mcwgoat

I’ll definitely keep you posted Gavin. I’m on Paclitaxel right now and CT scan last month showed I’m stable. Based on that, I don’t know if I would be eligible for this trial. Overall I’m doing pretty well but always have that fear of what happens when current treatment stops working.

I will discuss with my ONC. My next CT scan will be the beginning of December and I’m already having fears it will show growth.

Mary

How many more stories are we going to hear like this before our government officials do what they’re suppose to do – LISTEN AND CARE FOR THEIR CONSTITUENTS!!!???

On the other hand, how many stories like this are we NOT hearing about? I believe there are many people that are affected by this shutdown – people that were just told they were eligible for a clinical trial but hadnt started it before the shutdown of the government. Now their lives are on hold. I wonder how a Senator or Congressman/woman would feel if it was them or someone they love?

This is heartbreaking! We all need to write to our representatives and tell them this shutdown needs to end NOW. Peoples lives depend on it ending.

I’m not a political person but this is just too personal for me to not anything.

Mary

Thanks for this info Gavin. This may be a trial I’m eligible for. I’ll discuss with my ONC on Friday.

Mary

Clare,

I couldn’t agree with you more. We need early diagnosis of CC in order to have a better chance of survival. It is sweet that your husband is doing the run to raise money for this terrible disease. There is no better way to honor your sister.

Thinking of you.

Peace,
Mary

Dear Oceangirl,

I’m so sorry to hear of your brother’s passing. There have been a few posts recently with the sad news of yet another of our loved ones dying of this horrific disease. I feel for each and every one of you.

Please know, in your time of mourning, that you and your family are in my thoughts and prayers. It breaks my heart that your little nephew will have to grow up without his Dad.

Be kind to yourself and take the time to mourn your loss. I hope, in time, happy memories can ease your pain.

Love & Peace,
Mary

Shame on the US Government! As the Senate and Congress continue to receive their pay, other government workers are losing theirs.

Sadly, those fighting for their lives (as noted in Marion’s link above) are not able to enter clinical trials because the NIH is forced to put clinical trials on hold while the people we voted for hold us hostage by refusing to negotiate for the good of the people they represent.

Let’s pray they will come to their senses and end this shutdown soon.

Mary

Oceangirl,

I am so sorry to hear that your brother is not doing well. I’m sure that hospice will provide the comfort he deserves at this time. I hope that you all get to spend some meaningful time with him.

It’s hard to know what to say at this time. Please know that you and your family are in my prayers.

Peace,
Mary

Hi Elsy,

I live in Basking Ridge, NJ and would gladly help, if my schedule allows, in organizing your fundraiser. I will definitely attend to help bring awareness to cholangiocarcinoma. It would be such a great tribute to your grandmother and she will be there in spirit, so proud of you.

Take care,
Mary