middlesister1

Dear Bob,

I agree with Lainy; great results and lots of hope. I wish you continued success, and many great future reports too.

Best wishes,
Catherine

Dear April,

I am so sorry you were diagnosed with CC, but as others have said, you are having good results already and it is apparent that you have a husband who is there to support you.

The good news is that over the last few years we have seen many advances in treating CC. My mother was also inoperable, but doing well 3 years after diagnosis. I looked forward to hearing about your continued success.

Take care,
Catherine

Dear Julie,

This is really lousy and my heart breaks for you. I’m sorry you’ll have to, but I know by Tuesday you will have done your homework and have your boxing gloves on and ready to fight.

Thought s and prayers are with you,
Catherine

Dear Julie,

I am so sorry you have to face this after you’ve been through more than your share of Yuck. Fingers are crossed that you get to Mayo tomorrow and they can fix you up.

Lots of hugs coming your way,
Catherine

Dear Danielle,

I am glad you found us but truly hate when someone so young is diagnosed with this disease. However, my mom who was 73 at the time was able to tolerate the Gem/Cis, so I’m hoping it will be a piece of cake for you. The first cycle was the hardest, but then they adjusted her fluids and meds (added steroids) and she was able to go without anti-nausea meds at home.

There is a chemo therapy topic on the discussion board, and you might also find the below conversation of help; it’s pointers for first day of chemo.

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=13069

Best wishes,
Catherine

Hi Carla,

I am so happy to hear your report. I think we’re in the same place. My mother also has some dead/necrotic tumor, but the ONC no longer reports the size (it was originally 4×6 cm) since CT and PET show no viable tumor. After the first Y-90 treatment, it did shrink, but the CT and PET still showed viable tumor. We then went for a second Y-90 and although there is still a mass, it appears dead- the CT shows no uptake at PET showed no evidence of disease. It has been 2 years since last treatment. My understanding is that it will take a long time for the dead tumor to dissolve in the body. If it comes back (I used to say when- but now have hope it may not), we will look for a second opinion since there have been many advances However, as our ONC and IR tells us, there is nothing to treat at this time, and nothing to biopsy for genetic testing, so we are not going for second opinion until there would be something for them to evaluate.

We’re at 6 month scans now, with next coming up in Jan.

Best wishes,
Catherine

Bonnie,

I hope for options to be presented on Monday that give a plan for if not a cure, a way forward. With this cancer, we are told that there is no sure besides surgery, but there are more who are starting to survive with CC as a chronic disease.

My Dad’s lung cancer has spread to his pancreas. He is too weak for chemo, so we met with hospice last night. It was a meeting we were dreading, but made us feel better. They will ease into it with a nurse visiting once a week, and they may have a chaplain visit. Also, Mom seemed open to a volunteer maybe sitting with Dad for an hour a week so she can take a walk. They said they try to match the volunteers for respite care with the patient, so Dad will probably get a vet to come visit. It will give them 24/7 access his team. Being on hospice doesn’t mean they can’t leave the house and can even take a vacation if Dad feels up to it.

I hope Monday goes well and will be thinking of you.

Take care,
Catherine