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Roz

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  1. Like
    Roz got a reaction from DFK in Durvalumab   
    Tom,
     I can ask my doc again. Last time I asked, she said that it would be like  getting a needle biopsy for every one and where I have more than ten nodules that are varying from 1-1.8 cm in the lower right lobe, and then two more in the lower left lobe area..radiation wouldn't be an option that would work. Still waiting for a phase 1 trial at this point.
    Good luck to everyone out there!
     
    Ro
  2. Sad
    Roz got a reaction from Tom Galli in Durvalumab   
    Tom,
     I can ask my doc again. Last time I asked, she said that it would be like  getting a needle biopsy for every one and where I have more than ten nodules that are varying from 1-1.8 cm in the lower right lobe, and then two more in the lower left lobe area..radiation wouldn't be an option that would work. Still waiting for a phase 1 trial at this point.
    Good luck to everyone out there!
     
    Ro
  3. Like
    Roz got a reaction from DFK in Durvalumab   
    But cyber knife (SBRT) doesn't work on multiple lesions right? Just if you have one mass that can be zapped?
  4. Like
    Roz reacted to Kleo in Durvalumab   
    They zapped my head stuff in several locations over a 5 day period. That's multiple locations..... probably like 7 or 8. I guess that was SBRT?🤔 
  5. Like
    Roz reacted to Tom Galli in Durvalumab   
    Ros,
    CyberKnife on multiple locations, I’m not sure. I can’t think of a reason it couldn’t. There are easier stereotactic types like image guided radiation therapy IGRT. 
    My CyberKnife started with a thorasic surgeon implanting 5 very small gold targets (called fiducals) to allow radiation device to track the target tumor while I breathed.  So if fiducals are needed, that might limit treating multiple sites. 
    Radiation oncologists are getting very aggressive treating multiple tumors with precision radiation. I’ve heard terms like “spot welding tumors” or “scarring down tumors” at conferences. 
    Stay the course. 
    Tom
  6. Like
    Roz got a reaction from Robert Macaulay in Durvalumab   
    But cyber knife (SBRT) doesn't work on multiple lesions right? Just if you have one mass that can be zapped?
  7. Like
    Roz reacted to Kleo in Durvalumab   
    Ron....I think the docs get a little excited when they find a mutation. It gives them something to target!
    Still reminds me of Professor X and his XMen though.😄 I personally have NO mutations. Nada. Not even a speck of PDL1. They don't know what to do with me!😏
    What a tough call though....radiation or targeted therapy. I am like Tom with the radiation...big fan. I did the 5 day treatment and will say it definitely kicked my butt... so much more than the 30 day first treatment I had. But they were also aiming at the lung cancer- in my brain...I'm sure it's totally different!
    Barb & Michelle....I actually gained a few pounds while on the Durva. And I'm not a weight gainer...I'm a twig. So I really don't know if the Durva was the culprit or just the steroids they had me on. Both maybe!
     
     
  8. Thanks
    Roz got a reaction from RonH in Durvalumab   
    Sorry to hear this Ron!! Hang in there!!
    Hoping you get good news and can move forward in your treatment!!!
     
    Best,
    Ro
  9. Like
    Roz got a reaction from DFK in Durvalumab   
    Sorry to hear this Ron!! Hang in there!!
    Hoping you get good news and can move forward in your treatment!!!
     
    Best,
    Ro
  10. Like
    Roz got a reaction from DFK in Durvalumab   
    Ron,
    This sounds like great news!! Hope the treatment works!
     
    Best,
    Ro
  11. Thanks
    Roz got a reaction from RonH in Durvalumab   
    Ron,
    This sounds like great news!! Hope the treatment works!
     
    Best,
    Ro
  12. Like
    Roz reacted to RonH in Durvalumab   
    Just a quick update:
    Well I had my consult with my previous Radiation Oncologist (from last year) and she believes that she will be able to use stereotactic radiation for my recurrent tumor. Its about in a perfect location and size for SBRT, in the middle of my right upper lobe and not on the surface near a rib and is also far away from my spine, throat, heart etc. She does want to discuss with her practice partners as well as a thoracic surgeon first before making a final decision to treat or not, but at least I am currently scheduled to be fitted with the immobilization device next week. She has some thinking and calculations to do regarding the number of doses (fractions) she will use due to the same spot being irradiated last year, but is thinking between 6 to 10 fractions over a 2 to 3 week period (not the normal 5 +/- fractions over 1 or 2 weeks). Also I forgot to mention, my Medical Onc told me that there are some indications (not proven conclusive yet) that having radiation treatments while on or have had immunotherapy may kick start the immunotherapy drug again and help it be even more effective. This along with the Med Onc sending my biopsy and blood samples off for biomarker (EGFR) testing for possible targeted therapy treatments in the future puts me in a much better state of mind.
    Thanks all....I'll keep everyone posted! -Ron
  13. Like
    Roz reacted to Barb1260 in Durvalumab   
    Thanks DFK. I guess it was just shocking as I had the pain on the right which turned out to be nothing. I guess I should be greatful for the fact that the original tumor is smaller than July. You are such a positive person. I try to be, sometimes it’s difficult in this LC world. 🥳
  14. Like
    Roz reacted to Laurel in Durvalumab   
    The stress is ugly.  I go to youtube.com and do little 5 minute meditation videos.  It calms me a bit.  Soft hugs to you.
  15. Like
    Roz reacted to Barb1260 in Durvalumab   
    No spa, just a day at the lake 
  16. Like
    Roz reacted to Rower Michelle in Durvalumab   
    Barb- everything about scans just sucks. The pre-anxiety, getting poked and then the results.  Yuck.  I've got a tiny node (like 4mm) that they've been watching since my 1st CT scan last year.  Nothing's moving so they are not worried about it.  @MBinOregon had some great advice,  don't open the umbrella unless it's raining.  Hang in there- any good spa appointments in your schedule?   Prayers for you my friend... 
  17. Like
    Roz reacted to Robert Macaulay in Durvalumab   
    Tom
    She mentioned  radiation option in that area again and she will discuss that option with the team next week, If i get anymore radiation i might be candidate for Los Alomos  New Mexico. I am fine with what ever plan they come up with and that the cancer has never spread thanks to Durvalumab and feel in very good health as the side effects are in decline from that drug. .Seven hours straight sleep last night.
    Bob
  18. Like
    Roz got a reaction from DFK in Durvalumab   
    Bob,
    I'm sorry to hear this news but still holding out hope that perhaps it is not a recurrence.
    I hope the PET scan shows that all is well!!
    Take care,
    Ro
  19. Like
    Roz got a reaction from Robert Macaulay in Durvalumab   
    Bob,
    I'm sorry to hear this news but still holding out hope that perhaps it is not a recurrence.
    I hope the PET scan shows that all is well!!
    Take care,
    Ro
  20. Like
    Roz reacted to Charles in Durvalumab   
    Tomm,
    The bottom line, I have found is this : It is what you can stand and or how hard your onc is willing to work on your side effects before sending you to a specialist or pulling you off durva. I am a military veteran so tiredness and fatigue has never been a stranger to me and I have found that everybody's definition of the two vary with the definer's abilities. That being said, The endocrine (Thyroid) side effects and opthalmalogical ones are a little more rare than the fatigue and tiredness ones on durvalumab. At a prolonged tsh level of 59 I experienced muscular failure at minimal effort (chewing food or standing for short periods of time) experienced slurred and slow speech patterns , a weight gain of 30 pounds in one month, light sensitivity and visual blurring and changes in my eyes with swelling of the face and eyes, and felt like I was having a slow stroke, if you will, and was getting weaker and weaker day by day as well as doing a durvalumab "waddle" whenever I walked. I have been on prednisone since my 2nd infusion and have shown very good (I think) tumor shrinkage with no mets in spite of all the prednisone up to this point. I have quite a few bottles of different mg. of prednisone as well as a prednisone pack and a "just in case" 20mg. prescription that stays current as I said, just in case. My oncologist has all but let me write my own prescriptions for everything as he knows I want to kill this cancer and will crawl up to death's door to stay on Imfinzi. My Onc also has a good friend on the Pacific Coast Imfinzi trial team that has told him that they are prescribing ongoing prednisone of 10 mg. while staying on Imfinzi and they are having good results doing it. Truth is, Prednisone has helped me to stay on Durvalumab and I will continue 10mg. per day until no longer necessary  Thanks be to GOD, radiation technology, Chemo, Sodium Bicarb, and prednisone. Results do vary though.....
  21. Like
    Roz reacted to Barb1260 in Durvalumab   
    #9 done. Only 17 to go. April seems a long way away. 
  22. Like
    Roz reacted to DFK in Durvalumab   
    Uneventful #16 infusion yesterday. All labs within normal parameters. 
    Repeat DLCO test at 64% today, up from 44% after pneumonitis in April. Don’t know if time and healing accounted for generous jump in DLCO value but I'd like to attribute it to my tenacity in starting an exercise program. Baby steps to wellness.....I'll take it.
    Carry on everyone.
    With Gratitude and Blessings
    DFK
  23. Like
    Roz got a reaction from Charles in Durvalumab   
    BTW, I'm already on thyroid meds for hypothyroidism so I have it checked pretty regularly.
    I do think it's probably going to be considered to be within the normal range, but we'll see.
     
    Take care everyone,

    Ro
  24. Like
    Roz reacted to Charles in Durvalumab   
    here is another link about the thyroid and immunotherapy
     
    https://voice.ons.org/news-and-views/how-aprns-can-manage-immunotherapy-related-hypothyroidism-in-patients-with-cancer
  25. Like
    Roz reacted to Charles in Durvalumab   
    here is a link about our "little freing" the thyroid
    https://www.ncbi.nlm.nih.gov/books/NBK279388/
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