1

(3 replies, posted in General Discussion)

Lainy. Thank you for your reply. Orginally we had 2 onc opinions. We have stayed with the one dr. Because we were seeing such good results. We did get another opinion with her onc radiologist. The onc chemo and onc radiologist worked together and decided to do the cyber knife.  I thank you for your comments and will find another dr. For 2nd opinion. 

Just curious about the tumor marker level CA19.9 at 16,000.  Are there any suggestions of what this means and is this a typical number and how high has anyone seen see this  number go to.  I understand normal is 37.

2

(3 replies, posted in General Discussion)

My mom was diagnosed 1 year ago with stage 4 CC. She was on Gemzar/cisplatin. This showed to be too hard on her kidneys. She then did a few months of xeloda while preparing for her cyber knife. She is now on Gemzar/oxiplatin.     We just got the results back from her CA19.9. When she was first diagnosed her level was at 11,000. They went as low as 2400 while on gem/Cis.  It is now at 16,000. She is not jaundice.  I understand what this means but was curious if anyone had similar experience and what was the outcome.  We are not sure if we should continue chemo or even if we can. This new chemo she is on has lowered her platelets to 17,000 and her hgb. is 8.2. Just so confused what to do next   

I would appreciate any comments , advice or even information on what we are seeing and what we should be prepared for. My mom is 79 always a pillar of health until this recent diagnosis.

I wonder why after just a 4 rounds of chemo treatments they wanted her to stop for 6 weeks.  My mom did the gemzar/chis for 6 months, the only reason she stopped was because the chispatlin was effecting her kidneys.  This was unfortuanate because this mixture was very successful at shrinking her tumors.  We were forced to take time off but during this time we were getting prepared for the y-90 radiation.  Untimatley she was un able to do this again because of her kidneys.  She just went thru 5 series of cyber knife, so easy.  And now she is on Gemzar/oxiplatinm.  We are waiting to get the results from the CT scan to see how this has been working.  We are very hopeful that the radiation will take care of the tumor in the liver, but the oxiplatin is proving to be too strong for her blood counts.  Her platletts went down to 19,000, she is going for her second platletts transfussion this week.  My sister  and I are donating our own blood and platletts so that she can get them from us as often as the doctor feels necessary. BTW my mom is 79 and she keeps plugging away, your mom is younger and i pray that she gets better.  Heck 70 is the new 60...  and if she is anything like my mom, and she sounds like she is, she has a lot of fight left in her. 

As far as your mom weight loss, please try Megestrol, this was a wonderful suggestion from someone in this group.  ,Not only did her appetitie increase, and she gained back her weight but as important she now enjoys her meals again.

Mike,

First, please stay possitive, there are so many options, the more I think we are at the end of the rope then we learn of something new.  My mom has been getting chemo for 10 months, then we learned of the Y90 thru members of this web site. Unfortunately she could not do this because of all the CT scans that were required and we were fighting her low kidney levels.  We just finish the cyber knife, this was such a easy process and very little prepwork involved.  The success rate for shrinking the tumor in the liver is very high we have been told.   

We did this procedure last month, we will find out in 3 weeks the results.  I will make sure to post this immedialty. 

The Radiation oncologist we used is Dr. Ana Botero, Memorial Regional Hospital in pemboke pines , florida.  954-844-6808, she is amazing.

5

(12 replies, posted in Nutrition)

my mom only weighed 127 pounds before she was diagnosed, so this was a major concern for us as she was so thin already and could not afford to lose any weight.  After a few months her weight dropped to 112.  She just had no appetite.  We use to always go out and enjoy a nice lunch during our shopping sprees.  So her quality of life changed as well because we enjoyed our lunches and dinners.  Someone from this site told me about a perscription to increase your appetite.  This was amazing, not only did she put on her weight, she is enjoying her food, eating like a little piglet.  The medication is called megestrol.  I don't understand why the doctor never recommended this.   Please check  with your doctor, it worked miracles for my mom.

6

(2 replies, posted in Introductions!)

As I read so many of your messages I realize that we are not in this alone, although sometimes I feel we are the only family effected with this horrible disease.  Here is my story:

My mom is a very healthy, fit, and an active 79 year old woman who has never had any medical problems. My mom’s first sign of what we now know is cholangiocarcinoma, was constipation and bloating.  She complained about this for a few weeks, I gave her over the counter meds and told her that as we get older our system changes.  She was very concerned because she has never had these problems before.  After unsuccessful attempts to correct her problem she went to her doctor. She has been going to the same doctor for over 25 years, and it was her doctor who had the foresight to run blood work on mom, she ran a CA125 for ovarian cancer.  This came back very high, which began a series of test.  Even thought my mom’s cancer spread and was not found until it was stage 4, if it were not for her doctor to run this initial blood work she would have been jaundice before we knew anything.  To this I owe my mom’s life to this doctor.

Within a few weeks my mom diagnoses was confirmed by a series of CT scans, biopsies and PET scans.  Her cancer originated in the bile duct, and spread to her liver (klatskin tumor 4.7 cm) left hepatic lobe.  There are over 15 other areas that it spread to within her stomach lining.  Stage 4 and it is inoperable. She has now gone through 11 chemo treatments, 2 weeks on 1 week off with Gemzar and cisplatin.  The first CT scan after a few months showed little shrinkage but some, the second CT scan a few months after the first showed better shrinkage of all cancer cells in her stomach, but not in her liver. We are having problems with her blood levels because the chemo is so strong, she had to get a blood transfusion last month. 

She is so amazing and strong.  She is handling everything so well and has the most positive attitude. She is holding me and my three sisters together; we are getting our strength from her so that we can be strong for her and support her thru this. 

My question is at what point I start going to other hospitals that specialize in this particular cancer, consider alternative medicine, check into clinical studies etc.  The doctor she is seeing in the Fort Lauderdale area is great, and right now we are seeing a decrease in her cancer.  I am just not sure how much more to do now, I keep hearing the words “quality of life”.  But I want my mom to live even if her quality of life for the short term is to save her life and to do whatever it takes.  I also wonder if anyone has had any good response to certain types of food and nutrition that help keep blood levels high. She is also losing too much weight; she weighed 127lbs now she is down to 114.  Any suggestions on weight gain.