middlesister1
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Marion-
Just to expand on what you said- when we did not know what type of primary cancer Dad had, I received below:Thank you for your interest in our Guardant360 test. I am sorry to hear about your father. Unfortunately our test does not diagnose the cancer type, however depending on the findings, it could help his oncologist determine best course of treatment without the biopsy. You should have received an automated email with our patient brochure. I would suggest discussing the option with his oncologist and see if they are willing to order it for him. Feel free to have the office reach out to us if they have any questions.
Best regards,
Kim Hallam
Client Services Supervisor
Ph: (855) 698-8887In our experience, they were wonderful in getting the kit for blood draw and mailing to Mom’s ONC. However, I wonder if for some of the clinical trials that require specific mutations if they would accept the genetic info from the liquid biopsy ( I hope so).
Catherine
Dear Kay,
Welcome to our group. I’m sorry your lives have been turned upside down. However, it sounds like you’re doing everything possible to get the CC under control. And, many here were also given the grim survival statistics and have far surpassed them. I hope the treatments continue to keep the positive results coming.
Catherine
Doona-
So happy to hear the great news but so sorry they put you through the worry.
Take care,
CatherineMaria,
My mother had the workup done by Guardant. However, by the time the blood was drawn, she had only “dead” tumor so I’m not sure how accurate it was. Also, we did not look over results to look for actionable markers.
However, I will say that the company was very willing to reach out to Mom’s doctor. They were also very responsive by phone and email. And, they had been willing to accept whatever insurance paid as cost- I’m not sure if they’re still doing it.
https://www.guardanthealth.com/
Best wishes,
CatherineDear Tiah,
I wish for successful surgery, but if some reason they can’t do it, the radiation also sounds very positive. We were heartbroken when they closed my mother back up, but the radiation has given us over a year with her still feeling great and treatment free.
Best wishes,
CatherineDaisy-
Wonderful news!!!! My Mom’s dead tumor is still there on the scans as well. It was great when she had a PET and nothing lit up (we always worry radiologist is missing something).
Is plan now just to settle back and periodic scans?
Take care,
CatherineHi,
It sounds like a very good day- I love to hear about those. Very exciting about the immuno therapy possibility. I’ll keep my fingers crossed and look forward to hearing more.
Best wishes,
CatherineSo far I’ve only watched the patients’ stories and was SO impressed. Things they all shared in common was the need to get second opinions, be a strong advocate for yourself, and make sure you are at a major cancer center which has experience with CC. I often pass along this advice, but it was evident in the 4 presentations that the presenters were all alive because they took control and pushed for options. I was also very impressed to hear that there were 120 online listening in addition to 90 patients in audience. What a great turn out!!!!!
Thank you,
CatherineDonna,
Best wishes coming your way for good scan results. I am surprised that it’s been a year; it seems like a long time.
take care,
CatherineDear Nancy,
I’m very sorry to hear about your loss. My condolences to you and Ron’s family. Although many will get hope from the 8 years, I still wish it could have been longer.
Take care,
CatherineDear Chris and Laura,
Welcome to our group. 43 and 2 small kids I’m sure kept you busy before this diagnosis. I am very sorry you had to find us.
My mother was/is treated down the road at UMD. However, if it returns, I think we will visit JHU for a second opinion. She went through 3 cycles of Gem/Cis, and although the side effects were better after the first cycle, she was tired and had some “chemo brain” throughout. You are much younger (she was 74 then) but I can see where work would be out of the question for many. My father is being treated with Carboplatin (different cancer) and the nurse told us not to worry that it was not nearly as harsh as Cisplatin. You are receiving a VERY strong chemo cocktail and I hope it continues to give good results.
We are seeing many more joining clinical trials. When you go to our clinical trial section, they have stickied the important info and the ones where we have board members enrolled.
Best wishes to you and your family,
CatherineDear Patricia,
The “one nasty diagnosis” made me think of a discussion I had with my mother yesterday. In 2013, when first diagnosed, she looked online for info, but once her surgery was unsuccessful, she left the online searching to me.
The other day she saw my FB post for World Cholangiocarcinoma Day and must have started clicking links because during our discussion she asked he to confirm that hers was the intrahepatic CC. When I did, she said that “boy this is a really bad cancer- I had forgotten how bad.” So although it’s a nasty one, some (not enough yet) are fortunate to being living with it and still have a good quality of life.
I hope your family also gets to the point where they can forget what a nasty one this is; the statistics don’t tell the story for all.
Welcome to our group,
Catherinesorry Lainy-
this one should work if other doesn’t, and there is the facebook link to share at the bottom.
http://worldcholangiocarcinomaday.org/
