Herceptin - Quick Side Effects Poll
Comments
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Frank - I know I've said it before but what a small world. I hope you guys have a great visit!!
I also just had my 12th Herceptin today. Body aches in general are getting a bit better so I think some of it was residual from my chemo although with H I do get kind of achy for the first few days - mostly my knees and hips. I get a bit of diarrhea but not too badly. Last tx I was just fine, and this one as soon as it was done, I was exhausted...had to come home and sleep for about an hour before I got up and about. There's also a point in the cycle where I get sharp headaches and I am convinced I have brain mets, then they are gone and I've completely forgotten about it until the next time, LOL!
All in all, it's really not that bad - guess I just like to complain!! I am going back to work next week after a year off with this crap!
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I just had my 2nd H only infusion. It was pretty much like the first. I needed a couple of major naps the folowing 2 days and my knees killed me. I had knee surgeries back in feb so they are my weakest link. The SEs seem to only last for a couple of days so it is very do-able. beats doing a hormonal for 5 years-of course i am neg for ER/PR. I realize some are going to have to do both.
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Marjie - I get a lot of headaches also. Actually, thanks for reminding me as I have treatment #14 today and want to take Advil before I go as a preventative. My nurses have also said delays with tx are fine and pretty common. Today is also my 3 mo f/u with the MO, so I will be there a while this afternoon.
My town had a lot of flooding, streets and parking lots turned into rivers, but we were lucky with no water in the house and we only lost power for a little over a day.
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Ouch...okay, sensitive teeth!! Another SE that I forget about until it comes back!
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Marjie - that's interesting, I didn't know about that one. I've been having sensitive teeth, which I attributed to my recent dentist visit after waaaaay too long, but maybe it's a combination.
For those who had ports, did anyone keep theirs in after H was finished or did everyone get them out right away? I will have last H end of Nov. (I think) and am wondering if I should schedule port surgery beginning of Dec. so it's not during the holiday time. I know if I keep it in, I would need to get it flushed every 3 weeks.
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readingmama - I think the doctors have different approaches about the port removal. Mine was ok with getting it out, some others are keeping theirs in for a while.0
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I have been told I can get mine out right away. My last H is end of January and I am planning to go south with my DH mid-February, so I wouldn't mind having it out.
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Headaches, hmm, on some of my other posts on threads (august chemo 2011) I have explained about my headaches. They are now going to do an MRI next week, just to 'check and see' - freaking me out!!!
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Grimbol - that would freak me out too, good luck and keep us posted!0
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Grimbol - Good luck and keep us posted!0
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Been on Herceptin only treatments for six months now (9 total and 9 more to go). Symptoms have been varied. After first two or three treatments, had chills the first night. Now I have aches and pains, fatigue, weight gain, headaches, skin conditions like acne or rashes. Nothing major, but slowly becoming more acute with each treatment. If I feel crappy one day, I'm usually much better the next. I tried to keep up with my normal exercise routine, but I am too exhausted for the rest of the day. My heart feels like it is working overtime all the time. When I try to tell my Onc what I am experiencing, he just shakes his head and says that my symptoms are not from the Herceptin. HUH? It's the only thing I'm taking!!!!! Had to start eating small meals as I started having some acid reflux. I will be glad when this whole thing is over and I can start feeling normal again.
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ReadingMama - I had my port out two weeks after my last Herceptin. I know that some oncs want their patients to keep them for a while (check out lago's posts about it), but she had BMX and lymph nodes taken from both sides, so she gets her blood draws with her port. My MO & BS both told me that should I get a recurrence it wasn't that big of a deal to put the port back.
I saw that someone was having headaches - I had a headache that lasted 3-4 days after each herceptin, I also had nose bleeds for a few days after each infusion.
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Hi All, I had my first Herceptin on Monday, and had none or very little side effects, Felt like if a flu was starting that first night, and a bit tired the day after, but nothing that would stop me in my usual activities. However, my skin kind of feel a bit hitchy, specially on my arms and back. Again, not a show stoper. No headaches or anything else yet. Hope that it will stay like this...
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I am actually feeling quite good....almost my old self. I go in for my 13th Herceptin next week so I am going to pay special attention to how I am feeling. The pattern seems to be that I am very tired for a day, have some aches...definitely head-achy for a week or so, increased heart rate, generally not feeling well. My teeth get very sensitive and my jaw is sore. 2/3 of the way done!!
The heavy joint pain that I was experiencing seems to be subsiding quite a bit so I think it was left over from the Taxotere.
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I am half way through my 12 months on herceptin, currently recieving the treatment every 3 weeks (also did AC x 4, taxol x 11). I have had very little by way of side effects on herceptin. In fact, I am currently training for a triathlon and am in the best shape of my life fitness wise. My two tiny complaints; sore/crusty nose, weak nails. I also haven't resumed menstruating and am experiences hot flushes but that's more likely to be due to the tamoxifen which I am also on
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I made the mistake of having my annual flu shot the same time as my Herceptin with the Onc's approval. Next day I felt like I was hit by a truck. My advice is don't have it the same time....OUCH!!
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Hi,
I am new to this string. I have had 6 TCH treatments and now about 2 herceptin only infusions. So I still have until next March to go. I can deal with the constantly tearing eyes and the breaking nails and occasional diarrhea, but the the results of the MUGA test I just got back, I AM worried about. My heart is starting to show changes from the baseline first MUGA which was done back in March before I started chemo. My sweet onc called me at 9:30 tonight to discuss it. She said it isn't that bad and heart changes are generally reversible but it is still scary. She may refer me to a cardiologist. I don't have any heart symptoms other than fatigue which I attributed to a lot of things going on for me. She says she will probably now start giving me this test every 3-6 weeks instead of every 3 months. Has anyone else had documented heart changes on the MUGA test?? . If you did, what did your oncologist recommend? This is scary, you need the herceptin to treat the cancer but what if it ends up damaging your heart? Thanks for any info
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I finished chemo two weeks ago (which included 12 weekly Herceptin), and now I've been on Herceptin-only for 2 weekly infusions, to continue weekly for a while and switch to every 3 weeks through next June. Fatigue continues, and I suppose it is from Herceptin, or could be a continuing SE from chemo as well. I have the tearing eyes, but now I have blurred vision too. I had it during chemo occasionally, and my vision seemed to get generally poorer (wearing glasses, and current prescription is only 10 months old). But blurring is worse now that I'm on Herceptin-only, so I asked my Onc's office about it and they scheduled me to see an ophthalmologist -- which is today. Have any of you had this symptom, and what would an eye exam show? I wouldn't want to change glasses in the middle of treatment.
Serenitywisdom - Sorry to hear about your heart trouble already! I didn't have a MUGA scan because my Aetna insurance denied coverage, so my Onc switched to an echocardiogram, and I have had only one, back in April, before chemo. I am having my BMX with TEs surgery next week, and have asked about when I will get another echo, and I'm told "after surgery." It would seem to me they'd want to test my heart function before surgery, since I've had Adriamycin and Herceptin. I'll see my PS for pre-op instructions today, so I'll ask him too. Is it typical to get one of the heart scans between chemo and surgery?
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Ann- I get an echo every 3 months. My ins denied MUGA too
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Kriskat: I was told I'd get an echo every 3 months too, but starting when? It has been over 5 months, and then with surgery coming up next week, I thought it might be a good precaution to check the heart. I'm not even due for a repeat EKG because surgery day is slightly before their 6 months requirement.0
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I got my first echo prior to starting TCH and every three months since until I finish herceptin . If u are getting herceptin u should be getting an echo or mugs every three months as standard if care I believe. I would push for this!!
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I've had three echo's: one prior to starting chemo for a baseline, a second after completing AC, and the last one just before surgery, three months after the second one (and after 3 weekly Herceptins and 3 of the every three week Herceptins.) I am on a cardiology study though, so I may be getting extra echo's.
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When I saw my PS today and asked about an echo before next week's surgery, he said I don't need one for him, that it would be up to my oncologist (and she said later). The echo I had before chemo was right after my biopsy, and WOW was that sore having that ultrasound device pressed hard repeatedly on the left breast. How would that feel after BMX with TEs? Another reason I think it would be good to have the echo now, before surgery, and then I wouldn't be due for another until after rads.
The ophthalmologist didn't find anything seriously wrong with my vision or behind my eyes. For the blurry vision, he said to use Systane drops (or similar brand) about 6 times a day for a month. He wrote it up as "dry eye syndrome."
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Serenitywisdom--I had decreased heart function from Adriamycin and Herceptin. My onc put me on a low dose of a blood pressure med (Enalapril aka Vasotec) and that raised my heart function almost to where I started. I did not have high blood pressure, the med was just for my heart function. I had MUGA scans every 6 weeks until the EF was back up, then went back to every 3 months. My EF started at 65%, then was 59% after Adriamycin and before H, then dropped to 51% and that is when my onc put me on the bp med. Last test was 61% and my onc said I won't need to be tested anymore (I finished H in Aug.)
My onc told me if that med didn't work, there were other ones we could try, and I'm glad I didn't have to skip any Herceptin infusions. I was worried that my bp would drop too low, but it never did.
Hope this helps! If your onc doesn't know what to do, then maybe seeing a cardiologist would be a good idea, or even a different onc.
Tina
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Interesting - I had my flu shot while getting Herceptin and didn't have any problems.
My onc differed to the cardiologist for the heart tests. I had one before first Chemo. One at 3 months in, and one at 9 months in. I have another on actually next month. I should also mention that I have a bicuspid aortic value so that was why it was checked so often. No issues from Herceptin at all with the heart function.
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AnnAlive
You might think about requesting that you would really feel a lot more comfortable and at ease by having an echo before your surgery. EKG just tells you about the rhythm of the heart and if they won't do MUGA, then ECHO will tell you more and if you are ok for surgery. I think it is standard of care to have these tests done every 3 months with Herceptin therapy and more if you start to have heart problems. If they say not needed, you might ask why and tell them you heard it was standard of care to have them every 3 months Why do they think you should not have one before surgery?
Re tearing of eyes. It is 2 months PFC, and I am still tearing. Opthomologist says this due to dry eye. and I too have more blurred vision since I started chemo. Obviously there are nerve changes going on with chemo and after effects. I just hope it will clear up eventually. Does anyone know if Herceptin causes tearing or blurriness of vision as well?
Re cardiac problems with Herceptin, my onc said this occurs in less than 5% of people receiving it. I have 6 months more to go so I hope it won't get worse. I have no symptoms right now but I certainly don't want heart damage. Thanks to all of you for chiming in with your experience. Is there anything anyone can do about these side effects or avoiding future damage? Supplements for heart health??
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I aslo had the tearing from the Taxotere. My eye Dr put me on a steroid eyedrop because I had swelling. The tearing went away gradually for me and now 4 month PFC am doing OK. My vision also changed during chemo. It must be a common occurance because the Dr was expecting it.
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serenitywisdom - I went from 73% ejection fraction on ECHO to 55% at almost the end of the herceptin. They were fine with the 55%. I take coQ10. Mine dropped to 55-60% with the first echo that I had after treatment. It hovered in that range the whole time. I think the echo is less precise than the muga but my onc doesn't do muga unless there is a problem.0
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Thanks for all the helpful comments/info
Do people take any other supplements to help with the chemo and then herceptin? . My onc took me off all anti oxidants including Vit C and E, and omega 3 during chemo but said it is now ok to take while I am on Herceptin. I am taking Silica for nails and L Carnitine that hopefully will reduce neuropathy.
Omaz- What is Co q 10 used for? Thanks
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Now that I have been on Herceptin-only for 2 weeks, I am having more trouble with my toenails. The big toenails are lifting, and one is oozing a yellowish discharge, and a few other toenails are a little sore. Does anyone know if it is caused by Taxol or by Herceptin (I was on both for 12 weekly doses)? I talked to my PS about it since any infection will affect my BMX next week, especially TEs. I was referred to see a podiatrist tomorrow morning. I don't think the toe is infected (yet) but need to get it halted or treated, and maybe start antibiotics since there is no time to get a culture back before surgery. Is this an expected side effect -- losing toenails -- and do they tend to get infected? My fingernails are discolored since A/C chemo, but not so bad otherwise except they feel odd when I press on them, which may be due to neuropathy.
Serenitywisdom - My Onc took me off most supplements too, but I have added in a few now that I'm on Herceptin. I have to avoid blood-thinning supplements, though, such as Vit E and fish oil since I have surgery next week. I'd like to take CoQ10 for heart, but will have to ask about it. It has not been one of my regular supplements, but now on Herceptin it probably should be.
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