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Curt

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  1. Like
    Curt got a reaction from MBinOregon in Celebrating 1 year Pneumonectomy Anniversary   
    Best thing I’ve seen today.  Very positive, encouraging words.
  2. Like
    Curt reacted to MBinOregon in Celebrating 1 year Pneumonectomy Anniversary   
    One thing I've learned since the diagnosis is to celebrate every little (and big) happy things.
    So today I'm celebrating that 5/9/18 I went into the hospital with so much uncertainty and 2 lungs and 4-5 hours later, I was wheeled out with 1 lung.  Came home 2 days later and went back to yoga 6 weeks later and then back to running by October.  Every handstand, every push up, every burpee, well, every breath makes me feel grateful and "normal'.  Most of all, I'm grateful to go from not knowing what tomorrow will bring to dare to hope for the future.  I'm also grateful for all the support, advice and cheering I've gotten on this forum.
    Thank you, everyone.
  3. Like
    Curt got a reaction from Claudia in Pet Scan on May 21   
    Scanziety is one of the worst parts.  Try to find some distractions.  No point playing the what if game until you know more (still trying to practice what I preach).  I find this forum a helpful distraction.   I know some people plan something special as a distraction for the time between the scan and when the results come back.
  4. Like
    Curt got a reaction from Tom Galli in Pet Scan on May 21   
    Scanziety is one of the worst parts.  Try to find some distractions.  No point playing the what if game until you know more (still trying to practice what I preach).  I find this forum a helpful distraction.   I know some people plan something special as a distraction for the time between the scan and when the results come back.
  5. Like
    Curt reacted to Rower Michelle in Just diagnosed with Stage IV adenocarcinoma with EGFR mutation   
    Hi Joe, 
    Welcome from a fellow Stage IV NSCLC mutant.  I have a slightly different version with ALK Positive taking a drug similar to Tagrisso called Alectinib (its from the same family of inhibitors). 
    I'm also from a big data background, in my last role, I worked for a Japanese Pharma Co on a joint project with IBM Watson. So for the first time in your life this is where the data points are a complete unknown. The drugs we are taking have just been approved by the FDA so it's impossible for oncologists to project a prognosis.  This is actually good news.  There are billions of investments into LC drugs now so the future is bright with over 900 EGFR clinical trials. 
    Here is some practical advice to get you through the next few weeks, which are undoubtedly the most difficult.  I'm seven months into this and doing very well.  So remember even on the darkest days, there is always HOPE. 
    1. Something More Than Hope by Diana Lindsay is the EGFR Stage IV survival guide.  
    2. Anti-Cancer Living by Lorenzo Cohen PHD (MD Anderson) is the how to fight manual
    3. Cancer Fighting Kitchen by Rebecca Katz will give you the basics on how to manage your diet.  On Tagrisso, it's best to drink it down with Organic Beet Juice. This will help manage the edema. 
    4. Exercise at least 30 minutes a day- this will help with the fatigue.  The idea is not to be a fitness maniac, just keep your body moving. 
    5. Contact your insurance company and ask for a case manager to be assigned.  Managing the insurance process is not simple and you do not want any surprise medical bills. 
    6. I understand the professional concern- during these initial weeks,  I'd encourage you to take short term disability to get your bearings. The HR Department will keep your information highly confidential.  The Tagrisso will work very fast (sometimes just a matter of days).  You will feel well enough to travel.  Consider getting out of the City and go somewhere restorative (We hit Amelia Island) 
    7.  Consider finding an Integrative Oncologist in collaborate with your medical oncologist.  These inhibitors have some minor side effects that the Integrative Oncs will work with you to manage (typically, a rash, fatigue or edema).  It's ALL manageable.  
    8. Give yourself permission to take time to adjust to this new normal.  We're so used to juggling so much it's a hard cycle to break. Some days for me it was one hour at a time. The emotions are intense, so let them out, don't stuff it in.  It took me about 3 months before I felt like myself again.  Everyone is different.  Eventually the good days will begin to outnumber the bad days. 
    There are a number of EGFR mutants on this forum taking Tagrisso and doing quite well. We're your new friends; you can trust this group with anything as we've all been there. 
    I hope the second appointment goes well and remember if there's anything you remember later that you may have forgotten, then you can always ask for another appointment.  It's a different orientation to learning how to be a patient with a chronic illness.  
    Michelle 
     
  6. Like
    Curt reacted to Rower Michelle in Newby Introduction   
    Brian-
    Your diagnostic presentation is very similar to mine.  I’m a 51 yo never smoker who was initially treated for allergies/post nasal/sinus infection that didn’t exist.  Eventually pneumonia set in, after a failed course of antibiotics, steroids & inhalers, a smart nurse ordered a CT before I was almost referred to infectious disease.  Two pulmonologists couldn’t figure it out; the biopsy was ordered to rule out a fungal infection or TB   
    My tumor is also in the lower right lung. Fortunately they were able to CT/biopsy it.  I’m sure in your case there will be a bio-marker test by Foundation One which is actually in Boston.  
    Today I’m benefiting from the treatment advances as my disease is stable.  I live life at 110% every day.  
    This group is like Noah’s Arc.  No matter what type of LC you have, you will not be alone.  We’re all in this boat together.  
  7. Like
    Curt got a reaction from LouT in Just diagnosed with Stage IV adenocarcinoma with EGFR mutation   
    Hi Joe.  I’m sorry to hear about your diagnosis.  I am 43 years old and had surgery (lobectomy) at MSK for Stage 1 Adenocarcinoma with an EGFR exon 19 mutation a couple of months ago.  I am a never smoker.  It took me a year of scans and eventually surgery to get a definitive diagnosis.  I too was very frustrated with all the uncertainty that surrounds diagnosis and treatment prognosis.  The good news is both have and are continuing to improve.  There are some affective treatments for EGFR mutations.  The statistics you find online are based on people that were diagnosed five years ago.  My father was diagnosed with Stage 4 LC cancer six years ago at age 58.  He did not have any genetic testing and a lot of the current treatments didn’t exist.  Even then the doctors never really discussed statistics and prognosis.   Doctors don’t like to have the prognosis conversation because it is different for everyone and the introduction of new treatments is changing the outcomes.   
    My advice for your second appointment is to write down all of the questions you have so you are sure to get them answered.  Find out what the treatment goal is.  Document everything.  If you don’t understand something and you want to ask the doctor to explain it to you.  
    I’m glad you found this group.  You’ll find a lot of support and more people with experiences closer to yours.  Never stop fighting!
  8. Like
    Curt reacted to LouT in Hello from a newcomer!   
    Hello Craig,
    Sorry to hear about your diagnosis, but glad you found this group.  You'll get a lot of good counsel, coaching and listening here.  I can tell you that I went through so much of the emotional journey that you are experiencing and every day brought a new set of emotions for me.  The more progress you make against the disease the more solid you'll begin to feel going into the future.

    Ask questions and look around, there is a load of information in this forum and I can say that it (and the great folks here) got me through more dark, lonely nights then I care to count.

    Lou
  9. Like
    Curt reacted to LouT in Newby Introduction   
    Hi Brian and welcome to the forum.  I'm a recent lung cancer patient and am, just now, recovering from my surgery (lobectomy) and I can tell you that you'll find a great group of people here of varied experiences who will provide support as you go through this process.

    I can tell you that when I was going through my "diagnostic phase" I took notes at the appointments and also brought lists of questions to meetings in order to ensure that I understood everything and also got all my concerns addressed.  I recommend that approach or having another person who can help with that part for you.

    Stay calm, listen carefully and always take time to think clearly before taking a decision.  You'll get through this and many of us will be here as sounding boards and a source of first-hand information.

    BTW, like Michelle, I (raised in NY) am a Yankees fan, but I'll not let that affect the relationship between us. 

    Stay strong and don't catastrophize...take each bit of data clearly and you'll see your way to a solid plan to address this.  

    Lou
  10. Like
    Curt reacted to Susan Cornett in Newby Introduction   
    Hi, Brian. I'm glad you found us. I know this stage is overwhelming and your head is spinning. Trust me - I've been there. This community and this site will help you with information. The first thing I will tell you is to stay away from the statistics. Second, hang in there. Whatever your diagnosis or treatment plan, someone here has been down that same path. 
    Let us know how we can support you.
  11. Like
    Curt got a reaction from Brian1969 in Newby Introduction   
    Hi Brian.  I’m sorry to hear about your struggles but glad you found this site.  The initial diagnostics and testing (and inevitable waiting) is really tough.  Hang in there.  You’ll find plenty of support here if you need it.  
  12. Like
    Curt reacted to LexieCat in Tumor not gone after Chemo/Radiation   
    Hi there, and welcome.
    I'm sorry to hear about your brother's diagnosis.  There's really no way to know how long someone with advanced lung cancer may live.  We have quite a few people here on the forums who are doing well several years after diagnosis with advanced cancers.  What you read in the survival statistics is pretty scary, but it's important to know a couple of things.  First, the stats represent AVERAGES.  So many people survive for much longer than the average would suggest.  Of course, some people survive for shorter periods of time, too, but a lot depends on the exact type of lung cancer, the person's age and health (other than the cancer), and a lot of other variables that have yet to be understood.  The other thing to realize is that the stats focus on a five-year survival period, meaning the stats apply to people diagnosed more than five years ago.  There have been many advances in the treatment of lung cancer in the past few years, and new discoveries are leading to new, better treatments all the time.  So there IS cause for hope.
    Glad you found us--this is a great place for information and support.
  13. Like
    Curt got a reaction from CSmith in Hello from a newcomer!   
    Hey Craig.  Telling people about this diagnosis is tough.  I’ve had to tell family, friends, employees, vendors and customers over the last two months.  I share what I’m comfortable with.  I use it as an opportunity to raise awareness of the disease, there is so little understanding of it with a very heavy bias because of the smoking aspect.  I try to focus on the positive outcomes and treatment advancement when discussing it.  I will say it is helpful to try and  find someone “else” you can have the less positive “real” conversations with.  I found that while I as trying to put on a positive image I wasn’t letting all the negative stuff out.  On the outside I was positive but on the inside was feeling pretty negative at times.  I had to find a way to let the negative feelings out to make room for the positive ones.  
  14. Like
    Curt got a reaction from BridgetO in Scared of upcoming lung surgery, especially aftermath   
    It’s a firm memory foam pillow with a gradual elevation.  Here is a link https://images.app.goo.gl/AftAuuPLvSrxxBSv6.  I am a side/stomach sleeper but found myself sleeping on my back on the wedge pillow with softer pillows on my right side. I’d describe it as sleeping on my back but leaning to the left.  The pain medication def helps.  It’s amazing how well they can manage your pain.  I had two small incisions under my right arm.  One up by my armpit and a second one by my ribs.  Those are the two major areas for VATs.  I had a third incision on right side closest to my back, that was the least painful of all three.  
  15. Like
    Curt reacted to Irka in Scared of upcoming lung surgery, especially aftermath   
    Thanks, Curt, for your heartening response.  Yes, I have seen the wedge pillows advertised before & even considered getting one to help acid-reflux.  The latter hasn't bothered me too much, so I passed.  It's very encouraging to learn of your successful experience with VATs.  I'll be having the robotic-assisted version called "RATs."  But I don't want to use that acronym as I have a phobic fear of rats!
    Bottom line for me is that I have to steel myself & go through the step-by-step journey of treatment.
    I sincerely hope you continue to do well.
    Irka
  16. Like
    Curt reacted to Deb W in Scared of upcoming lung surgery, especially aftermath   
    Hi Irka,
    I am 6 weeks post VATS robotic surgery  - removed 1/3 of left upper lobe and a small resection on the lower left lobe.    I actually played a little tennis yesterday...3 weeks weeks ago I would have never believed this  possible.  It  is remarkable how fast the body can heal.    I agree with Curt, Lexie and Roz and they've been so helpful to me during this journey.
    Best,
    Debbie
     
     
     
     
  17. Like
    Curt got a reaction from LexieCat in Scared of upcoming lung surgery, especially aftermath   
    It’s a firm memory foam pillow with a gradual elevation.  Here is a link https://images.app.goo.gl/AftAuuPLvSrxxBSv6.  I am a side/stomach sleeper but found myself sleeping on my back on the wedge pillow with softer pillows on my right side. I’d describe it as sleeping on my back but leaning to the left.  The pain medication def helps.  It’s amazing how well they can manage your pain.  I had two small incisions under my right arm.  One up by my armpit and a second one by my ribs.  Those are the two major areas for VATs.  I had a third incision on right side closest to my back, that was the least painful of all three.  
  18. Like
    Curt reacted to LouT in Discharged Today   
    Hi everybody
    Just to let you know I was discharged today. I'm super happy and I'm feeling pretty good. I'll definitely be using a lot of the tips and hints that you've all sent me. I thank you all for the support going through this and I look forward to helping someone else come through this very serious type of operation in the future.
    Lou
  19. Like
    Curt got a reaction from LouT in Discharged Today   
    Good stuff Lou.  There’s no place like home.  
  20. Like
    Curt got a reaction from Rower Michelle in Hello from a newcomer!   
    Hey Craig.  Telling people about this diagnosis is tough.  I’ve had to tell family, friends, employees, vendors and customers over the last two months.  I share what I’m comfortable with.  I use it as an opportunity to raise awareness of the disease, there is so little understanding of it with a very heavy bias because of the smoking aspect.  I try to focus on the positive outcomes and treatment advancement when discussing it.  I will say it is helpful to try and  find someone “else” you can have the less positive “real” conversations with.  I found that while I as trying to put on a positive image I wasn’t letting all the negative stuff out.  On the outside I was positive but on the inside was feeling pretty negative at times.  I had to find a way to let the negative feelings out to make room for the positive ones.  
  21. Like
    Curt reacted to Rower Michelle in Hello from a newcomer!   
    Hi Craig, 
    Great to hear from you!  I appreciate the additional reading material.  We need all the inspiration we can get to fight this ALK monster!  You are in the process of transitioning to FULL SURVIVOR mode.  It's empowering.  Every once in a while the worry monkeys will hit out of nowhere.  This seems to happen to most of us. My doc believes because the Alectinib passes the blood brain barrier, our ability to process information and the "coping" section of our brains gets somehow impacted.  The key is to learn how to "ride" the day out.  The anxiety will pass.  
    Fortunately, I had already filed for disability when I had pneumonitis and plural effusion so I didn't have face to face meetings with my customers- just the sad phone calls.  It's like PTSD, relieving the trauma all over again.  I developed about a 90 second elevator pitch that kept my story pretty succinct and ended on a hopeful note and some stats about LC under funding.  I leave out the Stage IV part because it just freaks people out.  
    The fatigue is part of the ongoing side effect so learning how to chunk things down is helpful and takes a little while to figure it out.  I get acupuncture once a week which helps. I totally get the aches and pains.  My onc has a motto of "ABC" alway bet on cancer.  I landed in the ED for a simple fever of unknown origin. Turned out to be nothing but in our case could have been a pulmonary embolism.   I tell my onc about everything-almost to the point I feel like a hypochondriac.  Better to over report than miss something.  
    The trips to the clinic will get spaced out over time and your new normal will soon be on the horizon.  I hope you are able to join us for the ALK Summit in Atlanta.  I think it will be inspiring to meet our peers, some of whom are in the ten plus year club.   
    Glad to hear that you feeling better.  I say that this journey is like the Tom Petty song,  We're learning to fly but we ain't got wings.  Each day no matter how fatigued I am, I choose to FLY.  
    Have a great week.  
    Michelle 
  22. Like
    Curt reacted to LexieCat in Session at Ann B. Barshinger Cancer Institute, Lancaster PA   
    Hi, there--glad to hear things are moving along!  The surgery itself is nothing to be terrified about.  My C-section was more painful and took longer to recover from.  I notice zero effect on my breathing with my upper left lobe removed.  I feel a tiny twinge if I have a sharp intake of breath (e.g., yawning or sneezing), but it doesn't hurt--it's just a twinge.  
    Are you getting settled from the move?
    I'd suggest you do whatever physical stuff may still need to be done (unpacking, rearranging, etc.), just because it will be 3-4 weeks before you feel like doing a lot of physical activity.  But I was taking mile-long walks only a couple of weeks after my surgery.  Do your breathing exercises after surgery--that will help speed your recovery.
    Seriously--try not to worry.  It's not a difficult surgery from the patient point of view.
  23. Like
    Curt reacted to BridgetO in Session at Ann B. Barshinger Cancer Institute, Lancaster PA   
    Hi Irka, I had a lower right lobectomy about 2-1/2 years ago. The also took out a bunch of mediastinal (center of the chest) lymph nodes. It was by VATS (video assisted). The surgery went smoothly and was fairly easy, as surgeries go anyway-- any general anesthesia surgery is serious. My recovery was pretty fast, too. The robotic should be as easy on you as the VATS. Open surgery is  harder and has a longer recovery time, ususally. If you have any questions,  My number one recommendation is to get a foam wedge pillow. After surgery you'll be more comvfortable and breathe easier with your upper body (not just head) elevated. I tried to acheive this with other pillows but only ended up with a stiff neck. The wedge was a godsend!
  24. Like
    Curt reacted to LouT in Lou vs. the Chest Tube   
    Thanks for all the great info everybody.  You can trust that I'm taking your experiences and counsel seriously.
    As of today my air leak has closed, my systems are working and I'm moving around well. I hoped all that would have me going home tomorrow but my chest wounds is still putting out a lot of fluids and the doctor wants that to go down before I can go home.  They've also moved me from Tramadol and Delaudid to Tramadol and Oxycodone. The pain isn't as relieved with the oral meds but I've been told that once the chest tube comes out they will be more than adequate. So I'm doing the walks, spirometer, stretches and everything else they ask and I'm ready to go home. It could happen tomorrow or Tuesday and I'll update here once I know. 
    Thanks again for the great input. 
    Lou
  25. Like
    Curt got a reaction from LouT in Lou vs. the Chest Tube   
    You have to do what your body can tolerate.  Pushing through the pain is NOT something you should do, just do what you can tolerate without being in pain.  
    I can’t believe I forgot to mention the sleeping part.  Hospitals are the worst place for sleep.  They are always poking at you and they are noisy.  I had a pair of noise cancelling headphones and would play nature sounds all day and night.  I used them even when I got home to relax (nature sounds) and to motivate me to exercise (Metallica).  They were a god sent.  I’m actually planning on donating some to the hospital where I had surgery.  I really do believe they helped me with my recovery.  I was much more relaxed when they were on, which was almost all the time.  Even just the white noise cancelling sound soothed me.
    Some other tips for sleeping.  You are going to want to be propped up at home when sleeping.  Either a wedge pillow or a firm couch cushion under softer pillows should do do the trick.  Also put a pillow along your right side that you can lean against and your arm can rest on.  If your incisions are on your right side you’ll likely sleep on your back but leaning towards your left.  You may also want a smaller pillow to squeeze and keep your arm elevated off your incisions.  I used that same smaller pillow to walk around.  It kept my arm from leaning on the incisions.   I slept a LOT when I got home.  I’ve never felt tired like that before.  The exhaustion lasted about two weeks.  I would wake up, eat breakfast, walk around my house, sit in a chair, then take a nap.  Wake up, eat lunch, walk around my house, take a shower, then take a nap.  I’ve never been a day napper but I was taking a lot of them after surgery.  I think it was part physical and part psychological.  It’s a lot to handle in both regards.  It gets better.  
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