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Everything posted by Opal

  1. 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).
  2. 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
  3. 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!!
  4. 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😉
  5. Kleo, SO glad to hear negative! And I'm sure you are glad that's over
  6. Kleo, sending you prayers and all good thoughts tomorrow for your procedure.
  7. Kleo, or shall I say Dr Kleo, you are too funny but you were right on, it seems about flu shot and infusion too much at the same time. Sending prayers and all good thoughts for you on your needle biopsy. You won't feel a thing! Eagle13, wonderful to hear about your CT results and targeted therapy!!
  8. Bob, thanks for reply. I did have both within hours and then rash started. After some searching I found there have been few studies on flu "jab" and Immuno in Basel Switzerland and Kleo was right!! The combination together did have big effect on my system.
  9. Bob, Kleo, wonder if either of you got the flu shot while on Durvalumab
  10. Bob, it took a minute but I get it! Thanks for that!! Eagle 13, after reading your reply I do recall reading that thru this journey. Thanks for the link. And for your story.
  11. Eagle13, I agree and also don't understand why this isn't done first. I'm going to inquire next appointment. May I ask what is difference in targeted therapy and immunotherapy you were getting? Good luck next week on CT. Maybe you will share. "Never underestimate the power of prayer"
  12. Kleo, I was taking Prednisone 70mg daily. Fairly high dose. I was fine on them. Except made me cranky, eat eat and eat more, and cry for no reason. Oh and sleep was limited. I've heard some people had worse side effects so probably everyone reacts differently. TRIPLETS lol! Then maybe I wouldn't get any side effects either😀 (from durva). Keep us posted on rad doc visit. Sending prayers. Bob, Re the link on antibiotics, OK now I'm wondering about those antibiotics I took while my Immuno was on hold. So even tho it was only on Mon, Wed, Fri while I was on steroids. Wonder if that cancelled out 3 prior infusions. Shall I sing Que sera sera???😥 Next visit I'm asking about Biomarkers. I didn't have done either.
  13. I got fingers crossed you won't need Prednisone and have to stop Durva. I begged they take me off the Prednisone. Wish I was on West coast but on East coast.
  14. Bob, I had inflammation too. I believe that's why they kept me on steroids longer and added the antibiotics.
  15. Hey Kleo, you are passing me by number on infusions now. I would have been on schedule with you and Bob if I didn't have to stop for a month. I go Wednesdays or Thursday whenever I can get an appointment or "chair". I'm pretty sure pneumonitis would show up on CT or PET. I was put on antibiotics along with the Prednisone, they were being cautious, in case whatever showed on my CT scan was pneumonitis. Turns out it wasn't. Glad your spasms stopped. I didn't get any Durva basket either😞 so don't feel alone on that one.
  16. Kleo, I did resume the Durva on Nov 28. Going again on 12/ I too, wondered why you were getting PET and not CT. Think positive! Hey your tumor shrunk and that's great news. Bob, can you clarify what you wrote in your post an hour ago about the flu shot? I got my flu shot on the same day as infusion #3! Yikes! BTW I've been coughing too. Seems worse in the evening. I too am taking cough med. I'm happy so far 1 week since infusion and only an itch here and there YIKES! same nurse gave me flu shot THEN did my infusion. May be the reason I got the travelling "rash"!? I think I am posting the whole message again. Not figured out how this work. Anyway you have been OK with Immuno so any reaction I'd think could be antibiotic. Good luck and thanks for your experience and pointers with this.😊
  17. Kleo, I did resume the Durva on Nov 28. Going again on 12/13. I too, wondered why you were getting PET and not CT. Think positive! Hey your tumor shrunk and that's great news. Bob, can you clarify what you wrote in your post an hour ago about the flu shot? I got my flu shot on the same day as infusion #3! Yikes! BTW I've been coughing too. Seems worse in the evening. I too am taking cough med. I'm happy so far 1 week since infusion and only an itch here and there.
  18. It seems to be a common side effect yet not much out there about it.
  19. Thanks for sharing. I'll see if I can find it here. I'm using RX steriod creams costing a fortune and not stopping the rash. My rash doesn't itch, just looks ugly. I can live with it but wish I knew if it really was the immunotherapy causing it. Thanks again for info. I hope I can get back on and do as well as you are!!
  20. Hey Bob, would you mind sharing what the itch cream is? Maybe it is the answer to my rash. As I'm still scratching here haha. Actually seems my rash is easing up so not sure if from tapered steroids or almost 2 months since last infusion.
  21. I'm fairly new here and after some searching have not found much on anyone getting Immunotherapy and having a rash side effect which I read is fairly common. I've had 3 treatments of Durvalumab but doc held it after I got pretty good rash probably grade 3. Has anyone had this as a side effect? Other than rash it wasn't too bad getting thru it. I'm stage 3b diagnosed in May. I'm beginning to think I'm super sensitive and am a rare one with rash.
  22. I haven't seen anything more posted on Durvalumab. Wondering if I'm not looking in right place on site, or are those on this immunotherapy doing well with it and no side effects? Would love to hear from you. I had 3 infusions and my oncologist put me on hold until my rash clears up. Seems next start date for me is end of Nov with hopes rash doesn't return.
  23. Got my fingers crossed for you too. Thanks for your reply.
  24. Hi! I'm newbie here and finding way around site. Wondering if anyone on Durvalumab got the "rash" or other side effects? I started #1 infusion of Durv 8/30, then 9/11 and 9/27 and few days after 8/30 I started getting bumpy skin which turned into red bumps and is still moving to new areas. Doc stopped 10/9 immune and put me on 70 mg Prednisone. I'm tapering down now. Still have red bumps. Altho not a crazy itch it isn't pretty. I'm due for CT for radiation doc 11/1. Scanexiety! From what I see on site seems I'm close to a couple others doing this same immuno. I'd love to hear from you.
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