Barb1260

Silly at-I still have my port. I almost feel like if I take it out I’m tempting fate-as soon as it’s gone I will need it. 
I’m going to wait a while. 

Silly at-I still have my port. I almost feel like if I take it out I’m tempting fate-as soon as it’s gone I will need it. 
I’m going to wait a while. 

Hey Roseann. Welcome to the finish line!!!  I sometimes think my onc isn’t understanding what I’m saying either. I sometimes go home and call, leave a msg, the nurse calls me back and then she translates to the onc. Then she gets what I’m saying!  I don’t know why that works. Let us know how those scans come out. Enjoy your medical freedom! 

Hey Roseann. Welcome to the finish line!!!  I sometimes think my onc isn’t understanding what I’m saying either. I sometimes go home and call, leave a msg, the nurse calls me back and then she translates to the onc. Then she gets what I’m saying!  I don’t know why that works. Let us know how those scans come out. Enjoy your medical freedom! 

Barb, a little late, but good for you! I hope every cell comes back cancer free!
On another note, I finally finished my year long (very long) treatment of Durvalumab! On Aug 24th, Yay me! There were times I thought I would rather die. Don't fret y'all newcomers to the Durva Club 🤪 I can be quite dramatic at times! But all's good. I had a few hic cups along the way.
I welcome you all to the club. It has helped me to navigate my journey quite well. I have a CT Scan and Bone Scan schedule at the end of this month, then I see my Oncologist on November 12th for the results. Happy to say I am off all pain meds and Xanax too. However, I am way too squirrely and think maybe I should be on some kind of anxiety med, also I was given Tramadol for pain, I hate it, makes me want to puke. 
Michelle, even tho I gave my APRN and DR the info on Naltrexone for pain relief, they insist that it is for drug addition. But they are willing to refer me to a pain clinic. Unfortunately, they are missing the point completely. Ugh! My Onc feels my pain is cancer related so I should no longer be in pain WTF! Am I now cancer free? Does she know something I don't?
Guess I will just wait for my scans and appointment in November 😁
Have a great weekend everyone
Take care
Roseann

Barb,
Let me throw my hat in the ring here with the rest of our family.  Hooray for getting the approval.  I have faith that your great strength will bring you through this difficult journey.
Lou

WTG--great news! Yes, persistence pays off.

Hip-hip-hooray for Barb! Way to...
Stay the course.
Tom

I won the appeal!!!  Just got a call from the nurse case manager for the insurance company. PET approved!  She’s calling the oncologist to get it scheduled. I already left them a message as well. 

Barb .. I hope the results show you are cancer free down to the cell level. 
Good news! There are well over 100 labs in America working on developing a vaccine.
Just wait til they get the German shepherds involved!

Outstanding news!!!! Go Barb!!!

Congratulations and hopefully that will lead you to a good plan for fighting cancer.

Yay! Persistence pays off, sometimes even with the bottom dwellers.

I won the appeal!!!  Just got a call from the nurse case manager for the insurance company. PET approved!  She’s calling the oncologist to get it scheduled. I already left them a message as well. 

I won the appeal!!!  Just got a call from the nurse case manager for the insurance company. PET approved!  She’s calling the oncologist to get it scheduled. I already left them a message as well. 

Same company that denied my PET, chemo & biomarker studies.  They are bottom dwellers.  Seriously with a very shady group of founders.  I’m sure the DOI has a rather large file on them. 
File a vendor complaint with the CEO of the Insurance Carrier too.  
 
Go to the mattresses! 
 
PS my employer fired them in 2019.  

Barb, 
All is going well here. All those years I worked for the insurance companies, we had a saying, "working there we'd step over a dollar to pick up a dime".  The PET scan denial is another illustrative example of simple stupidity in the name of "cost savings."  A couple of thoughts: 
1. What type of contract does your employer have with the insurance company?  At risk (health insurance is responsible for paying the claims in exchange for a per member per month set fee) or self insured, otherwise known as an Administrative Services Organization (the employer pays a smaller fee to the insurance company to administer the benefit on their behalf and the employer pays all claims).   
2. If ASO, then you can go directly to HR and ask for an exception (I know you've been down the HR route before.  HR can intervene on your behalf without having to necessarily jump through the appeal hoops.  As you say, it's pay now or pay  more later.... 
3. If At Risk, then find out what the credentials of the insurance company "peer reviewer" was.  You will need to file an appeal.  It should be a board certified oncologist. (not an internal medicine doc with a sub-specialty in oncology).  When my biomarker tests were denied, my employer (ASO) was not happy about the reviewer who was only boarded in Internal Medicine. 
4.  There are two appeals processes, a member appeal (which comes first) and a provider appeal (which the provider executes after the member appeals process has been exhausted. 
5. Ask to file the member appeal, but you are not responsible for gathering medical records. The insurance company is responsible for obtaining the records.  Sounds like the clerk involved here is being really lazy.  If the insurance company is really pushy, then have your doctor write a letter explaining why the PET is medically necessary.  Send a copy of that to HR. 
6. For At Risk contracts, the State Department of Insurance has oversight, when you file an appeal with the insurance company, also file a complaint to the DOI, include any correspondence you've received from the insurance company. 
7. Depending on how much energy you want to put into this, you might want to contact your Congressional Representatives.   (Start with the Federal and then your local ones). 
 
Unfortunately, the squeaky wheel gets the grease.  Sometimes if a member was deemed to be "too noisy" we were told to just pay the claims because of the administrative costs of responding to a barrage of complaints.  Just keep pestering the insurance company for next steps until they've all been exhausted.  If something doesn't make sense ask to speak to a Director or VP (not a low level clerk). 
Keep fighting..... 

Well another CT in the bag. Doc said go live your life and I’ll see you in November. 

Michelle-sound like you are doing well. Paperwork stinks on every level and is ridiculous. Don’t even get me started about insurance. Speaking of trips, I was supposed to go to NJ next month for Music Fest in PA -of course that’s cancelled. Still might go somewhere within driving distance but gotta wait and see. 

My short lived victory-just received the printed report from the CT last week. Doc was asking me about my rib issue that showed healing on previous report and mentioned again on this one. Have come to the conclusion that I probably broke it coughing when I had pleurisy. That was the 2nd rib. Now it states I have developed sclerosis of the third rib and could represent sequela prior trauma and attention on follow up exam is recommended. So of course I look up all this and find it could be a metastasis?  I can’t wait until November and emailed the radiation oncologist to look at it. Of course I will call the oncologist tomorrow but she really wasn’t too concerned. anybody ever see this wording on a report?  

My short lived victory-just received the printed report from the CT last week. Doc was asking me about my rib issue that showed healing on previous report and mentioned again on this one. Have come to the conclusion that I probably broke it coughing when I had pleurisy. That was the 2nd rib. Now it states I have developed sclerosis of the third rib and could represent sequela prior trauma and attention on follow up exam is recommended. So of course I look up all this and find it could be a metastasis?  I can’t wait until November and emailed the radiation oncologist to look at it. Of course I will call the oncologist tomorrow but she really wasn’t too concerned. anybody ever see this wording on a report?  

Well another CT in the bag. Doc said go live your life and I’ll see you in November. 

Well another CT in the bag. Doc said go live your life and I’ll see you in November. 

Great news Barb. Sitting in chair for # 10 today. Lesion shrunk +\- 50% ,mediastinal nodes reported smaller , mild radiation scarring . Physically doing reasonably well. Looking forward to daughters wedding next month. Bonus as at diagnosis October 2019 that was not a “given”. 
 

Well another CT in the bag. Doc said go live your life and I’ll see you in November.