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Sillycat1957

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  1. Like
    Sillycat1957 got a reaction from Barb1260 in Durvalumab   
    Tomm, you are just too much lol! glad your still NED and getting back to a normal pace once again 😃
    Lindsay, my post Durva life is coming along, as I wait for my scans in November I'm starting to get a little squirrely here though, the scanxiety is starting to kick in! 
    But, I am returning to my job part time next week Yay! so that will keep me occupied (Covid be damned) it will be a safe place to work, and I will be amongst friends and I just can't wait!
    Question? Anyone else have a bone scan after they completed Durva treatment? I've never had one, I read up on them and I'm just curious, I do have arthritis, and I read an article that stated that ICIs' can cause it to become problematic and cause some cancer progression. I did not like that, at all. This is a short excert of the article from MedPage Today dated Oct 9th, 2020 I can't fit the whole article, and there is no link to share it, so should I be worried?
    Thanks and Take care 
    Roseann
    ***Cancer patients treated with immune checkpoint inhibitors (ICI) who develop severe arthritis may be at risk for progression of the malignancy, a single-center study suggested.
    Almost 90% of patients treated with ICI develop immune-related adverse events, which can include pulmonary, gastrointestinal, dermatologic, and rheumatic events. Arthritis has been reported in almost 4%, with the most common presentation being a rheumatoid arthritis (RA)-like phenotype characterized by small-joint involvement.
    In a cohort of 42 patients with ICI arthritis whose baseline Clinical Disease Activity Index (CDAI) was 15 and who were followed for a median of 7.4 months, the median time to arthritis onset was 2.8 months, according to Karmela Kim Chan, MD, of the Hospital for Special Surgery in New York City, and colleagues.
    In a multivariable analysis that adjusted for time to onset of arthritis after initiation of ICI therapy and for the use of disease-modifying antirheumatic drugs (DMARDs), each one-point increase in baseline CDAI was associated with a 9% increase in the likelihood of cancer progression (HR 1.09, 95% CI 1.00-1.19, P=0.05), the researchers reported online in ACR Open Rheumatology.
     
  2. Like
    Sillycat1957 got a reaction from Tom Galli in Durvalumab   
    Tomm, you are just too much lol! glad your still NED and getting back to a normal pace once again 😃
    Lindsay, my post Durva life is coming along, as I wait for my scans in November I'm starting to get a little squirrely here though, the scanxiety is starting to kick in! 
    But, I am returning to my job part time next week Yay! so that will keep me occupied (Covid be damned) it will be a safe place to work, and I will be amongst friends and I just can't wait!
    Question? Anyone else have a bone scan after they completed Durva treatment? I've never had one, I read up on them and I'm just curious, I do have arthritis, and I read an article that stated that ICIs' can cause it to become problematic and cause some cancer progression. I did not like that, at all. This is a short excert of the article from MedPage Today dated Oct 9th, 2020 I can't fit the whole article, and there is no link to share it, so should I be worried?
    Thanks and Take care 
    Roseann
    ***Cancer patients treated with immune checkpoint inhibitors (ICI) who develop severe arthritis may be at risk for progression of the malignancy, a single-center study suggested.
    Almost 90% of patients treated with ICI develop immune-related adverse events, which can include pulmonary, gastrointestinal, dermatologic, and rheumatic events. Arthritis has been reported in almost 4%, with the most common presentation being a rheumatoid arthritis (RA)-like phenotype characterized by small-joint involvement.
    In a cohort of 42 patients with ICI arthritis whose baseline Clinical Disease Activity Index (CDAI) was 15 and who were followed for a median of 7.4 months, the median time to arthritis onset was 2.8 months, according to Karmela Kim Chan, MD, of the Hospital for Special Surgery in New York City, and colleagues.
    In a multivariable analysis that adjusted for time to onset of arthritis after initiation of ICI therapy and for the use of disease-modifying antirheumatic drugs (DMARDs), each one-point increase in baseline CDAI was associated with a 9% increase in the likelihood of cancer progression (HR 1.09, 95% CI 1.00-1.19, P=0.05), the researchers reported online in ACR Open Rheumatology.
     
  3. Like
    Sillycat1957 reacted to Lindsay in Durvalumab   
    Good Morning Durva Club!
    It seems we have a lot to celebrate! Congrats SillyCat on completing your Durva, I hope your scans come back excellent, please update us once they are back!!!
    I just made it to the halfway point, and I'm so excited, it seems to have gone a lot faster than I anticipated. Mind you, I'm only going once a month, so I don't feel my life has been THAT interrupted. (Thanks COVID)
    I'm also happy to report that I've had very minimal side effects which has also been a blessing, I'm hoping these next 6 months don't change that. 
    I'm curious what the next steps have been for some of you after you've completed treatment. I've talked with my onc about it, and it seems that it depends on how much of the tumor is gone/dead. I'd love to hear some real life stories of what to expect next. 
     
  4. Like
    Sillycat1957 reacted to Tomm in Durvalumab   
    Lindsay..
    real life after Durva, as Doctors tell us after we find out we have cancer and we ask what to expect they tell us we are all different. I was NED when I started Durva and  stayed that way during my entire treatment year. I finished in March and still have some fatigue but am now able to mow my lawn and harvest my garden and  go to the grocery for my curbside pickup. My onc tells me non of his Durva patients has had a recurring cancer   after Durva is done. So real life after is great, your future is Bright.
    I got results from my CT last week... still NED
    Good news! There are well over 100 labs in America working on developing a vaccine.
    Just wait til they get the German shepherds involved!
     
    .
  5. Like
    Sillycat1957 got a reaction from Barb1260 in Durvalumab   
    Thank you all for your input, I have some pondering to do, I reckon.
    Tomm, when I have CT scans they use a vien, guess they are not skilled in using a port.
    Barb, I kinda feel like you do, why tempt the cancer monsters at rest
    Opal, you brave woman! You must be Wonder Woman in disguise! You go Girl 💥
    Eagle13, hmm, I am happy, you are happy! Continued blessings Namaste 🙏
    Michelle, meant to say in my earlier post love your photo, so nice to put a face to a name. You are lovely my dear! 
    Good Day all!
    Roseann
  6. Like
    Sillycat1957 got a reaction from LouT in Durvalumab   
    Thank you all for your input, I have some pondering to do, I reckon.
    Tomm, when I have CT scans they use a vien, guess they are not skilled in using a port.
    Barb, I kinda feel like you do, why tempt the cancer monsters at rest
    Opal, you brave woman! You must be Wonder Woman in disguise! You go Girl 💥
    Eagle13, hmm, I am happy, you are happy! Continued blessings Namaste 🙏
    Michelle, meant to say in my earlier post love your photo, so nice to put a face to a name. You are lovely my dear! 
    Good Day all!
    Roseann
  7. Thanks
    Sillycat1957 reacted to Opal in Durvalumab   
    Sillycat...re the port... No wonder woman here. I watched my husband get stabbed in his port for 2 years before I started chemo then Durva.  His stab looked much more painful. I used to get weak in the knees. Just wanted to throw that out there in case anyone gets a port removed and ever (hope and pray not) has need for one. The vein route isn't so bad.
    Opal
  8. Like
    Sillycat1957 got a reaction from Tom Galli in Durvalumab   
    Thank you all for your input, I have some pondering to do, I reckon.
    Tomm, when I have CT scans they use a vien, guess they are not skilled in using a port.
    Barb, I kinda feel like you do, why tempt the cancer monsters at rest
    Opal, you brave woman! You must be Wonder Woman in disguise! You go Girl 💥
    Eagle13, hmm, I am happy, you are happy! Continued blessings Namaste 🙏
    Michelle, meant to say in my earlier post love your photo, so nice to put a face to a name. You are lovely my dear! 
    Good Day all!
    Roseann
  9. Haha
    Sillycat1957 reacted to Tomm in Durvalumab   
    Roseann,
    my last infusion was in March and I still have my port, they use it for my CT with contrast every three months (tomorrow) and the doc said if it isn't a bother to me he will leave it in.
    Why did the chicken cross the road?  Because the chicken behind it didn’t know how to socially distance properly.
  10. Like
    Sillycat1957 reacted to Eagle13 in Durvalumab   
    I had my port removed in Dec 2018.  Last Durva infusion was July 2018.  I was glad to have it removed and have not needed it since. 🙂
    My treatment changed and am fortunate that I have not needed any infusions.  I feel very blessed. 🙏🏻
     
    🦅   
  11. Like
    Sillycat1957 reacted to Opal in Durvalumab   
    Sillycat!!  Congrats!! Welcome to Done Durva Club.  You did it!! 
    I survived the infusions, all 26, no port. Went the vein route but my Onc said I had good veins no reason to give me a port. In a crazy way I got used to it  but don't know how because I'm wildly petrified of needles.  Nurses were wonderful!
    Enjoy having a little extra space on your calendar now and Best Wishes for great scans.
    Opal
  12. Like
    Sillycat1957 got a reaction from Tom Galli in Durvalumab   
    Thank you everyone, yes I'm a well baked done Durva Queen LOL! Hopefully now on to somewhat of a normal life, not being tethered to a cancer center every other week!
    Just a port flush every 6 weeks until I can have it out, as long as all goes well after my scans.
    Question, to others that have finished? Did you have your port removed? Or were you one of them there brave souls who went the straight in the vein route?  I shudder when I think of those that have done that!
    Tomm, yes you are a weredoe lol!
    Good day all
    Roseann
  13. Like
    Sillycat1957 got a reaction from LouT in Durvalumab   
    Barb, a little late, but good for you! I hope every cell comes back cancer free!
    On another note, I finally finished my year long (very long) treatment of Durvalumab! On Aug 24th, Yay me! There were times I thought I would rather die. Don't fret y'all newcomers to the Durva Club 🤪 I can be quite dramatic at times! But all's good. I had a few hic cups along the way.
    I welcome you all to the club. It has helped me to navigate my journey quite well. I have a CT Scan and Bone Scan schedule at the end of this month, then I see my Oncologist on November 12th for the results. Happy to say I am off all pain meds and Xanax too. However, I am way too squirrely and think maybe I should be on some kind of anxiety med, also I was given Tramadol for pain, I hate it, makes me want to puke. 
    Michelle, even tho I gave my APRN and DR the info on Naltrexone for pain relief, they insist that it is for drug addition. But they are willing to refer me to a pain clinic. Unfortunately, they are missing the point completely. Ugh! My Onc feels my pain is cancer related so I should no longer be in pain WTF! Am I now cancer free? Does she know something I don't?
    Guess I will just wait for my scans and appointment in November 😁
    Have a great weekend everyone
    Take care
    Roseann
  14. Thanks
    Sillycat1957 reacted to Barb1260 in Durvalumab   
    Hey Roseann. Welcome to the finish line!!!  I sometimes think my onc isn’t understanding what I’m saying either. I sometimes go home and call, leave a msg, the nurse calls me back and then she translates to the onc. Then she gets what I’m saying!  I don’t know why that works. Let us know how those scans come out. Enjoy your medical freedom! 
  15. Thanks
    Sillycat1957 reacted to Rower Michelle in Durvalumab   
    Congrats on joining the Done with Durva group!   That’s fantastic, I remember your early posts and girl you’ve come a long way!
    Keep on the LDN at the pain clinic, they will definitely know about it! 
     
    Rock and roll!!!!
  16. Thanks
    Sillycat1957 reacted to BridgetO in Durvalumab   
    Yay, Durva grad!  I'm glad you were able to hang in there for the entire course.
    Bridget O
  17. Haha
    Sillycat1957 reacted to Tomm in Durvalumab   
    Roseann
    congratulations on joining the Done with Duva club. A year of your life is a big investment and it appears it paid off for you. 
    A link on Naltrexone .. https://khn.org/news/naltrexone-addiction-medication-chronic-pain-treatment-small-doses/  
    and this link is about it's use for cancer treatment https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6126779/  I get it from my naturopathic oncologist.
    I was once bitten by a rabid female deer.
    Now, every time there's a full moon, I turn into a weredoe.
  18. Like
    Sillycat1957 got a reaction from RonH in Durvalumab   
    Barb, a little late, but good for you! I hope every cell comes back cancer free!
    On another note, I finally finished my year long (very long) treatment of Durvalumab! On Aug 24th, Yay me! There were times I thought I would rather die. Don't fret y'all newcomers to the Durva Club 🤪 I can be quite dramatic at times! But all's good. I had a few hic cups along the way.
    I welcome you all to the club. It has helped me to navigate my journey quite well. I have a CT Scan and Bone Scan schedule at the end of this month, then I see my Oncologist on November 12th for the results. Happy to say I am off all pain meds and Xanax too. However, I am way too squirrely and think maybe I should be on some kind of anxiety med, also I was given Tramadol for pain, I hate it, makes me want to puke. 
    Michelle, even tho I gave my APRN and DR the info on Naltrexone for pain relief, they insist that it is for drug addition. But they are willing to refer me to a pain clinic. Unfortunately, they are missing the point completely. Ugh! My Onc feels my pain is cancer related so I should no longer be in pain WTF! Am I now cancer free? Does she know something I don't?
    Guess I will just wait for my scans and appointment in November 😁
    Have a great weekend everyone
    Take care
    Roseann
  19. Like
    Sillycat1957 got a reaction from Barb1260 in Durvalumab   
    Barb, a little late, but good for you! I hope every cell comes back cancer free!
    On another note, I finally finished my year long (very long) treatment of Durvalumab! On Aug 24th, Yay me! There were times I thought I would rather die. Don't fret y'all newcomers to the Durva Club 🤪 I can be quite dramatic at times! But all's good. I had a few hic cups along the way.
    I welcome you all to the club. It has helped me to navigate my journey quite well. I have a CT Scan and Bone Scan schedule at the end of this month, then I see my Oncologist on November 12th for the results. Happy to say I am off all pain meds and Xanax too. However, I am way too squirrely and think maybe I should be on some kind of anxiety med, also I was given Tramadol for pain, I hate it, makes me want to puke. 
    Michelle, even tho I gave my APRN and DR the info on Naltrexone for pain relief, they insist that it is for drug addition. But they are willing to refer me to a pain clinic. Unfortunately, they are missing the point completely. Ugh! My Onc feels my pain is cancer related so I should no longer be in pain WTF! Am I now cancer free? Does she know something I don't?
    Guess I will just wait for my scans and appointment in November 😁
    Have a great weekend everyone
    Take care
    Roseann
  20. Like
    Sillycat1957 reacted to Tom Galli in Durvalumab   
    Lindsay & Roseann,
    So you both have good news. How about that! Let's keep on shrinking down tumors.
    Stay the course.
    Tom
  21. Haha
    Sillycat1957 reacted to Tomm in Durvalumab   
    Barb     Great news! When I got my news last week I treated myself to a piece of chocolate cheese cake... give your self a treat for the year you invested in Durva.
    Grahame  ..  enjoy the wedding and the cake that goes with it . That's really fast good news on you progress.
    Lindsay ...Hope you get great CT result .. #10 already ..your on your way
    thanks everyone for the good wishes ..I hope you all enjoy the season
    Q:  What do you get when you combine an elephant with a fish?
    A: Swimming trunks!
    Q:  Why don’t oysters share their pearls?
    A: Because they’re shellfish!
     
  22. Like
    Sillycat1957 reacted to Grahame Jelley in Durvalumab   
    New article just out on Pacific trial
    https://www.jto.org/article/S1556-0864(19)33529-4/fulltext
  23. Like
    Sillycat1957 reacted to Lindsay in Durvalumab   
    Good morning! 
    I wanted to share my CT results with you guys. This was my first scan since starting treatment in April (I'm getting treatment monthly, so this was #4 for me, which I guess would be #8 if I was going biweekly) and my tumor is down to 1.3 cm. 
    I started at 5 cm back in December 2019 when they found it,  chemo and radiation took it down to 3.8 cm, and now I'm down even more. I'm so happy with these results! 
    I had hypothyroidism before starting any of this journey and my levels were jumping all over the place, but seem to be leveling out now which is good. No other side effects to really report aside from a sour stomach in the mornings which my onc is not too concerned with. Treatment #5 is on Thursday, then more waiting!
  24. Like
    Sillycat1957 reacted to Barb1260 in Durvalumab   
    Well another CT in the bag. Doc said go live your life and I’ll see you in November. 
  25. Like
    Sillycat1957 reacted to Grahame Jelley in Durvalumab   
    Great news Barb. Sitting in chair for # 10 today. Lesion shrunk +\- 50% ,mediastinal nodes reported smaller , mild radiation scarring . Physically doing reasonably well. Looking forward to daughters wedding next month. Bonus as at diagnosis October 2019 that was not a “given”. 
     
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