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Everything posted by hillham

  1. Thanks Sally, Funny, it's now four days past my last chemo and I'm feeling pretty good physically. I've been looking so forward to feeling good, but now it's the mental part messing with me - feeling so stressed about my first scans in two weeks, and then depressed about the uncertainty of everything, including the side effects of the TKI. But doing my best, like all of you!
  2. I thought I'd give a little update about my esophagitis. It turns out that the pain I experienced above lasted about 7 days. Miraculously, only three to four days after completing my radiation I could swallow again, and didn't need any of the above medications except for the antacid! I was so surprised and happy about that. Since then, I've had my fourth and last chemo, which was on Friday 7/16, and today am feeling OK-- just a little queasy. Now I'll have a scan on 8/4, and the next decision is whether to begin taking entrectinib for my Ros-1 mutation immediately after. I am quite sure that I'll do this, but some oncologists (and Ros-1 specialists) seem to prefer to not use the targeted therapy in Stage 3 patients after initial treatment, as there isn't much data that it helps. I'm finding that there aren't many people like me. I'm pretty terrified of the side effects from the TKI, but more terrified of the cancer!
  3. It does sound like I'm eating a lot of food when I look at my list! Thanks Judy, that's encouraging!
  4. I was hoping that this long weekend and break from radiation would give me some reprieve, but OUCH. This is what I've been taking: 1-2 oxycodone every 5-6 hours for pain. magic mouthwash just before I hurry and swallow food (most of the time I do this, but sometimes there isn't as much pain as at other times for reasons I don't understand) pantoprazole every morning for acid folic acid stool softeners (because of the oxy) carafate 3-4x a day to coat the throat. fluconozole for thrush - 1 per day for ten days Here is what I've been eating & drinking ensure spoonfulls of olive oil watermelon, watermelon and more watermelon! (this goes down the easiest of all!) pureed lentil soup with soft bread bland egg salad smoothies with flaxseed oil, mango & bananas, cut with either milk or oat milk 10 glasses of water every day (at least that's the goal) Not sure if I wrote that out just for myself or if anyone would be interested in seeing it. I still have to go for three more radiation treatments, but then maybe the end will be in sight! Good luck to all of us! KH
  5. Melted ice cream sounds excellent! Here's the update after meeting with the doctor today. The first thing is that I have thrush in my mouth (ick) which he said is probably also in the esophagus and could be causing extra pain. He checked my tongue for it almost as an afterthought, and I'm so glad he did. I had noticed that my mouth felt yucky, but my response was to just constantly brush my teeth. I never really looked closely at my mouth. Now I can easily see that I have it. I'm taking a pill for it for the next ten days. The second thing is that I finally got the magic mouthwash. I had low hopes for it, but it was indeed magic. I was able to down an ensure and eat a bowl of mashed potatoes like they were nothing. Yay. I'm feeling more hopeful that I can weather this now. THREE more radiation appointments.
  6. Thanks for your responses. I meet with the doctor today to discuss. It's ironic because I happen to currently be reading Empire of Pain, a tell all about the Sackler family and Oxycontin! It's a real page turner. Such a bummer because I was feeling so good, and was looking forward to going out for runs and enjoying two healthy weeks before my last chemo on July 16th. Now I'm in misery. I'm using the caliphate, which I drink straight before eating. I'm also taking pantoprozole for the acid in the mornings. And 5mg of oxycodone is clearly not working for me! A new pain even popped up in my ear. Not sure if that's related to the esophagitis or to the chemo. The one thing I'm focused on is staying hydrated per Judy's advice. Water isn't the most painful thing.
  7. Whoa! So I only have FOUR more radiation appointments out of 30, and I was getting cocky that I was going to sail through this part of treatment mostly pain free. However, beginning yesterday it really kicked in. I don't even know how to describe it. I can carefully sip water, and I can swallow my own saliva, but if I try to get anything else down, not only does it hurt my throat while I'm swallowing, but my middle back goes into absolute spasms of pain, and I'm left hunched over trying to trying to steel myself. The carafate doesn't help with this now. The doctor gave me oxycodone, 5mg. Fingers are crossed that it will help, but after 30 minutes I still can't swallow! I am really taken aback by this, even though I was warned about it over and over again. Respect for all of you who've been through this! K
  8. 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.
  9. 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.
  10. 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
  11. 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
  12. 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.
  13. 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...
  14. 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!
  15. 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.
  16. 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.
  17. 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!
  18. 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
  19. 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.
  20. 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!
  21. That made me laugh out loud. Thanks for that!
  22. Thanks Jesse, exercise is a big part of my life too. Yesterday I ran five miles. At the end of the run, my oncologist actually called. I asked if I'd be able to exercise during treatment. The doc said, "Of course, you can do anything you feel up to doing!" While that made me feel happy, I do realize that's a pretty safe way of telling me that I might not feel up to doing much! I hope you are starting to "perk up" more and more!
  23. Thanks so much for those words Michelle!
  24. Thanks Lou! I just had a meet with a doctor at Sloan Kettering. It seems that they, Columbia and NYU Langone all agree that I should start with the chemo (4x every 3 weeks) and the radiation (6 weeks), followed by the targeted therapy for the ROS-1 mutation after that is all over. We are going to start it at NYU Langone. I'm learning a lot and steeling myself for a hard road. It's been an emotional few days (weeks?) but now that a plan is in place, I'm feeling a bit steadier. I ran five miles yesterday just to prove that my body still works. It felt great. Planning session for the radiation is scheduled for Wednesday, May 12th. Wish me luck, as I wish the same to you all!
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