Herceptin - Quick Side Effects Poll
Comments
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Eve, dance is correct, your onc is very aware. I have to set up my next mugs this week to check my EF. With all the trouble I have had, I am a bit apprehensive. We shall see. Much love.
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I'm a new contributor but have enjoyed this thread for a while now. It's been helpful knowing others are having similar side effects. I started with TCH x 4 then continued with herceptin every 3 wks. now about 1/2way through a year of treatments. with the first few herceptin (only) treatments I kept thinking I was getting colds with a terrible runny nose to the point where I'd find blood on my pillow. then I realized there was a pattern starting 4-5 days after infusion. my nose would run so much it would crack on the tip. I couldn't be without a tissue. I mentioned it to my onc after reading this thread and putting 2 and 2 together and she suggested I take a claritin every day. Well it works great for me, no more runny nose!!!!! if your having the same problem check with your dr, maybe it will work for you too. also having off and on fatigue and body aches, unfortunately haven't found a pill for that
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Hello all
Well a bit of good news. I go every 3rd Wednesday (which was today) to give bloods and if every thing is OK I get my treatment the folowing day Thursday, which will be tomorrow when I receive dose #23. Like most of you I get an ECG every 3 months. 2 ECGs ago my EF was down to 51%. Well this morning when I was at the clinic to give bloods I got the results of my last ECG and it showed that my EF was UP to 55%. Oncologist very upbeat about the result - but not half as upbeat as I was ! ! ! Just wanted to share some good news.
Take care.
Frank
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Good news Frank! Love to hear positive news, thanks for posting.
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Yay Frank - good news!!!0
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Doing a happy dance for Frank! Yay, good news.
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Last Monday I had my third herceptin infusion. Since, I am one of the few doing it without chemo, I want to post side effects for those who are interested in side effects without chemo or who never had chemo.
At rest, I can feel my heart beat especially when it is jumpy, which is most of the time. After work, I don't want to do anything but rest. I am fatigued. I have a off and on headache. I was a little light headed on Friday. The third infusion side effects weren't as severe as the first two. I am taking Coq10 for my heart plus other supplements.
After the fourth herceptin treatment, I will have another echo to check my ef and heart rhythm. The fourth one could be my last one if my ef goes below 50. I can't imagine what the side effects would had been like if I had chemo along with it.
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Hi Everyone! I found out yesterday I have to stop my herceptin for at least a month due to a falling EF. I had an echo a month ago which showed a 5% decrease and the one I had yesterday showed it was down to 48-50%. I'm not worried about the damage reversing itself - I've heard very good things about that - I just wonder if anyone had to stop it, started it again, and if you were able to eventually finish. I have completed 18 sessions so far with a total of 52 planned. The first 12 were given with Taxol but before that I had AC with no changes in my echo. I'm worried about what the stopping and restarting does to the efficacy of the herceptin and I also wonder if it will delay my exchange scheduled for May 2.
Also, as far as side effects, after I've been sitting a little bit or lying down, when I first get up, I feel like my legs don't want to move and feel like I'm 90 yrs old trying to get moving (I'm 42). After a few steps, it's better. I'm also waking up with hand pain.
Wishing everyone a great and symptom-free weekend!
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Anyone else have weakness in the legs? My left leg collasped under three times today and yesterday. I went to doc, he said looked ok, did xray and if not better, call Monday. Not better yet, makes it hard to get to bathroom, I still have the big D, decided to buy depends and am crying. Sometimes life sucks
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Thanks Omaz - I forgot about the thread so I will check it out.
Moonflwr - I have a lot of weakness in my legs and a feeling that they are going to give out. They have given out on my twice but only when I had really been overdoing things around the house. Are you taking any meds for the big D? I'm so sorry you're having a hard time! Sending you a huge but easy hug!!!!
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moon - Did you doctor check your blood?0
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Denny - your story is inspirational - I have another good friend on here whose liver mets have also been totally destroyed by herceptin. What a wonder drug!!!0
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omaz, I get blood work every week. Everything checks out, little low on potassium, they gave me pills. Ohhhhh give me a moment here, potassium is a bit low, cramps, etc. Perhaps, it will go away when I catch up on potassium? Here's hope!
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Another side effect I've noticed from herceptin is my eyes. I'm finding myself squinting more when I read, even with my reading glasses. My eyes were just starting to improve after being off herceptin for six weeks. Since I had a herceptin last Monday they are a little blurry and squint when reading. I'll have to take more vitamin A.
Tomorrow I have a mammogram for my left breast. I do not suspect anything, but hey, I didn't the last time I went in for one.
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Hi evebarry, I just came across your post. I've had 9 of my 18 Herceptins. I've noticed my eyesight has deteriorated and wondered whether it's a leftover side effect after Taxotere or side effect from Herceptin which was started at the same time. I can't find info on this anywhere so I'm very glad you've mentioned that your eyes improved after stopping Herceptin. Good luck with your mammogram too.
Has anyone else found Herceptin affects eyesight?
Apart from the eyes, I also feel the common cumulative effect of Herceptin fatigue and nose dripping like a leaking tap. I have stiff joints, sort of arthritic pains, but as I'm also on Letrozole, the Herceptin nurse said its a double whammy as both drugs cause stiff joints. I'll be able to tell more, as to the extent of joint pain with Herceptin, when it ends later this year.0 -
Hi Just read the posts regarding herceptin affecting vision...I spent nine hours in the er yesturday for a ocular migraine! I had herceptin for a year and yes I think this had something to do with it. I will see the specialist this week, scarey stuff!
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starella...I have a slight headache in my eyes as well. I thought the herceptin gave me a sinus headache. Before herceptin it was a rare I ever got a headache.
Got to get ready to go for the mammo.
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I had ocular migraines years ago, but definitely have had more recently, now I know why!
After 15 months of treatment, I have my final Herceptin treatment in 36 hours, but who's counting???
Has anyone experienced swelling hands/feet with the warmer weather? I feel like I did when I was 9 mos pregnant, i.e. hands and feet are like sausages. Is it the Herceptin? If so, how long before it goes away after my last treatment?
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Thank you for sharing your experiences of Herceptin. I just finished 6 rounds of TCH and now continue till December on Herceptin every 3 weeks. I was wondering about the side effects of Herceptin. I am an allergy sufferer and have already had 2 sinus surgeries, so, I am concerned about the runny nose and sinus infection side effects! Did you notice a smell while on Herceptin or TCH? My husband says he has noticed an odor, but I haven't. I struggle with all these side effects.
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After all my chemo--I had 12 months of H weekly,I felt achy all the time - but that was after 16 months of chemo weekly so who knows what did what I'm sorry I got distracted here, but I did want to say I have had sinus infections alot and I've never had a sinus infection in my life with tese headaches too. ??? who knows what causes what all different chemos, herceptin, rads, and now aromison--It's hard to tell the difference I'm sorry.
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Hmm.....my daughter said she noticed a order as well...I didn't. She said it smelled like a plastic type chemical ???
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hi ladies I have a question ..I finished Chemo on October and after that I'm in Herceptin every 3 weeks, my last one will be June 7 ( yeahh).Since the last 2 I have been very tired specially the day of my infusion and now I'm having a lot of pain in my ankles
, today I could barely walk.Someone with the same side effects? 0 -
All of my joints hurt. Happy to say 2 months after I finished Herceptin the aches are going away.
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I haven't posted in awhile. I had my bilateral mastectomy 13 days ago. No reconstruction. I am still upset about this weight gain issue and would love knowing how to regulate it and keep it at a minimum so that I don't have so much to lose later. I also have the watery, hard to focus eyes...I believe it is both because of the herceptin as well as the fact that I don't have enough eyelashes left after chemo. I am on herceptin through November and started the tamoxifen two days ago. Worried this will only keep the weight issue an issue. Good news however, to you all just starting...you will feel better after your TCH treatments stop. The herceptin does not beat you up the way the other did. Promise. And, if you are looking at mastectomy, it really is not as bad as I anticipated. The pain really is not bad at all. I was worried about the emotional effects, but so far...I am feeling okay. I feel a little naked sometimes but mostly I feel thrilled to be alive! :-)
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I had herceptin for 9 weeks last fall. My doctor told me there were no side effects. However, my nails have been weak, thin and won't grow at all. Thank you to all of you who said you had the same side effect. Biotin is a possible remedy for weak nails, but you have to take 3,000 mcg daily or the supplement "Healthy Hair Skin &Nails," if you can tolerate 3200 mcg of biotin in one dose. I couldn't so I take 1000 mcg three times a day. It does take awhile for you nails to begin to grow after starting biotin.
For those of you still in chemo or who have had it, a great book is: The Cancer-Fighting Kitchen by Rebecca Katz. She has great recipes for people who are sick and no apetitie and great foods for recovery. Another great book is: Waking the Warrior Goddess by Dr. Christine Horner. She developed "Protective Breast Formula" supplements which I now take daily. Also check out Paul Stamets and turkey tail mushrooms (extract from Fungi Perfecti at Hostdefense.com). I take the mushroom extract also daily and will take for the rest of my life as well as "Protective Breast Formula" supplements. Lastly, another good book is: The Whole-Food Guide for Breast Cancer Survivors. I have really learned over the last year that there are a great number of ways to prevent recurrence than drugs. And of course positive thinking is the BEST way! I don't go on this web site very often now that I am okay so if you want to contact me email me, Pat, at -----. And hang in there! Pat
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(Edited by Mods to remove member's personal email address. We strongly recommend sharing personal information only by private message, and only with those you know and trust.)
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Wondering if there is anyone who has experienced continuous eye watering? I am an allergy sufferer, could not get my weekly allergy injections while taking TCH but am resuming them now that I am only doing Herceptin. Can't decide if this is allergy related or from chemo. Any suggestions?
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Hi from Wpg Canada, I ham on Fermera and Herceptin *indifinitely), try Glucosimine and Chondroitin for the stiffness it worked great for me. Thanks for sharing about the eyesite, because I just had an eyetest last year and the Dr said it was fine and I find I too am squinting to see. THANKS FOR EVERYONE sharing it sure if helpfu.
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My daughter says that the Herceptin gives off a chemical smell. I haven't noticed it. Anyone else have someone complain that you smell different?
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I had horrible joint stiffness on herceptin only. Was also very low in vitamin d. I still have 3 herceptins to go, but haven't had the joint stiffness since I got my vitamin d normal. I'd get that checked if you haven't.
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