Topic: New Member

Hello, I'm Vicky Jones and my mother has CC. She was Dx Sept. 2011. My sister and I have been researching this horrible disease. The more we read the more discouraged we get. We need help with info and of course as with all CC patients our mom needs a miracle. Mom's Dr. Is Dr. Hsu at Duke University. She is currently taking Gym/Cysp, thanks to the Lord above her last scans showed the cancer as stable. Her blood counts have been low and she has had to miss some treatments. Any sugestions on what we can do to help build her blood levels will be greatly appreciated. We will be praying for all, please pray for mom.

Re: New Member

Hi Vicky,

It's nice to meet you but not under these circumstances. I am sorry to hear about your Mom.  My daughter, Lauren, has CC. She is now on just Gemzar and 5-FU. She was on a combo of Gem/Cis and 5-FU for 6 mos. During that time, she had a hard time keeping her platelets high. The doctor says that is very common with Cisplatin. Now that she is not on Cisplatin, her platelets are fine. We had read somewhere that Gatorade helped with low platelets and it seemed that every time she drank a lot of it her platelets were good. Her doctor would laugh at us every time we told him this. I don't know if it really worked or it was just a coincidence. I think the main thing that helped was to skip a week and let the platelets build back up. Maybe someone else has a magic potion. Good luck with your Mom's treatment.  I will keep her in my prayers.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: New Member

Hi Vicky and welcome to our extraordinary family but sorry you had to find us. We have a search engine at the top of the page and if you type in low platelets I have a sneaking suspicion many posts will pop up chock full of advise. Prayers going out to your Mom. Be strong, and please keep us posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

4 (edited by eli Wed, 09 May 2012 20:45:09)

Re: New Member

Hi Vicky,

Welcome to the site and sorry that you had to find your way here.

You asked about the low blood counts. You didn't mention which ones are the problem. Is it neutrophils (white blood cells) or platelets?

My wife completed 6 cycles of Gemcitabine/Cisplatin. The total of 12 chemo sessions. Her neutrophils dropped too low right after the first cycle. Our oncologist put her on Neupogen shots to keep her neutrophil counts up. She did 10 Neupogen injections in each chemo cycle. 3 injections after the first session of the cycle. 7 injections after the second session. Thanks to Neupogen, my wife completed all 6 cycles without interruptions.

Neulasta is a similar drug to Neupogen. Its effect lasts for a longer period of time, so it requires fewer injections than Neupogen. Ask your oncologist if one of these drugs is right for your mom.

Best wishes to you and your mom,
Eli

Re: New Member

Dear Vicky,
You are not alone. We are here for you. Keep us posted on how things are going. Remember it is not quantity of life, it is QUALITY of life, make each precious moment count. We are all praying for you. Stay strong and try to stay positive.
Hugs,
Roni
ronidinkes@yahoo.com

Re: New Member

Thanks to all of you for making me feel welcome. Mom is doing OK, she stays very weak. W  know  she is doing OK because of all the prayers, please keep praying. My sister and I are still in shock, we are holding out for a miracle. Eli mom takes neulasta after each treatment. It is both her white blood counts and her platelets that fall between her treatments. Pamela I will get mom some Gatorade and have her try that to bring her counts up. Again thank you all I will be praying for everyone. It's great talking to others who know what you feel like. I feel like our family was playing life on our own little baseball field, then one morning we woke up still playing our baseball game but some how the baseball field got changed to a football field.  We're still trying to play baseball on the football field. We're confused wondering how this could happen and we're still trying to figure out what to do about the whole thing.

Re: New Member

Vicky,

I love your analogy about playing baseball on the football field. That is such a great way to explain how it feels. Our family is also still a team, but we feel like we are also playing baseball on a football field. Not sure what to do, confused, scared because we don't know how it will turn out. It is normal to be in shock. I don't know if it ever really goes away. You kind of just learn you have to be strong and learn to deal with things. Make the most of every day and try to stay positive. Easier said than done. I know. I wish you and your family all the best. Please ask any questions you may have. Someone always has an answer.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: New Member

Vicky...your analyses in re: baseball field to football field makes much sense.  I can’t think of anyone on this site, who was prepared to receive diagnoses of Cholangiocarcinoma; neither is it something we could have ever imagined.  We are informed about the many things that could possibly lead to various kinds of cancers, but unless we are one of the few people with “possible” risk factors, we simply don’t know of this disease.  Unlike the “big” ones such as breast, lung, colon, or prostate, bile duct cancer never even comes up in conversations with our physicians. In fact, not only the patients and loved ones are shocked when the diagnoses is given, physicians often are also stunned.  Our PCP, in the numerous years of practicing medicine never had seen a patient with this cancer.  So, we try our best to be as inquisitive as possible, search out those physicians and centers "very" familiar with this disease and reach out to those, who can understand, support, and help guide us.  We realize that people experience varying degrees of responses to treatment, but we try to stay as positive as possible and hope to be in the upper curve of the equation. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER