lainy
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To My Sister from another Mother. WOWSER!!! I am doing cartwheels, clean scans all the way. You are one courageous, smart and fabulous woman. I have a feeling that MDS does not know what it is up against with a fighter like you. Don’t freeze in Iowa and we will try to stay warm in SLC .
Dear Catherine, I am sorry about your Dad and hope he is not in pain. As for your Mom, WOW, I am so glad she is not normal!!!! Bittersweet news with your parents but Dad has one of the best care givers he can have and soi dies your Mom with you for a daughter! Much love and prayers for your family.
Dear Positivity, Some of that we know is from a parasite called liver flukes found in a fish (can’t remember the name) but if you Google liver flukes it will give the name of the fish. My husband got CC at 73 and I just know it was that parasite from when he served in Korea. It adheres to the bile ducts for 30 – 45 years and when it leaves it leaves behind CC. It cannot be detected during those years until after it leaves and it is truly a monster far beyond the size of the parasite! The big problem is that this fish is Located in Asia and who knows if it has reached our shores. We do have a lot of patients on the Coasts here. I have also read several times that our Inspection of Fish that come through our Coasts are not always inspected properly. Here is an interesting article from the NIHL https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3088844/
Dear MCE, I am so very sorry to read about your husband, Richard. He has been through a lot and I wish and hope for him to have a more comfortable time now as the Hospice main goal is to keep a patient comfortable. I remember when my Teddy reached this point he called it our honeymoon and we made every day count like there was no tomorrow. You never know how strong you are until “strong” is the only choice you have! I will be thinking of you both and hope for the best!
YEA, dear Brigitte! Good, good news, so happy to read this. I feel that if one lesion grew so little the other didn’t that is super! How is your daughter doing? Keep the good news coming!
Dear Kim, Welcome to our remarkable family and the best place to be for CC support. Truly sorry to read about the diagnosis of your Son and that you had to join our elite group. We know when one hears the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that may help you get through the first leg of the CC journey.
Knowledge is the most important tool at this point to begin the fight. When you have a chance, read some of our Members posts or if you have a question you can use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.
Make sure that the Oncologist you choose along with the Hospital for treatment, are very experienced with Cholangiocarcinoma.
Do not be shy about getting 2, even 3 or 4 opinions. This is a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.
May I ask where you are from and where your Son is being treated? Please do keep us updated on your Son’s progress as we truly care.
Dear Bev, I am so sorry for what Ben is going through but I am elated that he is under Dr. Valle’s Team. When you go next week you might ask the Doctor for a mild anti depressant to help perk Ben up a bit. Make sure you tell him everything that is happening including the low points. I hope you get some good news and direction at your appointment. We will be waiting to read how everything went! Best wishes.
Hi Pat. Beautiful Granddaughters and Boomer and Hercules look fabulous too. Glad you explained the Hercules. All these years I thought you were a weight lifter! LOL
Dearest Pat, BRAVO, BRAVO! I know you worked hard and did everything right and now you are an honest to goodness MIRACLE! Yes, life is for the living even going to a Dentist! I am so excited to meet you next week.
LIVE every moment! LOVE beyond words! LAUGH very day!Maria, I can’t get back to sleep so I searched Alaska on our Search site and unfortunately with 2 pages of posts no one mentioned being treated in Alaska. It seems they came to places over here like MDAnderson in Houston, St. Louis Jewish Hospital, Mayo in Rochester MN and Dr. Philip Gold in Seattle WA. at the Swedish Hospital. Another suggestion would be if you could send all LAB and Scan reports somewhere here to get a consult by phone. Again the main thing is to get that pain under control. So glad you are going to find a pain DOC. Please keep us posted,
Maria, I have a strange idea that may help, at least I hope so. Go to our Search engine at the top of the page and type in Alaska and see if any posts pop up about your area and where you might take your Mom be it a Doctor or a hospital that deals with CC. .
Dear Maria, I am so very sorry to read about your Mom’s pain. The best I can suggest to you is to see a different Oncologist. It is his place to make your Mom as pain free as he can. It sounds like he could care less. Sorry, but news like this just gets my goat. With all the different pain MEDs out there he should be trying others. My husband could not take Fentanyl, it did not work for him. He was on Morphine for a few years and it always did the job. In the beginning he even golfed and worked. Of course as he got more sick the dosages were increased but always worked. There is absolutely no reason a patient has to suffer in the way she is. Please see what you can do by getting a new Doctor. Wishing you and your Mom the very best and please let us know how she progresses.
Dear Brian, this looks like a very good report to me as all counts are on a downward move. YEA! What ever works we will take and you are both definitely doing the right stuff to kick CC to the curb! I would say the Brian and Barb team are a dynamo duo and keep on with the good work. Also many thanks for the informative post that could be of great help to others.
Oh, Anne, GREAT post! You never know what lies around the corner and I am so happy that your husband’s pain is gone. I am hoping they also find a reduction in the CC. Spring is 2 months away, a time for new beginnings and I am wishing for your husband to have new beginnings we well. Keep on keeping on!
