(11 replies, posted in Members' Cafe)

Dear Duke,
I love your post! I always pray that everyone on this journey reaches this point sooner rather than later. We do have a future and I will take whatever God has in store for me. He is the author of my book....so I am pretty sure it will be a good read!! Thanks for the positive post! Go for the Grand Canyon!!!

Yes...Amen to that! Last round....last chemo!!! Go Julie GO!!

Dear Kevin,

My deepest sympathy for the loss of your dad. I have not had the experience of losing someone to this disease....just the experience of fighting it. Many a night I have laid awake wondering how my end would come or look to my loved ones....I am sorry for the pain and anguish you witnessed. I only pray that you find some comfort in peace in knowing your father is no longer in pain.

Your post makes me want to fight harder to win this battle, to keep hoping for more treatments and quicker diagnosis. I want to live to see the day that children will not have to witness their parents die to this and especially for the parents to not have to witness their children die from this disease. Prayers for you and your family.....
Melinda Bachini

Great news, I am so happy for you and your husband!! Celebration in order for sure!! Keep us posted and I will keep you two in my prayers.
Melinda B.

Dear Julie....I agree, go to the ED and try and get to the bottom of this! Praying and sending positive thoughts your way.....and you are STRONG! It is ok to be scared when things are out of your control. Hang in there...Melinda

Dear Reacher,

I have heard of some people using Nplates, I have not....here is a link and might be worth asking your doc about.

I was given several platelet transfusions after my treatment at NIH, but mostly it just took time for my body to kick into gear and produce them on my own. Keep us posted and sending high platelet counts your way!!

Dear Caroline,
I too want to welcome you to this site. I can't advise on this matter as I have no experience with stents but I am sure others will chime in who do. Please hang in there and I will say a prayer for you and your dad. Please keep us posted on your father's progress....take care.

Dear Cholangotango,

I have not at this time heard of the results of the most recent treatments of the TIL trial, but I will see what I can find out. I do know that there is a cholangio patient who is due to have treatment in about a week. She had tumors resected from her liver and she tells me her cells are growing, of course her outcome will not be determined for at least 2-3 months from now. The treatment takes a month....and then first checkup a month after that, but truly they wait for the 2nd month checkup to consider it is working. I am praying so hard for success for her! I have asked her to share her experience with us on the board as well and I believe she will.

I also know of lady with colon cancer who is due to repeat the TIL treatment soon....with very promising outlook. It sounds like they were able to narrow done her t-cells with a good response to mutation as well.

Thanks for the info on your dad's trial....positive thoughts coming his way! Keep us posted!

Dear Cazgirl,
I too, am so sorry for the sudden passing of your husband. I can't even imagine going through that so fast. I also wonder about passing this horrid disease on to my children....but I try not to let it consume my thoughts. Knowledge is power....it is good to know as much as we possibly can and to be aware for the future.....but to continue to live everyday to the fullest!  Blessings!
Melinda B.

Dear Julie,
Wow girl.....you have been through the ringer. I sense how strong you are and I personally think you are making the right decision to sit out the chemo one more time.

You brought back some dreaded memories for me today....the weight gain....I literally gained about 25 pounds on the gem/cis  combo as well.....the swelling.....my feet and legs used to swell quite a bit as well, especially in the summer heat. I absolutely DO NOT miss that chemo cocktail!

Hang in there....you are amazing and strong and I am praying for you!!
Melinda B.


(11 replies, posted in General Discussion)

Dear Rob,
Sending positive thoughts and prayers your way for the next CT in September to be clear! Keep on living your life everyday! Please keep us posted and know we are thinking of you!
Melinda B.


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


That is so awesome and so very inspiring!! Thank you so much for the good news today.....I was in need of a bit of a pick me up and you just gave me one!! Congratulations on conquering three different battles! You are my hero! smile

Dear Sad,

I too, am so sorry that your dad has to go through this. He is added to my list of prayers. Sending lots of positive thoughts your way and huge amounts of hope!!
Melinda B.

Dear Melinda and Mary Beth,

I am keeping both your husbands in my prayers. I hope the wait is made shorter so the anticipation and anxiety will lessen. Please keep us informed of your results and sending all my positive thoughts your way!

Melinda B.


(4 replies, posted in General Discussion)

Thank you so much for sharing these great tips and your experience. I know they will be of help to someone. I pray that your frustration will ease and that things will become easier as time goes on. You sound like an amazingly strong lady!! Take care of yourself.
Melinda B.

Here is a good explanation of sepsis from the Mayo Clinic...

http://www.mayoclinic.org/diseases-cond … n-20031900

Basically, a weakened immune system puts us at risk for an infection to turn into sepsis. I hope the antibiotics work quickly. Prayers to you both.

Dear Cholangotango,

It is a tango isn't it?   This dance we do! Love the name! I am so happy to hear the STABLE results from your father's first scan! It is always so inspiring to hear some good news coming from some hopefully new treatments....could you elaborate a little more on the treatment? How is it given? Side effects??   and any other pertinent info....please keep us posted on his progress and thank you so much for the information.

All the information on the web can be so scary and overwhelming. Each person is different and I don't believe for a second that we have an expiration date stamped on our feet. In the past almost five years that I have been fighting this disease I have never once asked "How long?" I have never wanted to know....because I feel strongly that none of us know how long. Each day is precious and a gift. I know it brings sadness and that is normal...nobody plans for this. You will find much support here.....prayers for you and your husband.

I am so sorry you have to wait....waiting can be so hard. I know you feel helpless but just being there for your mom is doing a lot. You are a good daughter! Praying for you and your mother.

I second that........prayers for good news!!!


(9 replies, posted in General Discussion)

I am sorry to hear the news of your husband. I am glad you will be contacting his surgeon, hoping that it is contained and resectable again if needed! Please keep us informed of the results and plans for treatment.....praying it is just an infection!

Congratulations to your father!!! That is great news. I am happy for the both of you. Thanks for sharing the positive results, please keep us posted and I will be thinking and praying for you both!!


(2 replies, posted in General Discussion)

Dear Samssons81....I don't know much about this treatment but I do know a husband and wife who just returned to the States from Germany today and did some form of hyperthermia treatment at a cancer research center. She did six weeks of treatment at the Hufeland Klinic. The wife is my age mid 40's and just diagnosed this past May with ICC. I know she had a resection but I don't have a lot of details. I encouraged them to be a part of this discussion board and will ask if they can post some more details for us all to learn!

Congratulations Julie on the great results! I hope your chemo break will give your kidneys a chance to recoup....definitely no fried kidneys allowed! Good luck with the toenail...those are ouchy little buggers!!

NIH is still recruiting. I encourage you to contact them and seek more information at the numbers and link Marion provided above.  I hope his levels mellow out and he will be able to continue with success....praying the pain and nausea diminish and go away!!!!