You are not logged in. Please login or register.
|La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español.
Por favor publique sus preguntas en Español y un intérprete le va responder.
Help us reach our $20,000 goal!
Join our new Mentoring Program
Posts found: 20
I have to say that I have not visited this website in a really long time.
I guess I should write in the good news section but somehow I can't bring myself to do it.
Mum was diagnosed with cholangiocarcinoma in July 2008. She has had several stents put in and two 6 months chemotherapy treatments: first one with gemzar and oxaliplatin and the second one with gemzar only as oxaliplatin was giving her irreversible side effects (neuropathy).
Her last two scans have shown that the tumor and the metastasis in the liver have gone. Yes I should be jumping up and down (and I did when i got the news in September). I don't even know how this is possible. The doctors seem to have no answer. I am a very rational person and I'm finding it hard to believe it. Don't get me wrong, we are all really happy.
The thing is that her liver is very very damaged. She's yellow all the time now even if the stents work properly and is showing all side effects related to cirrhosis. I'm scared. Wherever I read it seems to me that this is irreversible and always progresses. The results are never good. So, did I go from being scared of losing her to cancer to losing her from cirrhosis? Has anyone had an experience like this one? The doctors say she will always suffer infections and from this type of side effects but do not talk about progression or prognosis and I am having a bad time coping. Can anyone help me?
This post just made my day!!!
Hahaha! I was just talking to my mum about that and she says that her legs have been hair free since starting the chemo and that she's enjoying that!!
Mum hasn't lost her hair but it's falling. She started her chemo in August. She feels it's getting thinner. She's on Gemzar and Oxaliplatin.
You are a real inspiration. I will say I paryer for you to Saint Peregrine, as I have been doing for my mom.
Keep us posted.
I am very very sorry for your loss. I hope time will help you find peace in your heart. My prayers are with you.
Can I jsut ask a question? Why is it important to stop dairy products?
My mum has been experiencing head pain as well. She says it's on the side a bit higher than her right ear. I have no idea if it's related to her condition or her treatment but the doctor said that it was probably nothing and that it's likley to be stress. She is on treatment though.
I can't really give you any advice on all this as I am new to all this, but what I can give you is the point of view of a daughter who knows that her mum, her best friend, is not going to be here for as long as she thought she would be... I also am sad and afraid that my mum won't be there for my wedding or for holding my hand when I have my first baby... IT kills me and is what makes me the saddest.... But what I know is that she has prepared to be a good person and has made me the strong woman that I am today. We are stronger than what parents believe... I am 28 now, but I do have a 19 year old brother and I am very confident that we will be OK. I am sure that when all the acute grief is gone and we find peace in our hearts, we will have grown from this experience.
It won't make up for my mum not being there but this will mean that she will have left us something invaluable and that is who we are.
I do hope you get to do all those things with your son but if you don't, don't fret, because you will be there in his heart.
My mum and I live in gray and cold Geneva in Switzerland. This year it seems as my mum says, that they have completely forgotten about fall and switched on to winter straight after the summer. Brrr! It's so cooold!!
I'm sorry to hear that you had an unsuccessful attempt at liver resection. It must have taken you long to get back on your feet. For my mum this was never an option... hers is growing into the portal vein and she already has one metastasis on the liver. They couldn't even biopsy it. She did get to stents placed to drain the bile.
Mum is still going to her weekly hair appointment (I think the girls there are like a psychologist for her, they have been very sweet trying to find ways to keep coloring her hair without any chemicals ), to her pedicure appointments and is now enjoying shopping as she has lost some weight...
Let's hope that this lasts!
When is your next infusion? I'll keep it in mind and try and send a lot of good vibes all the way to Gerogia. Mum's actually getting hers as I write this. And in the mean time, if you could send me some of that sun and good weather to Geneva, Mum and I would eally appreciate it!!!
This is helpful, I'm reassured.
We've already been to see a wig for mum, she's chosen the color and everything and it is waiting there until she actually needs it. The guy there said that he would shave it off if she sees that it starts to fall off but so far mum has found ways to make it look like she still has it all she's a trooper and very creative.
I sure hope you remain nausea free and symptom free. Mum has really been feeling great, except for fatigue on the day of the chemo and sometimes the day after. I really have noticed though that since my family has been visiting from Guatemala and have been here, she's been doing a LOT of things and it seems like this has reduced her fatigue. I suppose that if you just stay indoors and do nothing you will feel more tired; the oncologist told my mum that she still has lungs therefore she should keep walking and being active, and I really find that it's helped her.
Mum is in a similar regimen: oxaliplatin and Gemzar. She's had the hiccups and constipation (!) plus she's feeling the begining of neuropathy. But all in all she is well. No nausea yet and let's hope it lasts. She will do her 3rd infusion tomorrow. She is starting to lose her hair and I don't think I have any conforting words for her regarding this... how do you tell a woman it is ok if she's going bald??? She loooooves her hair
I had little question though, my moum is being treated one week with both, then one week Gemzar only and then one week nothing and so on. How are they doing it for you all? is this normal procedure? Are you taking it every day? I'm new to all of this...
I have to say all this about the sugar is new to me!! My mom's oncologist did not recommend ANYTHGING concerning her diet. He did not even say anything about low fat or low sugar. She is eating everything although trying to keep it healthy... Should I tell her to stop sugar altogether? What about drinks? What do you guys drink? (my mom doesn't seem to like water, nor di I ) I'm guessing that all those sugar free drinks are even worse, no? She keeps drinking massive amounts of cranberry jucie...she calls it her "red wine". What do you guys think?
Thanks for the help. I have contacted Dr Kennedy and he referred me to the company who makes the spheres who in turn referred me to a specialist in Zurich. I just got off the phone with him and I will send my mom's file so he can have a look at it. I'll keep all of you posted.
I will also try and keep you posted as my mom is being treated with oxaliplatin and gemzar. But she only started last Thursday.
Is there anyone here who knows where this treatment is available in Europe?
Thanks Carol! I will try and contact him.
Thank you so much for your comforting words. It is so nice not too feel like you are the only people going through such an ordeal.
I've been feeling much better these past few days, I think I've come to accept the battle that has been put in front of me.
During the next few weeks, some of my family is coming. See, we are guatemalans but we live in Switzerland and of course all my family is still over there. I can't wait for them to come!
Mum had her first treatment on Thursday and is looking great. No side effects yet. But I suppose this will change in time?
I think I want to try and get her this book about this Anti cancer diet, I guess we have to try everything.
I am not alone, Mum remarried a few years back, but I feel like my stepdad and brother don't realize the gravity of the situation, or maybe they're men and can't express it the same way.
I will keep you posted on Mum's progress. I hope all continues to go well for you guys.
I am very happy to have found this site, I feel like I have found support.
I can't seem to be able to find Dr Kennedy's details. Is there any way you can help me?
Mercedes (Geneva, Switzerland)
My mum (52) was diagnosed with unresectable CC about 3 weeks ago. She had turned yellow, that's why she went to the doctor and why the made a scan.
Since then she has had to procedures to insert 2 stents (metallic), to help with the draining of the bile.
She has one metastasis in the liver.
She started chemo yesterday (Oxaliplatin), I have no idea if it will work.
I am having a lot of trouble coping with this, so I guess this is why I am here. I tyr to be strong in front of her but when I get home I just can't help it, I feel sad and scared. I'm having a lot of trouble accepting it and can't get it out of my head. Prognosis doesn't seem to be great with this disease and I can't get it through my head that she won't be here for as long as I thought she would. She's the best mum ever.
Anyways, I have read a few of the postings and it's helping, so I hope this will make me feel better.
Posts found: 20