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Meloni

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  1. Like
    Meloni reacted to Lbelle78 in Waiting too long?   
    Thank you Meloni, good advice and for sharing your experience. Just the thought of surgery in general horrifies me. I want to be here for my family, and I worry about everything from making it through to potential complications afterwards. All of this is like a terrible dream. Praying and trying to trust Gods plan.
  2. Like
    Meloni got a reaction from Lbelle78 in Waiting too long?   
    April 10th is not far away, and in my experience, they usually schedule surgery very quickly once the consult is completed.
    I mentioned on another thread that my VERY talented thoracic surgeon does perform VATS, but had to perform open surgery in my case. I was terrified, but he was honest and forthcoming about the procedure, and I actually recovered and was sent home from the hospital a day earlier than expected. The staff was amazing, professional, and kind. 
    IF your 2nd opinion surgeon recommends the same, I assure you the experience is manageable and we can help walk you through it. <3 
    Like the others said, it's important to trust your surgeon, whomever you choose. my husband and I were very comfortable with the surgeon and his capabilities. My husband gets a kick out of watching him come out of surgery to chat, because he sees the surgeon is doing what he loves, and God's calling. 
    I will ill keep my fingers crossed that your 2nd opinion is able to recommend a VATS!
    Meloni 
     
  3. Like
    Meloni got a reaction from BridgetO in Waiting too long?   
    April 10th is not far away, and in my experience, they usually schedule surgery very quickly once the consult is completed.
    I mentioned on another thread that my VERY talented thoracic surgeon does perform VATS, but had to perform open surgery in my case. I was terrified, but he was honest and forthcoming about the procedure, and I actually recovered and was sent home from the hospital a day earlier than expected. The staff was amazing, professional, and kind. 
    IF your 2nd opinion surgeon recommends the same, I assure you the experience is manageable and we can help walk you through it. <3 
    Like the others said, it's important to trust your surgeon, whomever you choose. my husband and I were very comfortable with the surgeon and his capabilities. My husband gets a kick out of watching him come out of surgery to chat, because he sees the surgeon is doing what he loves, and God's calling. 
    I will ill keep my fingers crossed that your 2nd opinion is able to recommend a VATS!
    Meloni 
     
  4. Like
    Meloni reacted to lsaut in Lost   
    Yes - we brought it up in February and understandably were instructed to keep an eye on his symptoms (at that point weight loss was very minimal and cough was less severe, skin was good). In the four weeks since that appointment, we went on a planned family vacation and upon arriving home Tuesday, I called his family doctor. He was so weak on vacation - we even used a wheelchair. This was a huge change and I know it was a shock for us all. He brought many meals back up on vacation, and I don't know if it was because of vacation, or the coughing, or new nauseousness. He's eating so much less in the last month. My worry is that his last CT scan, in February, was only chest and throat (where his tumours have been) but the last MRI was in August, so we don't know about mets beyond chest and throat right now. There are so many things that could be going on. I don't understand what bloodwork can or cannot show, and frankly, I haven't educated myself to the fullest extent on those details because there is just too much to know. I've left it to the medical professionals to guide us along. 
    My plan is to call the oncologist (or have the Family doctor call) after Tuesday's appointment. The oncologist is three hours away but is amazing and I know that they will help how and when they can. I'm delicately insisting that he see his family doctor (until now I've accepted his wishes to only see the oncologist regularly). I am not going to the appointment with him (I've only missed one or two in the last 1.5 years, but I think he needs to do this one on his own). The nurses are good to speak to me afterwards. I spoke to his family nurse earlier today and outlined all of my concerns. I was just notified that they are able to do a chest xray tomorrow and have ordered bloodwork for Monday. He is trying so hard to maintain his daily activities and functions but it is increasingly obvious that this is a struggle. Due to family turmoil, his divorce from my mom, and not having a huge social circle to begin with, he only has a handful of other people and honestly, it will be outside my comfort zone to reach out to them, but I am going to start doing so shortly. He needs visitors and unfortunately, I can't drop everything in the evenings and on the weekends, even though I want to. 
    I appreciate the responses SO MUCH. It's nice to know I'm not alone. Thank you. 
     
  5. Like
    Meloni reacted to lsaut in Lost   
    As follow up, he admitted to me Friday night that he has white stools and dark orange urine. He's had hiccups for days and is still very yellow. Something must be going on with his liver. Helps explain the increased confusion as well, about which he is very defensive. Blood work tomorrow and I'm certain Tuesday the family doctor will be pressing the liver issue. I'll call the oncologist tomorrow morning as well. I am looking at startinf compassionate leave after Easter but will see what the next few days bring. 
  6. Like
    Meloni got a reaction from BridgetO in Lost   
    Isaut,
    I'm so sorry for your situation. You are clearly overwhelmed, and who wouldn't be? Like you said, being caretaker, landlord, daughter, griever, full-time employee, wife, and mother all at once isn't something anybody can take on long-term indefinitely. 
    One thing I wanted to ask you about are his recent symptoms and health:  if I read correctly, he finished chemo in December, but has had continuous symptoms of a "cold" since that time. He met with the oncologist in February, but after that appointment occurred, his eyes and skin began to take on a green/yellow hue, his appetite has decreased, and his cough became more productive? I would definitely bring this up with the family doctor on Tuesday, but also, don't wait until May to notify the oncologist of these symptoms. I go to my oncologist regularly for symptoms. The oncologist cannot help if they don't know what's going on. <3
    Regarding his anger and frustration: I am not in his head, nor his heart, but I can tell you that from my experience cancer, losing control of your life, feeling like a burden to loved ones, and dealing with feelings that can't be shared with family members can be very frustrating. Does your father have any peers to visit with? Is he a veteran? If so, there will be local groups that would welcome him. Does he have any fraternal connections? Many cancer centers have support groups--those can be a great resource. A church men's group might work as well, if you are connected to one. A peer group, or even just one peer, can bring satisfaction to his life, which in turn might relieve some of the frustration and anger, or the manner in which it's directed. 
    And you, dear one: please, please don't forget to take care of yourself. This is a tremendous struggle you are traveling. Vent away. Love your husband. Allow him to love you. Hug your precious child. I'm glad you are looking into Hospice services. They have wonderful care, and you need respite, stat!!!
    Meloni
    P.S. I didn't mean to provide a giant post of unsolicited advice. You are right in that sometimes there are no clear answers. I just feel for you so much. You are a wonderful human, and doing so much. It's obvious you love your father and your family. Please don't feel guilt in refilling your tank so you can continue spreading that wonderful love in our world. God bless you. 
     
     
  7. Like
    Meloni got a reaction from Tom Galli in Lost   
    Isaut,
    I'm so sorry for your situation. You are clearly overwhelmed, and who wouldn't be? Like you said, being caretaker, landlord, daughter, griever, full-time employee, wife, and mother all at once isn't something anybody can take on long-term indefinitely. 
    One thing I wanted to ask you about are his recent symptoms and health:  if I read correctly, he finished chemo in December, but has had continuous symptoms of a "cold" since that time. He met with the oncologist in February, but after that appointment occurred, his eyes and skin began to take on a green/yellow hue, his appetite has decreased, and his cough became more productive? I would definitely bring this up with the family doctor on Tuesday, but also, don't wait until May to notify the oncologist of these symptoms. I go to my oncologist regularly for symptoms. The oncologist cannot help if they don't know what's going on. <3
    Regarding his anger and frustration: I am not in his head, nor his heart, but I can tell you that from my experience cancer, losing control of your life, feeling like a burden to loved ones, and dealing with feelings that can't be shared with family members can be very frustrating. Does your father have any peers to visit with? Is he a veteran? If so, there will be local groups that would welcome him. Does he have any fraternal connections? Many cancer centers have support groups--those can be a great resource. A church men's group might work as well, if you are connected to one. A peer group, or even just one peer, can bring satisfaction to his life, which in turn might relieve some of the frustration and anger, or the manner in which it's directed. 
    And you, dear one: please, please don't forget to take care of yourself. This is a tremendous struggle you are traveling. Vent away. Love your husband. Allow him to love you. Hug your precious child. I'm glad you are looking into Hospice services. They have wonderful care, and you need respite, stat!!!
    Meloni
    P.S. I didn't mean to provide a giant post of unsolicited advice. You are right in that sometimes there are no clear answers. I just feel for you so much. You are a wonderful human, and doing so much. It's obvious you love your father and your family. Please don't feel guilt in refilling your tank so you can continue spreading that wonderful love in our world. God bless you. 
     
     
  8. Like
    Meloni got a reaction from Tom Galli in Waiting too long?   
    April 10th is not far away, and in my experience, they usually schedule surgery very quickly once the consult is completed.
    I mentioned on another thread that my VERY talented thoracic surgeon does perform VATS, but had to perform open surgery in my case. I was terrified, but he was honest and forthcoming about the procedure, and I actually recovered and was sent home from the hospital a day earlier than expected. The staff was amazing, professional, and kind. 
    IF your 2nd opinion surgeon recommends the same, I assure you the experience is manageable and we can help walk you through it. <3 
    Like the others said, it's important to trust your surgeon, whomever you choose. my husband and I were very comfortable with the surgeon and his capabilities. My husband gets a kick out of watching him come out of surgery to chat, because he sees the surgeon is doing what he loves, and God's calling. 
    I will ill keep my fingers crossed that your 2nd opinion is able to recommend a VATS!
    Meloni 
     
  9. Like
    Meloni got a reaction from Mally in Waiting too long?   
    April 10th is not far away, and in my experience, they usually schedule surgery very quickly once the consult is completed.
    I mentioned on another thread that my VERY talented thoracic surgeon does perform VATS, but had to perform open surgery in my case. I was terrified, but he was honest and forthcoming about the procedure, and I actually recovered and was sent home from the hospital a day earlier than expected. The staff was amazing, professional, and kind. 
    IF your 2nd opinion surgeon recommends the same, I assure you the experience is manageable and we can help walk you through it. <3 
    Like the others said, it's important to trust your surgeon, whomever you choose. my husband and I were very comfortable with the surgeon and his capabilities. My husband gets a kick out of watching him come out of surgery to chat, because he sees the surgeon is doing what he loves, and God's calling. 
    I will ill keep my fingers crossed that your 2nd opinion is able to recommend a VATS!
    Meloni 
     
  10. Like
    Meloni got a reaction from LaurenH in Lobectomy robotically??   
    I had open lobectomy to my right middle lobe last year. My surgeon is AMAZING. He does VATS, but was unable to do it in my case--I can't quite remember why (anatomy, lymph nodes, my previous treatment--I can't recall). 
    Nothing wrong with with getting a second opinion. Studies show better outcomes when we see surgeons who specialize in these surgeries, and do LOTS of them. 
    Meloni
  11. Like
    Meloni got a reaction from Melissa Blevins in Terrified newbie with questions   
    I agree with the others about getting seen sooner. I was diagnosed last year at age 40, and like you an atypical demographic for lung cancer. I got the run around a few times before finding a wonderful pulmonologist who scheduled me in the following day. Don't let the front desk schedulers put you off. Many don't know the difference between routine and priority needs. Make sure you speak with the doctor's nurse. Tom's idea of having your PCM advocate for you can be helpful as well. Also, how many pulmonologists are in your coverage area? 
    Please follow up. I hope to from you soon. <3 
  12. Like
    Meloni got a reaction from Lbelle78 in Lobectomy robotically??   
    I had open lobectomy to my right middle lobe last year. My surgeon is AMAZING. He does VATS, but was unable to do it in my case--I can't quite remember why (anatomy, lymph nodes, my previous treatment--I can't recall). 
    Nothing wrong with with getting a second opinion. Studies show better outcomes when we see surgeons who specialize in these surgeries, and do LOTS of them. 
    Meloni
  13. Like
    Meloni reacted to Mister Whiskers in It's Me...   
    My name is Eric.  I'm 44, quit smoking about 16-months ago right about the same time I started having chest pains from GERD.  I calculate I have about 30-pack-years.  I get my healthcare from the VA.  This last week I've had the flu with a post nasal drip and coughing.  I also have panic disorder and often overreact to the smallest of symptoms and go to the ER to check out my heart and get an EKG.  I'm always Okay.
    Yesterday, I went to get myself checked.  My heart is all good.  They did a chest x-ray to look for other causes of the chest pain, which I'm certain was sore muscles from all the coughing and sneezing.  The doctor told me that they found multiple items in my lungs that could be scar tissue from a previous infection.  He also said that a previous X-Ray taken in August showed nothing.  My brain went straight to lung cancer.  He said it's usually nothing, but to have my primary doctor follow up with an X-Ray in a few months just to make sure it's nothing bad.  I pressed him for chances asking "better than 90% I've got nothing to worry about?".  He readily agreed with that percentage.  When I left I read the paperwork and it said "Solitary Pulmonary Node" and nothing else.
    So I've been Googling all of that, going from one terrifying piece of information to the next, looking for hope that maybe the X-Ray just picked up phlegm.  It's like everything I read tells me I have a 50% chance of being dead in 5-years.  I know that's not true, but still, I hate WebMD and all of its cousins.
    I looked at some of the other threads before introducing myself.  I know a lot of people here are in far worse places than I am.  I think the problem I have is that I'm so afraid to die of something like cancer or heart disease because it would mean leaving my wife behind.  She was disabled when we were newly-weds and hasn't worked in 20-years.  I've always taken care of her.  We have no kids or other family to help, just some friends who would give it the old college try.  I don't even know if she could collect my social security benefits.
    I'll hit up my VA team on Monday and see what happens.  I'll update with what I find out.  If it all does turn out to be nothing, I'll stick around anyways.
  14. Like
    Meloni got a reaction from Tom Galli in 8MM nodule right upper lung - getting very scared   
    I'm reading about your beautiful diet of nuts, berries and fish while stuffing my face with a Quarter Pounder w/Cheese. 
    The others have already provided excellent advice. I'm glad your visit with the pulmonologist is coming up on the 28th. The wait time tests my patience, but my oncologist always reminds me that the window of opportunity will not be lost between now and then.  
    Despite the CT, I remain hopeful that your nodule is benign. It does need clinical evaluation, and I'm glad you're seeing this through. God forbid, the nodule needs obliteration, early detection is the key to kicking it in the butt.  You are so very brave to do this. You are not doomed. 
    Finally, I hope you don't beat yourself up about your smoking past. Celebration of your non-smoking present sounds a lot more interesting. <3
    Meloni
     
  15. Like
    Meloni got a reaction from Tom Galli in Newbie   
    That's fantastic!!!! Woot woot!!!
  16. Like
    Meloni got a reaction from LaurenH in Newbie   
    That's fantastic!!!! Woot woot!!!
  17. Like
    Meloni reacted to Mally in Newbie   
    Thats great news !!

    Sent from my SM-N920I using Tapatalk


  18. Like
    Meloni reacted to Tom Galli in Newbie   
    Wonderful news J L W!  Do the clean scan dance.
    Stay the course.
    Tom
  19. Like
    Meloni reacted to J L W in Newbie   
    Followup - Review
    CT Scan = 9mm lower lobe - spiculated, lobulated with irregular borders - non calcified - 
    Met with the doctor yesterday after my PET scan. He said there was no uptake and no lymph nodes involved (Im happy about that) which gives us time to see if it grows over 3 months. So I'm scheduled for another CT in 90 days. I kinda liked his initial approach which was more aggressive.
     
     
     
  20. 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
  21. Like
    Meloni reacted to J L W in Newbie   
    Hi, Very sorry guys. 
    The nodule is 9mm.  I see the doc again Monday afternoon. He told me he thought is was a 50/50 chance.
    i appreciate the comments. I'll let you know what happens.
  22. Like
    Meloni got a reaction from J L W 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
  23. Like
    Meloni got a reaction from LaurenH in Its been a hell of a month   
    Hi Sydney,
    Holy cow, what a month! I'm so sorry you need to be here, but I'm so happy you found us. There are many people here who have survived against all odds. I found that to be a comfort against the stats when I was first diagnosed a year ago. 
    May I ask what the result of your genetic mutation was? 
    Meloni
  24. Like
    Meloni reacted to Tom Galli in Terrified newbie with questions   
    Lbelle,
    Good news on your appointment.  Let us know the results of the bronchoscope when you receive them.  Hopefully, this will all be leftover stuff from your pneumonia.
    Stay the course.
    Tom
  25. Like
    Meloni reacted to Lbelle78 in Terrified newbie with questions   
    Thank you to everyone, you have all been so kind and helpful. Was able to get a followup appt.for in the morning, and our local nurse practitioner called my husband this morning to check on me and found out about our situation. She used to work for a pulmonologist at a large medical center nearby and is getting me an appt. for next week! 
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