So happy to hear of the shrinking of tumors! I think you will be so happy with the port in place. Please keep us posted on how everything goes this nest go around.....sending prayers for shrinkage of the next 2/3rds!!
Melinda

2

(75 replies, posted in Clinical Trials)

Dear All,

I had my checkup at NIH this past Tuesday. I am very happy to report that there is absolutely NO change from January. The reactive t-cells are still present in my circulation and keeping the cancer in check. I will return in another 3 months or so and have a PET again to compare to the one I had in January. I can't tell you how grateful, happy and relieved I am, after January's check up I have been a bit nervous!

So to date it has been 30 months since last treatment. I am not cancer free, but can live a great quality of life. I am very happy with these results and hope for others to have them as well. I know that a colon cancer patient has made her official partial response in this treatment. I believe there is a cc patient who has been stable for 4 months now......more hope.

I was able to meet Chris and Laura in person at NIH this week and enjoyed getting to know them in person. Chris posted his story in this thread a few posts up.

All my best,
Melinda

I said those exact same words....."Thank you God and thank you Dr. Rosenberg!!!"

Great videos!

4

(3 replies, posted in Introductions!)

Dear Virginia,

Welcome to the discussion boards and thank you so very much for sharing your story. I am so very sorry and saddened about the loss of your baby girl......my words can't express it enough.

Please keep us posted with how you are handling chemo and with any updates. We are here to help and support in any way we can. Hugs and prayer sent to you.

Melinda

5

(4 replies, posted in Insurance)

Sounds like a great plan! So happy for you! smile
Here is to new beginnings! Take care!
Melinda

6

(7 replies, posted in Members' Cafe)

Hey Brigitte,

I know how you feel......I personally think it is normal to go through some low times. The key is not staying there. We are human, we get scared, we get depressed, we get anxious. It goes with battling the unknown of this disease.

I am going on six and a half years, I have had resection, recurrence, chemo treatments, clinical trial with great results but now find myself at a point where it looks to be growing again.......scans on April 18th and results on 19th. I have been a little depressed lately too. I have two girls graduating high school in May, family coming this summer, a high school reunion I am looking forward to.....and all I can think about is how I just don't have time for this DAMN cancer!!!! smile And when it comes to feeling like an old fat sausage......I get it!!  I would add Old, Fat, and Wrinkled Sausage!

So I take a deep breath and realize it is what it is...... I rely on my faith, family, friends, medical team, BUT ultimately it is up to me how I want to live my life, and as long as I am breathing, I am living! So I do what I can, the best that I can, and I let the rest go. I also have a very dear black lab who is near and dear to my heart, he brings me much joy when I am sad. I pray that you find a way out of this depression, but please don't feel alone, we are here for you!! Love, hugs and prayers coming your way!
Melinda

Awesome info......thanks Karen!

8

(5 replies, posted in Introductions!)

Dear Carla,

Welcome to your first of many posts, I hope! So glad to hear your hubby is doing well, and getting great care at MDA. Please keep us updated with all his progress and please know we are here to support you both in anyway we can. Hugs and prayers headed your way.
Melinda

9

(6 replies, posted in Introductions!)

Hi Paul,

Welcome to the discussion board. Sorry to hear about your wife's diagnosis. What has she had for treatment? Any chance she has had genetic testing done on any biopsy samples? Please know we are all here to support in anyway we can.  Take care!
Melinda

10

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

Congratulations on surgery! That is great news, sending lots of good thoughts, hugs and prayers your way! Please keep us posted on your husband's results and recovery! Looking forward to great news.
Melinda

So happy surgery is scheduled! Sending lots of good thoughts and prayers your way for both of you. Please keep us updated!
Melinda

I too, welcome you to these discussion boards. Please seek another opinion with Vanderbilt as Marion suggested. It is so crucial to see a team who have experience with cholangiocarcinoma. Request your records be sent asap. Please keep us updated on your husband's progress and let us know if we can help in any way. We are all here to support you. Take care, hugs and prayers sent your way.

Melinda

13

(43 replies, posted in Introductions!)

Dear Georgia,

I too, welcome you to these discussion boards but am sorry you are here. I feel the love you have for your mom, and I recognize the frustration of this stupid cancer. Please keep us updated on her progress and know we are here to support you and your mother in any way we can. Please take care.

Melinda

Thanks all, it was definitely my privilege to represent the most amazing people in the world!! I can't help but be biased to cholangiocarcinoma patients and care givers! 

Melinda

Highlights from Rare Disease Week 2016

I spent four days in DC for the Rare Disease Week on Capitol Hill. I highly recommend participating in these events, especially for anyone in the area. All events are free to the public and just require registration. There was the opportunity to apply for $600 travel stipends given to people who traveled from distant states. The days are filled with information that is valuable for being proactive with legislation and what you can do to make a difference with gaining the support of your state legislatures. I believe there were around 300 people in attendance.

The first day was held out at NIH, Rare Disease Day at NIH. There were several speakers lined up for an informationally packed day. It was the first time in four years I was at NIH for something other than a medical appointment! We heard from the NIH director, Dr. Francis S. Collins, the Office of Rare Diseases Research, and NORD to name a few. They offered tours of the clinical center at NIH and provided a small poster session. The highlight for me that day was hearing Senator Hatch (R-UT), and Senator Klobuchar (D-MN) speak about the Rare Disease Congressional Caucus. They both co-chair this caucus and emphasize that the Congressional Rare Disease Caucus provides a vital platform for discussing pressing policy issues and giving rare disease patients a voice in Washington, D.C.

That evening we were shuttled to the U.S. Naval Heritage Center for a cocktail reception and a screening of the documentary “Dusty’s Trail”. I was able to meet up with two other cholangiocarcinoma advocates, Doreen Darsh, and Brandon Leonard. (photos attached) Doreen’s son passed from cholangiocarcinoma at the age of 28, and Brandon’s father passed from cholangiocarcinoma after a short two month battle.

Tuesday was a long conference day filled with information on legislation. It prepared us for Wednesday, which was our day to visit with our legislators and ask for their support. We were briefed on what to ask for, how to tell our unique stories in a short time frame, and why it is important to build relationships with our senators and representatives. The conference day was meant to help you network, make new connections, and strengthen the rare disease community.

Wednesday started bright and early with a Lobby Day Breakfast where the newly confirmed FDA Commissioner Dr. Robert Califf spoke. I did not attend this breakfast because I was invited to a private Montana breakfast and was told this was a great opportunity for advocating. The Montana Coffee is held every Wednesday morning, and now that I know about it, I will be attending it when I am in the area. The breakfast provided a jumpstart on connecting with the senators and representative from my state. Quite an amazing opportunity, and really made me wish I had paid more attention to government classes in high school!! (photo attached)

We then had set appointments to meet with our legislatures privately or their aides. First stop was Senator Tester’s office where we met with his aide, Monica. We told our stories and I emphasized the importance of NIH funding and what it has done for me personally. We asked for support of the Orphan Drug Act, The Patient Focused Impact Assessment Act, and asked for him to join the Rare Disease Caucus.

Next stop was Representative Zinke’s office, we met with him personally and repeated our stories and asked for support in the Orphan Product Extensions Now, Accelerating Cures and Treatments, Rare Disease Fund Act, and to join the Rare Disease Caucus.

Final stop of the day turned into a bonus for us. We met with Senator Daines, told our stories and made our asks. He shared his personal story of losing his sister to PSC, she passed while waiting for a liver transplant and left four children behind. He was quite surprised when I told him that PSC is a risk factor to cholangiocarcinoma. He was very personal, kind and easy to talk with. He was on his way to vote in the Senate and asked if we would like an impromptu tour. We were overjoyed with excitement and felt like we had a little VIP treatment. We were able to look in on the senate floor and he showed us a room right next door to the senate called the Mansfield Room, which is named after the longest acting senator from Butte, Montana. Great day!!!

Thursday was a briefing on The Rare Disease Caucus. We again heard from the co-chairs of this caucus: Representative Leonard Lance (R-NJ), Representative Joe Crowley (D-NY), Senator Orrin Hatch (R-UT) and Senator Amy Klobuchar (D-MN). The day ended with a Rare Disease Artist Reception in the foyer of the Rayburn House Office Building.

All in all it was very informative and I learned so much. Please watch for upcoming legislation that will affect us and don’t be afraid to call or email your state legislatures and ask for their support.

“Never doubt that a small group of thoughtful, committed, citizens can change the world, indeed, it is the only thing that ever has.”  Margaret Mead

Sincerely,
Melinda Bachini
Patient Advocate
The Cholangiocarcinoma Foundation

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16

(349 replies, posted in Introductions!)

Best News EVER!!!!

Awesome news Catherine!

Keeping both your mom and dad in my prayers!

Melinda

18

(4 replies, posted in Insurance)

Hi David,

I feel your pain. I loved my job, and I miss it terribly. I was a paramedic. Unfortunately, I could not keep up  with the long shifts and the chemo brain scared me, I didn't feel like I was able to make split second decisions the way I used to. I had hopes of returning but for now this is my new reality. I sometimes have a small pity party for myself, as I feel sometimes a part of me is missing. I just had to change my mindset and choose a new direction. I focus on how grateful I am for the time I have spent at home with my children and the passion being a patient advocate has brought me.

Them money side of it stinks but we tightened up our belts, and honestly I don't feel deprived. You will know when you are at the point for that decision. Sending tons of hugs and prayers your way!

Melinda

19

(6 replies, posted in Hospitals)

Hi Jennifer,

I want to welcome you to the discussion boards, and good job on being a proactive advocate for your mother! I would suggest posting your introduction again under the introduction section so possibly others will see it and be able to chime in with some advice on surgeons in that area.

I highly recommend going ahead with a second and possibly third opinion. Always better to have more expert advice. Key being expert in cholangiocarcinoma. Good luck and please keep us posted.

Sending hugs and prayers your way.

Melinda

20

(9 replies, posted in General Discussion)

Dear Nancy,

I too, would like to express my sadness for Ron's passing. Prayers for strength, comfort and peace are being sent to you.

Melinda

Hi David,

I always tell people to give NIH a call. A phone call never hurts anything and they can tell you what is all available in regards to trials. Unfortunately, for the trial I am in, you do have to fail first line of chemo, and having an internal stent in place disqualifies you from the trial as well because the risk of infection is so high when your immune system is depleted prior to cell infusion. Here is the link to the trial, plus the new addition of pembrolizumab, and pembrolizumab alone. I still recommend calling to find out more information and if anything has changed.

https://www.clinicaltrials.gov/ct2/show/NCT01174121

http://clinicalstudies.info.nih.gov/cgi … -0166.html

https://clinicaltrials.gov/ct2/show/stu … 7#contacts

Best wishes to you!  Sending hugs and prayers your way!
Melinda

22

(6 replies, posted in General Discussion)

Glad you are feeling hope again! That is all we ask for as patients.....a little hope for the future! Looking forward to hearing more info on the immunotherapy trial. Hugs and prayers headed your way!
Melinda

23

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

Great news! I also have "dead" tumors in my liver.......as long as they stay dead, they can hang out all they want!!!
Melinda

Thank you Carl for the information and please pass on to your daughter how grateful I am at her efforts to help make a difference for patients  and families like ours! Truly grateful!
Melinda

Very interesting article.