Anyone else feel HORRIBLE on Herceptin?

MGordon · 02-22-2007, 02:20 AM

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 · 02-22-2007, 07:14 AM

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 · 02-22-2007, 09:43 AM

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 · 02-22-2007, 10:15 AM

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 · 02-22-2007, 10:20 AM

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 · 02-22-2007, 12:41 PM

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 · 02-22-2007, 12:42 PM

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 · 02-23-2007, 06:12 AM

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 · 02-23-2007, 11:25 AM

Kelly,
Did you try these two changes which have helped some

ecadron 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.