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Everything posted by MBinOregon

  1. So as a fellow ROS1, Stage 3B person (btw, ROS1 is very rare, I've been told it's a mutation usually found in non-smoker, "young-ish" females. "young-ish" = under 70, LOL), here are some sites (no doom and gloom, just info) if you feel like learning about what this mutation is about: The ROS1ders An Overview of ROS1 Positive Lung Cancer btw, my 2nd med onc also said, regarding the targeted therapy, "it's only approved for Stage 4, you'll just have to do chemo!". A long story short, 3-4 wks later, my 3rd med onc said, as soon as he walked into the first appointment, "you have ROS1, why aren't you on Crizotinib?" So even within the same hospital system, the opinions differ like that, so it's highly critical that you go with the med onc (I consider the medical oncologist/hematologist the quarterback for my team surrounded by radiation oncologist, thoracic surgeon, etc) that your gut is comfortable with. And yes, ROS1 would mean your targeted therapy would be Crizotinib, aka Xalkori by Pfizer. The list of potential side effects of this drug is rather EEEEEEK! but everyone's body responds differently (I had blurred vision in the morning and developed a gastritis at a WTF level that I still cringe at a sight of an orange, but that was about it and I was on it for 2 years), so I'll keep my fingers crossed that you'll do well on that one as well. MB
  2. K, I'm glad you're going for second opinion before starting the treatment. Here's my 2 cents - IF you have a mutation that has available targeted therapies out there, there is no reason that you should start with chemo/rad first. Your first line of treatment should be the targeted therapy. In addition, depending on your insurance, they may deny to pay for the targeted therapy (mine was about $20k/month) once you start with chemo first. Keep us posted. You can do this! MB
  3. Tom, seriously... YIKES😲 I know nothing about what you can do with a hematoma, so asked Dr Google: ---------------------- Can I care for a hematoma myself? Rest. Ice (Apply the ice or cold pack for 20 minutes at a time, 4 to 8 times a day.) Compress (Compression can be achieved by using elastic bandages.) Elevate (Elevation of the injured area above the level of the heart is recommended.) ---------------------- So the basic "RICE" approach. I don't know how you'd elevate the belly (doing a hand stand would accomplish that, but that's what I call "an acquired taste"), but since you've tried heat, also try ice? 🀞 MB
  4. Connor, NOT that a diagnosis of LC is anything to cheer about, but this diagnosis of Thymic Carcinoma is daunting indeed. What I CAN tell you is when I was diagnosed, they (various oncology nurses and docs) told me "but you're so young and healthy" (kinda funny even now since I was 44 then and didn't think I was "young"), so I'd like to say the same thing to you. But you're so young and healthy, Connor. You can do this. I imagine given how rare it is, there may not be an online forum like this, so please feel free to hang out with us. We may not know thymic carcinoma like we know lung cancer, but we're very good at supporting each other or if you ever just need to vent out loud, we all do that too. From a former Burnaby, BC resident in the 90's πŸ˜‰ MB
  5. @Lisa Haines @LouT I don't know how I started getting the magazine (it was a magic! πŸ˜†), but I looked in there to see if there's any "if you want to subscribe..." but there isn't. BUT I do see their email addy- [email protected] so maybe send them your address and ask? MB
  6. So I checked my mailbox yesterday and saw Lungevity uh, magazine? sitting there (don't know why I started getting these - it's the 2nd one I received). Flipping through and glancing at the content... and this caught my eyes! I read it through and yup, as always, very well said, Mr Galli, good on you! (I said that with a virtual pat on the shoulder, obviously) πŸ˜πŸ‘
  7. Hey Everyone, So Fed gov't apparently passed a new law where healthcare providers now must share the test results with the patient at the same time they send it to the ordering physician. MyChart (online patient portal) had this link - I haven't read it cuz all matters to me is now I get the result even faster. According to the little blurb on MyChart, this law went into effect on 10/25/20 and I've gotten all (CT, PET, blood work, but NOT mammo, hmmm) super fast. The CT tech said the doc *could* block it, though, so there's that... MB
  8. well, is it a good timing or bad timing that I read this thread while munching on a GIGANTIC Cumbl cookie (dark chocolate with "molten lava" inside and yes it was warm) that my coworker had just dropped off just because I was mopey over a bad scan and she thought I could use a cookie. Life is fascinating, I think, whenever I get "All by myself, don't wanna be..." I get a random(?) unexpected hand reaching out. Either way, @SamGirl50, I totally agree with LexieCat. All my 4 med oncs have said the same thing about diet/nutrition - eat healthy and if you want to eat a cookie, eat a cookie! So I'm eating a giant cookie cuz I never do anything half way πŸ˜‚ warm thoughts, MB
  9. 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
  10. 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
  11. 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. πŸ™ MB
  12. 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
  13. 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 πŸ€—). 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 πŸ€“ 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 πŸ˜’ Thank you for all the kind words. Keep us posted, have fun with your online classes. Sending warm thoughts, MB
  14. ok, THAT is a major bummer. "compassionate care" my hiney πŸ˜’ (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.πŸ‘ sending warm thoughts, MB
  15. 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
  16. 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
  17. Tom, I thought you actually ventured OUT, like to the world! But it was to your front yard - that got me laughing and congrats! πŸ˜‚ 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
  18. 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
  19. 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
  20. 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
  21. @Susan Cornett @Tom Galli I just came across this post. This is good and bad news to me (sigh) - good that I'm not the only one (I have 24/7 pain - at the minimum "awareness", but mostly ranges from annoyance to pain everyday... although my surgery was only 2 years ago). Bad that this probably won't go away. Oy. Thanks for sharing. MB
  22. Hi Ronu, Sorry to hear your husband's diagnosis. So a couple of FYI (if you know/get familiar with some terms, it'll be easier to navigate, not only this site, but the cancer journey itself) - NSCLC = non small cell lung cancer. Tagrisso is the targeted therapy for EGFR folks. My mutation is not EFGR, but if you go to the sub forum for EFGR within this site (here), you'll see lots of discussions on Tagrisso. Whether you post there or here, we'll find it, but might be helpful read on that thread. I'm sure EFGR folks will chime in soon πŸ˜‰ MB
  23. Hi JCM, ditto to what Susan said. My 5.5 weeks of radiation wrapped up July 2018 and my throat felt like several whole peaches (not just peach pits, that is) got stuck in my throat. It did get better weeks after the end of radiation. When I saw my radiation onc yesterday after my 6 month scan, he did ask me if I have any trouble swallowing. Turned out about a year after would be when any long term damage from radiation treatment is assessed/addressed. He did mention if I did have trouble, they can "go in and open it up". I wouldn't say I'm 100% like pre-radiation, but it doesn't bother me to a point I really had to think about it before answering that question. Everyone's body reacts differently to treatments and recovers differently. As Susan suggested, if I were you, I'd definitely mention to the rad onc. If you can email the rad onc team, I'd say do so (when I have questions on weekend/holiday and it's not urgent, that's how I ask questions. His nurse checks the emails and relays the questions/answers OR the doc himself calls me with the answers). Hopefully it helps a bit. Good luck to you and take care. MB
  24. Hi BarbLu, Welcome. Happy to hear they caught it so early! I also am a never smoker and surprise! turned out anyone with lungs is at risk for lung cancer (who knew, right? I didn't). Although I stopped taking any pain killer 3 week post surgery (they removed my entire right lung) cuz I'm stubborn as a bull and a little (a lot) nuts 😜, everyone's body recovers differently, so, I'd say be patient and kind to yourself as you recuperate from the surgery. Before you know it, you'll get there! Let us know if any questions... lots of folks here with years of experiences... MB
  25. Shawn, Welcome - when I did research upon my dignosis, OHSU is the only one ranked as "comprehensive" cancer center in Oregon by NIC. There are only 40 some cancer centers ranked as comprehensive (highest designation). OHSU has lung cancer specialist oncologists located in their waterfront building by the river (not up on the hill where the campus is) - https://www.ohsu.edu/knight-cancer-institute/lung-cancer Let us know if you need any other info or help. MB
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