mbachini
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Dear Georgia,
I too, welcome you to these discussion boards but am sorry you are here. I feel the love you have for your mom, and I recognize the frustration of this stupid cancer. Please keep us updated on her progress and know we are here to support you and your mother in any way we can. Please take care.
Melinda
Thanks all, it was definitely my privilege to represent the most amazing people in the world!! I can’t help but be biased to cholangiocarcinoma patients and care givers!
Melinda
Hi David,
I feel your pain. I loved my job, and I miss it terribly. I was a paramedic. Unfortunately, I could not keep up with the long shifts and the chemo brain scared me, I didn’t feel like I was able to make split second decisions the way I used to. I had hopes of returning but for now this is my new reality. I sometimes have a small pity party for myself, as I feel sometimes a part of me is missing. I just had to change my mindset and choose a new direction. I focus on how grateful I am for the time I have spent at home with my children and the passion being a patient advocate has brought me.
Them money side of it stinks but we tightened up our belts, and honestly I don’t feel deprived. You will know when you are at the point for that decision. Sending tons of hugs and prayers your way!
Melinda
Hi Jennifer,
I want to welcome you to the discussion boards, and good job on being a proactive advocate for your mother! I would suggest posting your introduction again under the introduction section so possibly others will see it and be able to chime in with some advice on surgeons in that area.
I highly recommend going ahead with a second and possibly third opinion. Always better to have more expert advice. Key being expert in cholangiocarcinoma. Good luck and please keep us posted.
Sending hugs and prayers your way.
Melinda
Dear Nancy,
I too, would like to express my sadness for Ron’s passing. Prayers for strength, comfort and peace are being sent to you.
Melinda
Hi David,
I always tell people to give NIH a call. A phone call never hurts anything and they can tell you what is all available in regards to trials. Unfortunately, for the trial I am in, you do have to fail first line of chemo, and having an internal stent in place disqualifies you from the trial as well because the risk of infection is so high when your immune system is depleted prior to cell infusion. Here is the link to the trial, plus the new addition of pembrolizumab, and pembrolizumab alone. I still recommend calling to find out more information and if anything has changed.
https://www.clinicaltrials.gov/ct2/show/NCT01174121
http://clinicalstudies.info.nih.gov/cgi/detail.cgi?A_2010-C-0166.html
https://clinicaltrials.gov/ct2/show/study/NCT02628067#contacts
Best wishes to you! Sending hugs and prayers your way!
MelindaGlad you are feeling hope again! That is all we ask for as patients…..a little hope for the future! Looking forward to hearing more info on the immunotherapy trial. Hugs and prayers headed your way!
MelindaGreat news! I also have “dead” tumors in my liver…….as long as they stay dead, they can hang out all they want!!!
MelindaThank you Carl for the information and please pass on to your daughter how grateful I am at her efforts to help make a difference for patients and families like ours! Truly grateful!
MelindaGary…..your wife is right in her suggestions! These suggestions were made by several people throughout the conference and have already been discussed for next year!
By the way…..thanks so much for autographing my book!!!Dear Cindy,
I am so sorry chemo has been hard on you. It was hard on me also, I did not do folfox, but have heard it can be rough. Hang in there and continue to rest when needed, it is what you need right now. When is your next scan? How long have you been on this trial? You CAN DO IT, you ARE DOING IT! Sending hugs and prayers your way!
Melinda
