1 (edited by Bonnie5 Sun, 28 Apr 2013 10:51:38)

Topic: Introduction

Hi
I am not sure how to post on this. I was diagnosed with CC in September and have been reading your site and am very interested in the discussion board. I am a 49 year old female. I live in Canada. I have lots of comments and questions and possibly good information on things that I have found have helped me.
I started with issues of stomach and back pain. Then I started to lose weight and not be able to keep food down. I went to the Dr. in June they did a CT scan and nothing showed up. she did blood work nothing there. They tried prescriptions for irritable bowel and things of that nature. I continued to lose weight. I was hospitalized in September with Jaundice. Originally they thought I had gall stones and that they would do surgery and remove the stones and the gall bladder but with further testing discovered CC. I was in the hospital for 6 days. They did many tests ultra sound and MRI. They sent me home with a scheduled visit with a liver specialist/surgeon. At that visit he told me I was stage 4 and that it had traveled to the liver. The original tumor was in the bile duct. They said it was on the CT scan in June but was so small that it was missed. In September it had grown and was blocking the liver from functioning so that is why I was jaundice. Since then they did a biopsy and PET scan to be sure. I seen the oncologist and they said chemo would not help to shrink the tumor and risky because I have had so much weight loss. I weigh between 77-81 pounds. I am doing well with pain meds. They put me off work but I am up and about and eating small meals often and have mostly good energy levels. I am very positive and am enjoying life.

Re: Introduction

Dear Bonnie, welcome to our extraordinary family, wished you didn't have to be here! You posted just fine, I do have one suggestion, everything you post at one time can be written in a single post, I think it will be easier for you then you don't have to keep going back in, it can all be on that one post.  First I want to commend you for knowing to call your ONC before trying anything he has not given you. CC can be very difficult to diagnose in the begining and we are big believers in 2nd and 3rd opinions! I have never heard of the Med from Cuba, I can't remember the name and lost my first post trying to find it, Vi something? What is that for? What kind of treatment are you having now? Try to read up on some of our Members here as knowledge is the best tool for fighting CC. You have come to the best place to be to ask, advise or just vent. Please keep us posted on your progress, we truly care.

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.

Re: Introduction

Hi Lainy,
Yes I think I have the posting figured out now. They are not giving me anything. No chemo as I am not a candidate but my friend brought me the Vidatox from Cuba. If you look it up of course it says it shrinks cancer tumors. I will let you know what the Dr. says. I have been reading the postings on here for a while now and find it very informative. So I thought I would log on and tell my story.

Re: Introduction

Dear Bonnie, I sure don't want you to feel uncomfortale with what I have to say but I would definitely get a 2nd opinion. What is their reasoning for not offering treatment. Did they give you a Staging number or say why not? So far there is nothing but Surgery to cure CC and some who have had chemo are doing extremely well. Actually we have come a long way in just the last couple of years and are making big strides now. A few years ago you would mention CC and people would look at you like you were from another planet. We are so glad you are here and we do have some members from Canada. I know you will hear from many and please let us know what the ONC says about the Med from Cuba. I always feel if something was that powerfully good why don't we hear about it and why don't ONCS use it. Please do let us know what the ONC says. Best of luck.

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.

Re: Introduction

Bonnie...I would like to follow Lainy and welcome you to our site.  Don't know where you are located, but I am wondering whether you have been seen by the specialists at Princess Margaret Hospital, Toronto.  Also, have you had a consultation with an interventional radiologist?  Who is overseeing your care at this point?
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

Re: Introduction

Hi Bonnie,

Welcome to the site but I am so very sorry you had a reason to find it.  Like Lainy, I am curious as to why they are not offering treatment of any kind.  There are many that have helped others and although (like Marion said) surgery is the only curative treatment, many on this site have be around a lot of years by doing other treatments (cyber knife, radiational interventions, chemo).  I would definitely seek another opinion before I accepted that there was no treatment to be done.

I am a 3.5 year survivor of extraheptatic CC.  I had surgery and chemo and I am feeling great.  I have a scan scheduled for the middle of May and while I have some scanxiety (ok lots of it) I feel great.

I wish you the best and I am sure others will come around and say hello soon.

Hugs,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Introduction

Randi, I would sit here and worry some for you but I already know the Scan is going to be good!!! You certainly would not be getting your degree and do all that you do if something was not good. LUV YA!

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.

Re: Introduction

Thank you Lainy!  big_smile  You are very sweet.

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Introduction

I am posting on this again as I want to see if someone has anything more they can tell you to help. Sundays are kind of quiet. We have many Stage IV members who have or are being treated and that is why I hope you will seek another opinion. This is bothering me and I believe Marion posted the go to Hospital in Canada and I just found it:  Princess Margaret Hospital, Toronto.   All you have to do is gather copies of all your tests and LABs and e mail it to an ONC at this Hospital. Good luck.






Princess Margaret Hospital, Toronto.

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.

Re: Introduction

Hi everyone,

Well to start off the Dr. said I can take the Vidatox. It won't hurt me or interfere with my pain meds. It is just a homeopathic med, not likely any good but why not take it. Anything is worth a try smile You can only get it in Cuba. It comes from Scorpions and is blue scorpion serum. I am going to take my first dose today, you are supposed to take 5 drops under the tongue twice a day. I will keep you all updated on that.
As for the chemo, now that I have the pain under control and am able to maintain my weight I am going to revisit this. The Dr. felt that if we did do any chemo and all it would be single Gemcitabine. He felt that with the huge and continued weight loss it would do more harm than good. At the time I agreed because I was so weak and tired but now I am doing well. Keeping my food down and a steady weight of 77-81 pounds. I am stage 4 extraheptatic CC. Tumor on the bile duct, head of pancreas and all throughout the liver. The liver surgeon I have is awesome and soooo really wanted to do surgery especially because of my age. I am really glad that I decided to join this site. Just having people that know what the heck CC is helps because the first reaction of people is that they have never heard of it. I live in Nova Scotia, just outside of Halifax. Hope this post isn't confusing. I am trying to answer all the responses. So happy to  have responses smile

Re: Introduction

Bonnie...same here; we also are glad that you have joined our site.  I am happy to know that you have been able to adjust your food intake accordingly and most of all - you are feeling well.
You already have figured out to consume small meals - spread throughout the day and night that is if you are up and about.  Pain appears to be controlled also - fantastic.  Bonnie, moving around a bit also helps your digestive system work its best.
Creon enzymes also aid in the digestion something; you may want to discuss with the physician.
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

Re: Introduction

Hi Bonnie,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear what you are going through. But I am glad that you have joined us here as you've come to the right place for support and help, and I know you will get tons of both from everyone here. My thanks to you for sharing everything and yes, your posts are working just fine!

I'd never heard of Vidatox before until you mentioned it here. I did a search on the site for it and nothing came up and looked for it on google as well and saw the same claims etc that you probably did as well. I'm really glad that you spoke with your doc about that before taking it and discussing things like that with your doc or onc is definitely the way to go if you or anyone else is condisering taking things like that or something similar. As you will no doubt be aware, the internet is full of stuff that makes various claims etc.

You sound really positive from what you said here and that is great to hear! And also, you sound right up for the fight too and that is also great as well. And remember too that we are here with you as well. Please do keep coming back and let us know how everything goes. And if we can help in any way at all then please just ask and we'll do what we can to help. Looking forward to hearing more from you.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Introduction

And Randi, grrrr to scanxiety!! Loads of positive vibes coming your way and of course everything will be crossed for you. And if the scanxiety continues, just think of handsome Scotsmen making haggis and that should take your mind off things!! smile

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.