Herceptin - Quick Side Effects Poll
Comments
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I took tylenol for my pain. My lower back and hips were affected the most for me. My Onc said bone and muscle pain were from the H.
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I finished TC a year ago and did not start Herceptin until about 8 months after finishing chemo b/c I was in a clinical trial doing Tykerb. I did not have joint pain from Tykerb comparable to that of Herceptin I am doing now. So, yes, aches are from Herceptin: Knee aches, back ache, head ache. Now, jaw/tooth ache.
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Hi everyone
My first post and 
to everyone going through this. Im currently on 9 of 12 weekly Taxol/Herceptin treatments (#10 put off a week because of Pleurisy), followed by Radiation and continued Herceptin for a year with Hormone Therapy. Side effects have been mainly congestion with bloody discharge, stomach issues controlled with Nexium and Gas-Ex, and Zofran when needed, dehydration, dry skin and my hands have developed dark patches. ER Doctor said irritation of the lining of the lungs from treatment as well but its not horrible - controlled with Advil. It seems as time went on, I'm feeling a little worse then in the beginning. Nurse said treatment is cumulative so that's probably why. Use ice pops when you can for hydration if fluids turn your tummy. Good luck to us all 0 -
side effects? I mention that since beginning hercepin infusions, I have an erradic heart beat, almost all the time. I saw an cardiologist today. He heard my jumping heart. He thought at first it could be something like pcp. I said it's only been going on since the herceptin treatments. He said, he didn't think that herceptin had anything to do with it as it appeared to him as a weaken heart muscle causing my heart to beat so erradically. I said cardio problems are side effects of herceptin. He left to check it out in his big black medical book. When he came back in, he said that today was an educational day. He said anything in the black box (brought in his big black medical book) was important and herceptin heart cardio problems was in the black box. I felt somewhat vindicaed.
So...on he 21st I'll have a 24 hour heart monitor belt on me and another echo heart to see if there are changes. If my heart is changing, sadly, I'll have to stop the herceptin. I wonder if you have the treatment longer if the side effects disappear?
One more possible side effect...without changing my eating habits, except for possibly eating less, I've gained 5 pounds. Hmm...is this from herceptin. I don't mind gaining it, but I don't want to gain more as I'm just about right at 141 (5'8").
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evebarry: How many Herceptin's have you had?
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achpurple... Two herceptin infusions.
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I have come away from treatment carrying about an extra 6-7 lbs. My weight wants to climb now for sure and I can't help but wonder if it isn't the whole insta-menopause thing!
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Hi wondering if weight gain is a side effect of herceptin as well? Or is the weight gain attributed to the steroids and chemo? And then there is tamoxifen?
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I think weight gain is a side effect of Herceptin. I am plumper since I am on Herceptin. After chemo I did a different drug for 8-9 months and that did not make me gain any weight. But since I am on Herceptin I am putting on more lb. And I am eating the same foods (macrobiotics) and working out. Still, no matter what I do the pounds keep "sticking". Hopefully, when I am done it will all come off.
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I know for me, I lost weight on the "hard" chemo...steroids or not, lol.
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I had chemo for 4 months along with Herceptin. Now I will take the Herceptin for 8 more months. My doctor said there would be no side effects from the chemo that he could not control. I was sick 24 hours a day for four months and nothing helped. The doctor said there would be no side effects from the Herceptin at all. The Herceptin alone does not make me feel bad, just tired and stiff sometimes. After the second treatement of Herceptin alone, my gums became very red and bleed every time I brush my teeth. Also, now I have what looks like ulcers on the inside on my eyelids. My nose runs constantly. If anyone knows anything that will help with any of these side effects, please let me know.
Thanks
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arkansas - Welcome! Sorry you are having se's from the herceptin. One thing that helped me was to have them slow down the infusion time to 2 hours. My onc suggested it. Helped a lot. Before that they were giving it to me in 30minutes. I had it every 3 weeks. My gums were also more sensitive, now several months past finishing herceptin they are pretty much back to normal. butler gum has a post-surgical toothbrush that might be helpful. I used it when I got mouthsores after the first chemo.0
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Omaz
Thank you for the suggestions. Do you know why slowing down the infusions help? I also have the infusions in 30 minutes every three weeks. Also, I will try the butler gum brush if I can find one. Thanks again and I hope you are doing great now. I see it has been 2 years since your diagnosis.
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Arkansas - Almost 2 years - yes, thanks! Here is a link to the toothbrush. I am not sure why slowing the infusion helps. Could be that it has more time to disperse in the circulation.
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The first herceptin infusion went for over 6 hours and I still had side effects as to why it took most of the day. They turned the infusion off for at least 30 minutes every time I showed the slightest side effect. Mine was slowed way down and still side effects. It depends. Side effects can be due to cumulative herceptin (herceptin stays in your body for sometime). Someone said to drink a lot of water after the infusion and exercising can circulate it faster through your body.
I haven't had the runny nose problem although at times my nostrils are wet or feel like it might drip. I take Lyzine and it's gone. Build up your immunity.
I do think herceptin is a weigh gainer because it slows down cell turnover.
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Evebarry: My heart function was less than stellar before I even started chemo. In fact, I barely qualified for the clinical trial I'm on because of it.
I started taking Hawthorn (herb) with my onc's blessing, and it has raised my ejection fraction (measure of heart function) a full 10%. That's an INCREASE in heart function DURING taxotere and herceptin and super-herceptin chemo. Amazing stuff.
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I had my last Herceptin infusion 9 months ago and still experience a runny nose and neuropathy of the feet. I had gained weight but through diligent exercise and dieting I lost 35 pounds. I walk every day and that keeps the weight off. Lately I am experiencing a terrible sense of sadness and listlessness. I do have an upcoming bilateral mammogram and have calcifications that are being watched. I don't know if this is an underlying sense of dread or all of the chemicals are finally catching up with me. I had two other chemo drugs (6 rounds) along with 1 year of Herceptin, surgeries and 37 radiation treatments. I thought I had put cancer behind me. I definitely have chemo brain, but I don't know which drugs did that to me! At one point I did have a marginal MUGA scan and had to go off the Herceptin for a bit. I was able to get back on and continue until the 17 infusions were completed (every 3 weeks). All in all I guess Herceptin didn't take an unbearable toll on me as far as I can tell to date.
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Hi, Patriotgirl: I am reading two books both titled "After Breast Cancer" that address a lot of what you're describing. It's apparently AFTER we finish treatment that we're most likely to get depressed. Please know that we're here for you. PM me if you'd like - I've been there in the dark sadness through Taxotere, which stripped away all of my joy. I am back out of the fog now, but I sure remember well what it is like. *hugs*
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I agree....I think I'm in a rather strange place now that I am all done. It's definitely a new mental game!
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Patriotgirl, appreciate your post. I may have to take herceptin breaks. Did any of you have problems with heart papitations? My heart flutters most of the time. This did not happen before herceptin. I would like to finish the treatment, but not at the risk of messing up my heart. My next herceptin treatment is the 19th of this month (I think?). My T.E. exchange for an implant surgery is the 27th of this month. I am so afraid of the infusion on the 19th. I want to cancel it due to the surgery. I may have to cancel the surgery if I still have heart papitations. What would you do in my situation?
Windgless, what is stellar?
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Hi evebarry
I have just had Herceptin 16. I had a lumpectomy and have now decided to have breast reduction surgery on the other breast. My onco will not schedule any operation until I have finished Herceptin on April 13th.
I did have low mugas (lowest was 47) and heart palps. I think it was anxiety but cant be sure so I was prescribed Ramipril 2.5mg.Will stay on this until done. No SE's from that medication.
What might interest you is that a few months ago I went for a Herceptin tx and was told my last muga had dropped to 36!!! Very scary. They put me in awheelchair and took me straight for an echo. Much better, less invasive test and lo and behold the score was 65.
Dont know if my story helps you but the anxiety and reliability of one scan method is something to consider.
Best of luck
Liz
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My cardiologist is of the opinion that MUGAs are not that reliable - plus the fact that they are more invasive and subject you to more radiation. All through my Herceptin, I had monthly ECHOs and would nap through them lol. The ECHO gives a good picture of the heart, it's bloodflow, function and ejection fraction.
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Windlass (love your screen name!),
Thanks for your response. I am glad to know that this is a normal reaction. I love to read whatever helps. Hugs back!0 -
I also had only ECHOs. My onc does MUGA only if there is some problem.
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Evebarry,
Most definitely be sure that you listen to your intuition. Hopefully you trust your doctor and are comfortable with his or her advice. I will pray for you.0 -
It truly is a new mental game!
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I had my second Herceptin only treatment yesterday. The first one was 4 weeks PFC and left me exhausted for two days.
This time, I got very dizzy when the infusion started -- I don't take the Benadryl because I hate the way it makes me feel. I didn't tell the nurse I was dizzy because I didn't want any flack about driving. I was tired the rest of the day and incredibly fatigued yesterday -- if I stopped moving, I fell asleep.
I feel fine today though. Have lost my appetite but I'm not complaining about that.
I started !@#$%^& Tamoxifin Monday so possibly some side effects are related to that. For some reason, I REALLY don't want to take that drug.
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I hope I don't jinx myself by saying this, but I am not having any side effects with Herceptin. I've been on it since October 2011 and off of chemo since December 30, 2011. Finished radiation on Friday.
Fingers crossed!!
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Herceptin and drugs seem easy for everyone but me
I feel as if I'm at a fork in the road trying to decide between possible heart failure and cancer recurrence. If the her2+ wasn't an issue it would be an easy decision. Good to hear from you Graylady, I happy you're continuing with the herceptin as it is a great medicine.
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evebarry: Let me tell you that this drug is not "easy" for most of us - that's why we have this thread and the "Herceptin Heart Attack" thread. It is very scary for me anytime I walk in to get it - have one more to go but I've been freaked out about the 16 other ones that I have already done. It takes sometimes as long as 8 hours for mine to be infused because of the se's of the infusion. Have heart issues sometimes in between that I see my cardiologist for and scared to death it will cause heart troubles down the road - but I trudge on. We all trudge on. Just like most of us are scared of Tamoxifen - sometimes taking that little white pill is the hardest part. Just take one day at a time and try to make decisions based on what you and your doctors believe is the best for you. I was initially started on TCH because it was the "best" treatment option for me, but after a major allergic reaction during my second treatment I had to be changed to AC with Herceptin to follow. Talk about hard to go to that next chemo treatment!
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