Topic: Newbie from Ontario, Canada

Hi Everyone,

I wanted to introduce myself. I am Michelle and I live in Ontario. I am joining this online support group b/c I know how important it is to have support when you are supporting a person with cancer or battling cancer yourself. I am a breast cancer survivior I was diagnosed at 38 year old in 2009. No Family history... I have had chemo, rads and surgery. I am saddened to say that cancer has hit my family again. My brother has been diagnosed with primary bile duct cancer and has mets in the liver. He was also diagnosed at 38 years old. He was in perfect health as was I b/f he got cancer. Non smoker, social drinker and active....

Currently, he is considered non-operable. He is on the chemo regiment gem-carbo. He is on for 2 weeks and then off for 1 week. He was diagnosed in Feb, 2012 and started chemo in March. He is doing fairly well on chemo. Some side effects but he can live somewhat of a normal life other than the first few days after chemo. He has nausea and fatigue. His last CT showed that the tumour in the bile duct is shrinking and some of the small lesions on the liver have shrunk too. We are happy about that and hopeful he continues to keep doing so well on his chemo plan.

This disease has turned our family upside down and I wanted to join an online group that advise me on treatment, side effects and resources for my brother.

One question I have is does anyone know how long a person can stay on the gem carbo chemo?

Take Care,

Michelle

Re: Newbie from Ontario, Canada

Hi Michelle,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your brother. But I am glad that you have joined us all as you have come to the best place for support and help, and you will get tons of both from all of us here. And you are so right what you say about having a support network when dealing with cancer of any type, and now you a great support network here. I came jere in 2008 when my dad was diagnosed, and back then it was the best thing that I personally could have done.  Everyone helped me so much and I know they will do the same for you.

Where abouts in Canada was your brother diagnosed and where is he being treated? We have many members here from Canada and I know they will be along soon to introduce themselves to you. The Princess Maragret in Toronto has much experince with this type of cancer and in treating patients with CC.

That is great to hear that your brother is having some shrinkage in his tumours in response to his chemo treatment. My fingers are crossed that this continues for him. I know you say that the doctors have considered his CC as inoperable, my dads was inoperable also. Have they spoke about the possibility of surgery should the shrinkage continue for him? And did your brother seek any further opinions on his CC before he started his treatment? Also, is he taking any anti-nausea meds for his sickness? Sorry for all of the questions, but the more info you give us the better we will be able to help you.

The Gem/Cis combo that your brother is on is well used for CC and we have many members of their loved ones on it. And, we have a great chemo board here that may be of interest to you as well. It can be found here  -

http://www.cholangiocarcinoma.org/punbb … .php?id=16

I am not sure exactly how long someone can stya on this regime for, but I know that Percy or someone else will be able to help you further with this. My dad never had chemo so I can't share any personal experiences about that with you.

We are all here for you. I hope that you will keep coming back and keep us update on how your brother gets on. And I know you will have more questions and please feel free to ask them and we'll do our best to help. We know how you feel and we care.

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: Newbie from Ontario, Canada

Dear Michelle, welcome to our remarkable family but sorry you had to find us. It sounds like your brother is doing well except for the nausea, which can be and should be controlled. We love the word shrinkage, shrink, shrink, shrink.   
Congratulations to you on being a Cancer survivor and that should bring HOPE to your brother as well.  Always know that you can get 2nd and 3rd opinions. We strongly believe in that and as Gavin said, Princess Margaret is a good place for another opinion. I can't tell you how long one can be on Gem/CIS but it seems to be the popular cocktail of chemo. Sending best wishes to you and yourbrother and please keep us updated as 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: Newbie from Ontario, Canada

Hi Gavin and Lainy,

Thanks for the quick replies and support. My brother is having his chemo done in Barrie, ON but he has seen surgeons at Sunnybrook in Toronto.

At this point they are saying that the CC is inoperable b/c he has mets in the liver. No mets anywhere else ( thank goodness). Since being on chemo is liver is operating pretty much back to normal acording to his LFT's and his bili is almost normal.  It is hard to get lots of info. from him and his wife b/c I am not sure they want to believe he is inoperable.... I believe that the longer he can stay stable and keep shrinking the tumour and lesions the better chance he may one day get surgery.... At this point I need to go with what he has been told. He will see his surgeon again in the summer so we will see then what is treatment plans will be.

Yes, My brother is being given the anti-nausea drugs. He also has home care come in to the house to give him extra fluids. He may have a weak stomach b/c when I was on chemo I had bad nausea and vomiting so it could be genetic?

Thanks for all your support and I will be coming back to this site. It is nice to speak to people that understand this type of cancer... It is hard to find good info on CC. esp. for people who are healthly and young and have CC.

Take Care,

Michelle

Re: Newbie from Ontario, Canada

Hi Michelle,

Welcome to the forum and sorry that you had to find us. I am a fellow Ontarian. My wife and I live in Ottawa. My wife is the one with CC. She got diagnosed last April, a few days after she turned 44. She is being treated at The Ottawa Hospital. She was very fortunate that she was able to have surgery. (sounds unnatural to say "fortunate" about CC patient)

You asked how long a person can stay on the Gemcitabine/Carboplatin chemo. The following study says that patients completed up to 9 cycles.

Gemcitabine with carboplatin for advanced biliary tract cancers
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3028583/

For the reference, my wife completed 6 cycles of Gemcitabine/Cisplatin after her surgery. The last three cycles were very tough. We debated quitting chemo after each cycle. Keep in mind, carboplatin is supposed to be far less toxic than cisplatin. Fingers crossed that your brother will be able to complete as many cycles as his doctors deem necessary.

The fact that both you and your brother got cancer at the young age of 38 makes you strong candidates for genetic testing. Certain inherited genetic mutations can be responsible for both breast cancer and CC. If you or your brother have kids, this is something you might want to consider doing for their sake. Genetic testing is covered by OHIP.

Best wishes,
Eli

6 (edited by Pamela Sun, 13 May 2012 21:00:48)

Re: Newbie from Ontario, Canada

Hi Michelle,

Welcome to this site, but sorry you had to find us. My daughter, Lauren, is 26 and has Cholangiocarcinoma. She had 16 treatments of Gem/Cis and 5-FU before her oncologist stopped the Cisplatin and continues now with just the Gemzar and 5-FU. He wanted to give her a break from the Cisplatin because it is supposedly hard on the kidneys. She has a very large tumor on the right side of her liver and a few small ones on the left. She will be having a procedure called Theraspheres on Wed. We are very hopeful this will kill all the small tumors on the left. Her large tumor is 50% necrotic from the chemo. She has had very minimal side effects and I think that is great given she has been on three chemos at once.  The two chemo program she is on now is like nothing to her. She doesn't feel bad at all.  I'm sure it has something to do with her being so young.  That is also what makes the situation so heartbreaking.  I wish you and your brother all the best.  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.