Herceptin - Quick Side Effects Poll
Comments
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Thanks for the comments everyone. It is on my port side, but the port is in my arm, not my chest. I just get Herceptin, no Benadryl. I also had nausea from it despite their assurances I wouldn't. My neck and arm have eased up some but it will still hit at odd times. This morning after I was up I suddenly felt that I couldnt move my neck, but Iburpofen helped, and it hasn't been too bad again. Weird. If it continues I will call the doctor on Monday. I have the neuropathy from Taxol, hopefully it will improve, it is worse the more I walk and use my hands, but generally manageable.
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those are not permanent side effects.
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Zelda, I guess it would be too good to be true for OTC Benadryl to work like that. What a crappy 40th b-day present! I had just turned 48 at dx, soon to be 49 now. I had bad hot flashes and night sweats and chemo pause when I first started chemo, but it's very mild now. I actually kind of like them now.
Grimbol, glad your neuropathy is manageable, mine is not too bad either. The other SE herceptin gave me is really soft finger nails that keep tearing on me. They got wrinkley on chemo, but they only got soft and easy to tear on herceptin.0 -
Zelda, most of your symptoms are probably from chemo. That was my experience. I also had a lot of swelling from the taxanes. Also I am not back to baseline, because I can see my sock lines when I take my socks off. Never could before. I started nortrityline for neuropathy, and my nails are horrific. I'm probably going to loose most of them. I posted a picture in the thread "I want to pull my nails off!!!." http://community.breastcancer.org/forum/69/topic/778182?page=1#idx_24 If I do too much walking, I end up unable to walk the rest of the day. It feels like I'm walking on rocks! I was told that it could be permanent.
Kay, we should meet for lunch after the holidays.
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If you have had any previous arthritis I believe this happens. I suffered from a horribly locked neck, very tense shoulders, and weak arms. It will go away in a couple of years. I now take savella because I became full of knots and horrible headaches related to tension.
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southhamptonmom, would love to meet after the holidays! I have met two other times with women I've met on the website and thoroughly enjoyed it.
Today was the worst day yet for the joint pain, yet I haven't had herceptin for 5 and a half weeks. I couldn't open and close my fingers when I first woke up. I think it must be the tamoxifen now. And probably that last night was very cold. The good thing is it gets better pretty quickly, I can barely notice it now.
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My side effects are awful. My body has an inflamed rash that burns and itches. Now my tongue is numb and thick. I have an ear ache off and on. Tried benedryl, Zyrtec, topicals such as silvadene, triamcinolone, and aveno products. You know, I could handle a burning and itchy rash, but tongue swelling makes me nervous. Have any of you had similar stories that continued herceptin? Was breathing ever impacted? I have also had the feet hands symptoms and some knee pain, but can easily live with that.
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Jennyboog started a thread on some symptoms she was having. Swollen tongue was one of them. She isn't on herceptin. I think it was from a hormonal drug. Why don't you pm her and see what she can tell you about it.
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Hi to everyone above!
ALK.....For the rash? Which I have had since i've started herceptin all by itself? I use Lyrica! It's taken 4 times a day (depending on strenght dr orders for you) and it is a nerve blocker. I also discovered after trying everything under the sun and moon, that believe it or not, OTC Dermaplast works almost instantly! It holds you for a while too! You may have to apply 2 or 3 times a day but it works best out of everything I've tried.
Grimbol...you can try these 2 things for your rash too. Personally? I think the rash flares when the hot flashes begin which is mostly at night. I have them during the day too and they do make my arms reveal some discomfort to me during the day but nothing like what flares up at night. It's weird because it s the same times each day but what I use above has helped allow me some normal function each day. Better then without I can assure you that.
Southhamptonmom....thanks for your info and the link. I will check it out! I have herceptin chemo today and will be out for a good part of the day but i will get on it as soon as possible.
To all.....I have read thru the recent posting you all put out there over the last few days in which I have not been availalble to sign on....I have alllllll the same things you do! I will begin taking my Tamoxifen today so it will be interesting to see what happens with my tongue. Thank god I went to the dentist yesterday and am going for an overhaul in my mouth Wednesday at 8am to finish up things I need with them! Can't imagine having someone poking around in my mouth if my tongue were to be swollen...OMG! I had sores in my mouth throughout all of the chemo and had such trouble brusing in a normal fashion. Plus my chemo was dense dose so every other week. The sores in my mouth barely had time to subside before starting again with each treatment. I also just in the last 2 weeks experienced major swelling. I agree, Southhamptonmom! I had a pair of leggings on for about all of an hour and a half before my implant surgery last Monday and i had lines that ran down my legs on each side, starting at the hip straight through to my ankles. It was unreal! I have knee pain and leg pain. I used to get the leg weakness with the nulasta shots but now only on herceptin....this is different from what I experienced from nulasta. All I know that the entire things sucks the big one and makes me feel like I am about 85 years old anytime I sit for any lenght of time and attempt to get up! lol. I am a very active and productive person so none of this BS works for me. Thank god I have the worlds best sense of humor! Love and prayers to you all. Will be thinking of you guys when im in chemo today! Have a great day guys. - Liz
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Zelda,
Thanks for the medication advice. I will bring it up at my next appointment. I posted pictures on a blog that I started so others can see what herceptin rash looks like.
http://kroesen-cancer.blogspot.com/
It is under "What a Bumpy Ride". Feel free to comment on the blog.
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ALK....I went onto your blog. I actually posted a comment but it looks as if it did not hold there. I cannot believe your arms! What are you doing for it currently? Is it painful? It looks like is and I am so sorry it's so bad. Mine does not show up on my skin quite that way but its there and it hurts from my wrists to my shoulders on both arms. I hope you find someone who can help you. It seems to me that ONC's do not really know what it is, believe that its real, and don't really know how to treat it. At least this has been my experience. Please let me know how you are. If I do not hear from you soon have a wonderful holiday!
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hello ladies
Hope you are all well and looking forward to Christmas. Am going to a wedding next Tuesday and was going to stay overnight at the hotel but can't as I have to be back next morning, first thing, for a blood test in preparation for Herceptin dose #18 on Thursday. Timing a bit off ! ! !
Had an ECG last Tuesday (20th) and have a CT Scan scheduled for 10 January. I may get the results of the ECG next Thursday but given that it's a holiday period ? ? ? However I feel confident all is OK.
I had been suffering from a swelling on my left index finger - it feels like liquid under the skin. GP says it's a touch of gout. Well just in the last couple of days I have developed a large swelling behind my left elbow which also seems ful of liquid. Any of you got those symptoms ?
If I am not on line again before Christmas day I wish you all :-
Nollaig Shona agus Beannachtaí
which translated from the Irish means "Happy Christmas and Blessings."
Frank
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Oh Frank, thank you for the Irish greeting! Do you speak Gaelic? Sorry but I don't have any experience with the swelling. I am back on the herceptin wagon though! Had treatment #10 yesterday. Merry Cheristmas to all! And Erin Go Braugh to you Frank! And hope everyone is doing okay with side effects.
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Am about a month + out now from my last Herceptin treatment and still get joint pain, particularily in my elbows. I heard Herceptin effects can last 3-6 months after the last treatment, although sounds like some ladies have lasted longer.
Happy New Year!
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I was unable to continue with chemo as I had a life threatening reaction so had four in total herception sessions. Unfortunately I had another life threatening reaction to herceptin as I was literally unable to get a breath. It was very scary and apparently the reaction is quite unusual. Went onto the hormone therapy and had another reaction to that with major bruising (and I don't normally bruise) which was leading to internal haemoraging. So after about 4 months of cancer treatment I am now on no medication at all. I've been told that if the cancer comes back it will be terminal as they can't offer any treatment at all. I am certainly crossing fingers that it doesn't return!
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After taking weekly Herceptin for 6 months (first 12 weeks with Taxol), I had a reaction during my infusion yesterday. I usually have the nurses give it over 45-60 min to help avoid side effects, but because it was quite crowded in the chemo suite, I decided to try their standard 30 min for this infusion. Half way through, I started getting cramps in my right foot, then in my left shin, then left foot and right shin, and then fingers on my left hand. The nurse stopped the Herceptin and opened up the saline drip. The cramping gradually subsided. She had talked to my oncologist, who wanted to give me Benadryl, but I had a problem with jumpy legs with IV Benadryl during Taxol months before, and was switched to Claritin. So the oncologist said to give me Tylenol. I don't think that helped at all.
The nurse asked if I wanted to try again with the rest of the Herceptin infusion, and I agreed, so she set the second half to run over an hour. The cramping repeated and was more painful the second time. We had to stop the infusion altogether, and they ran another 500cc saline to flush me out, and I had no cramping after that, nor since.
I don't think the trouble was with running Herceptin a little faster--it wasn't that much faster than usual. This was a bizarre reaction, and the nurses and onco said they don't think it was the Herceptin that caused it. So what was it then? I have had no changes in supplements or diet. Several hours earlier I had taken my last dose of IV antibiotics (Teflaro), but I was on that during last week's Herceptin with no reaction. I have had no other side effects or reactions with Herceptin except an occasional drippy nose. My feeling is that this week's Heparin was mixed incorrectly to a stronger dose, or the drug had gone bad (they do use a multi-dose vial), or maybe it was not Herceptin. Have any ideas? Next dose is on Monday, and I expect it will be fine.
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Ann - Could be one of those things - I always checked my bag and the dose but that doesn't mean they couldn't have mixed it wrong. They always wondered why my blood pressure was so high in my pre-infusion appt - Well those are powerful drugs and humans make mistakes and that always made me nervous! Glad the cramping went away after the infusion.0
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With me infusion timing makes all the difference - last time they tried to get it done quickly because I hadn't been reacting they ended up having to stop infusion 2 times and it took a total of 6 hours to get. Now they just know that it has to start at what I call the "Grandma drip" and leave it about 45 minutes, then a little faster, then one more time to finish in about 2 hours. At this point I have 4 more to go and don't want to take any chances on having it take longer in the long run because they're trying to save time by hurrying my infusion! I also have to be super hydrated when I do it, otherwise it doesn't work no matter what. As you can tell, we've done a lot of experimenting during my first 13 infusions! And, by the way, supposedly nobody has ever had any reaction even close to what mine are - just saying that everyone is different and reacts differently - the doctors should just have figured that out by now.
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Hey ladies Happy New Year, I just had Herceptin today , 2 more and I am done! I was wondering , has anyone experienced weight gain or inability to lose weight while on Herceptin. In one years time since DX I have gained a total of 15 lbs and I have been exercising like crazy and cutting calories, but I am gaining weight instead of losing, so frustrating..,,,
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I've gained 20, and started exercising as well. I have a feeling it's going to be a long road to loosing it all!
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And, I hate the washboard chest, and the BIG ROUND BELLY!
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I gained 30 over the past year, and I will be on Herceptin forever due to stage IV. Hoping WW helps...just joined online 13 days ago...lost 3 lbs., not much, but it's a start!
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I'm 72 years old diagnosed with infiltrating ductal carcinoma a Her2 + ERCPR - no lymph node involvement, lumpectomy with clear margarin all aound. Just finished 12 weekly Taxol treatments.
Was getting Herceptin every 3 weeks along with taxol. After the taxol stopped, I went to a weekly herceptin schedule (lower dose) because I was extremely cold and in 77 degree weather with 7 layers on, still couldn't get warm. I begin radiation (6 1/2 to 7 weeks of 5 days a week) middle of this week.
I think I am beginning to feel that the side effects from the taxol are beginning to slightly diminish.
I haven't heard of anyone experiencing the extreme cold that I believe was from my herceptin treatments. The experts do not believe it was from the herceptin. I still do. Last week I, after herceptin, I got a cough when I firsst get out of bed; also I noticed a little shortness of breath during activity.
What can I expect now in my treatment. Lori/billsjellybean
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billsjellybean I receive a 3 weekly dose of Herceptin over 30 minutes and have now received 18 doses. I have never experienced the extreme cold to which you are refering however I'm monitored for 90 minutes after the infusion - Blood pressure and temperature both taken regularly over the 90 minute observation period. My Onc nurse told me that she has had a few patients who experienced SEs like teeth started chattering the patient got so cold. Apparently it's a well known though quite uncommon SE of Herceptin. Also at my 3 weekly assesssment the day before the Herceptin infusion one of the questions which I am specifically asked is "Are you experiencing any shortage of breath?" So that also must be a known SE. I have had very few SEs from Herceptin and it truly is a wonderous treatment. Don't know anything about Taxol.
A few weeks of Florida weather would be lovely at this time of year LOL
Take care and I hope things go well for you.
Frank
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Omaz - I had my weekly dose of Herceptin yesterday and did not have trouble with cramping I described a week ago. It was infused in an hour and I noticed no reaction at all. It doesn't explain what happened last week, but I'm so glad it went smoothly.
I have gained weight during chemo/Herceptin too and my attempts to lose it are futile so far. Cutting sweets seems to work the best, but I occasionally return to them and weight goes on easier than off. I am starting to take walks again, but don't have much stamina yet, after repeated infections and surgeries. Otherwise I'm feeling generally better, and start rads next week.
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AnnAlive: Glad you had no problems with your infusion yesterday - I also had Herceptin (#14 for me) yesterday. I think that, for some people, a slower infusion time makes all the difference in the world.
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AnnAlive - So glad to hear that it went better!!0
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Hi Everyone, I just found this website and am so glad. Hearing everyone's side effects has been reassuring to me. I have 10 treaments of herceptin. My regimen is carbo/taxo/herceptin every21 days and then hercepting once a week. At first the herceptin was a breeze. But the last chemo in Dec. I started getting severe pain in my left shoulder blade. For a few days it was horrible. Then it would go away. Now after every infusion I get this pain, some days are worse than others. I use advil and a heating pad to minimize the pain. I spoke to my oncologist and she feigned ignorance of any pain associated with the infusions. Can't say I believe her. When I spoke to the nurse who gives me the infusions she agreed it could be the herceptin. It's so frustrating to get 2 different responses. I just wish I could get a straight answer is all. My side effects don't seem to be as bad as some of yours. For all of you I am sorry you are having such a bad experience. AnnAlive, I read your thread and am glad all went well this last time. For anyone having sleep problems, I called my PCP to get some ambien. I could not continue this therapy without it, I need my sleep. My oncologist gave me something that worked like a placebo.
I have 3 more chemo treatments and I finish up with the herceptin in Nov. '12. I'll be sure to check in often with everyone. Thanks all for sharing!! 0 -
I am close to the end of my Herceptinonly treatments, and I have put on 40 pounds since this all started. It's driving me NUTS. I put myself on a liquid diet for 3 weeks, and I gained 4 pounds. How does that happen? I am so glad for this forum becuase it makes me feel like I am not crazy. I talked to my onc, and he kept telling me he never heard of weight gain with Herceptin. He just told me that people tend to gain weight once they finish chemo because they feel better and start eating more.
I hope the round belly goes away!
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Teckler - Are you feeling ok otherwise? Having echo or muga scans for your heart?0
