Posting question for soon to be new member…pending forum approval

[newjersey1]

Thank you Marions, we are very nervous and don’t know what to expect of all this..

[marions]

Newjersey…..congratulations, fantastic news. Numerous members on this site can and hopefully will share their experiences with you.
Hugs,
Marion

[newjersey1]

Hi everyone, you are all in my prayers.. Update on my dad, he went to Sloan and is a candidate for the surgery., the whipple.. Just wondering if anyone here has gone through this and what we can expect..he is scheduled for July 25th at Sloan.. Thank you in advance.

[marions]

Tricia….I am thrilled for you. Are you experiencing any side effect? Tricia, are you aware of the ongoing thread pertaining to this study? Feel free to add your personal comments as well. http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=14084

Regarding the American Cancer Society, how did you make contact and what are the requirements you met in order to obtain the benefits?

Hugs,
Marion

[triciab]

Marion,

Thank you for your warm wishes. I consider myself very lucky right now to be doing so well.

I am enrolled in the phase II trial of Agios AG-120. Here is a link to the trial:

https://clinicaltrials.gov/ct2/show/NCT02073994

Regarding the transportation discount, I had heard about it through friends.

[marions]

Tricia….Congratulations on the fantastic response to treatment. Also, I like to reiterate Lainy’s comments in thanking you for the kind response to Joe while sharing some great information with us all.
If you don’t mind my asking, what trial are you participating in?

I am pleased to hear of the fair discount extended to you. How did you go about it?

So happy you joined us and again, thanks for your kindness.

Hugs
Marion

[marions]

Joe….nice to meet you. I hope others will follow Tricia and chime in on your request of names and physicians. In the meantime you may want to take a look at the member established listing “physicians/treatment centers”
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=44

It’s a bit overwhelming and some postings go back to 2009, hence you may want to begin with the last page.

Hugs,
Marion

[lainy]

Dear Tricia, welcome to our remarkable family and so happy to hear of your success and you are truly already a huge help on this Board. Wishing you much good luck and more good news on your CC journey. Please do keep us updated on your continued success as we truly care. Below is a site you may find helpful for new members. Looking forward to your next post.

http://cholangiocarcinoma.org/newly-dx/

[triciab]

Hi Joe,

I am also live in NJ and I now receive my care from MSK. My oncologist is Dr. Maeve Lowery and I can’t say enough good things about her and her team. I also had experience with Dr. Jarnagin. Dr. Jarnagin implanted a pump that supplied high doses of FUDR chemotherapy directly to my liver. This was done after the standard of care of gemcitibine and cisplatin stopped being effective. Dr. Jarnagin’s surgical team and the care at MSK has been amazing. ( The liver pump therapy worked for 7 months until the cancer spread beyond the liver.)

As you are learning about this rare cancer, I would recommend that you have your mom’s tumor genetically sequenced. We chose MSK and Dr. Lowery specifically because she is involved in trials for my mutation, IDH1.

I am now on an IDH1 trial medication and I am happy to say, 2 years from my diagnosis, that I am feeling great.

PS – I commute to NYC via the Seastreak ferry. The American Cancer Society was able to get me a discount card for 1/2 price fares for me and a companion while under treatment. They may also offer discounts for other types of transportation.

[newjersey1]

Hi everyone, my name is Joe and I am the son of the person daisy is talking about, anyone with any info on great doctors please pass this along . Thank you all in advance and we will be praying for all of you.

[marions]

Daisy…..how kind of you to initiate this connection on behalf of your friend. Hello, new friend. Please know that you should receive approval by tomorrow. If not so, then please let me know.

I wish for others to chime in as well, but from my perspective, the physicians mentioned are top experts in the field of cholangiocarcinoma. Your friend’s father will be in excellent hands.

BTW: Dr. Ghassan Abou-Alfa & Dr. Eileen M. O’Reilly, husband and wife, co-authored the biliary book available for download on our site: http://cholangiocarcinoma.org/news/publications/

Hugs,
Marion

[daisy]

A new friends father has been diagnosed with Cholangio. She has registered to be a member of this forum but is waiting for approval. I offered to post this question knowing she would be able to read everyone’s responses. This is all brand-new to her and I told her the forum would be her number one source of valuable information. She is looking for guidance in choosing which hospital to work with. She was referred to Sloan-Kettering. Her father lives in Nutley, New Jersey they are 20 minutes from Manhattan. One surgeon that was already recommended from Sloan is a Dr. Jarnagin for the oncologist Dr. O’Reilly. Any thoughts or personal experience with any of these doctors or perhaps recommendations for any others would be greatly appreciated.

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