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Everything posted by Opal

  1. Sillycat, you are in the home stretch now. Almost done. A piece of cake. Happy for you! Opal
  2. Note to Lindsay, and then PShsy... Warning, this is long, sorry. Lindsay I finished #26 infusion about 6 months ago. Here's my side effects story.. Keeping in mind I did NOT get double dose once a month. At my #2 infusion I also received a flu shot. About 2 weeks after that infusion I started to develop a rash. A minor side affect not too prevalent or talked about. My rash didn't itch, it was just red blotches which started on face and disappeared then showed up on my neck and chin, and disappeared did this small sections until it hit my ankles. Not pretty but not painful. Derma gave me every cream and ointment but nothing helped it. A couple Durvies sent me a link that apparently those administering never realized that one should not get Durva AND a flu shot same day or I was just sensitive. So along with this (Polly pleez note) an early scan showed slight pneumonitis. Thus Durva was held and I was on 70mg Prednisone and tapered down over I think the next 6 weeks. Steroids were awful. I cried, got cranky and wanted to eat but tried not to. Rash disappeared and so did pneumonitis. Back on Durva. Polly why are they taking you off? My main complaint, I could only sleep it seemed in 3 hour increments for the duration. Fatigue was terrible. I too gained the 30 pounds without really eating more, probably less then normal. It was all in my mid section. I continued on exhausted but managed. Scans showed shrinkage and good stuff. I didn't have PDL or a mutation. Testing showed no active "C". At 20 weeks I was noticing knee and joint pain which continued and lessened just recently. I get stiff now in joints at one position for long periods but chalk it up to a few years older. Not complaining. Last week I had my 3 month scans and all is well. Stable and labs great. My Onc seems to think I may be stretching scans to 6 month intervals after September's. I like that but then I don't. I managed 26 infusions and a separate lab poke for each visit without a port and no problem. I attribute that to some very good nurses. Well thru all this, I wondered if I'd get a head/brain scan ever again. I was told no symptoms, Stage 3 no scans needed. I still worried. Yesterday afternoon while sharing care giving for my Mom, I jumped up from a cat nap and tried to make a quick dash to my Mom except that my face had a quick meeting with the kitchen floor. I ended up in ER (oh I didn't want to go!) with 6 stitches, a broken tooth and a sprained pinky finger. Two inches I would have hit the soft carpet. There is a silver lining in this. Stitches in the eyebrow and all.....ER had to do a head scan. All is good. Clean and clear. I wish all you Durvies and caregivers courage, strength, faith and hope to keep going. Miracles do happen. Hugs to all, Opal
  3. Lindsay, I'm in the Done Durva Club but I understand the Durvies going to the Medical center I go to are now getting double dose like you since Covid. Have not really heard anything further tho. Good luck. Stay positive. Opal
  4. Barb, soon as I can take the beach chair, I'll head to the Jersey Shore and chill out there foe ya' and send you the vibes. Several are open for exercise, but I'm more laid back type😁😁 Opal
  5. Barb, CONGRATS and welcome to Done With Durva club. Go take that vacation, even if only in your mind. Ron, sounds good. An optimistic ONC can make all the difference. Maybe a blessing your first doc sent your for that second opinion. Hang in and stay positive. Opal
  6. I have been looking all over for one, none to be found. Not even on line. I contacted a medical supply store and they said good luck and chuckled, they can't even get them.
  7. Barb, way to go! One and done!! I know exactly how you're feeling about getting done. It is strange after so many appointments, treatments and scans...always something to keep it in check and now only scans every 3 months. Can be a little scary. It seems to always be in the back of my mind until I forget about it. Then I try to be normal, the old me again. I try and remind myself anxiety is not good for the immune system. It CAN make you sick. I don't agree with you on the rear ugly head part. That's not a given. Yes, we hear about reoccurrence but I also heard of survivors who had only one go round and are living long lives. I prefer to keep that in mind. So for now Jersey Girl, let it go and enjoy your new found freedom. Opal
  8. Ron, real sorry to hear you have to go thru all that but don't you dare give up!! I will be praying for you and that all the best medical professionals will be brought before you. Miracles do happen. Believe it. Take care. Think positive. Opal
  9. Tomm, CONGRATS! Welcome to the I'm done my Durva club. Barb will be coming around the corner very soon. Seems like just yesterday we were all embarking on this Durva journey one by one. With 😎 Bob the leader. Stay positive and stay well. Hey Tomm, the K9s are asking why humans are wearing muzzles..
  10. BC Joe, If I remember correctly that is what my Onc/Rad doc told me, there was slight shadow n could be scar . I don't know how they know. Im on way to get scan and meet with him now. If I find the answer I'll let you know. Finger, toes and eyes crossed for good results. Best wishes for continued Durva treatment. Opal
  11. This isn't the proper forum for my request, but am most familiar with my Durva buddies here. Can I ask, if I may for your prayers and good vibes please. My hubby is in treatment for this dreaded disease but his is PanCan stg 4. He was doing great for 3 years till recently. He's had pain and docs trying to get his meds right and get him stronger to do chemo again. . It's been a nightmare. I am thankful I've been strong as I have been to care for him. Thank you, Opal
  12. DFK, ecstatic to hear your great news! I'm scheduled for Ct this week. Hoping and praying for good news too. I need to ask why I don't get PET scans more often? So happy for you!!
  13. Opal


    Hi Polly, I can so well remember how much it hurt to swallow after the radiation. My discomfort started in the final 2 weeks of RAD and it felt like razor blades. I didn't learn of Manuka until later in the game so never tried it. I did try using the Magic Mouthwash, but really it gagged me and I would not say it was a big help for me. Crazy as it sounds, I got Equate or Walmart brand liquid cherry antacid, kept it in the fridge and would use it before eating. I did only eat soft foods for a short time. Even baby food now and then. Those Ramen noodle soups were tops on my list. Loaded with sodium but it was tasty and didn't hurt going down. As was jello and mashed potatoes, or sweet potatoes for that "other" problem. Also doc said drink milkshakes. No problem there. Oh is that why I gained all this weight. Not really, I didn't do that very long. My pain finally did subside and I was back to eating mostly everything. However, I did realize I had to take smaller bites and eat slower and chew a bit longer but I'm back to normal me. Good luck and remember this too will probably pass. Opal
  14. Opal


    Hi Polly, I'm sorry to say welcome so I will just tell you you are not alone. This April will be 2 years I was diagnosed 3a nsclc. I did 32 radiation and 2 rounds of chemo then 26 infusions of durvalumab. The immuno really wasnt that bad, at least not for me. I gained weight but I have to work on that. My find was incidental as well. I was in serious shock because I was in midst of being caregiver for my hubby who is stage 4 pancreatic. He is in his 3rd year of treatment. We call him our miracle. Anyway, while it is SO scarey and difficult, try to think positive. It really does help. Just tell yourself you can do it, you are not alone. You can post here, cry and do what you have to. Just know there is always hope and miracles do happen. My doc, just like Michelle, said treating with curative intent and thats what I'm keeping in my head. Try not to take statistics to heart. Everyone is different and the Man upstairs has the final say. Sending hugs and prayers your way. Opal
  15. Kind of seems like only us ladies are putting on the pounds. No where on Durva adverse effects did I see weight gain mentioned.
  16. Thanks Michelle. I read that too. I fear a head to toe rash like I got after last year's flu shot. While I'm not getting infusion, I know it's still in my system. I think I might take my chances and pass this year. Wondered what others are doing. Thanks for the info. Have a good trip and fun in the sun.
  17. Curious...if you are on or recently had immunotherapy, did you get the flu shot or plan to get one.
  18. Whatever happened to the Biden Cancer Initiative while he was VP? Never did a thing and it was suspended. Never hear anything about that.
  19. DFK, welcome to Post Durva Club 👏. You did it!! Your updated post gave me goose bumps. So can relate.! Did you ring tge bell? And may I say YOU are a "tough cookie" or wonder woman. Your travels of getting up and going to the airport then same return trip. Yikes, I complained some early mornings walking to the car cause I hated the depressing ride into the city. I stopped complaining after I read your post on your infusion trips. Will be looking for your follow up progress. My progress report on weight gain not great. I only lost 3 pounds since November and I'm not eating ice cream or junk. A ways to go. Also mindful of my blessings, Opal
  20. Hi DFK, Thank you, but no tough cookie here. My doc said I have good veins (hope they still are) and there was no need for a port unless I really wanted one. I get weak in the knees and was more afraid of a port so I declined. I will say some infusion staff were so good I never felt the needle. Anyway, I think you got this and will breeze thru your port removal just fine. Remember you came out on top before and you will do it again. Sending good wishes and prayers your way. Take good care, Opal
  21. Hi Grahame, I'm 3B same as you, mediastinal but Right lung. Also radiation and same chemo. I recently completed #26. Tomm's description of infusion was same for me. Yes labs were done each time before infusion. They watched thyroid. Actual infusion in chair was just about an hour. Other then pinch for IV I felt nothing. I only saw my oncologist at appointment after CT scans which was every 3 mos. Otherwise I saw nurse practitioner. Good luck to you. Opal
  22. DFK I did not have a port. It was my onc's decision and I was good with getting a stick every other week. One in the hand for labs then in the arm for infusion. I'm a big sissy for needles too. I'm repeating myself, mostly from joy, but the lack of fatigue is most noticeable and I am so glad it's gone. I feel pretty much my old self pre Durva, pre diagnosis except for the extra weight. I never had a weight problem so it's a bit annoying. Any other questions, ask away I don't mind.
  23. Barb and Tomm, you're almost there! You're doing great. You got this! Tomm, nice going on NED! Wanted to share, I remember I was really feeling the fatigue more and more, as I got closer to #26. My joints were screaming a little more too, and at #22, I just wanted to stop! BUT.... Now 10 weeks post infusions I am happy to say the fatigue is just about gone and my joints feel much much better. I think part of the secret is to move more, motion is lotion. Once you get moving cause it's hard to start, it gets easier on the joints and feels better. As for fatigue, take a nap if you need to, you deserve it. For a little achy joint or muscle I take an ibuprofen and it helps. For those who gained a few, I will report I'm having to work at losing the pounds I seemed to pick up. It's my current challenge. Wish you both and everyone else counting down on Durva the best. Opal
  24. DFK, you must be counting the days by now. I know I did. Time seems to fly except when you want it to. Just think, 2 weeks from now at this time Durva will be behind you. Congrats on a mission well accomplished. I vote you and Rower get together and take your knowledge, encouragement and gift you both seem to have to help others with your words, and travel the world, or at least across the States, cheering others like us on. Giving thanks, Opal
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