Prayers are answered ~~~
 

Prayers have been answered in more than 1 way, thanks to all of you!
As you recall, CVS/Caremark my BCBSIL pharmacy denied coverage for Tykerb.
My Oncologist appealed it and it was denied.
I contacted my husbands employer, as they are self insured and plead my case with them. They said my Dr. could appeal one more time. I knew she wouldnt, she was so upset at the insurance/Caremark.
Soooo, I filed my own appeal the other night, marked it urgent and included alot of documentation from all of you. I truly felt I didnt have a chance on this, but at least I would get my "day", and have the last word.
I started to fervently look in Indiana, ohio, Michiga, etc for a T-DM1 trial that I could qualify for...I spent 3 days non stop on the phone. I explained the urgency at getting in, as I am due to have herceptin Tuesday. I ffinally get an appt. in a week to see if I qualify, faxed them all my recent info and scans, filled out paperwork, and have to have another Brain MRI, Muga and Bone Scan....this trial is an open label with pertuzumab.
I decide i really should call my oncologist today and let her know what I am doing. She returns my call today and tells me she got a call from a Dr who oversees second appeals, he reviewed mine, and said he was overiding the previous decision and I am eligible for Tykerb as a solo agent with herceptin.
I am overwhelmed...my prayers are getting answered in multiples.....and now i need to make a decision on whether to go the Tykerb/Herceptin route, or see if i qualify (and I am almost positive I will) and do the T-DM1 / Pertuzumab Trial.
The way I look at it, if i progress on T-DM1, I can always go back to Tykerb, but if I progress on Tykerb, i will be to late for the T-Dm1 trial....

So i am calling a friend on this one (all of you)
...my oncologist says its up to me

What would you do......I need to have a plan in place by Monday of next week.....
Thank you for all the support, your teamwork has made this happen!!!!

Re: Prayers are answered ~~~
 

Dear Sheila,

This is the best news I have heard in a long time!! I am so happy for you. I am not in a position to give you any insight but I am sure you will make the right decision. I pray that God will show you the right path to win this battle!

I admire the way you never gave up! You really are such an inspiration to me!

love,
shobha

Re: Prayers are answered ~~~
 

Sheila, I can't advise sadly as dont know enough about these drugs but am thrilled you finally have a result!! :)

Re: Prayers are answered ~~~
 

Sheila - what good positive news for you.


My opinion, and it is only mine, - I would go for the TDMI.

I did so well and know several ladies who are well beyond the year. I would do anything to get back on it myself. It is a very tolerable combo to take also.

Good luck in whatever you decide.

Re: Prayers are answered ~~~
 

Irene, i am leaning that way...but wanted to get opinions...i value what each person here has to say...you are my net!!!!

Re: Prayers are answered ~~~
 

I can't advise on what to do, but thank goodness they reconsidered!

Re: Prayers are answered ~~~
 

Shelia, I am beyond thrilled to hear your good news...it's about darned time. Not a day has went by that I didn't think of you & this on-going fight to get Tykerb approved.

As you know since I recurred I just saw Dr. Slamon and he is all for the TDM1. He really lights up when talking about it. Its very exciting to hear him explain it and how it works. As you know from just this board alone the results have been great and with very little side affects. These decision aren't always easy but if you could get into the TDM1 study I would probably do that. Especially now that you know you can get Tykerb if it didn't work out for you. Whatever you decide I just can't tell you how happy I am to hear you won the battle. Now you can move forward.

Sending lots of love & hugs your way!

Chelee

Re: Prayers are answered ~~~
 

Irene, I'm so glad you get to have a choice. No advice, just my prayers that whatever you choose does wonderful things for you!

Barb A.

Re: Prayers are answered ~~~
 

Shelia: Two more cents from a caring fellow metsister, I would go for the TDM-1 without hesitation. I am on Tykerb/Herceptin and am very familar with TDM-1 and would be on it if I did not have brain mets.

I wish you only the best as you work through this.

Darlene

Hi from Adriana
 

Hi Sheila:

I wish you the best in the trial. I know you will do just fine.

I love you, I know you already know that.

Adriana

Re: Prayers are answered ~~~
 

Hey girl friend,
I am so excited for you. The wait is over. Now the decision. Chrisy(and others) has done so well on the TDM-1 trail. I would love to go with you if you have to go to MI, OH or parts of IL. We could make it a girl trip.

I know you will make the right decision. See you on Nov. 1st dear friend.
Donna

Re: Prayers are answered ~~~
 

All I can say is that I'm praying for you to have extreme wisdom!
ma

Re: Prayers are answered ~~~
 

Yeah, Shelia. Good for you!!! I would go with the TDM-1 just by the great results some people have gotten. Tykerb can be left on the back burner for later if need be.

Re: Prayers are answered ~~~
 

Hi Sheila,
Go on the TDM1 trial. It is truly a miracle drug. As you know I developed lung inflammation and had to stop after being on it for two years. However, it was still working for me, and I will try it again as soon as it is approved.

You can't imagine the pain I was in from the bone mets in my hip. One to two days after I started on the trial the pain disappeared.

I started Herceptn and Tykerb yesterday. So far I have no side effects. I am careful about what I eat, and hope I can manage the diarrhea if or when it occurs.

Keep us updated.

Barbara H.

Re: Prayers are answered ~~~
 

Oh, Sheila, what wonderful news!

We will continue to pray for you and all our sisters.

Re: Prayers are answered ~~~
 

Dear Sheila

You already answered your own question by saying that Herceptin/Tykerb will be there for you in the future if you should need that.

Miracles do happen in doubles!

Love from me.

Re: Prayers are answered ~~~
 

I know I already replied to you Shelia...but I wanted to tell you if you feel the ground shaking a bit its just me...I'm still jumping up and down since I heard your great news. :) It's the only news I had today that truly made me SMILE. Wooo hooo!

Chelee

Re: Prayers are answered ~~~
 

Becky makes a good, logical point.

My gut says: RUN DMC TO TDM1. I feel strongly it will bring you NED.

Re: Prayers are answered ~~~
 

Dear Sheila -
I finally feel like I can BREATHE again. Was holding my breath for you to get some kind of break in the logjam! Well, nothing like sweat equity to break that jam! You certainly poured enough into your situation.

Knowing that extremely stubborn nodes has been your major problem - and that a friend of mine has had her nodes nearly disappear after just 3 T-DM1 treatments (after years of sparring with them!) - I know it works well when some other treatments have not held for very long.

The choice is yours, but this trial will close as quickly as the rest across the country have done.

Such a happy turn of events to have the choices once again!

Re: Prayers are answered ~~~
 

TDM1!!! Best of luck!
Karen