Herceptin - Quick Side Effects Poll
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gg111 - Hi. When I was getting the herceptin I had some problems and my onc was willing to try changing to the every week schedule or once every two weeks (I only had every 3 weeks). Apparently it is the total dose over the year not necessarily how you get the dose. We ended up slowing the infusion and that helped. You could ask to go back to the weekly infusions.0
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gg111...After my 3rd 3 wk infusions, I asked for a six week break due to my second reconstruction surgery (T.E. excange). I noticed the sixth week after not taking Herceptin, I felt like my old self. I then went back on Herceptin. I've had strong palpitations. I also did the Hollder monitor. It showed strong constant palpitations. Sometimes it seemed as if my chest quivered or jumped. Weird. My oncologist called me about 3 weeks ago taking me off Herceptin until mid-August. My cardio doctor said due to constant Ef decline (from 65 to 44) he doesn't want me on Herceptin. He's ordered me to stop Herceptin and prescribed heart meds. Now, I'm hoping my heart will recover to normal function.
Also...I am scheduled for surgery July 31st. My cardio doctor first is doing a stress test. If it's normal, I'll have surgery, if not I won't.
And from I understand 55 - 50 is low normal. 55 and up are normal. My oncologist said she wouldn't give me Herceptin if my EF went below 50.
We're taking Herceptin and etc to reduce cancer recurrence, but when it comes to heart health, we need to first take care of our heart. It is a necessary organ to live.
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gg111 - I believe the guidelines are to hold Herceptin for 4 weeks of your EF drops 15% or under 50. I'd need to re-read the prescribing guidelines to be sure, but I believe that is correct. You can always read the pamphlet for Herceptin to find out - it's online at the Herceptin website. If EF improves, then rechallenge is usually done. If not, then they often will put you on a betablocker to see if that works to improve EF.
I'm doing once a week Herceptin, just because of reading stories like yours - but it is a pain going and getting stuck once a week. So far my EF has dropped 5% (from 65 to 60). I've had 15 of 51 treatments. I'm not sure if once a week is helping or not - it didn't help evebarry - there's no evidence either way, that I know of. Wish we had some research on this.
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Hi, I just started Hercepton in May of this year. Just had my 4th one day before yesterday (every 3 wks). Feel very achey and had a killer headache the next day. Pretty much like having a migraine and the flu at the same time. Spent the whole day in bed. I have bone mets and the Hercepton is just to slow everything down. Also getting a monthly Xgeva shot for my bones. I was just wondering if the symptoms get better or worse w/ each progressive treatment. Looks like I may be on this a long time.
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Like most of u I had a yr. of herceptin/half of the time I had a cocktail of chemo with it so who knows, but when I was just on herceptin I told my Onc. I smell like a family of skunk all got mad at me at the same time. And none of my usually wonderful perfumes couldn't hide it. Well even now 2and1/2 yrs later Im' trying new perfumes my tried and tru ones don't have the same fragrance onme--I used to always get compliments on what I wore and other people would ask me and buy it for themselves--now NOTHING and whenever I was out someone else would say who smells so good--it was me everyone wold say Camille---Not now. I used Phikosophy, Clean, Tova and Pink sugar--They don't smell the same at all on me now and it's been a while--but the horrendous odor is gone. I know this is not a big deal with all the other SE I'm dealing with but it was my signature fragrance and I can't find one that does it. I have no clue why that odor was so strong but it bothered even me, now my sense of fragrance for my body has totally changed/and these perfumes aren't cheap to keep changing LOL
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Epm- I too am doing the Herceptin, started June 1. I will be having my 4th infusion this Friday along with carboplatin & taxotere. My last infusion I too felt like I was getting the flu, no headache though. I even ran a low grade temp, about 99.4. I feel like the se's are getting a little worse with each one. Anyone out there have any tips to prevent those se's they would be greatly appreciated!
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I'm sorry I poking in again--I always got a fever low grade about once a month for 1-2 days and I srill do ???? aches and pains all the time??? Horrendous Diarrehha and still do at least once a week??? I take meds for all these things but they're still there. So I'm not of any help I know but my Drs. can't figure it out--I've had every test and I still end up the same--so I wouldn't have a clue how to get ive any tips. I'm still reacting. LOL
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mom and cami - How fast do they do your infusions? I have said this before so sorry to repeat myself but slowing the infusion time (every 3 weeks) to 2 hours helped reduce my side effects.0
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Ok I had 3hrs. every week--when I had it by itself for about 8 months cuz it was mixed with chemo at the beginning for 4 months---then I finished chemo like 2 yrs every week then 8 months by itself. But I did stop chemo when I had operations. I was all mixed up and I srill am. LOL
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My infusions are very 3 weeks. Each element takes about 45-1 hour for each one(carboplatin, Herceptin, and taxotere). Not sure how often I will have the Herceptin once the chemo is done. I have 3 more treatments left. I will ask about slowing the Herceptin down when I go on Friday. Thanks for the info.
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to: Omaz, Eveberry and Dancetrancer,
Thank you all for your input and advice. I will be meeting with my Onc this week and I am going to suggest going back to the once a week infusion of Herceptin which will be 150mg instead of 450mg every 3 weeks. I am hoping this will help the side effects that continue to make me feel like crap!!! Major shoulder pain now, can barely bring my left arm over my head to undress without major pain, not sure if it's in the joints or in the bone?? I have a port so I would be fine with getting stuck once a week if it would take away these symptoms, after 6 months of chemo I barely feel the stick anymore...I will keep in touch to let you know if the symptoms change or disappear from going back to single doses.
Eveberry - Good luck with your surgery this week..I will pray for a speedy recovery for you!!
Love to you all...
Grace
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Good luck Grace!0
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gg111...I have major shoulder pain too! I wonder if that is a side effect? i have been so obsessed with my leg pain lol..I get my infusions every 3 weeks until end of November. I am sick of asking my MO about side effects! I have had so many from the chemo etc. 2 weeks ago when I had a pain in my right side i thought SE but it turned out to be appendicitis! The surgeon wnated to know why i waited so long to come in...weel i have a pain her or there like everyday am I suppose to call all the time yikes some days you just don't know what to do!0
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Best wishes Grace - and please do keep us posted!
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Jittersmom: OMG!! Know exactly what you mean. Had a dizzy spell last week and headaches and they sent me in for brain MRI, looking 4 brain mets. When I saw ONC 3 days later, didn't even tell him everything else that was on my list, including my shoulder pain!!
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All right this is enough----WHAT IS THIS THING WITH SO MANY HAVING ONE SHOULDER THST'S SO PAINFUL???? I don't get it--I've read it here so often and I'm way done with all my chemo and hercepton. Now ot's not painful everyday. but it is irratating everyday and of course the other ones it's painful--but just one side Are there answers anywhere.?.
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cami - I am sorry your shoulder is so painful!! How has it been evaluated so far? I have read here that frozen shoulder can happen during treatment - maybe an evaluation and physical therapy would help??0
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Omaz TY--I do tell people it's from years of volleyball (I did playfor 25 yrs.) so it makes me sound athletic. I did get this before chemo (forgot what it was) but chemo and stuff intensified it so it's just pain pills I take for my that and my bones, joints. I do say chemo does so much to our bodies????
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Don't forget shoulder issues can be related to breast surgeries and radiation...
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Dancetrance that would totally complet the picture.
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cami - I have the feeling that you have a great sense of humor!! What is "TY"?0
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Thank you---that's what it means--Stay out of u'r horrendous heat that u'r sending our way. LOL
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Officially done Herceptin.. am not getting the last three treatments.. to hard on the heart.. Had some heart palpitations after the lat treatment even though I am on two heart meds. MO decided no more.. not worth the chance.. Have had 14 out of 17 treatments. I am confident that the last 3 would not make a difference.. was told by MO that the first 4 I got along Chemo are the mot important once..
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Congrats on being done Ossa!0
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Ossa
I have my SIMA on Friday before Herceptin TX. My EF is 56 so I guess I too will find out if I will be continueing. Good info from your MO. Is 17 the standard?
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Congrats Ossa for being done! I just finished 6 of 17 and not sure I will make the course. Heart not happy - will see next scan and how my breathing goes over the next few weeks. Take care everyone! vjm xo
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Ossa glad u'r done---I jave noe idea what the standard is I just know what I got--it seems like it's different for alot of us.
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Accprding to my MO 17 i standard..wish I could have gotten all 17, but I am happy with 14.. now just tamoxifen and metformin (trial study) for the next 4years 5 months ( done 7 months)0
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I had Herceptin with TCHx 6 and during the two weeks in between the TC. So if you count the TCH and the other two as making up a whole Herceptin, that is 6, then you have the Herceptin for a year, every 3 weeks. If I counted right that is 11 full tx after the 6 TCH, which is 17. If that is figured right.
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Oh OK--well for some reason I had 52 every week--whatever that means.
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