mbachini
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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!
MelindaDear 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,
MelindaFred,
Here is the link to the clinical trial
http://www.cancer.gov/clinicaltrials/search/view?cdrid=683241&version=HealthProfessional&protocolsearchid=11220695There 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
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.
MelindaDear 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.
MelindaDear Fred,
I also would like to welcome you to this site and I am sorry to hear of your son’s diagnosis. I also would like to add that I was diagnosed at age 41 with Intrahepatic Cholangiocarcinoma over 5 years ago. I have had a resection, reoccurrence, about 2 years of chemo and for the past 3 years I have been on the Immunotherapy trial at NIH with great results. Please don’t lose hope! I will keep your son in my prayer and will hope for great scan results. Please keep us posted.
MelindaDear Danielle,
Welcome to this site and I am so sorry to hear about your mother and all of her struggles with infections. I can’t add anything but I do agree with Lainey that sometimes a new set of eyes might offer a different solution. I will keep you and your mother in my prayers and please keep us posted. Sending support your way.
MelindaColleen,
Great news! Thanks for posting the update! I think of you and your mom often and keep her in my prayers. Give her a hug and tell her thank you for giving more HOPE for the future of CC!
Love and hugs,
MelindaJulie,
Happy, happy anniversary!! So glad you celebrated! Tower of Donuts???? I must find me one of these!! So happy for you….Love and hugs, Melinda B.Dear All,
I am very happy to report that I have just returned from my checkup at NIH. I am 16 months post treatment and have great results. The tumors continue to be stable, slight shrinkage in a few and they said one tumor in my lung seems to have completely disappeared!
This trial has been opened up to many solid cancers now, which is wonderful, but it also means that accrual has slowed down, because the demand is high. The wait time is longer from time of acceptance to actual cell infusion, which for many of us is not a good thing since time is always of the essence. They are continuing to learn more and more about immunotherapy and we need to keep our eyes open for some new trials on the horizon in about 6 months. I have such hope in the future of immunotherapy and wish it would only come sooner!!
While I am forever grateful for the amazing results I have been given, it is also bittersweet…. I have met and come to know so many wonderful people who I want so desperately to be able to share in this success. I pray everyday for everyone who fights this disease, for the researchers to find the cure and the strength and peace to overcome the difficulties. I love to hear other stories of success and hope, and I love to share them with others. I only want to inspire others to never lose hope. Three years ago, I would have never imagined being here…..five years ago when I was diagnosed, I had NO idea what I was in for…..things change, opportunities arise and miracles happen every single day!
I consider every single one of you part of my family, and I feel very privileged to be a part of this amazing family!!
Love and hugs,
Melinda BachiniMelinda,
Just wanted to send prayers your way for absolutely great scans for your husband tomorrow! I will be thinking of you two. I would love to see that picture ….it sounds amazing! Take care and God Bless!
Melinda B.
