lainy
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Dear Barry, MAZEL, MAZEL on your successful surgery, it is the goal all CC patients strive for. And for my non Jewish family here Mazel means the ultimate congratulations in Hebrew. I love your name as my brother is Barry as well. With all that aside WELCOME to our remarkable family and we are over the moon about your post. Yes, you were in great hands as we know Presbyterian in NYC. You are a prime example of why it is so important to get other opinions. Thank you so very much for posting of your success as many on this Board need to read about hope and miracles and that they do come true. Please keep us updated on how you are getting along as this is so very exciting.
Dear Bonnie, I am so very sorry to read about your husband and am wondering if you have sought out a 2nd opinion. If all that can be done has been done I highly recommend you get in touch with Home Hospice. They will see you both through to the end of the journey. I do have a list of 10 signs the end is near and if you email me through the site (just click on my name to the left of this post and it will take you right to the email) I will send you the list. My Teddy followed it pretty closely except for #10. They ordered a hospital bed that I put in the living room as it was open and airy and the big TV was there. Also there was more room for the nurses to work around the bed. The bed is comfortable and the side rails are good for pulling themselves up and out. We also ordered a walker so he would not fall. Is he on any meds that could be causing the falling and confusion? Or he could have an infection. You will get through this as you never know how strong you are until “strong” is the only choice you have! You are not alone we are all here with you.
Dear Teresa, welcome to our remarkable family and thank you for Steve’s story. It sounds like you both have done everything just right and it is with a wish and hope that eventually Steve can have what all the patients want here and that is surgery. Funny thing to want so bad, right? It is great that you are able to treat this CC as a chronic condition as that is the best way to conquer it. So glad you have come forward and joined us and I feel your post will be helpful to others. Please keep us updated on Steve and am wishing you both the very best.
Dear Reacher, thank you for posting Michael’s inspiring story. I am sure there will be many chapters of good news to come. Love the name of your Giap Zap book!! Life is to be lived and that is just what you are doing, good for you! Also your story give so much hope for others on our site and we thank you for that. Let’s hear it for Miracle Mike on his Bike! (Hmm maybe another book?)
Hi, JD! Good news about your DH and hope for his ‘no side effects’ to continue. Good road you are on and here is wishing for the road to be smooth with no bumps! Good going!
Billy, it sounds like you are the best RX for Kathy. I think we assumed you would be flying. I hope you both had a great time. I totally agree with you about living it up now as life is for the living. You will never look back and regret your little escapes or escapades! Please keep us in your loop as to what transpires after the next scan. Sending you both the very best!
Dear Annabel, I am sorry to read of the latest report on your Father. Can you get another opinion where you live? How old is your Father? Alternative medicine has yet to be a cure for CC but if you feel you want to try please let the Doctor know what you are doing as it may interfere with whatever they decide to do. Also let us know how he is doing and if you can seek another opinion. You never know how strong you are until “strong” is the only choice you have!
Dear Joe, so sorry to read about your Mother but you have come to the right place for CC support. May I ask where your Mother is being treated? I am not surprised that they want to start with Chemo to bring down the tumors and to stop the spread. We have had patients on here with like diagnosis and they have been started on chemo first as well and had good luck. You never know how strong you are until “strong” is the only choice you have! Once a treatment is started, I promise that the fright turns to fight. Read up as much as you can on CC as knowledge is our best tool for fighting this cancer. Be strong for your Mother and hang in and hang on. Prayers going out to you and your Mother and please keep us posted on her progress. Below is a site you may find helpful: http://cholangiocarcinoma.org/newly-dx/
Dear Tiah, so sorry to read about the platelets but the fact that the pain has been helped is really GOOD news. I will keep everything I have (even my eyes) crossed that Mum gets to make the trip to Sydney to see the surgeon. That is what you have strived for all this time and looks like it is more of a possibility now! Good news!
Darla, I have been thinking, where has the time gone? Dec, 6th will be 6 years! I feel like it went so fast and yet it seems like a century ago. I have posted this article to my FB as everyone I know eats Sushi (NOT me) and I read an article about 6 months ago how fish coming in to the USA is not really inspected like it should be. I have gotten to a point will I will only eat Farm grown fish. Fortunately I don’t eat much fish anyway. Once a month Mel and I go with 4 other couples to a Sushi place and I order Tempura or Teriyaki chicken. Hope you are doing good.
My Thanks to all that have served their Country, VETS, Firefighters, Police and yes what an appropriate time for this article to appear. Teddy served in Korea and I am sure that is where he got his CC souvenir. This article has been long overdue so many thanks to all who were involved. Darla, Jim was a really handsome man!
Dear Shanna, welcome to our remarkable family and to the best place to be for CC support. May I ask where Mom is being treated? Not sure about how to find out about trials but would think the Oncologist would know. I also know someone will come along here and advise you how to do this. I just wanted to welcome you and below is a site you may find helpful. Please keep us updated on Mom’s progress as we truly care.
http://cholangiocarcinoma.org/newly-dx/
Hi Billy, and welcome to you! As you have found out, Cholangiocarcinoma is NOT a household word. I have 2 thoughts on traveling. #1 Get the OK from Kathy’s ONC and #2 See if the ONC can also recommend someone in/near the place you want to go to. If he/she does not know of one then I would Google the destination for ONCs and hopefully find one who has treated CC. The key I guess is how you ended your post with, “depends how Kathy is feeling”. Best of luck and it is great to have you come on to our Board.
Dear Rishelle, welcome to our remarkable family and the best place to be for CC support. We all understand the nightmare and the roller coaster ride. CC is NOT a household word! Know that by bringing him to MDA and to you, you have done the best ever you could for Dad. I don’t know how long he has had stents but they do get infected and need to be changed every 2 – 3 months. My husband used to get them changed about every 6 weeks. The infection is a blood infection and once the ONX would give Teddy an IV of Levaquin it cleared up very quickly. He would get a high fever and the chills so bad that I had to take him in to ER each time. Please let Dr. Javle know about Dad not wanting to eat and how much it seems to disturb him. Because this CC is still so rare the DOCS must be advised when anything seems amiss. Also, below is a site you may find helpful. Please keep us in your loop on how Dad is doing as we truly care.
http://cholangiocarcinoma.org/newly-dx/
Dear Jay, welcome to our remarkable family and the best place to be for CC support. Sorry to read about your FIL but he is truly at the best place with the best of the best! Please know that GEM/CIS is the norm for the first treatment and I have read where they are adding Abraxane. We have a search engine at the top of the page and if you type in Abraxane posts will appear on that subject. Below is a site you may find helpful and please keep us informed of FIL progress. Sending you all the very best.
http://cholangiocarcinoma.org/newly-dx/
