middlesister1
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Matt, not for all, but for some we have heard about keytruda working wonders without side effects. I really believe you will be another. But especially if it shows it’s working, I hope insurance will cover. If not, do we set up a “go fund me” page for you?
Thinking of you and the family,
CatherineFrank,
Sorry for the late response. Listening is what we are best at. When I joined this board, I posted long topics and also reached out individually to members whose stories connected with me. Only thing I would have pushed for earlier (in our experience) is the genetic testing so if we need to apply to clinical trials, we had the information there.
Other lessons learned (again for Mom)- we should have had a port installed earlier for Mom and we delayed too long in going back for fluids during chemo treatments.
Besides “lessons learned” with this horrible disease, all I can offer is my best wishes., love and hugs.
Take care,
CatherineHi,
I grew up on Long Island, so realize there is a long distance between Buffalo and “NY”. I did the search and no hits came up for Buffalo (maybe Syracuse?) I also am so fortunate to have two sisters, so your being here makes me happy that you found us, but also so very sorry that you had to.
I think many have gotten second opinions remotely. Even if no one has information on Buffalo, can you chime in and give advise on best ways to get a second opinion from out of area?
Take care,
CatherineHi-
Welcome to our group Mom was also not able to have surgery with location, but did SIRT after chemo since she only had the one tumor and no mets. we’re at 2 years from diagnosis and treaamen
free..Do you have a team reviewing your care?
Best wishes,
CatherineDerin,
Thanks for checking in. We’ll try to focus on the good – shrinking tumors that are too small for trials. I wish you and the family many more years of feeling well and attending concerts together- that’s what life’s about.
(Belated Happy Birthday)
Take care,
CatherineKathy-
So very sorry not the results we all hoped for. I hope the trial can offer great results with minimal side effects.
Take care,
CatherineMaria-
Thanks for finally posting and officially becoming part of our family. I know when Mom was diagnosed, finding all posts – especially non-surgical patients- who were having longer survival gave come hope.
Good luck Kathy!
Best wishes to both of you-
Catherine
Matt-
Such wonderful news!!!! Now we just need the insurance company to agree. I wonder, if they turn down payment, can you resubmit if the drug shows it’s working?
Best wishes- so excited for you!!!!!
Catherine
Dear Bridgette,
Welcome! We look forward to many more clean reports and good news. Thank you for sharing.
Best Wishes,
CatherineHi- Me again- I posted below on the obituary website since I’m not sure if/when Duke’s family will come here, but decided to share here as well. Suggestion – I know Julie (Iowas girl) posted already, but maybe it would make Aimee and kids feel comfort to see the outpouring of love and how many people Duke touched here. if they also post directly on the funeral home website.
http://behmfuneral.tributes.com/obituary/show/Charles-S.-Orogvany-102874542
Dear Aimee and Family,.
I’m another one of the many who never had the opportunity to meet Chuck,but knew him through cholangiocarcinoma.org. Nothing I can write can start to convey how many people he touched, and will continue to, who are patients or caregivers for CC. “Duke” brought something special to our group. He made us laugh, cry, feel, and be informed,
He told us to look at every day as a miracle and a treasure. And, did I say he made us laugh?
“Really – not having to shave my legs? Be still my fevered heart! Never considered that one. Will I be a trend-setter on the beach or what?”
His love for family was so evident and gave even those of us who were not patients words of wisdom and love:
“You and your husband are best friends and lovers. Grab that and hang on for all you are worth. At the end of the day, after your glass of wine, it’s just the two of you and God.”
Thank you for sharing him with us. I know his spirit and love will live on through your family, but he will also live on in the hearts of so many others he has touched.
My heartfelt condolences are with you,
CatherineThank you Marion. A tremendous loss to our family, but I will try and focus on how one person was able to give so much to so many.
I hope Duke’s family at some time in the future visits here and looks back on his posts that informed, consoled, and gave hope to so many. And, he reminded us to live, love and laugh. and treasure each day
Love to all,
CatherineCongratulations! I’m so happy that you are getting the recognition you deserve for helping all of us.
Matt,
Thank you for checking in. I’m going to be the optimist (easy for me to do) and focus on the no measurable disease.
Wishing you the best,
catherineWe are all here hoping that it’s not a recurrence (which you can deal with), but a minor hiccup. Let us know how the scan results come out.
Take care,
CatherineDear lucky. This is the first time I read the 12 weeks but it may be that not all details are posted by members. My mom’s onc did stress she wanted to do no harm and warned that chemo was not without risks. From experience, but not a medical opinion, the gem/cis was very hard for mom to tolerate when not fully recovered from surgery. However we were in a position where surgery was unsuccessful and we knew the tumor was still there so she pushed through treatments once they adjusted meds for side effects. I hope others chime in as well.
Best wishes, Catherine
