Opal

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.

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

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

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

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.

I 2nd that Barb! She is a great support and inspiration!!

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

Bob, please keep us posted. Thanks for info on options.

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

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.

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.

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.

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.

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?

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.

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.

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.

Bob, what kind of dog breed is yours. Just curious.

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.

Hello all! Been a while since I posted and I see several "Durvies" joined this immuno journey since I posted end of March. So many of you put great and encouraging info out there. TX!! 1st... Hi to Kleo..got you in my prayers everyday! You keep on going! You mention no PDL1 but your lungs cleared up. Couldnt it have been Durva was working? Bob M -I'm behind you by just a few infusions, I'm up for #18. Please keep us posted on how you are and what happens next when you reach the end of infusions. I feel pretty similar to you as far as mutation or lack of or lack of testing. How is your cough? I have one and hope its side effect of the durva. Eagle, thanks for your encouragement to keep going and not fear scans. Hello to 2 Jersey girls😊 Here is my update since early April...in March I was having discomfort in my back near original tumor area so scans were done a week early. Small spot on my spine near tumor area. My Onc stopped Durval and sent me to RAD Onc, who BTW told me a year ago at radiation to eat eat eat. I have been doing so since and gained about 15 pounds and I'm still eating. Don't think its the Durva. No lack of apetite here. Anyway the RAD Onc, he is wonderful!! said he wasnt convinced spot was "C" and was not going to radiate but sent me to IR. Interventional radiology did biopsy and yippee, turns out not "C" but a minor fracture and I got a little cement. This episode set me back 2 infusions. I am behind a total of 4 infusions because after my very first 2 fifteen treatments ago, I got awful rash and concern for pneumonitis went on prednisone and then a taper which took about a month. This set me back 2. So after 17 treatments my new rash is slight and only on my forearms. I do get fatigue and dont have ambition and drive the old me had. But I try to stay positive and push myself. Sleep is awful. Anxiety is too. I have hard time not thinking "what if". My leg, knee and hip joints are fairly stiff. (Note to self..I am a year older)But I thank God I feel as good as I do. I did notice this went away when I was off Durva for the month. Must admit after a month of no infusions I felt really good. No short breath, cough or stiff bones or muscle aches. I get infusion every 2 weeks and typically can go shopping or out to dinner on way home so it really isnt anything like chemo. I'm due for scans next week. Scanxiety! I'm trying to stay off the internet because I dont like reading about OS etc. I am trying to think this treatment will be as my Onc says "with curative intent". And I'm not underestimating the power of prayer. Here in the States its a holiday. Happy 4th! (Sorry this was long).

Hi Barb1260, don't be nervous, it could very well work for you! Think positive and I will keep positive thoughts for you too. Good luck. T/P exit 2

Hello Durval pals, I will not be getting anymore Durval infusions, did not get #13 but got CT and MRI 3 weeks early due to what I thought was a pulled muscle creating some intermitent pain between my scalpula. My PC doc sent me for Xray, long story short I saw my oncologist and he said MRI shows a lesion on T5. Oncologist had me get blood work up to see if I have mutation...why dont they do it at the get go, I feel all those weeks getting infusion could be wasted. But that was standard treatment for stage III I was told. I'm scheduled for sterostatic radiation next week for the lesion. Does an MRI show cancer, because report uses words like "favorable" and "possible invasion from adjacent primary tumor". I am thinking I would prefer more definitive description before getting my spine zapped! I'm trying to be positive and think now I can perhaps get targeted treatment and this is going to be all good. Anyone have similar experience? Whew! High anxiety here!!

Hey Bob, Opal here.. I'm 2 infusions behind you tho I started 8/30 I had a nasty rash and my immuno was held. Happy to say that rash is gone but got blotchy rash on arms now. My lymphocytes are low too, but told not to worry. I'm due for scans about April 15 or so. Here's hoping we both get great results. Kleo.... wondering how your joint and back and side muscle pain is? You arent only one getting weird stuff, I too have strange joint back and muscle pain and stiffness. Tylenol is not helping. I get infusion this week and will be inquiring about this. Are these adverse reactions or side effects....or old age perhaps. Hope you are doing good and not working too hard😉

Kleo, SO glad to hear negative! And I'm sure you are glad that's over

Kleo, sending you prayers and all good thoughts tomorrow for your procedure.