Herceptin - Quick Side Effects Poll
Comments
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Hello everyone I'm afraid you'll all be disappointed with me--I quit Herceptin. I was due for 15 this coming Wednesday and couldn't face the black days ahead that come with the treatment. I called my Onc and he was very nice about it. He said that he was surprised I made it to 14 and that there really was no established protocol for how long Herceptin should be taken especially for early stage cancer with no lymph node involvement. Some doctors go with 9 mos. some with 12 mos. he said and he was fine with my 14 treatments. Quite frankly I'm relieved to be done with it. In my opinion my body simply couldn't take any more. It was my body that made me quit. I feel for you Bon and all the others out there who are suffering the way I did. I have no idea how long it will take me to recover my strength--I suspect longer than I think. In a way I'm disappointed with myself in another way I believe I made the right decision for me. I should have quit after 12. I'll keep you posted as to how my recovery is going.
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Isis - You made the right choice for you! If it makes you feel more secure in your decision know there are two big (thousands of women) trials in Europe/England that are testing 6 months of herceptin compared to 12 months. They must feel pretty confident that 6 months is effective if they can justify enrolling thousands of women. (((hugs))) I hope you feel better really soon!!0
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Lago thank you for your suggestions - I wil start taking additional supplementsnand see if that will help. I have also bought an arm compression sleeve to see if this will help with the finger swelling. In will keep you posted. Will try whatever I need to. I appreciate the support.
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Isis--Pat yourself on the back for making it as long as you did! Nothing to feel bad about! You gave it everything you had, and then some. Hope you can start feeling better soon!
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I am so encouraged that you are not only experiencing what I am but that you are going to go spinning! I think I should add a more cardio focussed routine To my day to see if it helps alleviate the night swelling. Any other suggestions? Thank you all for the information and the openness you all have in sharing!
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Chloe my regular doctor told me how much Vitamin D to take and my onc told me how much Calcium to take. I highly recommend you discuss this with them so you don't take too much.
Did someone measure you for your compression garments? If you are suffering from LE (lymphedema) then you need to be measured properly. The wrong size can cause more problems. I don't know if you had any lymph nodes removed or if you had an MX but these procedures can cause LE. I do have minor LE on in my left arm. I have been measured for my compression garments.
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I have Herceptin #5 coming up this week. So far I have had:
- 1 & 2 - Fluid retention in legs, ankles and feet
- 3 - Very tired day of infusion, body aches, no more fluid retention
- 4 - Tired day of infusion, increased body aches/flu-like
I have noticed increasing joint pain in my knees, hips and shoulders. I had contributed the body aches to leftover SE's from taxotere but they are getting worse so I am starting to think it's from the Herceptin. I have also just finished rads so I am curious to see how I might react to my next tx. If the aches and pains are cummulative, I'm not looking forward to the months ahead!!
I had a MUGA at the beginning of my chemo (Oct) and a second one beginning herceptin (Jan) both were 65%. I just had a third and will find out whether there has been any change in my EF this week. I will also have my first bloodwork in 9wks so I am curious to see how I am recovering from chemo.
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I am seriously going to ask about stopping herceptin at my next infusion. I am so tired of the body aches and feel like I have a 90 year old body. I had herceptin weekly for the 1st 5 months now every 3 wks and my body aches worse on just herceptin than it did on TCH. I just feel like I can't do it 3 more months. Any suggestions?
Also how often has eveyone had their hearts checked? I had 1 muga before herc. and 1 muga in Dec. and thats it.
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Sue - I had an ECHO before chemo, one after and one a couple weeks ago. I asked them to slow the infusion to 90 minutes and take out the benzyl alcohol from the bacteriostatic water that they use to reconstitute the herceptin. The 90 min infusion length helped me compared to the 30 minute one. There are two big trials in Europe/England that are comparing 6m to 12m of herceptin, PHARE and PERSEPHONE so some docs must think 6 months is enough. They really don't know yet how long we need to do it.0
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Sue I had a MUGA prior to chemo that's it. Chemo started October 5th. Every time I see a doctor, nurse, NP or my onc they all ask if I have shortness of breath. My regular MD even asked if I had any when I lay down. I told him that if I can go for a fast paced one hour walk I probably don't have shortness of breath
Seems like my treatment center is the only place that doesn't test regularly. It might have something to do with my history too. No heart issues for my brother, sister, mom at 73 or me and dad has a pacemaker but never had an issue prior to age 70. He's 79 now.
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Hi IowaSue--sorry you are having so much pain! Most get MUGAs or ECHOs every 3 months, but each oncologist decides what's best for their patient.
Marjie--hope the aches and pains don't get too bad for you!
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Thank you Lago - I will check to see what is recommended for me and yes, I have been measured for a compression garment. They removed 17 lymph nodes on my right side - I had months of chemotherapy prior to my surgery to shrink my tumor and my pathologist report came back negative after my surgery - BIG HAPPY DANCE!!! I have only very slight swelling in my arm but the swelling in hands has not eased up but really only gets bad at night. I believe this is due to my herceptin treatments. Thank you to everyone who posts and for sharing - great information. I have also been seeing a lymph drainage specialist and it has been helping a lot. Has anyone else seen a lymph drainage specialist and what has been your experience?
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Ok then. My onc assures me that the aches and joint pain I am experiencing is from rads and it should start to disappear over the next few weeks before my next herceptin. She told me that if I am experiencing this discomfort from the herceptin, then it would be discontinued, which I don't really want so here's hoping she's right!
Only other thing is that my last MUGA showed only a 2% reduction in EF which is good, but also showed an enlarged left ventricle so now I am off to visit a cardiologist and have an ECHO. Anyone else experience this?
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Hello everyone- It has been almost 2 months since my last herceptin (last one March 5th). I feel pretty good. I still have stiffness and swelling in left elbow and wrist. I also have some body stiffness if I sit too long and get up. It was definitely the herceptin. I think they need to review the side effect as far as the percentages of how it effects women. I still cannot wear my rings. I can put them on in the morning and by the end of the day it takes tons of soap and lotion to get them off so I don't bother. I see my Onc on the 28th. Not sure how long it will take to be back at 100%. I can tell you that I feel like myself now. I am sooooo much happier that I am off herceptin.
Isis- You made the right choice. Quality of life is the most important. You will notice a change soon. As I posted before the 17 herceptin is a general prescription. That does not mean everyone can tolerate it.
Bon and iowasue- I feel you pain. Been there done that. I finished 14 of my herceptins and that was enough for me.
I have read all the postings and I know some of you have other meds with herceptin. For the most of us it is just herceptin. I went through my chemo and rads fine. So when all my troubles started I knew it was the steroid.
I went away for Easter and even got to go for a walk along the beach. I did not think I would get very far but I was surprised. My feet did not hurt and I was not in pain the next day. I have not been able to do that in over 5 months. Going out for a walk today!
As far as the muga scans I had one every 3 months. Hang in there everyone. This has been a long journey and I hope mine is coming to an end. I will keep in touch as I have found so much strength and knowledge on this site. Take care.
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Chloe I went to an MD who specializes in Physical Med/Rehab, Lymphedema. He then sent me to an LE PT. She did a lot of massage for drainage and taught me how to do some on my own. The LE is under control. My issue is I keep losing my range of motion every time they do something else to me.
I don't think I really needed to see the MD specialist but my PS sent me to him. I think I would have been fine just going to the LE PT. My LE is somewhere between a 0 & 1, very mild.
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I feel left out because I get Echos and not Muga scans and I don't know what the % mean! I will get Echo's every 3 months.
lago, I think I will ask about calcium and Vit D. I stopped all my vitamins with chemo and have not started any again. Figured I'd wait till after radiation, but its probably better to start sooner rather than later.
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readingmama - I am having Echo's, they are easy.0
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ReadingMama - I was told absolutely nothing during radiation and to wait until 2 weeks after your last session to start vitamins or supplements of any kind (I finished about a week and a half ago). Might be an idea to check with your RO first.
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I have considerable joint pain which is not getting better and may actually be getting worse with each herceptin. I am not having Rads or hormone therapy and havent had any chemo since Jan 24th. I'm convinced the joint pain herceptin. My hips, shoulders and hands are most affected but pretty much every joint in my body has some pain and stiffness. I finish herceptin in Nov and will stick it out as long as no of my major organs are affected
because I feel herceptin is so important but boy it hurts!! Very hard to sleep at night and I can barely get down the stairs in the morning and I'm only 45!
Christine0 -
Have 17 rounds of herceptin planned, first four was with taxol, am on number ten now. No problems at all, have been running and exercising with out pain. No more stiffness or soreness than before cancer! From what I am reading I am a strange one! I had bilateral mastectomy may 4, 2011, stage 3 with 2 of 11 lymph nodes taken effected. Eight rounds of chemo, twenty eight visits for radiation. I get a mug a scan every four herceptin visits.
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I just read something that said Herceptin side effects included pain (joint, muscle) in 47% of patients and weakness was a common side effect for 42%!!!
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Christine - I am the same...hips, shoulders and hands are the worst and yes - it's hard to sleep at night. The more I move though, the better it is. I don't know why my onc is so set against herceptin having any side effects like this?? I was kind of skeptical that it's the radiation.0
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Thanks marjie, I will ask the RO, I see him on Thursdays. It's kind of funny, when I made the consultation appointment with the RO, the nurse INSISTED several times that I bring ALL the actual bottles of meds, vitimans, etc. I was taking and not just a list. And then, at the meeing, no one looked at them at all, very annoying. Come to think of it, I haven't seen that nurse since I started.
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Definitely the stiffness improves with moving around. At night it is the worst because I'm not moving. Just rolling over can wake me up with the pain and then it all becomes a viscious circle lol. Having said that, I had a pretty good sleep last night. Hallelujah!
Christine0 -
I can honestly say that I have not had any SE that you all have discussed while on Herceptin. One exception being my poor hair is growing sooooo slowly. I did 6 tmts of Taxotere, Carboplatin, and Herceptin every three weeks with Herceptin on the "off" wks. After completing the "chemo cocktails" I went to (and am still on) Herceptin (triple dose) every 3 wks. Had an infusion last week and only have 5 "triples" left to go. I only started feeling blah, no energy, fatigue plus many more SEs when I started Arimadex. I have since been switched to Femara. The aromatase inhibitors can also cause "hair thinning".
I feel badly for the ones who are having difficulty with the Herceptin, but wanted everyone reading these posts that not everyone has these problems, everyone is made different. I am waiting my turn at the joint/bone pain & stiffness with the aromatase inhibitors along with the fact I already have osteoporosis !!!! Seems as though we all are caught between a rock & a hard place no
matter what we do.
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NormaJean - We are on the same herceptin schedule, I have 5 more to go as well. Do you have a port?0
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Hi everyone! I haven't been on in a few weeks, though I do read the posts. Like you, Norma Jean, I have had no SE's from the Herceptin alone. I did choose to do it weekly as opposed to the triple-dose every 3 weeks because of the SE's I had with TCH. I started Tamoxifen in February. Finished rads 2 weeks ago. I feel GREAT. I have some chronic foot pain and swelling, but I had some of that going on pre-chemo, so I really don't think it's related. I started back working out last week. Have gone to the gym every morning this week, and even swam laps in my pool last night. I honestly can't believe how good I feel! One thing that I have battled this whole ordeal, though, is low potassium. The standing question every week when they do bloodwork is "do we need to up the potassium?"
I am sorry for you ladies that are having SE's...and so very grateful for those of us who aren't. Soon, though, we will all be through this and somehow we will be better people for the experience. (I certainly DON'T want to do it again, though!!!!)
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Hi Betty - So glad to hear you are doing so well!!! Keep up the good work.0
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Thanks for all the kind words of support from you gals on this forum. Chelemybelle I'm glad to hear that you are feeling so much better after two months off Herceptin. Omaz, thanks for the hugs. For me it has only been days since I quit Herceptin and I don't know what to expect--if there will be any withdrawal symptoms so to speak. I feel relieved that I don't have to face the black near death type experiences anymore during the 21 day cycle. On the lighter side I am so happy for those of you who complete your targeted goal of 17 or 18 treatments. Truth be know, I feel like a lady-in-waiting. I don't quite know what to do with myself now so much of my time this past year has been spent lying in bed. One thing, for sure, I'll keep in touch and let you know how I'm doing.
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((((Hugs again)))) Isis - you are sounding better already!!!0
