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

Re: Prayers are answered ~~~
 

Seems like doing TDM1 now secures your options. Any chance of getting the Tykerb override in writing in case you need it down the road?
Which TDM1 trial you are aiming for?

Re: Prayers are answered ~~~
 

I know very little about these trials, but as a business coach, I know something about making decisions. If there's no difference medically speaking between taking one tx first and then the other, or doing it the other way round, you should take the one that's hardest to get into. If it's more likely that you will be able to get Tykerb after the TDMI, you should choose to do the latter first.

And there's a neat trick to test your own instincts: Get a coin and flip it. Decide which side it Tykerb and which one is the TDMI trial. Now notice your first emotion when you see the outcome. Are you relieved? Than that's the way you instinctively want to go. If you are disappointed, you want to go the other way, and that's ok too. If you don't have a strong feeling either way, you can come to a decision talking to the experts. You will feel ok with whatever you decide.

Love

Jacqueline

Re: Prayers are answered ~~~
 

So thrilled to read your news!!! Two good decisions = no bad choice. Go with your gut feeling on this.

Re: Prayers are answered ~~~
 

I am so happy for you! Good luck!

Lisa

Re: Prayers are answered ~~~
 

Sheila,
Wow..Congrats!! Happy dance, happy dance.

I vote TDM-1 the miracle drug. I fully agree with your logic that you could use the TDM-1 and then (IF) you needed to you could use the Tykerb as a fall back.

Rich...our resident attorney gave great advice to get agreements in writing regarding the Tykerb to save time. But of course...we know you won't need it.

I am thrilled for you and also wanted to let you know that you are an inspiration to us all in terms of being your own advocate and NEVER, NEVER taking NO for an answer.

AWESOME

Re: Prayers are answered ~~~
 

Shelia,

I am so happy to hear your good news. Like Lori, you have always been an inspiration to me not to give up Hope. You are truly a Warrior.

Please let us know which choice you make. Will you have to travel far to do the trial?

Amelia

Re: Prayers are answered ~~~
 

Shelia,

Great job on your diligence with your treatments. You are a hero for all of us!!!

Re: Prayers are answered ~~~
 

Hi Sheila,
I am on the TDM-1 in Ohio. I haven't had the first staging yet, but so far it has been easy to take--I am hopeful--Good luck with your decision
Kathy T

Re: Prayers are answered ~~~
 

Re: Prayers are answered ~~~
 

Sheila I am thankful that you have 2 good options. I sure don't know which to choose, but I can feel the excitment re: the TDM-1.

Meditate and pray about it. You will be taken care of.

Love,
Lexi

Re: Prayers are answered ~~~
 

Sheila, Sounds like you have the choice between 2 good protocols. I am on xeloda/tykerb right now. Best of luck with whatever you choose. Fondly, Ceesun

Re: Prayers are answered ~~~
 

Sheila,

This is wonderful news.

I would go with the TDM-1 trial, first. As you mentioned, you can always go on Tykerb/Herceptin in the future.

Sending you a lot of hugs for all your hard work.

Joan

Re: Prayers are answered ~~~
 

I vote TDM-l but just am so happy and either choice
you make opens the door for you. Follow your gut,
and you probably already know what that is. This
is such great news. Persistence and patience paid
off....
patb

Re: Prayers are answered ~~~
 

By in writing, it probably doesn't have to be a document. An e-mail responding or mentioning it even in passing might do. Just thinking getting folks to go ultra formally "on the record" might shut them down. Sometimes I happen to not get to the phone in time to prevent people leaving voice mails..coincidentally when I want a record of things. It feels less formal to them yet they know they're being recorded so it's all good. Ahem.

Re: Prayers are answered ~~~
 

Rich, Good point, but when the denial was overturned by my apeal, they have to send it via letter to my house, and the Dr. Just like they send a formal letter of denial...so I think I will keep it safe, just in case!

Re: Prayers are answered ~~~
 

What great news Sheila!!

I always say go with your gut feeling. If you feel comfortable with the Trial, go for it!! Like you said, if that doesn't work well for you, you still have the Tykerb!!

Congrats for two successful battles!!

Re: Prayers are answered ~~~
 

Fantastico!!

There is some justice in the world. Well-done my friend!

Your logic on holding off on the Tykerb makes much sense.

TS

Re: Prayers are answered ~~~
 

I am so happy to read that you have choices !! Such fabulous news !!

Re: Prayers are answered ~~~
 

oh my God! Sheila! I have these things (tears) leaking uncontrollably from my eyes! Of course, normally I would think it was the chemo (yes, my dear, even T-dm!) But I know differently - they are tears of joy. I knew your prayers would be answered...but in multiples??!!!

Sheila, to me this seems and easy choice. Gold plate the letter authorizing Tykerb as single agent with Herceptin, get on the DM1 trial pronto, and then you not only have pertuzumab to back you up, but also Tykerb/Herceptin.

Sounds like a plan b hat trick!

You're right, the window for DM1 has presented itself now for a reason; climb through it, sister!

Much much love!
Chris

Re: Prayers are answered ~~~
 

Sheila,
This is really weird, and maybe a bit Santa Cruz...but in addition to all the prayers and constructive ideas you've received, on Thursday or maybe it was Friday?) I was thinking, praying, and composing email about you. The email was to a friend of mine, not a close one (she's the wife of one of my hubby's old college friends), but she works for BCBSIL.

The gist of the email was, "hey, hope you're doing well, when will we get together next, and oh by the way, I know this has nothing to do with you, but I thought you should see the view from the other side...about a good friend of mine" and attached a link to the "denial" thread.

I was very emotional while writing the email, and decided to wait a day or two before sending it...

But maybe the message "got sent" anyway...

Can't wait to hear what you decide
Chris