Herceptin - Quick Side Effects Poll
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I don't know how many I get . I had it weekly all through chemo and rad. I know I am getting it for a year because I know I get it for a year because I started last Aug.
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Hi one & all--I have been on herceptin since last July--1 more to go. Also on Femara .I hurt everyday like the day after having a car accident. Mainly my back, but my shoulders & hips like to join in. Both of these drugs cause the aches & pains along with weight gain. Have had cat scans, bone scans,bone density & MRI--nothing shows up so the only conclusion is the drugs. Also have thinning eyebrows & my nails are a mess.Aside from that I'm as fit as a fiddle. I'm thankful to receive the care & to be alive to complain---looking forward to be able to using words other than ouch, that didn't feel good, etc. Hang in there guys & gals, we will make it
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Finished Chemo in April, but going thru Radiation now (only one more week). Herceptin every 3 weeks until January. Symptoms I've noticed:
Fatigue (even worse because of the Radiation) but have trouble sleeping even with Restoril
Occasional runny nose
Headache (generally just mild, but seems like it's always lurking!)
Dry eyes (anyone else???)
Funny taste in mouth that makes most food taste different or have no flavor
Body aches--neck, across shoulders, left elbow and knee, mid and lower back--that get progressively worse until almost unbearable in evenings. Also worse when it's hot outside! (Noticed with the recent high temps....)
Tingling in toes
Weight gain (although I'm TRYING to eat right but sweets seem to be the only thing I can taste that don't tast wrong!)
Mentioned these symptoms to my Oncologist, and he suggested I might try some counseling. I'm really relieved to see that I'm not the only one with similar symptoms!
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Lalala19 you and I must share the same onc! I have pain in joints & muscle pain in legs. Weight gsin & runny nose. I told my onc and he suggested counseling to! What I did notice the slower the TX makes a difference in the SE. Good luck to all of us.
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nmoss - did you ask your onc about 5 and 6?0
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Hi Omaz! I see him tuesday for H. I will ask him then.
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What's with these Dr.s ?They give us drugs with mega side effects, they always ask how we're doing & when we tell them , it's all in our heads or we need councelling.I'm grateful to be given this greater chance for survival, but please don't tell me what I feel & others, it's all in our heads. So far my onc hasn't suggested my symptoms are all in my head,I feel the frustration, almost anger, for all who have. It does help to share what we feel, at times it feels like we are all alone--family can't help too much, except to takeover chores that hurt. My last H. is 20th of this month. So looking forward to getting some relief. Take care one & all.
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Until stumbling onto this site, I've been blaming the way I feel on the Chemo that I finished in April. I've been getting the herceptin over 1/2 hour and thinking it wasn't a problem. So, maybe if I have them slow it down, it'll be better?? I'm getting REALLY tired of feeling this way! How many more do you have, and are they doing anything to help you feel better? I'm afraid for things to get WORSE and I have many treatments to go.... Is there something I can do for myself?? I've been doing a little gardening early in the day. It's getting too hot to go out in the afternoons right now....
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lalalu - Sorry you are not feeling well! I think the original protocol for the every 3 week herceptin was 90 minute infusions. Ask to try that. I have to be firm with the nurses because they always want to speed it up, I go over 2 hours now and it helps me. The slower infusion time was my onc's suggestion! Hope it helps! I think exercise also helps. I feel much better all around if I exercise everyday now, walking, swim, exercise bike, some weights - keep moving. And, as always the mantra of drink drink drink lots of water.0
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Thanks, Omaz...I'm doing radiation right now and have some pretty sensitive spots (actually some blistering). Taking a long weekend (4 days) in hopes that things will heal a little. I only have one more week, but it's a "boost". Of course, in the area that hurts the most!
They said to avoid the chlorine in the pool (my skin too sensitive right now) or I'd be there! I do walk my little dog while it's cool outside, but as soon as I start sweating, skin starts burning....Radiation will be over soon, so hopefully, things will heal up quickly and Sophie and I can get out more! I drink water constantly (dry mouth), so that's no problem!
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lalalu - I finished rads in feb. Congrats on being almost done!0
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Hi,
I was wondering how come yow were given Herceptin. I had a tumor .2mm and no chemo or herceptin. I was er pr negative, but her2 positive. You can email if you like at bmmargie@yahoo.com.
Hugs,
Cookie
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Cookie2009--My Dr said it was because of the Size (1.7cm) and Grade (3) of the tumor; I had a "micro-dot" of disease in one of the 3 "Sentinal Nodes" that I had removed; and the fact that my 2009 mammo was clean.
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I start my radiation tomorrow along w/the 3wk herceptin after having chemo E/C ( "A" chemo was out of stock !) for 4 treatments over 2 months, then had Taxol/Herceptin weekly for 12 weeks. No breaks inbetween. Pre meds for the above were corticosteroids, benedryl, tylenon 2 pills, aloxi for anitnausea and zantac (all IV). Been told only benedryl w/the 3wk herceptin but my Dr will admin it over 11/2 hrs. Had port removed the very next day after the last taxol/herceptin treatment. Very empowering to get that "thing" put of me!! My veins are good and every 3wks should heal just fine. My echos have been, so far, in the 60-65%. I am very active, dance competitve ballroom, have continued to dance and througout the 2 surgeries and the chemos. Did a competition w/my tanned bald head, (spray on tan, Dr would have flipped if it were real) Have a bit of struggle w/energy and stamina but am more active than most of my non-cancer pt friends.
Have been told joint aches and fatigue are the side affects. Motrin ok to take. Just wondering how the radiation combined w/the herceptin will affect me. Attitude is everything and if I have to be going through this than the treatments must fit into my lifestyle not me into it it's. I am cancer free in my heart and soul, I truely believe it as the surgeries got clear margins and I am node neg,
BTW my radiologist told me and I quote "You will get cancer again" switched to his partner, what a BLEEP to tell me that! He said because I had chemo and now getting radiation, it mutates the cells and I will get cancer again....UH NOT
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So my sciatica has been bothering me on and off for a few weeks. Nothing super painful, just kind of there. It was triggered by the stuff that used to always trigger it (like driving in heels), but it hasn't gone away as fast as it used to. Of course, i'm now in chemopause, so i think my body is a little confused and not bouncing back as quickly from stuff. Anyone else experience this, as a side effect from Herceptin or chemo in general? I didn't know where to post this...
Also, my doctor swears that Herceptin doesn't affect hair growth, but i have seen several posts here that say it slows hair growth down. My hair did seem to slow down at the end of May, which is when I started Herceptin. Comments?
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tdsmgb,
your radiologist is an asshole. don't believe him. what a creep.
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tdsmgb - That radiologist should be reported! I don't know where you report such things but that is inexcusable. I did radiation and herceptin. My fatigue was actually the worst after I finished for about 4 weeks and then it got better. It's a weird fatigue, I would go along all day ok and then bam, time for a nap. Be sure to lube your skin profusely during rads, take a picture of your fields when they draw them on so you know where to lube. Don't forget under the arm. Best wishes - so glad you changed rad oncs.0
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Ado thank you. yes the holiday was great and someday I hope to go back to Malta. You certainly deserved that treat. I go out walking regularly and then treat myself later to some of the black stuff ! ! You probably ate your magnum, over here some years back certain people procured Magnums and used them to shoot each other lol. Seriously though I do think that if you are able to do some exercise it helps the body tremendously. With regard to more holidays am going down to Dublin next week for a few days and will go away for a few days (in Ireland) in August but hope to go to Italy in September. When you are fighting cancer it focuses your mind and you realize how petty some problems (and also some people) are.
Sweetbean my pic shows me with a full head of curlyish hair - that was prior to chemo and herceptin. My hair is now thin and straight and my nails are very brittle and have a bit of a runny nose but apart from that I'm very fortunate with no other SEs.
tdsmgb that was an awful thing for your radiologist to say apart from the fact that he is probably not qualified to make that diagnosis. You should consider making a complaint. You are right about your lifestyle. You dictate to the cancer not the other way about.
Take care all.
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tdsmgb--The fatigue may be worse having H and rads together. Hard to say--I know rads made me very tired, and I don't know how much was from the H. Don't plan on having joint pain, not everyone does, but it is good to be aware it can happen. I'm not sure why you would need benedryl with the H, but if you do well with H the first time, then I would ask them to give you it w/o the benedryl next time. I hate Bendryl--makes me sooo tired, and then I feel like crap. I don't get any pre-meds with H. That's great that you are keeping up with your exercise! I've heard that helps a lot with stiffness and aches and pains. I can't believe your ro actually said something like that! That makes no sense--what a jerk!!
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Sweetbean - my hair grew just fine on Herceptin.
I am now just over 6 months out from last Herceptin, and 16 months PFC, I have bangs, hair about 6 inches long, and it is a curly mess, but I love it. I did take Biotin after chemo, but quit that when the hair started to grow. There is a whole hair, hair, hair thread that you should check out also.
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Hi Ladies anyone ever hear of H making your refraction rate better? I had a disastrous time this AM for my 3 week TX of H. I had my 3 month Muga 2 weeks ago and no one could find my results! Apparently the radiologists had not read them in 2 weeks! So after sitting there for 3 hrs my temporary onc (mine is on vacation) sent me home only to call me an hour later saying everything was good an my results was 76%. When I started chemo & H in March it was only 67%...So I have to go back tomorrow for H but the whole thing was very weird and I am not sure about that number...
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Number 18 cancelled as 17 is the protocol so having psyched myself up for the final one I was at a bit of a loose end so we went out for a meal to celebrate . Rather than feeling tired on thursday night I drank champagne and had a great meal with my husband without whom I could never have got through this. Whenever we go out now our toast is always to good health and I wish that for you all.
I want to stay in touch with you all as this site has been a rock for me. Have a great weekend and good health to all.
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Ado - Do you have a reference for 17 as the protocol? They told me 18 total. I hope the 18th is protocol here because I sure don't want to have to pay for it myself! And, Congratulations on completing treatment!!
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Ado, Congratulations on being done and kudos to your DH for helping you through this long ordeal. I will drink a toast to you with this great quote by Bette Davis: "There comes a time in every woman's life when the only thing that helps is a glass of champagne". Herceptin is over. Let the champagne flow.
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Omaz all I know is that they have a protocol here which says 17. If however you are part of the Persephone trial comparing 6 months with 12 months Herceptin then you get 18. I will ask my Oncologist next time. There is no way you would have to pay for it yourself. Thanks for your congratulations your time will soon come.
Bon what a great quote I love it and will now adopt it as my own I'm sure Bet wouldn't mind but then again she was a miserable old dear wasn't she ! I really love champagne now even Prosecco isn't good enough anymore. Life is to short for anything less than champers !
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Ado - Any news one way or the other leaking out from the Persephone trial? I am very curious about that.0
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Congratulations on being DONE Ado!
nmoss--that is strange that your number would be better. And 76% is very high--I don't often hear that number. It could be that one of your tests was off for some reason. Regardless, your heart is probable fine, no reason to worry something might be wrong. But I know I would be wondering about those results too.
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Off to herceptin number 16. I looked at my insurance this morning and one of my herceptin visits is $10,000 billed to the insurance and then since I am in-network it is reduced to $5,000. Thanks for insurance, be super super hard to do this without it!!
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I did #16 today, one more to go!
Omaz - I look at the Insurance Bills too, amazing how much cancer drugs cost.
Anyone have their doctor say no more MUGAs needed? Mine said since my first 3 were fine, that I don't need any more. It makes me very nervous. Everything about this disease makes me nervous.
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Taken 3 Herceptin treatment to date. I haven't had any severe side effects so far except for the water tasting weird. So I would mix couple tablespoons of Tang and this seemed to help.
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