H Tze,

I am happy to hear your wife is getting better and recovery is going well. I am not able to give you any advice on whether to do chemo or not......maybe a 3rd opinion would be in order since you have two different suggestions. Hoping everything continues to go well and please keep us informed on how your wife is doing. Take care!
Melinda

2

(178 replies, posted in Introductions!)

Matt,

I was one that never had the rise in that marker...it stayed normal even when my tumor was huge in my liver. The only time it went way up was as you described in the above article...after my immunotherapy treatment and the tumors were shrinking.


Melinda

Daisy,

I had a recurrence 3 months post resection with metastasis to my lungs. I did Gem/Cis chemo for 6 months, Gemcitabine alone for about 3, and then Taxotere for another 6 months  before finding the immunotherapy trial at NIH.

Seek a second opinion if need be and continue to ask questions. You are a great advocate for your mother. Sending hugs and prayers your way!

Melinda

4

(19 replies, posted in Introductions!)

Dear Sherri,

I also would like to welcome you to the board. I am sorry about the results of your chemo. Did you have genetic testing done? That might be something to ask about as you are seeking other opinions. Please don't lose hope. I have been fighting for over five years now......had resection, Gem/Cis, Gemcitabine alone, taxotere, and currently doing extremely well on an immunotherapy trial at NIH.

Please keep us posted, and I hope you will take Matt's offer and meet up with him, there is strength in numbers! Hugs and prayers coming your way.

Melinda

5

(15 replies, posted in Members' Cafe)

Thinking of you Duke and sending lots of prayers your way for Monday!

6

(6 replies, posted in Hospitals)

Balwas,

I can't really help with your decision but feel they are both great choices. I went to Mayo in Rochester about 5 years ago for a second opinion myself when metastasis to my lungs showed up 3 months after my resection. At the time they suggested the Gem/Cis chemo regimen for me, which was the same as my oncologist back home. It is always good to get a second opinion, thoughts and prayers sent your way.

Melinda

Daisy,

I had a resection in December 2009, with a reoccurrence in my lungs in March of 2010. I wanted to initially go straight to a clinical trial but my insurance wouldn't cover it so I did the Gem/Cis for about 6 months until toxicity set in from the Cisplatnin. I then did Gem alone, in which tumors started to grow. .....after that I did about 6 months of Taxotere until toxicity got to me once again. I then found on my own the immunotherapy trial at NIH....I did all the work, but agree with Marion that if your physician is on board it helps so much to have them involved in pursuing the clinical trial.

Melinda

8

(20 replies, posted in General Discussion)

Dear Ruali,

I am so deeply sorry for the loss of your mother and brother. I can't imagine how painful it is to lose two family members so close. Please know that I am praying for strength, comfort and peace for you and your family.....hugs to you.
Melinda

9

(6 replies, posted in Hospitals)

Dear Balwas,
Welcome to this site, and sorry you had to find us. I am sorry about your wife's diagnosis.
The following link has a list of major hospitals who have Tumor Boards and Multi-disciplinary teams......
http://cholangiocarcinoma.org/for-patie … r-centers/
this would be a great place to start looking.

I would also encourage you to post in the introduction section, so others would have a chance to jump in on this topic as well. Please know we are all here to support you in anyway we can. Take care.
Melinda

Thanks Darla!

Here is the link to the video.... and all the other videos from the conference.
https://www.youtube.com/channel/UCBa2G8 … 5kIuXgQi1w

Wow, not sure, it was there earlier today.

Julie,

I am beyond happy for you! Such great news! Now you can breathe easy and get ready to spoil the newest grand baby!! Lots of hugs sent your way!
Melinda

14

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

Wonderful news! Enjoy your family everyday....so many blessings!!

Dear Onlyone,

I have been involved in the immunotherapy trial at NIH for the past three years, unfortunately it does require travel to Bethesda, Maryland. I still would highly recommend giving them a call and asking if there might be trial recommendations near you! The link to my trial is here and there is a contact number at the bottom of the page. Hope this helps!

http://www.cancer.gov/clinicaltrials/se … d=11220695

Melinda

I just wanted to share the link to my journey from this years' conference. I apologize for the lack of ability to public speak, but will gladly embarrass myself if it will help or bring HOPE to others!

https://www.youtube.com/channel/UCBa2G8 … 5kIuXgQi1w

Melinda

17

(178 replies, posted in Introductions!)

Dear Matt,

I recall being in a fog, sometimes I still am, for about the first couple days after chemo. I continued with the antiemetic meds for about the same couple of days, which they always make me groggy. Then I was okay until the next chemo. Hang in there and keep up the positive attitude! Sending thoughts and prayers your way!
Melinda

Dear Henrietta,

I also would like to welcome you to this site and thank you for sharing your brother's story. What a story it is....one of never giving up! I will add him to my prayers, and certainly pray for a clinical trial that will show amazing results for him! Please keep us updated on his progress!
Melinda

Dear Mizzey,

After the regimen of Gem/Cis, I did Gem alone which resulted in growth and spread of tumors. I then did Taxotere for about 6 months which also held it stable, but once again the toxicity built up. My saving grace has been an immunotherapy trial......but my point is ....there is always HOPE. Here is the link to my story that I told at the Cholangiocarcinoma Foundation Conference this year. I apologize, I am not a public speaker by any means, but will happily embarrass myself to help bring hope to others.

https://www.youtube.com/watch?v=tkG_Xchqfjw

Keeping your sister in my prayers!
Melinda

20

(14 replies, posted in Introductions!)

Dear Catherine,
I also would like to welcome you to this site. I am sorry to hear of your mother's diagnosis but would also like to add that we are definitely not statistics and there is always HOPE for tomorrow!

I have been fighting intrahepatic Cholangiocarcinoma for over 5 years, was diagnosed at age 41. I have 6 children ranging in age from 26 to 13, and I know how hard and scary it was for them in the beginning. They were and are a huge support to me, as it sounds like you are to your mother.

I will be thinking of you and your mom, and adding you to my prayers. Continue to ask questions, and seek 2nd opinions, especially for follow up on scans after chemo. Please keep us updated and don't hesitate to come here for support or questions....there is a wealth of information available here for you.

Hugs and prayers,
Melinda

21

(12 replies, posted in Introductions!)

Fred,

Here is the link to the clinical trial
http://www.cancer.gov/clinicaltrials/se … d=11220695

There is contact information at the bottom, and I encourage you to contact them and gather more information. I will let you know that in order to qualify you have to have failed the "standard of care" therapy, which in my opinion is ridiculous in this disease. You also would have to have resect able tumors in order to harvest the cells. I can tell you that they are working very hard to perfect this treatment and I am hopeful for the future of immunotherapy......just wish it would happen faster. I hope this helps a bit. Thank you for your prayers!! They are the best medicine in my book! Take care....Melinda

22

(6 replies, posted in Members' Cafe)

oh Catherine, sending prayers your way! I am okay with flying....the worst for me is the landings....and coming out of Montana there is never a direct flight always double or triple the fun!! My brother works for the FAA and preaches to me all the time about how safe it is!! Have a glass of wine or two, put on your head phones and enjoy the ride! Have a fun and safe trip.
Melinda

23

(17 replies, posted in Introductions!)

Stevie,

Welcome to this site. You will find much valued information and support here. Waiting is so very hard. Please know we are here to support you in anyway we can. I will be sending good thoughts and prayers your way. Please keep us posted on your upcoming appointment.
Melinda

24

(24 replies, posted in Introductions!)

I saw the picture on face book....it was so awesome! Thank you for sharing!!!

Dear Mizzey,

I wanted to chime in on a few things....first, I think if the Gem/Cis is working and she is tolerating it without too much toxicity, I don't know why they would not continue. I did Gem/Cis for about 6 months with no shrinkage but stable results. The toxicity became too much for me. We are all so different and handle these treatments in different ways.

I, too, gained 30 pounds after starting chemo. I have to say that some of the blame was my attitude in the beginning and feeling like there was no hope. I thought that a diet consisting only of Reses peanut butter cups was a great idea!! In hindsight...it was not! The steroids had me eating nonstop and then caused some serious steroid psychosis......looking back it was quite comical but at the time, it was horrible!

I will keep you and your sister in my prayers.
Melinda