Calling all TNs

As a husband...note to self. NEVER bring home radishes or carrots when sent to the grocery store. I knew this site was a wealth of valuable information!

Graceforme: thank you and good luck to you.     I did not mean to put any negative stuff out there but that is what my MO told me.  She said she wished that she could say cured but with the way mine is behaving and being TN she thought I might have to deal with it again............hopes I won't but would rather tell me so I did not pay attention to things going on

AlHusband:  Counting down the minutes until Friday with you, please post an update when your wife is out of surgery and recovering! Many prayers continuing!

It’s been a few days since I’ve checked in.  I was supposed to start Gemzar & Carboplatin on Monday but I got a call less than 1 hour before my appointment telling me that my insurance had not yet approved my treatment.  As this week has evolved, I’ve found out that the insurance will pay for all of my treatment EXCEPT for the Carboplatin because it is an off label drug.  They kept telling me it was off label but did not explain what that meant until yesterday.  Carboplatin has been labeled (or approved) by the FDA for ovarian cancer.  The fact that Carboplatin has not yet been labeled by the FDA as a breast cancer drug, it’s considered off label and my insurance plan will not cover off label drugs.  I’ve been told that I can pay for the Carbo myself and the insurance will pick up everything else.  I’m SO disgusted by this!!!  I have 2 separate oncologists at 2 separate hospitals in 2 separate states telling me that Carbo is their first choice for my treatment plan but that doesn’t matter.  Also, despite multiple clinical trials proving the effectiveness of platinum based drugs in TNBC, my insurance plan will only pay if the FDA says the drug is for BC.  I’m still awaiting the final decision from the insurance company but after talking to the director of benefits with my company, I think I already have my answer.  I refuse to let my insurance dictate whether or not I get the appropriate treatment for ME.  I know God will help me through this and he will help us pay for this treatment.  It’s just so frustrating!!!

Oh, and to add to this week of wonderfulness, I found out Tuesday that I’m infertile.  I’m 32, have never been able to get pregnant and now I know why.  In 2004, I had laparoscopy surgery for endometriosis.  I was 4 months away from getting married and my GYN at the time assured me that when I was ready to have children, I should have no problem.  This is not how the fertility doctor explained it to my husband and I this week.  As he read my surgery report, he’s eyes widened and he proceeded to tell us that I had stage III endometriosis at the time of surgery, which compromised my fertility long before my BC appeared.  I’m SO angry that this was not explained to me at the time of my surgery.  Instead, I’ve carried this hope and dream of producing/having my own child with my husband for 9 years.  I was prepared to hear that I was infertile but it was harder to hear than I thought it would be.  I know there are other options but that doesn’t matter to me right now.  I just want to get the damn chemo that I need to fight MY CANCER and move forward.  It just shouldn’t  be this hard!!!

Beachbound my wife had already had her lifetime limit of Adriamycin (16 years prior for Lymphoma) when she was diagnosed. To give her more Adriamycin would put her at risk of Heart Failure and/or Leukemia. So Adriamycin (standard treatment) was not an option. The doctor AND tumor board at Vanderbilt University...and a renowned doctor at Weill Cornell in NYC...and my wife's own local MO, all agreed that Cisplatin and Taxol was what should be administered. This is also an "off label" use for Cisplatin, which is similar to Carboplatin. The insurance company never even questioned it! That said, I'm sure there is an appeals process if your doctor agrees to champion your cause. Insurance companies are absolutely ridiculous at times.

Beachbound009-I'm so sorry for what you're going through. I learned about a co-pay relief program through my center. I did not think I'd qualify but I did. They covered my chemo and neulesta copays. I will PM you with the info.

Beachbound, with all the doctors recommending that specific drug for you, likely they have seen a great track record of insurance paying for this, because most doctors won't keep trying to prescribe something if it gets continually denied.  So, if that's the case and let's suppose for a moment it is, your insurance may not be the norm on approving this drug.  I'm getting to my point .... while waiting for the decision, send an e-mail to your local news and to The Today Show.

Very important story here:

There was a case recently where a brother and sister with EXACT same health diagnosis, seeing the SAME doctor, and having the SAME insurance tried to get on a drug.  It is a $20K a month drug.  The sister's insurance claim processor approved it, and the brother's insurance claim processor denied it.  They sent in a letter to the Today Show, who asked them both to come on and share their story.  On the morning of the show, the producers put in one more call to the insurance company, and found that they were going to approve it, and the guy got to start on the medicine the next day.

The relevant message here is that it was just the luck of the draw with getting a great claim representative. The decision between life and death was literally in the hands of that one rep - who denied the claim.

Maybe you can call back and ask for another claim representative, a supervisor or something.  In the meantime for fire power, you could get some of the news affiliates involved.

I hope they reconsider and grant you the treatment that all the docs are recommending.

Another option is to have each doctor write a letter about the success they have had with it, and fax them over as a group of letters.

I'm so sorry to hear of the problem you are dealing with.

I hope you get a favorable resolution soon.

Beachbound, adding to what Grace said, there was a treatment card/program that my Onc's office had as well, where they get like 5 of these cards a month and can sign up a patient for access to the card.  The only requirement was that the patient had to pay for the 1st treatment and then all the rest were covered.  If you had to go that route, you can inquire if insurance prices at the in-network discounted contract price in that situation, so maybe the end cost will not be as high as the streeet price.  I hate thinking this at all, let's all pray they approve it instead!

thanks gang.................I am doing ok, just tired and still dealing with the burn issue but it is getting better.   The stickers they put on me ripped my skin off (I am extremely sensitive to stuff) so now dealing with that too.  I am just a nervous wreck for some reason today.  My heart has been acting up again with the rapid rates so looks like I might have to go back on the meds.  Going to give it a couple more days and then decide.  As far as celebrating just a lot of thanking God and then a good meal from O'Charley's .....:) 
Since it came back my guard is down a lot more this time as I am even more afraid.  Just knowing that the darn monster could be in there just spreading even as we speak.....so starting over with the stinkin' thinkin' but this time I think I have the right for a bit anyways.    Just scared of this darn thing....:(

Happy to hear Kathy is doing well, Alhusband! Take good care of her!!

Al - so happy Kathy's surgery went well! Hoping for a speedy recovery for her. You are both so blessed to have each other - I'm sure she really appreciates your "super" support during this battle! Don't forget to take good care of yourself too so you are at your best to take care of her! Stay strong all fellow warriors - we will win this battle! Lana

Thanks all for the well wishes. Kath's home now and resting...ahem...comfortably?

I'm the new "drain guy".

"That's the sound of the men....workin on the drain...gaaa a ang! Oh don't you know, that's the sound of the men, workin on the drain, gang!" ~ Sam Cooke

My husband cleaned my drains too- it grossed me out (I know it wasn't really THAT gross, but I didn't like it!).

Alhusband, Thrilled you have your lady home and all went well. Best wishes to you both.

All you other ladies, you are my inspiration. Just over three months after finish of all treatments. Rads fatigue lifted. Right now feel " Normal " again, just concentrating on the future and reading up on latest on TN, not as scared as I was a while ago.

Blessings and swift healing to you all.