Wednesday, June 20, 2007

Hello I Must Be Going

If anyone would like to explain the logic behind this medical protocol I would LOVE to hear it.

Today I was supposed to start Taxol. Taxol is a taxane, which is class of chemotherapy drugs made from a Yew tree.

They administer it by IV and mix it with a detergent known as cremaphore. (Not sure of the spelling on that, will have to edit later.)

Cremaphore is an irritant, and many people are allergic to it. No one gets allergic to the Taxol itself, but they can have very adverse reactions to the detergent. SO, the medical community has designed a system. They had help from the Department of Motor Vehicles in the planning of this.

Part One: Load up patient with mega dose of steroids and Benadryl.

Part Two: Start Taxol and wait to see if patient starts having trouble breathing, is flushed, throat closing up...etc.

Part Three: If any of these reactions occur- STOP the Taxol and give more Benadryl and steroids and do it AGAIN.

Part Four: If reaction continues repeat part three. If the patient still persists in reacting to drug take them off it and either send them home if they can stop it or send to the ER.

Part Five: If patient does not have a reaction, follow step one and two and make sure patient knows that she will be there for over four hours every time she gets this drug.

Sounds like fun, eh?

Then along comes Abraxane. Abraxane is the drug Taxol that is NOT mixed with a detergent but is coated with albumin, a protein that is found naturally in the body. There is NO allergic reaction to it. There is no need for Benadryl or steroids and it takes only 31 minutes to infuse. And the best part? It is more effective.

Now the kicker:
They insurance companies won't pay for Abraxane UNLESS YOU ARE ALLERGIC TO TAXOL.
They would rather pay for the Benadryl, steroids, hospital stays and wreak havoc on your body then give you something gentler that works better.

Does this make any sense to anyone??
Is this thing on??

Now for me.

I go in today fully expecting to be in the ER by dinner time because I am allergic to just about everything. I told them this. I begged for Abraxane. Nothing worked. My dad was with me and we settled in for our four hour ride into hell.

Well, I never got there.

Today we discovered that I am allergic to Benadryl! Who in hell is allergic to Benadryl? I was once told by an ER doc that I should avoid it after I took it for a bee sting and had more trouble with the Benadryl than the sting. I informed my nurse of this but she said that "didn't count."

My face turned dark red, my heart was racing, my lips and arms were numb, I was sweating and freezing at the same time, I was having vertigo attacks and holding on to the chair for dear life. Before we started my pulse was 60. After the Benadryl it went to 112.

The nurse wanted to wait and see what happened. She had the marvelous idea that I would feel better and we could still do the Taxol and if we did and I was allergic to that too, well then she could always give me Benadryl!

Sometimes I think I am living in a Dr. Seuss book, I really do.

I asked, nicely, if it would be at all possible if maybe a DOCTOR could make that call and my oncologist came in and asked me what I was feeling. My dad tells me I made absolutely no sense in my reply. The doctor apparently only needed to look at my face, which resembled a death mask, and he told the nurse to unplug me and send me home.

I do not know what I will do next. You can be sure I am going to bring up the Abraxane.

Why do cancer patients have to fight for the meds that will help them and not harm them? Isn't cancer enough?


Anonymous said...

OMG! I had the same thing happen to me!

They "challenged" me by turning the Taxol on again after my face got flushed and my breathing got all freaky.

They gave me a ton of Benadryl and nothing helped.

I hope you get the Abraxane. I am on it now. I have no problems.

Good luck no surrender!


Anonymous said...

Oh Gina...what a crock of crap!!! Grrrrrr....this kind of stuff makes me nuts too.

I was only "mildly reactive" to the Taxol. That meant if they gave me 3 times the normal dose of benadryl, and then ran the Taxol slow it didn't feel like a hippo was sitting on my chest! I hated it, but it weirdly got better as I went along....besides, I had so much benadryl that chemo was one loooooong nap.

I sure hope they just let you have the Abraxane.

Hang in there.....

Deb C

Jacqniel said...

I have wondered why they don't just dump taxol, too! I get Abraxane and it is SO much esier than when I had Taxotere four years ago. Prayers for abraxane for Gina! You fight girl!

Jenster said...

That is SO frustrating! Insurance companies anger me to no end for this exact thing!

I'm so sorry you went through this and I hope the powers that be pull their heads out and give you what YOU need!

Twink said...

OMG! What a companies are the current focus of my anger/hate...whatever. Remind me to tell you my 'thrush' story...

In any case, I did 4 dd Taxotere (finished May 24th). My onc said it tended to produce fewer SEs. Benadryl wasn't required (not sure if that was just me?). I get mixed info on the Taxol / Taxotere subject though...

Good luck to you Gina!


Gina Maisano said...

I needed that boost!
I am scheduled for something on Wednesday...not sure what they will be giving me but it is based on what my insurance will approve and it cannot involve Benadryl at all.

Jacque, do you have to pre-med at all for Abraxane? (Emmend, decadron, etc.?)

I hate missing a week of treatment, but hopefully the cancer cells weren't paying too much attention!


Jacqniel said...

I get decadron, benedryll and something else, and take Kytril the next day - but I am not sure if I really need any of it. I hate to not get it since I was so sick four years ago.
I am getting the dose dense every three weeks rather than weekly, so maybe that is why I have the premeds.

Kelly said...

GAH...I hate this stuff so much!!! So sorry you had to deal with such incompetency. Why don't they listen to us? It's not like it's, oh I don't know...IMPORTANT or LIFE OR DEATH or anything like that.

I've had so many dumb things like that happen to me. I've had to really pay attention, be assertive, and straighten out my nurses so many times I've lost count.

I'm just glad I'm aware enough to notice these things, and pushy enough to speak up about them. I often wonder about all of the older patients around me.

I did Taxol my first time around, am doing Taxotere this time. I hate Decadron with a passion, but love Benadryl with an equal passion. Sucks that you can't have it. I liken the feeling/buzz I get from it to having a couple of glasses of wine.

Hope you get the Abraxane, that you tolerate it well, and that it kicks cancer's butt to the curb once and for all.


Anonymous said...

Gina, Praying that today goes well with the Abraxane. After reading everyones post about Taxol, I am thankful I didn't pull it when I signed on to be part of a study on different drugs.

You wonder sometimes how these nurses and doctors can pull some of the crap they do - I have often wanted to tell them to sit in the chair and let me plug them in and see how they like being on the receiving end.

Good luck!!!!

Anonymous said...

Hope the treatment went well. Sending hugs
Deb C

Kelly said...

Thinking of you and hoping yesterday went well.

Please let us know how you're doing when you feel up to it.


Gina Maisano said...

Hi everyone!

I got the abraxane yesterday. I can't believe how nervous I was beforehand.

Anyway, it all went smoothly. She told me any hair I have left will come out from it. Not too much of a sacrifice there! There isn't any left!

I want to thank you all so much for helping me through this rough patch. Your words of encouragement mean so much to me!!


Gina Maisano said...

Question to the blog girls,
I recently discovered I can view your blogs by clicking on your name or picture if it appears highlighted on this comment page. Today I was having some difficulty.

I can't find your blog anymore. Did you change the name?
Twilah, I see you have a profile page, do you have a blog too?
Deb, I still can't post on your beautiful blog, why is that?!

I would like to add all your links to my page if that is ok with you all!


Jenster said...

'tsokay with me. :o)

I'm glad the new treatment went much better! What a relief that has to be for you.

You know, I think the unknown is always the worst. It's good you know now how you're going to handle it.

Jacqniel said...

I have tagged you for a meme at my blog page!

Kelly said...

Mine is:

How is the Abraxane treating you so far?

Gina Maisano said...

Oh good! I can add you all to my links list!

The abraxane hurt like the devil on Saturday. I MEAN REALLY HURT. I hope this isn't a cumulative thing... but I reassured myself that the cancer cells must feel worse and a pint of rum raisin ice cream didn't hurt either!


Anonymous said...

have not heard from you in a while. I hope things are going OK. Let us know how you are doing when you get a second....we worry ya know :)

Deb C

Gina Maisano said...

Thanks Deb!
I am OK.
Had some nasty s/e's from the Abraxane so now I will be switched to half dose every week instead of full dose every two weeks.

And NO :( it doesn't mean I will be done sooner!! Oh how I wish it did!

Thanks for checking up on me!