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Curt

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  1. Like
    Curt reacted to MarieE in Another newbie ... Still a bit in shock   
    Just a quick update ... Just a couple of days away and my husband seems to be doing great. I'm the one who's having the nightmares and problems sleeping. I think he's better at denial than I am. 😉 Haven't had much time on the computer later but I'll definitely be looking for the caregivers' group. I don't expect this is going to get any easier for awhile. We're going out for a big brunch at one of our favorite places tomorrow and then just trying to get everything ready for early Tuesday morning. Hoping the surgeon is getting much better sleep than I am these days!
  2. Like
    Curt got a reaction from LouT in Another newbie ... Still a bit in shock   
    My thoughts and prayers will be with you both.  Any specific questions on the surgery and recovery just ask.   
  3. Like
    Curt got a reaction from LouT in Not Sleeping since DX   
    Hi @DarlaK  I had a similar path as you except no chemo after surgery.  The quiet times are often the hardest.  It’s perfectly normal to be worried.  You’ve been through a lot.  Don’t beat yourself up over it.  Hang in there.  
  4. Like
    Curt got a reaction from Roz in Scan Time Again   
    Don’t let it steal a minute of joy.  Enjoy Maine.  Positive thoughts.  
     
    Take the ferry to Cumberland Island if you have a chance while in Amelia Island.  Even stay there for a night if you can.  It’s a beautiful place.  My wife and I got engaged there.  
  5. Like
    Curt reacted to Rower Michelle in Scan Time Again   
    Thank you all for the continued support! Tom Petty had to right-  but I won’t back down, stand my ground. 
    MB we’ll be in this together on the 25th.  I think there’s something about these “anniversary” scans.  For me it’s one year on targeted therapy. 
    I’m moving through the packing list this week which helps the time go by.  Lobsters and lighthouses for me next week! We’re celebrating our 25th wedding anniversary where we honeymooned in Maine. It will be a great trip! 
    Today it’s the Living with Lung Cancer Support Group, we’ve got the FOX News 4 health and Wellness expert to come and talk with us.  Then I’m off to yoga  🧘‍♀️ 
    I’m so glad to have you guys! Happy weekend!
    Michelle
     
     
  6. Like
    Curt got a reaction from Rower Michelle in Scan Time Again   
    Don’t let it steal a minute of joy.  Enjoy Maine.  Positive thoughts.  
     
    Take the ferry to Cumberland Island if you have a chance while in Amelia Island.  Even stay there for a night if you can.  It’s a beautiful place.  My wife and I got engaged there.  
  7. Like
    Curt got a reaction from LouT in Not really sure if I should be here or not   
    Hello David.  I’m so sorry you’ve had to find this group.  The diagnosis phase of lung cancer is very scary and somewhat vague until a biopsy can be performed.  As you’ve identified they can assume a mass is something but often will wait for a biopsy to confirm it.  Lungevity has some terrific resources I encourage you to read.  Please know that much of the statistics you read online is dated information.  For example five year survival rate data is based on people diagnosed five years ago.  There have been a lot of advancements in lung cancer treatments over the last five years and those statistics are changing.   Google can be a scary place for info.  I encourage you to ask your questions here and use the Lungevity site for the resources you need.  If it is cancer there are treatments that can alleviate some do the symptoms you are experiencing.  
  8. Like
    Curt reacted to MarieE in Another newbie ... Still a bit in shock   
    Thanks, Tom. The surgeon did mention the possibility of post surgery chemo. He also said they will check the lymph nodes for cancer as well and also do biomarker testing. Hoping for the best and trying to stay calm ... The bone scan and brain MRI came back clean so that is definitely encouraging.
  9. Like
    Curt got a reaction from Roz in Another newbie ... Still a bit in shock   
    Hello’s @MarieE   I’m sorry to hear about your husbands diagnosis.  I know how he feels.  I was confronted with doing a wedge resection without actually knowing if the nodule I had was cancer.  During the resection they determined it was cancer and did a full upper right lobe lobectomy via VATS.  My lymph nodes were clear and it did not spread anywhere else.  I was terrified.  I had visions of significantly decreased quantify of life, walking around on oxygen and being generally debilitated from the surgery.  None of that was the case.  I am a little over seven months out and have recovered fully in terms of lung function.  I’d say I was fully recovered with lung function at around four months.  I was up and moving around normally after four weeks.  I do still have some numbness and tightness around the surgery site.  I am completely cancer free and have not required any follow up treatments.   If the tumor is close to the heart they may want to do an “open” surgery which requires a larger incision.  The recover time for that is a bit longer but the lung function part should be the same.  I know the word lucky and cancer don’t often get used together but if your husband has surgery as an option he is lucky.  It is one of the most affective forms of treatment for lung cancer.
  10. Like
    Curt reacted to Tom Galli in Information Needed   
    Dave,
    I am so very sorry to learn of Melissa's condition. The biopsy report and other diagnostic tests will give a good indication of next steps. My suggestion for you is to read into the disease so you can understand the medical vocabulary and help make important decisions.  Start here with information about diagnosis on our Lung Cancer 101 synopsis. Pay particular attention to imaging tests and biomarker testing.  
    A lung cancer diagnosis is made by a pathologist examining tissue under a microscope. The results of this visual process, called histology, yields the type and subtype of lung cancer.  There are two types: small cell and non small cell. But within the non small cell type are a number of subtypes: adenocarcinoma, squamous cell and large cell. The type identification is important because each has a different treatment approach.
    Most who have a biopsy have tissue sent to a lab for further biomarker testing.  This is extremely important and ensure your oncologist and or pathologist knows you want the biopsy tissue samples sent for further laboratory testing.  This testing is vital because new, very successful treatments are now available in the form of Targeted Therapy and Immunotherapy. While I've hyperlinked information explaining these new treatments, you shouldn't spend too much time at this juncture reading into them. Just know that they are available and the biomarker testing is the key to availability. So, point one when you get your oncologist on board is to ensure biomarker testing is performed on the biopsied tissue.
    Your wife likely had a CT scan that led to the need for a biopsy.  You didn't reveal how many suspected tumor sites were present on the scan but she will likely have more imaging scans to map the position of metastatic areas. Hopefully, you are dealing with only a single nodule or mass.  These further imaging tests may be a PET scan, a MRI of the brain and perhaps a bone scan.  The results of all the diagnostic imaging studies allow for a stage determination.  Here is information on non small cell lung cancer staging. Lung cancer staged at I through IIIA may allow for surgical resection of the single mass or tumor.  Stage IIIB may or may not be surgically treated.  Stage IV is normally not treated with surgery. Similarly, limited-stage small cell lung cancer may be treated with surgery while extensive-stage is not.
    So, the important information or the outcome of diagnostics is to yield a type and stage for Melissa's lung cancer.
    I've just given you a full plate to digest and so I'll stop the information disclosure now. But while you read in and discuss with Melissa what you've learned you should know that breakthrough treatments have been discovered within the last 3 years on Targeted Therapy and Immunotherapy that are moving the survival needle toward life.  Moreover, I was diagnosed Stage IIIB and then Stage IV with progression to my left lung after my right lung was removed almost 16 years ago. If I can live, so can Melissa.
    Stay the course.
    Tom
     
  11. Like
    Curt reacted to MarieE in Another newbie ... Still a bit in shock   
    Thank you. I'm sure we'll be back with some. Right now our biggest concern is that the surgery may not be able to be done robotically, but we will deal with whatever comes. And heck, if we can't dive together anymore, that will give us time and money to use elsewhere once he has recovered. 😉
  12. Like
    Curt got a reaction from MarieE in Another newbie ... Still a bit in shock   
    My thoughts and prayers will be with you both.  Any specific questions on the surgery and recovery just ask.   
  13. Like
    Curt got a reaction from MarieE in Another newbie ... Still a bit in shock   
    He’ll still be able to be active after some rehabilitation.  My lung capacity is the same as it was pre surgery.  Scuba diving may be a longer term challenge, especially if you are going deep.  It would be an awesome goal to work towards though.  Definelty would inspire others.
  14. Like
    Curt got a reaction from MarieE in Another newbie ... Still a bit in shock   
    Hello’s @MarieE   I’m sorry to hear about your husbands diagnosis.  I know how he feels.  I was confronted with doing a wedge resection without actually knowing if the nodule I had was cancer.  During the resection they determined it was cancer and did a full upper right lobe lobectomy via VATS.  My lymph nodes were clear and it did not spread anywhere else.  I was terrified.  I had visions of significantly decreased quantify of life, walking around on oxygen and being generally debilitated from the surgery.  None of that was the case.  I am a little over seven months out and have recovered fully in terms of lung function.  I’d say I was fully recovered with lung function at around four months.  I was up and moving around normally after four weeks.  I do still have some numbness and tightness around the surgery site.  I am completely cancer free and have not required any follow up treatments.   If the tumor is close to the heart they may want to do an “open” surgery which requires a larger incision.  The recover time for that is a bit longer but the lung function part should be the same.  I know the word lucky and cancer don’t often get used together but if your husband has surgery as an option he is lucky.  It is one of the most affective forms of treatment for lung cancer.
  15. Like
    Curt got a reaction from BridgetO in Another newbie ... Still a bit in shock   
    Hello’s @MarieE   I’m sorry to hear about your husbands diagnosis.  I know how he feels.  I was confronted with doing a wedge resection without actually knowing if the nodule I had was cancer.  During the resection they determined it was cancer and did a full upper right lobe lobectomy via VATS.  My lymph nodes were clear and it did not spread anywhere else.  I was terrified.  I had visions of significantly decreased quantify of life, walking around on oxygen and being generally debilitated from the surgery.  None of that was the case.  I am a little over seven months out and have recovered fully in terms of lung function.  I’d say I was fully recovered with lung function at around four months.  I was up and moving around normally after four weeks.  I do still have some numbness and tightness around the surgery site.  I am completely cancer free and have not required any follow up treatments.   If the tumor is close to the heart they may want to do an “open” surgery which requires a larger incision.  The recover time for that is a bit longer but the lung function part should be the same.  I know the word lucky and cancer don’t often get used together but if your husband has surgery as an option he is lucky.  It is one of the most affective forms of treatment for lung cancer.
  16. Like
    Curt got a reaction from LouT in Hello   
    Hi @mark111111 unfortunately many of us can relate on some if not all of what you are going through.  Some ER Docs can definitely  use some bed side training.  I had an ER doc completely neglect to tell me about a nodule that was peripherally found on an abdominal scan.  Luckily my mother is a nurse, and nosy, and read the report and saw it written deep into page four.  I’ve now gotten into the habit of reading ALL of my medical reports and asking questions about whatever I don’t understand.  I hate that it was there but I’m so grateful she found it.  That was two years ago.  I had surgery seven months ago to remove the nodule, it was very small.   So far all is good.  Brain Mets are tougher but it can be done.  Advancements in the last three years and others happening every day are changing the statistics quickly.  You’ve got the right approach.  You are still here.  Live your life.  Keep your sense of humor and battle on.  You’ve found a group of people who get it and are rooting for you.  
  17. Like
    Curt got a reaction from LouT in Another newbie ... Still a bit in shock   
    Hello’s @MarieE   I’m sorry to hear about your husbands diagnosis.  I know how he feels.  I was confronted with doing a wedge resection without actually knowing if the nodule I had was cancer.  During the resection they determined it was cancer and did a full upper right lobe lobectomy via VATS.  My lymph nodes were clear and it did not spread anywhere else.  I was terrified.  I had visions of significantly decreased quantify of life, walking around on oxygen and being generally debilitated from the surgery.  None of that was the case.  I am a little over seven months out and have recovered fully in terms of lung function.  I’d say I was fully recovered with lung function at around four months.  I was up and moving around normally after four weeks.  I do still have some numbness and tightness around the surgery site.  I am completely cancer free and have not required any follow up treatments.   If the tumor is close to the heart they may want to do an “open” surgery which requires a larger incision.  The recover time for that is a bit longer but the lung function part should be the same.  I know the word lucky and cancer don’t often get used together but if your husband has surgery as an option he is lucky.  It is one of the most affective forms of treatment for lung cancer.
  18. Like
    Curt reacted to LUNGevityKristin in Meet Ina®, Your Personal Intelligent Nutrition Assistant   
    LUNGevity is excited to introduce you to Ina! You can communicate with Ina® 24/7 to receive personalized, clinically appropriate, and “on demand” nutrition support and guidance.  All you do is send a text, there are no appointments necessary or phone calls to make.  When you’re navigating a lung cancer diagnosis, eating a healthy diet can help you feel better, maintain your strength, and speed your recovery. 
    Learn more and get started here: https://lungevity.org/for-patients-caregivers/support-services/meet-ina®-your-personal-intelligent-nutrition-assistant
    Ina® is a knowledge-based personalized nutrition technology expert platform for people with cancer. Ina®’s knowledge and advice is based on scientific evidence and the training of oncology-credentialed registered dietitians, nurses, and doctors who are experts in the needs of cancer patients.

  19. Like
    Curt reacted to Tom Galli in Kate7617   
    Kate,
    I can't understate the importance of a lung cancer survivor receiving a flu shot. As a one lung survivor, any cold can and often does turn into a chest-congestion nightmare so I get my flu shot. I've also had both types of pneumonia vaccinations and am in fact current on all my vaccinations. So, I would definitely recommend you receive the shot.
    Stay the course.
    Tom 
  20. Like
    Curt reacted to Tom Galli in Another newbie ... Still a bit in shock   
    Marie,
    You are asking about proton therapy or stereotactic radiation as an alternative to a single tumor discovery in a tricky location. I've had both surgery and CyperKnife (stereotactic radiation) treatments by the way and my surgery was a complete pneumonectomy--removal of my right lung by conventional means.
    I believe surgery is the best course of action and represents the best possible outcome for minimizing recurrence.  Why?  A surgeon can actually see the tumor to be resected and seeing the tissue allows greater precision in removing the entire tumor along with a safety margin of non cancerous tissue.  While proton therapy is very precise in delivering tumor-killing doses, the application is based on imaging technology, not a visual examination. Imaging technology can be very accurate but I believe it is not as effective as seeing the tumor as it presents in the lung.
    I had a complete pneumonectomy removing my right lung. I had suture complications from that surgery that required two more follow-up thoracic surgery procedures but my initial recovery period was about 5 days in the hospital and 5 recovery days at home. 
    I completely understand the concern about lifestyle after surgery. I'm not a diver so I couldn't give an opinion of what might be possible post surgery. But surgery gives one the best chance of avoiding a recurrence of lung cancer and that indeed is the risk of using only proton therapy or stereotactic radiation. I would ask your husband's consulting doctors if surgery is an available treatment method if there is a recurrence after proton therapy or stereotactic radiation. One more point on proton therapy: it is a very expensive treatment and medical insurance companies are very reluctant to approve it.
    Stay the course.
    Tom
  21. Like
    Curt reacted to LouT in Hello   
    Mark111111
    Welcome to the forum and sorry you need to be here.  I understand perfectly the post-diagnosis anxiety.  After a routine CT Scan a nodule was found on my right lung that led to more testing (CT Biopsy, PET Scan, Open Thoracic Biopsy) that finally confirmed NSCLC Squamos cancer in my lower right lobe.  I had the lobe removed in May and a few months later I'm blessed to be back to 5 miles/day on my treadmill and a 40 minute weight workout six days a week.  Yes, there was a recovery and some tough spots along the way, but the people in this forum became family to me.  Nights when I thought my life was over they shared stories of hope and some of the tough times they went through to become NED (No Evidence of Disease).  Some even shared (in detail) their surgical experiences so that I had a template to follow and I knew what to expect before, during and after the hospital stay.  Knowledge and the support of these folks was the balm that calmed me regarding my disease, treatment and recovery.  They listened to my complaints, answered my questions and lifted me during some sad times.  

    All those people, including me, are here and can answer your questions and show our support for you through your dark times.  So, take some time to read other posts, you'll learn a lot in doing so.  Ask questions, understand what your doctors are planning and be a part of your treatment team, focus on each day and stay away from Dr. Google and internet stats on survival rates (hint: They aren't accurate as they are a 5-year running average and do not indicate what is presently occurring).  This is a tough journey, but you can get through this.  You will not be alone now that you've joined us.  Please keep us updated and remember that no question is silly or too small to ask.  Meanwhile you'll be in our thoughts as you go through this.

    Lou
  22. Like
    Curt reacted to RonH in Hello   
    Your own "team" will certainly help with your concerns and worries of the "unknown" and I would have to agree with you about the ER Docs. They are there simply to get you through the "emergency" as best and quick as possible and then hand you off for treatment to others, which will be more personalized and normally as it seemed to me to be more compassionate. I know several years ago when my wife had to go to the ER, after they stopped the bleeding, the ER doc walked in and said that she was stable, was being admitted, that she had uterine cancer, and then proceeded to walk out the door not to ever be seen or heard from again (except for his bill later). While I am sure that everyone is different during their journeys; you may likely also encounter Thoracic Surgeons, Medical Oncologists, Radiation Oncologists, Pulmonologists, Interventional Radiologists, as well as Imaging Radiologists and Pathologists (both rarely met as they are normally behind the scenes), and of course all the nurses, technicians and as well as their staffs. I've encountered them all in my journey over the past 18 months with my NSCLC and have the utmost respect for them all, but of course some are more personable and patient friendly than others. There is actually a quite large number of medical people that will be supporting you/us in this fight and sometimes it does seem very overwhelming. Its always nice to have others like everyone (actual patients) on here to reach out to as we're in the same or a similar battle with cancer. The phrase "Been There, Done That" can certainly be applied here.  
    -Ron
  23. Like
    Curt reacted to Rower Michelle in Hello   
    Hi Mark,
    Welcome. I was diagnosed Stage IV ALK Positive NSCLC a year ago at the age of 51.  You’re not alone, we all understand the darkness of the early days. It’s impossible to articulate outside of this inner circle. 
    Managing the diagnostic process and communicating with others is really hard with “the death stare”.  I’d like to say to you  that better days are coming. Once you’re through all of these tests and the treatment plan is implemented, somewhere along the line the will to fight kicks in.  It will get better.  Right now is an emotional roller coaster. 
    It’s smart to take some time off from work (even more so if your job is stressful or physically taxing). This is a time to make your treatment the number one priority by saying goodbye to toxic people. You’ll find support coming from the least expected places.  Keep your sense of humor going as people around you will take your cue. It takes time to get to the “new normal”.  
    Lou has given you some great advice- Dr Google  is not our friend. There have been more advances in lung cancer treatment in the last three years than in the last five decades.  Some days in the beginning it’s an hour by hour type of coping. That’s normal.  It’s easy to get ahead of ourselves during the turmoil of this time.  Trust your medical team.  
    We’re here to support one another day by day. 
    Michelle
  24. Like
    Curt reacted to Tom Galli in Hello   
    Mark,
    Welcome here. 
    I had an ER diagnosis almost 16 years ago. I had 4 thoracic surgeries, 18 infusions of chemotherapy, 30 sessions of conventional radiation, 18 weeks of targeted therapy (pill form Tarceva) and 3 thirty-minute CyberKnife precision radiation sessions. The point of revealing all this treatment history is if I can live, so can you. 
    Stay the course. 
    Tom
  25. Like
    Curt reacted to Claudia in Another newbie ... Still a bit in shock   
    Hi MarieE,
    Welcome to the forums that none of us want to be part of. I wanted to chime in to let you know that there is hope. I was diagnosed through a pre-op tests with stage IV squamous cell with mets to the lymph nodes in my left hip. I am not a surgery candidate but after chemo and now immunotherapy I am on my way to NED. Every day there are new options for lung cancer patients and with any luck one of them will work for all of us. I just wanted to wish you and your husband the best of luck through your journey and try to stay positive. I know this is hard to do sometimes but positive thoughts, watching positive movies (Healing on Netflix for example) listening to your favorite music, quiet meditation and doing whatever makes you smile can help you stay in a good state of mind. I believe positive thoughts is some of the best medicine. Please keep us in the loop.
    Claudia
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