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Curt

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  1. Like
    Curt got a reaction from Susan Cornett in Hello from England my name is Johnny   
    Hi Johnny.  I had an upper right lobe lobectomy three mo the ago.  I am very focused on regaining my lung capacity.  It’s been slow but I’m getting there.  
  2. Like
    Curt reacted to Laurel in Looking for some hope   
    Tom...you are a blessing to us.  You show us to fight back. Spanner- keep asking your questions here. It's amazing what help, guidance, and hope can be found from those here who are going through the same issues. Hugs and prayers.
  3. Like
    Curt reacted to Tom Galli in Looking for some hope   
    Spanmer,
    Welcome here and very sorry to learn of your dad's dx.
    You asked about pleural effusions and if they are an indicator of poor treatment outcomes. A pleural effusion is a buildup of fluid between the outer tissue of the lungs (pleura) and the chest wall. This fluid results from irritation and causes include: congestive heart failure, pneumonia and cancer malignancy among others. They are not necessarily an indication of treatment prognosis because removing the irritation (addressing malignancy) may stop the effusion.
    I recovered after two recurrences with only chemotherapy as my treatment method. I was found to have no evidence of disease (NED) after my first post surgical recurrence from 6 cycles of Taxol and Carboplatin. But the cancer recurred and again 6 more cycles of chemo knocked down the tumors .  Unfortunately, my NED stage only lasted about 6 months and I needed precision radiation to finally eliminate my lung cancer.  So chemo works, and my chemo recipe was 20 years old.  New chemo therapies work much better and actually have a chance of eliminating tumors. Here is a next treatment possibility (read the Immunotherapy paragraph). Your dad's doctors may want to explore combining conventional chemotherapy (pemetrexed-platinum types) with another course of Keytruda.
    As for recovery, I'm a 15+ year survivor of NSCLC (squamous cell) and if I can live, so can your dad.
    Stay the course.
    Tom
  4. Like
    Curt reacted to Deb W in Hello from England my name is Johnny   
    Hi Johnny,
    I think Curt and are just a couple of weeks apart on surgery.  I am determined to increase my cardio and endurance.  I started playing tennis a couple of days a week - no matches just yet.  I definitely notice the difference in my breathing and limitations.  I was just saying that I should go for a series of lessons to further develop my skill so I won't have to run so much!   It's getting a little better each week.  I've added  intervals...1 minute walk, 1 minute run  for 2 miles on the days I'm not playing tennis.  I started a free weights class 2 times a week.  At this point, I am just so happy that I can do all of these things.  My surgeon told me that after 12 weeks I should be back to normal (not sure what the new normal will be).  So, since it's been 9 weeks tomorrow, I still have 3 weeks to go.  
  5. Like
    Curt reacted to BridgetO in Prayers Answered   
    Hi Brian, My experience was, if anything, easier than Curt's. I had a lower right lobectomy by VATS. Robotic should be comparable to VATS in recovery time and challenges. I was discharged the day after my surgery with a chest drain tube in place since I hand an ongoing air leak. I had the tube in place for about 10 days. I had some pain and used opiod pain mads, but the pain mostly disappeared  once the tube was out. Any surgery involving general anesthesia is serious, but as surgery goes, this one was pretty easy.
    Curt has given you some great suggestions and I want to emphasize a few of them. WALK. I was up and walking the same day as my surgery. When I got home, I walked around my neighbohood with my chest tube and drain bag concealed under a big raincoat. Fortunately I live in Oregon where any kind of rainncoat is common!  Get a wedge pillow. You'll be more comforable iwth your whole upper body elevated to 45 degrees. At first I tried to do this wth various pillows I had, but I only ended up with a sore neck. The wedge was a relief!  Use the spirometer to keep your lungs inflated. Breathe deeply,  Cough.  Think good thoughts! 
    Ths wll probably be a lot easier than you think.
    Good luck to you!
    Bridget O
  6. Like
    Curt got a reaction from Road bum in Here we go again.   
    Smaller is good Ron!  Keep it going.  
  7. Like
    Curt got a reaction from PaulaC in Prayers Answered   
    Surgery and recovery is different for everyone.  Are you having VATS surgery?  That recovery is easier.  I am 43, reasonably good health and had  VATS.  I had surgery on Tuesday night and went home on Friday.  I was supposed to go home one Thursday but had an air pocket in my chest they wanted to watch.  I was up and walking the morning after surgery.  They encourage you to get up and move.  The more you can the quicker you can have the drainage tube removed and the quicker you go home.  I stayed home for two weeks.  My first time out was to get a hair cut.  I returned to work for a few hours here and there after three weeks.  I returned in full after four weeks.  Six weeks out I was back to normal activity.  A few suggestions and notes.  
    1. It is not as bad as you are imagining.  I envisioned myself walking around frail and on oxygen.  There was no oxygen.  I was shocked how little my breathing changed.  Capacity was different but the act of breathing wasn’t.   I have three young boys that are 6, 8 and 10.  I beat them and their friends in dodge ball three weeks after surgery.  It was me against the block. 
    2. Walk and use the spirometer before surgery to build lung capacity.  Keep doing it after.  
    3. Hospitals are loud.  I found headphones really necessary to get any rest.  You will want rest. 
    4. I was tired.  More tired than I’ve ever been.  Did I mention I have three young boys?   In the weeks after surgery I would wake up, have breakfast, walk and take a nap.  I’d wake up, have lunch, walk, take a shower than nap.  Wake up, eat dinner, walk and go back to sleep.  The extreme tired lasted for about four weeks.  
    5. You’ll want a wedge pillow to sleep on when you get home.  Something firm that you can be propped up on.  
    6. I put an arm chair next to my bed.  It incentivized me to stay out of bed when I wasn’t napping but gave me a place to rest.  I did that for a week before I ventured on to the couch.  I needed to prop myself up when sitting on the couch.    
    7. Coughing and sneezing will hurt for a while.  I held a small pillow under my right arm  when I coughed or sneezed I would squeeze it.  I also found that carrying it would keep my arm from resting in my side incisions.  
    8. Don’t let the pain get ahead of you. I tried to be a hero while in the hospital and waited for my pain meds until I was in pain.  It was a mistake and getting the pain back under control required stronger meds.  The nurses were not happy.  Stick with the regiment they give you and let them know if it is wearing off.  
    9. The pain meds can cause constipation.  Drink lots of water and keep walking.  I as able to transition to just taking pain meds at night after a week and to Motrin after 10 days.
    10. I’ve mentioned the physical side.  I also need emotional support.  I was pretty sure I had cancer going in.  When I woke up and the doctor told me I did I was joking with him and my family about it.  The pain meds were doing their job.   I woke up later that night in a panic.  I knew I had cancer but didn’t have any of the details, I didn’t bother to ask or didn’t remember.  That made for a long night.  The emotions of it came in waves at first.   I wouldn’t think about it at all and then boom, it was like a weight was dropped on my head.  That gets better with time   This board helps.  I’m also looking for a local support group   
    I’m coming up on three months post op.  I’m coaching all three of my kids baseball teams, we had six games last weekend.  I run, throw and catch without issue.  I have a little lump/tickle in my throat that causes me to cough sometimes.  There is a little (I really don’t notice it unless I touch it) numbness on the side where my incisions were, when I cough it doesn’t hurt but my chest feels empty where they removed the lobe.  I’m told all of those things will go away with time.  None of it affects my daily life.   
    I was really worried going in.  It really was not as bad as I thought it would be   Hang in there.  You’ll get through it too.  You’ll have plenty of support here   
     
     
  8. Like
    Curt reacted to Charles in Durvalumab   
    Tomm,
    Thank you for your encouragement and if I may I would like to convey here what my Onc has told me today right before I got #7
    He told me that he just got back from a big Oncologists pow wow and has a friend/colleague on the Pacific Coast trials teamand  that he was able to discuss a few "things" with, concerning Durvalumab, and actually Durvalumab was the subject of the convention talks. Now, The Pacific coast trials is the testing they done to gain FDA approval in Feb. of 2018 for Imfinzi, and it is still ongoing. The reason it is still ongoing is because patients are benifitting far greater and longer than stage one and two of the testing had originally suggested. Side effects are still prevalent but managing them while staying on the Durva for the whole year is KEY. The way the drug is working in my case has been that the Durva seems to "choose" one side effect at a time to really clamp down on while doing it's job on the dIseased tissue it is targeting, sort of a "side dish" if you will. The first side dish it chose was not exceptable for me because it caused a lot of pain so we backed off and took Prednisone for a week and that side dish went away and hasn't returned, thank God and knock on wood too.. Then we got back on the regimen quickly and the antibodies have chosen another "side dish" to enjoy while it has it's main meal of the tumor. For me that is the post fight Rocky Balboa look that includes a little swelling in the facial region, stuffy head and yes weight gain all the while still having staggering fatigue. I had been going through this for a month and a half and needed relief so we started Prednisone again for 4 days to see if it would help and it did. Then again back on the treaments a week later. So my theory was, since I can live with this particular side effect as long as there is no pain, no apparent permanent damage, and I can get relief at some point in time, then quickly get right back on the Durva, COOL WITH ME!   THEN my Onc said that his friend ( The one on the Pacific coast trial team) told him that he was actually prescribing Prednisone in lower dosages 5, 10 mg once a day for longer periods of time to deal with the side effects that were more "tolerable and not serious" in an ongoing manner ,and this seems to actually confirm my theory and provides a way to keep the durva "side dishing" on this particular side effect as opposed to a different , new found, and more serious one while doing it's thang on the tumor. So now I am on 10 mg. prednisone once daily until further notice all the while staying on the treatments. Whats more is there is evidence that the Prednisone does not stop the effectiveness of the Durvalumab in my case and others. so we will  see. Just stay on the Durva for the whole year that seemed to be the most important thing my Onc told me and manage the tolerable side effects with your Onc. When my Onc sent me to the infusion room after our discussion, he sat down in the treatment room and started typing profusely about our plan and discussion and I felt like a TRUE PIONEER because what we came up with just may also help someone else and he was typing like he thought so too, how cool is that? This gives me hope beyond description, WHAT A RUSH!......... Charles out...
  9. Like
    Curt reacted to Tom Galli in Neuropathy due to cancer treatments   
    JSEIB,
    Welcome.
    Unfortunately, I also suffer chronic foot pains.  In my case, the cause is the drug Taxol and I had 18 infusions of the stuff. Doctors call my symptom a peripheral neuropathy but most lung cancer survivors call it “Taxol Toes”.  My foot pain is chronic at about a level 4 out of 10.  My toes burn, the joints in my toes hurt, and the edge of my heal hurts.  I’ve tried Gabapentin and Lyrica and these didn’t help at all. The anesthesiologists (pain management physician) I consult with told me injected nerve blocks will work, but the medication doesn’t last too long and the body gets accustomed to the medication. Moreover, there is a mandatory minimum period between injections.  I was told that the block works but after feeling no pain, resumption of pain as the medication wears off is very hard to deal with. So I’ve avoided pain blocks.  Here is what I do to deal with my pain.
    Protect the Toes
    Buy 1/2 to 1 size larger shoe than your normal foot size and buy a wide size. I use Samual Hubbard shoes.  They are expensive but worth it. Wear thick woolen socks. Wool is the best cushioning material there is. If you can’t tolerate 100% wool, then buy a wool blend but ensure the wool content is higher than 50%. Buy leather moccasins generously lined with wool. Buy them without a sole and wear them to bed to keep the covers from pressing down on your toes. These are bed shoes only and buy them oversized like your shoes. Treat the Pain
    My pain resolution strategy is to tolerate the pain through the day and address it at night so I can sleep. Get a script for Lidocaine Ointment USR, 5% and apply it liberally to your toes and other painful areas of your feet. This will only last about 30 minutes but sometimes that is enough to allow me to sleep. Buy flexible freeze packs with gel ace bandage these to your feet. I use this technique when my chronic pain level increases. It is uncomfortable for the first 10 minutes but then the cold produces a numbing effect that eliminates my pain. Fifteen to 20 minutes of icing produces numbness for about 30 minutes, again just enough for me to sleep, sometimes. Only get in bed when tired. Try and keep a regular sleep schedule. Minimize stress and anxiety because these spike my chronic pain. My doc prescribed Xanax and I take 0.5mg at bedtime if I’ve had a stressful day. But, one can grow dependent on Xanax so only use as needed. Sometimes I have bouts of muscle cramps that spike my chest chronic pain from 3 thoracic surgeries. When this occurs, my Taxol Toes feel much worse. Then I need narcotic medication. I have a script for Tramadol that I use about three times a month. I’m very reluctant to use it because of a fear of dependence and the undesirable side effect of constipation. No non prescription medication address my pain because it’s cause is damaged nerves. Even narcotic medication does not reduce the pain; it just makes it easier to tolerate. Standing and Walking
    Despite orthotic-like shoes, standing and walking long distance spikes my chronic foot pain.  So, try and avoid these activities but sometimes distance walking is necessary (like when on a touring vacation). I find I can walk about a mile without spiking my pain and if I rest, I can walk further.  Try and find your own limits. One thing that was hard for me was finding the patience to learn pain tolerance. If I give in to trying treatment during the day, I won’t be able to enjoy daytime activities. So, I’ve learned tolerance.  
    I hope these ideas help you.
    Stay the course.
    Tom
  10. Like
    Curt got a reaction from Tom Galli in Prayers Answered   
    Surgery and recovery is different for everyone.  Are you having VATS surgery?  That recovery is easier.  I am 43, reasonably good health and had  VATS.  I had surgery on Tuesday night and went home on Friday.  I was supposed to go home one Thursday but had an air pocket in my chest they wanted to watch.  I was up and walking the morning after surgery.  They encourage you to get up and move.  The more you can the quicker you can have the drainage tube removed and the quicker you go home.  I stayed home for two weeks.  My first time out was to get a hair cut.  I returned to work for a few hours here and there after three weeks.  I returned in full after four weeks.  Six weeks out I was back to normal activity.  A few suggestions and notes.  
    1. It is not as bad as you are imagining.  I envisioned myself walking around frail and on oxygen.  There was no oxygen.  I was shocked how little my breathing changed.  Capacity was different but the act of breathing wasn’t.   I have three young boys that are 6, 8 and 10.  I beat them and their friends in dodge ball three weeks after surgery.  It was me against the block. 
    2. Walk and use the spirometer before surgery to build lung capacity.  Keep doing it after.  
    3. Hospitals are loud.  I found headphones really necessary to get any rest.  You will want rest. 
    4. I was tired.  More tired than I’ve ever been.  Did I mention I have three young boys?   In the weeks after surgery I would wake up, have breakfast, walk and take a nap.  I’d wake up, have lunch, walk, take a shower than nap.  Wake up, eat dinner, walk and go back to sleep.  The extreme tired lasted for about four weeks.  
    5. You’ll want a wedge pillow to sleep on when you get home.  Something firm that you can be propped up on.  
    6. I put an arm chair next to my bed.  It incentivized me to stay out of bed when I wasn’t napping but gave me a place to rest.  I did that for a week before I ventured on to the couch.  I needed to prop myself up when sitting on the couch.    
    7. Coughing and sneezing will hurt for a while.  I held a small pillow under my right arm  when I coughed or sneezed I would squeeze it.  I also found that carrying it would keep my arm from resting in my side incisions.  
    8. Don’t let the pain get ahead of you. I tried to be a hero while in the hospital and waited for my pain meds until I was in pain.  It was a mistake and getting the pain back under control required stronger meds.  The nurses were not happy.  Stick with the regiment they give you and let them know if it is wearing off.  
    9. The pain meds can cause constipation.  Drink lots of water and keep walking.  I as able to transition to just taking pain meds at night after a week and to Motrin after 10 days.
    10. I’ve mentioned the physical side.  I also need emotional support.  I was pretty sure I had cancer going in.  When I woke up and the doctor told me I did I was joking with him and my family about it.  The pain meds were doing their job.   I woke up later that night in a panic.  I knew I had cancer but didn’t have any of the details, I didn’t bother to ask or didn’t remember.  That made for a long night.  The emotions of it came in waves at first.   I wouldn’t think about it at all and then boom, it was like a weight was dropped on my head.  That gets better with time   This board helps.  I’m also looking for a local support group   
    I’m coming up on three months post op.  I’m coaching all three of my kids baseball teams, we had six games last weekend.  I run, throw and catch without issue.  I have a little lump/tickle in my throat that causes me to cough sometimes.  There is a little (I really don’t notice it unless I touch it) numbness on the side where my incisions were, when I cough it doesn’t hurt but my chest feels empty where they removed the lobe.  I’m told all of those things will go away with time.  None of it affects my daily life.   
    I was really worried going in.  It really was not as bad as I thought it would be   Hang in there.  You’ll get through it too.  You’ll have plenty of support here   
     
     
  11. Like
    Curt reacted to Road bum in 15,000th post and counting !!!   
    Katie, I want to thank you for beginning this forum. It has been a lifesaver for me.
    Every other forum I found, when I was diagnosed, was so negative that I almost stopped looking for one. 
    All the folks on here are so positive about things that I finally started looking at the whole situation a lot differently.
    My thanks to you and the other good folks on this forum. 
    Ron
  12. Like
    Curt reacted to Isabelle49 in Introduction - Isabelle49   
    Looking forward to meeting with the new doc and get everything straightened out. Thanks.
  13. Like
    Curt reacted to Rower Michelle in Scared of upcoming lung surgery, especially aftermath   
    Hey Irene-
    Wer’re hear for you when you’re able to update us.  Hope the procedure went well today.
    Michelle
  14. Like
    Curt reacted to Rower Michelle in Prayers Answered   
    Hi Brian-
    Its hard to believe in our little club the words tumor and good news can occur in the same sentence.  One step at a time, let’s do the happy dance for this milestone.  
    Keep us posted along the way!  Will keep the prayer warriors going! 
    Michelle
  15. Like
    Curt got a reaction from Tom Galli in Stage 1 Adenocarcinoma in Upper Right Lung   
    Banna.  I had an upper right lobe lobectomy a few months ago.  I am also currently NED. My first two scans are every three months, then six months for a few then a year.  At five years they will decide what to do after that.  I completely understand the feeling of just waiting for it to come back.  I looked into doing follow treatments to reduce the likelihood of recurrence.  I was told it wasn’t necessary.  I was also told that if you don’t have any recurrence in the first five years the likelihood of recurrence decreases.  
  16. Like
    Curt got a reaction from Brian1969 in Prayers Answered   
    Surgery and recovery is different for everyone.  Are you having VATS surgery?  That recovery is easier.  I am 43, reasonably good health and had  VATS.  I had surgery on Tuesday night and went home on Friday.  I was supposed to go home one Thursday but had an air pocket in my chest they wanted to watch.  I was up and walking the morning after surgery.  They encourage you to get up and move.  The more you can the quicker you can have the drainage tube removed and the quicker you go home.  I stayed home for two weeks.  My first time out was to get a hair cut.  I returned to work for a few hours here and there after three weeks.  I returned in full after four weeks.  Six weeks out I was back to normal activity.  A few suggestions and notes.  
    1. It is not as bad as you are imagining.  I envisioned myself walking around frail and on oxygen.  There was no oxygen.  I was shocked how little my breathing changed.  Capacity was different but the act of breathing wasn’t.   I have three young boys that are 6, 8 and 10.  I beat them and their friends in dodge ball three weeks after surgery.  It was me against the block. 
    2. Walk and use the spirometer before surgery to build lung capacity.  Keep doing it after.  
    3. Hospitals are loud.  I found headphones really necessary to get any rest.  You will want rest. 
    4. I was tired.  More tired than I’ve ever been.  Did I mention I have three young boys?   In the weeks after surgery I would wake up, have breakfast, walk and take a nap.  I’d wake up, have lunch, walk, take a shower than nap.  Wake up, eat dinner, walk and go back to sleep.  The extreme tired lasted for about four weeks.  
    5. You’ll want a wedge pillow to sleep on when you get home.  Something firm that you can be propped up on.  
    6. I put an arm chair next to my bed.  It incentivized me to stay out of bed when I wasn’t napping but gave me a place to rest.  I did that for a week before I ventured on to the couch.  I needed to prop myself up when sitting on the couch.    
    7. Coughing and sneezing will hurt for a while.  I held a small pillow under my right arm  when I coughed or sneezed I would squeeze it.  I also found that carrying it would keep my arm from resting in my side incisions.  
    8. Don’t let the pain get ahead of you. I tried to be a hero while in the hospital and waited for my pain meds until I was in pain.  It was a mistake and getting the pain back under control required stronger meds.  The nurses were not happy.  Stick with the regiment they give you and let them know if it is wearing off.  
    9. The pain meds can cause constipation.  Drink lots of water and keep walking.  I as able to transition to just taking pain meds at night after a week and to Motrin after 10 days.
    10. I’ve mentioned the physical side.  I also need emotional support.  I was pretty sure I had cancer going in.  When I woke up and the doctor told me I did I was joking with him and my family about it.  The pain meds were doing their job.   I woke up later that night in a panic.  I knew I had cancer but didn’t have any of the details, I didn’t bother to ask or didn’t remember.  That made for a long night.  The emotions of it came in waves at first.   I wouldn’t think about it at all and then boom, it was like a weight was dropped on my head.  That gets better with time   This board helps.  I’m also looking for a local support group   
    I’m coming up on three months post op.  I’m coaching all three of my kids baseball teams, we had six games last weekend.  I run, throw and catch without issue.  I have a little lump/tickle in my throat that causes me to cough sometimes.  There is a little (I really don’t notice it unless I touch it) numbness on the side where my incisions were, when I cough it doesn’t hurt but my chest feels empty where they removed the lobe.  I’m told all of those things will go away with time.  None of it affects my daily life.   
    I was really worried going in.  It really was not as bad as I thought it would be   Hang in there.  You’ll get through it too.  You’ll have plenty of support here   
     
     
  17. Like
    Curt got a reaction from Rower Michelle in Prayers Answered   
    Surgery and recovery is different for everyone.  Are you having VATS surgery?  That recovery is easier.  I am 43, reasonably good health and had  VATS.  I had surgery on Tuesday night and went home on Friday.  I was supposed to go home one Thursday but had an air pocket in my chest they wanted to watch.  I was up and walking the morning after surgery.  They encourage you to get up and move.  The more you can the quicker you can have the drainage tube removed and the quicker you go home.  I stayed home for two weeks.  My first time out was to get a hair cut.  I returned to work for a few hours here and there after three weeks.  I returned in full after four weeks.  Six weeks out I was back to normal activity.  A few suggestions and notes.  
    1. It is not as bad as you are imagining.  I envisioned myself walking around frail and on oxygen.  There was no oxygen.  I was shocked how little my breathing changed.  Capacity was different but the act of breathing wasn’t.   I have three young boys that are 6, 8 and 10.  I beat them and their friends in dodge ball three weeks after surgery.  It was me against the block. 
    2. Walk and use the spirometer before surgery to build lung capacity.  Keep doing it after.  
    3. Hospitals are loud.  I found headphones really necessary to get any rest.  You will want rest. 
    4. I was tired.  More tired than I’ve ever been.  Did I mention I have three young boys?   In the weeks after surgery I would wake up, have breakfast, walk and take a nap.  I’d wake up, have lunch, walk, take a shower than nap.  Wake up, eat dinner, walk and go back to sleep.  The extreme tired lasted for about four weeks.  
    5. You’ll want a wedge pillow to sleep on when you get home.  Something firm that you can be propped up on.  
    6. I put an arm chair next to my bed.  It incentivized me to stay out of bed when I wasn’t napping but gave me a place to rest.  I did that for a week before I ventured on to the couch.  I needed to prop myself up when sitting on the couch.    
    7. Coughing and sneezing will hurt for a while.  I held a small pillow under my right arm  when I coughed or sneezed I would squeeze it.  I also found that carrying it would keep my arm from resting in my side incisions.  
    8. Don’t let the pain get ahead of you. I tried to be a hero while in the hospital and waited for my pain meds until I was in pain.  It was a mistake and getting the pain back under control required stronger meds.  The nurses were not happy.  Stick with the regiment they give you and let them know if it is wearing off.  
    9. The pain meds can cause constipation.  Drink lots of water and keep walking.  I as able to transition to just taking pain meds at night after a week and to Motrin after 10 days.
    10. I’ve mentioned the physical side.  I also need emotional support.  I was pretty sure I had cancer going in.  When I woke up and the doctor told me I did I was joking with him and my family about it.  The pain meds were doing their job.   I woke up later that night in a panic.  I knew I had cancer but didn’t have any of the details, I didn’t bother to ask or didn’t remember.  That made for a long night.  The emotions of it came in waves at first.   I wouldn’t think about it at all and then boom, it was like a weight was dropped on my head.  That gets better with time   This board helps.  I’m also looking for a local support group   
    I’m coming up on three months post op.  I’m coaching all three of my kids baseball teams, we had six games last weekend.  I run, throw and catch without issue.  I have a little lump/tickle in my throat that causes me to cough sometimes.  There is a little (I really don’t notice it unless I touch it) numbness on the side where my incisions were, when I cough it doesn’t hurt but my chest feels empty where they removed the lobe.  I’m told all of those things will go away with time.  None of it affects my daily life.   
    I was really worried going in.  It really was not as bad as I thought it would be   Hang in there.  You’ll get through it too.  You’ll have plenty of support here   
     
     
  18. Like
    Curt got a reaction from LouT in Prayers Answered   
    It’s a strange feeling to be relieved to get diagnosed but I know the feeling.  Living with knowing but not really knowing is stressful.  Having a clear path forward allows you to focus on that and worry less.  I had an upper right lobe lobectomy a few months ago.  If you have any questions or concerns fire away.  W
  19. Thanks
    Curt got a reaction from joiathome in Introduction - joiathome (jo) - my husband has stage iv nsclc adenocarcinoma   
    Hi Jo.  I’m sorry to hear about your husbands diagnosis.  My father had Stage IV lung cancer and I was recently diagnosed at Stage 1.  My dad liked fruit smoothies (we’d hide veggies and protein powder in them) while he was undergoing treatments.  Milk shakes also.  I hope his symptoms improve and you get some of of those bright days you are hoping for soon.  
  20. Like
    Curt reacted to LouT in Introduction - Isabelle49   
    Isabelle,
    I've been following this thread and am glad to hear that you have the appointment setup.  KatieB is absolutely correct that you never want the system to control your care or treatment.  I hope this Pulmonologist will be the right one for you.  For my part it was a pulmonologist that noticed my nodule on a CT Scan taken months before I saw him for something unrelated to cancer.  He was sharp and pushed everyone else in the "system" to get me treated and I'm so glad that I came across him.  I wish the same for you.

    Please keep us updated.  You'll be in our thoughts.
    Lou
  21. Like
    Curt reacted to Isabelle49 in Introduction - Isabelle49   
    Update: have an appointment with a new Pulmonologist on the 29th, so will go from there.
  22. Like
    Curt reacted to KatieB in Stage 1 Adenocarcinoma in Upper Right Lung   
    The uncertainty is definitely hard.  Being anxious is normal for sure. You can live in fear waiting for the shoe to drop (if it ever does), or you can run with this wonderful new start and LIVE life to the fullest.  Keep up with the scans.  Think of them like a colonoscopy or mammogram- something you just have to do.
    There are studies that show that once you've had any kind of cancer, your chance of developing a second cancer is still higher than the average person.  Eating clean and staying active is good for your overall health.  I would try to always stay away from carcinogens- those that you breathe/inhale and those that could get into your bloodstream through your skin. Being healthy also boosts your immune system.
    I'm so happy you found us.  We will be here for you!
     
  23. Like
    Curt reacted to Rower Michelle in 15,000th post and counting !!!   
    Wow Katie- YOU ROCK! 
  24. Like
    Curt reacted to Neverstopfighting in Trials Tak 788 for EGFR (BF has lung cancer stage 4)   
    Wow, 
    That last comment stopped this conversation right away.  I’m sorry for your loss LMS23. 
    The latest stats from my Onc at MSK is the median PFS for Tagrisso is 18.9 months. That is progression free survival and really the only number oncologists look at with medication.  Of course, side effects and complications occur with any drugs, especially one this powerful. I’m hopeful with the Tagrisso plus Vizimpro trial I am currently in.
    For me personally, I have hope that by the time my cancer cells start to resist my treatment, there will be another generation of EGFR mutation TKIs that will address the resistance.   
  25. Like
    Curt got a reaction from JenG in New to the Group   
    The Bonnie J Addario living room sessions are great.  I watch them live on YouTube.  Lots of info and hope.   
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