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Posts posted by Opal

  1. 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.


  2. 4 hours ago, Barb1260 said:

     I’m starting to get very anxious about what happens after. Just scans until it decides to rear it’s ugly head?  I’m not sure what to expect. Anybody have any thoughts?

    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. 


  3. 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.


  4. 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.



  5. 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

  6. 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. 


  7. 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. 


  8. 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.


  9. 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,



  10. Michelle...Just Saying.....I am SO happy to hear your good news!! WooHoo!  I've been off site a little wearing my caregiver hat X2 but I have you in my prayers every day. 

    Great on joining the Live Strong program. I'd love to do same just cannot find time for another schedule right now. Let me know how it goes.

    Amelia Island sounds wonderful. 

    You are not alone in that third size wardrobe. I'm right there with you. 

    Enjoy your trip and again, so glad to hear your scannews.(new word).


  11. 7 hours ago, DFK said:

    Hi Opal,

    You are a tough cookie.....As much as I have an aversion to pain, I elected to have a port placed in lieu of lab draws and IV insertions. Now I'm fretting the removal of my port. I know I'll be numbed up good for the removal but it's the healing and the subsequent "healing" pain I dread. I suppose after all that I have been thru, I can weather this too.

    Thanks, DFK

    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,


  12. On 1/15/2020 at 1:37 PM, Grahame Jelley said:

    Hi Just joined . Stage 3B adenocarcinoma left lung and mediastinal nodes. Completed radical radiation and chemo with Cisplatin and Etoposide and await commencement of Durvulamab. Interested in others experiences

    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. 


  13. 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. 

  14. 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.


  15. 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,


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