benadryl and herceptin 3 week protocol

[Diane H]

Hello, have a question for the ladies doing herceptin on the three week schedule. I am currently doing every week and want to switch to the 3 week. Am being told with the larger dose of herceptin will need to take a large dose of benadryl, is this your experience also? As I will not be able to drive on such a large dose of benadryl it causes problems for me getting there and back. Thanks for any input -

[Barbara H.]

Hi,
I receive herceptin every three weeks and have never had Benadryl with it. After my loading dose I had a fever and felt like I had the flu for the day, but was better the next day. I've been fine. Sometimes I go in early and have it and then teach a full day of third graders.
I would request not to have it.
Best,
Barbara H.

[LindaBL]

Diane:

I get a 25mg dose of Benadryl with my every three week herceptin. I have had three treatments and still get the flu like symptoms. When I asked if I would continue to get benadryl, I was told "yes" because I am still having side effects. If I requested not to have the benadryl, I think my oncologist would listen to me. I don't seem to have any reaction to benadryl.

The benadryl does not really cause me to be drowsy. I drive myself home with no problem. My herceptin is done at a satellite location, so I don't have a long drive into the city. On the three week schedule, your infusion will last 90 minutes, instead of 30 minutes. Everyone reacts differently to benadryl--I wish I could sleep through the whole infusion as I watch others doing...

LindaBL

[*_sally_*]

I receive Herceptin every three weeks with 2 tylenol. I have been doing it this way for about a year and a half. I think I did get benadryl the first time. Sally

[Barbara H.]

Hi again,
As I said before, I am on a three week schedule, but my infusion still only takes a half hour. It is just given at a faster rate.
Best,
Barbara H.

[Rhonda4]

I just had my 2nd 3 week dose of Herceptin. The first one I had Benadryl and 2 tylenol, but yesterday my nurse said that that was only for the loading dose and that I wouldn't get it any longer. I am experiencing dizziness (my onc say all my blood work looks good, but my blood pressure was 106/40 and this may be causing it) also, I get a rash under my affected breast. My nurse said we would see how it goes this time, but she has a 2 week dosing we could try rather than go all the way down to every week.

[vpfeiffer]

My understanding is similar to some others -- benedryl is used in the beginning, but can be dropped after awhile, once the risk of a reaction is passed. I can't remember how many weeks I got the benedryl, but I think the last couple months I didn't get any. I am now on preventative Herceptin and I get only Herceptin--no benedryl.

My oncologist doesn't give Herceptin every three weeks because of the increased cardiac toxicity risks, but it sounds like there are a lot of docs out there who disagree. I am sensing that lots of you are getting it every three weeks.

Val

[*_Vicki_*]

I get a weekly dose of Herceptin, and I get two tylenol and one benedryl with it. I have never had any reactions at all. I thought I would with the loading dose but I was just fine with it.

[Gina]

Please, please don't take the benadryl. Just insist on no pre-meds. If you have been taking the Herceptin all along, you are not allergic to it. See my more detailed post about how it was actually an oncologist who added the Benadryl to the herceptin after-the-fact. It was never meant to be taken after the first loading infusion. Because of the way Herceptin may work, dampening the immune system may not be the best way to get the most bang for your Herceptin buck...especially considering that drip is costing you or your insurance company probably close to $3,000 to $7,000 a bag..sigh... Just my two cents, but taking Benadryl with Herceptin is like pouring a wet blanket on the charcoal at the same time you are trying to light the grill. I have taken herceptin alone many ways without premeds for years now only to reap many positive benefits--not the least of which is the capacity to take myself back and forth to treatments--though I usually walk rather than drive and am so lucky to live only 2 miles from the onc's office-yes, that is sheer GOOD FORTUNE that is..smile. Of course, it is up to you. For some of my more colorful her-2 friends...I even suggest spitting the Benadryl out in the onc's face, if no amount of reasoning works on the onc...sounds like you might have one like that...tease....also, you can quietly spit it AND THE TYLENOL out in the restroom...smile...if you don't want to "make waves" smile. Good luck to you...I think you will really enjoy the freedom the 3-week dosing can provide and by NOT taking the Benadryl, you will even be awake to enjoy it!!! Same goes for Ativan (they are a similar class of immuno-suppressing drugs)...just say NO...Godspeed to us all, sorry that I feel so strongly about this issue, but I actually have empirical reasons to back it up. Empirical yes..logical???? smile..well, until next time. Take care, Gina

[Sheila]

Diane
I have been on Herceptin every 3 weeks for 2 years and have never taken Benedryl....I did take tylenol the first time with the loading dose, but I have never had any problems....there is no way I could drive the 80 miles home if they gave me Benedryl!
Hugs
Sheila

[*_Donna_*]

Shieila,
I noticed you mentioned taking herceptin for 2 years. I will be starting herceptin with taxol for 12 weeks then continuing with the herceptin for 1 year. Any problems with your insurance co covering this? I have heard that the protocol right now is only 1year. So far my insurance has been covering things but I'm worried about exceeding the lifetime max. In addition to the bc we need to worry about now we have to deal with insurance issues.
Thanks
Donna

[Sheila]

Donna
I have BCBS of IL and they have never batted an eye at the cost of Herceptin...it is through a PPO, but then I am considered Stage IV....they may react different if I was stage 1. I did however file a complaint with the IL attorney generals office to get the price reduced as the Hospital in Chicago was charging 11,800 for Herceptin every 3 weeks which is much higher than other parts of the country. Thanks to all the great women here on this board, I had enough ammunition to file the complaint and the hospital has now restructured the cost so it is cheaper for all at this hospitlal. I think it depends on your stage and your insurance....don't back down, it is worth the fight. My onc. said she would like me on it for 5-7 years if it keeps working. According to my insurance, if I use a PPO hospital and Dr. I have no lifetime max on treatment expense, so I am very lucky.
Hope this helps,
Hugs
Sheila

[*_Donna_*]

Sheila,
Thanks for the info I have BCBS of MA and I will find out about the details of staying on hercepting. Will also address staying on herceptin as long as I can. I am also concerning genetic testing as my mo and grandmo both had bc. Thanks goodness for this board, I don't know where I would have regained my confidence to fight.
Donna

[Sheila]

Donna
My mother also has breast cancer, and my cousin so I know how you feel....BCBS has been exceptional to me, they even paid for my bras, swimsuits, prothesis etc. after I had the mastectomy. Now that I've had the reconstrucion, (which they also paid for to both sides) they are just paying for all my tests and treatment with Herceptin.
Good Luck
Hugs
Sheila