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Hi Jen and welcome to our Family. If you could re-post this under Introductions I know you will get more answers, it may get lost attached to this long thread that is already running.
What has been done so far in the way of testing. If this was DX Jan 2nd, what happened to start the testing procedures. We need to know a tad more. Do you mind telling us where you are located? I know when mu husband Teddy was DX he had jaundiced and everything took only 5 days to DX and we were on our way. Personally I would be looking for a doctor who is more aggressive
and understand the speed for CC. Do you have an Oncologist or just the Gastro guy? Bottom line is from Jan 2nd to Mid February is not acceptable.Jen,
Sorry you have to be out on this site.It took Yale 6 weeks to give my mother her diagnosis so I understand your frustration. Just please make sure they do not do a needle biopsy on the tumor and that you are in a hospital with a staff that has experience with this cancer. Because of inexperience, second and third opinions are normal. My mother’s cancer was officially diagnosed on her second opinion with Mayo ( all testing took only 3 days!)based on only the following: Ca 19-9 tumor marker over 100, FISH staining, visible tumor found on an MRI, and history of PSC disease. A needle biopsy of the actual tumor was not done as it may seed the cancer. I sound like a broken record as I keep repeating this biopsy stuff again and again but I know the first question I had for the doc was ” did you biopsy it?? ” thinking it could possibly be non-malignant. Best of luck.
ajackson0@snet.net
ashley from CTMy father has a tumor and has been told it is more than likely Cholangiocarcinoma although it is taking weeks to get a proper diagnosis. Can someone tell me their experience in getting a proper diagnosis and getting in for tests? We saw a gastroenterologist yesterday to get schedule for an endoscopic ultrasound and FNA but it is 3 weeks out. This sounds ridiculous since the tumor was first found on Jan 2nd.
Good Hearing from You! Thanks for checking in! Sounds like chemo is the right move for you. Sorry to hear about the kidneys. Gosh, you have had such a rough road back to recovery.
Just an update
I started Chemo last Thursday, cancer marker was at 1280 (should be under 36) so Chemo is the best path now
Was admitted to the hospital on Saturday as my Kidneys were trying to shutdown due to Motrin, so we needed to switch up my pain medicines
FYI
Jim
Just_Jill wrote:Jim! What a summer you have had! I am so glad to hear from you. Do your Dr’s believe they were able to remove all the cancer?Yes, they think they found all the cancer, they found 8 lympnodes that were cancer and removed those along with they found a 2nd bile duct in me and removed it
I walked without the cane last night, 3 laps around my home.
Jim
Hi Jim,
Hoping that you have a good recovery and I am sending you loads of positive thoughts!
Best wishes
Gavin
Wow, Jim, very close to the path Teddy strolled. He will be 77 Oct 27th and this is his 4th year of being a survivor. I am sure the doctors told you that a Whipple is the biggest surgery to the human body, not life threatening, normally but huge. Teddy also had a couple of fistulas. Such a pain in the you know what! About 2 months after surgery they found a small hole developed at the resection and he went in to ReHab for 3 weeks with nothing but an IV. Thankfully the hole closed up. It takes a long time to heal but thank goodness you are now on the way up. You will become a STAR as everywhere we go if there is a doctor around he is in awe of Teddy. What a way to get attention, Yes? Stay strong and positive and please keep us posted.
Jim…..your checking in with us was highly anticipated. I am wishing every day to be another step towards recovery for you and I am sending all my best wishes in your direction.
MarionJim! What a summer you have had! I am so glad to hear from you. Do your Dr’s believe they were able to remove all the cancer?
This is Jim reporting in (sorry for the delay)
Had my whipple surgery on May 29. I had some major complications and went back into surgery on May 30 and again on June 1.
I was in ICU for 29 days and they almost lost me three times.
I spent the month of July and August in the hospital recovering and I have been home since September 9th
I lost about 80 pounds and I am on a wound vacume. I do physical therapy 3 times a wek and I am on a liquid diet until my wound and fistula is gone.
I am working from home from my laptop and walking (sort of) with a cane and should be walking within 2 weeks or so
Keep your prayers coming!
Jim
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