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Kleo

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  1. Confused
    Kleo got a reaction from Robert Macaulay in Radiation again?!   
    Same radiation doc. She knows what I had... she gave it to me!
    She also told me if my ribs started hurting again I could call her and she'd zap it to try to ease the pain. That's nice I guess but I think I'd rather wait to see what the biopsy says before just jumping into more radiation. She must work on commission. LOL
  2. Like
    Kleo reacted to Robert Macaulay in Radiation again?!   
    Kleo
    Now the same tumor that is a intresting question.The radiation doc here got all my records from the previous radiation on my neck and he checked them prior to treatment on my chest.
    This might help
    Questions that must be asked by the radiation oncologist planning the therapy include: "Is the same area of the body being irradiated as was irradiated before?" "How much radiation was given to that site before and how much radiation is needed to kill this second particular cancer?" The physician will want to get records of the previous radiation, and the decision to radiate a second time frequently requires computer simulation (radiation planning).
    Bob
  3. Like
    Kleo got a reaction from Robert Macaulay in Radiation again?!   
    Hey all...just thought I'd put this question out there in case anyone here had this experience.
    Has anyone had radiation treatment to the same tumor... twice?
    I thought you could only do one round of radiation treatments on an area, but my radiation doc is talking about doing Stereotactic radiosurgery (?) now for my tumor.   My recent PET shows that the tumor shrunk quite a bit from prior treatments but still shows an SUV of 3.6. 🤨
  4. Like
    Kleo reacted to Roz in Radiation again?!   
    Sorry I don't know anything about radiation Kleo. Hope someone answers your question!!

    Best,

    Ro
  5. Like
    Kleo got a reaction from Roz in Durvalumab   
    Just got in from radiation doc. She said likely I'll have to do another biopsy on the rib that's lighting up. Said she will get with my onc and they are going to take it to the tumor board but she may want to try stereotatic radiosurgery on my initial tumor. Didn't think you could do radiation again to the same area but what do I know. 😕
    Now I gotta wait to see onc on the 19th to see what the plan is now.
    Que sera and Fa La La La La!
  6. Like
    Kleo reacted to Robert Macaulay in Durvalumab   
    Opal
    Regarding the antibiotics these results are random tests nothing more if doctor gives you antibiotics there is very good reason. What comes first the horse or the cart. .Lol
    Antibiotics over the course of your treatment might be a concern for a individual, That is why doctors get the big bucks and never fell asleep at classes like me.
    That song is as good as any works real well for me.😎
     
  7. Like
    Kleo reacted to Opal in Durvalumab   
    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.
     
  8. Like
    Kleo reacted to Eagle13 in Durvalumab   
    Kleo-
    I too wish they had done the biomarker testing on my biopsy.  My biomarker testing was done on the fluid pulled from the thoracintesis.   I also had blood pulled that confirmed the finding from the biomarker testing.  In my opinion it can be done from bloodwork.
    🦅
  9. Like
    Kleo got a reaction from Roz in Durvalumab   
    Opal...I've had prednisone before and it didn't bother me much. Everyone must react differently!
    Well heck I wish you could get your infusions lined up with ours...then we could be durva TRIPLETS!😂 Heehee.
    I go tomorrow to the radiation doc. She'll have the recent PET results. Really though I'm not even sure that anything can be done at this point but watch and wait. None of this new stuff is big enough to biopsy I don't think.  Dangit I wish they'd done the biomarker testing in the first biopsy. 😕
    Bob tell the doc you can't suspend durva because it'll mess up our treatment twin schedule.🤣
  10. Like
    Kleo got a reaction from Roz in Durvalumab   
    Eagle I do get copies of all my scans. I get them before the docs do sometimes I think! LOL But I live next door to the imaging center so it's pretty easy to walk over and get them.
    While I'm waiting to find out doc's interpretation of results, I'll just focus on the positive...the tumor has shrunk significantly. NONE of my lymphnodes are showing any activity anymore. 
     
    It's the cancer cha-cha. 
     
     😁
     
  11. Like
    Kleo got a reaction from Robert Macaulay in Durvalumab   
    Yikes! Yeah unless it gets real bad...I think pass!😫
  12. Like
    Kleo got a reaction from Robert Macaulay in Durvalumab   
    Opal...I've had prednisone before and it didn't bother me much. Everyone must react differently!
    Well heck I wish you could get your infusions lined up with ours...then we could be durva TRIPLETS!😂 Heehee.
    I go tomorrow to the radiation doc. She'll have the recent PET results. Really though I'm not even sure that anything can be done at this point but watch and wait. None of this new stuff is big enough to biopsy I don't think.  Dangit I wish they'd done the biomarker testing in the first biopsy. 😕
    Bob tell the doc you can't suspend durva because it'll mess up our treatment twin schedule.🤣
  13. Like
    Kleo reacted to Opal in Durvalumab   
    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. 
  14. Like
    Kleo reacted to Robert Macaulay in Durvalumab   
    Kleo
    Had some antibiotics prior to starting Durvalumab from the Doc  for previous congestion very similar and they cleared it up so she gave me some more when i was on chemo in July.  Right now just the antibiotic,  I also found out on the Durvalumab website that  Mucinex is compatible and Tums as i take them for calcium levels.
    Right now i feel  my breathing is back to normal, But watch that cough as that is how mine started just little in the morning nothing to worry about  till the congestion got worse and i now believe i got a infection similar to earlier this year but it sure was a wake up call .
    Bob
  15. Like
    Kleo got a reaction from Robert Macaulay in Durvalumab   
    Opal I'm glad you got to resume your durva! Hey that's a possibility that the rash coulda been from flu shot combined with treatment. Maybe freaked out your system!
    Well now your treatments are opposite weeks from ours. You go Thursdays? Bob and I have somehow inadvertently synched our treatments...( Twinning. lol) We get them on Wednesdays. The next one is the 19th.😂 
    I have some cough too. Mine's only in the mornings for a bit after I first get up. Then it goes away the rest of the day. I'm watching for anything new or weird. I guess pneumonitis woulda shown up in the pet or xray though. Wouldn't it?
     
    So Bob...are you on an antibiotic now too or just the cough meds?
     
  16. Like
    Kleo got a reaction from Robert Macaulay in Durvalumab   
    I see radiation doc on Monday but not sure she'll know anything. I see oncologist on the 19th. I kinda expected the right side to show something though after that pain I had. Could be cancer starting in my ribs... or could be inflammation I guess. It's the same general area that my last PET in May said had a very small uptake...they suggested it was post traumatic change...whatever that is. 🤨 
    I can't worry bout those new little nodules yet. 3 of em have no activity sooo....... Not gonna sweat the little sh*t. LOL
    Will update when I get with the onc.
  17. Like
    Kleo got a reaction from Robert Macaulay in Durvalumab   
    Eagle I do get copies of all my scans. I get them before the docs do sometimes I think! LOL But I live next door to the imaging center so it's pretty easy to walk over and get them.
    While I'm waiting to find out doc's interpretation of results, I'll just focus on the positive...the tumor has shrunk significantly. NONE of my lymphnodes are showing any activity anymore. 
     
    It's the cancer cha-cha. 
     
     😁
     
  18. Like
    Kleo reacted to Eagle13 in Durvalumab   
    Here is a good link that describes the PET and the differences from a CT.
    https://my.clevelandclinic.org/health/diagnostics/10123-pet-scan
    My personal experience has been insurance wont approve the more expensive PET unless the Dr has a pre-scan approval discussion with the ins company Dr.  The PET is newer more advanced technolgy where the CT is the main stay.
    You should ask for a copy of each scan from each provider along with the radiologist report.  Its your medical record.  I have personally taken my scan results to get second and 3rd opinions from no kidding top notch experts.  
    Don’t be afraid to demand the genetic biomarker testing.  This is what changed direction for me after the Durva was not working.
     
    🦅
  19. Like
    Kleo reacted to Robert Macaulay in Durvalumab   
    Kleo
    I have had eight so far and the next is due on Dec-19. I have never seen any of my scans and they have never offered to show them to me and most time i wait for the doctors to comment and let them do all the talking till they run out of things to say and i just nod my head and give them thumbs up. If i do have concern or question i will bring it up and i get out as soon as possible. As long as i feel good and they are happy the way  all my treatment has been going.Now this week after the infusion things took different direction with the cough and congestion and the advice for that was to get medical help.
    There is one thing that comes to mind during the last infusion i never took any water  and even when i got home same thing no water and at 9pm the coughing started all the way to 4am and i think now this stupid move on part not having water and played big factor. Cough is down to just clearing my congestion and that is loosening up thank goodness.
    I did wonder why they ordered the pet instead of the regular ct but there is no way i could answer that question. At this stage let the doctors do the interpretations and let them tell you the course of action if any,  And also you do not want to miss out on the Xmas  basket from Durvalumab.
  20. Like
    Kleo got a reaction from Robert Macaulay in Durvalumab   
    I always do this...I get my scan results before I see the doctor. That's bad really because then I interpret them myself! LOL Really you aren't even supposed to do a pet scan for 4-6 months post radiation because it can give false positives. Mine is slightly early...my 4 month mark is the 15th. I may have been prematurely PET-ed.😜 
    So I could be freaking out for nothing here. Could be just post treatment activity...who knows. Wouldn't be the first time I overreacted. Remember in chemo when I got thrush & thought I was turning into a zombie? 🤣
    Bob how many durva's have you had now? I'm only at 5 so far.
    Opal...have you resumed durva treatments? 
     
  21. Like
    Kleo got a reaction from Robert Macaulay in Durvalumab   
    Bob are you doing CT scans or PET scans? I look great in the CT's! Tumor super shrunk and nothing else looked bad. 
     
    Kinda bombed that PET today though. Dang it.
     🎵*whistles dixie"🎵
  22. Like
    Kleo reacted to Robert Macaulay in Durvalumab   
    Kleo
    Feeling lot better today my Stomach muscles are still sore from all that coughing feels as if i did five situps in  succession. lol  When you are on Durvalumab i thought i read it is not advIsable to take Antibiotics ,I asked the doc if she had anything and she never replied so i said what about store bought products and she agreed.So couple of Mucinex a day and couples swigs of Robitussen will get me back to normal what ever normal is these days.  lol.
    I got my curve ball thrown at me with the coughing  hours after the infusion and was fully expecting to be given Predisone and the treatment stopped. You just got a fast ball thrown at you today and i fully expect i will get one someday as all cancer patients do during treatment . I am expecting a phone call early next week as my oncologist is back and looks at my scan from yesterday and compares it to Oct-29 results I might also be whistling Dixie or my favourite  Que sera sera.
    The positives is they done the right thing giving you the Pet Scan and both doctors will come up with a new game plan based on what they interpret from the skin flick.  lol
    Get your appointment book ready for 2019 and away we go again. Hi Ho Silver
    Bob
  23. Like
    Kleo reacted to Roz in Durvalumab   
    Kleo,
    I don't think there are any words that really help when dealing with all of this. Just know that there's a whole group of us here that are routing for you and continuing to send positive vibes and support your way. Waiting for your update after you see the onc...
     
    Best,

    Ro
  24. Haha
    Kleo reacted to Rower Michelle in Durvalumab   
    I’m rooting for you Kleo!  
    The Kleo-Bob show is better than Netflix!  
  25. Like
    Kleo reacted to LexieCat in Durvalumab   
    Aw, Kleo,
    I'm so sorry--that's gotta be discouraging.  When will you see the oncologist to get a better idea what any of this means?
    Sending a hug (and a tissue).
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