Topic: Introductions

I'll tell you a little more about myself.  I am 50 years old and when I was diagnosed I was 48.  I have a 23 year old daughter and have recently remarried.

My surgery was done in Winnipeg, Manitoba at Health Science Center.  My surgeon's name was Jeremy Lipschitz.  The chemo treatment that I am having now is being done at the Thunder Bay Regional Hospital.  I had complications after  my surgery.  An abscess at the incision site delayed the starting of my chemotherapy by two months.  I am in the 13th round of chemo and have been very fortunate not to have pain or nausea.  I did have a period of about 5 weeks after surgery that I was not able to eat and the smell of food was very revolting.

I would also like to say that when I was 5 years old I had a wilms tumor on my right kidney.  I had the kidney removed and had cobalt treatment after the surgery (radiation).  That procedure was done in Winnipeg, Manitoba at the St. Boniface hospital.  Up to being diagnosed with this cancer, I had never had any reoccurence of cancer.  The oncologist has told me that alot of child cancer survivors are now having cancers occur as a result of the radiation treatment as a child.  Has any one heard of this before?

I am very glad I found this site.  I look forward to having the opportunity to share with you all.

lturpin

Re: Introductions

Iturpin....welcome to our site.  We love sharing with you.  Your story is similar to that of our Mark, who also had been treated for kidney cancer at three years of age. And, yes, there is a direct correlation of childhood radiation exposure and adult cancer occurrence.
My husband although not a child at the time, developed Cholangiocarcinoma 25 years after receiving radiation with Thorotrast, a radiologic contrast medium. Thorotrast was banned in the United States in the 1950s due to its carcinogenicity.
If I may ask, what type of chemotherapy regimen have you received so far?  And, why had it been recommended, how are you feeling and how many more treatments are you to receive?  Sorry, hope I did not bother you with too many questions.
So glad that you have found us.  I am sure for others to come along real soon and welcome you to our site
Hugs
Marion

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: Introductions

Marion

So far I have received a combination of Xeloda (oral chemo) 2 x a day for 14 days along with Gemcitabine iv on Day 1 and Day 8 (if my blood levels stay ok)
Apparently this is a clinical trial that they have been doing.

I am on my 13th round of chemo and so far I have been feeling pretty good.  I'm just getting pretty tired from it all.  I haven't lost my hair or anything like that and everyone who sees me says I look great.  Like I'm not even sick at all.  I have been off on Long term disability and I've been trying to keep as active and mobile as possible.  The oncologist encourages me to keep active.  I've actually gained weight (steroids) and am  trying not to get too heavy.  They have stopped the dose of steroids before iv now because I apparently don't seem to need them.

Not sure how long I'll be on this chemo.  My case has been referred to a Oncologist Surgeon at Princess Margaret cancer center in Toronto.  The chemo will continue as long as I can tolerate it and it is shrinking the tumor(s).  I'm waiting to see if anything else can be done.

Laura

Re: Introductions

Laura.....physical activity during cancer treatments are discussed at most medical conferences I attend - not excursion, but steady movements - small walks throughout the day have been recommended.  When is your appointment with Princess Margaret?  This will shed more light on the situation.  In the meantime sounds as if you are doing rather well.  Try to stay positive and take those little walks.  Oh, forgot, it is Canada, is your weather conducive to walking outside?
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: Introductions

Hi Laura,

My daughter, Lauren, the one with cc has never been thin. So when she got cancer, she said, at least now I will finally get to be thin. She did lose around 50 pounds at the beginning before being diagnosed. She would be hungry, but fill up after a few bites. She also had a strenuous job and we think that contributed to her weight loss as well. Since starting chemo until now she has gained a lot of weight. Go figure. People always tell her she doesn't look sick or they can't believe she is sick because she doesn't look like most cancer patients. We even had a security guard at the cancer center we go to question us about needing a wheelchair one day when she wasn't feeling well and we had to go a great distance to the radiology department. I was like, are you kidding me? The guard said that lots of people pretend to need a chair just to put all their stuff on. I was quite offended by that comment, because we are not like that and shame on anyone that is. Anyway, since Lauren has been told she can have a resection, her doctors want her to lose weight, see a nutritionist, and exercise. She will do it and I said I will do it with her. Do you have someone that can walk with you? We have a whole gym in our basement, but we don't care much for exercising, even though it does make us feel so much better. So, we will be right with you trying to get fit. Her surgeon said it is so much easier to recover from surgery when you are in good shape. She has a low bp, good glucose level, and seems healthy on paper, but is overweight. Sorry to go on and on, just wanted to let you know that you are not alone. Take care.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Introductions

Hi Laura,

Thanx for sharing your story.  Sounds like you have a plan in place and for me that has always felt the best when I knew what I was doing and how I was going to fight.

I am a 3+ year survivor of extra-hepatic CC.  I was able to have whipple surgery within a few weeks of diagnosis and I did have 6 months of chemotherapy (Gemzar) as well.  I am doing well now and go back for routine scans and blood work.

I try and exercise most days, but have to say that isn't always the case smile  I live in western New York and it is very cold this time of year (and snowy).  Watching what I eat has also given a sense of control.

Glad you are doing well and it sounds like you have the right attitude.

Take care-
-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.