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Curt

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  1. Like
    Curt reacted to Rower Michelle in Mom newly diagnosed with Stage IV NSCLC   
    Hello- welcome to your new family.  I’m one of those Stage IV healthy people.  It’s more common than any of us could have ever imagined.   You might want to check out Diana Lindsay’s “Something more than Hope”.  She shares her survival story as an EGFR mutant which is so inspiring.  Stephen J Gould wrote a very powerful essay- The Mean Isn’t the Message.   It’s so on point!   The internet is a scary place & the data points do not account or reflect the recent advances in LC treatment  
    Another terrific resource is Anti-Cancer Living.  Lots of great information in there too.  
    In addition, Facebook has some great support for EGFR & the Exon 20.   
    Knowledge is power & hope is the driver on this road.  There’s so much hope on the horizon with all these clinical trials.  Stay strong.  We’re here for you! 
    Michelle 
  2. Like
    Curt reacted to LexieCat in Mom newly diagnosed with Stage IV NSCLC   
    Hi there, and welcome.
    I'm sorry about your mom's diagnosis.  Unfortunately, being "healthy" doesn't prevent a person from developing lung cancer, but it really does provide an advantage when it comes to fighting it.  It's great that she came through the brain surgery so well.  
    We have quite a few members here who have long-term survival after a Stage IV diagnosis, so there's plenty of reason to hope.  Others here will have more input on the chemo/immunotherapy/clinical trials issues--I was one of the lucky Stage I people, so surgery is the only treatment I have personal experience with.  But the others will be along soon.
    Glad you found us--this is a great place for information and support.
  3. Like
    Curt got a reaction from Rower Michelle in Well-meaning suggestions   
    I like that suggestion Steff.  Most people who want to be helpful have no idea how to be.  Especially with illness.  They want to help but feel powerless.  Being vocal about how they can help is great, and it weeds out the people who really aren’t trying to help.  Cooking, offering rides and CLEANING for someone is way more helpful.  When my father was sick my step mom would get so upset because people would always want to visit but it would just make more work for her having to care for my dad AND entertain the guests AND have to listen to them tell her what they should be doing differently   It really started to isolate them.  
    How about a suggestion form?  When someone starts to give unsolicited advice stop them and hand them a lengthy suggestion form that they can fill out with all the information they’ve found, why they think it’s a good approach and whatever supporting research they’ve found.  Tell them you really want to know more about their suggestion and this is the best way you’ve found to keep track of them.  Anyone who actually fills it out may actually have a good suggestion.    
    How about put all your daily and weekly things to do on pieces of paper in a box.  Anyone who wants to offer a suggestion needs to draw a task from the box first.  You can call it a suggestion box.  They can put their suggestion in the box after they pull your suggestions on how they can help out.    
    When my father was sick my step mom, my brother and I provided all of his care   I felt like everyone else in the world were inconsiderate A holes who didn’t know what we were going through   Looking back on it now I realize that they really didn’t know what we were going through, but that wasn’t their fault.  They were coming from a good place, just not executing it well.
    Hang in there.    
     
  4. Haha
    Curt reacted to Steff in Getting over the hump   
    This is me trying to get over the "hump" into Thursday!  Anyone else feeling this way today?!

  5. Like
    Curt reacted to VegasBuckeye in I am new   
    I am so sorry it took me this long to reply. 
    I had the spine bone biopsy (at a hospital here in Las Vegas) and then followed up with an EBUS (performed at UCSF Hospital) biopsy on my lungs. 
    Both biopsies were negative for cancer.  
    They diagnosed me with Sarcoidosis. I don't require any treatment. As you might recall, I was asymptomatic. It appears I am one of the rare cases (5% per my oncologist) where a PET SCAN shows a person likely to have stage 4 cancer and then doesn't. Obviously, my family and I are overjoyed, but I felt bad after the diagnosis coming on this site and spreading my good news (especially considering what other folks are going through). I didn't want to appear to be spiking the football, so to speak. 
    Anyway, I want to SINCERELY thank all of you for your support during my darkest hours. It meant a lot. You guys kept me positive when no one else could even make me smile. I will forever remember your kindness and compassion. 
     
  6. Like
    Curt reacted to Steff in Well-meaning suggestions   
    AND you might even get a great meal out of it! lol
  7. Like
    Curt reacted to LexieCat in Well-meaning suggestions   
    What a terrific suggestion, Steff!  I love it!  Diversion often is much more effective than opposition.
  8. Like
    Curt reacted to Steff in Well-meaning suggestions   
    Hi Michelle!
    Glad you found us and glad to hear about your husband's treatment plan.  My mom's treatment plan for her most recent LC recurrence was chemo (alimta + carbo) and Keytruda.  She did 6 sessions of the combo and then went on to Keytruda only.  Her treatment lasted a little over 1 year and she is now on a treatment break for the foreseeable future due to side effects and that she has no evidence of active disease.  Feel free to check out my posts about my mom's treatment journey - it may provide some perspective on what your husband may have to deal with as far as side effects, etc.  You can find it  here.
    As far as dealing with well meaning friends and family, my friend Danielle has a great suggestion that she uses when overwhelmed by all of the well meaning....I hope I can convey it here.  When someone would come up and say "I'm sorry to hear about your mom, I've read that taking ____________/has she tried ___________/etc, etc.  Danielle would respond with "Thanks for the suggestion, we need help with dinner on Thursday, can you bring over dinner? -or- my mom needs a ride to her appointment next week, can you take her?  She not only was able to quickly change the subject, but also get help with the daily needs of her mom.  No one seemed offended and the well-meaning person was actually able to be helpful.  Maybe this can help in your situation.
    Take care,
    Steff
  9. Like
    Curt reacted to Rower Michelle in Well-meaning suggestions   
    Hello Michelle-
    I was also diagnosed at Stage IV NSCLC.  The first few months are really tough.  My friends & family felt so overwhelmed & powerless when we told them about my cancer.  They were just as freaked out as we were; desperate to help in anyway they could.  I’m six months into this & some days I think I’m coping better than my friends. They can’t hide the shattered look on their face when we get together.  I set out every day & try to do something fun.  Eventually people will take the cue from you but at the end of the day your energy stays with your family.   This is part of the initial diagnosis and it will settle down.  
    I accepted all gifts graciously & gratefully  then threw out the weird stuff (after consulting with my pharmacist). 
    Michelle
  10. Like
    Curt reacted to LexieCat in Well-meaning suggestions   
    Hi, Michelle, and welcome.
    I'm sorry about your husband's diagnosis.  The good news is that we have several people here on the forums doing VERY well with Keytruda--it really can improve the response.
    My cancer was Stage I, so I had to deal only with surgery.  But I do know what you mean about the "well-meaning suggestions" of family/friends.  I'd suggest you simply smile and assure them of the great confidence you have in your medical team, who are using the very latest/greatest treatment protocol (true!).  And if they continue to bombard you with suggestions, you can tell them that while you appreciate that they care, it isn't helpful for you to have to keep explaining your treatment decisions.  If their feelings are wounded, oh well--they will get over it.  Seriously--you guys need your energy to deal with what's already on your plate and sometimes you do have to be firm to protect your own sanity--this is a tough enough ordeal without having to placate everyone else.  My bet, though, is that most of them will back off.  Remember, this is very new, and a scary shock for them, too.  If you project confidence in your medical team, it should help them accept that your husband is in good hands.
    Hang in there.  Glad you found us--this is a great place for information and support.
  11. Like
    Curt got a reaction from Rower Michelle in SCLC patients, how aggresive is your medical team?   
    I haven’t had to have cancer treatment beyond surgery.  Some may consider removing a third of your lung aggressive.  It could be considered aggresive that I went ahead with the surgery not knowing for sure if it was cancer.  My father was diagnosed with soft tissue sarcoma in his lower left leg when he was thirty, over 30 years ago.  His doctor recommended amputation below the knee.  He required no treatment after that.  His brother was diagnosed with the same cancer a few years later.  His doctors opted for treatment instead of amputation because his tumor was above the knee.  He went through that treatment for 10 years and it destroyed his kidneys and was a very difficult 10 years.  He is now on dialysis, though he has been cancer free for 7 years.  Arguments could be made for one or the other being too aggressive or not aggressive enough   
    Sometime “aggressive” needs to be defined specific to the patient and the potential outcome.  I think I would pursue a cure as aggressively as I could, and I would expect my doctors to do the same.   If a cure wasn’t an option and the goal was prolonging life I would say the side affects of aggressive treatment versus how long my life would be prolonged would have to be considered.  My father confronted that with his lung cancer battle, 30 years after his soft tissue sarcoma amputation.  He was aggressive with treatment until the treatment was doing more harm then good.   
    A big factor in the level of aggressiveness with cancer treatment comes down to the persons ability to withstand the treatment.  A person’s prognosis from treatment is dependent on that person’s ability to withstand the treatments and avoid associated complications.  Does your body five in to the treatment before the cancer does?  Many times people need to stop treatment because of adverse side affects.  Lance Armstrong wrote about this in his book.  He felt that he was cured because he was in a physical condition to withstand a very aggressive treatment approach that others wouldn’t have been able to tolerate.  
  12. Like
    Curt reacted to Tom Galli in SCLC patients, how aggresive is your medical team?   
    Robert,
    These would be some examples of aggressive treatment that come to my mine:
    Pneumonectomy or lobectomy when proximate lymph nodes are shown to have metastatic disease (surgery also removes nodes) Treating primary and distant metastatic tumors (Stage IV disease) with curative precision radiation Surgery after first line conventional radiation and chemotherapy Surgery to address recurrence after first line conventional radiation and chemotherapy Pneumonectomy when tumor is close to or intrudes into bronchus Double lobectomy of a tumor in each lung (one lobe removed from each lung) [Stage IV disease] Precision radiation for recurrence in or near the area covered by first line conventional radiation Stay the course.
    Tom
  13. Thanks
    Curt reacted to Robert Macaulay in SCLC patients, how aggresive is your medical team?   
    Curt
    Think you summed it up with this statement
    A big factor in the level of aggressiveness with cancer treatment comes down to the persons ability to withstand the treatment.  A person’s prognosis from treatment is dependent on that person’s ability to withstand the treatments and avoid associated complications
  14. Like
    Curt got a reaction from Rower Michelle in Boston Hospitals - deciding where to go   
    Hi JCM.  I’m sorry to hear about your diagnosis.  I don’t have any direct experience with Boston Hospitals (I’m from NY) or any direct knowledge of Beth Israel.  Having a good relarionahip with your oncologist is important.  It is also helpful if you educate yourself on what treatment options are available to you.  You didn’t mention what kind of lung cancer you have but there are different kinds and different treatments for each.  You want to make sure your oncologist is familiar with all treatment options for your specific cancer; chemo, radiation, immunotherapy and less likely surgery.  A  lot of people look for Hospitals associated with the National Cancer Institute.  They tend to have access to the latest research and treatments.  The Dana Farber/Harvard Cancer Center is one in that area.  You should also get yourself a good pulmonologist in addition to the oncologist.  They specialize in the lungs and will have a different perspective on the available treatments and how they will affect your lung function long term.    
    A cancer diagnosis is a complete shock but you’ve found a good place for information and support here.  There have been a ton of advancements in cancer research and treatments in the last few years.   Check back here with your questions or just to let us know how you are doing.
    Go Yankees!  
  15. Like
    Curt got a reaction from Robert Macaulay in SCLC patients, how aggresive is your medical team?   
    I haven’t had to have cancer treatment beyond surgery.  Some may consider removing a third of your lung aggressive.  It could be considered aggresive that I went ahead with the surgery not knowing for sure if it was cancer.  My father was diagnosed with soft tissue sarcoma in his lower left leg when he was thirty, over 30 years ago.  His doctor recommended amputation below the knee.  He required no treatment after that.  His brother was diagnosed with the same cancer a few years later.  His doctors opted for treatment instead of amputation because his tumor was above the knee.  He went through that treatment for 10 years and it destroyed his kidneys and was a very difficult 10 years.  He is now on dialysis, though he has been cancer free for 7 years.  Arguments could be made for one or the other being too aggressive or not aggressive enough   
    Sometime “aggressive” needs to be defined specific to the patient and the potential outcome.  I think I would pursue a cure as aggressively as I could, and I would expect my doctors to do the same.   If a cure wasn’t an option and the goal was prolonging life I would say the side affects of aggressive treatment versus how long my life would be prolonged would have to be considered.  My father confronted that with his lung cancer battle, 30 years after his soft tissue sarcoma amputation.  He was aggressive with treatment until the treatment was doing more harm then good.   
    A big factor in the level of aggressiveness with cancer treatment comes down to the persons ability to withstand the treatment.  A person’s prognosis from treatment is dependent on that person’s ability to withstand the treatments and avoid associated complications.  Does your body five in to the treatment before the cancer does?  Many times people need to stop treatment because of adverse side affects.  Lance Armstrong wrote about this in his book.  He felt that he was cured because he was in a physical condition to withstand a very aggressive treatment approach that others wouldn’t have been able to tolerate.  
  16. Like
    Curt reacted to Rower Michelle in 3 Week Lobectomy Follow Up Tomorrow   
    My two cents on the biomarker tests: it saved my life.  When the local hospital test was EGFR negative, PDL-1 0% & ALK was indeterminate my onc sent the biopsy to Foundation One.  FO used a different test & concluded what the onc suspected from day one- ALK Positive.  
    So enter the insurance company.  They denied the FO studies three times for different reasons.  I just got the results back from the External Review Organization last night in the mail.  Much to my surprise the ERO upheld the insurance company’s determination that the FO testing was not medically necessary.  Totally unbelievable.  The review determination was completed by a doc board certified in Internal Medicine with a speciality in medical oncology. So much for the peer review process.  LOL. 
    The ERO found the local testing to be sufficient. I would have been in Shel’s position & gotten a lot of chemo at over $100k a pop.   All of that instead of a $6k test.  
    What I learned:
    1. Ensure the ordering provider precertifies the FO testing (mine dropped the ball)
    2. Apply for FO financial assistance straight away. 
    3.  Reapply for financial assistance at the time of the 1st insurance denial (they will increase the support) 
    I was totally prepared to pay out of pocket & was fortunate to get 100% patient assistance.
    This was a six month hassle so be prepared to make time for all the administrative hoops.  
    We’re lucky to have access to a NCI but it doesn’t seem as if the insurance companies can keep up with the science as their medical necessity criteria is not current & the doctor’s they employ don’t understand the emerging treatment models.   Onward! 
     
  17. Like
    Curt reacted to ColleenRae in 3 Week Lobectomy Follow Up Tomorrow   
    I'm with Paula - nothing to add - but I have definitely learned a lot from the posts. Just excellent. Very helpful and clarifying. Thanks to all of you.
  18. Like
    Curt reacted to BridgetO in 3 Week Lobectomy Follow Up Tomorrow   
    Curt,  I agree that the germline genetic testing is a good idea, especially for people who have significant family histories of lung (or any!) cancer, or who, like me, have multiple primaries. Besides being helpful to individuals, it would help to clarifiy the status of specific Variants of Unknown Significance--  statistically is the variant significantly associated with a specific cancer diagnosis or not? For this to be determined, a lot of people need to be tested.
  19. Like
    Curt got a reaction from ColleenRae in 3 Week Lobectomy Follow Up Tomorrow   
    Lexi my situation may be unique in terms of genetic bio markers.  My grandmother, father and four of his eight siblings all had lung cancer.  All but one of my fathers siblings who had lung cancer have passed so they can’t be genetically tested.  My grand mother was diagnosed in her 80’s treated with radiation and passed in her 90’s of unrelated illness. The one aunt who is alive found her lung cancer after my dad was diagnosed and went for a screening.  She had a lobectomy, Stage 1, and required no follow up treatment.  That is five out of nine siblings and those mother who had lung cancer.  My grandmothers mother died young.  We are trying to get her medical history but it appears that she passed from cancer.  Three of them also had soft tissue sarcomas.  Throughout we’ve been told there is no hereditary aspect to the type of cancer we’ve all had.  That it was caused because everyone smoked.  I’ve never smoked.  A lot of people say second hand smoke but my parents were divorced and I didn’t live with my father.  I have a cousin who’s never smoked who is tracking multiple lung nodules.  I have three kids, a brother, 23 first cousins and their kids.  I suppose that could all be coincidence but I’m not buying it.  I’m tracking the genetic aspect of this as far as I can go. I want my family members (and everyone else’s) to be able to take a test for specific biomarkers, same as you can with breast cancer.  If they are positive for those markers I want them to be able to get periodic screenings, same as breast cancer.  
    In terms of my own potential treatment I was told that biomarker testing was standard procedure (I’ve been going to Sloane Kettering) and that knowing if there are any mutations or biomarkers tells them the best course of action for recurrent lung cancer of that type. I’ve already been told how I will be treated in the event of a recurrence.  I completely understand not wanting to think about that with such a low probability of it happening, but that’s not how I’m wired.  I want to have a plan, a back up plan and a back up to my back up plan.  
    I also think that biomarker testing gives researchers better information to research correlating recurrence and affective treatments.  I donated whatever samples of my tumor that are left after testing to whatever studies need it.
     
     
     
     
  20. Like
    Curt got a reaction from ColleenRae in 3 Week Lobectomy Follow Up Tomorrow   
    Hi Colleen.  Lexi always has great advice and encouragement.  Being active on this board has been a welcome distraction for me during my recovery and everyone here has been very supportive.   
    Is it an option to request bio marker testing now?  Hospitals sometimes save samples.  I only ask because they can tell a lot with that information and on the 8-9% chance it returns you will have a treatment plan ready.  If the hospital you had the surgery at doesn’t offer it there are labs that will do it for you. My guess is insurance would pay for it if your doctor requested it.  If the surgeon doesn’t want to it may be worth following up with a pulmonologist or an oncologist.  My surgeon said I don’t need any follow up treatment but I am seeing a genetic oncologist just so I can hear it from them.  I do run the risk of them recommending unnecessary treatments, but I want to a second opinion anyway.  A lung cancer “team” usually consists of your general care physician, pulmonologist, oncologist (if treatment is required) and a surgeon (if surgery is an option).  If your insurance will pay for it I don’t think it would hurt to consult all of them.  A pulmonologist may be helpful with your chest pains and difficulty breathing you mentioned on your other post.  
  21. Like
    Curt got a reaction from PaulaC in 3 Week Lobectomy Follow Up Tomorrow   
    Wow Bridget.  That’s quite the trifecta.  I am probably mixing up up the terminology.  I have already gotten the biomarker testing back on the tumor.  I have an EGFR exon 19 mutation.  I don’t get the germline genetic testing back for another couple of weeks.  The surgeon has already told me that the particular somatic mutation I have is not currently associated with any genetic predisposition to cancer.  Either my family is the unluckiest family on earth or there is something in our genetics predisposing us to cancer, lung in particular but also soft tissue sarcomas.  The research on inherited genetic mutations in lung cancer appears to be limited.  I found a study by the Addarrio Foundation focused on the T790 mutation that finished in January.  Results have not been released yet.  The research I’ve found is limited compared to research on inherited predisposition for other cancers like breast cancer.  I think both tests should be a standard for all lung cancer patients.  Yes it’s expensive testing to do, but having a better understanding of it will go a long way towards identifying people who need early screening like exists with breast cancer.  The current requirements for lung cancer screening still work under the assumption that only smokers get lung cancer.  If you aren’t over 55 and you haven’t smoked a lot in your life or aren’t having symptoms you don’t qualify for screening.  That needs to change.  It will save lives.  
  22. Like
    Curt got a reaction from PaulaC in 3 Week Lobectomy Follow Up Tomorrow   
    Lexi my situation may be unique in terms of genetic bio markers.  My grandmother, father and four of his eight siblings all had lung cancer.  All but one of my fathers siblings who had lung cancer have passed so they can’t be genetically tested.  My grand mother was diagnosed in her 80’s treated with radiation and passed in her 90’s of unrelated illness. The one aunt who is alive found her lung cancer after my dad was diagnosed and went for a screening.  She had a lobectomy, Stage 1, and required no follow up treatment.  That is five out of nine siblings and those mother who had lung cancer.  My grandmothers mother died young.  We are trying to get her medical history but it appears that she passed from cancer.  Three of them also had soft tissue sarcomas.  Throughout we’ve been told there is no hereditary aspect to the type of cancer we’ve all had.  That it was caused because everyone smoked.  I’ve never smoked.  A lot of people say second hand smoke but my parents were divorced and I didn’t live with my father.  I have a cousin who’s never smoked who is tracking multiple lung nodules.  I have three kids, a brother, 23 first cousins and their kids.  I suppose that could all be coincidence but I’m not buying it.  I’m tracking the genetic aspect of this as far as I can go. I want my family members (and everyone else’s) to be able to take a test for specific biomarkers, same as you can with breast cancer.  If they are positive for those markers I want them to be able to get periodic screenings, same as breast cancer.  
    In terms of my own potential treatment I was told that biomarker testing was standard procedure (I’ve been going to Sloane Kettering) and that knowing if there are any mutations or biomarkers tells them the best course of action for recurrent lung cancer of that type. I’ve already been told how I will be treated in the event of a recurrence.  I completely understand not wanting to think about that with such a low probability of it happening, but that’s not how I’m wired.  I want to have a plan, a back up plan and a back up to my back up plan.  
    I also think that biomarker testing gives researchers better information to research correlating recurrence and affective treatments.  I donated whatever samples of my tumor that are left after testing to whatever studies need it.
     
     
     
     
  23. Like
    Curt got a reaction from LexieCat in 3 Week Lobectomy Follow Up Tomorrow   
    Thank you Lexi. I hadn’t seen that article.  🤞🏻 
  24. Like
    Curt reacted to LexieCat in 3 Week Lobectomy Follow Up Tomorrow   
    This is the article I linked to previously: https://www.curetoday.com/articles/blood-test-may-identify-candidates-for-early-lung-cancer-screening
    This would be a terrific advance, I think.
  25. Like
    Curt got a reaction from LexieCat in 3 Week Lobectomy Follow Up Tomorrow   
    Lexi there are two blood test companies out there right now. Guardant Health 360 has gotten the most attention because they went public last year.  I don’t know how accurate their testing is.  The prospect of a simple blood test to determine predisposition or even diagnosis could eliminate a lot of scans for people at low risk (the 60%) and make those scans a part of a health screening for people determined to be at high risk (the 40%), similar to how prostate (PSA Test) and breast cancer is dealt with now.  We are getting closer.  Understanding the genetic make up of all of the lung cancer types and the genetic make up of all those who have or have had it will get us there that much quicker.  When the hospital asked if if I was willing to donate whatever tissue was left over for research they said only about half of patients are comfortable doing that.  They said something similar when they discussed the genetic testing (germline and somatic) with me.  I assumed it was something everyone would want to do.  There are lots of people (doctors included) who are still unaware of it and some who are not comfortable doing it.  Increasing those numbers can only help with the research and treatment side of things.  
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