Herceptin - Quick Side Effects Poll
Comments
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I agree w/Special. My Herceptin only infusions are at 90 minutes per my insistence. Also i get an extra liter of fluid while I'm there. It has really cut down on the joint pain & headaches.
My WBC are slowly coming up each week. However my RBC counts have tanked - 4 months after last chemo. MO said not to worry. Also they could be influenced by radiation (2 months past that) so I'm waiting with baited breath to see if counts improve with blood work every 3 weeks before Herceptin..
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I'm currently on a taxol/herceptin/pertuzamab protocol (12 weekly taxols and herceptin & pertuzamab every 3 weeks). I've developed a dry cough that aggravates mostly when I'm talking, but otherwise I feel fine. Has anyone had this? My infusion nurse said herceptin can cause a cough. I need to call my Onc but I'm wondering if there is an issue with lung tissue or or heart issue. Just curious if anyone else had this type of cough while on herceptin.
Thanks!
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I had a light cough that came and went on Herceptin. I think maybe it had a bit to do with a level of post nasal drip- the same that caused that runny nose. I know you can worry about everything, but it sounds like it's fairly normal.
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I also had a dry cough when I first started herceptin/taxol. It went away after a while
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Thanks, ladies! Appreciate the feedback...
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Hello - I'm new to this board. It's been 24 hrs since I had my first dose of Herceptin...had minor muscle ache. Took Tylenol and slept. Feeling pretty good today.
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niceyd, Welcome to the BCO community. We are glad that you joined us. We hope you continue to feel well on Herceptin. You have joined a wonderful community of supportive and knowledgeable members. Please keep us posted on how you are doing. The Mods
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niecyd - welcome. Sounds like the same side effects I have - minor muscle ache & occasional minor headaches. I do have some problems w/my nails - brittle & weak and it's past the Taxotere effect. And as expected, my hair is growing back slower w/Herceptin. Hope your SEs continue to be small.
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I had my first herceptin only infusion 6/27 [every three weeks for the next year]. I haven't experienced any muscle/joint pain yet. I was anemic and short of breath during TCH but now I feel like I'm short of breath all the time. I have an echocardiogram scheduled next week.
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diablo how long was ur first infusion? Best if luck with ur echo!!
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If you have problems, give some consideration to extending the Herceptin infusion. The centers usually want to do 30 minutes. I believe 60 should be the minimum and I take mine at 90 minutes. This means I have minimum SEs.
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just had round 1 of herceptin (90 minutes) followed by Benadryl and another antihistamine which made me feel tired and thirsty
This was then followed by a taxotere infusion that took an hour
My nurse told be that my next round of herceptin in3 weeks will last am hour followed by a half hour infusion 3 weeks after that
The amount of time for taxotere will remain an hour
The remaining infusions of herceptin only will be half an hour. With chemo I have bloodwork taken the day before. This will end once I am on herceptin only unless requested by my onc
Tomorrow I will get my neulasta shot
I was also told that I will have a MUGA test every 3 months while on herceptin
I will keep you posted of any SEs
Good luck to all!!!!
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football - if you are prone to headaches and muscle/joint pain I would ask to have the Herceptin infused more slowly, particularly if given with Taxotere, which already has the bone pain SE. The one time I had Herceptin only faster than 90 minutes I had a great deal of bone/muscle pain, which I had not experienced on TCH, so I know it was the Herceptin. While it is acceptable according to the manufacturer to infuse over 30 minutes minimally, it can cause these issues, and there is a school of thought that the faster infusions may contribute to more cardiac problems. If your ejection fraction drops too much they will discontinue the Herceptin, so that is not something you want.
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I don't know if this is from herceptin. But in the last few weeks I started getting hot flashes, then a lot of itching and what feels like pinpricks all over my body. Very strange, I've never had that before, not even on taxol, so wondering if anyone else had that while on herceptin (I've had three infusions of herceptin only)
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The first herceptin infusion was over 60 minutes. The same as it was when I was getting it with the taxotere and carboplatin.
Thanks!
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Football - I agree with Special. I always insist that my Herceptin infusions are given over 90 minutes. It's your choice. For me this makes the SEs minimal or non-existant.
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Does anyone know of any studies in the literature or web sites that talk about Herceptin infusion times and how that might impact side effects? I recently had Herceptin #5, the first one w/o chemo, and have been feeling the joint pain (esp going up & down stairs on the knees). It's early so I'm not sure if that's because of the Herceptin, or my low blood counts.
I asked my MO about going from 30 minute infusions to 60 or 90 minutes. She said that the first infusion is always slow (up to 90 minutes) because of possible allergic reactions, but for later infusions she didn't think it would make much difference re side effects because herceptin has a long half-life in the body. And so now I'm confused...
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Coastal - the time has made a huge difference to me. I'm on Herceptin only now. They did one at 30min & I had lots of joint pain. Now I insist on 90 and I also insist on an extra liter of fluid. I can tell in my joints for a day or two that I've had the infusion, but no need for pain meds or too much coddling.
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im just not sure lol. numbness in hands and feet, shortness of breath, weight gain and who knows what else.
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Ellie - I'm confused by your surgery dates. Did you have the double mastectomy in 2012 or 2013? Are you still taking the Herceptin? I'd be surprised if all those SEs are caused by Herception only. The shortness of breath could be Herceptin &/or Adriamycin. I think the numbness is usually from the Taxol. Are you taking pills for the ER+? I understand those usually cause weight gain, as well as steroids.
I'd forgotten that I do get a sore throat for a couple of days after Herceptin only, and a slightly drippy nose. Think I'll try one of the Claritins that I have left over from the Neulasta shots. Depending on my activity level I can have some shortness of breath. But mostly knee joint aches.
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anybody have nosebleeds with herceptin only? I've gained weight
So they upped my herceptin by 25% and I'm feeling a bit chesty??? with only 1 boob no less! 0 -
jocanuck - yes I have nose bleeds the first couple of days after Herceptin. Also I have blood patches under the skin on my arms. All I have to do is barely tap something and I've got another one. Something like 12 per arm right now - some up to an inch in diameter. The MO had said it was age related but the dermatologist said today that it was mostly the treatments.
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Me too. I randomnly develop spots that look like wierd bruises on my hands and arms. Is that a blood patch? Reminds me of the old man hands my departed Father in law developed on his hands in his 80s.
Also runny nose, sometimes I feel like I have cerebral spinal fluid run out of my nose. Clear, copious, without warning. Sneezing. Body shaking, bone rattling, sneezing. And flu like aches, pains, nausea, general gi upset, crushing fatigue, every three weeks lasting 3 days.
Alteration in taste. I was looking forward to the first new potatoes. Creamy, lovely, stomach soothing potatoes. All I could taste was acrid. Like solanine from green potatoes. I asked my DH to tell me what he tasted. He tasted lovely potatoes. I know that taste is subjective, but I am convinced that something in my treatment, which for the past year has been trastuzumab (herceptin) only, has caused this.
But, at the moment, it beats the alternative.
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What a relief ladies! Thank you! Thought I was dying....can you tell I'm a chicken
I would not make a good poster girl for this damn disease....
I had 2 gushers 3 hrs apart...nothing like ripping the comfy carpet from under you...I was paralyzed with fear...I thought I should take a quick shower in case I bleed out (drama queen over here) if we had to go to emerg. The shower triggered another and it looked like that shower scene from the movie "psycho" blood was dripping down the walls, Yelled for hubby (he almost fainted) and he helped me finish washing and plugging my nose dripping blood...a real kodak moment...:( I'm short, fat, Kleenex stuck up my nose, crying, and he's trying to comfort me...I've had finer looking moments but what a guy!
Minus two I've started bruising as well, I'm sure it's herceptin now.
Kay, I have just about all the damn side affects and yes that clear fluid! That's what I thought was running down my face and all over my nighty...I looked like a horror show...it lasted 20 minutes and 1/2 box of Kleenex. NO problems with food...I've gained 30lbs since last year???that's why the increase in herceptin...
I called my Onc nurse and she told me it had NOTHING to do with liver mets or herceptin! I knew she wasn't playing with a full deck the moment I met her 1.5 years ago..she hates her job and she wants to retire...so..I never call for info and this is proof that she's a dingbat. I hope she retires before I really need her. I've already had some words with Onc but he won't hear of it..we're really stuck in Ontario as there are big cutbacks...the more I know the less I sleep!
Thank goodness for you guys! Thanks, Jo
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Just discovered a new SE - pseudomonas under my nails. I thought it was just dirt way down that I couldn't get out, but it's an infection that is targeting the "weak" nail beds and causing the nails to lift. I'm 10 months past Taxotere so although I had read Herceptin could cause nail problems, I never thought about it. I have antibiotic drops that I rub into finger tips & try to push under each nail twice a day. Derm doc says it may take a month. My nails had started to grow better w/biotin but are still very soft & spatulate with ridges. Doc says to keep them really, really short to lessen the chance that the end will catch & pull back more.
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On Herceptin alone for 6 months, every 21 days
CONSTANTLY watery nose and eyes (aka "the Herceptin drip"). (I can't take benedryl for it because I'm on Tamoxifen and there is some evidence that because both drugs coincidentally require the same specific enzyme to work, benedryl might lessen Tamoxifen effects. In any case, I didn't get much, if any relief from the drip on benedryl)
Fatigue for 2 full days after the infusion, and some chills, general fatigue thereafter
I have had unusual rashes - not correlated with the infusion itself but I am just reactive to products - even hypoallergenic ones I've used for years. These are really severe rashes with blistering that take at least 3 weeks to clear up
Sore/stiff hip (I never imagined it was related until I saw so many others with the same problem!) and tingling/numbness in one leg
My pulse rate is high (always over 100) and despite diligent efforts, my fitness level does not improve much
Weight gain (this can be the Tamoxifen too)
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I've been on herceptin only for 2 doses and I have the runny nose, joint pain, headaches and fatigue. Some might still be from chemo but I felt really crappy the day of infusion and a couple days after. Mentioned symptoms to my oncology nurse and was told they never had anyone with those symptoms from herceptin. I wish they'd read this thread. Also, nails are peeling and one is lifting off a little and I have a metallic yucky taste in my mouth. Does anyone else smell the chemicals after infusion? It's like it's coming out of my pores and in my pee for a couple of days after. Gross! I had the same thing when I was on weekly herceptin and taxol and thought it was the chemo...no it's the herceptin. I get the big dose every 3 weeks.
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I was diagnosed in 3/2005 was on carbo, taxotere & Herceptin weekly for 6 months. When I was finished with the 3 drugs I stayed on Herceptin only (every 3 weeks) until 11/2014 when the cancer returned. I have never had a side effect in the almost 10 years on it. Have regular echo's and they are normal. Now I'm on TDM1 (Herceptin & Emtansine) super Herceptin and another clinical trial drug palbociclib. So still on Herceptin almost 10 years later ---- no side effects.
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for those with lots of side effects, how did you manage them? It must've been hard to work and deal with pain, runny nose, diarrhea, etc...
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I've had two Herceptin-only infusions so far, and I'm in the middle of rads. Two of my nails are lifting and one looks like it has a blood blister under it. I assumed it was from Taxotere, but maybe the Herceptin isn't helping. Sometimes my throat is sore, but that could be post-nasal drip, dehydration, ??? I don't know what's normal for me anymore in terms of energy. I'm still recuperating from everything, I think!
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