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Rower Michelle

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  1. Like
    Rower Michelle got a reaction from BeachGirl in First Time Out   
    Hi Tom, 
    Hahaha!   So you made it out the front door, progress!  Our neighborhood has finally "cleared out" with our County back "open" so now I can go out for walks without having to worry about overcrowded walking trails! 
    I did the ZOOM meet up last Friday with Katie Brown and I've got to say it was a BLAST to "meet" some new people.  I'm so Zoomed out with my circle of peeps, really this lock down is getting old.  We played some games and chatted about normal everyday stuff.   
    I did see Rush's press release, I wish he would be more vocal about his treatment for the greater benefit, same goes for Joe Biden's young press secretary TJ Ducklow.   We could have a national platform.   Even my own family can't say the word lung cancer--- they each have their own code name for it!!  We still have a long way to go.  
    MB- would hardly consider you a flake so it would be so much fun to "see" you!   
    Michelle 
  2. Like
    Rower Michelle reacted to BridgetO in Husband restarting Chemo   
    Hi Tracy and welcome. Your husband has lived for 10 years at stage 4! Wow! No reason he shouldn't go on living. I understand wanting to travel, Prior to my lung cancer,, I had a rare gynecologic cancer that was stage 3. I was in a support group where I met several women who had stage 4 ovarian caner and who were having chemo for recurrence.Three women were particularly inspiring to me because of the way they were choosing to live their lives, including travel. One went to China in between infusions and she also continued to ride her horse. Another said she decided to travel because, as she said " If I'm going to fight for my life, it has to be a life worth living". She went on a cruise to the Galapagos, got sick and had to be airlifted out.  She said "Oh well, I had good travel insurance."  A few months later, she went on a cruise to the Arctic where she took great photos of polar bears.
    I don't want to recommend going against doctors recommendations, but on the other hand we each need to get advice and then decide what is important to us and what risks are tolerable to give us  a good  quality of life.  This is all the more so if we have a disease that is considered  'terminal"-- whatever that means.  Having known these traveling women has made me much less scared of cancer. 
    Hang in there!
    Bridget O
     
  3. Haha
    Rower Michelle reacted to Tomm in Durvalumab   
    Barb     Great news! When I got my news last week I treated myself to a piece of chocolate cheese cake... give your self a treat for the year you invested in Durva.
    Grahame  ..  enjoy the wedding and the cake that goes with it . That's really fast good news on you progress.
    Lindsay ...Hope you get great CT result .. #10 already ..your on your way
    thanks everyone for the good wishes ..I hope you all enjoy the season
    Q:  What do you get when you combine an elephant with a fish?
    A: Swimming trunks!
    Q:  Why don’t oysters share their pearls?
    A: Because they’re shellfish!
     
  4. Like
    Rower Michelle got a reaction from Tom Galli in EGFR exon 19   
    Hi Jenny,
    Ha.  Welcome to the mutant club!  You will also find a vibrant EGFR community on Facebook (Lungevity) and the EGFR group.  EGFR is one of the most “common” mutation.  
     
    You might also want to check out the book by Diana Lindsay, “Something More Than Hope” a long term EGFR survivor.  
     
    Tagrisso has a good track record, there are some side effects but they will be very manageable.  
     
    Carry on! 
    Michelle
  5. Like
    Rower Michelle reacted to Barb1260 in Durvalumab   
    Well another CT in the bag. Doc said go live your life and I’ll see you in November. 
  6. Like
    Rower Michelle reacted to Lindsay in Durvalumab   
    That’s awesome Barb! I just had my first CT through treatment on Tuesday, and will get my results next week! 
     
    Grahame, nice to hear you’re seeing results too! I’m doing my treatments every 4 weeks, I go for number 5 next week, which I guess technically would be #10 given I have a double dose. Good luck to you!   
  7. Like
    Rower Michelle reacted to Grahame Jelley in Durvalumab   
    Great news Barb. Sitting in chair for # 10 today. Lesion shrunk +\- 50% ,mediastinal nodes reported smaller , mild radiation scarring . Physically doing reasonably well. Looking forward to daughters wedding next month. Bonus as at diagnosis October 2019 that was not a “given”. 
     
  8. Like
    Rower Michelle got a reaction from TJM in EGFR exon 19   
    Hi Jenny,
    Ha.  Welcome to the mutant club!  You will also find a vibrant EGFR community on Facebook (Lungevity) and the EGFR group.  EGFR is one of the most “common” mutation.  
     
    You might also want to check out the book by Diana Lindsay, “Something More Than Hope” a long term EGFR survivor.  
     
    Tagrisso has a good track record, there are some side effects but they will be very manageable.  
     
    Carry on! 
    Michelle
  9. Like
    Rower Michelle got a reaction from BridgetO in The wait begins   
    Hi Laura,
    First of all, I’m very sorry to hear about your Dad’s diagnosis.  There’s a saying here in this Forum, the waiting is the hardest part.  When we hear the word cancer, action Jackson kicks instincts kick in yet the medical community runs at a glacial pace (even before the pandemic). 
     
    Lung cancer today is rarely considered an emergency. I know how ridiculous that sounds.  In reality, lung cancer has come a long way since 1991.  In fact, there have been more treatment advances in the last five years than in the last fifty, even for small cell lung cancer.  Initially my prognosis was six to twelve months, but due to a new targeted therapy, doing well nearly two years later.  
     
    While this is counterintuitive, it’s best to hold off any any internet research about lung cancer. Most of it is really outdated with any study older than six months already being designated as old news.  There are great resources here in Lungevity and YouTube sessions from the Go2Foundation.  There are several videos on biopsy and something called biomarkers which determines the sub type of cancer. 
     
    As you alluded, it’s impossible to know what your Dad has until the biopsy and biomarker tests have been completed.  A biopsy in normal circumstances takes about 48 hours (in COVID areas it’s up to 5-7 days).  The biomarker tests are done by a specialty lab and take 7-10 days.  Aka more waiting.  
    Talking was pretty difficult for me in the beginning of all of this so I got a memo pad and wrote things down as a primary form of communication for a while. 
     
    From the sounds of what you’ve reported it appears as if things are on track.  Let us know what questions you have so we can jump in.  
     
    Welcome to the group. 
    Michelle
     
     
  10. Like
    Rower Michelle got a reaction from MBinOregon in I know I have cancer   
    I totally understand where you’re at right now.  I think most of us here do as well.   Feeling consumed is completely normal.  I know it’s hard and right now, the intensity of the emotion isn’t something you can will to stop.  There’s a gradual process with ups and downs. Eventually the ups outnumber the downs.  In the beginning this is an hour by hour process.  It took me six months and three CT scans before there was a sense of normalcy.  Try not to bottle up, if you want to cry, sob, if you want to yell, scream, angry-hit a pillow.   
     
    Keep talking to us, we will be here to help along the way.   You can do it.  Believe in yourself.  
     
    Michelle
  11. Thanks
    Rower Michelle got a reaction from Laura42 in The wait begins   
    Hi Laura,
    First of all, I’m very sorry to hear about your Dad’s diagnosis.  There’s a saying here in this Forum, the waiting is the hardest part.  When we hear the word cancer, action Jackson kicks instincts kick in yet the medical community runs at a glacial pace (even before the pandemic). 
     
    Lung cancer today is rarely considered an emergency. I know how ridiculous that sounds.  In reality, lung cancer has come a long way since 1991.  In fact, there have been more treatment advances in the last five years than in the last fifty, even for small cell lung cancer.  Initially my prognosis was six to twelve months, but due to a new targeted therapy, doing well nearly two years later.  
     
    While this is counterintuitive, it’s best to hold off any any internet research about lung cancer. Most of it is really outdated with any study older than six months already being designated as old news.  There are great resources here in Lungevity and YouTube sessions from the Go2Foundation.  There are several videos on biopsy and something called biomarkers which determines the sub type of cancer. 
     
    As you alluded, it’s impossible to know what your Dad has until the biopsy and biomarker tests have been completed.  A biopsy in normal circumstances takes about 48 hours (in COVID areas it’s up to 5-7 days).  The biomarker tests are done by a specialty lab and take 7-10 days.  Aka more waiting.  
    Talking was pretty difficult for me in the beginning of all of this so I got a memo pad and wrote things down as a primary form of communication for a while. 
     
    From the sounds of what you’ve reported it appears as if things are on track.  Let us know what questions you have so we can jump in.  
     
    Welcome to the group. 
    Michelle
     
     
  12. Like
    Rower Michelle got a reaction from jack14 in Scanziety again...   
    Keep on keeping on Jack.  It takes a little while for immuno to kick into gear.  Will keep praying! 
  13. Like
    Rower Michelle got a reaction from Tom Galli in Helping my dad with Fatigue   
    Hi Olivia,
    Yes, the fatigue comes with this territory.  Walking usually helps but if that’s not an option look for a Zoom restorative yoga class that can be done without props.  
    You might also want to check out some breathing exercises and Qi Gong Tapping on YouTube.   Try Andrew Weill  MD and Chinese tapping.  It’s something that can be done laying down to improve circulation and help boost energy.  
    Keep us posted! 
    Michelle 
  14. Like
    Rower Michelle got a reaction from Robert A. in Absolutely Disgusting.   
    God bless your Dad!  So sorry for your loss. Never easy at any age.   
  15. Like
    Rower Michelle got a reaction from Robert A. in Absolutely Disgusting.   
    Jeepers creepers, what a mess.  Well at least you’re learning how to work the system.  Play the “C” card to jump to the front of the line.  Worked for me too, got a same day x-ray if my knee.   
    Hoping the test results are a big nothing burger.  
  16. Like
    Rower Michelle reacted to TJM in I know I have cancer   
    It's a roller coaster ride for sure. Initial diagnosis late on a Friday was a gut punch.  But after all the consults, tests and getting a treatment plan was very calming. I wont bore you with all the twists in my case but again, starting the treatment with finding its not nearly as horrible as I imagined also calmed me.
    Now that I am nearing the end of my treatment I am feeling my stress level rise noticeably.  I think it's because once all the active treatment is finished I enter the unknown again. Will it come back and where? Plus always waiting on the next scan.
    Embrace the good days and get thru the bad ones as best you can. You are not alone.
    Peace
    Tom
     
  17. Like
    Rower Michelle got a reaction from TJM in I know I have cancer   
    I totally understand where you’re at right now.  I think most of us here do as well.   Feeling consumed is completely normal.  I know it’s hard and right now, the intensity of the emotion isn’t something you can will to stop.  There’s a gradual process with ups and downs. Eventually the ups outnumber the downs.  In the beginning this is an hour by hour process.  It took me six months and three CT scans before there was a sense of normalcy.  Try not to bottle up, if you want to cry, sob, if you want to yell, scream, angry-hit a pillow.   
     
    Keep talking to us, we will be here to help along the way.   You can do it.  Believe in yourself.  
     
    Michelle
  18. Like
    Rower Michelle reacted to Lisa Haines in Newly diagnosed   
    Gary,
        Feel free to ask any questions, we are all happy to share our experiences with you.    Much of what we have learned is because of what we've been through or because of others who shared their experiences with us.    I am very thankful to people I've met in Support Groups and would have been lost without them.   LUNGevety is an amazing group and I'm very thankful to be one of many members.   I'm also now very happy to be a Lung Cancer Advocate and love being able to help others.  
      PS: My hip surgery was "hip replacement" surgery and I'm now in the need of having my other hip done, but it's been put on hold because of Covid.   Hoping this time it all goes very well and I do not develop any problems. 
       In hindsight we now know that I never did really have "post op pneumonia", it was actually lung cancer that was missed on those chest xrays.  Just seems so surreal to think that everything up until the surgery was all fine, then just a month later I find out that I have Stage IV NSCLC that had already spread to my brain and caused the PE!   Clearly, this is a sneaky cancer and far too many of us do not find it until it's advanced.  Thankfully, we've come a long way in the past few years and now have more treatment options than ever before.
       
     
     
  19. Like
    Rower Michelle got a reaction from Tom Galli in I know I have cancer   
    I totally understand where you’re at right now.  I think most of us here do as well.   Feeling consumed is completely normal.  I know it’s hard and right now, the intensity of the emotion isn’t something you can will to stop.  There’s a gradual process with ups and downs. Eventually the ups outnumber the downs.  In the beginning this is an hour by hour process.  It took me six months and three CT scans before there was a sense of normalcy.  Try not to bottle up, if you want to cry, sob, if you want to yell, scream, angry-hit a pillow.   
     
    Keep talking to us, we will be here to help along the way.   You can do it.  Believe in yourself.  
     
    Michelle
  20. Like
    Rower Michelle reacted to CLM in Terrified newbie   
    Hi All, The diagnosis is stage IV non-small cell adenocarinoma. I’m waiting for the bio marker results, and I get the pet scan and mri later this week. The dr thinks I’ll be a good candidate for targeted therapy so crossing my fingers and toes for clean scans (other than what I already know), clean mri, and “good” mutation. Feeling all kinds of things! Working hard to remain positive and keep a healthy attitude. 
    ❤️
  21. Like
    Rower Michelle reacted to Tbaker in Saw doctor Thursday   
    Thank you all. 
    I'm still waiting to hear from  radiology for my appointment. 
    Nervous and hopeful all rolled into one. 
    I have developed a dry cough fingers crossed it's nothing. 
  22. Like
    Rower Michelle reacted to GaryG in Newly diagnosed   
    Lisa:Thank you so much for your response. Since I shared my story I waited desperately for a post like yours. You answered so many questions even after I spend days reading on this site and elsewhere. I am still waiting for the results of the final tests hoping for a mutation with an existing drug but seeing your results gives me hope and most importantly the will to fight. I will read your post each time doubt enters my mind . Thank you again for taking the time to share your experience. It meant so much. I wish you the very best.
    Gary.
  23. Like
    Rower Michelle got a reaction from Tbaker in Newly diagnosed   
    Hi Gary,
    I’m sorry that you’re in this situation, believe me when I say we understand what you are going through.   
     
    A word about the EGFR test, hopefully the oncologist is doing what is referred to as a full panel biomarker, also known as next generation sequencing/ comprehensive biomarker test.  (All means the same thing).  Why is this important?  It helps determine how to best match your treatment.   
     
    I had the EGFR and PDL-1 panel too.  I was negative for EGFR and had zero PDL-1.  I started the treatment that has been recommended to you also known as the triplet while we waited for the comprehensive panel to come in.   Turned out I had the ALK Positive mutation (common with zero PDL-1).  I was switched to targeted therapy (pills).  
     
    Stage 3b is actually pretty rare as most lung cancers are diagnosed at Stage IV.  As a result there is little consensus on how best to proceed        I would recommend obtaining a second opinion to ensure all your options, including cutting edge clinical trials have been evaluated   
    The triplet is now the standard of care for “garden variety” adenocarcinoma.  Many people here have had that regime and did quite well.  I’m sure you’ll hear from them soon.  
     
    Glad to have you here!
    Michelle

     
     
  24. Like
    Rower Michelle reacted to BridgetO in Scanziety again...   
    As Tom Petty sang "the waiting is the hardest part". Best wishes and keep us posted.
    Bridget O
  25. Like
    Rower Michelle reacted to MarieE in TABRECTA   
    Well, two weeks done with the pills. Main side effects for my husband are loss of appetite, nausea and fatigue. No swelling at this point. The doctor said the side effects could also be partially due to the radiation (just two more sessions after today) so hopefully they'll get better soon. Still nothing near what he experienced with chemo. His next scan will be in early August and blood work is next week.
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