Advanced CC patient – just diagnosed

This topic has 15 replies, 14 voices, and was last updated 15 years, 7 months ago by violarob.

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April 6, 2009 at 4:26 am #26608

violarob
Member

Dear Elizabeth: Welcome! This discussion group is great. Lots of first-hand information, the best kind. The drugs you are taking (gemcitabine, pantimumubab) are the absolute newest drugs and are showing high levels of effectiveness. I hope they work for you! If you feel you want a second opinion at some time, I highly recommend MD Anderson Cancer Center. They have a team called the “Liver Tumor Study Group” made up of oncologists, gastrointerologists, radiologists, surgeons etc who do nothing but treat liver tumors. They have TWO doctors on the team who specialize in cholangiocarcinoma.

Please keep us informed of your progess, and best of luck to you!

Violarob in Texas.

April 3, 2009 at 2:15 am #26607

vickyp
Member

My friends bili is 0.4 – not 4. oops.

April 3, 2009 at 2:14 am #26606

vickyp
Member

I am so sorry to hear about your recent diagnosis. You seem to have a great attitude and I hope that helps. I am looking around this site because I too am a doc (pediatrician) and have a very close friend – 55 yo woman who was diagnosed in early Feb with CC. 13 cm tumor in her liver, multiple smaller liver lesions and pos nodes elsewhere. She is at Mass General and is doing very well after 3 cycles of Gemcitabine and oxaliplatnum. Bili was 2.8 now 4, Alk Phos 650 now 200, AST/ALT approx 130’s and now 40’s. And she feels great. She is also getting lots of acupuncture and taking chinese herbs.
I am interested in hearing more about your treatment especially the pantimumubab. Best of luck with it all.
I am sending all my best wishes and prayers to you and your family.

February 28, 2009 at 4:49 pm #26605

devoncat
Spectator

Elizabeth & Rosemay,
Welcome, welcome welcome to our family. I wish both of you the best of luck on your treatments. This is a great site and you will find loads of information and a place to vent, laugh, and cry. We are great at answering questions and offering support, so come in and pull up a chair.

Please let us know how things progress.

Kris

February 28, 2009 at 2:00 pm #26604

darla
Spectator

Elizabeth & Rosemay,

I also would like to say that I think you both have great, positives attitudes. I am hoping for the best for both of you.

Darla

February 28, 2009 at 1:16 pm #26603

duke0929
Member

hi elizabeth welcome and best wishes to you …not sure what happened at sloan but we also had bad experience there…my wife also was the picture of health …strong and viberant, and even today she looks the picture of health….a simple blood test told us differantly…she has had the traditional chemo(gemzar) and that kept it stabile, a stent and most recently the sir-spheres procedure at mt. sinai…if you wish i have all the info you would need about the procedure plus all the names of specialists you would need to see at mt .sinai…you can e-mail me or just post that you are interested and ill give you their names…they have been very caring and helpful in treating this monster…and right now she is doing very well…thank god…in any case best wishes and good luck to you….ron

February 28, 2009 at 12:57 pm #26602

jclegg
Member

Elisabeth, and RoseMay,
Welcome to our site to both of you. It sounds like both of you have great attitudes about this fight ahead. Elisabeth, the clinical trial sounds promising, and RoseMay – you are so right – staying in the best possible shape is critical. Keep us posted, and we will be rooting for you both.

Joyce C.

February 28, 2009 at 8:50 am #26601

rose-may
Member

Hi Elizabeth. I too have been the picture of health and this came out of nowhere. One of my strategies to cope with this devastating diagnosis will be to try to keep myself as nourished and active as possible so the rest of my body can be strong enough to compensate. Don’t know if I am deluding myself but we have to try everything. I am also trying to use as few drugs as possible, so far just a 5-day antibiotic because of the stent and occasional pill for the itching and sleep deprivation.

Rosemay

February 26, 2009 at 12:34 am #26600

darla
Spectator

Elizabeth,

I can only mimic what everyone else has already said & welcome you to the site. I am sorry you need to be here but am glad that you have decided to join all of us. I will be hoping for the best for you with the clinical trial. I will keep you & your family in my thoughts & prayers.

A lot of hugs & love,

Darla

February 25, 2009 at 10:32 pm #26599

marions
Moderator

Elizabeth….I also wanted to welcome you to this site. I remember Peter’s posting a few years back: “Welcome to the club no one wants to belong to” and I like to add to that: And, I am so glad that you have found us.
Good luck with the clinical trial, I will be thinking of you and am sending my warmest wishes your way. Also, you might want to make sure for your bowels to be moving, regularly, as that seemed to have helped my husband with the nausea he was experiencing. In fact, you might want to use the “search function” on top of the page to read up on previous postings discussing this issue.
Hugs to you and your wonderful children,
Marion

February 25, 2009 at 9:20 pm #26598

jur777
Member

Elizabeth – Like everyone else, I send you best wishes. I wanted to comment on your experience with Memorial Sloan Kettering re: Cholangio. When I was first diagnosed, my local gastroenterologist recommended I see someone there. Before I got the chance, my gastro and the doctor he recommended spoke on the phone and I was quickly referred to Mayo Clinic in MN, thinking they see more CC cases and have more advanced techniques.

After Mayo, I was looking for east coast locations for microsphere treatments (SIRspheres or Theraspheres). MSK does not (at the current time offer this). So, through my own experience and thoughts, it seems that although Memorial Sloan Kettering may be a great place for many different types of cancer, it does not seem to be the most advanced place for cholangiocarcinoma. Even Mount Sinai in NYC seemed to be a bit more up to date.

Again, this is all my personal opinion.

February 25, 2009 at 9:19 pm #26597

cherbourg
Spectator

Welcome Elizabeth,

I’m sorry you had to find us but I’m so glad you did. You will find some of the most amazing, compassionate people on this site.

We are all only a keystroke away. You and your children will be in my thoughts and prayers.

Hugs,
Pam

February 25, 2009 at 8:25 pm #26596

tess
Member

Hello to you Elizabethgenovese & welcome! I’m glad you’ve found the crew…. The members here are able to provide a wealth of information & support, for whatever the issue may be. My Dad was diagnosed with cc just a few weeks before yourself, and we are just 3.5 hrs. down the road in the Binghamton NY area. Best of luck to you as you start the new clinical trial at Penn next week — please keep us posted on how you’re doing. You and your family are in our thoughts.

Best,
Tess

February 25, 2009 at 7:19 pm #26595

glightfoot
Member

Hi elizabethgenovese,

Welcome! I’m so sorry to hear of your diagnosis.

It sounds like you have a good handle on dealing with the side effects — with pain meds and anti-nausea meds. The clinical trial sounds very promising. I hope you’ll keep us posted on how it is going for you.

G

February 25, 2009 at 6:57 pm #26594

lainy
Spectator

Hi back at you and so sorry you have to join this best little club in the world that no one wishes to join. You are so right that attitude plays a huge part. Sounds like you have hit the game running and hope your clinical trial is a success. Please visit us often with updates, suggestions or to just let off some steam. This is a wonderful, courageous group of people ready to help in any way they can. Thinking of you.
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