1

(58 replies, posted in Introductions!)

hi Jeff.. im sorry you had to join our group.  My mom was diagnosed in November 09 with a inoperable klaskin tumor with mets to the liver and lung.  She is currently on a chemo cocktail of gezmer/clisplatin and is on her 4th round.  Im know things seem really bad at first, especially when you start reading things online and its definitly a rollar coaster but you will find alot of good news and good messages on this board.  My mother is doing fairly well with her treatments and seems to be responding to the chemo which will open other doors for other types of treatment.  Although there is no cure at the moment, you will see that you  need to take it day by day.  There are new trials all of the time and maybe raising awareness for this type of cancer is something that we all need to do so that early detection can be something that happens more often!  Jeff - I am still in shock, my mom is 63 and was healthy before she turned yellow.  She lives next door to me and just moved to Florida a few years ago to watch my kids grow up.. i wake up every morning and pinch myself and hope this is a just a nightmare.  I totally understand where ur coming from.  We are here for u and please look through this website.. it has helped me get through so much these past few months.  We are with u all the way!!! Keep us posted.

My mother was diagnosed in November 2009.  SHe was originally told the tumor was resectable and once she went into surgery, they found she had mets to both lobes of the liver.  From there they stopped the surgery and suggested she begin chemotherapy immediately.  She is currently doing a chemo combo of gezmar and cisplatin and it seems to be working ok for now.  Her blood levels are stable, shes in no pain, and she tolerating the chemo well expect for being tired.  She had her first petscan last week and there was also a 3cm met to her lung.  Since my mother has decided to fight this and not give in, we dont ask how long rather whats next? Anything could happen to anyone at anytime.. one day at a time.  FOr now, my mom is here with her family and her grandchildren, shes feeling relatively well and i bless everyday we have together.   Please keep us posted and you will see alot of miracles on this sight and it truely does give you something to hope for.  Take care

3

(13 replies, posted in In Remembrance)

Im so sad for you. My heart is breaking for you.  Im really sorry

4

(4 replies, posted in General Discussion)

Hi Everyone

Well Mom had her visit today at Mofftt and the doctors went over her petscan results and it showed in addition to the liver mets a single met in the lung.  very small but still there.  My mom got upset but then just listened as he said he feel everything is stable for now and they are going to continue with the chemo treatments.  Shes having her third infusion today. 

Cant believe this is happening.  My mom and i spent the whole week together.  She had so much energy, we went shopping, she hung out at my house and was eating like she used to.   I was really convincing myself that maybe this was just a terrible mistake and that she was going to be a "miracle" patient and go there and be fine.  I guess it was just wishful thinking.

What does it mean with a met in the lung?  Its very small like I said and theres just one. 

Thanks

5

(9 replies, posted in Announcements)

When is the conference?  Im in the Tampa area and have no problem coming and helping out.

6

(14 replies, posted in Introductions!)

My mother was disgnosed with this in early November 2009.  We were originally told that she can have surgery because none of the CT Scans showed any mets.  She went to NY and consulted with Sloan Ketterin and Mt. Sinai and choose a surgeon.  When he went in to do the surgery they found the cancer had spread to both sides of the liver and closed her up.  From there we were told that chemo is her option right now.  She decided to come back to Florida (where she lives) and we are now seeking treatment at Moffitt Cancer Center.  She is on a combo of chemo Gezmer and Cisplatin and just finished her 2nd dose.  Shes doing ok and holding up so far.  We have an appointment with the Mayo Clinic in Florida in early Feb just to see what other treatments they might offer if the chemo does not work.  Good luck with your journey.  Im sorry you had to join this group but you will find strength and its a great support system on this site.  Please keep us posted.  God Bless!

7

(5 replies, posted in General Discussion)

Hi.. hope everyone had a great holiday.  After all was said and done we really enjoyed this Christmas season.  I got a spend it with my mother and thats the best gift.  She had her first chemo treatment on New Years Eve and took it like a champ, she even went to a party that same night and stayed out at our neighbors till 1:30AM!!!.  She got tired after the third day and has been resting.  No upset stomach, or anything like that.  Shes complaining about constipation, not sure what would help...if anyone has suggestions it would be appreciated. 

She came over last night and for the first time in a long time, she didnt look gaunt, her face looked full and pink, and she just looked great.  I dont know if this is the calm before the storm but im just taking it and being thankful that her first treatment went good.  Im sure there will be other bumps along the way but im just enjoying what it is right now.  Ive made peace with what she has and have accepted it.  Now were going to fight it and kick its ass!!! smile (thats my Brooklyn additude coming out)

Anyway, just wanted to give you all the update and let you all know what was going on.  Thanks again for all the advice you have given us so far (im sure we will need much more along the way). 

Hope you all had a great holiday and a happy 2010!!!!

8

(8 replies, posted in General Discussion)

Ok, mom starts her chemo tomorrow.  I am trying to stay positive as she is young, in relatively good health besides this and focused and determined to beat this.  Of course shes scared as we alll are. 

My question is she is scheduled for 6 cycles of chemo and then a scan to see if anything changed.  My question is what if its bad news, what if the tumors grow, and there is nothing more the doctors can do???  Will the doctor walk in that room and tell us that my mother is going to die?? Can we stop him from doing that?? My mother has suffered from clinical depression her whole life and for her to be told something like that would most likely result in her not dying with dignity but dying despair .  I cant see her go like that and neither can the rest of my family. 

Has anyone else done this??  Im hoping for the best and even a few months of things going well for her but I just know want her to ever think its over.  That alone would kill her.  Thanks

9

(17 replies, posted in General Discussion)

I will be praying for a great scan!!! Fingers crossed!!! smile

Hi Scraggles

Your situation sounds alot like my moms.  She is 62 and was diagnosed in Dec after an unsuccessful surgery.  Mets found on both lobes of the liver.  She starts the same type of chemo as your mom on Thursday morning.  Right now though shes tired alot, in alot of pain (from the surgery) and just feeling kinda down.  Hows she doing with the chemo?  Thats what we are all nervous about with my mom... keep us posted!!  God Bless!

11

(20 replies, posted in Good News / What's Working)

That such great news!!!!   Have a Merry Christmas!!

12

(15 replies, posted in Introductions!)

Hi and welcome.  My mother was recently diagnosed with stage 4 cc.  She was in NY consulting with Sloan and did have surgery.  Unfortunetly, once they got in there was mets on her liver.  Everything is still small, no huge tumors and like you sad she pretty much feels fine.  Shes still sore from the surgery but is going to be starting the same type of chemo as you on Dec 31st.  She lives in Florida and is having her treatments at Moffitt Cancer Cener.  We are also consulting with Mayo Clinic. 
I wish you the best.  You sound like you have a great additude and alot to live for and I have read stories on this board of people with stage 4 kicking it and living their lives.  There is always hope.  Please keep on posted.  Have a great holiday.

13

(4 replies, posted in General Discussion)

I would like any recommendations for physicans in Florida that have dealt with this.  I liked Dr. Springett but from what he said he seemed like this combo of chemo was her only choice and if that didnt work then there was nothing else.  That scared me because I never want to give up or have her give up.  The other thing that scared us was that he used numbers and percentages and my mom cannot hear things like that.  I believe that no one is a number and no one should be looked at like a statistic.  Ive read many stories in which people had no treatment and survived longer then expected.  I expressed this in the examination room before he could continue with his speech on percentages.  He got the point and stopped talking about it. immediately and was great from that point.  Thank you all so much and please anyone with recomendations for Florida doctors that would deal with this type of cancer would be great.  In the meantime we will start chemo on Dec 31st with hopes of good results.

14

(4 replies, posted in General Discussion)

Hi.  Well we took mom to Moffitt in Florida where we met with Dr. Springett.  He was highly recommended in treating this type of cancer.  When we sat with him he was very formal, and told us exactly what was happening.  Stage 4 Bile Duct Cancer (cancer had spread to both sides of the liver).  He recommended chemo (combination of Gezmer and something else that starts with a C) they will do it once every two weeks and then scans to see whats happening.  The klatskin tumor was 1.2 c and the growth on the liver was 1 to 1.2 c.  very small but still not the best news to hear.  Once he told us what is was and the stage, he gave us the game plan for treatment and told us about success stories that he had.  My mom cryed at first but then told me she was going to fight this with everything she has and that its in Gods hands. 

Mom is down from 139 in October to 116 pounds.  Goal is to get her weight up alittle and get her strong for chemo.  I am still going to  get another opnion from Mayo as nothing has spread beyond the liver. 

Im upset and disapointed.  Feel like its been nothing but bad news since November and I know we have a tough rough ahead of us.  Im hoping for the best and will try and just be there for her and get her through this, whatever the outcome.  Thanks for all the postings as I have learned so much from this website.  I will keep everyone updated on whats happening with mom. 

Thanks again

15

(6 replies, posted in General Discussion)

My sister is in NY and my mom is there now.  Shes saying she wants to come back to FLorida but Im not sure where to start.  We live in the Tampa Bay area.  I feel more comfortable having her go to Sloan-Mt. Sinai but its her decision.  Im just trying to find her the best down here.  Thanks

16

(6 replies, posted in General Discussion)

Hi Everyone

My mom is currently in NY where she had an unsuccessful surgery.  Once the doctor went in, he saw tiny spots on the top of her liver and could not do the surgery.  He said chemo is her only option at this point.  She has an in at Sloan in NYC but unfortunatly she lives in FLorida and wants to have her treatments down there. 

Does anyone know of any doctors or hospitals in Flordia that have dealt with this type of cancer and what has been your experience.  I would rather her stay in NY for this, but you cant force her to stay if she doesnt want to.  Going to keep trying to have her stay there but just in case I wanted to have some doctors lined up here for her. 

Any help will be appreciated.  Thanks

Toniann

Perfect timing. I JUST received an email last night  from DR. Myron Schwartz at Mt. Sinai in NYC. He was very helpful when I was researching resection vs. transplant for my mother this past summer. I emailed him again regarding my mother's sucessful transplant at the Mayo. Here is part of his email response:


"We have decided to establish a transplant protocol here in NY, a collaboration between Memorial Sloan-Kettering and Mount Sinai wherein patients will receive the neoadjuvant treatment at Memorial, and the transplant (usually living donor) at Mount Sinai. "

I don't know how soon this collaboration is starting, but if you are already at Sloane, it would not hurt to ask them about this joint venture. I was so happy to receive Dr. Schwartz's news because this opens up options for CC transplants in the Northeast :-)

18

(7 replies, posted in General Discussion)

My mom has a growth in the bile duct but when the doctors went in to do a ressection they saw what looked like sand sized spots on the top of the liver.  The surgeon advised us that chemo is our only option at this point.  I read other stories on this message board about people having 80% of their livers taken out, I dont understand why he couldnt do it.  Is there something I could be missing?

For those of you who may have experience with the Mayo Clinic in Jacksonville, what has your experience been?  Im not sure if my mom should come to FLorida or stay in New York and consult with Sloan Ketterin again. 

This is a nightmare!

If the bile duct cancer has just spread to the liver (top of the liver), does that still allow aomeone to be a candidate for a liver transplant.  I read such great success stories from Mayo but wasent sure about the process of actually getting one. 

What is generally the criteria for a liver transplant?