Jump to content


  • Posts

  • Joined

  • Last visited

Profile Information

  • City
    New York
  • US State (if applicable)
  • Province or district (if non-US)
    United States
  • Country
    United States
  • Gender
  • Status
    Lung cancer patient/survivor
  • Interests
    running, hiking, reading, traveling

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. Thanks so much Sally! I'm glad you are almost healed. What a thing to go through! I took the carafate yesterday for the first time. It seemed to work, which surprised me. It's a liquid, and I take two teaspoons full on an empty stomach. So far, I've only had one day with a lot of pain and it was after I ate lunch at a restaurant. That was when I kind of freaked out because I'd never felt anything like that before in my life. I called the doctor and he prescribed the carafate and the magic mouthwash (which I haven't tried yet) right away. I'm also taking a prescription antacid, which I think is helping. I'm hoping I can control some of it with diet. Tomorrow I'll be half way through my radiation treatment, which feels good, but I realize that things could get worse.
  2. Thanks Judy, I know you had a very hard time with esophagitis. Makes me hurt to think about your experience, but I'm so glad things cleared up. Your various posts have got me chanting PALLIATIVE CARE! So far, for me the worst is pain from reflux, at least I think that's what it is. A burning in my chest that comes and goes, especially after I've eaten. Ouch!!! I haven't tried the magic mouthwash yet, but the nurse told me to use it, even if swallowing isn't that bad because it has mylanta in it, which helps with the acid.
  3. I'm almost in the middle of radiation treatment (13 down 17 to go) and the esophagitis is beginning. Swallowing has become tricky, but the pain in my chest from reflux is worse. The doctor prescribed magic mouthwash and carafate. The carafate says to use 4x a day on an empty stomach. Can anyone who has experience with this medication offer advice? Does it work? Thanks! K
  4. This doesn't really answer your question, but my situation seems similar to yours. I was diagnosed with Stage 3 adenocarcinoma in April. There is a very tiny tumor in my lower right lung, and involvement in a few lymph nodes near the lung. Three hospitals told me they could not operate because of one lymph node that, like yours, is near my right collarbone. Biomarker results came back in about 8 days, and they found the Ros1 mutation. I started Chemo two weeks ago (Cisplatin and Pemetrexed) and I didn't feel sick for more than a day and a half. We'll see how round 2 goes this Friday, and then there will be two more rounds after that, three weeks apart. I also started radiation last week for the mini-tumor and lymph nodes, and I think my biggest challenge is probably going to be esophagitis. So far, I don't feel anything, but I'm trying to brace myself. The doctors seem to think I should go on one of the targeted drugs for Ros1 immediately after treatment - not sure which one. As far as immunotherapy goes, no one has said a word about it, even though my results came back PDL-100% Good luck with everything and keep us updated if you can. KH
  5. hillham


    This thread really picked me up today. I have a stage 3 diagnosis (April 26th) and began chemo last Friday. Yesterday was my lowest day, and I felt like I was dying, but like a miracle, I feel healthy today and am out on a walk! Thanks for the optimism everyone. I’ve never needed anything more.
  6. Thanks everyone! I've been in the infusion room for about three hours. Received fluids, steroids, a vitamin b-12 shot a 15 minute massage (quite a surprise), and now the Alimta. I do feel better getting started. I was told about the hearing issue, but I didn't think to get a baseline test. I'll look into that. As for the hair, I guess it's just going to be a wait and see...
  7. I am hoping this trial is a great thing for you! I feel like you've given me a lot of strength in the past few days because I can see what a strong person you are. Thank you and really hoping for positive outcomes!
  8. I got the tattoos. Maybe I should have been getting tattoos all my life because I really didn't feel anything! As I said before, I start cisplatin/pemextrexed on Friday and then the radiation will begin on May 25th. The esophagitis is a concern, of course. But I also wanted to ask if anyone had experience with these drugs and losing hair. Maybe I should post that question in a different section? The doctor told me it would "probably" fall out.
  9. Yes, I take it that way too. I understand that describing this as a "fight" can be problematic, and before I was diagnosed, I'd heard many cancer patients bring this up. For me, my "fight" is going to be with myself - an effort to try to stay positive and do things that I know will make me feel good. At least that is something I have some control over. Walking out in an hour to get my little tattoos. Wish me luck.
  10. That's all good advice Jesse. I take it you are not receiving radiation at the same time? I'm going out to buy all the things you suggested, and your words give me some encouragement. Thanks!
  11. Thanks Jesse, your words helped me a lot. Just got off the phone with the doctor. Friday will be my first day. I hope you are feeling OK! I'm happy for this forum! K
  12. Thanks for sharing MB! I read some of your story (I'm supposed to be working now!) and I'm so sorry for all you've been through, and your stories of arrogant doctors are really upsetting. I hope you're OK. Thanks for the links too. I'm trying to get into the Ros1ders Facebook group and have been reading a lot about the mutation. I went to three hospitals here in NYC and saw medical oncologists specializing in lung cancers. All said they would begin with chemo and radiation and then go to targeted therapy (Crizotnib). There was some discussion about going directly to the drug, but in the end they were all convinced that it was better to do it after, since there is the hope of the radiation/chemo being effective. I'm terrified of all of it right now, but trying to stay strong.
  13. Thanks Lou, That's very good advice, and I'll do it for sure. I've never been so nervous in my life, but I'm sure you all understand, and that does help! I'm going to be getting Cisplatin and Pemexetred four times, once every three weeks, with six weeks of daily radiation in-between. I really don't know what to expect!
  14. That made me laugh out loud. Thanks for that!
  • Create New...