Why do I have to fight for Benedryl?! (Warning, vent!)

Chelee · 12-22-2009, 01:26 AM

I know Benadryl is not required as a pre-med before herceptin. But I've had minor problems in the past if I don't get Benadryl first so I want it every time. I rather be safe then sorry especially dealing with my lung problems. I never had any problems getting Benadryl the first go around with cancer...but since my recent recurrence it's been a pain in the butt to get it! One excuse after another and I'm fed up with it.

When I first started on herceptin in Sept. I told my onc I wanted Benadryl. She went into a rant as to why it's not needed for herceptin. I told her I still want it...and explained why. So she says there is a new rule concerning Benadryl. That if she orders it for me I have to have a ride home or WAIT at the cancer center for 4 hrs after my infusion. (She knew I wouldn't want to sit there that long so I'd say no.) But I told her no problem...I'll get a ride home. So since that didn't work she tried to convince me that Pepsid works the same way Benadryl does so I wouldn't need the Benadryl. (Give me a break!) I did not give up so next she tried to tell me to stop at my local pharmacy and & buy a bottle of Benadryl (25mg) and take it BEFORE I get to my infusion. I insisted that I wanted the IV Benadryl...so she gave in at that time.

But since my recurrence and our last chat about it, I'm STILL having problems getting IV Benadryl. What is the problem...why is my onc so against giving it to me! Benadryl makes me so tired...I'd really rather NOT have it...but I don't feel good if I don't have it. There is a difference for me...so what's it to them?!

My regular chemo nurse is gone for the holidays. I had another nurse today & she NEVER gave me my Benadryl and I was pissed when I found out. It's the first time I actually got mad in there. My onc had even ordered it...but this chemo nurse said the pharmacy didn't have it ready when she first went up there. I said then you should have waited like MY chemo nurse does! She said I'll go get it now and give it too you. I was angry and said it's too late now, it was almost 3:30 PM! The whole point is to have it before my herceptin. How stupid to even offer me Benadryl at the end of the day when it was time to go home. Has anyone been told you can't have Benadryl if you don't have a ride home. And have any of you had to fight to get your benadryl if you want it? Sorry for the vent but I had a really bad day. I feel bad even mentioning this when so many others have so much more to deal with.

Chelee

whatz · 12-22-2009, 05:07 AM

Hi Chelee,
No, I've never had to ask for it but I'm also not in a recurrent status (though I'm not sure why that should make a difference). Like you I'm somewhat surprised that Pepsid was supposed to work the same as Benadryl (hm...I that Pepsid was somewhat of an Ant-acid and Benadryl an AntiHistamine). Anyway...at the beginning my nurses did not want me to drive either. This apparently does not apply anymore since I'm somewhat used to the stuff now after the 12 Taxol/Herceptin treatments. I get two Tylenols (though I always reduce that down to 1 since I don't need two, may not even need the 1 but have been too chicken to try that ) and Benadryl as a pre-med as they are hanging on the Herceptin. Never had to ask for it, would not have known to do so at the time. Sounds like it shall all get better when you finally can change providers in the new insurance year. (coming up soon as I seem to remember)
Merry Christmas :-)

whatz · 12-22-2009, 05:16 AM

On an after thought...Maybe some of the problems you are having are because of the contract between your insurance and your provider. Not that that makes it right, it's just a thought i.e. My weekly Herceptin/Taxol treatments were billed at $1600/$1300 respectively. I think on the Herceptin the insurance paid like $950 and on the Taxol (get this) $40. I about fell out when I saw that. The way my insurance contract works with the hospital is that the hospital writes off the difference but what a difference $1300 vs $40. I don't understand how that can be correct and worry that it in the long-term affects care and it makes me mad since I don't think that's right but then how can you ever figure out hospital/insurance billing if the cost is all-over-the-place and deals like the above are struck. Maybe your provider has just lost too much money on you due to your insurance (not your fault just as it is not my fault). That's just a thougth (and a worry that has crossed my mind before in my situation though I love my onc). Benadryl IV though should not be expensive. I can look up on my bill how much it was but you could offer to pay (if you are financially able) if that would help the situation.

Pam P · 12-22-2009, 06:28 AM

Chelee - I'm always having the opposite fight! I hate the effects of benedryl so am always fighting to have it reduced or eliminated when I'm on a chemo that calls for it. I think because herceptin does not "require" benedryl it is probably a big insurance and protocol issue. If it were me and I wanted it I would just buy the OTC benedryl & take 50 mg or whatever you'd get by IV right before the herceptin. Be careful with the driving though it can be an issue. Do you have far to drive home?

Sheila · 12-22-2009, 07:02 AM

Chelee
Like Pam, I hated the effects of the Benedryl IV...there was no way I could drive after that...I got it as a premed with Taxol. It is given by some infusion centers before herceptin , but is not standard.

The Pepcid is also a H2 histamine receptor antagonist; action: inhibits histamine at H2 receptor site in parietal cells...which not only blocks gastric juices, but aids in reactions to drugs....I would think it would be more expensive. If it continues to be an issue, make sure it is ordered and the reason why, then they must give it to you. If its a cost issue, and the insurance wont pay, you are better off to pop 2 oral Benedryl at least an hour before the infusion...to pay for it yourself may not be feasible...we all know what they charge for an aspirin, like 10.00...so you can imagine a drug that is administered IV.....

Hope this helps!!!!

Yorkiegirl · 12-22-2009, 07:12 AM

I never wanted the IV Benedryl, So I always took two Benedryl before I left home and I also got two Tylenol when I got there. But that's me.

alicem · 12-22-2009, 07:49 AM

Chelee,

Sheila is correct about Pepcid . . . "Pepcid is also a H2 histamine receptor antagonist". My husband has been dealing with a bad case of hives for almost 2 years now. The allergist prescribed Pepcid as one of the 3 antihistimines he takes. Benadryl is NOT one of them (because of the sleepy side effects). He buys the generic brand at Costco and it is not expensive. He gets about 200 tablets for $20. As my husband explains it, your brain sends out a signal to produce the histamine, and this histamine produces acid in your stomach. The Pepcid prevents your brain from sending out these signals - a receptor antagonist.

Hope this helps.

MJo · 12-22-2009, 07:52 AM

My oncologist didn't think I needed premedication before Herceptin. That made me nervous. Like YorkieGirl, I took Benedryl on my own before I got Herceptin.

hutchibk · 12-22-2009, 10:37 AM

Chelee - I beg you to try this idea. Ask for or just take the standard little 25 mg benadryl pill with you and take it yourself about 30 min before your treatment. My benadryl was given to me as 25 mg no matter if it was dripped, pushed or swallowed in over-the-counter pill fashion. (I no longer take Benadryl when I get Herceptin, I don't need it anymore).

When it was dripped in, I was goofy, sleepy, drowsy for hours, and I hated it.

The ONE AND ONLY TIME that they pushed it (via syringe into my line) it hit my bloodstream WAAAY too fast and I had an out of body experience. I was like somewhere between a severe shuffling Parkinson's tremor patient and a lobotomized Alzheimer's memory patient for hours afterwards...

So, from that point forward my doctor ordered that I only get the 25 mg OTC pill... and it was all I needed. It hits your blood stream slower but still does the job, it is less expensive than a drip or push liquid version, and you don't have to be "handled" or driven home...

Chelee · 12-23-2009, 01:19 AM

I had no idea that Pepcid is also a H2 histamine receptor antagonist. I thought it was just another load of crap my onc was telling me. She will say anything to talk me out of what I want. So I guess I have to give her this one for a change.

I HATE taking benadryl too...but my first yr of taking herceptin my onc decided I didn't need it which I was happy about. But I had breathing problems and tightness in my chest without it. Scared me to death. So that's why I've been afraid not to have it before my herceptin infusion.

This so called driving rule is a joke. I did a full yr of herceptin the first yr on a weekly basis and drove home each time with no problems. I'm only 12 minutes away...peace of cake.

It has to have something to do with the cost! Or they wouldn't tell me to go buy my own benadryl and take it before I get there. We all know benadryl via IV is going to work quicker and better then taking a pill. They wouldn't be putting up such a big fuss for no reason...it's got to be the money factor. Plus I know it adds a hr to my infusion when i get benadryl. That might be part of it? (Since it was too late to give me the benadryl Monday...I was FINE today...so maybe I can do without it.)

Brenda, I have to ask...why did they give you Benadryl via IV push? I've never heard of it done that way. Your experience sounds scary! What a nightmare.

Chelee

Sheila · 12-23-2009, 05:45 AM

Chelee
My Benedryl was IV push before Taxol....it is immediate and unforgiving....I used to tell my nurse that if I start drooling, get a tissue.....hence why I needed someone to drive me home.....I always got Benedryl, then Pepcid, then Dexamethasone , then the Taxol and then Herceptin.....all in 1 1/2 hours!

WomanofSteel · 12-23-2009, 07:08 AM

I think Brenda has a point. Save yourself some grief and just take a tablet. At least then you have that piece of mind.

whatz · 12-23-2009, 07:09 AM

My Benadryl is always IV. I got it with the Taxol/Herceptin combination and have gotten it for my first Herceptin only treatment. The first few (maybe 3) Taxol/Herceptin treatments I was really sleepy and slept thru the entire treatment after the Benadryl. Now it does not seem to affect me anymore quite as much (I guess I'm now desensitized to the effects), I can still tell I'm a little slower than normal but feel OK driving afterwards (would not have done that the first 3 times). So I take it that it may be OK to try Herceptin without the Benadryl? (anything I can cut out I feel like will lessen the stress my body is under).

ElaineM · 12-23-2009, 03:52 PM

I just wanted to say I am sorry you have been having trouble with the medicine for the white blood count and the Benydryl issue. The whole thing could be related to insurance. Doctors walk a fine line trying to get what they think their patients need and dealing with insurance companies who do or do not want to pay for medicines, surgeries and other treatments.
I know things are pretty rough for you right now, but please try to relax a little and have a wonderful holiday season with your family and friends. Let's hope and pray that 2010 will be a healthy year for all of us.

hutchibk · 12-24-2009, 09:56 AM

I don't know the exact reason for them to "push it" into my line unless they only had the prepackaged syringes and maybe they had run out of the drip bags... (they keep syringes around for those times when someone has an bad allergic reaction to a treatment and it hits the bloodstream fast fast fast to counteract the allergic reaction.)

Anyhoo, I loved that the pill worked just fine for me after a couple of years of drip and losing the whole day being drowsy.