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Curt

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  1. Like
    Curt got a reaction from Tom Galli in What's next after surgery?   
    Tnis site has some really good resource.
     Lung Cancer 101.  https://lungevity.org/for-patients-caregivers/lung-cancer-101
    Asking the Right Question  https://lungevity.org/for-patients-caregivers/asking-right-questions
    The Go2Foundation also  has good resources https://go2foundation.org/?gclid=Cj0KCQjwi7DtBRCLARIsAGCJWBo0viG0f9E7fKYGMO7jUjqSHTSzS0A8JcuJyukPTcr3q4IOb65optoaAgCsEALw_wcB
    One of the most informative things I’ve found is the Bonnie Addario (now Go2Fpundation) living rooms   You can watch them on YouTube.  https://www.youtube.com/user/BonnieJAddario
     
    You will be able to be more specific with your research once you get the genetic testing back.  Ask the doctor is they are doing both the somatic genetic testing (the cancer) and germline genetic testing (your husbands specific dna).  The somatic testing will provide information on targeted therapies.  The germline is good information to have to see if he has any inherited genetic mutations.  
  2. Like
    Curt got a reaction from MarieE in Another newbie ... Still a bit in shock   
    I’m so glad the surgery went well.  The first week is rough but went by quick for me, probably not for my family.  Getting the chest tube out will provide some relief.  That usually happens within a few days.  Don’t be concerned if it takes a little longer.  It all depends on how well the fluid drains.  Walking helps with that.  The pain meds do cause constipation which could lead to abdominal pain.  He’ll likely be given a stool softener.  As Lou said it’s recommended to keep on a consistent pain medication regiment in the beginning.  Too many of us have tried to be the tough guys/girls only to find out we aren’t that tough.  The only person being tough when I did it was the nurse reprimanding me for waiting too long to tell her I was in pain.  She wasn’t happy and let me know it.  I didn’t do it again.  
     
    It felt to me like I improved a lot in the first two weeks, hit a bit of a wall in terms of little improvement in the third week and was back to doing presurgery activities after four weeks.   To add to the recommendations from Lou and Bridget.  I walked around with a small firm pillow under my arm.  Something like a small, firm, decorative couch pillow.  It helped to keep my arm so it wasn’t laying against my incisions while I walked around, I hugged it when I slept and squeezed it when I coughed or sneezed.  Walk as much as he can, eat as best he can, cough (it’s very good for lung recovery), use the spirometer and get lots of sleep.  Don’t be surprised if he is VERY tired for a week or so.  Don’t be surprised if you are as well.  I’ve never been tired like that before, my wife said the same caring for me, and we had three sons in four years.  😳 
    Hang in there.  It gets better.  
  3. Like
    Curt got a reaction from MarieE in Another newbie ... Still a bit in shock   
    @MarieE you and your husband are in my prayers.  
  4. Like
    Curt got a reaction from MarieE in Another newbie ... Still a bit in shock   
    Very common for that to happen with this procedure.  There is no place like home!   
  5. Like
    Curt reacted to Isabelle49 in Negative changes.   
    Much appreciated. I’m home Saturday. Night. Hemoglobin was low, so was transfused with one unit of blood.  Had to twist a resident’s finger to get him to put in an order for the blood. My daughter who is also an RN was on him like white on rice when he indicated he didn’t think it was a good idea, said something about blood leaking into my lungs (Whaaat???  - never heard of that unless it was a trauma. Got the blood feeling like ihave more endurance (Duh, of course). Resident really got on my last nerve,but that’s how they learn.   Blessings to all.
  6. Like
    Curt got a reaction from Susan Cornett in The results are in...   
    Amazing @Susan Cornett!
  7. Sad
    Curt reacted to Isabelle49 in Negative changes.   
    I was admitted to the hospital this past Monday and diagnosed with pneumonia. I had developed severe SOB and fever. A CAT scan was done and it showed that  while chemo was on hold for the past 4 weeks (I had neutropenia  just before the last chemo 4 weeks ago) the enlarged lymph nodes and mass in my chest had bloomed ( became greatly enlarged) I have chosen to move to hospice, as I have been told that the chemo and radiation would only worsen my condition at this point). I wish you all the best and will keep in contact as long as Ican. Oh discharging to home Saturday 10/19. Blessings to all.
  8. Like
    Curt got a reaction from BridgetO in Another newbie ... Still a bit in shock   
    I’m so glad the surgery went well.  The first week is rough but went by quick for me, probably not for my family.  Getting the chest tube out will provide some relief.  That usually happens within a few days.  Don’t be concerned if it takes a little longer.  It all depends on how well the fluid drains.  Walking helps with that.  The pain meds do cause constipation which could lead to abdominal pain.  He’ll likely be given a stool softener.  As Lou said it’s recommended to keep on a consistent pain medication regiment in the beginning.  Too many of us have tried to be the tough guys/girls only to find out we aren’t that tough.  The only person being tough when I did it was the nurse reprimanding me for waiting too long to tell her I was in pain.  She wasn’t happy and let me know it.  I didn’t do it again.  
     
    It felt to me like I improved a lot in the first two weeks, hit a bit of a wall in terms of little improvement in the third week and was back to doing presurgery activities after four weeks.   To add to the recommendations from Lou and Bridget.  I walked around with a small firm pillow under my arm.  Something like a small, firm, decorative couch pillow.  It helped to keep my arm so it wasn’t laying against my incisions while I walked around, I hugged it when I slept and squeezed it when I coughed or sneezed.  Walk as much as he can, eat as best he can, cough (it’s very good for lung recovery), use the spirometer and get lots of sleep.  Don’t be surprised if he is VERY tired for a week or so.  Don’t be surprised if you are as well.  I’ve never been tired like that before, my wife said the same caring for me, and we had three sons in four years.  😳 
    Hang in there.  It gets better.  
  9. Like
    Curt reacted to drg6976 in Not really sure if I should be here or not   
    I am in a state of near shock. My doctor hasn't called yet, and not wanting to go the entire weekend with this hanging over my head, I called his office. The nice woman I spoke with informed me that the 'Full Report" (Whatever that means.) is not finished yet, and that is why the doctor has not called me. However the SURGICAL PATHOLOGY, was back.
    NONGYNECOLOGICAL CYTOPATHOLOGY CONSULTATION
    -- Diagnosis --
    BRONCHIAL BRUSHING RLL SUPERIOR SEGMENT:

    NEGATIVE FOR MALIGNANCY.

    BRONCHIAL WASHINGS RLL SUPERIOR SEGMENT WASHING:

    NEGATIVE FOR MALIGNANCY.
    I was able to access the report myself online, and I still can't quite believe it. Is there such a thing as a false negative?  I only ask because after the bronchoscopy he (The doctor) said it certainly looked malignant to him, and discussed various treatment options with my wife. I guess I can breathe a little easier now, but to be perfectly frank, I do not feel much better about it. Something akin to survivors guilt? I don't know. Anyway, my prayers and best wishes goes out to the members of the club that nobody wants to join.  Yet has some of the finest people in the world as members.
  10. Like
    Curt reacted to LUNGevityKristin in The results are in...   
    That stands for No Evidence of Disease.  It is the best news!  
  11. Like
    Curt reacted to Susan Cornett in The results are in...   
    I had my quarterly scan on Monday and met with Super Doc today. I am NED!! As soon as he gave me the results, I choked up. This means I've been NED for 12 months. I told him that, if I could, I would cartwheel down the hallway on my way out. He said he'd prefer just a simple WOO HOO.
    I'm going to go exhale for a bit - it's been a long week (3 sticks for lab work, 3 sticks for IV contrast). 
    Hang tough, friends.
  12. Like
    Curt got a reaction from Michele in Sleep   
    @Michele I’ve been on both sides of this disease.  A caregiver for my father and a patient myself.  Being a caregiver is very difficult.  I’d argue almost as difficult as fighting the disease yourself from an emotional perspective.  That emotional stress causes physical stress.  Some suggestions.  Find someone to talk to.  A support group, therapist, psychiatrist.  Whatever you can find close by.  Find support for the caregiving part.   Family, friends or a home health care aide that can provide you with some time to do the mundane life chores that probably don’t feel important right now.  Reach out here like you did last night.  We get it  On a plane they tell you to put the oxygen on yourself before your kids because you won’t be able to care for anyone else if you’ve already passed out.  It’s the same in this situation.  Caring for yourself is caring for your husband.  I’m so sorry you are going through this.  Hang in there.   
  13. Like
    Curt reacted to BarbLu in Hi I’m new   
    Curt, thanks very much for responding because I really needed to hear from someone that went through this. Since I look the same, some people can’t believe that I still have pain and am not fully recovered. I almost feel embarrassed or weird based on these reactions. I want to be 100% better but I’m still not there and I was getting concerned that it’s taking a longer time than I expected. It’s good to hear from others that it can take several months. Glad I found this forum! 😀
  14. Like
    Curt got a reaction from Tom Galli in Not really sure if I should be here or not   
    I know all of this is scary.  I’m really sorry you are going through it.  The words wedge resection and lobectomy sent me into a panic when I first heard them.  Please know that it is not as bad as you are likely thinking it is.  It wasn’t nearly as bad as I though it would be.  The surgery isn’t fun and the recovery takes a little while but you can make a complete recovery from either procedure.  In terms of treatment it is the best case scenario.  If you have any specific questions about either procedure, what to expect during and after please ask.  There are plenty of us here who can help you through it.  
  15. Like
    Curt got a reaction from Tom Galli in Another newbie ... Still a bit in shock   
    I’m so glad the surgery went well.  The first week is rough but went by quick for me, probably not for my family.  Getting the chest tube out will provide some relief.  That usually happens within a few days.  Don’t be concerned if it takes a little longer.  It all depends on how well the fluid drains.  Walking helps with that.  The pain meds do cause constipation which could lead to abdominal pain.  He’ll likely be given a stool softener.  As Lou said it’s recommended to keep on a consistent pain medication regiment in the beginning.  Too many of us have tried to be the tough guys/girls only to find out we aren’t that tough.  The only person being tough when I did it was the nurse reprimanding me for waiting too long to tell her I was in pain.  She wasn’t happy and let me know it.  I didn’t do it again.  
     
    It felt to me like I improved a lot in the first two weeks, hit a bit of a wall in terms of little improvement in the third week and was back to doing presurgery activities after four weeks.   To add to the recommendations from Lou and Bridget.  I walked around with a small firm pillow under my arm.  Something like a small, firm, decorative couch pillow.  It helped to keep my arm so it wasn’t laying against my incisions while I walked around, I hugged it when I slept and squeezed it when I coughed or sneezed.  Walk as much as he can, eat as best he can, cough (it’s very good for lung recovery), use the spirometer and get lots of sleep.  Don’t be surprised if he is VERY tired for a week or so.  Don’t be surprised if you are as well.  I’ve never been tired like that before, my wife said the same caring for me, and we had three sons in four years.  😳 
    Hang in there.  It gets better.  
  16. Like
    Curt got a reaction from LouT in Hi I’m new   
    Hi @BarbLu.  I had a full upper right lobe lobectomy on February 28.  Much the same as you.  Found by accident.  Stage 1A.  No follow up treatment after surgery.  It took me about three months to get back to full lung function.  I still have some numbness and some discomfort around the incision area.  It does get better.  If you aren’t using it do the spirometer often, walk and exercise as much as possible.  You will improve.  
  17. Like
    Curt got a reaction from LouT in Not really sure if I should be here or not   
    I know all of this is scary.  I’m really sorry you are going through it.  The words wedge resection and lobectomy sent me into a panic when I first heard them.  Please know that it is not as bad as you are likely thinking it is.  It wasn’t nearly as bad as I though it would be.  The surgery isn’t fun and the recovery takes a little while but you can make a complete recovery from either procedure.  In terms of treatment it is the best case scenario.  If you have any specific questions about either procedure, what to expect during and after please ask.  There are plenty of us here who can help you through it.  
  18. Like
    Curt got a reaction from LouT in Another newbie ... Still a bit in shock   
    I’m so glad the surgery went well.  The first week is rough but went by quick for me, probably not for my family.  Getting the chest tube out will provide some relief.  That usually happens within a few days.  Don’t be concerned if it takes a little longer.  It all depends on how well the fluid drains.  Walking helps with that.  The pain meds do cause constipation which could lead to abdominal pain.  He’ll likely be given a stool softener.  As Lou said it’s recommended to keep on a consistent pain medication regiment in the beginning.  Too many of us have tried to be the tough guys/girls only to find out we aren’t that tough.  The only person being tough when I did it was the nurse reprimanding me for waiting too long to tell her I was in pain.  She wasn’t happy and let me know it.  I didn’t do it again.  
     
    It felt to me like I improved a lot in the first two weeks, hit a bit of a wall in terms of little improvement in the third week and was back to doing presurgery activities after four weeks.   To add to the recommendations from Lou and Bridget.  I walked around with a small firm pillow under my arm.  Something like a small, firm, decorative couch pillow.  It helped to keep my arm so it wasn’t laying against my incisions while I walked around, I hugged it when I slept and squeezed it when I coughed or sneezed.  Walk as much as he can, eat as best he can, cough (it’s very good for lung recovery), use the spirometer and get lots of sleep.  Don’t be surprised if he is VERY tired for a week or so.  Don’t be surprised if you are as well.  I’ve never been tired like that before, my wife said the same caring for me, and we had three sons in four years.  😳 
    Hang in there.  It gets better.  
  19. Like
    Curt reacted to BridgetO in Another newbie ... Still a bit in shock   
    I love good news!  I completely agrree with Lou's suggestion about a wedge pillow. It made my recovery at home much more comfortable. The chest tube is generally uncomfortable.  I was released the day after my VATS lobectomy with a chest tube in place (with an attached one way valve and a bag) because of an ongoing air leak. The tube was in for 10 days and I felt MUCH better once it came out. Best wishes to your husband for a speedy recovery.
  20. Like
    Curt reacted to LouT in Another newbie ... Still a bit in shock   
    Marie
    So glad to hear that the surgery went well. Yes that pesky chest tube is uncomfortable, but as your husband says, manageable.  Based on my experience he has a good chance of going home in a few days. Unless you have an adjustable bed i  recommend getting one of those wedge pillows. It makes resting much easier.  Also make sure your hubby takes pain meds as prescribed. I thought I could do with out them and learned a hard lesson.  He’ll also be given a spirometer to work out his lungs and keep them clear. Please make sure he uses it as instructed. It really helps with recovery. 
    Please update us and ask any questions you may have.
    Lou 
  21. Thanks
    Curt got a reaction from Michele in Loosing battle small cell   
    Hi @Michele.  I’m really sorry to hear your husband is struggling.  I’ve been on both sides of this disease, the caregiver and the patient.  Both are equally difficult in their own ways.  Caregiving is definitely not for sissies!   I hope that things improve for him.  Hang in there.  
  22. Like
    Curt got a reaction from BridgetO in New to group   
    Hi Cari and welcome.  The online statistics are really scary.  Keep in mind that a 5 year survival rate it based on people diagnosed five years ago.  The treatments for lung cancer have improved dramatically since then.  You dads age, overall health and the specific biomarker indicators of his cancer (if you don’t know them he should find out) all play a roll in survival.  Lung cancer is a tough disease but your dad’s was caught early and he was able to have surgery.  Two really good things when it comes to battling lung disease.  There is definitely   hope.  Hang in there.  
  23. Like
    Curt reacted to LUNGevityKristin in Another newbie ... Still a bit in shock   
    Thinking of you and your husband today, Marie!  Please keep us updated on his recovery.
  24. Like
    Curt reacted to LouT in Another newbie ... Still a bit in shock   
    My prayers and thoughts are with you and your husband today.
    Lou
  25. 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!
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