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Meloni

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  1. Like
    Meloni reacted to ljuliemoss in Treatment Update - Upcoming Scan   
    Meloni,
    I live in Spokane Valley! Hi. I am recently diagnosed w NSC and am fighting w insurance and going through more diagnostics to get a good enough biopsy to get cyberknife approved. The waiting is the hardest.
    Hope all goes well for you
    Julie
     
  2. Like
    Meloni reacted to KatieB in A surprising side effect of lung cancer treatment is turning heads.   
    Patients' Gray Hair Turns Dark After Immunotherapy for Lung Cancer
    A surprising side effect of lung cancer treatment is turning heads.
    BY MINDY WAIZER
    Cancer treatments can have some terrible side effects. But one recent immunotherapy treatment for lung cancer has turned up a surprising — and not unwelcome — result. The patients’ gray hair turned significantly darker. 

    The study, which was published in JAMA Dermatology, examined 14 patients who have non-small cell lung cancer (NSCLC) and were receiving immunotherapy treatments including one of the following agents: Opdivo (nivolumab), Keytruda (pembrolizumab) or Tecentriq (atezolizumab) at a hospital in Spain. Adverse effects of these kinds of treatments are likely to include cutaneous toxic side effects or dermatological problems, so the patients were being monitored by dermatologists.

    What doctors didn’t expect to see was that over the course of the treatment, the patients’ hair returned to youthful-looking, darker shades — the shades the patients’ hair had been before their hair turned gray. The average age of the patients was 65.

    Hair repigmentation is very rare. It has been reported before in relation to drugs such as Thalomid, for example, but it has never before been reported in relation to immunotherapy treatment for lung cancer.

    The reason for the darkening of patients’ hair color in these cases is still unclear. The number of patients in this study is small, and of course, more studies must be conducted.

    “This was totally unexpected, so it was exciting,” Noelia Rivera, M.D., dermatologist, Department of Dermatology, Hospital Universitari Germans Trias i Pujol, one of the authors of the study, said in an interview with CURE.   

    “The high rates of good response to therapy in these patients was also an exciting finding. We are surprised at the results, and we are encouraged to keep on with the study,” she said.

    Thirteen of the 14 patients responded well to the immunotherapy treatment, reporting either partial or fully stable disease states. One had to stop the therapy after four cycles of treatment because of a life-threatening progression of the disease.

    The dual, positive implications of this study could be far-reaching. First, of course, it is good news for many patients with lung cancer, who may be able to benefit from these effective therapies. Second: just imagine if researchers could isolate the method for turning back the clock on graying hair. A whole new wave of age-defying hair solutions could be born.

    Rivera urges a cautious approach to the news of these patients’ hair repigmentation. “A lot of research is yet required, first to come up with a study, and after that, to get funding to develop the project,” she said.
    http://www.curetoday.com/articles/patients-gray-hair-turns-dark-after-immunotherapy-for-lung-cancer
     
     
  3. Like
    Meloni reacted to Steff in A surprising side effect of lung cancer treatment is turning heads.   
    WOW! My mom was super excited that her hair came back with some curl in it after chemo a year ago.  Now that's she's trying immunotherapy, I can't wait to tell her about this study...she will get a kick out of it!  Thanks for sharing!  I also enjoy hearing how so many people are responding well to immunotherapy.
  4. Like
    Meloni got a reaction from Tom Galli in Treatment Update - Upcoming Scan   
    Hey Friends,
    I can't recall where I left off, so here's a quick rundown: after treatment concluded late last year, I discovered an enlarged supraclavicular lymph node (late January). It was scanned, biopsied, and tested positive for NSCLC. They sent it for genetic testing, and two results included ALK+ and a TMB level Intermediate. The lymph node was surgically removed; however, something about the lymph node in the pathology report indicated cancer may still be present. The Tumor Board did not feel that radiation therapy would be of benefit at this time, and at the moment I'm taking Xalkori, which is a TKI approved for ALK+ NSCLC. 
    Like the previous chemo, I meet with the oncologist twice per month to review side effects of Xalkori and check blood counts and liver health. He has bumped up my scans to full PET/CTs, and they will be every 3-4 months, instead of every 6 months. My PET is next Wed, and we meet next Fri to discuss results. I also meet with the Thoracic Surgeon the following Monday, as he's requested to be involved with scan reviews from here on out. 
    The oncologist had referred me to a neurologist months ago, because my migraines had severely worsened post-cancer treatment and head MRIs indicated nothing was going on upstairs (heh). Stroke of luck, they called and bumped up my appointment by more than a month, and I was able to get in this week. I really like him and his staff. He has some new tricks to handle migraines I've not used before, and he'd already reviewed information about my NSCLC, such as my brain scans, which I really appreciated. He said the doctor who read them was really talented and my scans looked really good. He also said (I asked), that if the cancer does spread to my brain, he would not be the specific neurologist who treats me (it's not his specialty), but if I have any issues that worry me, I can call or come in and they can evaluate me and get me a scan ASAP. 
    One last thing: people whose NSCLC is ALK+ are raving about certain oncologists who are also lead researchers in the ALK realm. One is Dr. Alice Shaw, in Mass. It looks like she does a lot of 2nd opinion work, and will review things in such a way where your home team is still the treating team, but she's more of an expert consultant, I guess? Anyway, I approached my oncologist and asked whether he would be interested in her input, if I can arrange a 2nd opinion. He said if we can swing the cost (we have Tri-Care Prime, so going to see how much, if any, they will pay), he'd be very interested in hearing input. 
    That's what I have for now. Sorry for the long post!
    <3
  5. Like
    Meloni got a reaction from KatieB in Treatment Update - Upcoming Scan   
    Hey Friends,
    I can't recall where I left off, so here's a quick rundown: after treatment concluded late last year, I discovered an enlarged supraclavicular lymph node (late January). It was scanned, biopsied, and tested positive for NSCLC. They sent it for genetic testing, and two results included ALK+ and a TMB level Intermediate. The lymph node was surgically removed; however, something about the lymph node in the pathology report indicated cancer may still be present. The Tumor Board did not feel that radiation therapy would be of benefit at this time, and at the moment I'm taking Xalkori, which is a TKI approved for ALK+ NSCLC. 
    Like the previous chemo, I meet with the oncologist twice per month to review side effects of Xalkori and check blood counts and liver health. He has bumped up my scans to full PET/CTs, and they will be every 3-4 months, instead of every 6 months. My PET is next Wed, and we meet next Fri to discuss results. I also meet with the Thoracic Surgeon the following Monday, as he's requested to be involved with scan reviews from here on out. 
    The oncologist had referred me to a neurologist months ago, because my migraines had severely worsened post-cancer treatment and head MRIs indicated nothing was going on upstairs (heh). Stroke of luck, they called and bumped up my appointment by more than a month, and I was able to get in this week. I really like him and his staff. He has some new tricks to handle migraines I've not used before, and he'd already reviewed information about my NSCLC, such as my brain scans, which I really appreciated. He said the doctor who read them was really talented and my scans looked really good. He also said (I asked), that if the cancer does spread to my brain, he would not be the specific neurologist who treats me (it's not his specialty), but if I have any issues that worry me, I can call or come in and they can evaluate me and get me a scan ASAP. 
    One last thing: people whose NSCLC is ALK+ are raving about certain oncologists who are also lead researchers in the ALK realm. One is Dr. Alice Shaw, in Mass. It looks like she does a lot of 2nd opinion work, and will review things in such a way where your home team is still the treating team, but she's more of an expert consultant, I guess? Anyway, I approached my oncologist and asked whether he would be interested in her input, if I can arrange a 2nd opinion. He said if we can swing the cost (we have Tri-Care Prime, so going to see how much, if any, they will pay), he'd be very interested in hearing input. 
    That's what I have for now. Sorry for the long post!
    <3
  6. Like
    Meloni got a reaction from LaurenH in Treatment Update - Upcoming Scan   
    Hey Friends,
    I can't recall where I left off, so here's a quick rundown: after treatment concluded late last year, I discovered an enlarged supraclavicular lymph node (late January). It was scanned, biopsied, and tested positive for NSCLC. They sent it for genetic testing, and two results included ALK+ and a TMB level Intermediate. The lymph node was surgically removed; however, something about the lymph node in the pathology report indicated cancer may still be present. The Tumor Board did not feel that radiation therapy would be of benefit at this time, and at the moment I'm taking Xalkori, which is a TKI approved for ALK+ NSCLC. 
    Like the previous chemo, I meet with the oncologist twice per month to review side effects of Xalkori and check blood counts and liver health. He has bumped up my scans to full PET/CTs, and they will be every 3-4 months, instead of every 6 months. My PET is next Wed, and we meet next Fri to discuss results. I also meet with the Thoracic Surgeon the following Monday, as he's requested to be involved with scan reviews from here on out. 
    The oncologist had referred me to a neurologist months ago, because my migraines had severely worsened post-cancer treatment and head MRIs indicated nothing was going on upstairs (heh). Stroke of luck, they called and bumped up my appointment by more than a month, and I was able to get in this week. I really like him and his staff. He has some new tricks to handle migraines I've not used before, and he'd already reviewed information about my NSCLC, such as my brain scans, which I really appreciated. He said the doctor who read them was really talented and my scans looked really good. He also said (I asked), that if the cancer does spread to my brain, he would not be the specific neurologist who treats me (it's not his specialty), but if I have any issues that worry me, I can call or come in and they can evaluate me and get me a scan ASAP. 
    One last thing: people whose NSCLC is ALK+ are raving about certain oncologists who are also lead researchers in the ALK realm. One is Dr. Alice Shaw, in Mass. It looks like she does a lot of 2nd opinion work, and will review things in such a way where your home team is still the treating team, but she's more of an expert consultant, I guess? Anyway, I approached my oncologist and asked whether he would be interested in her input, if I can arrange a 2nd opinion. He said if we can swing the cost (we have Tri-Care Prime, so going to see how much, if any, they will pay), he'd be very interested in hearing input. 
    That's what I have for now. Sorry for the long post!
    <3
  7. Like
    Meloni got a reaction from BridgetO in Treatment Update - Upcoming Scan   
    Hey Friends,
    I can't recall where I left off, so here's a quick rundown: after treatment concluded late last year, I discovered an enlarged supraclavicular lymph node (late January). It was scanned, biopsied, and tested positive for NSCLC. They sent it for genetic testing, and two results included ALK+ and a TMB level Intermediate. The lymph node was surgically removed; however, something about the lymph node in the pathology report indicated cancer may still be present. The Tumor Board did not feel that radiation therapy would be of benefit at this time, and at the moment I'm taking Xalkori, which is a TKI approved for ALK+ NSCLC. 
    Like the previous chemo, I meet with the oncologist twice per month to review side effects of Xalkori and check blood counts and liver health. He has bumped up my scans to full PET/CTs, and they will be every 3-4 months, instead of every 6 months. My PET is next Wed, and we meet next Fri to discuss results. I also meet with the Thoracic Surgeon the following Monday, as he's requested to be involved with scan reviews from here on out. 
    The oncologist had referred me to a neurologist months ago, because my migraines had severely worsened post-cancer treatment and head MRIs indicated nothing was going on upstairs (heh). Stroke of luck, they called and bumped up my appointment by more than a month, and I was able to get in this week. I really like him and his staff. He has some new tricks to handle migraines I've not used before, and he'd already reviewed information about my NSCLC, such as my brain scans, which I really appreciated. He said the doctor who read them was really talented and my scans looked really good. He also said (I asked), that if the cancer does spread to my brain, he would not be the specific neurologist who treats me (it's not his specialty), but if I have any issues that worry me, I can call or come in and they can evaluate me and get me a scan ASAP. 
    One last thing: people whose NSCLC is ALK+ are raving about certain oncologists who are also lead researchers in the ALK realm. One is Dr. Alice Shaw, in Mass. It looks like she does a lot of 2nd opinion work, and will review things in such a way where your home team is still the treating team, but she's more of an expert consultant, I guess? Anyway, I approached my oncologist and asked whether he would be interested in her input, if I can arrange a 2nd opinion. He said if we can swing the cost (we have Tri-Care Prime, so going to see how much, if any, they will pay), he'd be very interested in hearing input. 
    That's what I have for now. Sorry for the long post!
    <3
  8. Like
    Meloni got a reaction from Susan Cornett in Treatment Update - Upcoming Scan   
    Hey Friends,
    I can't recall where I left off, so here's a quick rundown: after treatment concluded late last year, I discovered an enlarged supraclavicular lymph node (late January). It was scanned, biopsied, and tested positive for NSCLC. They sent it for genetic testing, and two results included ALK+ and a TMB level Intermediate. The lymph node was surgically removed; however, something about the lymph node in the pathology report indicated cancer may still be present. The Tumor Board did not feel that radiation therapy would be of benefit at this time, and at the moment I'm taking Xalkori, which is a TKI approved for ALK+ NSCLC. 
    Like the previous chemo, I meet with the oncologist twice per month to review side effects of Xalkori and check blood counts and liver health. He has bumped up my scans to full PET/CTs, and they will be every 3-4 months, instead of every 6 months. My PET is next Wed, and we meet next Fri to discuss results. I also meet with the Thoracic Surgeon the following Monday, as he's requested to be involved with scan reviews from here on out. 
    The oncologist had referred me to a neurologist months ago, because my migraines had severely worsened post-cancer treatment and head MRIs indicated nothing was going on upstairs (heh). Stroke of luck, they called and bumped up my appointment by more than a month, and I was able to get in this week. I really like him and his staff. He has some new tricks to handle migraines I've not used before, and he'd already reviewed information about my NSCLC, such as my brain scans, which I really appreciated. He said the doctor who read them was really talented and my scans looked really good. He also said (I asked), that if the cancer does spread to my brain, he would not be the specific neurologist who treats me (it's not his specialty), but if I have any issues that worry me, I can call or come in and they can evaluate me and get me a scan ASAP. 
    One last thing: people whose NSCLC is ALK+ are raving about certain oncologists who are also lead researchers in the ALK realm. One is Dr. Alice Shaw, in Mass. It looks like she does a lot of 2nd opinion work, and will review things in such a way where your home team is still the treating team, but she's more of an expert consultant, I guess? Anyway, I approached my oncologist and asked whether he would be interested in her input, if I can arrange a 2nd opinion. He said if we can swing the cost (we have Tri-Care Prime, so going to see how much, if any, they will pay), he'd be very interested in hearing input. 
    That's what I have for now. Sorry for the long post!
    <3
  9. Like
    Meloni got a reaction from LaurenH in Shocking news   
    Lbelle78, I'm so saddened to hear this news. so many hugs and prayers being sent to you and your family. <3
    I tested ALK+ as well, shortly after my lung cancer recurred in January. Now I'm taking Xalkori, one of the targeted drugs they use specifically for ALK+ NSCLC. (my point isn't to talk about myself, but to tell you that, once you have time to digest this incredibly emotional burden that's been thrust upon you, there are several treatments available. Researchers are looking at this mutation, and we are reaping the benefits. <3
    I'm happy to hear you will get a 2nd opinion. I hope, if your insurance and finances allow it, that you will consider a specialty center. A doctor who specializes in ALK would be so beneficial, and I'd bet there is some sort of long distance treatment available so you don't have to move (I've heard of some patients having plans written up and sent to their local providers, etc). 
    Regarding your oncologist's lack of hope: there is hope. There is so much hope, and so much opportunity for life and love and watching your beloved children grow, and standing by your husband's side as the two of you grow old together. 
    I read an article the other day, and linked it below. I had been looking for information on the ALK mutation, and here I happened across the story of a young man who was diagnosed with Stage IV, ALK+ NSLC while in his twenties.
    Spoiler alert: There is always hope!
    http://www.curetoday.com/publications/cure/2015/lung-2015/hitting-a-target-in-advanced-non-small-cell-lung-cancer?p=1
  10. Like
    Meloni got a reaction from Fred G in IV'e Got Veins, Maybe   
    This thread needs to be reactivated, especially for the new people coming on. 
    If you or your loved one has recently been diagnosed, ask about a port for chemo! It's been such a godsend for me. I've only had four chemo sessions to date, and my oncologist recommended I keep my port "indefinitely" for now, in the event we need to do more in the future (lo and behold, this may be happening soon). I hardly notice its presence, and the only maintenance it requires is a flush every 4-6 weeks. 
    My port has been used my port for chemo sessions and for the in-between hydration sessions. So much better than a stupid IV. I still get vein stuck for contrast imaging and outpatient blood draws. Also, if I go to the hospital, and somebody isn't port trained or seems fishy with their training, I don't let them touch it. Use your best judgment on that.  
  11. Like
    Meloni got a reaction from Mommy's girl in Shocking news   
    Lbelle78, I'm so saddened to hear this news. so many hugs and prayers being sent to you and your family. <3
    I tested ALK+ as well, shortly after my lung cancer recurred in January. Now I'm taking Xalkori, one of the targeted drugs they use specifically for ALK+ NSCLC. (my point isn't to talk about myself, but to tell you that, once you have time to digest this incredibly emotional burden that's been thrust upon you, there are several treatments available. Researchers are looking at this mutation, and we are reaping the benefits. <3
    I'm happy to hear you will get a 2nd opinion. I hope, if your insurance and finances allow it, that you will consider a specialty center. A doctor who specializes in ALK would be so beneficial, and I'd bet there is some sort of long distance treatment available so you don't have to move (I've heard of some patients having plans written up and sent to their local providers, etc). 
    Regarding your oncologist's lack of hope: there is hope. There is so much hope, and so much opportunity for life and love and watching your beloved children grow, and standing by your husband's side as the two of you grow old together. 
    I read an article the other day, and linked it below. I had been looking for information on the ALK mutation, and here I happened across the story of a young man who was diagnosed with Stage IV, ALK+ NSLC while in his twenties.
    Spoiler alert: There is always hope!
    http://www.curetoday.com/publications/cure/2015/lung-2015/hitting-a-target-in-advanced-non-small-cell-lung-cancer?p=1
  12. Like
    Meloni got a reaction from corinnecasebeer in Shocking news   
    Lbelle78, I'm so saddened to hear this news. so many hugs and prayers being sent to you and your family. <3
    I tested ALK+ as well, shortly after my lung cancer recurred in January. Now I'm taking Xalkori, one of the targeted drugs they use specifically for ALK+ NSCLC. (my point isn't to talk about myself, but to tell you that, once you have time to digest this incredibly emotional burden that's been thrust upon you, there are several treatments available. Researchers are looking at this mutation, and we are reaping the benefits. <3
    I'm happy to hear you will get a 2nd opinion. I hope, if your insurance and finances allow it, that you will consider a specialty center. A doctor who specializes in ALK would be so beneficial, and I'd bet there is some sort of long distance treatment available so you don't have to move (I've heard of some patients having plans written up and sent to their local providers, etc). 
    Regarding your oncologist's lack of hope: there is hope. There is so much hope, and so much opportunity for life and love and watching your beloved children grow, and standing by your husband's side as the two of you grow old together. 
    I read an article the other day, and linked it below. I had been looking for information on the ALK mutation, and here I happened across the story of a young man who was diagnosed with Stage IV, ALK+ NSLC while in his twenties.
    Spoiler alert: There is always hope!
    http://www.curetoday.com/publications/cure/2015/lung-2015/hitting-a-target-in-advanced-non-small-cell-lung-cancer?p=1
  13. Like
    Meloni reacted to Tylalla in Dr. mislead me regarding my time line to live.   
    Hi BBB,
    I've never been given a timeline and I've never asked for one. I don't want to know, because if I did, I would focus in on that to the point of being obsessive, and would forget about just "living". Life is a beautiful thing, but it's entirely too short to be so concerned about when it's going to end. You miss out on the beauty and the little things that make life so enjoyable. Have you walked in the grass with bare feet recently? Smelled a freshly picked dandelion? Laid on a blanket in the yard and found the animals in the clouds? Closed your eyes, taken a deep breath, and just listen for a minute to all the sounds around you, and then open your eyes and write down everything you heard? Those were all things I used to do as a child, but I have rediscovered the joy of each game by doing them as an adult. Those are some of the "little things" that I would have forgotten about if I had been focused on a timeline. That's just my opinion on it all. My prayers are with you.

    Blessings,
    Michelle


    Sent from my SAMSUNG-SM-G890A using Tapatalk


  14. Like
    Meloni reacted to BBB in Dr. mislead me regarding my time line to live.   
    I want to thank the both of you for your replies.  Very helpful and I'm feeling better about my diagnosis.  Blessings to you both! 
  15. Like
    Meloni reacted to KatieB in Dr. mislead me regarding my time line to live.   
    Simply put, doctors do not know how each individual will respond to this disease or their treatments.  My father had extensive stage sclc and treatments for him were grueling and not effective.  His prognosis was 4 months WITH treatment and he lived 11 months and 21 days.  
    A patient with an identical diagnosis and treatment plan as he, lived almost 9 years longer than he did.  WHY?  There was no way doctors could have predicted that. 
    I agree with your doctor when he says not to gauge yourself with statistics you find online or with anyone else.  
    For those of us who have been brushed with a life threatening disease- perhaps the perspective and lesson should be to always live life as if it is precious and finite- no matter what your prognosis is.
    Best hopes,
    KatieB
     
     
     
  16. Like
    Meloni reacted to Tom Galli in Dr. mislead me regarding my time line to live.   
    BBB,
    I certainly wouldn't say your are nitpicking, especially when it comes down to something as important as life.
    I believe most doctors do they best they can explaining the statistics of life projection after one is diagnosed with cancer.  I also had one -- about 6 months -- and it was a good faith projection based upon what the doctor knew of my disease at the time.  But neither lung cancer nor life is constant.  Change, however, is constant and change makes statistical projection for life after cancer little more than a good faith educated guess.  I wrote more about the difficulty of using statistics to forecast life after cancer here.
    My portion of wasted life involved fretting away the NED (no evidence of disease) periods during my treatment.  I should have been engaged doing things I enjoy.  After all, in choosing treatment, I chose life but I wasted the extra life I was granted.  I tell you this to suggest you not worry about how much time you have but rather worry about what you are going to do with the time you have.  That, in my opinion, is productive concern. 
    Stay the course.
    Tom
  17. Like
    Meloni reacted to ljuliemoss in new diagnosis   
    Thanks, You guys are awesome! Julie
  18. Like
    Meloni got a reaction from ljuliemoss in new diagnosis   
    LJulieMoss,
    First, and I failed to mention in my first post: I am so sorry for your diagnosis. Your fear and anxiety are completely normal, of course. I wish you didn't need to be here, but I'm so glad you found this forum. There are a lot of amazing people on this site, and survivors who have been here since the JURASSIC ERA (I'm looking at you, Tom!  ). 
    skmcornett is correct, and certainly has the experience to walk you through the process of appealing a denial. Also, I'm reminded that Tri-Care (managed by United Healthcare), offers nurse case management services to people with diagnoses such as ours. If you haven't already explored this option, you may want to check out whether your insurance offers the service. It's beneficial to we the patients because referrals will be streamlined and often approved more quickly. 
    Regarding surgery v. Cyber knife: I'm not familiar with cyber knife. Did your providers explain if one procedure would be more beneficial to overall prognosis? My understanding is that surgery is generally 1st treatment, if possible, but technology changes more quickly than I can keep up.  
    If you're interested, there are many here who can walk you through and just listen to your anxieties and fears of surgery, lung cancer, etc. <3 
    IF you explore the surgery route, take a look at Dr. Jon Boyum, if he's on your insurance. His team is at Deaconess, but he has privileges at Sacred Heart as well, and he'll operate at either location. He's amazing. 
    I hope to hear from you soon. <3 
     
  19. Like
    Meloni got a reaction from Tom Galli in new diagnosis   
    LJulieMoss,
    First, and I failed to mention in my first post: I am so sorry for your diagnosis. Your fear and anxiety are completely normal, of course. I wish you didn't need to be here, but I'm so glad you found this forum. There are a lot of amazing people on this site, and survivors who have been here since the JURASSIC ERA (I'm looking at you, Tom!  ). 
    skmcornett is correct, and certainly has the experience to walk you through the process of appealing a denial. Also, I'm reminded that Tri-Care (managed by United Healthcare), offers nurse case management services to people with diagnoses such as ours. If you haven't already explored this option, you may want to check out whether your insurance offers the service. It's beneficial to we the patients because referrals will be streamlined and often approved more quickly. 
    Regarding surgery v. Cyber knife: I'm not familiar with cyber knife. Did your providers explain if one procedure would be more beneficial to overall prognosis? My understanding is that surgery is generally 1st treatment, if possible, but technology changes more quickly than I can keep up.  
    If you're interested, there are many here who can walk you through and just listen to your anxieties and fears of surgery, lung cancer, etc. <3 
    IF you explore the surgery route, take a look at Dr. Jon Boyum, if he's on your insurance. His team is at Deaconess, but he has privileges at Sacred Heart as well, and he'll operate at either location. He's amazing. 
    I hope to hear from you soon. <3 
     
  20. Like
    Meloni got a reaction from Susan Cornett in new diagnosis   
    LJulieMoss,
    First, and I failed to mention in my first post: I am so sorry for your diagnosis. Your fear and anxiety are completely normal, of course. I wish you didn't need to be here, but I'm so glad you found this forum. There are a lot of amazing people on this site, and survivors who have been here since the JURASSIC ERA (I'm looking at you, Tom!  ). 
    skmcornett is correct, and certainly has the experience to walk you through the process of appealing a denial. Also, I'm reminded that Tri-Care (managed by United Healthcare), offers nurse case management services to people with diagnoses such as ours. If you haven't already explored this option, you may want to check out whether your insurance offers the service. It's beneficial to we the patients because referrals will be streamlined and often approved more quickly. 
    Regarding surgery v. Cyber knife: I'm not familiar with cyber knife. Did your providers explain if one procedure would be more beneficial to overall prognosis? My understanding is that surgery is generally 1st treatment, if possible, but technology changes more quickly than I can keep up.  
    If you're interested, there are many here who can walk you through and just listen to your anxieties and fears of surgery, lung cancer, etc. <3 
    IF you explore the surgery route, take a look at Dr. Jon Boyum, if he's on your insurance. His team is at Deaconess, but he has privileges at Sacred Heart as well, and he'll operate at either location. He's amazing. 
    I hope to hear from you soon. <3 
     
  21. Like
    Meloni got a reaction from BridgetO in new diagnosis   
    LJulieMoss,
    First, and I failed to mention in my first post: I am so sorry for your diagnosis. Your fear and anxiety are completely normal, of course. I wish you didn't need to be here, but I'm so glad you found this forum. There are a lot of amazing people on this site, and survivors who have been here since the JURASSIC ERA (I'm looking at you, Tom!  ). 
    skmcornett is correct, and certainly has the experience to walk you through the process of appealing a denial. Also, I'm reminded that Tri-Care (managed by United Healthcare), offers nurse case management services to people with diagnoses such as ours. If you haven't already explored this option, you may want to check out whether your insurance offers the service. It's beneficial to we the patients because referrals will be streamlined and often approved more quickly. 
    Regarding surgery v. Cyber knife: I'm not familiar with cyber knife. Did your providers explain if one procedure would be more beneficial to overall prognosis? My understanding is that surgery is generally 1st treatment, if possible, but technology changes more quickly than I can keep up.  
    If you're interested, there are many here who can walk you through and just listen to your anxieties and fears of surgery, lung cancer, etc. <3 
    IF you explore the surgery route, take a look at Dr. Jon Boyum, if he's on your insurance. His team is at Deaconess, but he has privileges at Sacred Heart as well, and he'll operate at either location. He's amazing. 
    I hope to hear from you soon. <3 
     
  22. Like
    Meloni reacted to Susan Cornett in new diagnosis   
    Julie,
    First, what was the reasoning for denying the treatment?  You and your physician have the right to appeal the decision. Your coverage should provide a process for both standard and expedited appeals.  If you can, either post here or message me the name of your insurance company and (this is key) the number in the lower left corner of your policy or certificate.  This is the form number and, once I have that, I can see the approved contract.  Perhaps my 25+ years writing contracts in the health insurance industry may help someone.  
  23. Like
    Meloni got a reaction from Tom Galli in Newbie   
    That's fantastic!!!! Woot woot!!!
  24. Like
    Meloni got a reaction from Tom Galli in Newbie   
    Hi JLW,
    Like the others, I would ask clarification about the size of the nodule (or perhaps you have a typo?). The size you indicate, 0.9 mm, is 1/10 of one millimeter. Ten millimeters equals one centimeter. CTs /PETs have a difficult time picking up spots and details of spots that are less than one centimeter. If I recall correctly, the medical community categorizes a mass as >/=3 cm (30 mm), and a nodule as <3 cm (30 cm).
    The beginning of my story is similar to yours, but our diagnoses may be very different. I had a 1.3 cm (13 mm) nodule that was spiculated and lobulated. It was first discovered by x-ray, and followed-up by CT. Due to my low risk demographic and exposure history, my medical providers chose to ignore it. I persisted, and found a pulmonologist who ordered a PET and subsequently a bronchoscopy, which diagnosed my NSCLC. 
    I spent hours researching lung diseases prior to my diagnosis--I'm clearly not an expert, but your nodule might not be cancer. People have nodules that are completely benign. I am the worst follower of my own unsolicited advice, but try to focus on pleasant activities, and avoid getting caught up in the "lung cancer hole" of the internet this week. Easier said than done, I know. 
    When you get back with the doctor, remember that you are your own best advocate. Be persistent if you feel they are putting you off. However, since your doctor ordered a PET, it doesn't sound like they are putting you off. Is your doc a general practitioner, a pulmonary doc, a thoracic surgeon, or an oncologist?
    Meloni
  25. Like
    Meloni got a reaction from Mally in Mom, 64, dx w IIIa NSCLC   
    Hi Ktamdgirl,
    I'm sorry about your mother's diagnosis. Like Tom says, you're at a wonderful facility for treatment. 
    February of 2016, I was diagnosed with Stage IIIA adenocarcinoma. The primary tumor was in my right middle lobe and only measured 13mm (1.3cm), and three mediastinal lymph nodes were positive (I'd have to check my labs to recall the specific ones). 
    I ultimately received treatment similar to your mother's current plan. My radiation was received concurrent with chemo (same combo of chemo as your mom), because I had no pre-existing barriers. Also, I was initially a non-surgical candidate, so my chemo was split during treatment. I received two rounds pre-surgery, and two rounds post-surgery. 
    I like Tom's description of the doctor's ganging up on one another. That is similar to my team as well. Sometimes the oncologist and radiologist gangs up on my (extremely talented) surgeon to operate on something, and he concedes, but then Dr. Surgeon (who is very lung cancer oriented), turns around and convinces Dr. Oncologist to put me on the TKI that they were hesitating on. 
    ANYWAY, I'm digressing. My point is, they have a plan for for treatment, and depending on variables, the plan might change. For example, if your mom needs an extra break in between chemo sessions to recover her blood counts, they already know it's a possibility. If she needs extra help working through the nausea and fatigue, they've got resources for that. 
    Sorry I have to cut this off, have to leave for an appointment. You are very fortunate to be at a fantastic treatment center! Hope to hear from you soon! <3
     
     
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