February 2, 2010 at 8:06 pm #33689
A one year anniversary from a Whipple is not something to sneeze at. My husband is at 4 1/2 years. Wishing for the best for your mom, never hurts to dream!February 2, 2010 at 7:52 pm #33688gavinModerator
Thanks for the update on your mum. I also like your dream and I hope it comes true for you and your mum. I am sending you both loads of positive thoughts.
My best wishes to you both,
GavinFebruary 2, 2010 at 2:27 am #33687mlepp0416Member
Mom’s Daughter: Keep on dreamin! Prayers from Wisconsin are coming your Mom’s way!
My husband Tom will be starting on Chemo as soon as they can get the liver stented. You can read about his journey with CC under my login name mlepp0416.
His bilirubin continues to go lower, 9.1 this weekend when he was in the ER for fever.
Prayer is an amazing thing! Attitude is everything.
Go with God and KEEP KICKIN’ THAT cancer
MargaretFebruary 2, 2010 at 2:19 am #33686
I like your dream. As Kris had said it so well: be realistic and positive.
All my best wishes,
MarionFebruary 2, 2010 at 12:52 am #33685
During the past couple of month, my mom had to have a couple of transfusions due to a low red blood count and now she is having shortness of breath. She is not able to do the things she regularly does. She is just so tired. We went to see a cardiologist today and they are going to do an echocardiogram. They decided not to put a port in because they felt she was too weak with the shortness of breath. She has a pick instead.
She is now in her first round of Oxilplatin, Leuvorcin, and 5FU. I know this is standard, but we just have to pray it helps.
She is coming up on her one year anniversary of diagnosis, she had a whipple in March, then began chemo in June. She’s had six months of chemo and they are not planning on stopping unless she decides to. If the chemo shrinks the lymph nodes down and only a few are left they can operate on her. That’s our dream!!!!
We are grateful that she has had this much time with us and it is her strength that keeps us going. This whole disease is maddening…….January 8, 2010 at 1:40 pm #33684
Hello Mom’s Daughter. Just what we don’t need…another frustration…and from the family, yet. You know by now that 1 person is the Caregiver in most of the cases while the rest go about their own ways. It sounds like you are very close to your mom so could it be the others are a tad envious? You are doing such a great job, a job no one else wants and if it was me I would just tune them all out. But, that’s me. It’s a hard call on the babysitting. That could very well be the best thing for her. Something to look forward to. Kids are amazing and can make you feel like you are so much better. What about decreasing it a day and on that day…daycare? Good luck!January 8, 2010 at 4:27 am #33683
Well we got new CT scan results. Although she is still basically stable, her lymph nodes are increasing minimally in size. Her oncologist, Dr. Lenz, feels that although the gemzar and xeloda have stabalized her lymph nodes for the most part, he is changing her regimen to Oxilplatin/5FU/Leucovorin to be done at home. She is having a port put in next Tuesday and starting treatment. Does anyone know what we should expect? My mom is being brave, but I know that she is terrified.
This has been extremely stressful for my two brothers and two sisters. I have been the primary caregiver and have become protective of her. My sister still has her babysitting her three young daughters at least 3x per week afterschool so she can work! Although it’s great for her to be around her grandchildren, she should not have to care for them. My mom would never say no, she always tries to help everyone. There are many other issues and it’s just sad that this is tearing us apart even more, although we get along, we’ve never been close as a family. That has always bothered my mom so we are trying, but there is too much sarcasm and passive-aggressive behavior. Just sick of it.December 18, 2009 at 3:52 am #33682
I am so glad to hear from you. Dr. Lenz since 2004… that’s wonderful. We were just in today for chemo and had a visit with Taline. God really does work in mysterious ways. We originally thought that my mom would be gone soon and Dr. Lenz really did not offer much hope, but here we are 9 mos later and hanging in there!
Dr. Selby was an angel for us. He speaks fluent Spanish which my mom felt more comfortable with. The empathy that man showed was remarkable given the circumstances. I guess having lymphoma will do that to anyone. we will never forget him.
Thanks for writing!
Happy Holidays!December 16, 2009 at 12:11 pm #33681lalupesParticipant
Good luck with your Mum’s recovery, Mom’sDaughter.
Hello, JoniAndJoe – a very big welcome to you, too!!
JuliaDecember 16, 2009 at 7:56 am #33680barbMember
Mom’sDaughter, wow, i can hardly believe my eyes…. dr. selby is one of my surgeons and i have been under dr. lenz’s care since 2004. i had an appointment with lenz just this past thursday and saw selby the last week of october. the past 2 weeks i’ve seen several “new” docs due to increasing pain and increasing ca19-9.
ohhhh, on top of that…. i’m from glendale as well. what a coincidence.
sorry to say, but i don’t post here very often… it seems i’m always distracted by other things, but this site is the BEST and this cholangio family is truly amazing.
good luck to you and to your mom.
barb hDecember 14, 2009 at 10:49 am #33671devoncatMember
Hi Moms Daughter and Joni,
Welcome to the site. We are like a little family and we do our best to help and support one another along this hard and bumpy road of cc. Information is key and there are several people on here who are great locksmiths. I bet you figured out Marions is one of those people. we have long term survivors, patients on drug trials and even our own librarian so information is usually here if asked.
As to what after chemo….I am finding that out now. I am getting a different chemo cocktail and they are talking about radio frequency ablation for me. We will see.
And Joni…NOBODY has an expiration date stamped on their foot. Check Joe, I bet he doesnt have one. Listen to the doctors, get things in order, then get ready to fight like a demon. People surpass drs expectations all the time. And dont worry about the crying. We all do. If I only had a nickel for each tear, I could solely fund this cancers research for the next hundred years! I find crying in the shower is the best place for me. And when you feel down, you can always come here to a place where everyone understands.
KrisDecember 14, 2009 at 5:24 am #33679
JoniandJoe, thank you for writing. You will find that it helps tremendously to get things out. I was feeling very frustrated and alone and then I got the courange to write about it. I have screamed at the top of my lungs on several occasions and it really feels good!!!
My mom has stage 3 extrahepatic bile buct cancer. It has spread to some lymph nodes, but no other organs. Please don’t give up hope, hope is the most important thing we have. How is Joe doing mentally? It’s so hard to keep your spirits up, but it’s so important for his sake.
I think that since this is such a rare disease, it’s important to find doctors that have experience with this. My mom originally had a plastic stent put in too, but they took it out when they did the whipple. They basically cut out the entire bile duct, duodendum,and gallbladder, then part of the pancreas, small intestine, and stomach. Then, they restructured everything to work again. It was a tough recovery, but she is doing very well now. They think they got it all, but you never know. Now her lymph nodes are enlarged. We will have another CT scan in a few weeks to see where we are, but in March it will be a year that we thought we would not have with her. What a blessing!!
Good luck to you and I hope this helps! Take care!!December 13, 2009 at 9:12 pm #33678
Hi Joni and Joe and welcome. I am so sorry about the turn in you life. My husband was 73 when diagnosed 4 years ago. And these are the Golden Years, yes?
A Whipple surgery occurs when the CC is in the bile ducts, Teddy’s was in the bile duct valve. It was not in the liver. You can look up Whipple on the web. For a lot of answers we have a search engine at the top of the page and you can just type in a word. Teddy had never been sick a day in his life. He even survived Korea.
When the diagnosis is first given we are all scared to pieces because who ever heard of this before? We advise people to read up as much as they can and to ask many questions of the doctor. Once you have read up and a plan is in place your load tends to lighten just a little.
It sounds like you really could use some extra hands there. Is there family that can help you?
Then, you need to make a list of questions for the doctor so that you remember what you want to know at your next meeting. For us to be more helpful you need to know what the doctor is labeling Joe’s CC. Then you want to ask the doctor if he has treated this before?
We do not listen to an expiration dates!!! Nobody really knows and we have people on here already surviving 2 years past any given dates.
Finally, have you thought of a second opinion? We highly recommend those to see if something else may be out there that could help.
Take some deep breaths and you definitely need some time to yourself. I used to get in the car and turn on MaMa Mia and sing LOUD until my throat gave in. It was very cathartic for me. You will also find pounding away at the keyboard helps relieve tension. I feel for you as I remember the bag changing and the stents and everything else and it felt at times like I was a Medical Robot. But know what? Here we are 4 years later and somehow you just get through it.
Please keep us posted on Joe and let us know how you are doing as well.December 13, 2009 at 9:04 pm #33677
Joni…Hello and welcome to our little group. We are here to help, listen, and share and I am glad that you have found us because, you have come to the right place. Everything about this disease is difficult especially, since it likes to appear out of the blue without any prior warning. Where are you located? There may be someone near you from this board who would love to communicate with you or, possibly share some specifics for your particular area which may be of benefit to you. There is a posting called: Caregivers Bill of Right something; you might want to look at. Please, let me know if you canDecember 13, 2009 at 8:50 pm #33676
Momsdaughter……You are in excellent hands with Dr. Lenz and with Dr. Selby. Both are highly experienced with this cancer and are up to date with new and developing treatments and, that should help you feel at ease. I would assume that when and if cancer activity returns that Dr. Lenz will switch to another regiment. I am so glad that you have joined us and am wishing for continued success for your Mom.
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