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Curt

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  1. 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.¬†ūüėČ
  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 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.
  4. Like
    Curt got a reaction from Roz in Another newbie ... Still a bit in shock   
    Hello‚Äôs @MarieE¬†¬† I‚Äôm 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‚Äôd 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 ‚Äúopen‚ÄĚ 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‚Äôt 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.
  5. Like
    Curt got a reaction from MarieE in Another newbie ... Still a bit in shock   
    Hello‚Äôs @MarieE¬†¬† I‚Äôm 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‚Äôd 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 ‚Äúopen‚ÄĚ 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‚Äôt 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.
  6. 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.  
  7. Like
    Curt got a reaction from BridgetO in Another newbie ... Still a bit in shock   
    Hello‚Äôs @MarieE¬†¬† I‚Äôm 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‚Äôd 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 ‚Äúopen‚ÄĚ 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‚Äôt 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.
  8. Like
    Curt reacted to LUNGevityKristin in Meet Ina¬ģ, Your Personal Intelligent Nutrition Assistant   
    LUNGevity is excited to introduce you to Ina! You can communicate with Ina¬ģ¬†24/7 to receive personalized, clinically appropriate, and ‚Äúon demand‚ÄĚ nutrition support and guidance.¬† All you do is send a text, there are no appointments necessary or phone calls to make.¬†¬†When you‚Äôre 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¬ģ-your-personal-intelligent-nutrition-assistant
    Ina¬ģ¬†is a knowledge-based personalized nutrition technology expert platform for people with cancer. Ina¬ģ‚Äôs 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.

  9. 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 
  10. 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
  11. 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
  12. 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
  13. 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 ‚Äúthe death stare‚ÄĚ.¬†¬†I‚Äôd like to say to¬†you ¬†that better days are coming. Once you‚Äôre¬†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‚Äôs 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‚Äôll 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 ‚Äúnew normal‚ÄĚ. ¬†
    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
  14. 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
  15. 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
  16. Like
    Curt reacted to Claudia in Kate7617   
    I asked my oncologist this question just the other day and I got an emphatic yes. Get a flu shot. I am at the end of fighting a cold so I'm going to wait until I'm feeling a little stronger and them get the flu shot my dr wants me to get. 
    Positive thoughts,
    Claudia 
  17. Like
    Curt reacted to RonH in Kate7617   
    Kate -
    Regarding flu shots; my Onc told me last year not to worry about it and that the benefits from the flu shot and its help preventing getting the flu far outweigh any potential risk of any chemo or Durvalumab interactions with it.ÔĽŅ I personally had my flu shot last year a few weeks after my last chemo and a few weeks before my first Durvalumab, and had no issues. The following guidelines I found online:
    These guidelines are to ensure that patients with cancer who are on treatment receive appropriate influenza immunization advice. The information is provided as a resource/guide only and does not take the place of any diagnostic, treatment plan or recommendations from a patient’s oncologist or specialists.
    1. Patients on active chemotherapy, immunotherapy (including checkpoint inhibitors) or radiation therapy can receive inactivated influenza vaccine if not medically contraindicated.ÔĽŅ
    2. Patients should not receive live attenuated influenza vaccine. This includes the intranasal form of the vaccine (e.g., FluMist¬ģ).
    3. Inactivated influenza vaccine can be given at any point during the patient’s treatment, recognizing that while they may not get the full benefit of the vaccine, it still provides some value for patients. The optimal timing is not known.
    4. For patients who have had a stem cell transplant the general guideline is that the influenza vaccine should not be given if the stem cell transplant is < four months in adults and < six months for pediatrics.
    5. Patients who are treated with rituximab, or other B-cell depleting antibodies, should not have the influenza vaccine if the rituximab dose is < four months.
    6. Patients receiving single agent checkpoint inhibitors such as PDL-1 inhibitors (e.g., durvalumab, atezolizumab) and PD-1 inhibitors (e.g., pembrolizumab, nivolumab) can receive inactivated influenza vaccine.
    7. Patients treated with CTLA-4 inhibitors (e.g., ipilimumab, tremelimumab) alone or in combination with other anti-cancer agents and those who have discontinued treatment should not have the influenza vaccine if < three months.
    8. Patients on clinical trial protocols should continue to follow instructions based on their specific protocol.
    9. Families and care providers of cancer patients should be encouraged to consider receiving an inactivated influenza immunization if not contraindicated. The live influenza vaccine is not recommended because of the high risk of influenza viral shedding.
    https://www.skpharmacists.ca/uploads/media/5bd37c3345390/sca-influenza-immunization-guideline-october-2018-final.pdf?v1
    http://www.bccancer.bc.ca/nursing-site/Documents/BC_Cancer_Provincial_Systemic_Therapy_Committee-Flu_Vaccine_Guidelines.pdf
  18. Like
    Curt reacted to Mally in Mally   
    Hello everyone I just want to let you know that I had my 44th dose of opdivo yesterday and got my scan results which were NED and i feel so happy. Tom you were right when you said the radiotherapy would fry the lymph node in my neck and it did just that ...I start on monthly infusions now so that will feel more like a normal life than every fortnight ...I wish everyone on here the best of luck and keep positive because treatments are getting better every day 
  19. Like
    Curt reacted to Isabelle49 in CT scan time again   
    Got the results of Fridays CT Scan. Mass is reduced in size to almost a quarter of it’s original size. Chemo was put on hold this week because of low ANC. I have appointment tomorrow with RadiationOnc. to see if mass now small enough for radiation. Radiation scares me more than chemo!!! Blessings.
  20. Like
    Curt reacted to Blossomsmom in We‚Äôve almost made it!   
    Back in March when my Mom was diagnosed with stage IV SCLC/NSCLC combo, her Oncologist¬†asked her what her goal¬†would be if she were to decide on treatment as opposed to letting nature take its course. My moms reply was ‚Äúto live to see my granddaughter get married on 10/19/19. Her Oncologist promised to do everything in her power to get her there. My mom started treatment the next week. We saw the Doctor yesterday for bloodwork and to discuss her upcoming scheduled Tecentriq infusion on Monday, the 2nd one since having a break due to some side effects from it. After some discussion the doctor suggested putting off Mondays treatment until the Monday after my daughter‚Äôs wedding. She said to my Mom ‚Äúyou‚Äôve worked to hard to get this far to risk having¬†¬†a¬†side effect that could keep you from your goal‚ÄĚ. My Mom agreed. So treatment is postponed until 10/21. I‚Äôm so greatful that my Mom has an Oncologist that see‚Äôs her and treats her as a living breathing human being and that she KNOWS what‚Äôs important to her. Sadly that‚Äôs something that‚Äôs missing from a lot of the doctors we‚Äôve dealt with over the past year. I don‚Äôt know if that‚Äôs because of my moms advanced age (90 going on 60!) or if that‚Äôs the just the way it is. But I know for 100% certainty that in 22 days I will walk up the isle with my Mom just before the wedding procession begins and for that, I will be forever greatful to¬†her Oncologist for making that possible.
  21. Like
    Curt got a reaction from Kate7617 in Kate7617   
    MSK has two Long Island locations.  Stony Brook also has a lung cancer center.  
  22. Like
    Curt got a reaction from judyb75 in Tick Tock - Scan Time   
    My first six month CT scan post lobectomy. ¬†Not a thought crossed my mind until I put the robe on and sat down in the CT¬†waiting room.¬†¬†Then the anxiety¬†begins.¬† Getting the IV provided some distraction. ¬†I don‚Äôt mind needles and the¬† nurse who put it in was nice. ¬†Then¬†laying there staring up at the CT Machine all the ‚Äúwhat if‚Äôs‚ÄĚ start in. ¬†On¬†to the doctors waiting room. ¬†I‚Äôm lucky that I get a CT Scan then meet with the doctor right after. ¬†The hour in between¬†is enough worry for me.¬†¬†Sitting in the waiting room. ¬†Tick Tock it‚Äôs like time¬†is frozen. ¬†From the waiting room¬†to the exam room. ¬†More waiting. ¬†More wondering and worrying. ¬†Is it taking so long because there is something wrong?¬†¬†Are they reading my CT and trying to figure out what something is on there¬†is? ¬†Is my headache from the CT Contrasts¬†or the stress? ¬†The¬†Doctor comes in. ¬†We talk for five minutes. All clear. ¬†NED. ¬†Got there at 1:50 and was gone by 3:20. ¬†I am so thankful they do it that way. ¬†The hour and a half of worry is more than enough for me. ¬†I really wish it was the same for everyone.¬† Next CT¬†is March 2020. ¬†
  23. Haha
    Curt got a reaction from Rower Michelle in This or That Tuesday: Favorite Fall Sport   
    Baseball in October if the Yankees are in it.  Football in November and December if the Giants don’t stink.  (Not sorry Eli!!).  
  24. Like
    Curt reacted to Rower Michelle in This or That Tuesday: Favorite Fall Sport   
    Football all the way! Go Giants (Sorry Eli!!)
  25. Like
    Curt got a reaction from Tom Galli in How big for biopsy?   
    Hearing you have a lung nodule and need a biopsy is terrifying.  I’m sorry you are going through that.  Please remember that the majority of lung nodules are benign (not cancer).  Also know, in the unlikely event it is cancer, that a single malignant (cancerous) lung nodule of that size is curable, often times with just surgery.  Ignore all the scary stuff you read online.   Much of it is dated information based on cancer treatments of five + years ago.  
     
    Tom has provided some really good info for you to digest ahead of your appointment.   
     
    Hang in there and check in when you need some support. 
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