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Rower Michelle

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  1. Like
    Rower Michelle reacted to LUNGevityKristin for a blog entry, Let's Bend the Rules for All the Right Reasons   
    Let's Bend the Rules for All the Right Reasons
    By: Amanda Nerstad
     
     This pandemic has been hard on everyone. Covid-19 is scary to me, especially as a stage IV lung cancer patient. I have followed all of the rules. I mask up when I go out, I choose to stay home  as much as I can, I’m not visiting other homes, our family is not taking visitors in our home, we use grocery delivery services and we do our best to keep everyone healthy. 
               I’ve had to explain to my daughters why we are choosing not to attend parties of friends, visiting family, having sleepovers, etc like other people we know. I understand their risk of dying is different from mine. I have done my research, have facilitated virtual calls with lung cancer doctors about Covid-19 and I know I have a 33% risk of dying if I get Covid-19.  I have stayed quiet and followed the rules.
                     After being diagnosed with a terminal disease, I learned to notice the winks from God and realized that it is ok to bend the rules for all the right reasons. We took our girls out of school last year to celebrate their birthdays. We place our children’s schooling as a high priority, however we did take them horseback riding to celebrate my daughters special day....for all the right reasons. While attending virtual school, my daughters history essay was denied and recorded as “incomplete”, because it was not a two page essay. Instead she made a creative video as if she were standing on the stage of a Hamilton play.  She was rapping every word while giving facts dressed up like Paul Revere.  All this was done with a big smile on her face. My email response to her teacher was.... Sometimes it’s OK to bend the rules for all the right reasons.
                 Yesterday I saw a lung cancer friend post on Facebook that she was denied a covid vaccination shot.  At the same time, her husband was allowed to get the vaccine because he is a teacher and considered essential.  Although they had over 60 cancellations she was turned away. 
              So I am asking BOLDLY and unapologetically to every healthcare center and every Governor..... Give lung cancer patients access to a life-saving vaccine. Let’s change the guidelines, let’s bend the rules......FOR ALL THE RIGHT REASONS!
     
    Make your voice heard through the LUNGevity Action Network! Submit a comment using our template about why lung cancer patients should be prioritized for the vaccine >> https://action.lungevity.org/take-action-on-cdc-vaccine-distribution-plan/
  2. Like
    Rower Michelle reacted to Lisa Haines for a blog entry, Covid and me   
    This is story I did with LUNGevity - I was very honored to be given the opportunity to share my how Covid has changed my life, especially as a Lung Cancer patient.  I'm sure most of you can relate.   
    COVID and Me
    By Lisa Haines
    When I was diagnosed with Stage IV lung cancer in 2015, I was extremely sick and my prognosis was pretty grim. I decided then, with the time I had left, I was going to live each and every day to the fullest. I wanted to do all the things that my husband and I had always talked about doing when we retired, such as travel and spend more time with family and friends, while I was still healthy enough to do so.
    Luckily, I responded well to treatment and have since been stable and doing well. I have been able to do a lot of the things I decided I would do and crossed many things off my bucket list. In fact, I had planned to celebrate my 5-year Cancerversary in Vegas with family and friends in March 2020.
    Unfortunately, that’s when the COVID-19 pandemic began. The pandemic has really inhibited my mentality to “live each and every day to the fullest” and taken away my ability to do my bucket list items. I imagine this change in mentality is something that many people with late stage cancer are facing right now.
    As cancer survivors, we are an incredibly vulnerable population. It’s important for people to realize how significant the risks for lung cancer patients are. Many pre-existing diseases are risky, but many of us with lung cancer have damage to our lungs already or have had a surgery and only have one lung, making the risk of serious illness worse for us. A lot of people don’t seem to understand this.
    Worse, some people seem to think that because we are so vulnerable, we should just stay home until the vaccine is available. What they don’t understand is that we already have our life expectancy cut shorter than we ever expected. It feels like COVID is stealing more precious time from me in so many ways. It’s a near-impossible catch-22 that this virus has put us in: try to protect your health but also live at the same time.
    That’s why this pandemic has been really difficult for me. The hardest part is what the virus doesn’t allow you to do. Prior to March 2020, I spent about 20-30 hours a week babysitting my grandkids, who live close by. I would see my 86-year-old mother, who also lives nearby, often. I would visit my son, who lives out West, several times a year.  Once the virus hit, I stopped doing all of these things.
    I felt trapped in my house. As time went on, it was harder and harder to stay isolated. I would do video calls with my family, but it would just make me feel worse because it wasn’t the same. It became a quality of life issue for me. I am looking at my life in a shorter span to some degree, yet someone was telling me that I can’t see the people I cherish in the time I have left.
    Another added stress for me is that my husband is an essential worker and was still required to go into work each day. We of course took added precautious to ensure he wasn’t bringing home the virus, but there’s no way to be certain; there are just so many unknowns. I’m not sure what I would have done if he did get the virus. It’s really difficult to be in the same house and not touch things. All you can do is hope for the best and frequently hand wash.
    For me, managing the virus precautions while living with lung cancer ultimately became balancing living life and staying alive. I decided to talk to my doctor about the possibility of seeing my family again. He asked me many questions and ultimately, based on my responses, he was able to understand my need to be with them and gave me his blessing to do what I felt was safe for me. He explained that when COVID starts to affect our quality of life, it is important for lung cancer patients to make choices that they feel are best for them. I am lucky to be stable, off treatment, and not currently immunocompromised, so I decided it as best for me to see my family again. It was my choice to decide what I wanted; I made the choice to live my life.
    At first, I only saw my family outside and with masks. However, the day my youngest granddaughter cried because she didn’t recognize me, my heart broke. A week or two later, I started to go inside their home. I used extra sanitizer and washed my hands constantly. As I began to feel safer and the COVID case counts in our area went down, I resumed my normal life with them and go to their house on a regular basis. I consider it my second home. We do our best to take precautions, but I know I’m taking a risk. However, for me, quality of life wins out over COVID.   
    I think the best advice I can give for someone struggling is to try to keep as busy as possible. I have used the extra time to keep more involved with advocacy for lung cancer. I even became a LifeLine mentor. I have also been joining the Virtual Meetups; they offer great support and are super helpful for people who might not have family nearby and feel isolation.
    While things have improved since the spring, I am starting to worry about winter. Right now, we spend as much time outside as we can. I’m not sure what we’ll do when it gets colder and that’s no longer possible. I will very likely need to isolate again this winter and that’s scary and sad.
    Currently, I have 5 airline tickets that are waiting for me to use.  Every day I stay Stable I am hopeful that the time will come for me to be able to use them again.  I hope for a safe and effective treatment for Covid, so that it’s safe for us all to get back out again.  I look forward to the day that Covid is a bad  and distant memory for all.   It's not only stealing time, but as also taken far too many precious lives - such a devastating virus in so many ways.  
     
    About me:
    Lisa Haines is a Stage IV lung cancer survivor who lives in Northeastern Massachusetts with her husband and two Rescue Chiweenie Dogs.  She is Mom to two amazing adult sons, one living locally in MA and one living in CA.  She’s been blessed with two sweet granddaughters, Harper now 3 ½ and Hazel who turned 1 this summer.   Her grandchildren came into her life after her diagnosis and truly were a dream come true.  At the time of her diagnosis, she did not have any grandchildren, but being a “Nanni” was something she dreamed of for many years and they have added even more joy and love to her life.    They are now another huge inspiration in her cancer journey.     She plans to be here for many years to watch them both grow up. 
    Other than spending time with her granddaughters, family and friends, she also enjoy travel and can’t wait to be able to get back out to San Diego to see her son.   She enjoys supporting other lung cancer patients and is very active with LUNGevity. She is also a moderator for two other Lung Cancer Support Groups on FB.    Advocacy has become especially important to her and it’s something she wants to pursue long term.
  3. Like
    Rower Michelle reacted to LUNGevityKristin for a blog entry, Surviving Coronavirus as a Lung Cancer Survivor   
    With everyone on edge during the coronavirus pandemic, I wanted to share this story of a lung cancer survivor who has fully recovered from the virus.  
     
    Man who lost lung battling cancer survives coronavirus decade later
    https://bit.ly/39LM8Br
    BEAVER COUNTY, Pa. — A Pennsylvania man who lost a lung to cancer about a decade ago has survived another health battle -- this time, with the coronavirus.
    It started as what he assumed was just a cold, but when Richard Botti, 61, started to feel lung pain in early March, he thought his cancer had returned. It turned out to be COVID-19 instead.
    Because of his previous bout with cancer, he was at higher risk. His family told WPXI they got very concerned when his conditioned started to worsen.
    “It slowly got worse and he wasn’t getting out of bed,” said Vanessa Venezie, his daughter. “You immediately think the worst because of everything you’re seeing and reading.”
    He soon tested positive for the coronavirus and had to be hospitalized. However, he pulled through, spending 11 days at Heritage Valley Hospital hooked up to oxygen.
    Botti’s daughter wanted to share not all coronavirus outcomes are grim.
    “We’re just really happy and we want people to know there is hope for them,” Venezie said. “Stay focused on the positive. Do things that make you feel good. We can all get trapped in the negative.”
    Botti was taken back home by medics in an ambulance equipped to handle COVID-19 cases. He has to self-isolate in his room away from his family for two weeks.
    Watch video here: https://www.wpxi.com/news/top-stories/man-who-lost-lung-battling-cancer-survives-covid-19-decade-later/OAU5PCE2HFHEPBDVJFRDS5PMJ4/

  4. Like
    Rower Michelle reacted to Susan Cornett for a blog entry, 4 years!   
    Today marks 4 years of survival! By most standards, my path hasn't been as difficult as others. There have definitely been highs - when my hair grew back, my lashes grew in longer  - and lows - two recurrences and a secondary cancer diagnosis. But as I say often - I'M STILL HERE! I tell my story to anyone who will listen. People need to know that lung cancer doesn't have to be an automatic death sentence. Does it suck? Yes. Will it change your life? Definitely. But you move forward, one step at a time. Forward is forward ,no matter the speed.
    I am looking forward to the Breathe Deep Denton event in April. I enjoy visiting with the other survivors and bringing attention to this cause. I've also been asked to speak at a function in March so I'll be sharing my story again. The more the public understands lung cancer and all of its causes, the better our funding will be for research. 
    Most importantly, though, is this: I stumbled across this site one night when I was looking for answers. I have met wonderful friends - in person and online - here. Those friends have made this journey easier. Thank you, all. 
  5. Like
    Rower Michelle got a reaction from PaulaC for a blog entry, Managing Health Insurance Mayhem   
    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. 
     
  6. Like
    Rower Michelle reacted to LCSC Blog for a blog entry, "Come on down!"   
    Except I was not sitting in the audience for "The Price Is Right" when I heard my name called. Nor was I needing to guess the cost of my infusion with my treatment that day contingent on my guess not exceeding the "actual retail price." And neither were there any of "Barker's Beauties" to wave their hands and showcase what items I would be attempting to price right. No. There were only multiple oncology nurses standing in front of the Infusion Center's entry door calling out the names of the next patients lucky enough to begin their treatment. It wasn't exactly "Plinko," but once inside the Center, the fun, such as it is, really begins.
    At least that's the way the activity appeared to me. The preceding day was July 4th so the Center was closed forcing those Thursday patients to be rescheduled to either Wednesday or Friday. As a result, the waiting area was particularly full with patients, along with their family and friends, all of whom are encouraged to attend. In the midst of this crowd, I sat and waited. We hadn't exactly been assigned numbers, but we were assigned oncology nurses and therefore could only enter the Infusion Center with their assistance.
    Then, while all of us "waiters" looking at the entry door waiting for an oncology nurse to walk through and call our name, the door lock clicked open and out walked two oncology nurses. As soon as they cleared the door and entered the waiting area, they called out their respective patient's names (unfortunately not mine). Upon hearing their names, the two patients and nearly half a dozen of their supporters got up and moved eagerly toward the entry door. It reminded me of the beginning of "The Price Is Right" when three audience members' names are called in quick succession and implored to "Come On Down!" by George Gray (Johnny Olson, the original announcer, retired years ago) and officially become one of that day's contestants.
    However, once inside the Infusion Center, It's dead serious. Your life is at stake, maybe even at risk, depending upon your cancer/treatment, and at this point, you're not playing any more games (although occasionally, you may be guessing the price of things and wondering how it all gets calculated). So you slide into your Barcalounger, hold out your arm to have your barcoded wrist ban scanned and prepare for your hopefully, life-saving infusion, and don't smoke 'em, even if you got 'em.
    It's rare that you'll see your oncologist in the Center. Typically, they'll be seeing patients in examining rooms, performing surgery or rounding in local hospitals. But they're always a phone call away should the nurses need any additional instructions or clarification. Generally speaking, once inside the Center, all goes as anticipated for us patients: you're in, you're treated, you're out. And when you're out, new patients names are called and on and on it goes, just like "The Price Is Right," except the program doesn't end in an hour. And just like "The Price Is Right," where there are no shortage of audience members wanting to participate, at the Infusion Center, likewise, there seems not to be a shortage of patients wanting to be treated either. (Granted. it's not exactly the same thing, but you get my drift, I'm sure.)
    Cancer is not fun, nor funny, and an Infusion Center is not filled with anticipation of cash awards and magnificent trips. There is however, lots of empathy and understanding - from your support system and from staff as well. But it's the last place you want to be, unlike "The Price Is Right."
     
  7. Like
    Rower Michelle got a reaction from BridgetO for a blog entry, Managing Health Insurance Mayhem   
    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. 
     
  8. Like
    Rower Michelle got a reaction from Tom Galli for a blog entry, Managing Health Insurance Mayhem   
    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. 
     
  9. Like
    Rower Michelle reacted to Susan Cornett for a blog entry, Taking a page from Tom's book   
    Today I celebrate three years of survival! I am so happy to have found this community of people.  You all make this journey so much better.

  10. Like
    Rower Michelle reacted to Tom Galli for a blog entry, A Picture is Worth 15 Years   
    I'm the guy who paints a toenail for every year I live beyond my February 4, 2004 diagnosis day.  This year our toes are LUNGevity Blue to honor the foundation that is dedicated to changing outcomes for people with lung cancer through research, education and support.
    There are many people who've been instrumental in my survival and making a life after; none are more important than my loving wife -- Martha Galli. If I can live, so can you!
    Stay the course.
    Tom Galli
  11. Thanks
    Rower Michelle reacted to Tom Galli for a blog entry, Free and Invaluable   
    Using the words free and invaluable to characterize lung cancer medical care is a hard sell. I’ve seen so many scams promising this, that, and the other thing that deliver nothing more than a money pit.  So I was indeed skeptical when Dr. David S. Schrump introduced his National Cancer Institute Intramural cancer treatment program, at our April 2018 LUNGevity Summit, with the words “no cost to patients, including travel and lodging.”
    Why didn’t I know about this resource?  I’ve encountered so many newly diagnosed folks who had no or inadequate insurance and who had to forgo treatment because of financial concerns. Yet, there is a sophisticated, taxpayer funded, medical system that designs “unique to patient” protocols including surgery, radiation, chemotherapy, and newly emerging treatments. And, it is free! All patients at the NIH are on investigational protocols, including those who are receiving standard care, so that their tumor tissues, blood, etc can be used to develop new cancer therapies. Once a patient is enrolled onto a protocol, care is provided at no cost. There is no third party billing, deductables, etc.
    Then on the second summit day, I learned Dr. Schrump’s Surgical Oncology Team is developing unique vaccine-like immunotherapies using tumor material surgically removed from a patient — a tailored and individualized immunotherapy agent. In an ongoing vaccine study, Dr. Schrump’s team observed immune responses to lung cancer-associated proteins in 60% of patients; several responders have had unusually prolonged disease free-survivals, supporting further evaluation of the vaccine. Dr. Schrump hopes that personalized vaccines may one day be an alternative to adjuvant or post-surgical chemotherapy, the current standard of care. Much more work needs to be done to determine to feasibility and potential efficacy of this approach.
    Moreover, they are using aerosol delivery methods as alternatives to IV or oral administered drugs to increase the uptake of drugs into lung cancer cells, and “prime” them for attack by the immune system. Indeed, his presentation was filled with very innovative methods of attacking lung cancer with promising results.
    If you are an American and don’t have the financial resources for lung cancer treatment or if your medical team has run out of treatment ideas, contact the National Cancer Institute.  You don’t need a physician referral. Email [email protected], introduce yourself and your diagnosis stage and type and put your phone number in the email.  Free and invaluable may indeed be words appropriate to use in concert with lung cancer treatment.
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