Herceptin - Quick Side Effects Poll
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theLadyGray
I have 4 more as well...can't wait to be done. I had such severe leg pain by my knee I went for an xray!. I am better now i am making myself walk a little more each day. I am tired. i am also on Tamoxifen but temporally off to see if that is what was causing my severe diarrhea. I couldn't leave the house for a week and if we went some where i wouldn't eat for fear of explosion! i am almost 1 year out and I am very very tired of all the BC bull@#%*!
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I had to stop Herceptin after 12 weeks during Taxol. My EF on ECHO dropped from 65 to 39. Had another repeat ECHO after 4 months and still 39. Also had Nuclear Stress Test as cardiologist wanted to check things more in depth. He believes I may have had a silent heart attack during Herceptin/Chemo. I am on meds. I talked him out of an immediate heart cath because I need a break.
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Denise -G Hope your EF is on it's way back up.. Mine has gone back up to 53 since stopping Herceptin and being on heart meds. seeing GP today so will find out if I have to stay on heartmeds for ever or just for now.. Been on them for four months now.. feel so much better
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Ossa, thanks for the encouragement and so glad to hear your EF is going back up! How low did it go and how long did it take to start going back up?
My heart took another hit because of Rads on left side, so I am thinking in a few more months it will start to improve with meds and exercise.
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Ossa, thanks for the encouragement and so glad to hear your EF is going back up! How low did it go and how long did it take to start going back up?
My heart took another hit because of Rads on left side, so I am thinking in a few more months it will start to improve with meds and exercise.
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Denise-G My ef rate stared going back up once I was on heart meds and no more Herceptin had Mugs scans every six weeks, six week after quitting Herceptin my ef went up ny 2 the following six weeks it went up by 1.. hope the trend continues, only thing that sucks is that I have to be on heartmeds for the rest of my life .. hope your trend takes an upward turn
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Quick question - do you all get benadryl before H only? The first time, I got 25 mg...yesterday, I asked them to half it so it was only 12.5. It just incapacitates me for the rest of the day! I can't sleep there (and not enough time) so my mom drives us home and I pick up the kids from school and then I just CRASH for several hours...
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No premeds for me at all with the Herceptin only... And I still come out really tired and need to go straight to bed when I get home.
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Karri - I was able to wean down to no benadryl at all with Herceptin. I wanted off of it for the fatigue factor but also b/c it is one of the medicines on the "do not take with Tamoxifen" list.
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I declined the Benadryl after the first Herceptin only treatments with no ill effects. Excluding the four treatments with TC, I've had 11 H only treatments -- 10 without Benadryl. Benadryl gives me cotton brain -- can't stand it.
Over the summer, I had four H only treatments at a different treatment center than where I started treatment. That treatment center didn't offer Tylenol or Benadryl, although I'm sure I could have asked.
It also did the H only infusions over 30 minutes versus 90 minutes at my regular center. I mentioned the difference and was told 90 minutes was the old protocol. I did experience the vision problems for the first time after the first 30 minute infusion, but I've had them after subsequent 90 minute infusions so I'm not sure there is a connection. Other than that, I noticed no difference in how I feel between the 30 and 90 minute times.
And how I feel is tired. Number 15 laid me flat for several days and I haven't sprung back -- still sleeping a ridiculous amount. I'm resigned to being at varying degrees of tired through the end of the year at which point I hope I start regaining my energy.0 -
kltb04 - I always got Benadryl before my Herceptin infusions. I generally get allergic reactions to certain drugs such as penicillin, so my onc thought best to give me Benadryl just in case I have a reaction. I know the feeling though---it knocked me out every time. I took my 'beauty' naps during those treatments. I am speaking in past tense, because I finished my last H treatment 10 days ago. Yay!
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Congrats survivorwoman! Yay!
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Thank you Moonflower! I am happy too. I had a loooong two years of treatments. First, the numerous surgeries, then 6 months of chemo, followed by a year of the clinical trial drug and at last 18 infusions of Herceptin. In terms of chemicals, I am DONE! I still have to finish my breast reconstruction, which will happen after I lose the 20lb+ weight I put on during Herceptin, though I ate healthy, did biking, yoga and other exercising. Nevertheless, I look chubby and pudgy, but I am glad to be alive!!!
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And that is, in and of itself, fantastic! LOL!
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Thank u! 0 -
Hi this is my first online message regarding my cancer. I do not know all the details of my cancer type. I don't know if its because I have not been told or because i not asked. I was diagnosed in may 2012. 2cm HER2+
I have had 3 FEC and 3 taxotere at 3 weekly intervals, herceptin with last 3. I had thought all my side effects was due to chemo. Did not realise it could have been herceptin too. Have had the runny nose, causing sores inside nostril that is becoming the hardest thing to deal with as it doesn't get better between cycles it's getting worse. I feel like taking sandpaper to the inside of my nostril to get some relief. Gutted now as I thought it would get better now chemo stopped. Have 9 more months of it!!
Also have hip pain, and overall body ache like I have bad flu for about a week. Again I had put this down to taxotere, I hope its not the herceptin as I find it hard being unable to do simple things.
I also have the worst mouth imaginable for about a week after. It feels like its coated in something nasty, nothing I eat or drink makes it better, often it's worse.
I am gaining loads of weight.0 -
Hi HeadInTheSand :you are not alone. As you might have read it above I had gained a lot of weight from Herceptin. Between the time I ended chemo and started Herceptin I was on an clinical trial drug for almost a year, so the side effects of the chemo had subsided significantly. Only that Herceptin gave me different side effects instead. Joint ache is very common, so is body ache and tiredness. Also, it take time for chemo's side effects to flush/wash out, but it happens. And one day you will enjoy the taste of food. I will always remember the first apple I ate that I was able to taste a month after finishing chemo. It was heavenly. You will get there, too. Isn't there something you can dab with a q-tip in your nostrils. Like sesame oil or a bit of aloe to help it heal?0
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Hi headinthesand, i used aquaphor on a q-tip in my nose as I had a hard time during chemo/herceptin. It did seem to ease up once I was only on H. The body aches I'm still waiting for them to subside! I finished H at the beginning of August.
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Hi All. Had my first loading dose of herceptin two weeks ago, and then a regular dose last week. Been battling a really bad headache - mostly on the left side of my head - ever since. Getting taxol too every other week, so not sure what is causing what. But most of what I've read points the finger at herceptin. Wanted to check in with you all. Feeling pretty discouraged about this, as herceptin treatment will last a full year. I don't think I can handle this headache for a year!!! Thanks for any feedback you have.
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Ramols: my headaches came and went while I was on Herceptin. At first, I got them more often then eventually, I got them less and less. Could it be that you are slightly dehydrated a bit? Chemo tends to dry us out.
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Thanks for your response Survivorwoman. I've thought of that - but I think I've been doing a pretty good job of getting water into my system. But I guess it never hurts to get more into you... Could also be stress as we sustained some damage during Sandy and life's logistics haven't gotten a little sticky. But it is at least encouraging to hear the frequency of your headaches lessened over time.
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ramols - I had bad headache after the first treatment that lasted for a few days but with the later treatments it wasn't hearly so bad. I hope that is true for you too. It's a lot all at once. You could ask your doctor for a stronger medicine for the pain, maybe that would help.
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Thanks omaz. It helps to hear people say that they ease up. I will for sure chat with my Dr tomorrow.
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I am posting for a very good friend....she has been on Herceptin since Jan after having been on it for 1 year and a half years ago. She has been having eye problems, like getting very dizzy when looking in a different direction...can this be a SE from Herceptin. She has been to an eye DR and everything is ok. She has a PET scan in 2 weeks. Any ideas? Thanks!
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ramols - are you taking any anti-nausea meds for chemo? Some of them can cause headaches too - particularly Zofran.
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Buburuu, I believe it is a side effect. But I am sure others on the board will be able to point out the studies where it is outlined.
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2 cents: After reading the anti nausea meds were also anti-psychotics, I held out on them. I ate organic parsley! A couple of bites and it subsided.
Kept up on my fluid intake, didn't matter, still dehydrated = NUUN!!!!!!!!!!!! to the rescue. A friend had another friend whom went thru chemo and NUUN helped so much.
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Hi. Sure is nice to know I am not alone with my side effects. I too am Her2+. I also had 3 FEC and 3 Taxotere. Major side effects from all of the drugs. I also had 25 radiation treatments and was burnt pretty bad. I have now had 10 of 18 herceptin, one treatment every three weeks. I am expreiencing a lot of bone and joint pain, along with major hot flashes. Still not able to return to work as the pain is so bad. I have been prescribed effixor and gabupentin (not sure of spelling) and nothing seems to make a difference. I am now trying cymbalta. Have been on it for a week and so far no difference.I have had another bone scan, bone density test, xrays of hands and wrists and am now being sent to a pain clinic and a rhumetologist.
So tired of being achey and sore all the time. I have numbness and tingling in my hands and feet that will not go away. I too suffer from runny nose and sores inside the nose that really hurt !! The Drs. keep saying it is all from the taxotere but I'm not so sure. My last chemo treatment was Aug 17, 2012. It is now 7 months later and I am still sore. I think the herceptin is also a factor even though they all say herceptin has minimal side effects. I too have had significant weight gain. Nothing I do seems to make a difference. I have gained about 25 Lbs. since this whole mess started.
Can't wait for all this to be over and get my life back to some sort of normalness.
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SharBare, If your herceptin us being infused within 30 minutes that can be the cause of your bone pain. Ask them to slow it down and see if that helps. I had my herceptin infused in 1 1/2 hours and never had the bone pain. I hope you get relief soon.
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I began herceptin along with two chemo drugs in September 2012. Finished chemo December 2012 - was having herceptin weekly during chemo and chemo every third week.
Since finishing chemo moved to having herceptin every three weeks. During my chemo and herceptin regimine I had a lot of bone pain, nausea, and other symptoms. After finishing chemo I believe I am having bad joint pain due to the herceptin, although my doctors seem to think the herceptin is not causing this. I also have the constant running nose and I am not sure about fatigue - sometimes I feel I have a lot of energy again (compared to during chemo) and then sometimes I am surprised at how tired I get still.
My hair started growing back in about 5 weeks after chemo finished but it has been VERY slow. And, strangely my lashes and eyebrows are thinning more the last few months on herceptin only then when I had chemo.
I feel that maybe the herceptin is making my hair growth slower. Mostly I am concerned about the knee, hip and bone aches. Especially when I sit for long periods during the day and when I go to bed at night I am very sore.
Thanks for starting this discussion page. It is helpful to see how other folks are affected.
Julie
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