Rower Michelle

Barb- everything about scans just sucks. The pre-anxiety, getting poked and then the results. Yuck. I've got a tiny node (like 4mm) that they've been watching since my 1st CT scan last year. Nothing's moving so they are not worried about it. @MBinOregon had some great advice, don't open the umbrella unless it's raining. Hang in there- any good spa appointments in your schedule? Prayers for you my friend...

Hi Jane, You sure did hit the nail on the head. The commercial coverage plans are more comprehensive than Medicare. I'll be in the same situation after my COBRA runs out. Ironically, the coverage standards spelled out in the Affordable Care Act, do not apply to the Federal programs. If you travel or seek care out of state, then you will need the Fee for Service traditional Medicare with parts A, B & D, then you will need a supplemental to cover the copays. If you don't mind working with in network benefits then the other option is to look at Medicare Advantage Plans. I have a few ideas on how to sort through the plan selection: you could call the American Cancer Society Help Line, Cancer Recovery Foundation, Gilda's Club's Cancer Community Support Line or AARP is likely to be a resource too. Worth a shot? https://www.cancer.net/navigating-cancer-care/financial-considerations/financial-resources Our financial advisors have a Medicare broker on staff to help make selections as well. The cancer clinic social worker might have some ideas as well. Let us know what you find out, it will help a lot of us. Michelle

Oh Bob- I’m so sorry about this news! We’re running a marathon here so let’s think of this as just a little sprint to push to the next mile. Maybe some high tech zapping is on the what’s next list. It’s time for the prayer warriors on the forum to ENGAGE for the founding member of the Durva Club. We’re all here for you.

Hi Barb, I found Manuka honey at Trader Joes and Whole Foods. It's also available on Amazon. It's from New Zeland,. Happy hunting...

Ron- So sorry to learn of your latest update, will be thinking of you as you go through the next steps. You guys in the Durva Club rock and roll.

Time off is well deserved Yoda Bob! The Durva Club is official, complete with its emerging play list! You’ve been a beacon of hope- thumbs up!

Good luck to ya Bob! Last one!!!

Hi Kleo- Good to hear from you. I think the DurvaClub is always open to you since, this all started as the twins, the Bob and Kleo show! Try some fresh lemon juice (2tsp) 1/8 of a tsp of stevia, and three drops of tobasco sauce into 33 oz of smart water. It’s a magic “ball” solution. 😂

Yowza Tomm. Hoping those thyroid meds kick in soon. Is the doc considering Metforim? There’s emerging research about its anti cancer properties as well as effectiveness in controlling blood sugar. Hang in there my friend!

Thank you Tom! I'm embarrassed by a copy/paste error! I've updated the blog to reflect on our collaborative effort. I appreciate the feedback to help our fellow warriors.

Blog Entry is the Teamwork of both Michelle and Tom Gali: After receiving a lung cancer diagnosis, the last issue, one would expect is problems with health insurance. While it’s unusual to have a claim fully denied, delays that effect diagnostics or treatment are quite common. Here are my 10 tips for dealing with health insurance problems. 1. Get your companies Human Resources staff engaged. Find out who has responsibility for claim payment. If it’s the employer, then they are self-insured and typically have an insurance advocate to fight the battles on your behalf. Get them in the fight. If the health insurance company pays the claim, expect difficulty in authorization and payment. Read your policy about appeals. Every determination that denies or limits care can be appealed. For example, it’s possible to have a non-network provider paid at the in-network rates for a specialty physician. Be assertive, do not take the first “no”. Appeal, appeal and appeal again! 2. Realize each state has an office that regulates insurance. Find out their email address and provide copies of each claim to the office for “information and action as appropriate.” If you need them to act, they will have a ready record of your case on file. 3. Schedule a face to facemeeting with cancer provider’s financial team.Understand how they process insurance claim submittals. Who does what to whom and who is in charge. Get names, phone numbers and email addresses for key people in the claims department. Sometimes providers have a nurse who manages pre-certification requests. Get to know this nurse. Call or email this nurse first if insurance does not pre-approve a diagnostic or procedure. Insurance companies have definitive rules about receiving medical records. Sometimes the lack of a record becomes the log-jam. 4. Get to know the healthcare provider’s patient advocate.It’s important to establish a relationship with this office. They know how to work the health system bureaucracy. 5.Don’t accept “I’m waiting for a call back” as an answer.You will need to be assertive as the squeaky wheel gets the grease. Use a “five-why” response technique. Ask “why” the wait, then follow with another “why” question and another and so on. Provider or insurance company bureaucracy is their problem, not yours. You are paying for it to work efficiently. When it does not, they owe you and answer as to why not. 6. Do not sign any documents at the health system requesting foran “advance or estimated payment” until the insurance issues have been sorted out. Lung cancer treatment is expensive, you do not want to be on the financial hook for treatment that the insurance company is supposed to pay for as part of the benefit design. Sometimes there is a “step therapy” or pharmacy formulary requiring a treatment regimen be tried first. Step therapy can also be appealed through a “peer to peer” conversation with your doctor. 7. Create a log and document everything. When discussing your claim with an insurance company record everything. Record the claim number, date of service, date of claim, time of your telephone conversation and first and last name of each person you speak with. You may not actually be speaking to a member of the insurance company, but one of their “specialty care” vendors. It’s important to know who all the players are. Sometimes vendors do not follow the insurance company rules. 8. Ask the insurance company to assign a medical case manager. This is typically a nurse that can help navigate the health insurance system. Insurance companies often have free phone resources for cancer patients such as mental health counselors, dietitians and physical therapists. Find out what services are available since they are not typically advertised in benefit brochures. 9. Pay attention to your mail. You’ll soon receive a deluge of Explanation of Benefits (EOB) forms; they are all different and are confusing. Put someone in charge managing your EOBs. Create a log recording the date of treatment, the provider, the claim number, amount paid and amount denied. Read and understand the numeric codes explaining reasons for payment or denial. Sometimes, insurance will issue a “partial benefit” payment or apply financial penalties. This information is usually buried on the EOB. Do not pay any provider bills until the EOB has been received. Hospital billing errors are frequent. 10. Stay calm. Every problem has a solution. When discussing your problem and you get a techno-speak response, ask for a plain English explanation. Be ready to interrupt (it’s not rude if you don’t understand!) Save your energy for getting well.

Such great news to see The Durva Club kicking butt!

HOORAY for you Tomm!!! You gave that cancer an eviction notice! YAHOOEE! All that hard work paid off!!! Here’s to your Hippie Protocol!!!!!

Hi Tomm- Thanks so much for asking! I really appreciate our family here, more than you will ever know. Most of the other ALKs are over on FB, which I am not a member (long story). Overall, I’m doing pretty well thanks to the targeted therapy, now I’m in “the countdown” for the next scan on 7-23. A $5 Starbucks gift card goes a long way with the scheduler as I only have to wait one day for the result. Evidently bribery works outside of NJ! Oh- another thing I learned in IAC this week, for cancer patients the ideal Vitamin D level is between 40-50. Evidently there were some NIH studies about this. Who knew! I’ve also ditched my selenium tablets in favor of 3 Brazil nuts a day. The Integrative Team we saw (4 hour appointment with nurses, medical students and attending, pays to be a mutant I guess!!) was really big on Food as Medicine so I can spend less money on supplements and more on acupuncture/Message instead. I’ll have blood work in two months to re-evaluate. Will keep you posted! Michelle

Hey Tomm- FYI I just met with my new hippie doctor- had to drive all the way up to Iowa City- yeah the mid westerners like their windshield time. I was familiar with Meyers Mix- the doctor told me that the blood levels for B-6 need to be carefully monitored as higher doses of B vitamins can cause neuropathy. This was news to us. Thought I wouldn’t pass along. Glad to hear you’re doing well! Michelle

Hey there Jersey Girl! Great to hear from you! The other Jersey Girl is probably on the boardwalk enjoying a slice of pie! All is well here on my targeted therapy (as Bob says we’re as good as our last scan). I’m up next at the end of this month. Heading home to see my parents in Bloomfield next month, San Juan Island, WA in September, then Maine in October/November Sounds like you’ve been a real trouper through all of this. The anxiety is something we all have to live with. I have replaced the “what if” scenario with “what’s next”. Immune therapy doesn’t work for mutants (yet) so for now we take those happy little pills and carry on. So glad you’re keeping your spirits up! Michelle

Good luck on Tuesday Barb! It’s so great to see the Durva peeps doing well!

Wow! That’s wonderful news! Those inhibitors are really miraculous little suckers!

Thanks Tomm! If you Google June 2019 ASCO Abstracts you will get a home page with a searchable database. It’s a really useful search tool. Lung cancer is getting a lot of attention due to the emerging science. Let us know if you find anything of interest! 😀

I’m willing to sell tickets to that show down tomorrow! Anyway, I’m looking at the June 2019 American Society of Oncology Association. (ASCO) abstracts. It appears as if your medical team is humming along with the new chemo immunotherapy protocol. Typically administered when there is no PDL-1 or targeted mutation. Early studies suggest good results in PFS. Ask the doc to show you which abstract is most applicable and have them provide you with a copy. Sounds like this is going to be worth it in the long run. Good luck-lock and load.

Definitely ask about the full panel biomarker. What if you had the rare ROS-1?

Welcome Home Kleo! So glad to hear from you, however, sorry to learn about this update. You’ve been such an inspiration to me with steadfast spunk and determination. We’re all here for you. As Eagle says- prayer works. So here we go- a worldwide prayer from this circle of your family. Sending a big hug. Michelle

Run like a butterfly sting like a 🐝! That’s awesome!

Wow Charles, that is really amazing! What does the onc think? Any changes to the treatment plan? Keep fighting!

Oh boy. A new set of Durva twins! Go Barb and Tomm!