Rower Michelle

Rosann, Just finished my latest round of retail therapy--- Lands End was having a 60% off sale.....

That sucker sounds dead to me! The low SUV is most likely inflammation and scarring from the radiation you had. Your doc hit it with a motherload of radiation, so there's always some scarring as a result. I think you can start walking on sunshine!

Ditto. I will not go quietly! We really need to make some noise, all year round!

How do it go Barb?? We all have walked in your shoes....

Congrats on joining the Done with Durva group! That’s fantastic, I remember your early posts and girl you’ve come a long way! Keep on the LDN at the pain clinic, they will definitely know about it! Rock and roll!!!!

Thank you Judy. I’m a poster child for comprehensive biomarker studies in the never smoker population, it was a hard way to lean there are two ALK tests. The initial ALK FISH test wasn’t sensitive enough to detect since the Foundation One results indicated a low tumor mutation burden. I’m so grateful my oncologist kept digging.

When I was discharged from Hospital A, I was told 48 hours later I had, "adenoma carcinoma, lung primary type". I really didn't know what the implications of that was and certainly wasn't told about biomarker testing by the pulmonologist. It took about a week for me to see an oncologist at the only NCI in my State. Upon the first visit, the oncologist said I was EGFR, ROS1 negative and ALK indeterminate with zero PDL-1. I had no idea what he was talking about, was still in shock but wrote it down. When I asked about prognosis, it was grim, six months to live. My only response was "what?!", which then changed to about 12 months. I didn't like that answer either and still said "what?!" which then the doctor said with treatment maybe 24 months. My husband was crushed, my sister was on a girls trip in Miami and I didn't dare tell my parents. I was asked to sign some paperwork accepting financial responsibility for up to $5600 for some type of special testing. I remember thinking, well if we have to pay for this, it will have to come out of our savings account and I didn't hesitate to sign this waiver even though I didn't know what it was really for. With a Stage IV diagnosis, I wasn't sure that I wanted chemo with such a grim prognosis. I was very symptomatic, with trace plural effusion and a worsening cough. I hadn't slept through the night in about a month, wasn't able to have a conversation either. I had to write everything down on a pad to communicate. Somehow, my doctor convinced me that I would feel better if I had a dose of the triplet while we waiting for "these tests" to come back which was expected to take up to four weeks. I received a B-12 shot and started folic acid supplements and had to wait one week before starting the triplet. The health insurance company denied the treatment plan stating "chemo was a matter of convenience". So here I am fighting the insurance company noting the irony of having run health insurance appeals in previous role. Two weeks after my initial cancer diagnosis, I had one dose of the triplet and a messy port installation the next day. My symptoms did not improve, the cough worsened and I started opiates. Evidently I was allergic to something in the chemo and part of my face turned purple. I broke a rib from the incessant coughing fits. It was a waiting game at this point, but wasn't sure what we were waiting for. Three weeks after my first visit with the oncologist, we received a call in the late afternoon asking if we could come in to see the oncologist before office hours the next day. It was something like 7:30am. We were not told why we needed to come in person, however, we figured at this point the news couldn't possibly get any worse. I was scheduled for a second dose of the triplet later in the week which I was dreading because I developed an infection from the messy port install. When we sat down with the doctor, he apologized for bringing us in so early. He said my tests came back for the ALK mutation. His face is consistently expressionless. I had to ask, is that good news or bad news. His response is still me today, "its great news". My next question was how does this change my prognosis- he said we were now talking about years instead of months. The insurance company made a rare move and approved targeted therapy that day. I picked up the huge bottle from the hospital pharmacy and it sat on my kitchen counter for three days until my nurse chemo teaching visit. When we arrived for the appointment the nurse educator, she had never prescribed the therapy and we were in uncharted territory. I had found a number of sources via Dr Google and had more information than she did. I didn't hesitate to take the first dose of targeted therapy that evening, almost five weeks after receiving this diagnosis. Within the hour my cough disappeared, that was 23 months ago. I wish the medical team had done a better job of explaining what biomarker testing was all about. It could have saved us so much grief. When the biomarker testing was denied by the health insurance company I requested medical records for the appeal. It was only then that I discovered my oncologist strongly suspected I had the ALK mutation yet he didn't say a word about it to us. Played it very close to the vest. I was mad for only a few seconds because in further reading, I could see the doctor was just as destroyed as we were. The health insurance appeals process was terrible, I exhausted the entire appeal process, with the final determination having been made by a board certified INTERNAL MEDICINE physician. Evidently, "there was no evidence of a mutation" and the tests "were not medically necessary". I don't think the physician reviewer read past the first note. Foundation One called me and offered a "wonderful patient discount" and asked for payment of $3500. I told them to get lost, I wasn't paying them a dime. Never heard from them again so to this day I don't know if the testing ever got paid for. Waiting four weeks for biomarker testing in my case was a horrible experience, I can only hope that in the future the process can be expedited.

Outstanding news!!!! Go Barb!!!

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.

That’s no joke. Out of curiosity, who is the approval company? Evicore???

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.....

Hey Barb, Good to hear from you? What test got denied? Might help to know in developing a battle plan. Michelle

Hi Durva Club Members! If you have a minute please send a warm welcome over in the Intro Section to Jim (JMP from California). Another Durva for your family here. Hope you all are hanging in. Thanks! Michelle

Great summary that landed just in time! My Uncle was diagnosed with lung cancer this week (pathology pending). Lou was kind enough to send me a sneak preview. It was invaluable for my Aunt who is an awesome caretaker. Love you guys!

Hey Barb, Well that is good news. It’s never a real victory lap for us as there always seems to be something. Generally, I’m doing fine. Scans are scheduled for August 5th, until then it’s business as usual. I’m recovering from an overuse knee injury (thank you COVID Stay at Home Order), age and inhibitors don’t mix. My last set of labs turned up a little bit of anemia. Not sure if it’s a long term side effect of the targeted therapy or the massive Advil to treat the knee??? Hoping it resolves with the iron supplements (another pill!!). Today the dreaded disability insurance paperwork arrived. I knew it would be coming as I’m coming up on two years this September. There’s a medical records request and functional assessment due in 60 days. I despise insurance companies. I would expect having a Stage IV diagnosis should be hassle free but who knows. I’m really grateful that I’m doing very well. Can’t wait to get through this pandemic and back to leisure travel! Michelle

Hi Barb, I hope this didn’t interrupt your weekend. I stopped looking things up from the CT report about 6-8 months ago. I go by the rule if the onc isn’t worried than I won’t worry. Easier said than done. For about a year the onc disagreed with the radiologist over a need for radiation, onc was right. He had more experience with my “rare” cancer. I had cancer on my spine and similar words appear in my CT scan which doc attributes to a combination of genetics and age. Here’s to growing old. Keep us posted! Michelle

Hooray for you and those Bay Gulls! Fly, be free! Carry on!

Hi Barb Yeah, I really think we know where you’re coming from, seeing is believing in this group. Sounds like you’re doing all the right things. If you have to go to the mattresses, call your State AG or Senator. That’s a headache the insurance company doesn’t want especially about a vendor. Keep making noise! Michelle

Hey ladies, JG checking in here. Polly probably a good idea to get a second opinion from an expert in lung cancer (most of us see general oncologists). You can start by contacting the help line at the Go2Foundation or Lungevity. I know that Go2 maintains a list of regional experts. In your neck of the woods the doc will either be affiliated with either Memorial Sloan or Mass General. I understand Mass General is offering video appointments. Let us know how it works out. Michelle

Hi Rosann, So glad to hear that you’re doing well! Sorry about the weight gain, we all get that, happy doctors who obviously can’t appreciate our wardrobe crisis! Aches and pains seem to come with the territory, totally sucks. You might want to ask about some anti inflammatory supplements such as fish oil-curcumin combo or the bromelian qlucosamine chondroitin cocktail. This super cute t-shirt dress arrived today- check it out: https://www.amazon.com/dp/B071H6MTLS/ref=cm_sw_r_em_api_i_L2X0Eb5G4E1WR Its very flattering & true to size. Happy shopping! Michelle

Hello Durva Club Members- If you have any time, please give a warm shout out to your newest member in Canada, Lindsay under the Introduction page, just joined today. I'm sure you guys will make her feel welcome! Michelle

Yep. My family is over the river in NNJ, someone set the 9-11 Memorial on fire yesterday putting the entire neighborhood at risk. Homeowners jumped in dig firebreaks until the FD arrived. Total madness in the burbs too! Be sure to ask about the biomarker results. It could help determine what the next course of treatment will be.

Hi Polly, Totally sucks all around. I can’t remember did they do a biomarker test when you were diagnosed? Hang in there, keep fighting. Does having the antibodies to COVID give you any peace of mind? Michelle

I’m so sorry for your loss. Our condolences to you and your family. Thank you for being such a wonderful contributor to this group, know that we will be here for you going forward. Michelle

No beaches here in KS but we WILL head out to one of the “lakes” and camp out in some lawn chairs to celebrate Barb’s crossing of the Durva finish line! Carry on Barb!