cherbourg
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Thanks for all the messages and helpful links. Apparently the diladid was the culprit and she is much better.
You guys are the best and the Cardiologist is impressed *grin*.
I’m taking it 5 minutes at a time and then doing five more!
Hi Donna,
I sent you an email regarding my mom’s experience with the nexavar which so far as been positive with no side effects. She is on week three of the Nexavar.
In regards to itching try to stay away from any products with perfumes or artificial dyes.
Aveeno baths are a good one to use.
Hi Toniak!
My Mom has this awful disease, you can read our story under introductions (Cherborg)
I am a Cytologist (Basically I diagnose cancer as a profession).
Here is something I wrote down years ago and it still gives me great comfort even after diagnosing my Mom.
“I believe the way you encounter life is the way you encounter cancer. The illness will not change your personality nor will you become another person. However you are offered the chance of putting a different order in the priorities of your life.”
Your grandmother sounds like a remarkable woman and from reading your post it appears she is leaving a wonderful legacy behind in you.
It does help to write your frustrations down or I tend to yell alot while alone in the car…*grin*.
Respect your grandmother’s wishes. These are some of the things she is TRULY in charge of right now. Having cancer means losing control on so many fronts. It’s such a scary word.
Be kind to yourself as well. Try and take advantage of as much quality time as you have together. Above all …..LAUGH! It can be about anything. My Dad and I are convinced that “chemo Brain” is really a contagious illness…lol
I have a close friend in the last stages of colon cancer. He has been collecting “cancer jokes and humor” for the last year. Not to eveyone’s taste but it keeps him in stitches and all of us laughing.
Remember above all………….savor every moment.
Just some random thoughts – hope some of them may help. You and your family are in my thoughts and prayers………..
After reading your post I stopped and said a prayer for you and your family. Here are a few of my favorite verses that may give you hope and peace:
In the day when I cried, thou answeredst me, and strengthenedst me with strength in my soul.
Psalm 138: 3
“I will never leave you or forsake you.”Hebrews 13:5
“Do not fear, for I am with you; Do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, surely I will uphold you with My righteous right hand.”Isaiah 41:10
While this is very hard, you and your husband are giving your children and their families a very tangible gift of learning how the love of God, family and friends can help us face the worst times of our lives.Hi Sam,
So sorry to hear about your brother but you will be a godsend in how you will be able to help.
My mom has cc and I suggested that she and my Dad see their attorney. They drew up a durable power of attorney, a medical power of attorney and their (can’t think of the name of it but it spells out end of life options such as feeding tubes ect….) My parents gave me power of attorney and when I go to get copies of medical records, scans or whatever I just show the copy of the document. These days most CT, MRI’s and other reports are all digital so I just get the CD of them. The first copies are free. Our oncologist usually hands me a copy of the current blood work before we go to the chemotherapy room. Mostly it’s just thinking to ask and having the documentation that says you are the patient representative.
This type of behind the scenes work will keep your brother from having to deal with lots of redundant paperwork.
Hospitals have to work under HIPPA guidelines so they have to be careful in who they give results to. They usually aren’t being hard to get along with it’s just government regulations that they have to follow.
Remember you are his advocate. Don’t be afraid to speak up, ask questions and keep asking until the answer is in a form you can understand. Every business has it’s own language and it’s no different in the Medical field. Unfortunately you’ll have to learn a language you didn’t want to! My parents are of the generation that believes if a doctor wants you to know something, they will tell you. I’ve had to reeducate Mom and Dad to the reality that they are paying for a service and they should demand the best.
You and your family are in my thoughts and prayers. Your brother is unlucky in that he has cholangio but wealthy in the love of such a brother as you.
Let us know if we can help……..
Cherbourg
Welcome Terry.
I’m so sorry we are all meeting like this. My mom was diagnosed in May of this year. I had been lurking on the site and just recently started posting this week. You can read my story under introductions.
This is an excellent site for support, information and questions. I believe God led all of us to come here.
My mom is going on Monday for her 4th chemo assuming her blood counts all look good. So far she has been doing very well. She is on Gemcitibine (Genzar) and Oxiliplatin. She receives a small bag (takes about 30 minutes) of Zofran and dexamethazone which is to prevent nausea) Then we do a 2 hour drip of the oxiliplatin and then 30 minutes of the Gemcitibine.) All in all it takes about 3 hours. My mom is 76 and has gone to work the next day each time. We are supposed to add Nexavar to the mix this coming week. My mom’s cancer is inoperable and she has lung mets as well.
We received excellent information about the chemo and the possible side effects from the nursing staff. It’s overwhelming at the time but they are great at answering questions and sent us home with great information. (Tons of it!!!) I would suggest having someone with you to hear the information and look over all of the handouts when you get home. There are great tips in how to prevent side effects. One of the things we were told is to take care of your mouth and gums. Mom rinses several times a day with salt water.
Ask lots of questions! There are no dumb questions! Keep a notebook so you can jot down anything that comes to mind.
I made a notebook for my Mom and Dad to carry with us each time we go. There is a sheet that can be xeroxed with a list of her medications. You will always be asked what you are taking. This is an easy method. Just hand the nurse the sheet. My mom has a port so that makes chemo much easier. In the notebook I have an envelope so that Dad can keep mileage, parking receipts and lunch receipts…. remember lots of this will be tax deductible. We keep current copies of her recent blood work and appointment cards. After we get home, Dad staples the day’s receipts to the printed appointment card and drops everything into his medical file for taxes and the accountant.
Try to stay positive. Lean on your family and friends. My husband, family and friends have been a rock for me. I try to do 5 minutes at a time and then do 5 more minutes. My mom’s cancer was an incidental finding. Since the women in my family generally live to their mid 90’s, this was really a shock. It’s also hard in that I am a Cytologist and have been in the cancer field since 1978.
Remember that everyone with this cancer is an individual. Not everyone will have the same experiences. Treat yourself gently.
Please know you and your family are in my thoughts and prayers.
Cherbourg
Donna try this link. The drug has been around for a while and was orignally used to treat kidney cancer. It was approved in June by the FDA to be used for advanced hepatocellular carcinoma. While not officially approved for Cholangiocarcinoma, our oncologist is using it and I think he said there had been a small drug study for it’s use in cholangiocarcioma. The problem is that some insurance companies may not pay for the drug since it’s not specifically approved for Cholangiocarcinoma. My mom is going to probably add this to her arsenal. We see the oncologist on Monday.
Hope this is helpful……….
Cherbourg
While reading your post I looked down at the bracelet on my wrist. Mine says “hope”.
Please know that you are among caring and wonderful people. I’ve been reading this site since I diagnosed my Mom back in May but have only posted in the last few days. This is a great site for information and most importantly …support.
You and your family are in my thoughts and prayers.
Cherbourg
Thanks to all for the wonderful caring messages! God certainly provides just what we need when we need it! I know God doesn’t give us more than we can handle but I’m beginning to believe he has a much higher opinion of my ability to cope than I do!!
I’m taking my Mom and Dad to Duke on Monday for another round of chemo. We’ll also be getting the instructions for the Nexavar that came to their house yesterday. I can’t believe her insurance company didn’t even blink at paying for the Nexavar!
My mom is an amazing woman. Her 77th birthday will be on Wednesday and she is still working pretty much full time. She doesn’t have to but we decided long ago that was her “hobby” and she loves it. Fortunately not all of us have that gene! We operate on the premise that if it makes her happy…we’re all happy!
CS your mom does sound amazing alot like mine. She does have cirrohsis as well and her normal weight is 127 lbs. In the beginning she was not eating but is taking Megace. Talk about a miracle drug! She’s eating everything that isn’t nailed down but her weight has been constant. She’s very fortunate right now that the only chemo side effect has been the cold neuropathy for the first two or three days. She’ll be getting her fourth chemo on Monday assuming that blood counts are stable.
As I said my parents have been married for 57 years. (We believe it’s going to work…*grin*) It’s hard to watch my Dad deal with the process of losing the love of his life. Part of me had always hoped that they would go together….
I’ll let you guys know how things go on Monday.
Thank you all…………
My daughter is marrying her Marine so we will have a Military wedding with all of the ushers and the groom in Dress Blues and with swords. My Dad will sing and my nephew’s brass quartet will play. It will be December 20th in our church. I’m hopeful my Mom will be there but I’ve already handed over that problem to God. As I told my daughter ….your grandmother will either be in the pew or will have the best seat in the church.
My daughter’s Marine will deploy for the second time back to Iraq in January. As she says……they’ve already survived one deployment. Hopefully I will still be able to speak in complete sentences by November…*grin*Jan…….I understand what you mean by being mentally drained. These days I can’t decide if I’m having a blonde moment or a senior moment. It’s so hard to watch the progression of this disease. Your emotions are always so close to the surface. I was driving home from another city the other night and had to stop at a traffic /driver’s license check point. When I stopped the car and handed my license to the officer he smiled and said…”Ma’m this is your debit card, are you trying to bribe me? As I tried to free my license from the window in my billfold with no success I told him I was coming home from taking care of my mom with cancer. He smiled and told me to carry on. He said he was sure my license was fine. I was laughing and crying all at the same time. I’m sure your emotions are as raw as mine.
Actually I am my mother’s daughter – not son. Mom is doing well so far with the chemo. Other than cold neuropathy no real side effects. As they told us at Duke they prefer to prevent side effects rather than treat them! A worthy goal!
A real surprise….the insurance company is going to cover the Nexavar. We are waiting for it to be delivered.
