Introduction and my story
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Hello Scott, hope you continue to maintain a positive attitude, and I would like to wish you and your family a warm, happy holiday season, I hope all goes well, Pat
Scott…..I am amazed at the significant drop in tumor markers and the prospect of further treatment well within your reach. From what I have learned, platin drugs (Cisplatin, Carboplatin, and Oxaliplatin) are tough on the kidneys with Cisplatin – the harshest – leading the way, but I must say, based on postings from others, your reaction was the most severe noted on this site.
Great to see you recovering and fingers are crossed for things to move along more smoothly for you.
Hugs,
MarionWOW! Scott I was raised of 70th and Holmes! I miss Winsteads! I hope everything works out for you and enjoy the Holidays!
thanks Lainy.
Truman Medical is at 25th and Holmes just next to the Children Hospital. They are trying to boost there cancer center.
Hello, Scott! I am so sorry to read about the bumpy road you took. Good idea now to put that behind you (no pun intended) and like you say, 2016 has got to be better! Where is Truman Hospital? I have not been there for YEARS! I was born at Menorah Hospital. Happy to hear that the GEM is working, that is great news. Please continue to keep us in your loops and I hope the rest of December is a good month for you!
just an update to my story.
I had kidney failure after my 3rd round of gem/cis chemotherapy in October. I was on dialysis for 3 weeks but my kidneys are almost recovered. We did a 4th round of GEM only. I have a surgeon in kansas city (Truman Medical Center) who wants to use the nano knife with a resection in DEC or JAN if my tumor has not gone into the lungs. The first hurdle will be a CT or MRI with contrast as that may have a bad effect on my Kidneys. The second will be if the tumor has gone to my lungs. 2 big hurdles in my way but the positives are the Chemo seems to be working as my tumor markers have fallen way down to under 2000 from 20000. I am in very good place right now(mentally /physically) so looking forward to 2016.
Thanks,
Scott
Hello Scott, Thank you for sharing your story, mine has similarities and differences, I was 49 when diagnosed, I have PSC and no colitis. My tumor was smaller, left hepatic duct ( hilar ) the tumor was contained within the bile duct, everyone seems so up on there facts, I didn’t pay attention to details like tumor size, to be truthful. That was almost ten years ago, I didn’t have a discussion board, or even anyone who had this cancer to talk to, so other than my doctors ( my primary care physician’s mother died of cc so he was familiar with it ) My doctors recommended no chemo, so I have had no treatment other than surgery, Lots of scans and blood draws over the years, all clear, and other than bilary restriction issues from PSC and resected bile duct site, I have had no issues, no stenting, and my case is easy street compared to most, but listen to your doctors, your fate is truly in their hands and they want you to beat this. Waiting is hard, I waited 5 months from tumor discovery to surgery. 47 is too young , just as 49 was, my children were on their own ( I had my kids early ) so they would have gotten by without me , so I didn’t have that to stress me while dealing with it. It is easy to say and hard to do, but find a relaxing place to go that is interesting and distracting like a museum or zoo. Good luck, Pat Also Scott, I am hurt and saddened that your wife and family have been so robbed by that heartless greedy man. I saw that story on “American Greed ” and I was appalled, not even knowing how many people he hurt. I am so sorry are the only words I have, and let’s be thankful he was caught, my heart breaks for you and your children, try to be strong for them, Pat
Hi Scott, It is a pleasure to meet you despite the circumstances that led you to find us. I discovered this discussion board in the spring of 2014 when my husband was diagnosed, and the information and support has been invaluable. Not only is this the best place to find the most current information about treatment and research, it is also a great source of emotional support. The people on this board are so kind and caring, and they really “get it” when CC patients share their feelings and concerns.
Your CC “story” sounds similar to my husband’s in terms of presentation, including ERCP and month long hospital stay. Except my husband had disease in his right biliary system and a large mass in his liver. Initially, he was not a candidate for resection and he started chemo (GEM/CIS). We sought second opinions from two medical centers that are all very experienced with CC. They concurred that he was unresectable but encourage him to take the chemo in an attempt to become resectable. We didn’t think that was at all likely, based on all that we had read, but, we started treatment. We kept searching, though, and our third second opinion (UCSF) presented his case to their multidisciplinary team, and shockingly, their highly skilled surgeon advised that he could do a resection with intent to cure. Mike had the extended resection 1/12/15 and, after a long, gradual recovery, he is doing very well. He returned to work in May, and prognosis is good.
We have learned how important it is for patients with this disease to work with medical centers that are very experienced with CC, as they are having better success for their patients than the generalists. Many patients are having results that exceed expectations. I know that dealing with CC is unbelievably difficult, but I think being positive and taking one day at a time, makes it more manageable. Sending lots of positive thoughts your way,
Debbie
Dear Scott know that all you are going through emotionally is sadly normal. BTW it is pretty common to ask the ONC for something to take the edge off. What a terrible story about the loss of your first wife. I am so sorry. In time we learn that life is for the living and we carry on. I am going on 6 years soon from the relocation of my husband due to CC. Yes, do read up on some of our posts you will see what a remarkable family we are and get some information at the same time!
Thanks for the warm welcome and support. I have been reading the discussion board topics and it has given me great hope to know that there are lots of survivors. I struggle most with my emotional roller coaster right now but am working on getting that taken care of as part of my treatment. I have difficulties because my first wife lost her battle to Non Hodgkin’s lymphoma over 17 years ago and now I face the same battle. She had a great oncologist but was unfortunate to have the pharmacist at research medical center in KC that was diluting the cancer drugs. I know Hope, attitude and a large amount of faith will get me through this along with everyone at this wonderful sight.
Thanks again,
Scott
Scott,
Welcome! We are now all behind you in wishing you the best in this fight. My mother was unresectable but still doing great after almost 2 years. She had Gem/Cis and then two SIRT treatments. At her last scan, there was still no evidence of disease. Your doing the right thing with the second opinion at a center that is familiar with CC and should be taking a multi-disciplinary look.Take care,
CatherineScott, Welcome and thanks for sharing your story. I see that you’re an electrical engineer. My husband is/was also an electrical engineer (retired last year) and thanks to his excellent benefits even as a retiree, insurance has been excellent as far as paying for things as well for my surgery and treatment. You and I are both very fortunate not to have to struggle with the bills, in addition to the cancer. It sounds like you have been battling cholitis for a very long time….and now this too. Yes, there is a connection between the two….which sure seems like a slap in the face, doesn’t it? One is bad enough. I’m so glad to hear that you are planning the 2nd opinion with MD Anderson. I always maintain that the more eyes and ears and brain cells looking at the details/facts of your case, the better. As Lainy said, Knowledge is very important to fight this “thing”. We’ll be here if you need us.
Julie T.
Hello and welcome, Scott, to the best place to be for CC support. We have a remarkable family here but sorry you had to join us. We have a lot in common as I was born and raised in KCMO. Went to Southwest H.S. in Brookside and my favorite all time burger was Winsteads! Oh, and I had UC but hubby was the one who got the CC.
Your kids are going to help you through this with their sense of humor! When my husband was DX he also was extremely yellow and I said, “You know I don’t like you in yellow”.
You have done the right thing by getting a 2nd opinion. We are big believers in 2nd and 3rd opinions. You have already discovered that a great attitude and humor are the most important things in getting good results! Attitude is everything. Knowledge is also very important as right now it is our best tool for fighting this “thing”.
Below is a site you may find helpful and please do keep us updated on your progress.http://cholangiocarcinoma.org/newly-dx/
Hello everyone, My name is Scott and I was diagnosed with cholangiocarcinoma in June 2015. My journey started with a trip to the hospital with a severe case of Jaundice. My Bilirubin was 38 and I was a great shade of Minion Yellow(as my kids like to say). I had an ERCP performed on me and a plastic stint placed. I was initially just diagnosed with Primary sclerosing cholangitis but my cat scan had a strange mass that required an MRI and biopsy to determine that it was a 6X7cm mass on my right bile duct. I was transferred to another hospital that was better equipped to deal with my findings. It was determined that my margins were not good enough for a resection and my only option was chemo. I was released from the hospital after almost a month and sent home to wait for my bilirubin to go down which never did. I had to have another hospital visit to remove the stint that was clogged and clear out my bile duct. My Oncologist insisted we wait until my bilirubin was below 9 before going ahead with treatment. It never went below 15 so we started to look for a second opinion. I live in the Kansas city area so we sought out Nebraska medical who placed an external and internal drain which has been great. We also started chemo with Cisplatin/Gembcitabine which seemed to go well until I came down with an infection and another stay at the hospital and a replacement external drain. I also had an appt scheduled with MD Anderson which we had to reschedule to the middle of Sept. I am now in a waiting stage for my next appt and trip to Houston. My spirits were very low but are improving every day.
A little about me… I am a 47 year old father of 4 school age children. I am a Sr Electrical Engr at a large manufacturing corp so my insurance and disability has been good so far. I have lived with Ulcerative Colitis for 20+ years which seems to be the link for the PSC.
I am hopeful to find a good treatment plan and be a survivor so I can raise my kids and live a good life. I have great support for my family and me and a great network of people who have beaten their cancer to help me on this journey.
Thanks for listening to me and I appreciate everything that I have already gained from the foundation.
Scott
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