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MBinOregon

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Posts posted by MBinOregon

  1. Hi Laura,

    Sorry to hear of your dad's diagnosis.  Mine is NSCLC (non small cell lung cancer), so obviously I'm not familiar with SCLC, but I'll just share my thoughts, hopefully I don't come across too blunt or callous.  That much of tumor in his lungs is worrisome.  If I were in your shoes, I'd go see him now.  I say this for several (mostly personal) reasons. 

    1. the initial diagnosis and testing/scan phase were the worst for me, emotionally.  I could've used a shoulder to cry on.  Perhaps your dad could also use that shoulder or a hug right now. 

    2. my limited understanding of SCLC is it's faster developing than NSCLC.   My friend's mom who was diagnosed stage 4 (NSCLC, she was a never smoker like myself) about a year ago was told she had 12-16 months.  She passed away 5 months later, a few days before last Christmas.  Being elderly aside (I think she was almost 80), she never was physically active, but of course I don't know if that attributed to her passing much sooner than anticipated.

    3. There will be A LOT of info thrown at your dad.  He WILL need an advocate who can process the info, give him the cliff note version of the info and help him make decisions, even if he has the very best care in the world, rather than just following whatever doctors say.

    Hopefully you find it a bit helpful.  If not, how about I just pray for you and your dad? 

    Let us know if you have any other questions or need support.  We have lots of care givers on this forum with LOTS of care giving experiences.

    MB

  2. 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

  3. 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. 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 

  5. 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

  6. 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

  7. ok, THAT is a major bummer.  "compassionate care" my hiney 😒 (I will share how I really feel next time, but for now, I'm controlling myself 🤣)

    There are several folks here who are on (or have been on) Durva - there's even a dedicated area on this forum.  Wishing you a great result with Durva, keep us posted and let us know how we can help you.👍

    sending warm thoughts,

    MB

  8. Hi there, Lindsay,

    I just might be the only other ROS-1 person on this forum.  I was told ROS-1 people tend to be never-smoker, young(-ish) women - I've never been the one to follow any trend/fad, but here I am. 😣

    I do believe Crizotinib is available in Canada - I'm surprised your medical onc has not mentioned it as there are at least one targeted therapy option for several mutation types.  I was on crizotinib for 2 years.  

    Let us know if you have any questions.  If you need to vent, or just looking for support, this is the place - I've done lots of both 😁 and the same "you got this" from a fellow lung cancer fighter hits you very differently than any of your friends/family's (who has never gone through any cancer journey) "you got this".

    MB

  9. Tom,

    I thought you actually ventured OUT, like to the world! But it was to your front yard - that got me laughing and congrats! 😂

    When I complained the lack of attention on lung cancer overall, my rad onc said "true, but since lung cancer is so common, it gives the pharmaceutical companies the reasons to invest in it, thus all the recent advancement..." - so there is that.  Certainly didn't think about it that way.

    Although I'm rather interested in the weekly (I'm guessing?) zoom meeting, given I don't get off work (online lately, obviously) til 3-330pm pacific time, I don't know if I should ask to be invited just to be a total flake 😬 hmmm.

    Pondering how to be not flakey,

    MB

  10. Terry,

    Sorry to hear your updates - it's always so sad to read any updates like this on this forum... I think you know what I mean.  I applaud your keeping faith 👍 and I'm cheering for you from far.

    I hope you/your pharmacist get access to Lorlatinib and I pray that it will be an effective treatment for you.🙏

    Sending warm thoughts,

    MB

  11. 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

  12. 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

  13. Just a quick update - it took me several days to wrap my head around this...

    Had a PET last Monday and my rad onc called later that day with the result that pretty much confirmed the CT findings - "very concerning".  He said he'd bring my case to the weekly tumor board on Friday.  At least I had somewhat prepared myself for this news, so I was back to my "let's do this!" mode (ok, more or less).

    Then late in the afternoon on Friday, my med onc called and started explaining both PET and CT scans.  (My rad onc starts with "it's good", "it's bad" THEN he explains which I love, but NOT my med onc... sigh)  2mins into it, I had to interrupt him with "are you going to drop a bomb or is this somehow leading into good news? I'm very confused."  He seemed surprised by my confusion 🥴 and said "I'm giving you a good news!"

    So, they (the docs on tumor board) looked at my scans together and the main radiologist (who wasn't the reviewer for my scans) said they (the things/junk/whatever) have been there a while and although they light up, apparently they don't light up like neon signs (my words) including the one(or ones? I can't remember) on the lymph node(s?) on my right armpit.  So the radiologist suggested that rather than putting me through an invasive biopsy, let's watch and they all agreed.  My med onc added "so you're not out of the woods yet, but this is good news, you should be smiling" (well, I was crying at this point from such a relief) So I'm back to 3-month scan schedule (was on 6-months schedule until this drama, but I'm not complaining).  So I'm back to "hey, let's try to live my life" and I'm grateful for it.

    Thank you for all your support with every one of my sad moment and happy moment 🥰

    MB

  14. Hi Deb,

    I don't have any trial experience although I was treated at a "Comprehensive Cancer Center", so I don't have any insights to share, but mostly here to send my virtual support 😁🙏🤞  I honestly don't know if I would have participated in a trial even if it was offered to me - one of the main reasons is the fact that *I* don't get to control which group I'd get to be in.  By not participating in any trial, I get to decide what/how my treatment would look like.

    If I were in your shoes, I'd ask (if you haven't) everyone on my medical team - med onc, rad onc, pulmonologist, ... on what each of them think pros/cons of being on a trial like this would be (even if you've done more than enough research on your own...)... hopefully that'll help you decide.  No matter which way you decide to go, you'll have my and other folks full support 😊

    Sending warm thoughts,

    MB

  15. Hi there,

    Sorry to hear you're going through so much.  I'm not a doctor BUT during my consultation with the thoracic surgeon, he told me although the pneumonectomy (the complete removal of an entire lung, ie. all 3 lobes of the right lung in my case) is the best option in my case, it wouldn't even be an option at all if I was heavy or a smoker (or 80 years old) - just as a reference point, my pneumonectomy surgery was 6+ hours.  From what I understand, BMI is a major factor in deciding the safety of general anesthesia. 

    Since it sounds like you have a pulmonologist in your team, I'd ask them for their opinion as well as your medical oncologist who specializes in breast cancer.

    Let us know how we can support you along the way.

    Warm thoughts,

    MB

  16. Hi Trish,

    I had a needle biopsy (by an interventional radiologist) - it was an outpatient procedure.  I had about an inch incision right under my breast (he didn't put any stitch, just a bandage, I think).  I was under general anesthesia and when I came back around, it didn't hurt much, but when they told me to watch for symptoms of collapsed lung, it freaked me out and I barely slept that night.

    Sending warm thoughts,

    MB

  17. Deb,

    Virtual, germ-free hug first...  I'm getting a PET next Monday to confirm a "very concerning" findings on my 6 month CT scan - I hope I won't have to wait long for the result either cuz waiting sucks.

    I totally get your "I can't even think about treatment options at this point." as that's how I feel at the moment.  I've decided I can only handle one day at a time as it's once again too dang overwhelming.  On that note, my unsolicited thought would be... I'd want to know exactly what it is I'm dealing with and I'm thinking that's why docs want to know as well so they can come up with treatment options.

    another hug...

    MB

  18. Urgh, nothing like waking yourself up from a nightmare where you're dying and saying the final good byes to everyone, then realize the reality is rather gloomy and the stupid water works restarting at 5am is... just so... urgh.

    @Tom Galli - Tom, thank you as always.  You're the only one with one lung that I know of.  You're the one who's been there for me from my very first posting.  Throughout my first go around (the surgery, the radiation, and the whole ick), when the things got bad, I reminded myself of your "If I can live, so can you".  I appreciate your wisdom and encouragement so much, I don't even know what to say.  Thank you.

    @Rower Michelle - Michelle, thank you for being my cheerleader although you're NOT allowed to throw my own words (yes, I did say the umbrella bits) back at me (LOLOLOL).  I'll definitely ask about covid. Thank you for lending me your fight song - I, too, thought it was a song made for Jeep commercial.  I cried the whole time listening to the song... sigh.

    Dawned on me last night that no, this doesn't suck as bad as my initial diagnosis.  Cuz after my diagnosis on 12/20, I spent Christmas feeling utterly alone and lonely (that was the one of the very few times I'd ever felt lonely) - I didn't know about this forum back then and I literally had no one.  Now I have you guys, my cancer mentor in Chicago and a few friends here.  So thank you for the support...

    MB

  19. Hey everyone,

    well, I had my appointment with rad onc (who orders & reviews the scan result) was 2 hours after the scan and he's never been "running late".  The appointment with him was virtual, so I logged in 40min before the appointment (cuz. anxious. need I say more?) and started to wait.... then 10 min before the appointment his office called me to say "he's running late" - so of course I argued and found out he's waiting for the report (he never did before, rather just told me what HE saw on the scan).  Uh oh.

    About an hour after the appointment time, he called me.  Turned out he was concerned over what he saw so he wanted to wait til the report came out AND also talk to the radiologist first.  He said they're "very, very concerned that the cancer came back" (his words).  I blurted out, "but I only have one lung left". Sigh.  "The presentation is odd" although he's seen it before, there is a chance (although he didn't sound confident) that it's "just junk", so he wants to do a PET scan... so now I hope and pray NOTHING lights up and let all be "just junk"....

    Just like that, dang water works started again. Dang it.

    MB

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