• From: New Zealand
  • Registered: Wed, 31 Oct 2012
  • Posts: 19

Topic: mandy

Hi There. My name is Mandy and I live in New Zealand.  I am a 39 year old mum of three.  I was diagnosed with CC in September. I have had surgery and they removed My bile duct, a 5cm tumour growing on my bile duct, gall bladder, 8 lymph nodes, 70% of my liver and did a biliary bypass.
Fortunately the cancer had not spread beyond the Tumour and I am told they aggressively removed all the other bits as a precaution.  I am currently on my second cycle of chemo, again Im told this is a precaution just in case some cells got loose and I believe they plan on doing another 5-6 cycles.  I am so greatful to have found this website as I have not been able to find much information here in New Zealand. Is there anyone else out there in a similar situation as me? From reading alot of other posts so far I am thinking that I might sound pretty lucky.....or is this the calm before the storm. This whole thing is so Daunting. 2 months ago I thought I was as healthy as the next person, my how life can change in an instant.

  • Lainy
  • Lainy
  • Moderator
  • Offline
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,216

Re: mandy

Hi Mandy and welcome to our remarkable family. Wow! Not sure but I don't think anyone here has had the amount you had removed in one surgery. You are one brave lady! No one can tell if it is the calm before the storm as everyone is so different but I would guess not. I'm glad you have been reading our posts as knowledge is the best thing we can offer in fighting CC. I think daunting is a good word to describe your experience. As you know its late evening here in the U.S. but I know you will get lots of welcomes tomorrow. The best thing I can tell you is to be very strong, as your strength will get you through. Please keep us updated  on your progress 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.

3 Reply by marions (edited by marions Fri, 02 Nov 2012 11:28:13)

  • Registered: Fri, 12 May 2006
  • Posts: 8,170

Re: mandy

Mandy...welcome to our site.  You have much healing to do; dear Mandy and I hope that you are recovering well.  We have few reports on bypass surgery and those we do hear of are performed due to disease progression.  But then again our forum is not visited by everyone. Either way I am hoping for others to chime in share their thoughts with you.
I am glad that you have found us.  Please continue to share with us.
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
  • From: NSW,Australia
  • Registered: Sat, 14 Feb 2009
  • Posts: 557

Re: mandy

Hi there Mandy and welcome.We do have a few members from Australia here to keep you company.I think you have done pretty well,what hospital were you treated in? its good to know for any future enquiries we might have.
  The treatment you  have had sounds all good,what the future brings who knows but the surgery gives you a good chance
                                             Janet

  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,488

Re: mandy

Hi Mandy! Wow, have you been through a lot! My daughter, Lauren is the one with CC and has not been able to have surgery due to size and placement of tumors. I just wanted to pop in and welcome you to this site. What type of chemo are you on and how are you feeling these days? It must be difficult having three children to tend to. I am hoping the surgery has gotten rid of all the cancer and you will be happy and healthy after recovery. Please keep us posted as to how you are doing. Your comments will be helpful to others who will go through surgery as well. Thanks for finding us, but so sorry you had to.
All the best to you.

-Pam

Hoping for a miracle for my daughter, Lauren.

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.

Pamela's Website

  • From: California
  • Registered: Mon, 20 Aug 2012
  • Posts: 274

Re: mandy

Dear Mandy,
   It's hard to imagine that you could be thought of as "lucky" (how lucky is it to have a rare cancer?).  Yes, many here consider you lucky to have had that aggressive surgery right off the bat; that is the best case scenario.  I, like you, have so much to learn about this disease as my 50 year old sister was just diagnosed in early August of this year.  At first, they wanted to rush into surgery, but then decided not to due to location of tumor and it's rapid growth.  They are doing chemo first, in hopes of surgery later.  We were disappointed, but really trust the Dr and his reasoning.  I like the idea that they are going to give your chemo after surgery just in case some cells remain.  Best wishes to you and your young family as you recover from surgery!
Willow

Willow
  • Gavin
  • Gavin
  • Moderator
  • Offline
  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,832

Re: mandy

Hi Mandy,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear what you have been through, you sure have been through a lot! Thanks for sharing your story with us all. I'm glad that you have joined us all here as you have come to the best place for support and help, and I know that you will get a ton of both from everyone here.

There's not much that I can add to what the others have said to you but I just wanted to welcome you here. I hope that you will keep coming back and let us know how things go for you. We are all here for you and we care.

Best wishes,

Gavin

  • From: New Zealand
  • Registered: Wed, 31 Oct 2012
  • Posts: 19

Re: mandy

Thankyou for all your kind words, and it is good to know that there are people as close as Australia to talk too!
I was operated on in Christchurch Hospital by an amazing surgeon Mr Saxon Conner.  I have been told he is extremely good in his field and I found him to be fantastic. I do Know he decided to take the aggressive approach as he felt that considering my age and health, I had a good chance for a cure as the only cancer found was in the Tumour itself, I think he decided to take the whole bile duct and do a bypass because it was blocking the bile duct. I am currently on cisplatin and gemcitbine, which seems fairly standard?

  • Lainy
  • Lainy
  • Moderator
  • Offline
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,216

Re: mandy

Dear Moowal, glad to hear you are doing so well and yes GEM/CIS is a very popular chemo cocktail. Sounds like you have a great Doctor and aggressive is good with CC. Wishing you again, a speedy recovery!

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.
  • From: London
  • Registered: Fri, 28 Aug 2009
  • Posts: 1,058

Re: mandy

Hello Mandy!! Welcome to this wonderful family smile  Wishing you a good recovery from your surgery and much success with your treatment.

Julia

Missing my lovely sister ...

"When it gets dark enough, you can see the stars" - Lee Salk

Lalupes's Website

  • Gavin
  • Gavin
  • Moderator
  • Offline
  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,832

Re: mandy

Mandy,

As Lainy has said to you, the Gem/Cis combo is indeed heavily used for CC and  there are a ton of posts here on the site from members and their loved ones who have went through it. The search forum function will throw up much info on Gem/Cis should you wish to read more about it.

Gavin

  • From: North Kingstown, RI 02852
  • Registered: Fri, 05 Oct 2012
  • Posts: 27

Re: mandy

Hi, Mandy.
You sound like a very brave, strong person.  Sounds like you are in the care of a very competent Dr., too.  I really wish you well in your recovery.  Do you have good help at home?
Welcome and all the best.
Cristerry

  • From: France
  • Registered: Mon, 23 Apr 2012
  • Posts: 41

Re: mandy

Dear Mandy
It is exactly one year ago I was told I had cc.  Like you, I had agressive surgrery including removal of a large tumour, liver resection and that was followed by chemo and radio.   A year on, I feel amazing and so many people say I look ten years younger.  After completion of all the treatment, I had a period of depression and still take antidepressants.   I laugh every day and do something special every day ... stay positive and you will get through.    You are young (I am 52) and otherwise healthy ... you can win this battle.   Good luck Mandy, I wil be thinking of you. X
Sandie

.... because I can ....
  • From: New Zealand
  • Registered: Wed, 31 Oct 2012
  • Posts: 19

Re: mandy

Thankyou Everyone,you are all amazing people. 
I am really struggling with the depression at the moment, I am taking Lorazapam but I think it may not be doing a good job. I do have wonderful people around me. But My Husband, who I feel I need the most, is also not coping well.  He is so busy, we run our own business, and between the children and work there doesnt seem much time for me.  I feel Im left to deal with my problems and the side effects of the chemo, which this cycle have definently been worse, as he is not able to deal with it himself. It must be so hard for him to one day have a healthy wife an children and a pretty good life to having all this to deal with.  He does not come to any appointments with my doctors or take me to chemo or anything anymore. He pretty much just finds any excuse to be busy with other things.  I guess my question to you all is this, How do I help him and myself at the same time, I feel that once my treatment is finished and Im on the recovery side, there may not be much of a marraige left. I feel resentful that he does not want to be there. I know he loves me but I think this is too much for him to deal with.  Any advice?

  • From: NSW,Australia
  • Registered: Sat, 14 Feb 2009
  • Posts: 557

Re: mandy

Mandy it certainly is difficult as a partner and rather overwhelming  at times and when you have a busy household with kids you do feel this huge sense of crippling responsibility and concern for the future.
     I think counselling is really helpfull ,as a couple or separately.I t is important that he goes to the important apointments but for the chemo and some of the others perhaps a friend or other family member could go with you.You need to access as much family/community support as you can because your family needs it and your husband needs support too,he may be feeling a bit burnt out.
    Hopefully your marriage will evolve and strengthen as this all plays out...but it will never be the same,you will all be changed as a result of your experiences but you will come through together
                                              Janet

  • Registered: Fri, 12 May 2006
  • Posts: 8,170

Re: mandy

Mandy....I agree with Janet, counseling can be of tremendous help to you and your husband. We know for relationships to undergo changes throughout our relationship however; a cancer diagnoses can strain even the healthiest of relationships.
Notoriously man are less inclined to seek out emotional support from a qualified mental health counselor whereas, women (generally) thrive with the support given.  Therefore, you might want to search out someone qualified to counsel families affected by a disease and begin individual sessions with the hope for your husband to join you at a later date. 
You might also want to reach out to our Dr. Giles, as his wisdom and guidance has helped many of us navigate stressful times.  You can connect with him via the below link:
http://www.cholangiocarcinoma.org/ask.htm

Additionally you might gain some understanding a support with this link:
http://www.cancer.net/coping/relationsh … or-partner

And, remember that we are in this together and that we are here for each other at all times.

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
  • Lainy
  • Lainy
  • Moderator
  • Offline
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,216

Re: mandy

Mandy, I so agree with Janet and Marion. Just would like to add that if you and your husband can go for counseling, at some point you may want to see if the children need to talk to someone as well. Also let your doctor know that you do not feel the Lorazapam is working. I wish you better days ahead and we are all here for you!

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.
  • From: New Zealand
  • Registered: Wed, 31 Oct 2012
  • Posts: 19

Re: mandy

Thankyou so much, I will make some enquiries today about counselling, I hope I am able to find someone to help us as we are in a fairly small town. Also I will make an appointment with my Doctor and see what she can suggest.
Much Love to you all.

  • From: Roanoke, VA
  • Registered: Fri, 05 Oct 2012
  • Posts: 87

Re: mandy

Hi Mandy
Wanted to give you a caregiver perspective. I was a caregiver for my husband, but I had to continue working. I tried to go to all doctors' appointments (went to most), but I didn't go to chemo appointments. And he didn't really want me there anyway. Our friend usually took him to chemo appt. If I had to miss appointment and didn't get clear answer from my husband - I would call his doctor and get information I needed. I had to take care of the children as well, so he understood that I was taking heavier load already. Please continue to inform your husband on your treatment. My guess is that he is probably overwhelmed with taking care of the kids. Please ask your family and friends to help you, as well as schedule the "date" just with 2 of you from time to time. Everybody is different, but usually my husband was feeling better on the day of the chemo or prior day. So if someone can watch kids for you when you are feeling better - you could reconnect and discuss any issues that you might have.
Wishing you best of luck! Alla

  • From: New Zealand
  • Registered: Wed, 31 Oct 2012
  • Posts: 19

Re: mandy

Hi Alla,
Thankyou so much for your post. It is good to hear it from the spouses point of view. I have set up some counselling sessions for us both to try and open up the lines of communication.