Statistics are so frightening
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Hi Marcia,
Welcome to the site. Sorry that you had to find us all and I’m sorry also to hear about your mum, but I am glad that you have joined us all as you will get a ton of support and help from us all. Have you called hospice yet? As Marion has said, they will come and make your mum as comfortable as possible and you will find out more about what they can do for your mum once they have visited for the first time.
There are a range of medications that will be able to help your mum with her nausea, is she already taking anything for this? If not then I’m sure that hospice will be able to help here along with helping with her pneumonia. My dad was in hospice care and they did everything possible that they could to make him as comfortable as they could.
I hope that you will come back here as we can help you and know what you are going through right now. So please, feel free to ask any questions that you have and we will all do what we can to help.
My best wishes to you and your mum,
Gavin
Marcia…hello and welcome to the club no one wants to belong to, but is happy to have found. Marcia, hospice will be of great help to you. They will make sure that your Mom is comfortable. Progression of this disease varies greatly from person to person, but all issues arriving should be addressed by hospice. This should allow you to feel a bit more at ease. You would want to make sure thought, that they have experience will gastro cancer patients. Will your Mom be living with you? This is a precious time for many memories made. Please, stay in touch. We care.
Good luck on the sale of the house.
All my best wishes,
MarionMy mother who survived heart tumor, (benign), pituitary tumor, (benign), which left her with diabetic insipidus has just been diagnosed in Sept. with CC (bile duct cancer) because of some tenderness in her pancreas area. Aside from some shortness of breath, some nausea and a bout of pneumonia she has had no other symptoms..because she is 85 years of age, she was not a candidate for chemo or radiation. They have just suggested we call in hospice. I am her caregiver and just wish I knew what to expect.
Trying to pack up a house to sell and wanting to spend all my time making memories with Mom.
Marcia
Dear Cindy – One thing that helped my son with the bad taste in his mouth were sour lemon candies (hard candies). His oncology nurse suggested it and it did help. Many doctors will try different types of chemo if the patient can tolerate it. They will usually go another route if this protocol is not working for your Mom. Best of luck on the scan. Yes, waiting can be horrible! – Nancy
Thank you everyone for your replies! My mom will have her third chemo on Thursday and then (at some point) tests to see how things are going. I’m guessing a PET scan. Chemo hasn’t been that bad for her. Megace helps with her appetite and she has two anti-nausea meds too. The worst side affect for her (other than lack of energy) is the horrible taste in her mouth. She has been eating alot of salty/spicy foods because they taste good!
I’m assuming her PET scan will show one of three things:
1. Her tumors are not only not growing, but actually shrinking. Is this even a possibility once it has spread to your lymph nodes?
2. Her tumors have not grown or spread. (A more realistic hope)
3. Her tumors have grown and/or spread.If her tumors have grown and/or spread, do doctors try another chemo option if the patient is otherwise doing OK? Waiting for those results will be torture!!!
Thank you again for listening,
CindyI hope the statistics are wrong because I was diagnosed in Dec 2010 and given a year, year and a half. I’m doing chemo now which will shrink the tumors and keep them at bay. Besides being extremely fatigued, needing a platelet transfusion and occasional bouts of pain, I’m doing OK. Here’s hoping your Dad will as well!
Dear Worries Daughter,
I am a worried daughter too. My mother was diagnosed in August 2010.
Had whipple. No chemo, Just had CT scan yesterday with recurrence showing up where she had surgery. Her CA 19-9 is 120 which is elevated. and I am curious about radio-active pellits put in via interventional radiologists?My mother feels good, she did have a bleed over Christmas that required 4 blood transfusions but she is feeling better now.
That stats are scary, but each person is still a person with lots of fight in them. stats are just that numbers……
Please stay in touch
ronidinkes@yahoo.com
443-394-6163Sending many hugs your way,
Regards,Roni
Myfathersdaughter:
Where in Wisconsin are you? Tom, my husband who also has CC and I live in Green Bay Wisconsin.
Margaret
Hi Cindy – I am also Cindy! My father is 77 and was diagnosed in april of 09, he starting a new chemo trial of abraxane. He has been on gemzar and tarceva which seemed to slow things some, then xeloda and Fulfox which is a pump. It seemed to help. He had surgery in sept this past fall. though he has liver and lung lesions now. Although he was being treated for a misdiagnosed pancreatic cancer and the mistake was discovered just before he surgery. But it’s been alsmost two years now since the intial liver lession was discovered.. and he says he’s going to be with us next Christmas!
This is truly tough. i lost my mother to ovarian cancer last april after four years. I was her primary caregiver and will also be Dad’s. Cancer is never an easy thing for patients or family. I have also had cancer,17 years ago. Everyone is so different and the prognosis are only based on your docs experience with previous cases and how they reacted. My mother was given 2 months and lived four years.
I’ll be thinking of you.
I will be here if you need someone just to talk to.Hello Cindy and welcome to our wonderful family. Guess we kind of make it a habit here not to listen to statistics, they just don’t fit and it makes life a lot more bareable. My husband was given a year and outsmarted CC by 5. We even have a survivor here in his 14th year. We try to always remain realistically optimistic. You ahve come to the right place as we have the smartest, most loving people in the world right here. Please keep us posted on your Mom as we really care.
Dear Cindy,
My Dad was diagnosed in April after being jaundiced for 2 months. They told him without treatment he’d got 3 months max. Dad is still with us and hasn’t had any treatment apart from stents/external drain. Yes he’s more tired, jaundiced and lost weight BUT he’s still with us and luckily pain free. So no one can really say how long anyone has got. Just enjoy each day, even the bad ones as these make the good ones so much better.
Best wishes
Andrea
Dear Cindy – There are a lot of interesting posts on this web site about 5, 6, 7-year (and longer) survivors. My son only lived a year from the time of diagnosis but there does not seem to be good answers to any questions associated with this disease. Some folks respond to the chemo, some don’t. Some live many years, some don’t. We have ALL found that the important thing is to live every day with as much joy and happiness as you can muster and spend time with your loved ones. I found in our situation we wanted true quality of happiness in our lives each and every day, as we knew John would probably not survive this disease. It was very difficult to accept but, once we did, we spent all our time together and I never regret that. It’s hard to be positive at times, when dealing with CC, so make sure you all have a strong support group. This site is a great place to come for comfort and advice. Best – Nancy
Hi Cindy,
Yes, you are right – the statistics are awful. But your mother is more than a statistic. Just because others haven’t responded to chemo doesn’t mean that your mother won’t. Many have responded to chemo and there have been a few on this site who have years of success with only chemo. It can happen – and it could happen for your mother. As has been said many times here, no one has a time stamp on their backside…Please continue to bring your questions and concerns here. We know what you are going through.
Blessings on you and your family,
bobDear worrieddaughter,
5 year survival statistics are just numbers….and by the time you get them they are 5 years out of date. As we like to say on the boards, no one has an expiration date stamped on their butts.
The one thing I’ve learned about chlangiocarcinoma is that it seems to treat each patient differently.
My Mom was Stage IV with mets to the lungs when diagnosed. At the time she was 76, still working full time by choice, active in church and choir and you couldn’t keep up with her. She was walking at work and at home and averaging about 7 miles a day. Her cancer was found when she was in a meeting at work, thought she might be having a heart attack and decided to finish the meeting and drive home to get my Dad to go with her to the doctor’s office. Turns out she had a bout of pleurisy and the lung mets was discovered when she had a CT scan to rule out a blood clot.
Mom lived almost exactly a year. Diagnosed in May 2008 and died April 3, 2009. She was active until the very end. She danced at her only granddaughters wedding in December and saw the birth of her 2nd great grandchild.
We do have success stories on the boards so never give up hope. We are always here for you and usually someone will have an answer or know where to send you to find it!
I’m sending hugs, love and prayers to you and your Mom!
Pam
Oh…the doctors told my Mom when she hounded them for a prognosis that she could reasonably expect about 2 months…..As she pointed out to them they were wrong, wrong, wrong…..
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