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  2. Met with the Onc after having PET scan. It seems the mass I have in the right lung has almost doubled in size in two months. Even though it has been diagnosed as NSCLC, the onc says it is very fast growing and aggressive. Not sure anything will work for it, but want me to consider seeing Radiology and consider chemo. Says quality of life with treatment will probably not be very good. Quality of life is more important to me than cure, since that doesn’t seem like a possibility. Confused since I seem to have read that NSCLC is a slower growing cancer compared to small cell. I told onc that I have had more shortness of breath and wheezing on right since EBUS, he says it’s not caused by the EBUS but caused by the tumor. Kind of strange since I had no problems in Europe traipsing on foot all over the place and up a mountain to visit an old castle, only two weeks before EBUS was done. Let’s say he had an answer to counter all of my questions and they all seemed negative. I just don’t know what to think.
  3. Hi Tomm! Thank you for the kind words! I actually have the license I can have the cannabis oils. I just don't like em. Oil tastes like crap. And I accidentally took one that wasn't CBD. I took a THC one. Ended up trying to make myself a Steak-Umm but got distracted because I thought my mayo looked like butter. Spent half the day staring and comparing... trying to figure that one out. Duh.... I don't do well stoned apparently.🤣
  4. Today
  5. Hi Kelo, your positive attitude helped me make the decision to take Durvalumab. The posts you make offer all of us hope to keep taking what gets thrown at us and fight back with a forward attitude. I a few years ago when I was getting chem/radiation I also ate CBD/THC oil and killed 4 tumors with the combo. There is a lot of research and some clinical trials using CBD/THC for brain cancer. I did a google search and found a few links that offer hope. This link is from us gov. site https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5964193/ and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6200872/ a lot of articles from this search ..cannabis brain tumor drug hope CBD's Role in Beating Deadly Disease Uncovered in Blood-Brain Barrier Study https://www.inverse.com/article/55030-cbd-could-help-deliver-chemotherapy-drugs wishing you the best on your travels...
  6. Definitely ask about the full panel biomarker. What if you had the rare ROS-1?
  7. Kleo Anybody wanna come shave my head????? I already half bald anyway 🤣 Been there done that and it has grown back in my new style.😎
  8. Well they are starting me on Taxol, Carbo, Tecentriq, And Avastin. I mean...that's ALOT! they say chemo can't get to the brain supposedly because of the blood-brain barrier. And the immunos all work with PDL1...which I apparently don't even have. Soooo....am I taking all this just for fun or what!?? LOL Bob I'm soooo glad you are doing good on this durva! I think it just all depends on what markers ya got... or don't. 😉 Eagle...I can see the pathology report so I see where they actually tested for the genes...BRAF and EFGR and ALK and all that......but I still can't find the part about PDL1. Doc just TOLD me I don't have it...I haven't actually seen it. I'll ask tomorrow. Anybody wanna come shave my head????? I already half bald anyway 🤣
  9. rginsky1

    MO's Obituary

    I'm not sure if you will see this, but i just stumbled across this message board. you all have such kind words to say about my mom. Here we are 15 years later and i love that i can still find stuff from time to time about her on the internet. I remember her often talking about her message board friends and chat friends, how they helped her feel better when she was feeling sick and hopeless (which she hid very well). Thank you all for being so supportive to her and offering such kind words. Randa Ginsky
  10. I am sorry your surgery was so painful and didn't presents the results you deserved. I hope you can try some followup therapies that might help. Get your best care. Hugs
  11. Hi Kleo. I’m sorry to read that you have had to deal with this setback. But with your spunky determination you got this. My thoughts are with you. Stay tough
  12. Hi Laurel,After diagnosis and biopsy were done I was offered radiotherepy OR surgery and I picked surgery because 4 yrs prior to this I had 5 weeks of radiotherepy and follow up scans 3 monthly and 6 monthly for a separate cancer so I felt I'd had enough radiation so went with surgery thinking I just wanted the cancer cut away and that followed with chemo because traces of cancer had already escaped into 7 nodes so surgery was a very painful experience but was told I was at a cure stage but they were wrong unfortunately..
  13. Hi Kleo, I've been wondering what was up since we hadn't heard from you in a while. I'm glad you're back, but I wish is was with better news. You really were "kinda busy"! Whoo! Hang in there and keep posting when you can. We're all thinking about you and pulling for you. Bridget O
  14. Hi Diana- Just wanted to say hello and welcome. Curt has done a nice job of articulating how NSCLC can be quite sneaky. Mutations often happen when there is a recurrence (in addition to small cell it’s possible for someone with EGFR to mutate to ALK). The good news here is the surveillance picked this up in the limited stage. There’s been a lot of innovation in SCLC in just the last year. You’re in a great position to knock it out. Here in this forum, we live, love and laugh with each other. Keep us posted (and post wherever you want!) Michelle
  15. The best thing about turning 50 is you become absolutely fearless. Welcome to the 5th decade. Party on- keep traveling!
  16. Welcome Home Kleo! So glad to hear from you, however, sorry to learn about this update. You’ve been such an inspiration to me with steadfast spunk and determination. We’re all here for you. As Eagle says- prayer works. So here we go- a worldwide prayer from this circle of your family. Sending a big hug. Michelle
  17. Hi Diana. Sorry to hear about your recurrence. I don’t have any personal experiences but I have heard of NSCLC turning into SCLC. I can imagine your frustration with discovering it so close to the five year milestone. I’m sure it feels like the finish line was just moved on you. Treatments have improved considerably in the past 4.5 years. You’ve beat it once and you can do it again. Hang in there.
  18. Yesterday
  19. Hi Diana and welcme! Wherever you post is fine. I'm sorry to hear about your seconc LC diagnosis. I don't recall anyone on these forum having the sequence you have. Maybe somebody will jump in. Hang in there. Bridget O
  20. To all the dads on the forums.
  21. Kleo, Did they do the full biomarker tests? I think I would ask for another full test. It can be done with blood. https://www.ncbi.nlm.nih.gov/m/pubmed/29413057/ praying for the best 🦅
  22. Kleo I guess you were kind of busy with a little Craniotomy on the side and you were concerned about needle biopsy😀 .I have no idea about my specific markers bit late to find out now as i go for #22 on Wednesday this week and finish Durvalumab on August-14 then scan late August now the proof of the pudding is it working will come clear in the next six months. Did they say what type of chemo/immuno you will receive. ? There is always some type of setback in persons cancer treatment and as long as your getting treatment you will handle it. Bob
  23. Hi Durvalumabers! I have been extremely MIA. but I was kinda busy....LOL Well unfortunately, the Durva ended up NOT working for me. Found out I have NO specific markers... no PDL1...so it did nothing. Dang it. Started having really bad headaches...terrible. Went to ER and they found I was growing tumors in my head. Did a Craniotomy to get one of em...some more Radiation on the other stuff....and now I start yet another chemo/immuno on Tuesday. Blehhh…. ...on a positive note...my lung/chest cancer has cleared up nicely! 🤣 Hope everyone here is good!
  24. I didn't follow directions very well! I posted elsewhere and then saw that I was supposed to post here FIRST! I guess I was just anxious to jump right in! My name is Diana, I'm 58 and just began my second lung cancer journey. Though similar, this one is certainly different. My last trek was with non-small cell in my right lung and this time around it is small cell in my left lung. Unfortunately, I have had limited success in finding information in which an individual has had NSCLC and following a period with NED (4.5 years), is diagnosed with SCLC which is what brought me to this forum. LUNGevity has been my go-to resource for information since my first diagnosis in 2014, but I did not join any of the forums until now. I have always been an optimistic, upbeat type of person, but this latest discovery has made that a bit of a challenge for me! I was nearing the five-year mark and this slight change was discovered on a routine CT scan. I was unsure how much information to share initially, but wish to thank you all for welcoming me to your group!
  25. Last week
  26. Saw the Oncologist today for my moms bloodwork and results of yesterday’s pet scan. Pet scan shows main lung tumor has shrunk from 3.7 cm x 3.0 cm to 2.9 cm x 1.8 cm, complete resolution of right hilar lymphadenopathy and satellite lesions in right lower lobe have resolved anatomically & metabolically. Treatment is working! This is such good news. She has a renewed sense of optimism that will get her through her treatment next week and the side effects that follow. After that she’ll be on a maintenance dose of Tecentriq. We know it’s not a cure but it buys her more time, time she so desperately wanted. I don’t know what the future will bring but for today I will savor this victory against the beast.
  27. I wanted to drop by and say a quick hello to everyone. I haven't been on here much the last couple of months so I'm not as up-to-date on everyone as I would like to be. Work has kept me busier than I've been in years (no complaints) but it has cut into my time here. I try to read posts but don't always comment. Just know I'm thinking about all of you each day. I celebrated my 50th birthday last week - something that I wasn't sure would happen when I was first diagnosed. My friends and family came through on my Facebook fundraiser for Lungevity - over $600! Hoping to catch up more with everyone soon!
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