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Kleo

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  1. Like
    Kleo got a reaction from DFK 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!
     
     
  2. Like
    Kleo got a reaction from Sillycat1957 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!
     
     
  3. Like
    Kleo got a reaction from Roz 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!
     
     
  4. Like
    Kleo got a reaction from RonH 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!
     
     
  5. Like
    Kleo reacted to Tom Galli in Durvalumab   
    Barb,
    Is CyberKnife SBRT? Yes. SBRT stands for stereotactic body radiation therapy and one form of that therapy is CyberKnife. There are others but they all do the same thing: precisely zap tumors. 
    I'm a fan. Likely CyberKnife saved my life almost 16 years ago.
    Stay the course.
    Tom
  6. Like
    Kleo reacted to Rower Michelle in Durvalumab   
    I know how you feel Barb! Just called my onc today after a six pound weight gain in less than two weeks. Here comes the lasix again.  It’s a grey day here in KC someone flipped the fall switch fast here. 
    If the Wellbutrin doesn’t kick in within six weeks, ask for a psychiatric evaluation, there are newer more effective agents available. Hang in there. 
  7. Like
    Kleo reacted to Barb1260 in Durvalumab   
    12th infusion in process. Saw the oncologist instead of the PA. she’s not worried about the 5mm nodule on the left. Said if it grows we’ll do a biopsy. Could be inflammation because it pops of everywhere with the Imfinzi. At this point it means nothing. If it’s cancer we will zap it with cyberknife. Can somebody tell me if that is SBRT?  All these abbreviations play havoc with my chemo brain. Also putting me on Wellbutrin. Not only will it give me a little more pep but it will help with seasonal effective disorder because fall and winter are coming. It will also help with the weight gain and depression.  
  8. Like
    Kleo reacted to DFK in Durvalumab   
    Thanks so much Ron. You are providing such valuable information for all of us as you maneuver on the front lines. You're in my thoughts and prayers for PFS....carry on.
    Take Care, DFK
  9. Like
    Kleo reacted to Robert Macaulay in Durvalumab   
    Ron
    Thanks for the info this might be similar in my situation also,  as it looks like SBRT is on the cards for me at this time in November.?
  10. Like
    Kleo reacted to RonH in Durvalumab   
    Just another quick update on life after Durvalumab:
    My Onc called today saying that he received my Biomarker test results (EGFR) and that I had tested positive for the EML4-ALK gene mutation. I guess I have officially joined the ranks of the "Mutants" out there. The Onc said that they have had good results on PFS (Progression Free Survival) with a TKI called "Alecensa" (Alectiinib). I still have my Bronchoscope/EBUS tomorrow morning to biopsy a small indication on a lymph node that didn't show up on the PET scan last year, but showed with a very slight uptake this year. If it comes back benign, then a decision has to be made, SBRT on the one tumor in my right upper lobe or to start the targeted therapy. I guess the SBRT has around a 80% success rate, however the Rad Onc's are concerned as that location was already treated with radiation last year during the initial CRT. From my readings it is rare for them to treat the same location twice and UCLA says that they only do it in very select cases. (???). Of course, even if the SBRT is completely successful, there is no guarantee that I don't have some cancer cells floating around looking for a home. The other option is the Targeted Therapy which the ONC says shows good PFS, but is not considered a cure, however it does seem to help prevent/reduce metastasis to the brain. He also says that it also has some pretty significant adverse effects on some people. (Nothing like reading that that 2.8% of the people in the trials had an AE of death - yes I would say that was pretty adverse).
    I guess after  tomorrow I may have several options to consider over the next week. Of course yesterday I spent several hours with the Radiation Techs being fitted for the body restraint and breathing control belt for the SBRT and having 4 CTs done with and without the belt. I didn't much care for that breathing control belt as it felt like someone sitting on your chest/stomach restricting your breathing. I do understand the reason for it to limit the movement of your lungs (and therefore the tumor) during treatment but it was rather unpleasant.  Tentatively I start the SBRT (subject to change) the week of the 14th, for 5 consecutive days. If the lymph node is malignant, the SBRT is out and I'll go straight to the Targeted Therapy (pills twice a day, with apparently extremely expensive pills) the week after.
    I hope be able to get my full biomarker test results from the Onc before too long, but he felt the news about the positive EML4-ALK results was important  enough to call me about and the only result that really mattered for me. Not to mention that when the call came in, I was standing in a middle of a cemetery having just attended a funeral and it was not the most conducive location to be able to question the Onc in detail. No, I do not know what my PDL1 Expression is yet, but as Michelle noted earlier, "“Mutants” don’t respond to Immunotherapy even if there is a high PDL-1 (no one knows why)." so that explains why I am no longer on Durvalumab after 10 months and 18 infusions. I sure wish that all the Oncs would do the biomarker testing UPFRONT).
    Thanks All - I guess I will go do some reading on the above.
    -Ron
  11. Like
    Kleo got a reaction from BridgetO in Durvalumab   
    Hi Barb!
    Right now they only have me doing the 2 immunos...Tecentriq and Avastin every 3 weeks. Just had my 5th dose I think? They only did 2 Taxol chemos with immuno and then stopped the chemos as it was too much for me at once! Bleh.
    My last MRI showed all the small tumors were gone. (I think that's thanks to radiation!) They removed the one that was causing me pain. And the one I have left had shrunk. So....fingers crossed that last one goes away or shrinkie dinks too! If not...surgeon said he can get it. But...ewwwww. I don't like brain surgery. 😣
    I think Tecentriq is a lot like the Durva. It's a PDL1 inhibitor. I don't have PDL1 but doc seems to think it'll still work. I asked why give me the same kind of drug and she said they target the same thing but use different pathways. And she thinks it'll boost the Avastin. 
     
    Bob....good it can't find your brain!  Keep that thing hidden! 😎 Sounds like they are already planning to zap it. 
  12. Like
    Kleo got a reaction from DFK in Durvalumab   
    Hi Michelle!
    I never get the goodie bags!😣 All I got was a home test for my stool. Ridiculous crap 🤣
  13. Like
    Kleo got a reaction from Barb1260 in Durvalumab   
    Hi Barb!
    Right now they only have me doing the 2 immunos...Tecentriq and Avastin every 3 weeks. Just had my 5th dose I think? They only did 2 Taxol chemos with immuno and then stopped the chemos as it was too much for me at once! Bleh.
    My last MRI showed all the small tumors were gone. (I think that's thanks to radiation!) They removed the one that was causing me pain. And the one I have left had shrunk. So....fingers crossed that last one goes away or shrinkie dinks too! If not...surgeon said he can get it. But...ewwwww. I don't like brain surgery. 😣
    I think Tecentriq is a lot like the Durva. It's a PDL1 inhibitor. I don't have PDL1 but doc seems to think it'll still work. I asked why give me the same kind of drug and she said they target the same thing but use different pathways. And she thinks it'll boost the Avastin. 
     
    Bob....good it can't find your brain!  Keep that thing hidden! 😎 Sounds like they are already planning to zap it. 
  14. Like
    Kleo got a reaction from DFK in Durvalumab   
    Hi Barb!
    Right now they only have me doing the 2 immunos...Tecentriq and Avastin every 3 weeks. Just had my 5th dose I think? They only did 2 Taxol chemos with immuno and then stopped the chemos as it was too much for me at once! Bleh.
    My last MRI showed all the small tumors were gone. (I think that's thanks to radiation!) They removed the one that was causing me pain. And the one I have left had shrunk. So....fingers crossed that last one goes away or shrinkie dinks too! If not...surgeon said he can get it. But...ewwwww. I don't like brain surgery. 😣
    I think Tecentriq is a lot like the Durva. It's a PDL1 inhibitor. I don't have PDL1 but doc seems to think it'll still work. I asked why give me the same kind of drug and she said they target the same thing but use different pathways. And she thinks it'll boost the Avastin. 
     
    Bob....good it can't find your brain!  Keep that thing hidden! 😎 Sounds like they are already planning to zap it. 
  15. Like
    Kleo got a reaction from DFK in Durvalumab   
    Bob....that is exactly what happened to me! Went right to my brain!
    I still say I had WAY too many steroids with my Durva.
    And as far as this possible recurrence...maybe they will zap it! 
    Zapping works!
    Keep us posted....I still pop in and read up!
     
     
     
  16. Haha
    Kleo got a reaction from Rower Michelle in Durvalumab   
    Hi Michelle!
    I never get the goodie bags!😣 All I got was a home test for my stool. Ridiculous crap 🤣
  17. Like
    Kleo got a reaction from Sillycat1957 in Durvalumab   
    Hi Barb!
    Right now they only have me doing the 2 immunos...Tecentriq and Avastin every 3 weeks. Just had my 5th dose I think? They only did 2 Taxol chemos with immuno and then stopped the chemos as it was too much for me at once! Bleh.
    My last MRI showed all the small tumors were gone. (I think that's thanks to radiation!) They removed the one that was causing me pain. And the one I have left had shrunk. So....fingers crossed that last one goes away or shrinkie dinks too! If not...surgeon said he can get it. But...ewwwww. I don't like brain surgery. 😣
    I think Tecentriq is a lot like the Durva. It's a PDL1 inhibitor. I don't have PDL1 but doc seems to think it'll still work. I asked why give me the same kind of drug and she said they target the same thing but use different pathways. And she thinks it'll boost the Avastin. 
     
    Bob....good it can't find your brain!  Keep that thing hidden! 😎 Sounds like they are already planning to zap it. 
  18. Like
    Kleo reacted to Barb1260 in Durvalumab   
    Hi Kleo. Any updates on your treatment?  
    Thank you. The article was definitely interesting. 
  19. Like
    Kleo got a reaction from Rower Michelle in Durvalumab   
    Bob....that is exactly what happened to me! Went right to my brain!
    I still say I had WAY too many steroids with my Durva.
    And as far as this possible recurrence...maybe they will zap it! 
    Zapping works!
    Keep us posted....I still pop in and read up!
     
     
     
  20. Like
    Kleo got a reaction from Robert Macaulay in Durvalumab   
    Bob....that is exactly what happened to me! Went right to my brain!
    I still say I had WAY too many steroids with my Durva.
    And as far as this possible recurrence...maybe they will zap it! 
    Zapping works!
    Keep us posted....I still pop in and read up!
     
     
     
  21. Like
    Kleo got a reaction from Barb1260 in Durvalumab   
    Bob....that is exactly what happened to me! Went right to my brain!
    I still say I had WAY too many steroids with my Durva.
    And as far as this possible recurrence...maybe they will zap it! 
    Zapping works!
    Keep us posted....I still pop in and read up!
     
     
     
  22. Like
    Kleo 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
  23. Like
    Kleo reacted to Robert Macaulay in Durvalumab   
    Opal
    My thoughts are the Durvalumab done one excellent job of stopping any progression and they have caught this possible  recurrence at the original site early so i have no concerns there and from what i read there are lots of treatment options for recurrence at the original site.Thinking her plan is to let this settle take another CT then needle Biopsy  followed by pet scan and then hopefully targeted therapy depending on the results, Those decisions are up to the doc and as long as the are giving me treatment i am happy. The break is just fine by me.
    Bob
  24. Like
    Kleo reacted to Tom Galli in Durvalumab   
    Ron,
    I understand the saga of the long needle! But, I see goodness regardless of biopsy result: stereotactic radiation. I’m a fan and love the idea of frying tumors. 
    Stay the course. 
    Tom
  25. Like
    Kleo reacted to Robert Macaulay in Durvalumab   
    Tom
    Is that valid at Wallmart for discount. lol
    I would like to take this opportunity to thank Imfinzi for supplying me the drug and clinic at no charge. I never thought this thread would become so popular this last year thanks to the people on this forum who contributed and all those that viewed over this time.
    Special thanks to Kleo  who was a great support in the beginning of this journey and alas had to stop the drug.I believe it was because she did not receive the Durvalumab goody bag.😎 Thank you Kleo and all the best on your new path.
    Going forward thanks to everyone and it is my hope we all can benefit from this drug in the coming months and years. Going to take a break now and will update on my future scans ,The  word is it could take up to eight weeks for the side effects of the drug to wear off.
    Bob
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