hamptonsarasota
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I was shocked to read on FB what transpired. My most sincere condolences and prayers at this most unfortunate time. God bless you and your family Pam…
Age: 41
Gender: Male
Age when diagnosed:40
Diagnosis and Stage: Intrahepatic IIA
Jaundice: yes
Initial CA19.9: never tested until after resection
Lymph nodes involved? no
History of cancer? no
Resectable? yes
Had surgery (with details if applicable)? 9/14/11
Liver transplant? no
Hospital: Memorial Sloan Kettering
Oncologist: Dr. Richard Buck (Sarasota, FL)
Second opinion: No
In remission (currently or was)? currently, ‘cured’ CA19-9 is 23.9
Survived since diagnosis (years/months/weeks): 1 year, 6 months, 1 week
Chemo 1: Gemzar/Cisplatin
Length (and/or number of treatments) of chemo 1: 3 months, 5 cycles adjuvant
CA19.9 trend during Chemo 1: stable whole time below 30
Side effects Chemo 1: none
Chemo 2: none
Length (and/or number of treatments) of chemo 2: n/a
CA19.9 trend during Chemo 2: n/a
Side effects Chemo 2: n/a
Chemo 3: n/a
Length (and/or number of treatments) of chemo 3:n/a
CA19.9 trend during Chemo 3:n/a
Side effects Chemo 3:n/a
Advice for chemo: IV steroids worked and anti nausea!
Cyber knife? no
Radiation? yes
CA19.9 trend during radiation: stable below 30
Chemoembolization? no
Radioembolization? no
Experimental treatments/Clinical Trials? none
Any other conventional treatments? no
Blood transfusion? no
Alternative treatment? no
Use of supplements? no
Special diet? no
Complications during treatments? leaking bile after resection from reattachment of small intestine to form new bile duct took 3 months to stop leaking
What worked for nausea (best)? Zofran (during radiation only)
Biggest regret:none really
Best advice given to me:from the surgeons: don’t look up anything on the internet before surgery, and I didn’t. Not even after for several months. Then I found this board and it was game on!
Best tip/idea/recommendation:totally depends on your situation. Use the internet if you are being told something you don’t think is right and ask a lot of questions. My situation was unique in that we had surgery scheduled right after my first meeting at Sloan Kettering so I didn’t have the time to do any research. We didn’t even know it was CC until 5 days after the surgery.
What would you have done differently?nothing
Current status: CT every 6 months, that’s it!
Comments:lucky to be here, lucky to have had symptoms because of location of tumor causing bile to back up into the liver.Wow, this post became the cooking channel all of a sudden!!! We’re doing a seder 2nd night, going to friends the first night. Yes, Bat Mitzvah on October 16th I believe. We’ve got the hotel blocked, DJ lined up, Michael’s on East booked for the venue and food, and the wife is making the center pieces already!
And the official findings:
CHEST: There is no axillary, mediastinal or hilar adenopathy. There are no suspicious pulmonary nodules. There is no pneumothorax or pleural effusion. The pulmonary arteries are well opacified without filling defect.
ABDOMEN AND PELVIS: The patient remains status post partial hepatectomy. The liver has a stable appearance. The patient is status post cholecystectomy. The spleen, bilateral adrenal glands and both kidneys have a normal appearance. The pancreas appears normal. There is no adenopathy. Delayed images demonstrate no filling defect within the bilateral renal collecting systems, ureters, or urinary bladder.
IMPRESSION: Stable examination., Findings are NOT suspicious for tumor recurrence or metastatic disease.
It’s official… Gotta love it!!!
First time in a while I’ve checked the boards, and this is the best news one can expect to see!! Congratulations! I have a 1.5 year scan in 2 months, hoping I have same news as yours!!!
Will you get treatment this Tuesday? I’m flying in to town tonite… Let me know and I can stop by to say hello!!
1 year scan confirmed I’m still cancer free!! Surgery was 9/14/11 and everything is going great So far…
Hey Adam, I’m 41, had the surgery in September last year (Wednesday will be 1 year to the day…). My scar is about 14″ in the shape of a J and believe it or not is still numb. I had a slight abscess at one part of the scar that had to be packed and heal from the inside/out so it’s a bit indented (a bit, funny, depends on your definition of ‘a bit’) and sometimes bothers me. I find that it bothers me more when I have been eating too much and put on a bit of weight (and yes, I’ve been having that problem lately, eating too much…
). Regarding the ab muscles, mine ‘work’ but I haven’t been doing the typical weight training for abs lately. I have been doing light crunches when I am at the gym, but this past week I did a set of abs in between every set when I was doing bench/biceps (total of 8 sets of crunches at 20 each) and then leg raises for lower abs (3-4 sets of 10). That morning about 3-4am I woke up with enough discomfort that it woke me up. I got back to sleep and the next day the pain wasn’t really there but was a bit sore. Probably over did it, but I think I need to get a bit back into it more slowly to build up the muscles. I don’t have consistent pain or uncomfortable pain, but overdoing it will cause the pain and the numbness is still there after a year. Definitely listen to what the others said on your earlier post regarding seeing either your ONC or a different GP regarding the pain. You want to ‘manage’ it so it’s tolerable while it heals so you aren’t in discomfort. Good luck!!Lisa Ann, it’s heartbreaking to read what you have written but know that everyone on this site understands what you are going through. Know that our thoughts are with you, and we are giving your family support through our prayers as well as yours. Follow Anp’s advise, tell your father you love him, he WILL hear you and comfort him at this most difficult time. All our prayers heading your way…..
Adam,
I just had my 1 year scan, everything clean! I only had a 1cm tumor on the bile duct, clean margins everywhere, so I was one of the lucky ones and feel blessed to be so. I also did adjuvant Gem/Cis for 3 months, and radiation for 5 weeks as well. No good data on whether or not it will help, but being 41 I said what the heck, didn’t want any regrets 5 years down the road. You’re in the same boat being a few years younger. Wish you the best, this site is a great wealth of information and support so keep visiting!!Tiffany, it was my pleasure… You’re going through so much at such a young age and all we can hope for is that you get the opportunity to fight this thing and beat it. Whether it’s a transplant, resection, whatever, you deserve that chance as do all of us who are dealing with this disease. I’m definitely one of the lucky ones who caught this thing early, that’s for sure. Thanks everyone for the well wishes!!! Hoping everyone gets as good a report as I did!
I was just having some fun with everyone… Perfect reults, nothing growing anywhere… Next Wed is 1 year to the day of my surgery also.
Tiffany,
Absolutely fantastic news!!! So glad we could meet up on Monday. I hope the next few days go great for you and they get you on that list!!! I will be in Huntsville the Tuesday after labor day thru Thursday, maybe dinner Wednesday night??? Look forward to seeing you and Brian again! Nothing but positive vibes coming your way!!!
