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Rower Michelle

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  1. Like
    Rower Michelle got a reaction from Tom Galli in Oncology counseling   
    Hi, Just wanted to chime in on this thread.   I was also a licensed clinical social worker at the time of my diagnosis; the cancer center assigned an Onco-psychologist to me as part of my comprehensive team.  I remember being a little surprised as the psychologist was sooooo young.... I was wondering how this was going to all work.  Every time I saw him I couldn't get the word, "child doctor" out of my head.  Now that we've been together for four years, I think we both have found a groove that works if anything I can say certain things out loud that I would never say to my healthy friends... I find it helpful to have those types of discussions.  On occasion the youngster does come up with a few gems that make doing the mental work worthwhile for the long haul. 
  2. Like
    Rower Michelle reacted to Scruboak in Scans done, carry on!   
    Happy, happy Thanksgiving! It’s so helpful to hear from folks who e been through it all, Michelle❤️
  3. Like
    Rower Michelle got a reaction from Scruboak in Oncology counseling   
    Hi, Just wanted to chime in on this thread.   I was also a licensed clinical social worker at the time of my diagnosis; the cancer center assigned an Onco-psychologist to me as part of my comprehensive team.  I remember being a little surprised as the psychologist was sooooo young.... I was wondering how this was going to all work.  Every time I saw him I couldn't get the word, "child doctor" out of my head.  Now that we've been together for four years, I think we both have found a groove that works if anything I can say certain things out loud that I would never say to my healthy friends... I find it helpful to have those types of discussions.  On occasion the youngster does come up with a few gems that make doing the mental work worthwhile for the long haul. 
  4. Like
    Rower Michelle got a reaction from LouT in Well, this is confusing   
    Wise advise- to see if you can get the biomarker testing done... in a lot of cases, the organization doing the testing will either give a steep self pay discount or eat the cost of the test entirely.  My insurance company denied comprehensive biomarker testing (for stage IV!!).   It was a stressful time but in the end I didn't pay a dime.  Each of the companies that do biomarker testing has a consumer advocate to help with this situation.  
    The reason the insurance denied the comprehensive testing is that I had a "Limited Panel" which showed had no targets.   The comprehensive testing was more refined and did find an ALK mutation.  So in my case it was life saving.  To this day I'm still baffled by the denial. 
    In the end, it's the oncologist who has the final say.  I'm beginning to lose track of how many times the radiologist didn't have it quite right.   
  5. Like
    Rower Michelle reacted to LilyMir in Exon 12   
    Maybe consult with Dana Farber, they have a centre focused on EGFR: Chen-Huang Center for EGFR-mutant lung cancers. 
    https://www.dana-farber.org/chen-huang-center-for-egfr-mutant-lung-cancers/
  6. Like
    Rower Michelle got a reaction from BridgetO in Mom (Non-Smoker) diagnosed with Squamous Cell Carcinoma   
    Hi Annie,
    Welcome here. I would suggest getting a second opinion as soon as possible. While it’s rare for SCC to have biomarkers it can occur.  Chemo/Radiation is the standard of care AND so is at least one year of immunotherapy.  To suggest otherwise contradicts the NCCN guidelines which establishes the treatment plans for all cancers including lung.  Lung cancers in the never smoker population are complicated and really need an expert opinion.   
    Personally you’re not far from John Heymach MD at MD Anderson’s and I would suggest you reach out to the Go2Foundation and Lungevity Help Lines to line up a second and perhaps a third opinion.   Getting the treatment plan right out of the gate is really important.  Keep us posted…. We’re here to help!
    Michelle
     
     
     
  7. Like
    Rower Michelle got a reaction from LouT in Mom (Non-Smoker) diagnosed with Squamous Cell Carcinoma   
    Hi Annie,
    Welcome here. I would suggest getting a second opinion as soon as possible. While it’s rare for SCC to have biomarkers it can occur.  Chemo/Radiation is the standard of care AND so is at least one year of immunotherapy.  To suggest otherwise contradicts the NCCN guidelines which establishes the treatment plans for all cancers including lung.  Lung cancers in the never smoker population are complicated and really need an expert opinion.   
    Personally you’re not far from John Heymach MD at MD Anderson’s and I would suggest you reach out to the Go2Foundation and Lungevity Help Lines to line up a second and perhaps a third opinion.   Getting the treatment plan right out of the gate is really important.  Keep us posted…. We’re here to help!
    Michelle
     
     
     
  8. Like
    Rower Michelle got a reaction from LilyMir in Mom (Non-Smoker) diagnosed with Squamous Cell Carcinoma   
    Hi Annie,
    Welcome here. I would suggest getting a second opinion as soon as possible. While it’s rare for SCC to have biomarkers it can occur.  Chemo/Radiation is the standard of care AND so is at least one year of immunotherapy.  To suggest otherwise contradicts the NCCN guidelines which establishes the treatment plans for all cancers including lung.  Lung cancers in the never smoker population are complicated and really need an expert opinion.   
    Personally you’re not far from John Heymach MD at MD Anderson’s and I would suggest you reach out to the Go2Foundation and Lungevity Help Lines to line up a second and perhaps a third opinion.   Getting the treatment plan right out of the gate is really important.  Keep us posted…. We’re here to help!
    Michelle
     
     
     
  9. Like
    Rower Michelle got a reaction from Justin1970 in Yesterday's Dr. Visit   
    Okay- then the next step is to file an on line complaint with the State Department of Insurance.  They have jurisdiction over the insurance companies.  It’s usually a short on line form that takes about 10-15 minutes to fill out.  It’s worth your time… not all insurance doctors are “peers”.   
  10. Like
    Rower Michelle got a reaction from Justin1970 in Yesterday's Dr. Visit   
    Robert-
    Its good to hear from you.  I’m sorry you’re going through this and want to share that an insurance company should not have the final say in a treatment plan.  Most of the time these decisions are made by either clerks or physicians who are not board certified in thoracic oncology. 
     
    I would urge you to contact your US Senator immediately (assuming we’re talking Medicare Advantage).  The politicians in my opinion aren’t useful for much these days but they all have contempt for insurance denials.  Also contact your local news stations and see if you can file a help request.  
     
    I’ve been down this road before and now once again.  Senator Moran’s office is making people jump around trying to explain their irrational cost saving “medical necessity” criteria.  
     
    We all have to fight back….  Will keep you in my prayers. 
  11. Like
    Rower Michelle got a reaction from Scruboak in NSCLC stage lv - first line treatment didn’t work   
    Hi,
    Although I live in KS, I was born & raised in North Jersey.  (Exit 150).   My stage IV diagnosis came as a complete shock as I had no known risk factors and was very ill by the time we finally got it all sorted out.  That was four years ago, I’ve been in remission most of that time after the ALK mutation was discovered.  
    I had a similar chemo regiment- Carboplatin, Pemetrexed & Keytruda.  I had one round that showed the lung tumor shrinking but the lesion on my spine increased. I was also allergic to the chemo- in addition it triggered a all things maple allergy.  Fortunately the biomarker test came in just before round 2 of chemo.  The second opinion physician sent biomarker testing that was pretty sophisticated because the first round totally missed the ALK mutation.  
     
    Do you know what mutation you have? Obtaining a second opinion is a great idea as that MSK location patients have reported mixed satisfaction and many end up at UPenn or Fox Chase.  
     
    Lung Cancer is very sophisticated and going to a big name cancer center isn’t always the best choice, many physicians specialize in mutations.  You might want to consider contacting the Go2Foundation to learn about The Lung Match Program.  
     
    I’m so sorry you find yourself here- there are a number of young mothers you can also learn from at www.thewhiteribbonproject.com.   For reasons unknown young women are being diagnosed with lung cancer- some are in their 20s.   Google around for the story of Emily Daniels in Denver.   
     
    You might also find a dedicated Facebook page of young women too.  Hold onto your hope and leave no stone unturned.  There are many long term survivors and it’s up to us to stay on top of the research-there’s too much for the doctors to stay on top of.  Dr Google as we call it is not our friend.  
     
    If you’re on Twitter you might want to follow Steven V Liu MD, Christine Lovly MD and Drew Moganaki MD.   Twitter is a pretty good resource for research.   Many pages are dedicated to biomarkers.   
    Let us know how we can help and keep us posted.  You can do this…
    Michelle
     
  12. Like
    Rower Michelle got a reaction from Tom Galli in NSCLC stage lv - first line treatment didn’t work   
    The insurance company!!! We all know too well.  The only course is to fight back.  First off your doctor can file an appeal and if your insurance is employer based then you will need a file a complaint with Human Resources.   Most of the time when HR gets involved the insurance company backs down.  If all else fails then file a complaint with the State Department of Insurance.  The treatment combo proposed is totally reasonable.  
     
    If by any chance your insurance company uses a vendor called EviCore, we call it EvilCore and complaining on social mediapart of the wall of shame also works. It shouldn’t have to be this hard but sometimes is.  Generally it all works itself out so try not to stress too much about it   
     
  13. Like
    Rower Michelle got a reaction from LouT in NSCLC stage lv - first line treatment didn’t work   
    The insurance company!!! We all know too well.  The only course is to fight back.  First off your doctor can file an appeal and if your insurance is employer based then you will need a file a complaint with Human Resources.   Most of the time when HR gets involved the insurance company backs down.  If all else fails then file a complaint with the State Department of Insurance.  The treatment combo proposed is totally reasonable.  
     
    If by any chance your insurance company uses a vendor called EviCore, we call it EvilCore and complaining on social mediapart of the wall of shame also works. It shouldn’t have to be this hard but sometimes is.  Generally it all works itself out so try not to stress too much about it   
     
  14. Like
    Rower Michelle got a reaction from Justin1970 in NSCLC stage lv - first line treatment didn’t work   
    Hi,
    Although I live in KS, I was born & raised in North Jersey.  (Exit 150).   My stage IV diagnosis came as a complete shock as I had no known risk factors and was very ill by the time we finally got it all sorted out.  That was four years ago, I’ve been in remission most of that time after the ALK mutation was discovered.  
    I had a similar chemo regiment- Carboplatin, Pemetrexed & Keytruda.  I had one round that showed the lung tumor shrinking but the lesion on my spine increased. I was also allergic to the chemo- in addition it triggered a all things maple allergy.  Fortunately the biomarker test came in just before round 2 of chemo.  The second opinion physician sent biomarker testing that was pretty sophisticated because the first round totally missed the ALK mutation.  
     
    Do you know what mutation you have? Obtaining a second opinion is a great idea as that MSK location patients have reported mixed satisfaction and many end up at UPenn or Fox Chase.  
     
    Lung Cancer is very sophisticated and going to a big name cancer center isn’t always the best choice, many physicians specialize in mutations.  You might want to consider contacting the Go2Foundation to learn about The Lung Match Program.  
     
    I’m so sorry you find yourself here- there are a number of young mothers you can also learn from at www.thewhiteribbonproject.com.   For reasons unknown young women are being diagnosed with lung cancer- some are in their 20s.   Google around for the story of Emily Daniels in Denver.   
     
    You might also find a dedicated Facebook page of young women too.  Hold onto your hope and leave no stone unturned.  There are many long term survivors and it’s up to us to stay on top of the research-there’s too much for the doctors to stay on top of.  Dr Google as we call it is not our friend.  
     
    If you’re on Twitter you might want to follow Steven V Liu MD, Christine Lovly MD and Drew Moganaki MD.   Twitter is a pretty good resource for research.   Many pages are dedicated to biomarkers.   
    Let us know how we can help and keep us posted.  You can do this…
    Michelle
     
  15. Thanks
    Rower Michelle reacted to Tom Galli in NSCLC stage lv - first line treatment didn’t work   
    Welcome here.
    Michelle has sage advice on a second opinion and engaging with Doctors Liu, Lovly and Moganaki. You haven't given us information about mutations but I assume you have a laboratory analysis of your biopsy because you report combination chemotherapy including Keytruda--an immunotherapy drug. Your PD-L1 markers must have pointed to immunotherapy suitability. You report your tumors increased and sometimes those receiving immunotherapy (Keytruda) exhibit an increase attributed to swelling as the immunotherapy properties take hold.
    Michelle's mentioning Drew Moganaki opens up another possible treatment modality. Drew is a radiation oncologist and uses precision radiation (explained here) as a form of treatment. It may be possible for a radiation oncologist to eradicate the spots on your hip and perhaps your lung nodules using stereotactic body precision radiation therapy (SBRT). This holds the advantage of eliminating those spots while chemotherapy treats cells in the blood and lymphatic systems. I progressed to stage IV and SBRT "fried" a troublesome tumor in my left lung which allowed me a long period of extended life (nearly 18 years). This is called treating multi-focal tumors and this method is not a standard of care. That does not mean it is not effective.
    At this juncture, it is important to point out that there are two kinds of oncologists that treat us: medical oncologists and radiation oncologists. They use vastly different tools but both have very effective methods. If you seek a second opinion, include separate second opinion with a radiation oncologist about the possibility of treating multi-focal disease with precision radiation methods. A medical oncologist will likely not have insight into this method.
    There is a lady who has stage IV disease in our Forum and her only treatment is SBRT. Here is a blog about her experience. 
    Stay the course.
    Tom
  16. Like
    Rower Michelle got a reaction from Tom Galli in NSCLC stage lv - first line treatment didn’t work   
    Hi,
    Although I live in KS, I was born & raised in North Jersey.  (Exit 150).   My stage IV diagnosis came as a complete shock as I had no known risk factors and was very ill by the time we finally got it all sorted out.  That was four years ago, I’ve been in remission most of that time after the ALK mutation was discovered.  
    I had a similar chemo regiment- Carboplatin, Pemetrexed & Keytruda.  I had one round that showed the lung tumor shrinking but the lesion on my spine increased. I was also allergic to the chemo- in addition it triggered a all things maple allergy.  Fortunately the biomarker test came in just before round 2 of chemo.  The second opinion physician sent biomarker testing that was pretty sophisticated because the first round totally missed the ALK mutation.  
     
    Do you know what mutation you have? Obtaining a second opinion is a great idea as that MSK location patients have reported mixed satisfaction and many end up at UPenn or Fox Chase.  
     
    Lung Cancer is very sophisticated and going to a big name cancer center isn’t always the best choice, many physicians specialize in mutations.  You might want to consider contacting the Go2Foundation to learn about The Lung Match Program.  
     
    I’m so sorry you find yourself here- there are a number of young mothers you can also learn from at www.thewhiteribbonproject.com.   For reasons unknown young women are being diagnosed with lung cancer- some are in their 20s.   Google around for the story of Emily Daniels in Denver.   
     
    You might also find a dedicated Facebook page of young women too.  Hold onto your hope and leave no stone unturned.  There are many long term survivors and it’s up to us to stay on top of the research-there’s too much for the doctors to stay on top of.  Dr Google as we call it is not our friend.  
     
    If you’re on Twitter you might want to follow Steven V Liu MD, Christine Lovly MD and Drew Moganaki MD.   Twitter is a pretty good resource for research.   Many pages are dedicated to biomarkers.   
    Let us know how we can help and keep us posted.  You can do this…
    Michelle
     
  17. Like
    Rower Michelle got a reaction from LouT in NSCLC stage lv - first line treatment didn’t work   
    Hi,
    Although I live in KS, I was born & raised in North Jersey.  (Exit 150).   My stage IV diagnosis came as a complete shock as I had no known risk factors and was very ill by the time we finally got it all sorted out.  That was four years ago, I’ve been in remission most of that time after the ALK mutation was discovered.  
    I had a similar chemo regiment- Carboplatin, Pemetrexed & Keytruda.  I had one round that showed the lung tumor shrinking but the lesion on my spine increased. I was also allergic to the chemo- in addition it triggered a all things maple allergy.  Fortunately the biomarker test came in just before round 2 of chemo.  The second opinion physician sent biomarker testing that was pretty sophisticated because the first round totally missed the ALK mutation.  
     
    Do you know what mutation you have? Obtaining a second opinion is a great idea as that MSK location patients have reported mixed satisfaction and many end up at UPenn or Fox Chase.  
     
    Lung Cancer is very sophisticated and going to a big name cancer center isn’t always the best choice, many physicians specialize in mutations.  You might want to consider contacting the Go2Foundation to learn about The Lung Match Program.  
     
    I’m so sorry you find yourself here- there are a number of young mothers you can also learn from at www.thewhiteribbonproject.com.   For reasons unknown young women are being diagnosed with lung cancer- some are in their 20s.   Google around for the story of Emily Daniels in Denver.   
     
    You might also find a dedicated Facebook page of young women too.  Hold onto your hope and leave no stone unturned.  There are many long term survivors and it’s up to us to stay on top of the research-there’s too much for the doctors to stay on top of.  Dr Google as we call it is not our friend.  
     
    If you’re on Twitter you might want to follow Steven V Liu MD, Christine Lovly MD and Drew Moganaki MD.   Twitter is a pretty good resource for research.   Many pages are dedicated to biomarkers.   
    Let us know how we can help and keep us posted.  You can do this…
    Michelle
     
  18. Like
    Rower Michelle reacted to NikoleV in Air Pollution's Role in Lung Cancer   
    Hi everyone! Great conversation and much to think about. Here's another article from IASLC that talks about air pollution and lung cancer. I hope you find it helpful.
    https://www.iaslc.org/iaslc-news/press-release/air-pollution-and-lung-cancer-iaslc-position-statement
  19. Like
    Rower Michelle reacted to BridgetO in Covid and no covid   
    My wife came back from a business trip a couple of weeks ago. About two days later she started coughing, running a fever and feeling very tired. She did a home Covid test that turned out  negative, and a day or so later did a second one, also negative. So we figured "bad cold" and I didn't isolate myself from her. The fever abated, but after a week she was still coughing a lot and not feeling great, so she went to the doctor, who gave her  a prescription for benzonatate for cough and a PCR Covid test. And guess what? POSITIVE.  That same  day she did another home test that was negative.
    I hustled in and got a PCR test myself and had a second one today, 5 days later, and both were negative. I should be in the clear now. Whew! I had gotten the bivalent Omicron booster about a week before she got home. Although it's supposed to take two weeks for it to give full immunity, I figure it must have given me some.
    Moral(s)  to the story:  Don't trust the home tests. Do get the bivalent booster. And maybe, if somebody in your household comes home after a long flight, stay away from them for a few days and longer if they have symptoms.
    BTW, she still hasn't had the CT for the lung nodule seen in a chest exray, because the CT department was booked up and also because she really felt she need to go on this recent trip (to Madagascar), where she had a lot of things scheduled. CT is set for later this month.
  20. Like
    Rower Michelle got a reaction from BridgetO in Worried about my 21yo daughter.   
    This sounds like my story!  So no, don’t waste any time in advocating for a low dose CT scan.  I had three months of antibiotics, inhalers and steroids— 4 different doctors, 13 appointments with diagnosis such as sinus infections, allergies, whooping cough, acid reflux, fungal infection, bronchitis, atypical pneumonia, pulmonary embolism before I had the CT scan.  Everyone was shocked when the biopsy revealed a stage IV lung cancer.  It wasn’t ever considered.  
     
    Unfortunately my story is shared by many.  Our thoughts and prayers are with you and the best way forward is to demand the scan.  Please keep us posted. 
     
    Michelle
  21. Like
    Rower Michelle reacted to Laurel77 in Looking for hope   
    Hi Karyn!
    Of course there is hope, that is why we are all here. I will let others with more experience as to your particular type of cancer answer the big questions. I just popped in because I can relate to your feelings and the story you shared. I felt the same way, and all I could think about after my lung cancer diagnosis was my mom and dad, who both died from lung cancer. Mom opted for the treatment, dad did not.  Mind you, this was years ago, (28 yrs ago for mom and 15 for dad), and cancer treatment has come a long, long way since. Still, beginning treatment was the scariest thing I have ever done. But, as Karen L above said, what else is there? A fight has been brought to us, and fight we must. It is the ONLY option.
    I also get the 'friends' and their good intentions yet sometimes stupid words. Also the 'look' some give you like you are already dead. They do not know any better, and I find talking to people who have or are actually going through the cancer and treatment is the most helpful, hopeful and informative way to go. They get it. Our friends, in spite of their good intentions, .. do not. I also rely heavily on my wonderful care team to answer questions. I've found that questions are very important, as is being your own advocate. Our busy medical teams sometimes forget to explain everything, and /or assume you already know or were told. Whatever the case, I hammer them with questions constantly.
    I completed my first round of chemo last week. I'm also on daily radiation treatments. I made it through the worst of the chemo side effects and am feeling better today. I'm not sure what to expect, as I have been told the side effects get worse with each round, but forward is the only direction I can take.
    Fight the fight, Karyn, and NEVER lose hope. I have recently met many folks with different types of so called 'terminal' cancer who have survived for years and years and are still fighting on and enjoying their lives. They have become my inspiration.
    Everyone here has your back, and we will be with you every step of the way.
    Peace and love, 
    Laural
  22. Like
    Rower Michelle reacted to Karen_L in Looking for hope   
    Hi Karyn, 
    I'm sorry your friend's comment was distressing for you. People mean well but sometimes the things they say are unintentionally hurtful or upsetting. I'm also sorry you are coping with so much. I'm also Stage 4 adenocarcinoma, but have no experience with the infusion combo you're experiencing.  
    The  prognosis area of lung cancer has been turned on its head by recent results of research, so I have not found it beneficial to my mental health to pay attention to the survival stats. Not when I have friends in my local cancer group who have been living with Stage 4 lung cancer for 10, 12, 16 years, others who have lived for 10+ with one lung, etc. And these are people with active, meaningful lives. Terminal? Well, everyone is, when you get right down to it. We're just aware of it, more than the average person.
    I'm not sure what your friend was getting at, but it seems that adopting a mindset that you're terminal is going to make you miserable. When people tell me I'm so brave or whatever else, I have a choice to buy in to their thinking or not. I think people say stuff like that because they're scared and on some level want to distance themselves from me. Last week, one person told me I had courage. We're good friends, so I could be frank. That was ridiculous, I told him, like I'm not going to do tests or have treatment plans? It doesn't take courage to do that, just common sense. What takes courage for me right now is to build a meaningful life within the parameters I currently have. So, what do I want? Yikes! In my book, that's a question that needs some courage to answer. It's certainly not one I expected at this point in my life. 
    I'm glad you found us, Karyn. 
  23. Like
    Rower Michelle reacted to AleHondaa in My updates (22 Years old, NSCLC)   
    Guys!
    I have great news! Today will be my last chemo!! After today, I will just be on keytruda :). I’m so thankful for everything and the support I’ve received from everyone here. The fight isn’t over but it seems like the light at the end of the tunnel is approaching me.
    Maintaining a good attitude and just living life day to day like it doesn’t exist is truly the key to fighting this. Everyone else that’s fighting, just keep pushing and you’ll make it! Believe me, god works miracles to those who go through his trials in life. 
     
    Ale 🤍
  24. Like
    Rower Michelle got a reaction from LouT in Worried about my 21yo daughter.   
    This sounds like my story!  So no, don’t waste any time in advocating for a low dose CT scan.  I had three months of antibiotics, inhalers and steroids— 4 different doctors, 13 appointments with diagnosis such as sinus infections, allergies, whooping cough, acid reflux, fungal infection, bronchitis, atypical pneumonia, pulmonary embolism before I had the CT scan.  Everyone was shocked when the biopsy revealed a stage IV lung cancer.  It wasn’t ever considered.  
     
    Unfortunately my story is shared by many.  Our thoughts and prayers are with you and the best way forward is to demand the scan.  Please keep us posted. 
     
    Michelle
  25. Like
    Rower Michelle reacted to Holdonhope in Dad's Stage IV NSCLC (updates)   
    4th round of chemo and immunotherapy done. Scans done as well. The main tumor shrank by 50%, the little nodules in the opposite lung disappeared and the pleural effusion is halved in size. It seems most likely chemo is working. My fear is when chemo stops after 2 more cycles then it will be just immunotherapy. My dads Pdl-1 levels and TMB is low. But I am grateful for these victories for now
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