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  1. Today
  2. Murphette214

    Newly diagnosed

    Thanks everyone! New update. My Oncologist really wants to do another cycle of chemo before starting radiation. She's hopeful that will help arrest the spread of the cancer from my neck to my knees. So, the current plan is that I will do chemo this morning at 8 am as was originally scheduled. I will then go for a radiation consult this afternoon. In 7 to 10 days after chemo, they want to do a series of radiation on my lower spine first to alleviate the pain there as it is the major source of breakthrough pain. They believe that should only take a few radiation treatments to accomplish. They will then move on to radiating rhe spots in my brain. They'll do new scans to check on how this is working before determining what course(s) of action to take next. Thanks all for your support!
  3. LexieCat

    Are you a concert goer?

    I'm lucky enough to live where there are a ton of concert venues. I go to the big arenas in Philadelphia, and Camden, sometimes to Madison Square Garden or Radio City in NY, and the arena in DC, as well as a few clubs in Philadelphia and the Stone Pony in Asbury Park (where Springsteen got his start). I get email alerts from Ticketmaster and Live Nation, plus some of the clubs, and just mark my calendar for when the tickets go on sale. There are some bands I will see every chance I get, while others I enjoyed seeing once but found they didn't blow me away enough to go see again. I'm actually flying to Chicago in early December to see VNV Nation, who I saw a few years ago and have been waiting to see again--they've mostly been touring in Europe. They are playing in Philadelphia, but in November when I will be out of the country. I had some rewards miles so the trip isn't costing much, and it's an excuse to make a short visit to Chicago. I've got a couple of work friends, too, that I go to concerts with all over the country. One friend is in Minneapolis and the other is in DC, so we take turns going to concerts all three places. We also went together to see The Who in Denver a couple years ago.
  4. BridgetO

    Are you a concert goer?

    Wow, LexiCat, how did you manage to get tickets to all of those? One thing I really regret is never seeing Tom Petty. I also didn't say that I enjoy classical music too. I have season tickets to the Oregon Symphony, which has in recent years become very good. Bridget O
  5. Yesterday
  6. Tom Galli

    Are you a concert goer?

    Steff, I’m a big music fan. I studied to be a concert pianist in my younger days and grew to love classical music. I’ve attended frequent classical concerts with the Philadelphia Orchestra, the New York Philharmonic, the Detroit and Dallas Symphony Orchestras (uniquely both called DSO, and the Chicago Symphony. I also enjoy jazz performances and have seen Miles Davis, Mike Pass, Ramsey Lewis and many more jazz trios and quartets. Also am a big fan of Brazilian Bossa Nova and saw Antonio Carlos Jobim in concert. Herby Mann’s band backed Jobim and it was a memorable show. It was outside in the concert venue at Fairmount Park in Philly. I now listen to a lot of Stacey Kent who excels in performing 30s and 40s standards. YouTube her Shall We Dance cover as an example. Sophie Milman’s Agua De Beber is a fusion of Bossa and rock that I enjoy. I’m trying to fine these ladies in concert without success. My taste in rock favors complex bands like Chicago and Blood Sweat and Tears. But I really like Billy Joel especially in smaller club venues. In my younger days, I followed The Band and was a fan of Leon Helm, the talented drummer and vocalist. YouTube The Band The Weight for a sample of his talent. Of course, the Beatles rocked my world. Sergeant Peppers Loanly Hearts Club Band album is my absolute favorite. I enjoy current jazz vocalists and bands covering Beatles hits these days. YouTube Blackbird, Oh Darling, and Fixing A Hole by Connie Evenston as examples of great Beatles covers. And Steff, I’ve been to the Gorge for a concert. The Eagles performed and a special extended version of Hotel California was superb. It had to be 15 minutes long! Great topic! Tom
  7. My scans show mild emphysema, as well--probably attributable to my years of smoking. But even with that, it didn't really faze me. Chances are, if you passed the lung function test, you won't have any problems. That's why they do it. If you were likely to have breathing problems, they might remove less of the lung or use cyberknife (radiation) or something instead. But those are considered "next best" to surgery in terms of removing/curing the cancer.
  8. Well they did say I showed signs of emphysema and COPD. But I did have the pulmonary test already so I must've passed. LOL Thank you for the info LexieCat!
  9. Here's an article about lung cancer surgery--note that surgery provides the best chance for a complete cure of lung cancer: https://www.cancer.org/cancer/non-small-cell-lung-cancer/treating/surgery.html
  10. Hey, Kleo, Don't worry about the "half the lung" thing. With some illnesses you want to avoid surgery if possible--lung cancer is one where the surgery is considered the gold standard for early stage lung cancer. If you can remove it, remove it. Yes, cancer can return and spread, but that's true no matter what you do. Your chances are significantly better with the lobectomy. And if you don't currently have breathing issues (COPD or something), then you are unlikely to experience ANY breathing-related problems as a result of surgery. In fact, my breathing actually improved after doing the breathing exercises and starting to take daily walks right after. My surgeon had one patient who was able to run a half marathon less than six weeks after lobectomy. (I can't run around the block, but that was true all my life.)
  11. Well my surgeon does do the VATS and said that is what he'd be doing. He did say he wants that lymphnode biopsied again. If it isn't cancerous then he will do the lobectomy but if it is then I continue with the radiation/chemo treatment. He said he doesn't cut the actual tumor he'd just remove the entire lobe. So that made me feel a little more comfortable about it. There is another lymphnode involved however but it biopsied negative for cancer so they don't seem to be worried about it...just the one by the esophogus. That one little guy sure is a troublemaker! I'm just still on the fence about removing half a lung though! I can go through all that and still it could very well return or spread. It can do that without surgery too but at least then I won't have lost half a lung. But I do really want that lymphnode removed! Geez I just don't know.
  12. LexieCat

    Are you a concert goer?

    I couldn't even begin to list the concerts I've gone to in the past few years, since I retired and now have a salary on top of my pension. My favorite live performers are: Green Day, Foo Fighters, Radiohead, Pixies, Dandy Warhols (from Portland, Bridget!). And the late, great Tom Petty. This summer I have tickets for Arcade Fire, Cake, Elton John, Eric Clapton, Foo Fighters, Gladys Knight, John Fogerty/ZZ Top, Pixies, Smashing Pumpkins, Sting/Shaggy, and VNV Nation. Oh, and the Game of Thrones Concert Experience. So far. I've gotten hooked on Broadway, too, and just bought tickets (for a YEAR from now) for Harry Potter and the Cursed Child. Went to Angels in America last month, will be seeing Hamilton for the second time on my birthday in August, and I've got a subscription for the Broadway season in Philadelphia for the coming year. ETA: I forgot that I also have Radiohead and Jethro Tull in my lineup for this year! 'tis an embarrassment of riches.
  13. BridgetO

    Are you a concert goer?

    It's hard to get tickets when big name performers come to the big venue in Portland. Stuff sells out immediately and a lot of it goes to "resellers", AKA scalpers, who charge exhorbitant prices. Sometimes I've gone to concerts of not-quite-as-big-name, or formerly big-name performers at slighly smaller venues. Most recently, I saw k d lang who reprised her "Ingenue" album on it's 25th anniversary. She was great! I got a ticket to see Donald Fagan (of Steely Dan, one of my favorite of vintage bands) but the concert was cancelled, because it was right after Walter Becker (the other half of Steely Dan) died. A few years ago I went to see Leon Russell here. In the 70's I was a BIG, really BIG, Leon Russell fan. I had seen him live about 1970 and was really impressed by his energy and charisma as well as his singing and songwriting. The concert I went to here was a bit of a disappointment. His voice was faded and his energy was gone. Oh, well, what should I have expected-- he was over 70. I'm glad I did get to see him again before he died in 2016. A pleasant surprise, though, was the opening act for that concert, Commander Cody (George Frayne) formerly of Commander Cody and His Lost Planet Airmen. This was a band I used to see at local shows when I lived in Berkeley in the late 60s and early 70s. Never the same quality as Leon, though, and I wasn't a really BIG fan. At the Portland concert Commander Cody (also around 70) had the same kind of energy and voice he always had! Some of us old folks hold up pretty well!
  14. Steff

    Are you a concert goer?

    Hi all, It seems that "fun" Steffanie has been on a hiatus for quite some time. I'm not sure why, but I'm trying to find out where she's gone and get her to come back! In search of "fun" Steffanie, I will be looking to my fellow Parrotheads at Saturday's Jimmy Buffett concert in Seattle. We've been blessed in that he has come to the PNW twice in 2 years!!! My passion is concerts. I have lived only 45 minutes away from one of the most beautiful looking and sounding concert venues in the United States - the Gorge Amphitheater in George, Washington. So concerts were an easy thing to attend. My first concert was the Pointer Sisters when I was about 7 years old...that was a blast! My mom has always been my concert pal and having a lung cancer diagnosis has not stopped her. In fact, it has made it better...we now get seats in the section for disabled folks, which is much more spacious and we don't have drunks spilling beer on us!! My concerts have gone from boy bands when I was a teenager to singer/songwriters like James Taylor, Tom Petty, John Mellencamp, Billy Joel, Elton John, etc. But Jimmy Buffett remains my main man and his concerts are always a treat. There's just something about those of us who have to dress professionally during the day, but slip into hawaiian shirts, flip flops, and the occasional coconut bra when Jimmy comes to town! We are just a big, dysfunctional family who would all be crazy if we weren't all insane! (that's from on of Jimmy's songs if you happen to not be a fan) So my question to you is, do you like music, whose your favorite? Do you/have you gone to any cool concerts? I would love to hear about them! I will hopefully have a fun pic from this weekend's concert to share when I get home...have a great weekend!!! Steff
  15. BridgetO

    Post-chemo side effects

    Interesting article, Tomm. Looks like CBD works on mice. I wonder if any studies have been done on people. I wonder what the appropriate dose would be. If I ever have to have taxol/taxoterre again, I' m going to consult with my naturopath about using CBD. From all reports, it sounds like CBD is a pretty benign drug. I had taxoterre (close relative of taxol) as part of my treatment for a non-lung cancer. I was fearful of taxol because my mother became physically disabled by motor neuopathy from taxol, to the extent that she could no longer walk, nor even support her own weight for transfers to/from a wheelchair. Motor neuropathy is a less common form of neuropathy that doesn't cause pain, but does cause loss of motor function. I read that there was some evidence that the propensity to have neuropathy from taxanes could be inherited. So when taxol was recommended for me, I was hesitant and the oncologist suggested taxoterre instead, since the action is similar and it's somewhat less likely to cause neuropathy. Still, after the first infusion I began having neuropathy in my feet. Fortunately, I only needed 3 rounds The neuropathy was unpleasant but tolerable. It was all the typical kind, not motor. I don't know whether I would have been able to tolerate many more rounds. So I'm storing up info on taxanes and neuropathy, just in case. I'm hopeful that I won't need chemo again. I'm NED on that cancer, 7 years out, as well as on breast cancer and my most recent cancer, lung. Both the breast and lung cancers were stage 1 and didn't need chemo.
  16. I agree with LexiCat that it's worth getting an opinion from a surgeon who does VATS. If you can have that, it generally has a shorter recovery time. Bridget O
  17. Kleo, My mom had follow up chemo and radiation after her lobectomy due to the surgeon being unable to remove a cancerous lymphnode that was unknown to be involved from initial testing. Radiation was concentrated next to the esophagus. She was told she would have a sore throat but only had a slight one (made better by some sort of prescription throat spray) toward the end of treatment. It was recommended to eat ice cream and popsicles as well. Ice cream tasted horrible to her, but we did find some fudge bars that helped soothe her throat too. The sore throat only lasted a couple of weeks and it was never bad enough to worry about it affecting her ability to swallow. Perhaps your sore throat (if any) will be very manageable too.
  18. I think it's definitely worth looking into. Find an experienced VATS surgeon and get an opinion whether you'd be an appropriate candidate. As I said, it can't be done in every case--sometimes the location of the tumor or other factor precludes it and the only option is the open surgery. But given the difference in recovery time and post-op pain, I think it's definitely worth investigating. And incidentally, robotic surgery is very similar to VATS--my own surgeon said they are essentially the same, it's just a matter of the surgeon's preferred technique (and the availability of operating equipment, training, etc.).
  19. Thank you all for the replies! I'm actually heading in to the surgeon today to discuss my options so it's good to have read your experiences. Susan....I'm about to do the carbo/taxol combo I guess combined with the radiation if we don't go the surgery route. It'll be weekly so I am concerned about maintaining my weight. And the dang persistent thrush....lol But I guess if I can manage to do it on cisplatin, this one shouldn't be as tough! I hope. They are telling me that radiation will get bad though about 3 weeks in due to the location of the lymphnode. It's by my esophogus so they say it will likely cause me some swallowing issues. Rats. Pretty sure this surgeon doesn't do the vats but I'll ask him about it today. But perhaps I could find one that does! Sounds like it'd be worth looking into at least.
  20. Tomm

    Post-chemo side effects

    Hi Susan, this link may be helpful to you ... it helped me. Cannabidiol inhibits paclitaxel-induced neuropathic pain through 5-HT1A receptors without diminishing nervous system function or chemotherapy efficacy https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3969077/
  21. Last week
  22. Hi All! Just finished up my 4 rounds of Cisplatin/Alimta chemo. Boy that Cisplatin is really no joke. Yeow! Still held my whopping 97 lb weight throughout! Even got up to 99 again before the last infusion! Go ME! Anyway first scan is in, and tumor has dropped from 5.6 cm to 3.87. SUV Max went from 16 to 4.14 (!) Lymphnode SUV dropped as well from 4.1 to 2.5. So we are going in the right direction at least! Next is a meeting with the surgeon who I'm told will want another biopsy of the lymphnode. He will want to make sure it is no longer cancerous before committing to surgery? This may be a dumb question but...if it's ACTIVE, why wouldn't it be cancerous? Also, the TUMOR is still active. Can you remove an active tumor safely but not a lymphnode?? I know....ask the surgeon this stuff....lol I just cringe at the idea of cutting live cancer. I know it's done alll the time but...freaks me out a little. ( Bad experience with my mom's surgery...lingers I guess) Anyway...they are tentatively scheduling me for the 6 week Taxol/Carbo/Radiation treatment ...pending the surgeons determination. Or if I say a definitive no to surgery. LOL *Tom....I read your blog about receiving this same treatment. I know it's considered "low-dose" chemo when given with radiation. Any idea how "low"? Was it half dose? Less? Ugghhh...if I get thrush for 6 straight weeks I'm gonna be extremely grouchy. Oncologist keeps telling me it won't bother me much. Heh.
  23. Murphette214

    Newly diagnosed

    Hi, I'm Murphette214. I was diagnosed with Stage IV adenocarcinima that has spread to all my lymph nodes, spine, bones stomach lining, abdomen, pelvis, and ovaries. I was diagnosed in May 22, 2018. This has, understandably, come as a shock to my husband and I as I have always been healthy. We've had very little time to absorb all the information thrown at us in a very short time. In addition to the day to day effects of the cancer itself. I'm told by the Oncologist that she has never seen a cancer this aggressive. Lucky me! I had my annual physical on April 20th and there was nothing to indicate any problems. In late April, I developed a small ache in my left buttock which I attributed to a muscle strain from yoga. Things quickly spiralled out of control over the next 4 weeks leading up to my diagnosis. How do you go from being a relatively healthy 53 year old woman to facing death in such a short time? I found this support group and thought I'd give it a try. Thank you.
  24. Earlier
  25. Susan Cornett

    Post-chemo side effects

    Hello, all! I had my first round of chemo in the spring of 2016 and finished my second round of chemo in July of 2017. Most side effects abated after some time. But over the last few days, my neuropathy has come roaring back. I have no idea what has brought it back. I don't have any other medical conditions that typically cause neuropathy (i.e. diabetes) but I have had the most stressful work week that I've had in almost 3 years. Don't know if stress contributes but it sure can't help. Has anyone else had side effects pop up long after treatment was completed?
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