Herceptin - Quick Side Effects Poll
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Thanks achpurple...I'm curious what kind of heart side effects you had. Did your heart flutter constantly?
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Hello all! I'm new to this thread. I just received my first Herceptin (with taxotere-carboplatin) 6 days ago. Starting yesterday, I got this heavy feeling in my chest with dull pain in my back. Is this normal? Should I be alarmed? I felt fine up untill then.
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On Monday I got my first dose of Herceptin by itself (finished Taxol last week). The only SE med I got before was Tylenol. Today I have a little bit of a rash around my port and three red spots - two on my face and one on my neck plus a little itching around the neck/shoulder area on the side of my port. Has anyone had this? It seems strange itching/rash would start two days later.
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Evebarry: During infusion I often times have what starts out as a "racing" heartbeat but if I try to ignore it then it will get what I call "out of rhythm" - my cardiologist calls them PSVT (Paroxysmal Supra-Ventricular Tachycardia) after I wore a holter monitor for a couple of weeks. They assure me that Herceptin only affects the left ventricles, which affect your ejection fraction, which is why they do ECHO's every 3 months. My highest echo was 65 and my lowest has been 50, which is what I am at right now. My cardiologist says that echo's are also very subjective as to who is reading them at the time. I have realized over time that I cannot drink any caffeine, it makes them so much worse, and I have to drink lots of fluids all the time (I'm not a big drinker usually) or it gets wonky - those two things have helped alot, plus not forgetting to eat - after chemo brain set in, I'd do that a lot.
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I called in everything that made me nervous. It is a good idea to keep in communication with your team. That's what they are there for and I loved the security of knowing I had that cocoon to help me through.
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I called in at least once after the first two infusions. I don't want to make a nucance of myself. My oncologist is aware of my concerns. This is why she had me see a cardiologist.
From what I understand herceptin can weaken the heart muscule. My cardio dr. looked it up and agreed. I am enouraged achpurple made it through treatment. Thanks for the explanation achpurple. Right now I have no knowledge of the numbers you speak of. I'm sure, I'll learn
I am not a coffee drinker, and also stay away from caffine as it gives me the jitters...hyperactive feeling. Can't sleep if I have hot chocolate or any type of chocolate after lunch...really. So, I try to stay away from caffine products. I'm trying to drink more as well.
tc9876 ... hmm, I read heart attack feels like a heavy feeling over your chest. Someone describes it as an elephant sitting on your chest. Other signs are indigestion, arm and jaw pain. I would definately let your oncologist know. If I went to the doctor or called everytime I felt something (since taking herceptin), I fear I would be calling wolf so that if I did have a heart attack no one would take me seriously. This is why they say women are more likely to die of a heart attack, and do. We excuse the pains as being normal, when it could be really a heart attack...or don't want to bother people, plus it cost an arm and leg to go to the er.
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Hello ladies
I had Herceptin dose #21 last Thursday. I receive my Herceptin IV every 3rd Thursday. I seem to be quite fortunate in that really the only SE I'm having is the runny nose. Though recently I notice that I'm having a feeling as if cold sores are trying to break out on my lips. Anyone else get that symtom?
Jackboo I'm from N Ireland and never heard of a MUGA here. In fact I never heard of a MUGa till I found this website. I get an ECG every 3 months and my EF seems to be holding just above 50% which I understand to be the critical figure. If it falls below that you are referred to a cardiologist.
Achpurple my Oncologist says the same about variations in the results of ECGs and CT Scans can depend on who is reading them.
I feel for those of you who are having bad SEs but think of the good that Herceptin is doing us.
Take care.
Frank
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Thank goodness, I have one more Herceptin treatment to go......long year. The side effects I observed were: constantly runny nose, coughs, headaches, stiff painful knee and hips, fatigue, loss of appetite and an occasional diarrhea. My Muga scan dropped from 71% to 61% last fall, delayed treatment for six weeks, then Muga scan results went back up to 71%. During that time, after the three weeks, I felt alot more energenic and had a better appetite. Now, I am looking forward to the conclusion of this segment of treatments..
Hope this helps, God Bless You All.....
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So, my last Herceptin was January 4 and I'm happy to say that I have just noticed that there aren't any crumpled up kleenex's jammed under my keyboard here at work!!! Could it be??? Has my nose stopped dripping????
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Just did my last Herceptin yesterday - #17 - and I can't wait for my nose to stop running!
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Congratulations on finishing achpurple!
Yay for the no more tissues marjie!
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Anyone else have sores inside their nose that make it painful to blow or wipe? If someone pinched the end of my nose I would scream.
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Welcome, Dawn Ellen. Congrats on finishing!!!
I have just four more to go...
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windlass, I've been wondering why I have sores in my nose. I never connected it to herceptin, though. It started during chemo and has continued. Only recently have I started to regain nose hairs, so hopefully it will stop. I'll be on herceptin until November.
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I have been having the almost constant runny nose with sores in my nose and blood when I blow my nose, sometimes even when I don't. Glad to know I'm not the only one but also wish no one else was dealing with this!! I finished Taxol two weeks ago and have received 14 of 52 herceptin tx so far.
Oh, I did also find that using Ocean nasal spray has helped somewhat with the sores and pain in the nose.
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I use aquaphor on my nose around the nostrils, every time I put it on my lips, I put it around the nose it helps.
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Monday I am due my third herceptin infusion. I cancelled it because my plastic surgeon wants to do the exchange implant Tuesday. I am wearing a holter monitor for 24 hours. Tomorrow I will have a echocardiogramn after removing the monitor. It's been about 3 weeks since the last infusion. My heart isn't as erratic, but enough hopefully to see if the herceptin so far has effected my heart before more treatments.
My cardiologist nurse was horified that we would put our heart at risk by taking herceptin. The idea that it flags the immune system to kill any possible cancer cells is what makes me want to continue, but as said before not at the risk of damaging my heart. I am being very proactive in making sure it doesn't.
My younger sister came to visit this last week end. She listened to my heart with the stethoscope and said it was a jumpy heart like hers before it failed. She said I had better be careful or I would be in the same situation as she was....needing a heart transplant. People who have heart problems said don't put your heart at risk. Women are 4X more likely to die of a heart attack than cancer. I feel very pulled.
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I'm wondering if most women taking herceptin have a runny nose? Did it began after several treatments or right away. I have had a few runny nose episoles that lasted a minute or so...nothing to talk about.
The herceptin effects your sinus cavities and heart because they have her2+ genes? Doesn't all our cells have the her2+ genes? Doesn't all our genes or cells need the epidermal growth HER family to turn over cells? Is this why some have problem with nail growth and etc. Initally, before starting herceptin, I thought the herceptin targeted cancer cells only. This is why it was called targeted therapy. It seems to be like chemo in that it targets all cells with the her2+ epidermal growth factor.
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NOSE
The nose problem I have is less an issue of "sores" but more like (sorry to be graphic and gross) glued on hardened crud that hardens and won't come off. As it builds up it plugs up my ability to breathe freely. When I (again sorry) pick them off, I get relief for my breathing, but the area under them becomes scabby, bloody and sore, and it's just a matter of time before the layer of scab and crud builds up again. I seem to remember this problem from when I was pregnant, so I wonder if it's more the result more of estrogen deprivation than Herceptin. (Re estrogen: I went through chemopause from A/C, and am now on tamoxifen.) Whatever it is, I wish it would stop.
HEART
Ladies with heart problems, please PLEASE look into hawthorn. I learned about it from a friend who had congestive heart failure and raised her ejection fraction from the 30's to the 50's. I started taking it daily, and my ejection fraction has actually INCREASED while I've been on Herceptin, whichis practically unheard of. I attribute the benefits to the hawthorn. My oncologist said she sees no reason why I can't take it. It could help you - please check it out.
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Hello sisters
I have posted about my nose before. I have a runny nose quite regularly but just take it as "read" that I will have that problem while I am receiving Herceptin which I will be given for the rest of my life or till it stops working. Here's looking forward to getting H while I'm on a zimmer frame lol. I just keep a (good quality) hankerchief handy. I get my 3 monthly ECG next Tuesday as I have said before I don't think doctors here carry out MUGAs.
Windlass I also suffer a bit from a build up of solid material on the inside of my nose though nowhere near as bad as yourself. I looked at your profile and may I say that I'm most impressed with what you have written and the comparisons that you have drawn between the painting and the events relating to your cancer. I do hope the trial that you are on is successful not only for you but also loads more people.
Sisters You all know that this Saturday is 17th March and I have no need to tell you what is most important about that day ! ! ! So I wish you all " Beannachtai na féile páraig oraibh" which translated from the Irish means "St Patrick's day greetings to you all"
Take care.
Frank
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Thanks, Frank. I'm looking forward to "the wearin' of the green."
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Windlass, there is a saline jel they gave me after sinus surgery to help keep your nose moist. I bought some more for the herceptin nose. it helps when it gets too dry. I got mine at CVS pharmacy it comes as a jell or spray. then I use aquaphor around the outside of my nose for the pain and scabs. I hope that might help you.I usually use it when I remove the hard crust in the morning and then I put in the gel. seems to work for me. Frank, thanks for the St Patty's day wish! I will enjoy my green immodium! LOL! perhaps green tea as well LOL you all take care, much love
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I got a call from the cardio office today in regard to the echocardiogramn. The woman said the echo was normal except one valve area was enlarge...oh nothing to worry about. I ask about the erradic heart beat, she just said that she had them all her life and it's nothing to worry about. She said the cardiologist would see me in a couple of weeks and go over the heart holter monitor as they haven't yet looked at it.
I am ticked. Maybe she had a heart murmur or erratic heart all her life, but I haven't until the herceptin treatments. And I did not have a enlarge heart until recently. I'm looking for a second opinion.
My oncologist is ok with me skipping the Monday herceptin infusion but wants to continue in three weeks. I could possibly see doing it every six weeks. I am tempted after my TX exchange and fat grafting in the near future to move on from cancer by not thinking about it anymore or doing treatments and just trust God for whatever happens. Cancer treatments keep the whole cancer on your mind way too much...as the side effects (I seem to have them more than most) may be worse than the disease.
Sorry, if I seem to be over concerned about all this. If I didn't have side effects, I would continue as most seem to do and be glad all the possible mirco-cancer cells are wiped out by herceptin.
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Hi Eveberry - That wasn't really right of the nurse to say that I agree. She probably just said it instinctively though to try to make you feel better. Have you been over to the Herceptin Heart Attack thread started by TonLee? The ladies there are very knowledgable about herceptin and the heart they may have some ideas/insights to share with you.0
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Hi, Moonflower. Thanks for the tip. Now that I've associated my problem with Herceptin (or overal hormonal flux) I can address it more consciously.
Eveberry: Did you get a chance to ask about Hawthorn?
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Windlass, I haven't seen my oncologist in 3 weeks so I haven't ask her yet. I've have had so much going on and a little timid about trying anything new right now. I will for sure ask about Hawthorn and one other herbal suggested here. I won't be taking herceptin for another 3 weeks. Definately going to check out the heart attack thread. Thanks.
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Anybody fells hungry all the time on the Herceptin? I don't take tamixifen or AI's just herceptin but I can't stop eating!
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Hi, Puce: It's feast or famine here. I am either starving and totally pigging out or get full after two bites.What usually happens is I am starving, so I order something or make something, and then I don't eat hardly any of it. It's the eyes are bigger than the stomach phenomenon.
I also have a more developed gross-out reaction than before. The other night I was eating dinner and there was a tiny worm on something someone else was eating. I was so repulsed I couldn't eat another bite of my own food, and then so nauseated I had to leave the room. I felt queasy for at least an hour, and if I think about it too hard now, I feel just the same.
Despite all of this non-eating, I can't seem to lose weight, even though I have turned into Ms. Health Eating and Ms. Exercise these last months. This is Week #10 of my official fitness regimen through a proscribed gym class, and I've lost a measly 4 pounds. (I suppose it's better than gaining... but c'mon!)
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I also feel queasy quite a bit. Hmmm...
I was sick my first Herceptin treatment but not the others.
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Hi Everyone! I am new to this sight....I have just finished the Taxotere, Carboplatin, Herceptin treatments and have a bilateral mastectomy (not a candidate for reconstruction) scheduled for April 5. I will then, like most of you, continue with the herceptin. I don't know yet if will need radiation. I will learn that after the surgery. I have constant watery eyes, runny nose, cough for a day or two after my treatment, and fatigue. My largest concern is the weight gain. I feel like I must be the only person on the planet that GAINED weight during chemotherapy! Have any of you experienced this and have you found a way to balance this or lose the weight?
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