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Curt

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  1. Thanks
    Curt got a reaction from Jdf1217 in Recently diagnosed with Adenocarcinoma   
    Hello @Jdf1217  First off congratulations on the birth of your third child.  My wife and I have three boys; 11, 9 and 6.  Three is a game changer.  I am really sorry to hear about your diagnosis and what you are going through.  Finding out you have lung cancer, especially at a young age is very scary.  I was forty two when I was diagnosed last year.  I’m considered young, you are considered very young.  Ignore what you read online about prognosis.  Those numbers are for people who were diagnosed five years ago and for people of all ages and health.  They also don’t reflect all of the treatments that have become available in the last five years.  The fact that it is localized in one lung, that you are young and that you have so much to live for all  work in your favor. 
     
    Have they done a biopsy of the cancer yet?  Normally genetic testing on blood work is what is called germline genetic testing.  That testing determines if “you“ have any hereditary mutations that predispose you to lung cancer.  A biopsy of the cancer cells would allow them to do somatic genetic testing of the cancer itself to identify if “it” has any genetic mutations.  If there are any mutations your treatment can be tailored specially to them.  
     
    I know this is terrifying but it is confront able.  I’m glad you found this site. It’s been a great source of support for me.  I hope it also provides you with what you need during this time.  Hang in there.  
  2. Like
    Curt got a reaction from Rower Michelle in Recently diagnosed with Adenocarcinoma   
    Hello @Jdf1217  First off congratulations on the birth of your third child.  My wife and I have three boys; 11, 9 and 6.  Three is a game changer.  I am really sorry to hear about your diagnosis and what you are going through.  Finding out you have lung cancer, especially at a young age is very scary.  I was forty two when I was diagnosed last year.  I’m considered young, you are considered very young.  Ignore what you read online about prognosis.  Those numbers are for people who were diagnosed five years ago and for people of all ages and health.  They also don’t reflect all of the treatments that have become available in the last five years.  The fact that it is localized in one lung, that you are young and that you have so much to live for all  work in your favor. 
     
    Have they done a biopsy of the cancer yet?  Normally genetic testing on blood work is what is called germline genetic testing.  That testing determines if “you“ have any hereditary mutations that predispose you to lung cancer.  A biopsy of the cancer cells would allow them to do somatic genetic testing of the cancer itself to identify if “it” has any genetic mutations.  If there are any mutations your treatment can be tailored specially to them.  
     
    I know this is terrifying but it is confront able.  I’m glad you found this site. It’s been a great source of support for me.  I hope it also provides you with what you need during this time.  Hang in there.  
  3. Like
    Curt reacted to LisaA in What date do people use   
    Thank you all for your replies. I really just need something that is finally positive in my life since it has been a long, long year.    So I am using tomorrow, 11/24 as my date since that was the date of detection. 
    So a happy 1 year cancer survivor dinner and toast will occur tomorrow.  I wish good health and healing to all on this board. Thank you for being here for me whenever I have needed answers. I'm grateful that I am not alone. 🧡
  4. Like
    Curt got a reaction from Niess in What date do people use   
    @LisaA whichever damn date you want!   Congratulations on NED.  
  5. Like
    Curt reacted to Robert A. in Coughing fit.   
    Thanks all, chemo starts Monday so hopefully we can start down the road to wellness.
  6. Like
    Curt reacted to D iane in Small Cell Diagnosis   
    There has been no mention of genetic markers.  I asked the pulm. about receptors and if that's how they treat this cancer on Day 1 since I saw nothing of the sort on the pathology report from biopsy.  They just threw the stain on the samples and said Yep, small cell.    He asked what I did, like did I have a medical back round.  As with anyone diagnosed with any type of cancer, you want to know all there is to know about it.  You're always looking for an answer as to why your body's cells start going stupid!  You're always looking for a way to out smart it from coming back or controlling metastatic disease.
    At this time, I am just grateful they are treating him and still holding out hope that this treatment will work for a period of time.  I won't hit the floor until: 1-He either gets too sick from these treatments, or 2- He makes it thru but the scans show bad results.
    The Neulasta shot has kicked his butt.  He's very achy and sleepy.  He is taking Claritin, advil, Tylenol.  I've been keeping bottled water around.  It seems he will drink it since it's right in front of him whether in the living room or bedroom.  I even put one in his van should he venture out.  My daughter took a sick day today and is at home with him.   What a great help!  I trust she will get some nourishment into him today.
    We thought we would have a quiet week next week, but after Dr. visit yesterday , he was instructed to have labs done on Wed. and he is going to have a port put in.  Consult with surgeon is on Tues.  We are on schedule to have that done before next cycle.  
    Thank you.  🙂
  7. Like
    Curt got a reaction from Troy2 in Accidentally discovered 17 x 10 nodule   
    @Troy2 spiculated does increase the concern a bit but is still not definitive.  A negative PET is also not definitive that it is NOT cancer.  I had an 8mm spiculated nodule in my upper right lobe.  I watched it for a year with no changes and a negative PET.  The doctor felt I should take it out but gave me the option of continuing to watch it.  I have a pretty significant family history of lung cancer, the fact of where it was and that it was spiculated increased the concern.  The surgeon said right before I went under that he didn’t think it was anything and that it would only be a wedge resection.  I woke up a few hours later and found out I had NSCLC Adenocarcinoma.  They did a full upper right lobe lobecty while I was under.  The surgery and recovery was not nearly as bad as I imagined it would be.  I had visions of being debilitated and walking around on oxygen.  None of that was the case.  I’ve made a full recovery from the surgery in late February.  Some minor numbness and pulling when I cough.  Normal breathing and my lung capacity is back to where it was pre surgery.  
  8. Like
    Curt reacted to PaulaC in Weekend Wisdom: Scanxiety   
    Brain MRI clear! NED next scan 3 months.
  9. Like
    Curt reacted to Rower Michelle in Cardiac Results   
    Hey Lou!
    I was thinking about you & @Curt yesterday. My doubles partner & I went for a nice walk along the lake trails.  Beautiful weekend in KC.  Today I tested out a new personal trainer that specializes in cancer rehab.  Can’t say it was a lot of fun since it was sort of cross fit-lite.  I wasn’t a big fan of those type of work outs BC.  I will keep at it.  I want to be able to row more often next spring without feeling wiped out the next day.  I have every reason this inhibitor is going to continue to be effective so I am making 2020 plans!  All my cardiac labs & scans were normal.  I’m taking Lasix for the edema while trying hard to ignore the big number on the scale.  Next set of scans are due late January.  Then we’re off to Amelia Island.  Thanks for checking in on me.  I hope you are well!!! 
     
    Ro-
    I’ve been thinking about you as well with the news of Dr S moving into industry.  I’m so sorry about those scans, it must take nerves of steel waiting for the clinical trial to commence.  I pray they get underway soon.  Some of these Phase I trials are going well because there’s a greater understanding of the science. Doesn’t sound like they are throwing spaghetti on the wall. I really admire your strength.  Please keep us posted.  I think we all appreciate your willingness to go the trial route.  Not an easy road for sure.  We’re here for you!  
     
    Hugs to you guys!
    Michelle
     
     
  10. Like
    Curt got a reaction from Tom Galli in Waiting for Verdict ... and Not Understanding it All   
    Hello @Olive.  I’m sorry to hear about BOTH of your diagnosis.  I had an upper right lobe lobectomy back in February.  They can usually tell pretty quickly what type, NSCLC OR SCLC, pretty quickly.  Some of the genetic testing does take a bit longer.  Be sure to have that testing done if it wasn’t.  The chest pains could be from the nerve damage from the surgery.  The surgery is pretty traumatic to your body.   Stomach pains could be the same or from constipation from the pain medication.  The nervous system works in funny ways and sometimes displaces pain to other areas.  I was still in pain five days out.  Talk to your doctor about adjusting your pain medication.  
     
    “Then what“ depends on the report.  If you had clear margins and no lymph node involvement they will probably just monitor you and go after the breast cancer.   Given your other cancer they may also opt for follow up chemo just to make sure there are no lingering cancer cells.  
     
    It will hurt to cough for 2-3 weeks.  Is your chest tube still in?   Once the incision on your side heals up the pain will go away.  I squeezed a pillow on my side when I coughed or sneezed, it helped.  I started to breath better pretty quickly.  I’d say a month.   I was relentless with walking and using the spirometer.  If you do both it will improve quickly.  I’m back to my previously lung capacity.   
     
    It’s a tough surgery but I’m amazed at how well I’ve recovered.  I had visions of being debilitated, walking around on oxygen the rest of my life.  I do have some residual numbness and soreness on my side but generally I feel great and have fully recovered.   I’m sure you will as well.  Hang in there.  
     

     
     
  11. Like
    Curt got a reaction from Going crazy waiting in 8mm nodul with spiculated   
    Hello @Going crazy waiting   The wait between finding out there is something on your lung and actually finding out what it is is very stressful.  I watched one for almost a year and opted to have surgery without knowing for sure.  I didn’t find out I had cancer until I woke up from the surgery.  I hope there are more definitive diagnostic tools for lung cancer soon.  
     
    Keep in mind that the majority of nodules are NOT cancer.  The fact that there are two, the one is spiculated and you have a family history increases the concern a bit, though None are a definitive driving factor.  Keep watching them and try and live life without thinking about it between those scans.  
  12. Like
    Curt got a reaction from LisaA in What date do people use   
    @LisaA whichever damn date you want!   Congratulations on NED.  
  13. Like
    Curt got a reaction from Tom Galli in Small Cell Diagnosis   
    @D iane the journal is a great idea!  Sounds like you are being a great support for your husband.  Please be sure that you are also caring for yourself during this time.  It’s very easy to forget that.  Cancer treatment is a marathon and you’ll need to be healthy to be able to continue to be a support to him.  It is very easy to get swept up in the patient/caregiver roles right now.  Make some time to put that aside and be husband/wife.  Both will be important to help you both through this.  I hope he gets good PET scan results today.  
  14. Like
    Curt reacted to LUNGevityKristin in LUNGevity advocate featured on the Today Show!   
    Thanks to two surgeries and targeted therapy for her specific kind of lung cancer, Jill Feldman is living with the disease more than a decade after being diagnosed — proof that advances in treatment have changed everything. Watch the feature here: https://www.today.com/health/what-are-signs-lung-cancer-nonsmoker-diagnosed-disease-fights-stigma-t167097?fbclid=IwAR23rvhoc2MII_qp8iPEHeK7gyvWVR1DjvAuxraiXw3F1UZ7l7ZRU56ZpOU
  15. Like
    Curt got a reaction from MarieE in Another newbie ... Still a bit in shock   
    You’ll get back to travel soon enough.  It’s better to get the treatments out of the way now.  There are some on this site who plan trips before each CT Scan to avoid the anxiety that inevitably builds at that time.   
  16. Like
    Curt got a reaction from BridgetO in 8mm nodul with spiculated   
    Hello @Going crazy waiting   The wait between finding out there is something on your lung and actually finding out what it is is very stressful.  I watched one for almost a year and opted to have surgery without knowing for sure.  I didn’t find out I had cancer until I woke up from the surgery.  I hope there are more definitive diagnostic tools for lung cancer soon.  
     
    Keep in mind that the majority of nodules are NOT cancer.  The fact that there are two, the one is spiculated and you have a family history increases the concern a bit, though None are a definitive driving factor.  Keep watching them and try and live life without thinking about it between those scans.  
  17. Like
    Curt got a reaction from BridgetO in Why is Mom being difficult?   
    No worries about the “tantrum” @Fletch.  It is completely understood given what you are going through.  Watching someone you love go through this is excruciating.  It is a roller coaster of emotions.  I hope the doctors find a better solution for your mom.  Hang in there.  
  18. Like
    Curt got a reaction from BridgetO in Why is Mom being difficult?   
    Hi @Fletch   I’m sorry to hear about your moms diagnosis.  Cancer is a really tough disease.  Being scarred shitless is completely normal.  The word cancer will illicit fear universally.  I’ve dealt with it as a care giver to my father and now a patient myself.  Your mom is surely going through a lot of emotions right now.  A cancer diagnosis is a roller coaster.  Cancer treatment can be absolutely brutal.  My father was diagnosed at stage IV seven years ago and opted for the standard treatment regime available at the time.  Based on the statistics at the time I was torn between him getting the treatment or just living his best life with the time left.  He wanted treatment and I supported that.  He lived ten months after diagnosis and those were ten very difficult months for him.  Cancer treatments have progressed significantly since then and prognosis have improved, but the fight is still a difficult one to endure.  People are usually more willing to fight when they feel like they have something to fight for.  A milestone in their life or a loved one that they don’t want to miss is often a strong motivator.  My advice is get the real skinny from the doctors.  Are the treatments she is under curative or palliative?   If they are curative what are the odds?  If they are palliative what does it look like if she doesn’t take them? Doctors are trained to follow very specific courses of actions based on stage and prognosis.  They sometimes don’t consider quality of life as strongly as they should.  Your mom may not be in a place where she can easily absorb all of that.  Once you have the info talk through it with her so she can make an informed decision.  Also tell your mom that you love her, tell her that you don’t want her to die and want her to fight.  Then tell her that it is her decision and you will support whatever she decides.  That last part is really important.  You need to let her know how you feel and also let her know that it is her decision and you will support it.  Making the decision not to fight and enjoy your quality of life with the time you have left is often viewed as selfish...it is also often viewed as brave.  As long as the decision is well informed, deciding to fight or not to fight are two incredibly brave decisions.  
     
    I also recommend finding a local caregivers support group.  This will be an unbelievably  stressful time for you and your family.  Having a support system will help tremendously.  This group will surely stand in where we can.  You’ll find support from both patients and caregivers here, but having someone or a group to talk to in person will also help.  
     
    Hang in there.     
  19. Like
    Curt got a reaction from Fletch in Why is Mom being difficult?   
    No worries about the “tantrum” @Fletch.  It is completely understood given what you are going through.  Watching someone you love go through this is excruciating.  It is a roller coaster of emotions.  I hope the doctors find a better solution for your mom.  Hang in there.  
  20. 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.
  21. Like
    Curt got a reaction from Fletch in Why is Mom being difficult?   
    Hi @Fletch   I’m sorry to hear about your moms diagnosis.  Cancer is a really tough disease.  Being scarred shitless is completely normal.  The word cancer will illicit fear universally.  I’ve dealt with it as a care giver to my father and now a patient myself.  Your mom is surely going through a lot of emotions right now.  A cancer diagnosis is a roller coaster.  Cancer treatment can be absolutely brutal.  My father was diagnosed at stage IV seven years ago and opted for the standard treatment regime available at the time.  Based on the statistics at the time I was torn between him getting the treatment or just living his best life with the time left.  He wanted treatment and I supported that.  He lived ten months after diagnosis and those were ten very difficult months for him.  Cancer treatments have progressed significantly since then and prognosis have improved, but the fight is still a difficult one to endure.  People are usually more willing to fight when they feel like they have something to fight for.  A milestone in their life or a loved one that they don’t want to miss is often a strong motivator.  My advice is get the real skinny from the doctors.  Are the treatments she is under curative or palliative?   If they are curative what are the odds?  If they are palliative what does it look like if she doesn’t take them? Doctors are trained to follow very specific courses of actions based on stage and prognosis.  They sometimes don’t consider quality of life as strongly as they should.  Your mom may not be in a place where she can easily absorb all of that.  Once you have the info talk through it with her so she can make an informed decision.  Also tell your mom that you love her, tell her that you don’t want her to die and want her to fight.  Then tell her that it is her decision and you will support whatever she decides.  That last part is really important.  You need to let her know how you feel and also let her know that it is her decision and you will support it.  Making the decision not to fight and enjoy your quality of life with the time you have left is often viewed as selfish...it is also often viewed as brave.  As long as the decision is well informed, deciding to fight or not to fight are two incredibly brave decisions.  
     
    I also recommend finding a local caregivers support group.  This will be an unbelievably  stressful time for you and your family.  Having a support system will help tremendously.  This group will surely stand in where we can.  You’ll find support from both patients and caregivers here, but having someone or a group to talk to in person will also help.  
     
    Hang in there.     
  22. Like
    Curt got a reaction from Tom Galli in Why is Mom being difficult?   
    No worries about the “tantrum” @Fletch.  It is completely understood given what you are going through.  Watching someone you love go through this is excruciating.  It is a roller coaster of emotions.  I hope the doctors find a better solution for your mom.  Hang in there.  
  23. Like
    Curt got a reaction from DFK in Durvalumab   
    I got the flu shot.  I was warned I may feel some mild symptoms shortly after.  
  24. Like
    Curt got a reaction from DFK in Durvalumab   
    First I’d like to say that this topic and everyone on it is inspiring.  850+ posts and still going.  You are all amazing!
     
    I read this article in the Times today.  Seems relevant to @Rower Michelle post.https://www.nytimes.com/2019/10/24/well/eat/fiber-and-yogurt-tied-to-lower-lung-cancer-risk.html
    I dug a little deeper and found this article as well.  https://www.medpagetoday.com/hematologyoncology/lungcancer/82933

    I was briefly in to making my own Kefir.  I may get back into it.  It’s an amazing source of natural probiotics.  
  25. Like
    Curt got a reaction from Tom Galli in Spiculated nodule   
    Three to four years with no change is a reasonable indication of those spots being benign.  Adenocarcinoma in-situ cells are, for lack of a better word, pre-cancer cells that can turn into cancer.  You will likely only need to remove those cells and not the entire lobe.  They call that a wedge resection.  It is the same VATS surgery but with less lung removed.  
     
    Nerves and anxiety are normal given your situation. Try finding a local support group.  They may help.  If the nerves are getting in the way of your living a normal life then speak to your doctor about it.  They may be able to prescribe something.
     
     
     
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