Anyone else feel HORRIBLE on Herceptin?

[KellyA]

I am so frustrated. I get my 20th weekly Herceptin tomorrow and am miserable. I ache and hurt everywhere, am nauseous, have diarrhea. I can honestly say that I feel worse than I did on Taxol. We have tried everything. We've tried mixing it with saline, tried the 3 week dose (that was the worst), tried the weekly dose (so far the best, but that's not saying much). I certainly would never stop taking it- probably not even if it was making my leg rot off, because it could very well be what saves my life. I remind myself how lucky I am to be getting it and try to be positive, but I really am just miserable and can't imagine another 32 weeks of it. To make things worse, when I hurt my mind wanders and I am really fighting some kind of depression/paranoia issues. Hard to be happy and optimistic when I am hurting. Does anyone else have this much trouble with Herceptin? I feel like some oddball case......

Kelly

[Sandy H]

Kelly, sorry to hear you are feeling so miserably. Have you tried drinking lots of water? Also eating small snacks. If I do not drink lots of water and eat healthy snacks I feel awful. I have had my husband stop at the store when we have been out riding for the day and get a snack bar, yogurt, or even a milk shake. I try to stay away from junk food such as chips, candy, sweets. If I don't drink water continuously all day I feel weak and just plain sick. It is amazing how fast that feeling goes away once I start drinking or eat a snack. I even get up in the night and drink water several times if I remember I will put a large glass of water by my bed. I think it has to do with the blood sugar dropping similiar to diabetics. Perhaps, this is something you can experiment with. Hope this helps. hugs, Sandy

[Jean]

Kelly,
I am sorry that you are suffering so....
We all react so differently to these drugs. Maybe the day prior to treatment you can take some alieve for the body aches and of course the drinking of
water is very important. Maybe even eating lighter foods. The day of
herceptin treatment I choose to eat lighter this may help the nausea.

It is hard to pin point but maybe try different methods starting a day
or two prior to prepare your body. It sounds like you are more sensative
esp. in regards to your digestive system, maybe some organic brown
rice day of treatment with steamed veggies.

I have been experiencing strong itchy sensations which are very uncomfortable and I feel like I could scratch my skin off.

Hang in - there is light at the end of the tunnel.

Kind Regards,
Jean

[Sherryg683]

Oh yes, yes and triple yes. I have been on Herceptin for 15 months now..11 of these months by itself. I suffered terribly from the Herceptin headaches for at least 8 of those months. Also felt very tired and worn out the day of infusion. I have mine weekly. I have to say though that for the past 2 months I haven't had near the reaction to it that I usually have. I have actually had it done and gone shopping and out to eat the same night and gone about things as normal. Maybe my body is just adjusting to the bad things. Now if I can just get rid of this dang shingle pain, I might actually feel good...sherryg683

[Sherryg683]

One other suggestion, have you tried benedryl given through your IV before they do your Herceptin, in case you are having an elergic reaction to it. I had it done, it didn't help me one bit...just knocked me on my butt for the rest of the day but it was something they suggested me trying..sherryg683

[lexigirl]

Hey Kelly,

I am sorry that you are having a tough time with the herceptin. Do they give you tylenol before the infusion? That may only help with the fever se, but may also help for other aches and pains. I hate for you to have to go through such misery for another 32 weeks. Perhaps your onc can come up with something that will help with your pain.

Hugs,
Lexi

[Bev]

Hi there, I used loperamide hydrochloride, generic for something, every other day or so, for diarrhea. For me, that was the nastiest side effect. It's persisting but not as bad 3 months after finishing.

I had no aches or pains. If you're truly miserable. 5 months may be enough. Good luck. BB

[tousled1]

Kelly,

You are not alone! I too feel absolutely terrible on Herceptin. I've tried the every week and every three weeks, reconstitution with saline water (makes it a little more bearable), headaches constantly, and just an overall feeling of not feeling good. I have a PET/CT scan scheduled for Friday morning and when I go to the oncologist on March 1 for my next treatment I should get the results of my last HER2 serum test. I have been thinking very hard on this issue and have decided that if my PET/CT is clear and my HER2 serum level is down I might just stop the Herceptin. I only have until June to go but I'm feeling worse with each treatment. All I want is to feel "normal." I have no idea anymore what "normal" is but I know it's not how I'm feeling now. I have tried taking benedryl and tylenol right before the infusion and that doesn't help. Another reason I'm considering stopping the Herceptin if everything is ok is that my last echocardiogram showed atrial enlargement. I was informed that's from the Herceptin and it will be permanent. I don't want to beat this disease to then die of heart problems. My heart has me very concerned. Sorry for rambling but sometimes it helps to put things in writing.

[KellyA]

Thank you all so much for your replies. Everyone here is just wonderful and so encouraging. I feel a little ingrateful complaining about a drug that is so wonderful and has helped so many people, and try to keep telling myself that "this too will pass" as all of the other yucky parts of treatment have- that philosophy doesn't seem to be working lately!

I do get benadryl before each dose and take tylenol- that might be why I don't feel badly until about 48 hours after. It is like clockwork. I get Herceptin on Thursdays, and by Saturday the aches and pains start ( I feel like I have a really bad case of the flu coming) and the nausea starts. I have the diarrhea all the time (funny u would think that I might have lost a little weight- of course not the case!)

I am hoping that things might improve over time or that i will find a solution- September is a long time away. I will definitely try to make sure that I am drinking enough water and will try to eat a little differently. Thank you again for all of your help. I JUST LOVE EVERYONE HERE. Can I bring you all along on my next visit to my onc?!?!

Love, Kelly

[sassy]

Kelly,

Sorry you are having tough times with the herceptin. I remember one night just crying and telling my husband, I was just tired of hurting. Not sure if this will help, but sometimes Ativan seemed to help me. My worst days were always 48 hours after treatment too, but the farther into treatment--it did seem to get easier.

Hope things get better.
________
AdriannaMarie cam (http://camslivesexy.com/cam/AdriannaMarie)

[MGordon]

Lisa had her treatments every Thursday (herceptin + something for over three years). We used to joke about her lost days... She'd be "knocked out" the rest of Thursday (usually due to Benadrylt/Tylenol) then she'd feel good on Friday and overdo it (please DO NOT overdo it - just rest and heal) and then we'd "lose her" on Saturday and/or Sunday - a day spent 100% in bed. At first it was a miserable day - but over time - she'd "feel" better. Eventually we realized it was just a day of rest. To be honest I really got used to "resting" with her on weekends - but Sundays are football/NASCAR days so I'd always get up first! Tell hubby to snuggle up!

Remember - REST IS HEALING and never fell like your getting too much rest. This hurdle will pass - promise.

Love and Light
Mel

[Sheila]

KelleyAfter being on Herceptin 3 1/2 years, I can tell you that fluids are so important....I have never been a water drinker but on Herceptin, especially the day of treatment and a few days off, I drink like a sailor...water that is...it seems to help dissipate the effects....hope this helps!

[suzan w]

I had terrible joint and muscle pain while on herceptin...drinking water does help. If it is any consolation...I am 4 months out from my last treatment and the aches and pains are becoming a thing of the past! Hang in there!!!

[Barbara2]

Kelly, Do you suppose you could skip a week and see how you feel during that off week? Herceptin stays in your system for a while, (not sure how long...it seems like a couple of months maybe) so perhaps a week off wouldn't hurt anything and you could get a bit of a break.

I took "late" herceptin with odds and ends of side effects, but nausia was not one of them. There was a little bit of diarrhea at first, but my body adjusted to "normal" stools...I've always had constipation issues, so the herceptin seemed to even that out a little.

I've had aches and discomfort here and there all over my body since beginning chemo, (especially in the ribs) so it's hard to know what caused what. I empathize with you and your wandering mind. So does mine, all the time.

I do feel it's a good idea to take Co Q10 while taking herceptin which gives the heart a boost. I even continued with it after finishing herceptin.

Hope you get to feeling better.

[rinaina]

Hi Kelly, I too do not feel as good as I use to since starting Herceptin, but I will say, I feel much better than I did while going through chemo. I have had headaches, aches and pains, nausea, diahrrea, skin cracking and nail problems. I also still struggle with fatigue. I just can't keep going like I use to. To me it feels like it has gotten worse with each treatment. I have been getting Herceptin since late August every 3 weeks. I just tell myself, it will all be worth it if it keeps the cancer from recurring or metastasizing. Hang in there Kelly, you are not alone in how you are feeling. Ask the doctor what else he might recommend for each and every side effect you have and use the recommendations.

[Angela]

They give me steroids the day before treatment, during treatment and the day after treatment. It really has helped me but I hate the weight gain from them. I am going to try herceptin tomorrow without bendryl because the bendryl has started making me so hyper that I can't even sit still in the chair after they give it too me.

Hope you are feeling better soon.

[Mary Jo]

Hi Kelly,

So sorry to hear that you are feeling so poorly on the herceptin. And you surely aren't complaining - just stating facts (as I always say to my husband) :-) It's no fun when we feel lousy and after being given a cancer diagnosis I think we scare easily also. Always looking at this or that and why this and why that or what if this or what if that. It truly can be depressing and frustrating many times.

Like another one of the "posters" here said I, too, have had more aches and pains that I've ever had in my life since chemo and herceptin. And, like her I suffer much over in the left rib/side area. No rhyme or reason to it and everytime I think it's gone or at least considerably better - whamo - it is back. I had a Pet/Ct scan the end of December and nothing showed up over their. So, I'm thinking it's all effects/damage from chemo/herceptin.

Keep your chin up and here's a HUGE CYBER HUG from me to you.

God Bless you with Peace,

Mary Jo

[Kimberly Lewis]

hi Kelly, I didn't feel as bad as you at all but... I can relate to feeling lousy. My reaction to Taxol was so bad I decided it wasn't worth it to me. Didn't you say that your Onc was open to giving you Tykerb? Maybe it would be a good alternative therapy - just a thought. I ache now AFTER the herceptin therapy is over and all I can point to is the Femara. But it really isn't bad enough to stop treatment. I just wonder what it is attributable to... is it a delayed response or who knows really? We have so much going on! Feeling good is important to life - especially for a young mom like yourself. Don't settle if there is another path you can take.

[heblaj01]

Kelly,
Did you try these two changes which have helped some :Decadron instead of Benedryl as a premed & doubling (if not more) the infusion time?
In extreme cases where patients were requiring emergency treatment upon accute immediate reaction to Herceptin, oncs prescribed up to 8 hours long IV's to overcome the problem.

[rinaina]

I just had another herceptin treatment yesterday at 1pm and by last night at 6pm my body ached terribly especially my knees. I thought benedryl was only added to first treatment in case of a reaction but after that they didn't add it. All I know is I didn't feel well last night but today I am better, not as achy. I will take tylenol from now on before treatment.

[atdec05]

I noticed after a couple of months of herceptin I started getting joint pain in my feet, knees, and lower back. I took Glucosamine and that seemed to help, but I had to take it for several weeks to experience any effect.

My last treatment was Jan. 31, and my pain is greatly diminished.

I only took benedryl the first treatment; after that I took 2 extra-strength Tylenol before each treatment.

= Anna

[panicked911]

Hi Kelly :
THERE IS HOPE!!

I finished my year of herceptain on Nov. 1 (triple dose) and by mid December i noticed a marked improvement - the achs and pains that had plagued me to the point of feeling like I was 8 in a 45 year old body eased. By january I could bend my fingers and legs w/o pain! a little stiffness but no esl pain - the brain fog has also started to subside. I am in arimidex and luro as well and the oncs kept telling me it wa those drugs ot the hercpetain. I always felt they were wrong b/c when i went to triple dose 1/2 way thru the symptoms got worse. When I went back to my O cologist in January she was amazed at the improvement - she is head of all breat cancer trials at a major NY cancer center and said she has not sen anything quite like it -
Moral of this story is that it can get better - hang in there and once off, there is a half life ....
I actully felt well enought his week to go skiing ! YEA

Susanne

[Catherine]

Kelly, so sorry you are feeling rotten. I have only had 3 rounds of Herceptin. Mine is every 3 weeks til the end of Dec 2007. So far just a few minor complaints. After reading those that posted to your comments, I may be getting the same crummie side effects in a few months. Thank goodness for this site.

I sure hope that some of the suggestions posted will help you. I have no advice, just wanted you to know I am still out here. So far so good for me, lucky.lucky. Have been away on vacation so have not posted for two weeks.

All the best, I hope you and your doctor can figure out a way to get you some relief. You deserve it.

Catherine

[astrid]

I had not been having a bad time until my December treatment. I have been on Herceptin since June of 2006. In December, I started to feel really bad about 2 hours after the treatment and then I had fevers up to 102 and then down all that night and really bad diarrhea and body aches all night and the next day. I take Hercptin every three weeks because I have an hours drive to the hospital, but my doctor switched my infusion to be delivered to an hour again instead of 30 minutes and I had not had a violent reaction. I had my infusion last Tuesday and I felt great afterwards but yesterday ( a week later) I went to the gym and went to a spinning class and had to quit I was so out of breath. I have been going to the gym for a year now, but have not been doing really heavy cardio for a while. Do you think its Herceptin or something worse or ???

[Grace]

I've generally done well on herceptin (if I discount the blurry vision, runny nose, cough, swollen ankles, and diarrhea, none of which bother me much physically although I do worry about the cough and swelling in feet with respect to heart. However, I just reached six months on herceptin, with my infusion on Tuesday. My husband remarked right before that my cough had improved a lot, and here it is back again, very strong. Also, I've had trouble breathing normally yesterday and today, and I'm completely without energy. I need to vacuum desperately and just can't seem to get the energy to do so. Has anyone else found that it gets worse as you go along?

[gin-tx]

Dear Kelly,

I am so sorry you are having such problems from Herceptin. I have been on H since June 2006, not so much pain as fatigue, lack of energy, etc. I just figured that was to be expected. Have had other problems from the Aredia I'm also being given in the port to strengthen the bones. And they have to be given separately. Does your onc give you something before treatment. I get a Benadryl and 2 tylenol to prevent chills, nausea. I do have some aches and pains but had that before I started treatment.

Keep me informed of your progress. How long have you been on treatment?

hugs,

ginkott1@aol.com

[panicked911]

HANG IN THERE IT DOES GET BETTER!!
I am living proof - a year ago i was miserable! Herceptain was wreaking havok with my body - i could not bend at the knes, my fingers were stiff as a baord and i ached all over and swore i was ADD.
a 45 year old trapped in an 80 year old body!

To get thru the last six moths of herceptain, I started intense stretching exercising like pilates , went to physical therapy and started taking glucosime and condtoitin. All of this did not "cure" the herceptain side effects but it certainly took the edge off.

I ended my 1 year of herceptain on Nov. 1 - it ws a triple dose - sitting in the chemo place weekly was worse than the side effects- so i opted for the triple dose- by mid december i noticed a real difference in how I was feeling. My strength started comig back - the jounts ached less - I could eve do a squat and hold hand weights!
I even skiied for the first time in 2 years last week and it felt good.
I still have some residual muscle aches and stiffness and my immune system has not bounced ack the ay i I jad hoped. i have hd my second cold, sore throat sinus infectio in three months. Bit clearly there is marked improvement. I attribute the remaiing aches pai stiffness to the lupron shots and the arimidex i am on. Small price to pay if it can hold a roccurance at bay!

Hope thishelps - but please hang in there - it does get better.

Susanne

[Tricia]

I hade my third chemo carboplatin/herceptin/taxotere today and this exact regimen put me in the hospital last week ago or so. So I was very nervous about taking it again. But I took everything they said to take,,,, you know decadron, benedryl, anazamet, zofran etc. The Doctor told me that he was so excited the results of the tumors... they couldnt be felt by me nor the Dr's so what he is going to go is have my surgery moved to the 3-4 week of april and then start the rest of the year of Herceptin and then use tomaxifan for 5 years.... on our first meeting he gave me 50% 50% chance and now he says an easy 80-90% so Me and my husband is very excicted PRAISE OUR LORD JESUS!!!!! GIVE HIM THE GLORY < THE POWER THE HONOUR...... WE DO HAVE AN AWESOME GOD!!!!


Thank you lord for helping to bring some understand and some hope that this is much more about me than the cancer that is inside me I think all my friend and family who have supported me through this.... mainly my wonderful husband who without I will crumble to the flower. Thank you to you ladies always willing to share their ideas, their pains, what they had learned... YOU ARE THE WOMAN WHO MAKE THESE BOARDS LOVE YA ALL AND GOD BLESS TO YOU ALL