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MBinOregon

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  1. Like
    MBinOregon got a reaction from ColleenRae in 2 years NED, now a nodule :(   
    Hi Mark,
    After the right pneumonectomy back in May 2018, all the scans were "fine" (will explain the quotation in a sec) until the latest CT last month.  They saw nodules in the right pleural area, right armpit lymph node(s) and behind right collar bone.  Followed up with PET scan.  A long story short, the tumor board decided they have been there "a while" (although I had been told "fine".  Yes, it's confusing to me too, anyway) and rather than putting me through an invasive biopsy, they decided to watch more closely, so I'm on 3 month CT scan schedule (I did enjoy 6 month schedule for a years. Sigh).  Stupid nodules... 
    Sending you warm thoughts,
    MB
  2. Like
    MBinOregon reacted to Babs in 2nd Opinion   
    Tom, Michelle, MB and Steff,
     
    Thanks so much for all of your input!  Great advice and insight.  It really does make me feel more at ease and justified in what I am doing. I will be meeting with her next week after my PET and will let y’all know how it went down.
    MB, you are a hoot!  I have also been known to kick some a$$ when need be so this was a much needed reminder that I am in charge.
    - Babs
  3. Like
    MBinOregon got a reaction from LexieCat in 2nd Opinion   
    Hello, Babs,
    I'm currently on my 4th med onc 😁 The reactions I've received varied from completely professional to pathetic defensiveness (my 2nd one really was a punk a$$ that I wanted so badly to smack around just for fun), but I've never once regretted it at all.  When I was new to this forum, one of Tom's response to my posting had (I see he said the same thing to you earlier 👍) "you are paying for a service" and that really resonated with me (I was already on my 2nd one by then) so the right next time I saw the 2nd onc, I told him to refer me to my 3rd one - I could have called the 3rd onc's office myself, but to get a faster appointment, it's always better if an onc calls.  Then sat back and watched him get all defensive (with a smirk on my face, I'm sure.  I don't usually control my unhappy face.) then asked him to make the call and left.  It is quite possible that my skin is thicker than most and/or I'm more opinionated/bull-headed than most 😆
    FYI, my 1st and 2nd oncs were in the same clinic and 3rd and 4th are in the different clinic.
    My hope is your onc behaves like an actual professional but if she doesn't, my take on that would be she wasn't meant to continue this journey with you.
    Good luck to you.🤞🙏
    MB
  4. Like
    MBinOregon got a reaction from Mblarner in Are there inoperable stage 3 survivors?   
    Hey there,
    My "cancer mentor/buddy" in Chicago whom I "met" (we were matched via different cancer patient supporting organization) 2 years ago had an inoperable (due to the location) stage 3 (forgot if she said 3A or 3B) NSCLC adenocarcinoma.  She had a hell of time with her treatments (she told me both chemo and radiation sent her to being in hospital for a couple of weeks), but she celebrated her 4 year anniversary early this year - all her scans since her treatments have been consistently clean, aka "NED".  At least here in US, the doctors do not use the term "cure", rather they say NED (no evidence of disease).
    We also have several members on this forum with the diagnosis of stage 4 and no surgery but have been rocking for years.
    MB
  5. Like
    MBinOregon got a reaction from catlady91 in Are there inoperable stage 3 survivors?   
    Hey there,
    My "cancer mentor/buddy" in Chicago whom I "met" (we were matched via different cancer patient supporting organization) 2 years ago had an inoperable (due to the location) stage 3 (forgot if she said 3A or 3B) NSCLC adenocarcinoma.  She had a hell of time with her treatments (she told me both chemo and radiation sent her to being in hospital for a couple of weeks), but she celebrated her 4 year anniversary early this year - all her scans since her treatments have been consistently clean, aka "NED".  At least here in US, the doctors do not use the term "cure", rather they say NED (no evidence of disease).
    We also have several members on this forum with the diagnosis of stage 4 and no surgery but have been rocking for years.
    MB
  6. Like
    MBinOregon got a reaction from Claudia in Friday Zoom Meetup Sign Up   
    I joined once last month (was not aware it was a weekly thing 😁) - Katie was awesome.  Michelle @Rower Michelle is too good at "guess what word is being described" game 🤣  Other than my "cancer mentor" in Chicago, that was the first time I talked to any lung cancer patients and it was very heartwarming as in "awww these are my peeps" kinda way.
    MB
  7. Like
    MBinOregon got a reaction from Tom Galli in 2nd Opinion   
    Hello, Babs,
    I'm currently on my 4th med onc 😁 The reactions I've received varied from completely professional to pathetic defensiveness (my 2nd one really was a punk a$$ that I wanted so badly to smack around just for fun), but I've never once regretted it at all.  When I was new to this forum, one of Tom's response to my posting had (I see he said the same thing to you earlier 👍) "you are paying for a service" and that really resonated with me (I was already on my 2nd one by then) so the right next time I saw the 2nd onc, I told him to refer me to my 3rd one - I could have called the 3rd onc's office myself, but to get a faster appointment, it's always better if an onc calls.  Then sat back and watched him get all defensive (with a smirk on my face, I'm sure.  I don't usually control my unhappy face.) then asked him to make the call and left.  It is quite possible that my skin is thicker than most and/or I'm more opinionated/bull-headed than most 😆
    FYI, my 1st and 2nd oncs were in the same clinic and 3rd and 4th are in the different clinic.
    My hope is your onc behaves like an actual professional but if she doesn't, my take on that would be she wasn't meant to continue this journey with you.
    Good luck to you.🤞🙏
    MB
  8. Like
    MBinOregon got a reaction from LexieCat in Back to the drawing board...   
    Hi Terri,
    URRRRRRRRRRRGH & ditto to what Michelle said 😁
    Hoping for a good scan... 🤞 and may your shiny ebike take your mind off even just a bit...
    MB
  9. Like
    MBinOregon reacted to Rower Michelle in Back to the drawing board...   
    Hi Terri,
    Wow that’s not what you would expect after three years of good scans.  I’m sorry you’re having to got through the process all over.  Hopefully it isn’t anything, but if there’s something brewing this sounds like another early find.   You’ve given us such great advice here,  you’re far better prepared to ask questions and be an empowered consumer this go round.   Keep us posted.  Carry on. 
    Michelle
  10. Sad
    MBinOregon reacted to LexieCat in Back to the drawing board...   
    Thanks, Michelle,
    Yeah, it's just knowledge I was hoping not to have to actually USE again (as opposed to sharing). I'm still processing and the isolation these days doesn't help. I'm still working (from home--as I was before the pandemic, though travel is off the table at this point), but I'm actually on "vacation" this week. I bought myself an ebike, and was looking forward to getting some fun in. Anyway, the people I would normally talk stuff like this through with are all unavailable at the moment. Glad the forum is still here. 
    I had a meme I posted on my FB around the end of March, that said, "My 90-day trial of 2020 is up, and I'd like to cancel my subscription." What a sucky year this has turned out to be--all the way around.
  11. Thanks
    MBinOregon got a reaction from Deb W in Scanziety again...   
    Deb,
    🙏🤞 Wishing you a good scan AND not too long of a wait to get the results - the waiting is the worst part.
    MB
  12. Like
    MBinOregon reacted to Rower Michelle 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
  13. Like
    MBinOregon got a reaction from Roz in Introducing Myself   
    Hello, Jan,
    For me, reading a first post by someone new to this lung cancer world never gets any easier.  It brings me back to where I was when I was first diagnosed myself.  It was a few days before the Christmas and I did not think I'd be able to stop crying.  I just had some lingering cough after a cold, otherwise I was so perfectly fine, how can they say I have a lung cancer of ALL cancers?  So I get it.  We ALL get it.  More so than any of your family and friends will ever do.
    If you want to learn about lung cancer, browse around Lungevity site.  If you have any (specific, general or random) questions, this forum is the place.  If you need to vent, yup, you can do that here too.  If (well, WHEN) you need support, feel very free to ask for that here too.
    Here's my 2 cents for you:
    Make sure your med onc (aka "hematologist") is someone not only darn good, but someone you like.  This is the main doc in your oncology team.  S/he should give you treatment options and you should have the final say.  Have a note book and pen ready for each appointment (regardless with which doc) and write down all the questions you have in between appointments and write down what the doc tells you as, especially in the beginning, you'll be bombarded with the info on top of your wrecked emotional state.
    Lastly, I'm sending you a very germ free virtual BIG hug, hang in there, you TOO will be able to stop crying. 🙏
    MB 
  14. Like
    MBinOregon got a reaction from Roz in My way to say thank you   
    Hi Claudia,
    I remember you - so glad to hear you're doing well (knocking on wood, crossing finger and toes, good vibes and lots of prayers, and what else... all that 🤗). Welcome back and that's very nice of you to donate to Lungevity.  I also am a yoga teacher (about 15 years) - I right away thought about offering online classes via zoom when the gym closed, but I also have a full time job (I'm an IT nerd 🤓 and proud of it, LOL), so between that, my own workouts and I've also been taking online yoga training (every weekend) to complete RYT 500 so I didn't have any extra time to even tinker with that at all (yes, I'm a very go, go, go... even through my treatments I didn't slow down much, at least I've stopped teaching HIIT 🤣).  The gym where I teach at just opened and I'm back to teaching as of this week - it is rather disappointing to see people not caring about social distancing at all, though 😒
    Thank you for all the kind words.  Keep us posted, have fun with your online classes.
    Sending warm thoughts,
    MB
  15. Like
    MBinOregon reacted to Tom Galli in New here, waiting for answers and scared   
    Sheryl,
    We are glad you found us. "Very suspicious for cancer" is a serious descriptor and looking suspicious after a PET is no better. As for terrified, we understand! We've all been there.
    So, here is how I would proceed.  I'd pray the 10mm nodule is indeed nothing to be concerned about. Here is my go to resource that explains pulmonary nodules and why they form. As you can see, they come in many types and sizes and most are not cancer. As for the PET, if you had more specific information about your PET, I might be able to explain "suspicious". Here is a blog I wrote some time ago that helps folks understand what a PET scan is, what is measured, and what standard uptake values (SUV) are of concern. It is a good idea to get actual copies of all scan and laboratory reports and keep them on file.
    You might use the time before your 15 July consultation to read into lung cancer and here is the best resource around. I would also recommend asking a family member or a close friend to attend your consultation and even ask the doctor if you could record the session. The vocabulary of our disease is daunting and it is helpful to have a second set of ears or a resource to answer the inevitable what was said question that seems to occur on the car ride home. Know also that a biopsy is the only way a lung cancer diagnosis can be confirmed and that is unlikely to occur at your forthcoming pulmonology consultation. 
    I do pray your pulmonology consultation results in a finding of no evidence of disease (NED). 
    Stay the course.
    Tom
  16. Like
    MBinOregon reacted to Tom Galli in I am new. I have NSCLC Stage IV. Need support.   
    Josh,
    Welcome here. I'm another Tom on the forum.
    Survival is daunting, especially in these days of COVID-19 isolation. While I'm not in treatment, I have but 30% pulmonary capacity as a result of my many treatments and have been confined to quarters by all my physicians. It is hard to see these glorious days of summer roll out through a window, so I understand what you feel.
    To your question, what is a near normal lung cancer survivor's lifestyle? Well for me, it was vastly different than my pre-cancer lifestyle and more challenging, I had to make a new life, my own new normal.  Acceptance of this reality was my hardest barrier.  Many things kept tugging me back to my very active pre-lung cancer lifestyle. I went back to work after a year's worth of surgical mayhem only to encounter multiple recurrences that debilitated me and increased my stress level. Coping with side effects and chronic pain joined the difficult and stress inducing challenge of design, development and production on a schedule. I toughed it out for six years and finally ran out of tough. So obviously, trying to live a pre-lung cancer lifestyle with post treatment limitations didn't work for me. Moreover, because everything work-wise was vastly harder and because I was no longer meeting my standard of performance, depression stepped into the party. I guess advice based on my experience is learn to accept there will be a new normal life and you'll need to make it.
    What are elements of my new normal. Before COVID, they were once-a-year odyssey trips to Europe starting with a transatlantic cruise. This year, COVID required we cancel our Greek Isle cruise. I also am writing a novel and for an engineer, that is a very challenging endeavor. But it requires me to engage my mind in meaningful activity and that seems to be my key ingredient to new lung cancer survival normal lifestyle. I also find this forum to be very therapeutic. Helping people cope with treatments, side effects and outcomes makes me feel good and needed. These are important also. I could continue the list but one defining characteristic of my pre and post lung cancer life style is that my activities are mostly all new. Is survival worth it? For me, absolutely and I hope you quickly find your stride.
    There are many long tenured survivors here and each has had to remake a life after lung cancer. I'm sure many more will offer their insight.
    Stay the course.
    Tom
  17. Like
    MBinOregon got a reaction from Tom Galli in Introducing Myself   
    Hello, Jan,
    For me, reading a first post by someone new to this lung cancer world never gets any easier.  It brings me back to where I was when I was first diagnosed myself.  It was a few days before the Christmas and I did not think I'd be able to stop crying.  I just had some lingering cough after a cold, otherwise I was so perfectly fine, how can they say I have a lung cancer of ALL cancers?  So I get it.  We ALL get it.  More so than any of your family and friends will ever do.
    If you want to learn about lung cancer, browse around Lungevity site.  If you have any (specific, general or random) questions, this forum is the place.  If you need to vent, yup, you can do that here too.  If (well, WHEN) you need support, feel very free to ask for that here too.
    Here's my 2 cents for you:
    Make sure your med onc (aka "hematologist") is someone not only darn good, but someone you like.  This is the main doc in your oncology team.  S/he should give you treatment options and you should have the final say.  Have a note book and pen ready for each appointment (regardless with which doc) and write down all the questions you have in between appointments and write down what the doc tells you as, especially in the beginning, you'll be bombarded with the info on top of your wrecked emotional state.
    Lastly, I'm sending you a very germ free virtual BIG hug, hang in there, you TOO will be able to stop crying. 🙏
    MB 
  18. Like
    MBinOregon got a reaction from Claudia in Introducing Myself   
    Hello, Jan,
    For me, reading a first post by someone new to this lung cancer world never gets any easier.  It brings me back to where I was when I was first diagnosed myself.  It was a few days before the Christmas and I did not think I'd be able to stop crying.  I just had some lingering cough after a cold, otherwise I was so perfectly fine, how can they say I have a lung cancer of ALL cancers?  So I get it.  We ALL get it.  More so than any of your family and friends will ever do.
    If you want to learn about lung cancer, browse around Lungevity site.  If you have any (specific, general or random) questions, this forum is the place.  If you need to vent, yup, you can do that here too.  If (well, WHEN) you need support, feel very free to ask for that here too.
    Here's my 2 cents for you:
    Make sure your med onc (aka "hematologist") is someone not only darn good, but someone you like.  This is the main doc in your oncology team.  S/he should give you treatment options and you should have the final say.  Have a note book and pen ready for each appointment (regardless with which doc) and write down all the questions you have in between appointments and write down what the doc tells you as, especially in the beginning, you'll be bombarded with the info on top of your wrecked emotional state.
    Lastly, I'm sending you a very germ free virtual BIG hug, hang in there, you TOO will be able to stop crying. 🙏
    MB 
  19. Like
    MBinOregon got a reaction from Rower Michelle in Introducing Myself   
    Hello, Jan,
    For me, reading a first post by someone new to this lung cancer world never gets any easier.  It brings me back to where I was when I was first diagnosed myself.  It was a few days before the Christmas and I did not think I'd be able to stop crying.  I just had some lingering cough after a cold, otherwise I was so perfectly fine, how can they say I have a lung cancer of ALL cancers?  So I get it.  We ALL get it.  More so than any of your family and friends will ever do.
    If you want to learn about lung cancer, browse around Lungevity site.  If you have any (specific, general or random) questions, this forum is the place.  If you need to vent, yup, you can do that here too.  If (well, WHEN) you need support, feel very free to ask for that here too.
    Here's my 2 cents for you:
    Make sure your med onc (aka "hematologist") is someone not only darn good, but someone you like.  This is the main doc in your oncology team.  S/he should give you treatment options and you should have the final say.  Have a note book and pen ready for each appointment (regardless with which doc) and write down all the questions you have in between appointments and write down what the doc tells you as, especially in the beginning, you'll be bombarded with the info on top of your wrecked emotional state.
    Lastly, I'm sending you a very germ free virtual BIG hug, hang in there, you TOO will be able to stop crying. 🙏
    MB 
  20. Like
    MBinOregon got a reaction from LouT in Introducing Myself   
    Hello, Jan,
    For me, reading a first post by someone new to this lung cancer world never gets any easier.  It brings me back to where I was when I was first diagnosed myself.  It was a few days before the Christmas and I did not think I'd be able to stop crying.  I just had some lingering cough after a cold, otherwise I was so perfectly fine, how can they say I have a lung cancer of ALL cancers?  So I get it.  We ALL get it.  More so than any of your family and friends will ever do.
    If you want to learn about lung cancer, browse around Lungevity site.  If you have any (specific, general or random) questions, this forum is the place.  If you need to vent, yup, you can do that here too.  If (well, WHEN) you need support, feel very free to ask for that here too.
    Here's my 2 cents for you:
    Make sure your med onc (aka "hematologist") is someone not only darn good, but someone you like.  This is the main doc in your oncology team.  S/he should give you treatment options and you should have the final say.  Have a note book and pen ready for each appointment (regardless with which doc) and write down all the questions you have in between appointments and write down what the doc tells you as, especially in the beginning, you'll be bombarded with the info on top of your wrecked emotional state.
    Lastly, I'm sending you a very germ free virtual BIG hug, hang in there, you TOO will be able to stop crying. 🙏
    MB 
  21. Like
    MBinOregon got a reaction from sashjo in Introducing Myself   
    Hello, Jan,
    For me, reading a first post by someone new to this lung cancer world never gets any easier.  It brings me back to where I was when I was first diagnosed myself.  It was a few days before the Christmas and I did not think I'd be able to stop crying.  I just had some lingering cough after a cold, otherwise I was so perfectly fine, how can they say I have a lung cancer of ALL cancers?  So I get it.  We ALL get it.  More so than any of your family and friends will ever do.
    If you want to learn about lung cancer, browse around Lungevity site.  If you have any (specific, general or random) questions, this forum is the place.  If you need to vent, yup, you can do that here too.  If (well, WHEN) you need support, feel very free to ask for that here too.
    Here's my 2 cents for you:
    Make sure your med onc (aka "hematologist") is someone not only darn good, but someone you like.  This is the main doc in your oncology team.  S/he should give you treatment options and you should have the final say.  Have a note book and pen ready for each appointment (regardless with which doc) and write down all the questions you have in between appointments and write down what the doc tells you as, especially in the beginning, you'll be bombarded with the info on top of your wrecked emotional state.
    Lastly, I'm sending you a very germ free virtual BIG hug, hang in there, you TOO will be able to stop crying. 🙏
    MB 
  22. Like
    MBinOregon reacted to Rower Michelle in Introducing Myself   
    Hi Jan,
    Welcome.  We understand what you are describing all too well.  Almost 90% of lung cancers are diagnosed in similar circumstances.  Often times there are no warnings and your life is upside down in no time. 
    Although it doesn’t feel like it now, there is hope on the horizon.  Lung cancer treatment has grown exponentially over the last five years.  I was diagnosed at Stage IV as a never smoker, initially with a poor prognosis but biomarker testing revealed a mutation that responded to an oral treatment called targeted therapy.  That was almost two years ago.  
     
    We advise everyone in the beginning to stay off the internet as data that is six months old is already old news.  
    The diagnostic process is often a hurry up and wait but it is critical to matching the treatment plan.  You’re in a good area with access to some of the country’s top specialists.   There is a lung cancer survivor from Whidbey Island, Diana Lindsay who wrote a book on how to navigate the treatment plan called “Something More Than Hope”.   I think you will find it helpful  
    Take it one day at a time, know the extreme emotions right now will eventually pass as you start the treatment plan.  There are brighter days coming and we’ll be here for you to help you get there. 
     
    Michelle
     
     
  23. Like
    MBinOregon got a reaction from Steff in Friday Zoom Meetup Sign Up   
    I joined once last month (was not aware it was a weekly thing 😁) - Katie was awesome.  Michelle @Rower Michelle is too good at "guess what word is being described" game 🤣  Other than my "cancer mentor" in Chicago, that was the first time I talked to any lung cancer patients and it was very heartwarming as in "awww these are my peeps" kinda way.
    MB
  24. Like
    MBinOregon got a reaction from TJM in Chemo done   
    Tom,
    I hope you enjoyed the first (long) weekend post-chemo.  Good luck with the rad onc appointment - my rad onc is my very fav doc of all time, so I hope yours is awesome as well.  Also hoping the rad treatments will be easier on you than your chemo.🙏🤞  For me, I needed a new word for "extreme, ridiculous level of fatigue beyond any words" by the third week and my throat felt like I swallowed (not pits) entire peaches (4-5 of them stacked up in my throat!). 😖
    Sending warm thoughts,
    MB
  25. Like
    MBinOregon got a reaction from Rower Michelle in surgical removal of right upper lung   
    Hi there,
    My surgery was more recent than Tom's, so I'll just add my experience -
    I also had a pneumonectomy of right lung - May 2018.  I have 7-8 inch horizontal incision on my right side.  They broke my 6th rib - was told it's a possibility and common.  I didn't have a chest tube (my surgeon told me they don't put a tube for pneumonectomy, only for lobectomy or wedge resection) and I didn't have any sutures externally - they glued my skin back together, so I didn't have any suture removal, naturally.  I was told I'd be released 4-5 days after the surgery if everything goes well - luckily it did and I went home after 3 days.  With a lobectomy, I heard (from my surgeon as well as others who's had one) you don't feel the difference with your breathing capability, but with one entire lung (3 lobes) gone, I surely felt it.  The recovery wasn't super bad, I thought.  I went back to work (as in working from home) a week after my surgery - I suggest you don't return that fast (I'm a bit nuts).  Went back to yoga as soon as I was allowed (8 weeks after the surgery) and went back to running 4-5 months after the surgery.  I should add I was in the tip top physical shape/fitness before the surgery - was told thus my fast recovery.  
    Read through what Tom wrote and let us know if you have any specific questions... Either way, I wish you a successful surgery and smooth recovery.
    MB
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