middlesister1

Good morning-

So happy to see you again and I was able to access your site. I can’t imagine having to go through treatments and have the worries about availability of meds and unrest. DO you have a treamtnet plan in FL?

Best wishes,
Catherine

Jocelyn,

Welcome to our group. Although my heart breaks when I hear about a your person being diagnosed with CC at such a young age.

If you haven’t yet, please read through the homepage for newly diagnosed

http://cholangiocarcinoma.org/newly-dx/

Although you’re correct in starting research yourself into available treatments ( I had to push for my mother), it’s VERY important to have your brother’s case evaluated by a multi-disciplinary team who are familiar with CC. We’ve had members who first were told they were inoperable until they went for second or even third opinions. And, my mother wasn’t operable, but has had wonderful success with radiation.

I’m also hoping by “bumping” your post again to the top that we may get some to chime in regarding how they got into trials.

Best wishes,
Catherine

Hello again.. since Marion encouraged me

Not sure if this is correct place to chime in again, but I have noticed that it seems for many things – even drinking contrast for a scan- they often give the same 2 large cups without considering if the patient is a 300 lb man or a 120 lb woman. My mother’s GP knows how sensitive she is to all meds and will often say she is prescribing only 1/2 or even 1/4 strength that she will for other patients. And, when we went through chemo with Dad, they started with the higher dosages as the standard and only after it was too harsh did they cut back. His ONC said it was almost always the case since Dad was older (83) that they tolerated the 75% dose better and statistically it was just as effective. I guess the thought is more is better, but if they went with the dose to begin with based on age/weight etc, I wonder if patients would have better success with being able to stay on the treatments longer.

Best wishes to all
Catherine

Dear Derik,

I am truly sorry for the loss of your grandmother to this cancer. However, the love your family had for her is a true testament to what a wonderful woman she was. Thank you for sharing with us.

My thoughts and prayers are with you and your family,
Catherine

Hi ,

The second time around, more fatigue since she did the oral chemo (xeloda) for 2 weeks before and after. And, a little soreness/bruising in the groin area. I am a bit surprised that the ONC spoke like that about it. Compared to chemo, Mom said she would do it anytime. It is done as a outpatient procedure usually. And, we were fortunate that the few months of fatigue have now given her years of treatment-free life. She still has her port periodically flushed and gets scans every 6 months.

Mom’s ONC was not very familiar with CC- we lucked out that the interventional radiologist took the lead and truly saved her life. That is the benefit of being where there is a team reviewing the case. Below is further info on Y-90. Can you ask to meet with the radiologist?

Great to hear the tumor marker coming down !

http://www.sirtex.com/us/patients/about-sir-spheres-microspheres/frequently-asked-questions/

Take care,
Catherine

Hi,

For us, the Y90 was a the perfect option. for Mom. Although she was fatigued for a month, it allowed her afterwards to go without treatments and live a normal life.

Best wishes to you and Rich-

Catherine

The wrapping and accompanying letter were special too- what a wonderful idea.