Herceptin - Quick Side Effects Poll
Comments
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OK now I'm hearing lots of folks doing 17. I feel better now.
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Grace, lago, glad to hear there are some others getting it over 30 minutes. I feel like I have more joint pain in my elbow so far, but I'll be the first to admit it could be in my head also. It's hard to tell also because I am trying to be more active also...
lago, my MO said for a year, I was thinking it would be 17, but haven't confirmed with MO or nurses.
Cindy, I describe mine as bone pain, but probably more accurate to say joint pain as it seems to be in my knees and elbows.
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I don't have any SE at all, except for the runny nose. My infusion takes 60 minutes and they don't monitor me afterwards.
I will have Herceptin for a total of one year, I don't know if that means 17 or 18 treatments.
I guess that is the same as for everything we're going trough in this journey, no one knows exactly how much we should have, or if we benefit from it.....
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InTwo Places - I meant to say that before also. Seems many are getting infusions over 1.5hrs. It continues to amaze me the differences in the same treatments that I hear of!
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My infusions are also over 90 minutes.
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Readingmama-I have terrible pain in my elbows!
My onco in Japan and my US one said 17 on the three week schedule.0 -
Didn't know you could get the infusion in only 30 minutes. Like someone else said here, I started H with Taxol and got it weekly for 30 min., and then when I switched to every 3 weeks they started giving it to me over 90 min., because it's 3x the amount. It was my choice to switch to every 3 weeks, I could have stayed on the weekly schedule if I wanted. There is no "observation' period like Frank has. I'm free to go as soon as they unhook me.
I don't know how many tx I'll have total, because I started with it weekly, then switched. I just know it'll be a year! Mid Aug. is my last one.
I do still have a drippy nose too. I am never without a tissue. It was much worse before, though, when I didn't have nose hair--then it poured right out if I wasn't careful! Thankfully most of my joint pain went away after Taxol. Now I just have normal aches and pains, and stiffness. Tiredness is my biggest complaint for a few days after tx, and sometimes a little nausea.
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My 1st Herceptin was over 90min. The weekly ones were 30min. I am told my 3 week infusions will also be 30 minutes. So far my only SE is a runny nose. I am free to go as soon as I'm unplugged.
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I am scheduled for 18 tx. I have 3 left to go. My infusions are 30 minutes, with 15 min. flush before and after, totalling an hour, no monitoring after. I started Jan. 30, 2010, and will not finish until July of 2011 because I've had tx postponed a few times due to low EF. So, a year and a half for me.
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Omaz.......
Yes, Omaz, I have a port and can hardly wait to get the thing pulled. Bra straps rub, some times a brief burning sensation (like a nerve) pinched. Glad I had it for all the chemo, but in the beginning I had more issues with it than I did the incision from the MX.
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NormaJean - I feel the same way. Glad I had it, will be glad to have it removed!0
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Bra? Hmmm I haven't worn one of those since August 31st the day I went in for my BMX. (I dont' count that training bra that was 3X too big for me that my PS gave me to wear after surgery). Camis, Muscle Tees or al fresco for me. It's going to be a big adjustment after the exchange.
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Have my 9 th perception today. Herceptin and I have a love-hate relationship these days due to the joint pain and other side effects I get. This is the first time I am actually dreading going....feels like chemo again.
Christine0 -
I'm with Slainte, I go for Herceptin tomorrow and am dreading it! The aches and pains are really taking a toll on me and I don't want to go any more. But.... I know I need the drug. This whole cancer thing sucks.
Anyone feel like the people around you don't get it? They think your treatment is over when it's really not? I constantly have to explain that I still get a drug that has some chemo like side effects. No one understands it.
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Count me in too! I go tomorrow and it will take a pack of horses to get me there. I totally understand and just wish for a break! My body is tired and my mind is exhausted I think the people around are sympathetic but until you know what this is like you really can't understand. This whole fighting process to me is by definition masochistic in the sense we are forcing our bodies repeatedly to endure a physical pain. That is the hardest part for me to wrap my head around! Good luck and I hope we all get through this with then least SE.
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I go for herceptin tomorrow too, number 14!, and feel exactly as you do michcon. nmoss I hope you have an easier time this round.0
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Well my herceptin is in, to me it is like getting the flu instantly through injection lol. Saw my dr and we are trying a bit of a new strategy for the joint pain. I have been on Voltaren, a NSAID once daily but was taking it at night. I have major trouble sleeping because of the pain. He told me to take it in the am and is now adding Elavil at night. I have had it in the past to help with sleep and chronic pain. We will see if it helps. Also have Zopiclone for sleeping if things get really bad. I am a regular walking pharmacy again .
)
Christine
PS. Already have drippy nose and can barely keep my eyes open....just like having the flu0 -
Had my last one on Thursday and yesterday was a bust!! NOOOOOOO energy! However, it was my last one! Whoo Hoo! Hang in there ladies! I think those of us hormone positive are probably also feeling the lovely side effects from those pills! UGHHHHHHHHHHH!
You are right - people just don't get it! My hair is growing back and they say, "You don't look like you are still getting chemo!" I have to explain a bunch of stuff, so I find myself avoiding situations where I have to interact with a bunch of new people that I haven't already explained to!
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Grace - Congratulations!!! I have 3 more after the one I am getting right this very minute!0
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Hi everyone!
I will be having Herceptin until October 2011. I finished chemo about 9 weeks ago.
Side effects:
- Keeping the weight on! It seems almost impossible to lose it. I gained 22 during chemo and Herceptin
- Runny nose and eyes
- Bloody nose all the time
- Puffiness and edema everywhere
- Very achy joints and muscles despite being very active.
I am very tired of this. Any suggestions would be most welcome. I do get acupuncture which seems to help.
My infusion takes about 1 hour at most.
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And yes, Michcon, I feel like everyone wants me to be back to normal now! I am not and I can't keep telling everyone about it. It is tiring.
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hillck - I hope the bone pain gets better off the tam. I asked the gal that I read who had bone pain to PM you, I hope she did.0
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Good hillck - With so many things going on it's so hard to know what SE is due to what medication or to hormonal changes from treatment!0
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I am halfway through my year of Herceptin and have had no SE. The infusion takes 30 mins, not counting the premeds. I did notice on my 6 month ECHO that my ventricles were mildly dilated, but my LVEF has increased to my pre-treatment numbers ( 60-65%). I get a paper copy of every test that I have so that I can compare stats. Is anyone taking any supplements to protect their heart?
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finished herceptin 18 mth ago. treatmnt every 3 weeks for year after initial chemo of 20 weeks. I had forgotten the runny nose, always felt I was catching a cold. fingernails finally came back, but toenails are still hard, thick, and discolored. Hair was always so thick, but now very thin and fine - bald was almost better. As far as serious side effects, I was spared. Never missed a day of work during all of my chemo and herceptin treatments
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I am not taking supplements to protect heart.
Although I admist as before that it could be in my head, or due to something else, I do feel my joint pain has been worse this go round due to the shorter infusion time. I will be definately checking the machine from now on to make sure that it says 60 minutes!
And what pre-meds? I get saline, which drips in with the Herceptin, but nothing else. I do not get monitored afterwards. Once its done, I leave.
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I'd like to know what premeds also - I get none, just saline while I'm waiting for them to get the Herceptin ready and to flush my port, then Herceptin for 1 1/2 hours, then I'm out of there!
I do take CoQ10 for my heart with the oncologist's okay.
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I don't get any premeds with herceptin--like the others, just saline before and after. Mine is 90 mins., like achpurple.
I'm not taking any supplements, just a med to bring my heart function back up, because it dropped from 65 to 51. Its up to 61 now.
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Hello All
Posted this on another thread but posting it on here as well.
Well had my 3 weekly dose of Herceptin on Wednesday and by coincidence my 3 monthly CT Scan on Thursday.
In the space of 2 days got through 4 shirts, 3 because of blood staining lol. Wednesday morning went and gave bloods and saw Onc. Nurses rarely have a prob getting a good vein with me and then afterwards she put cotton wool and plaster on where she had taken bloods, vein just pumped on and blood seeped thru onto shirt sleeve. I don't live far from hospital/clinic so as usual went home for lunch and changed shirt. Came back and received my H. When nurse removed the canula and put on cotton wool and plaster more leakage so when I got home on Wednesday afternoon shirt changed 2nd time in the day.
Thursday afternoon went for the CT Scan - or as SIL calls it my Scam lol. Same thing happened when nurse removed the canula where she had put in the dye. Blood seeped thru and stained shirt. So when I got home changed my shirt for the 2nd time that day - that was 2 days in a row lol. Obviously each time the nurse replaced the cotton wool and plaster and kept pressure on for a while longer. Not blaming the nurses I just have good strong veins - every one of the nurses in that clinic is just overflowing with TLC. Now there are 3 shirts steeping in cold water to remove blood staining lol.
I have only a few minor SEs. Like pinkRNC I have not missed any days from office because of SEs and will be back into the office the day after my treatment. Mentioned before about brittle nails, hair a bit thin and lifeless and tendency to a runny nose. Are any of you experiencing nose bleeds? This past while I have been having a bit of bleeding from my nose. Mainly in the mornings and more spotting in my handkerchief rather than a blood flow - if you know what I mean.
I'm off for a holiday for a week tomorrow (Saturday) to Malta - an island in the Mediterranean so in the meantime Take care all.
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Yes Frank had another nose bleed this morning. No obvious reason, didn't even have runny nose today and hadn't been blowing it . No more black eyes but I do have very dark reddish vein type colouring under my eyes for a few days after each infusion. I am also feeling nauseous now. I have 2 more to go , Am seeing the Onc next week. Had heart scan yesterday and blood tests so fingers crossed. I am really impressed that you have worked while on Herceptin, I know many others have as well. I am so tired all the time and find it really hard to get up and go. I've taken advantage of being signed off until it is over. Anyone else had the nausea ?
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