Weekly hercetpin & benedryl?

Chelee · 05-06-2006, 12:40 AM

I get one full cycle of herceptin, Taxotere & Carbpotin followed by weekly herceptin. When I first started all my chemo's the doctor gave me pre-meds even with my weekly herceptin. The FIRST time he decided NOT to give me benadryl with a weekly infusion of my herceptin...I got sick. Felt nauseaed...weak in the knees...and tired. But that is the SAME week I found out my wbc was 116.

I ended up in the hospital after that one week with NO benadryl? So since then I have asked to HAVE it with my weekly infuison of herceptin. When I have it...I never feel nauseated or weak.

My infusion nurse was gone on vacation this last time and the nurse filling in for her did NOT give me benedryl. I didn't feel good again this time without the benedryl. (the nurse said it should make NO difference with just the herceptin.) Maybe she is right...I just think its strange that the only two times I have done without it...I had problems?

Well since this...I mentioned it to my oncologist. She said I could have it...but this time I could just have it in oral form verse's IV. (I guess that shouldn't make any difference...but I have never seen anyone else get it that way?) Triva...

But have any of you had problems with herceptin infusion and no benerdryl? Just curious...I know we are all so different. Thanks.

Chelee

Maggie · 05-06-2006, 04:37 AM

Hi Chelee,

I started Herceptin in November when it was approved for early stage BC..
I was given 2 Tylenol and Benadrly before Herceptin. I believe that was the protocol for starting. After falling asleep two times in a row with my mouth hanging open, (not a pretty sight) I asked if it was nessasary to take it and they stoped them one at a time. I never had a problem not taking Benadryl and Tylenol. Perhaps there is a smaller dose, or you can half the pill and try to taper off it. It made me tired for the rest of the entire day, too.
Maggie

lu ann · 05-06-2006, 09:51 PM

If you are getting your herceptin weekly why don't you ask to have your taxotere and carboplain weekly. I had taxol, carboplatin and herceptin 3 weeks on/1 week off. My side effects were lessened because I was given smaller doses of chemo. My tumor markers all came within the normal range with this treatment.

Love and Blessings, Lu Ann.

Chelee · 05-06-2006, 10:45 PM

This is a TEST post. I have LOGGED IN several times....replied to you guys on this topic...and also on other subjects. Then later I come back to find there are NO posts from me? Where are they going?

It has my name above where the log-in shows. It says "Welcome Chelee"...so where are my REPLIES going. I am so bummed. Lets see if this makes it.

Chelee

kat in the delta · 05-06-2006, 11:13 PM

I ALWAYS TAKE 2 Tylenols and the nurse gives me Benadryl IV before Herceptin. kat

Chelee · 05-07-2006, 02:05 AM

Ok...finally I see one of my replies posted. I wonder why the others didn't?
Maggie, I re-read my post...I am NOT very good at getting to what I really want to know. (Chemo brain I believe it is these days.) lol Like you, I use to get the two tylenol and benadryl each time. But what I was trying to say and did a bad job is....the FIRST time my doctor told the infusion nurse NOT to give me the benadryl...I landed in the hospital. Not that same day...but I was a bit nauseaed...and felt weak. Then as the next few days went on...I kept calling him daily to tell him I was having a hard time breathing. That went on four days till I was IN the hospital on oxygen and predisone.

Well...I recovered...the when I got back on schedule for my chemo and weekly hercetpin...all was fine UNTIL this last time. My regular infusion nurse was gone...so the one filling in for her decided NOT to give me the tylenol or benadryl and again...I had a problem? Now this nurse said MOST people do fine without the benadryl with the weekly herceptin. (But we all know were so different.) Maybe its a coinidence...but it just seemed funny that the ONLY two times I did NOT have the benadryl..I had a problem with the herceptin.

This last time did not land me in the hospital thank goodness. But my chest felt tight..and my right lung was bothering me. Seemed harder to breath. (So of course in my mind I think its because I had no benadrly since the only times I have a problem is when they don't give it to me?)

Myself as you said Maggie....it makes me tired and I fall asleep. So if I wasn't worried about a reaction...I just assume NOT take the benadryl at all...especially for the weekly herceptin. But two times without the benadryl...makes me wonder if I don't have reactions because I did NOT have it? (Maybe its just a freak thing?) I know MOST don't have benadryly after their first few times.

Hi Lu Ann, My oncologist doesn't want to give me the weekly chemo as you mentioned...although it seems it would be just as easy since I go there weekly anyway. I know my side affects especially after the first week of my full cycle chemo is rough. The second week it gets much better though. I don't know about them giving me a lesser amount...I am already quite concerned about what they are giving me now. I have no idea if any of its working yet or not? No one has told me a thing. (Its like pulling teeth for me to find out anything it seems.) I asked about my tumor makers since NO one has ever mentioned it to me. My new oncologist says she doesn't believe in those tests and they are un-reliable. ARGH. I told her someone better do something sometime soon to let me know if anything I am doing is working! I am getting tired of being put off. I have had two different oncologist and they both tell me different things. I don't know WHO to believe at this point...or if I can believe either. I WILL be getting to the bottom of it this week rather they know it or not. I have my request forms for my own medical records. I will READ what they have been saying about me...and get to see all results from prior PET/CT scans, x-rays, cultures, MRI's and you name it.

Hi Kat, I rather GET my tylenol and benadryly just like YOU are each time. Especially since I have had problems TWICE now when I did without. In fact..yout mentioned the tylenol. Two weeks ago was the first time they did not give me tylenol before my 30 minute infusion of hercetpin. Which I wasn't concerned about that at all. I stood up to leave and WHAM...instant headache SHOT up from the lower back part of my neck to my head on the left side. One of the worse headaches I have had...and it was FAST! Even the nurses looked at me and asked what was wrong? They made me sit down. It did pass...and I was fine...but I don't think these oncologist can LUMP us all in the same boat as far as what side affects each person will have with...or without a certain pre-med. I know my own body...and I find it funny that the only two times without benadryl I DID have problems.

But it looks like the majority do fine without on their weekly doses. But now as I mentioned...since I told them I think I really SHOULD have the benadryl...now they have choosen to have me DRINK it verse's IV. They say there is NO difference. I know better then that...IV is INSTANT. Orally is much slower...that goes without saying. I wonder why they want me to just drink it now? I don't see anyone else that does benadryl having to drink it? I want my lungs and body protected rather they like it or not.

Thanks to all of you who replied. Much appreciated

jhandley · 05-07-2006, 05:18 AM

Hi

I am now on 3 weekly herceptin and have nausea for a few days (mild). I hae no pre-meds.
Jackie

tricia keegan · 05-07-2006, 12:50 PM

Chelee when I was on weekly herceptin I always got the pre med and now that I'm on 3 weekly he still insists I have it even though I've learned here a lot of people do fine without.It does make me very tired but I think I'd be scared now to try herceptin without it.
Tricia

Chelee · 05-07-2006, 03:22 PM

Hi Jackie, See...now I find that interesting that you have *mild* nausea after your weekly herceptin with NO pre-meds. That was one of my complaints to my first oncologist after herceptin the first time with NO pre-meds. I felt a bit nauseated to my stomach...and a bit weak in the knees. When I have the pre-meds...I DON'T have this problem.

That's what I mean with all these doctors...they HAVE to know "one size does NOT fit all.". That should go without saying. I hate how tired the benadryl makes me...but its worth it to prevent all side affects. (I have enought side affects after my full cycle chemo...I don't need any extra's.)

Tricia, I like your doctor. He sticks with what he knows works for you. My thinking is if you aren't having any problems...and things are going ok...leave it alone. Thats what gets me with my oncologist...seems obvious NOW that two times WITHOUT premeds and I had problems. With pre-meds...I have none. (Pretty simple.) At least I see some of you are still getting the pre-meds for weekly herceptin. I am sticking to my guns on this one. Tomorrow, (Monday) is my weekly herceptin day. They THINK I am going to drink the benadryl. I am putting my foot down...they will give it to me in a IV like they always have and I know it works that way.

Thanks to all of you...

Chelee

marymary · 05-07-2006, 03:40 PM

Did you state the problem occurs when you receive only Herceptin? Or is it worse with Herceptin + Taxotere? The reason I ask is because allergic reactions to Taxotere are so common. If you are affected, it may well be difficult to breathe. Supposedly this only happens once, with the loading dose, but I am here to tell you I had this reaction each and every time they tried to infuse me with Taxotere (3 times). Finally, it became necessary to give me i.v. decadron before the Taxotere.

Also Benadryl is not a prescription drug so you can always take yourself it if it makes you feel better.

Just some thoughts.

Mary

MCS · 05-07-2006, 09:23 PM

Firts time I had hercepting, I as given tylenol and bendryl by nurse. I don't get them any more.

However, I take a benadryl at home before the infusion. I have not major reactions. I have not told the nurse, maybe I should?
XOXO MCS ( maria)

lexigirl · 05-08-2006, 10:14 AM

Chelee,

I get to tylenol and one benadryl orally before my infusion. For now I am having the herceptin every three weeks as long as my heart will allow. I have Kaiser.

Love,
Lexi

cherylynnie · 05-08-2006, 12:24 PM

Chelee,
Hypersensitivity is a reaction from the Herceptin, which would explain the breathing problem. It probably put you in the hospital because your white count was so low and your body can only handle so much.
Mary is right about the Taxotere, they gave me both benedryl and decadron in the iv before they administed the taxotere.

Chelee · 05-08-2006, 12:54 PM

Hi Cherylynnie, Me & my husband agree with you. We truly believe due to my wbc being so LOW that one time (116)....and me being sensitive to herceptin anyway...is what landed me in the hospital. My body had nothinig to fight back with. I was in a very dangerous zone with my wbc at 116.

When I get Taxotere..they NEVER have a problem giving me ALL pre-meds. They take no chances with the taxotere. As you mentioned...I do get the Decadron, tagament, and benadrly.

Chelee