Herceptin - Quick Side Effects Poll
Comments
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No doc never suggested quitting but over time it got much better. I was crawling for about 2-3 weeks in the beginning. Hugs to you.
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Thanks, Omaz. Got the port removed yesterday. Feeling so normal.
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That is what onc said, usually it gets better after first couple txs, but I just had #8 and it was getting worse, I'll see how this one goes. Had tx on Wed. and so far not bad. Thx for the hugs.
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lynbell - Nice to get the port out!!0
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OMG! I just had my first herceptin and this was worse than chemo!! Fever, body aches and the worst headache I have ever had! I had to call the onc for a prescription for imitrex (for migraines). I read TE headaches were a side effect, but this onc was like, "I haven't heard of herceptin causing that.". Then she told me to take Tylenol. Like I hadn't thought of that!! 2 vicodin were taking care of it, so of course I should've thought to take Tylenol!!! Hahaha. Some docs are so clueless!!
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Hello Ladies
The swelling in my left index finger is not causing any pain. The only reason I posted about it was that I was curious. However apart from that I am not really experiencing any other SEs. I go to the office each day and go about my normal life. I get an ECG every 3 months and so far my EF is OK. I get dose #15 this Thursday.
serenity, nmoss and kay1963 I certainly don't have any thing near those SEs. I can go for regular walks, at a reasonable pace, of an hour/ hour and a half. I'm sorry to hear that you or any of you are suffering such pain.
Survivor2Be are you on any other medication which might have caused those symptoms? That was an awful set of SEs that you got. Herceptin is some what famous in the cancer drugs for having so little SEs. Having said that, I know an anaesthetist who will tell you that every single drug/chemical which you put into your body will have a SE. It's just that some are so slight that you don't realise it.
Take care all.
Frank
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I get my H tomorrow and I am going to ask the Onc about the joint pain. I started my BC journey getting both my knees scoped (found out bewteen #1 and 2 abou the cancer). It was the best thing I have ever done for myself. They felt wonderful all summer but now I am like Kay-crawling up the stairs ect. If I sit for any longer than 10-15 minutes it takes 5 minutes to straighten them up and make sure they will support me. Onxe I am up it isn;t bad-more like a toothache in the knees. Still walking daily and working out but it really is getting to be more than annoying.
I never had the problem when I was on the TCH so why now that I am getting just the H are they so bad? I have scans coming up in early Nov (including bone) so I guess they will be able to see if my knees are inflamed. I wanted to hold off on seeing the orthopedic guy-he will want to do all the x-rays, MRI, ect and I hate to ramp it up if it is drug induced. Am really expecting him to say the H has nothing to do with it.
Every place else feels fine. It seems like it has picked my weakest spot to work on. I have been taking Aleve but it doesn;t seem to help at all.
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Survivor2B - I was like that at first too and was really frustrated when my onc kind of dismissed it. Body aches and headaches, sometimes severe. It gets better.0
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Lilylady, our experience with Herceptin seems to be exactly the same. I am going to try taking glucossamine and see if it helps. Never had knee problems beforem this.
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Got My H yesterday and the onc saw how poorly I was moving getting off the exam table. I told him my knees are killing me and he said "try taking some Aleve twice a day". I love this guy but I could have slapped him. I told him "Why didn;t I think of that?".
I am going to go see the orthopdeic guy and let him take a look. He told me back in March there wasn;t much else he could do for me other than replacing them-and I am not going there. Maybe he will offer better drugs??
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I started Herceptin with Taxol in May and had weekly doses until late July, when I began AC. I finished chemo on 9/6 and resumed Herceptin on 9/27. I will continue to get it every 3 weeks until next May. I was curious to see which SE's I would have with Herceptin alone. So far, the first "loading dose"(1 1/2 hours) caused a runny nose and some minor discomfort with urination. Anyone else experience this? I guess I might not have been doing good with fluid intake. With the second dose (1 hour), I only noticed a very slight runny nose. I also have a bit of dry skin but I am not sure if this is due to after-effects from chemo or the Herceptin. Any thoughts?
From now until May, I am only set to get a "normal" dose (30 mins) every three weeks so, I am assuming the SE's will be very minimal.
I am sorry for those of you with more serious problems. What sucks is that there aren't any alternative options yet.0 -
I finished a year of herceptin treatment the end of June 2011. I'm still having aches and chills about every week or week and a half. Sometimes very mild, sometimes severe. Has anybody else had this problem. My doc told me I could expect side effects for a year, but I didn't think they would be this bad. Today was a horrific day.
Laura C
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Some of you that are getting headaches and such from the infusion might want to ask to have the infusion slowed down. I think others have said on here that it helped with their side effects. The cancer center I go to does everyones H infusions over 90 minutes (every 3 weeks). That's the standard here. Not sure why some get it over 30, I kept forgetting to ask my nurse!
Sorry to those having such pain. I finished H in Aug, and am feeling pretty good. I do have joint and hip stiffness when I stand up, but that started after my first chemo (for a different cancer). The chemo and rads put me into early menopause and I think that was the cause of all my joint pain then. It's gotten better with time--hope yours does too!
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Hi All. does anyone of you get some dizzyness as SE?
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If you're getting dizzy, your blood pressure may be low. I think that is a SE of Herceptin. Just a thought. Can you get your bp checked?
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OH, I did not know that. And my PB is always low to start with....so that could explain it. I will have it check. Thanks Kay.
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Hi, my last H was in sept. 2011, still have dizzy spells and joint pain...
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JeanneR A well known SE of Herceptin is that it can affect your heart and in particular your Ejection Fraction which is (in lay terms and my understanding of it) the fraction of blood pumped from the right and left ventricles with each heart beat. Before you started on the Herceptin did you not have an ECG? Alternatively in North America you also have a MUGA - never heard of that over here? I had an ECG before I started the treatment and have one every 3 months to monitor my heart. If your EF falls below 50% or drops more than 10%age points between treatments you will probably be given some tablets to improve your blood pressure. I had dose #15 last Thursday and thankfully don't seem to be suffering any bad SEs other than brittle nails and runny nose.
Starella I have heard of people on Herceptin complaining about sore joints though you will probably find Oncs will say that it is something other than the Herceptin. I have one swollen joint on my left index finger but blood tests point to it being a little touch of Gout. No doubt brought about by my high living LOL.
Take care.
Frank
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Hi Frank. Yes, I did get a MUGA before I started, which came back as 70%, and my next one is Nov 22, then meeting my oncologist on Dec 02. Today I am perfectly OK, so maybe it was just a bad digestion or something like that? I find that I am paranoid about anything that is not completetly normal. I have to stop that and learn to relax better. Thanks for answering, this place is always so nice for answers, suggestions, encouragements, etc.
Thanks a lot, Jeanne,
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Jeanne - it's hard not to wonder about all the aches and pains we get anymore! If something isn't normal for you though, for sure follow it up. I have found that my SE's from Herceptin have definitely lessened, and they seemed to be very in time with my tx cycle.0
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All my joints hurt. Thought it was from inactivity and now moving around, but I really do think it is from the Herceptin. I am worried about going into surgery Monday feeling so deconditioned. Ugh....
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Southamptonmom, what kind of surgery are you getting? I had neoadjuvant chemo and had uniMX and DIEP three weeks after Taxotere and Herceptin and two days after Herceptin only and did very well. I am sure you will too, I was told that I would take longer to heal because of the chemo (as you know most women have sx first), but healed fine, am now 2 weeks away from finishing rads. Sending good thoughts and wishes for a smooth surgery and easy recovery.
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I went for DIEP consult at HUP, but don't think I am having any reconstruction. I'm more worried because I was sick and in the hospital and ended up septic and in bed for a month. I am still having difficulty walking, and generally a lot of pain. I feel like the joint pain is getting worse than better.
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Geez, that's rough! I hope you have an easier time with surgery. I'm sure yur docs will be careful and make sure your body is ready for the surgery.
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Tomorrow I am getting Herceptin #15. Looks like my last one will be Jan 4th, then port comes out the next week, and they are cutting me loose
...no scans no nothing - don't let the door hit you on the way out, lol! 0 -
Marjie - sounds like you have your countdown till final Herceptin clock going! I was the same way! I scheduled by port removal to be done at the same time as my exchange. So happy to get that port out!
My oncologist has me on a every 3 month followup for year 1, then every 6 months for years 2 to 5. He does routine bloodwork at each appt, but no routine scans. I asked about this, and he mentioned that scans would be done if I had any unusually aches or pains that lasted longer than 2 weeks. It is up to me to be aware of I how feel and that I would know when something wasn't right. I am sure they have a followup plan for you as you get closer to that last H.
BTW - we have almost identical diagnosis too.
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stlcardsfan - my onc said the same thing...report any aches and pains that last more than 2 weeks but moving forward, she's handing me over to my family doctor.
Look at that...except for surgery, we are the same!
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Ok, my wife was diagnosed with triple negative in 2009. After surgery, 4 AC treatments, 4 months of Paclitaxol(?) and 6 weeks of radiation, she was free of cancer. Well, we just discovered it has returned in her bones and is now HER2+. Has anyone experienced this?? Doc has her on Xeloda and is just now starting her on Herceptin. What can we expect???
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Sorry I don't remember names, but I also found that the joint pain got better the farther I got away from chemo, but I definately had joint pain past #9, but it did get better. I also found walking helped.
I get headaches as well, those have not stopped, although they are worse after some treatments than others. I also agree that slowing the infusion down can help, mine is over 1 hour and by accident I had one over 30 minutes and the SE's were definately worse that time.
Only 2 more to go for me! marjie and stlcardsfan - me too as far as blood work and only scans if there are physical symptoms.
Unfortunately, I have just been dx again (need to update my sig), even though I'm still on H for the first one! It has tested Her2- though. My BMX is scheduled for the day after my last H. For my first tumor, they biopsied it twice, first time Her2-, second time Her2+, hence the Herceptin. But they think it might be the same cancer, even though its in a different quadrant.
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Does anyone get really tired a few days after infusion?
This thread is long so I may have just over looked it.I had #13 today. Typically by Sunday, fatigue overwhelms me and I sleep on and off all day. It's usually just the one day and by Monday afternoon, I feel my spark return.
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