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

[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

[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

[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

[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