Newly Diagnosed, new member ????
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Cathy-
Thanks for your advise. She is having gem/cis at University of Iowa and in a couple months they will revisit her MRI and she may be placed on the transplant list. We are keeping our fingers crossed for that…Dear Karen, welcome to our extraordinary family and it looks like you are one of our CC Super Heros. You have already been there—-done that! May I ask what Surgeon you used and where is he located? How are you doing now? Are you able to carry on close to your normal routine? You have come to the best place to be for a CC Patient. Please let us know how you are progressing..we really care and love the updates.
Hi, my name is Karen and this is my first posting to this site. I was diagnosed at age 47 with CC in September 2011 and all things moved so quickly. I had a 4.5 cm tumor in my left bile duct. I under went liver resection, left lobe removed, Roux and Y, and various other things. 6 weeks after surgery I start low dose chemo and radiation treatment for 28 days. My margins were not clear and had a positive lymph node. Currently I am going through chemo with Cis/gem. My number one recommendation is to have a good surgeon who knows the liver inside and out. When I was deciding on where to go, I was was told the surgeon was my best chance of survival. It is all so overwhelming , so take one day at a time. Good luck with everything.
RoseGrace-Welcome and sorry you had to find us. I am a CC survivor due to a liver transplant. I have the most amazing story to share, please read it at http://www.catherinedunnagan.com under ther telegraph link. I am alive because of God, 2 strangers and Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO . Dr. Chapman is the most genuine caring doctor and very successful in his work, he help develop the Mayo’s trial. There are 3 of us that HAD CC that doctor has transplanted, and Barnes is only 31/2 hours away for you. Barnes is also list as a Cholangiocarcinoma center! There was one other gentleman who lived in Iowa/South Dakato area and contacted Dr. Chapman for his mom for a second opinion after contacting Mayo and was able to see him and schedule her surgery (resection) and treatment plan before his appointment date at Mayo. Dr. Chapman is a real hero!!
Your mother-in-law’s case sounds a lot like mine
Please call if you would like to talk (618-567-3247) or if if you would like Dr. Chapman’s number, he is very phone friendly!! There is HOPE!!
Lots of prayers-CathyI had a plastic stent. They said they would replace it with a metal stent if I was not a candidate for surgery. I had the metal stent put in. That was done in November. They told me that the plastic stents don’t last and have to be replaced. I have had no problems with the metal stent. As for the chemo I am not a candidate for that so cant speak to that. Hope that is helpful.
My MIL will be treated at University of Iowa due to issues with her insurance company in regards to Mayo.
We have lived in KC for almost 10 years having moved here from Iowa. We live north of the river close to the airport. I have never been to Winsteads, I guess I will have to try it out now
Hi, RoseGrace, I can’t help with the chemo as Teddy never had it. But I had Zofran for other things. Had no side effects but also didn’t think it helped. I tell you we are all so different. BTW, I was born and raised in KCMO. Have you been there long? My parents lived across the street from the Ward Pkwy shopping center. I went to Southwest H.S. but that was long ago. The only thng I miss is Winsteads! Where is your MIL being treated? Best of luck and all my best wishes.
Thanks for your responses! I will pass them along. She started having symptoms in early January of itchy and a little chest discomfort. Besides the 2 stents, she hasn’t had any treatment. Its just amazes me how long it takes to get the ball rolling.
Hi Rosegrace,
My daughter, Lauren, was on Gem/Cis at one time. They gave her nausea meds in her IV before she got chemo. It was called Aloxi. They also can give Zofran, but it gave Lauren bad headaches. She also got a lot of fluids through her IV, so I don’t believe there was a chance for dehydration. I don’t know if I would call any chemo “mild.” Everyone reacts differently to every chemo. In Lauren’s case, she would feel like she had been run over by a truck for a few days and sleep a lot after chemo. This particular chemo did not make her real nauseous, but once in a while it would sneak up on her and she would throw up. Ask for a prescription to take at home for nausea. Lauren has Compazine and Ativan. Ativan can also be used for anxiety. Lauren takes one every night before bed. Cisplatin can really mess with the blood counts, especially platelets. Lauren had to miss a few chemo treatments due to low platelets. This is quite common. As for questions you should ask the onc., the main one is to find out and make sure he or she has treated many people with CC. This is a rare cancer and some doctors don’t have much experience with it. Write a list of questions you have before the appointment and make sure you are satisfied with the answers. I always go in with a list. I found reading as much as I can and learning the lingo really helps. It seemed so foreign to me at first, but now it is second nature. I wish you and your mother-in-law much luck and I am sending love and hugs your way. I really hope things go well. A positive attitude helps immensely. Take care.
-Pam
rose…the upcoming visit with the oncologist will address many of your concerns. You might want to share with your mother in-law that the majority of our members are undergoing chemotherapy treatments or have experience with it in another way. I have read that million people per year undergo chemotherapy treatments of some sort. (Not sure of the accuracy of the source.)
And, as long as your dear Mother in-law is assured that she can discontinue her treatments at any time, she just might be a bit less worried.
I am hoping for many others to chime in and share their thoughts with you. They are fantastic group of people and always lend a helping hand (posting) to those seeking advice.Hugs,
MarionAfter the second ERCP they placed a metal stent at Mayo for a distal common bile duct tumor. Cytology reports mets to lymph node and porta hepatis. My mother in law is not a candidate for liver transplant or whipple. Mayo Onc recommended the gem/cis regime of chemo. The onc said it was a mild chemo. We are wondering what mild means. The family would really appreciate any advice of what to expect or what questions to ask. From reading it sounds like she needs a RX for nausea and something lined up in advance for dehyration.
What can we expect? What can we do for her? What questions should we be asking the onc. She hasn’t started yet. Her insurance will not cover Mayo so she is going to a different hospital for the chemo.
Thanks for all your help. The info on this site is so helpful. I don’t know where people would be without it.
Thanks so much for your support. i will give the info about the surgeon on my next posting. I had one-third of my liver removed (I also had part of my colon removed at the same time but it was a different type of cancer). There was a “panel meeting” of specialists at Morton Plant Hospital in Clearwater,
Fl who reviewed all records. It is only necessary that I see a family physician locally once a month. I also have lab work monthly. No treatment is needed. Right now, I am doing pretty well and appreciate every day that I have – especially family and friends. Also, I am so glad for this site.Kilgore….a warm welcome from me also. Congratulations on the surgery. Other than tiredness, do you have any other symptoms?
Hugs,
MarionDear Kilgore South, welcome to our remarkable family and congratulations on being a Super Hero along with being a survivor. I am also curious as to what follow up treatment is and what kind of CC and surgery did you have? I am sure the best RX was moving near your son! Please keep us updated on yur progess and even though you have had your surgery, this is the best place to be!
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