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Everything posted by Opal

  1. Opal


    DFK- Thank you for sharing about your friend's dad 7 years NED. Always uplifting to hear good stuff and give us hope. Miracles happen every day too. Opal
  2. Barb, You can do it!! You're almost at the finish line. As for achy joints, #17 was about the time the joints started hurting, and getting pretty stiff. Right now I'm 2 months done and the stiff joints come and go, really nothing like they were...something to look forward to, so I attribute it to age and I need to exercise. Stay positive and Jersey strong. Opal
  3. Steff, Thank you for sharing your mother's story. It's not the typical doom and gloom. It is a story of HOPE. Great to read people ARE surviving LC these days. It does gives us HOPE!
  4. DFK.....Wonderful wonderful news! On NED! AND Congrats on nearing the infusion finish line. Welcome to the club. I think I read your post a few pages ago that you had no PDL nor mutation?? Same here. Well how about that! Nix all the writings that one must have PDL and a mutation for Durva. Just want to say your posts have been most informative and tremendously helpful. Reading quite a few, I said to myself, OMG that's me, sans the voice changes. Side effects, weight gain, beliefs, treatment and boring infusions all so so similar. Your posts were quite comforting for me, thank you! Sending you all good wishes and many prayers. Hugs, Opal.
  5. Thank you, Jersey ladies!! I had a few bumps in the road but today my labs were "pristine" so I'm praying scans will be too. I hope as days go by I'll loose a few pounds, get some sleep and get my energy back. Just saying (not complaining). Opal
  6. Mission accomplished. I completed #26 Durvalumab today. As for outcome, time will tell. Opal
  7. I 2nd that Barb! She is a great support and inspiration!!
  8. Kleo, great to hear from you! You still have that sense of humor. 😄 keep it going. I never got a Durva goodie bag either (just the rash, remember?) so don't feel too bad. I think Bob😎 got one because he started this forum. Ya think? Got you in my prayers every day Kleo. Take good care Opal
  9. I tried taking the pearls too. Did nothing for me and didn't notice any side effects.
  10. Bob, please keep us posted. Thanks for info on options.
  11. I 2nd DFK's message above. Bob, you're the leader of the Durva pack..... no Que Sera Sera this time. Instead believe in miracles! Think positive. Opal
  12. RonH, first off that is wonderful news on your MRI! A huge relief too, I'm sure. That not so good news may turn out to be not so bad so think positive. Sending prayers your way. To address a couple things- I do not get Cortisol tested either. I asked PA today and was told unless I was extremely dead tired with fatigue its not done. I do get TSH done prior to each infusion. Mine has been normal range. To confirm on catch up infusions, my Onc said Yes, I will get all 26 infusions, making up the ones missed. I have 5 more. Actually they are my "make ups". My side effects continue to be a rash. Only on inside of my wrists but getting more red blotches, no itch, just not pretty. As Eagle13 would say, never underestimate the power of prayer.
  13. Ron, thanks for your feedback. It is good knowing you are at 17 durva treatments with no eye issues. I'm only a few ahead of you and hope I can hold out on fixing the cataracts. Also, thank you for posting the info on flu shots. I would never have given thought to getting a flu shot the same day as immuno treatment had I not broken out in a nasty, red all over rash. It was different then the "side effect" rash I have now. Hopefully posting these links will help someone else.
  14. Charles, thanks for your reply and info. I did see opthamologist about a month ago. He confirmed the cataracts and said I can wait if not so bothersome. I told him I'm getting Durva and while he's familiar with immuno not Durva specifically, he said likely since I had cataracts prior to starting his thoughts are its age related. I'm sorry you had some harsh side effects. Hang in there! Bob, thanks for article and link! I played Dr Google but didnt come up with much. Its a good article and probably if I did not just recently have a thorough eye exam and the Opthomologist tell me my eyes are healthy except for cataracts, I would be worrying and losing sleep. Definitely something else to keep in mind.
  15. Oh Thank You! Absolutely, you did mention this. I do remember now. And I definitely am holding off for flu shot until finished with infusion just to be sure.
  16. Good morning all! I would appreciate your opinion or feedback if you have had experience with this. Some here have noted eye or vision changes but not specifically cataracts. Are cataracts a side effect of Durva? I didn't think so and my medical team said no. I have had slight cataracts before immuno but in recent months seems they are progressing and becomming more annoying. Ok I know they sometimes come with age😊but I'll take all the years I can get! I'm waiting and trying to hold off few more months until finished the total infusion treatment. Both my Onc and eye doc said doing now should not pose a problem. However, I'm leaning towards waiting because without realizing it, I got a flu shot and my 2nd or 3rd immuno infusion the same day many months ago, and also broke out with a total body rash that caused me to stop treatment and start heavy duty steriods. Would appreciate your input or experience. Also, curious do you get a flu shot during treatment?
  17. Ron, I'm on almost identical treatment plan except I only see the Onc after the scans. Otherwise its a nurse practioner. They check 02 with vitals each time with a finger thing, then before and after infusion. I'm expected to get 26 vs 24 infusions. Blood work is done each visit, also tsh for thyroid.
  18. Donna G, thank you for posting your story. Everyones story or journey is as different as the disease, but to hear a survivor story, and a great one at that, is so so encouraging and provides hope. (So much better then reading statistics on lung cancer reoccurrence). Thank you so much for sharing. (so sorry about your husband) A very HAPPY 72nd BIRTHDAY to you,🎂
  19. I think that is 22,000 views!!! So then please keep us posted on that interesting part. Yeah, for the dogs too! Got to love 'em.
  20. Bob😎, it is coming up on the one year anniversary in a few days, of YOU starting this forum. I just want to say THANK YOU!! You have shared so much and been an inspiration. I'm counting down infusions not far behind you I pray. Time sure has flown by. Thanks to all posting and connecting here.
  21. I have worst time navigating in this site. Says I have messages where do I find them. Is there any place to find this info and how to use the site.
  22. For nausea I used "Coke" syrup, as in Coca cola. Just sipped it and it helped with nausea for me. As for steroids, they kept me up most of night, made me eat in middle of the night and turned up my tears so I creid at everything and nothing! Whew!
  23. Bob, what kind of dog breed is yours. Just curious.
  24. Hey Bob, thanks for your reply and good to hear from you! Only 3 to go!! Thats terrific. Yes, Que Sera Sera. I do sing that tune often. I'll have you in my thoughts and prayers. I look to hearing from you and updates. You're sort of the leader here for me being so close behind you in number of treatments. 😎 Please keep me posted.
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