benadryl might be a good idea, so thanks for that- seems to be worth a try. It's hard to know if the Herceptin gave me any symptoms before. I assumed 99% of my symptoms (gut issues, being easily tired, some aches, smell/taste, etc) were about T&C and not H - all I've ever heard is that it doesn't come with many/any side effects.

    @shetlandpony - thank you; i'll ask my oncology case manager (doc's point person) if we can bump up the infusion time. That and the Benadryl are both easy enough to try, and since I have months more of it to go it would be nice to avoid feeling cruddy each time.

    Happily, I'm starting to feel better tonight - will hope to feel back to normal tomorrow!

  • minustwo
    minustwo Member Posts: 13,147
    edited February 2021
    Options

    I agree with Special & Shetland. I NEVER allowed the infusion center to push Herceptin in 30 minutes. I compromised and did the rest of the year on 60 minute doses and that was OK for me. Shetland is right - I got a lot of flack from the infusion nurses. I didn't need Benaryl with a 60 minute schedule, & glad because that just knocks me out & I couldn't drive myself. I did take Clairitin before I went each time - which may or may not have helped.

  • abbyrhodes3
    abbyrhodes3 Member Posts: 30
    edited February 2021
    Options

    @minustwo - thanks for the info. I don't have a strong reaction to Benadryl. I've taken it on and off so many years that it doesn't make me sleepy, so I can try re-adding it.

    Could I ask- for you, does the Benadryl help prevent the same symptoms- aches, pains, chills? Or did it give you other side effects? Am wondering how common what I had this weekend really is - one article said 10% might have flu-like symptoms, another said more like 40% have chills and body aches from it.

    Mostly, I'll be happy if I can do the full course with no loss of cardiac function. So far so good there, thankfully. Next echo comes in March.


  • minustwo
    minustwo Member Posts: 13,147
    edited February 2021
    Options

    Sorry - I don't know about Benadryl and the side effects. I carried around a child's dose, but I never take it. Just knocks me out cold. Slow infusion times and Clairitin worked for pretty well for me.

    Good luck with the Echos. FYI - I was told that any minor heart damage from Herceptin resolves itself with time. While damage from Adriamycin can be permanent.

  • racheldog
    racheldog Member Posts: 209
    edited July 2021
    Options

    I start Herceptin only on Monday and I am worried about side effects. Live alone. I asked the oncologist to run the first infusion over 2 hours and she agreed. I imagine they only give Tylenol? May I ask when the chills started for most of you and were these in the chair or when you got home? Benadryl does make me sleepy. Also I will go buy Claritin today----any type of Claritin or dose you all took as preventative?


    Thanks for any input?

  • abbyrhodes3
    abbyrhodes3 Member Posts: 30
    edited July 2021
    Options

    Hi, @racheldog - I can tell you that for me, doing the infusion over a longer time period is the most helpful thing of all. I'm having them over an hour instead of half an hour. I still feel very creaky for a week or so after, but it's nothing like the deep body aches, joint pain, fever, chills that i get if they push it faster. Last infusion, someone failed to note that on my care plan - they pushed it faster, and I didn't realize until the bag was almost empty. I looked up expecting I had another 40 minutes to go and it was 2/3 empty. :\. The aches and pains started four hours later, and I had a fairly miserable night/morning ahead of me. The body aches and overall soreness were also stronger for the next week.

    Beyond making sure they push it slower, I give in to needing to take a Tylenol or two somewhat daily. I still have had to take some at night this week, and my infusion was 18 days ago. Benadryl I tried as well- didn't seem to make any difference when I dropped it, so I don't take it with the infusion anymore.

    I want and appreciate the benefits of this medicine - so I'm resolved to dealing with it. I'm hopeful that once I'm done my treatment regimen (seven more weeks to go!) the creakiness will fade.

    PS- the family and friends I discuss this with kind of are amused when I say I wake up feeling creaky and achey and I walk around drained and hurting and feeling like I'm 80 for a couple of hours. The docs tell me that's what women they induce menopause in for treatment tell them as well- that they suddenly feel old and achey. But... it's not normal for me. I was post-menopause by a couple of years when diagnosed, and didn't feel this way. So I'm hoping to get to feel like myself again eventually.

    Fingers crossed for you. Do you know for sure that you have a reaction to herceptin only? I've heard only about 30% or fewer of people do - most don't even feel like they're getting anything. Bbut for those of us in that group, the slower infusion rate does seem to help!


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited July 2021
    Options

    Abby, I do not see what is amusing about your waking up tired and in pain. You may tell your friends and family I said so!

    Racheldog, my shaking chills happened during my first infusion when I was still on the bed. I don't think the nurses would have released me to go home until they stopped. They want to keep watching you if you have any sort of reaction. I did throw up on the way home (fortunately I was not driving myself), but I also started two other drugs that day, so it's hard to say exactly what caused that. I have recently figured out that herceptin causes three to six days of diarrhea for me. My onc says that makes sense. I had been blaming it all on another drug that causes diarrhea, but I see the consistent pattern of it happening right after the herceptin infusion. Now that I know, I am working on finding the right timing and amount of immodium/loperamide. So you might want to have some on hand just in case. I tend to react to drugs, and a usual dose is often an overdose for me. You will see above that I needed to slow the herceptin infusion. I get it over 90 minutes. I wish I had known to ask for what you did, that the first dose, which is a loading dose (higher), be given more slowly than standard.

  • abbyrhodes3
    abbyrhodes3 Member Posts: 30
    edited July 2021
    Options

    @shetlandpony - thank you, I might just. :) Ha. I didn't mean to make them out as being really thoughtless - what I accidentally edited out of my comment is that the couple of people I discuss it with are either older with stenosis (mom) or my age with arthritis (sibling). So they're more bemused than amused as to why I'd be surprised to wake up hurting. But it is hard to get across to them that for me this isn't normal- and it's very odd to feel this way.

    I'm glad to be able to say that my latest infusion (Monday) went in over 60 minutes- and once again that cut my side effects substantially! No fever, chills, and only mild aches. Nothing that required Tylenol. I don't understand why it makes such a difference, but I'm glad it does. Two more to go, fingers crossed! And @racheldog, hope yours went well!

  • deniseml
    deniseml Member Posts: 68
    edited July 2021
    Options

    hi Abbey,

    I had 7HP infusions since surgery and can say I haven't had any major side effects. I do take 2 - 8 hour Tylenol tabs at bedtime because that's when body aches bothered me most. Never had any chills and don't really feel tired or ill from infusions. everyone reacts differently. Hope your experience is as good as mine

  • racheldog
    racheldog Member Posts: 209
    edited August 2021
    Options

    Hello all, I have my #2 infusion of Herceptin only this Thursday. Because of the new Delta variant I am worried about that as the cubicles are not close but you never know with this so contagious. I have my N95 mask and face shield ! My family driver had a covid exposure from inlaws on her side so she cannot take me. I hate asking anyone for rides and I did OK on Herceptin #1. They accomodated my request and ran the infusion over 2 hours for the first one, and this one will be 90 minutes. Did pretty much ok, maybe a little nausea on Day 2 after but ok overall. They do not give anything but Tylenol for a pre med.

    Are most of you driving yourself to Herceptin infusions?

  • specialk
    specialk Member Posts: 9,233
    edited August 2021
    Options

    racheldog - I drove to all of my Herceptin only infusions, but had not had any adverse reactions at any point even during chemo. I did drive myself to/from one chemo because my husband was chasing our dog around the cul de sac due to an escape right as we were getting ready to leave, lol! The dog was apprehended and he arrived about an hour into the process. DH drove to the other 5, mainly because he wanted to go with me, but I could have driven myself. I did have all of my Herceptin infusions done at 90 mins, except the first one after chemo ended which ws done in 30 mins, and that one caused some muscle/joint pain. I requested to go back to 90 mins, no more discomfort.

  • melbo
    melbo Member Posts: 266
    edited August 2021
    Options

    I drove myself to all of my kanjinti/Perjeta appointments, but I never had any drastic side effects from them besides a general icky feeling, usually a few days after

  • abbyrhodes3
    abbyrhodes3 Member Posts: 30
    edited August 2021
    Options

    I've been fine driving myself to/from Herceptin only. The times I've had muscle and joint pain, it started at least 5 hours after and my ride is about 90 minutes. Even if it had started sooner, it wasn't bad enough to make driving a challenge.

    It's quite amazing to me that the speed at which they deliver the Herceptin (generic/biosimilar in my case) can make such a difference. As long as I have it over an hour, I'm pretty much fine. Any faster and I have a rough night/next day of body pain/fever/joint aches and then a few days before I'm back to 'normal.' I hope this thread might help anyone who bumps into it later- my docs are fine with slowing it down, but it didn't seem to dawn on them to do so. Took this message board to find the answer i needed!

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited August 2021
    Options

    High-five, AbbyRhodes! I love it when we help each other solve things.

  • racheldog
    racheldog Member Posts: 209
    edited August 2021
    Options

    Thanks to all of you for driving yourself input. Tomorrow I have #2 Herceptin and will need to go alone since my driver was Covid exposed. It seems that unless something major happens during the infusion (which is usually the first and thank goodness it did not) most SE might be mild and either the next day or a few days after. These are bad times to be having infusions IMO. With hospitals and ERs so full of Covid and emergencies that is the last thing anyone needs post infusion.

    Again I asked for a 90 min--2 hour infusion. I also asked for a bolus of IV fluid before I leave the facility. Thanks to all. Hope this goes ok. These are the "things" that become worrisome when single and going thru treatment alone. I am absolutely no wimp but hate to bother people for rides, etc when they are working or have other things in their lives or family that lives far away that would make it a burden for them to drive to me.

  • racheldog
    racheldog Member Posts: 209
    edited September 2021
    Options

    Well, I am done with Herceptin #3 slow infusion. It seems for me that with these monoclonal antibodies like Herceptin that my SE start about 48-72 hours later. How about all of you? I feel like a wimp as compared to some patients who seem to breeze through Herceptin yet I read on other blogs and forums (not this one) that Herceptin is definitely not without problems. For the last 3-4 days I still feel dizzy at times, blurry vision (which did clear up on 2nd infusion), fleeting very mild chills here and there, mild rash on abdomen, and lots of fatigue with this last treatment. Anyone here can chime in if you have had the same reactions? I am 7 days out from infusion.

    I take my vital signs and temperature and everything is just fine. Trying to hydrate more. Gets me down as even though I am older I was doing just fine one year ago and was active.

  • abbyrhodes3
    abbyrhodes3 Member Posts: 30
    edited September 2021
    Options

    Hi, @racheldog - I just finshed my 17th and final Herceptin. I'm very grateful for its existence - but it wasn't easy on me, either. My symptoms started more like six to 12 hours after, not several days after. I had a general feeling of being off kilter, body aches, headache, chills. In fact, the first time I had just Traztuzamab (post THC chemo) I had chills so bad I needed several blankets that first night and was still shaking with cold. I also noticed I felt off for about the first week. My infusion was every third week.

    Having the drug infused more slowly was the only thing that made a difference for me. Tyleonl and taking it easy was all I could do from there.

    I also have friends who sailed through it w/o any major symptoms- one said she really wouldn't even know she was taking anything. It is quite amazing how different we all are when it comes to these wonderful but difficult meds. I hope it will get easier on you. It did for me as long as I took it slow. By the last few, I felt creaky and definitely knew I'd had the infusion but it had far less impact than when I first had it solo.

  • armom4
    armom4 Member Posts: 82
    edited September 2021
    Options

    I had body aches but no chills. My MO made me have Benadryl before infusions and I didn't have body aches after that.

  • racheldog
    racheldog Member Posts: 209
    edited September 2021
    Options

    Thank you both for chiming in. I think AbbyRhodes3 used the best term to describe how I feel---"off kilter" as if I have to occasionally walk slow and definitely make sure my two big dogs do not knock me over when they are excited to play or wake up in the morning. That plus some blurrier vision which comes and goes but feels better to make sure I walk with my glasses on! Don't usually wear glasses outside but this is all new on this journey.

    This is one tiring journey and everyone is correct that these meds affect people so differently. I was trying to look up the half life of Herceptin when it is given every three weeks as an infusion. Looks like maybe 9.35 days, but certainly can stay in the system for much longer. Be so glad when all this is over. Thank you for sharing because oncologists seem to play down the side effects and hearing what others go through or have experienced is reality.

  • abbyrhodes3
    abbyrhodes3 Member Posts: 30
    edited March 2022
    Options

    Hi, to anyone who might bump into this- how are we doing post-Herceptin? I am six months past, now, and it seems more like it's been a year! I will say again that I'm very thankful for this med- and hopeful for the difference it may make for my life- but also glad I'm done my course of it. Was not easy for me. My overall health is good these days. I'm past the aches due to the chemicals, and the fatigue from radiation. My next scan/check is August, which will be 1.5 years since my lumpectomy. My six month check was clean, thankfully. Hope all are doing well!

    PS they changed the whole site and I can't find a thing. Off to look for links on hair loss...which sadly is going to be an ongoing issue for me. Small price to pay for existence, is how I am looking at it.

  • racheldog
    racheldog Member Posts: 209
    edited April 2022
    Options

    abbyrhodes3: I , too, am exactly 6 months out from Herceptin and 8 months out from radiation. It has taken that long to finally begin to feel like myself again. It was not easy for me either. I still am not 100% but my sleep has been better and I am trying to eat better and exercise. Finally it has taken this long although being older the whole journey was not fun!

    My new obstacle is that it has taken me to now to decide to go on these toxic AI drugs. I had really been down about these and was extremely reluctant to start. But I started today. Letrozole. I will try these but if the side effects become too much I will stop. I will not chase the SE of these drugs with yet another drug and antother drug. Oncologist push these as it is their protocol. I plan to look at naturopathic or Chinese medicine as well in case I make the decision to stop AI's. Will see but I agreed to try them.

  • abbyrhodes3
    abbyrhodes3 Member Posts: 30
    edited September 2022
    Options

    Hi, Racheldog- hope that all went well with the Letrozole?? I didn't have that difficult choice to make, because in my case none of the AI drugs would be of significant benefit. I hope it has been something you can tolerate, though, with it being of help to you and that all is going well.

    I can say that my post-Herceptin misery seems to be over. It's been a full year since the end of my treatment course, and it took a good eight or nine months to feel over the hump post- Herceptin. Again, very thankful it exists - no looking gift horses int he mouth, here, but it was a rough one for me.

    Had my latest mammogram; 19 months post-surgery and all good! I'm looking on it as another year to enjoy and to hope for the best.