Fantastic news!! Here's to the next 6 months and more!
Age when diagnosed:40
Diagnosis and Stage: Intrahepatic IIA
Initial CA19.9: never tested until after resection
Lymph nodes involved? no
History of cancer? no
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
CA19.9 trend during radiation: stable below 30
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!!!
Well, it's been a bit since I've posted, and I apologize for that... Since the Tough Mudder www.toughmudder.com on 12/4 and vacations at the end of the year along with a career change on 1/4/13 (I'm now officially a Realtor, activated my license and sell homes for the builder I used to work for here in Sarasota, www.johncannonhomes.com) it has been a bit busy! I had my 1.5 year scan on Tuesday this week. My wife just gave me a call and said that my scan and all bloodwork were normal. It's kind of funny because I seriously did not even have the scan on my mind nor was I experiencing any 'scanxiety' at all either. bottom line... CLEAN SCAN BABY! I'm wishing everyone else on the board luck, prayers, and support as you fight the good fight with CC. It was a shock to me when I was told post surgery what it was (didn't even officially know until 5 days after surgery) and the recovery/post surgery infections/2nd and 3rd drain insertions/8 weeks of antibiotics with tube sticking out of my chest/3 months chemo/5 weeks of radiation appear to have worked!!! So far, so good. I'll be popping in periodically too. Anyone wants to send a direct note, email@example.com and I'll get right back to you!
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!!!
I'll work on it later, headed to the airport!!
Let's try these, went to each pic individually and tried to link to that. The album is categorized as PUBLIC but if this doesn't work, may have to try youtube or something...
See if you can access these, posted on Facebook, made them public so it should work...
Finished!!! 3 hours and 3 minutes, 24 obstacles, 11.5 miles and the arctic enema was COLD!!!!!
Leaving the house now... and for clarity, it is not me in the video... this was just a post someone put up to let others see the obstacles... will report back later today when I finish!!
Hey everyone... Been a while, T-minus 22.5 hours for the TOUGH MUDDER!!
Good video that shows each obstacle, of which I should be doing about 75% of, some are different at each event. Hope everyone had a great Thanksgiving and that you will all have a Merry Christmas (or, in my case, Happy Hanukkah)!!!
Will you get treatment this Tuesday? I'm flying in to town tonite... Let me know and I can stop by to say hello!!
Topic: Chemo/Radiation effect on significant others (3 replies, posted in General Discussion)
Hi all, everything going great with me so far after my clean scan in Sept. However, my wife on the other hand is dealing with a serious rash. It started back in January as very slight in certain areas on her back/hips (right when chemo started roughly). We specifically asked about transfer of bodily fluids and the nurses said to wait a minimum of 48 hours before you... well, umm.... you get the picture... (PG site right? Tryin' to be kid friendly without the specifics if you know what I mean...
My question is, has anyone else had this happen to their significant other??? The rash was massive and over her whole back at one point and she was on 100mg of Atarax 4x/day as well as 60mg of prednisone... Now she is only using topical to treat the itch (which is the worst part, the itching!!) and be off all ingested medication since we have an appointment with Mayo in Jax on the 1st of November...
Feedback would be fantastic, thanks in advance!!
Re: Survival...Please tell us your latest milestone (56 replies, posted in Good News / What's Working)
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!!
Wishing you the best, hope they 'proceed' this time!!!
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.....
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.
Well, I'm in Huntsville, had my 1 year scan (first one since April) Tuesday am before I flew out here. Saw Tiffany yesterday, and the wife called this morning and told me the nurse called with the scan results......
Well Tiff, since I just saw you here in Huntsville while you were having chemo (meeting up 2 times in 3 weeks in 2 different states is pretty cool!!) Letting you know when I leave is redundant!! Keep up the good work, and let us know when you hear something... I should be back in a month or so and we will touch base again!! Great to see you again too!
Well, since my name was in the post, I guess I'm obligated to write, correct? It was great meeting up with Tiffany, although it was quite funny that we both had to fly to Houston when I was about 20 minutes from her in Huntsville the week before... I'll be in Huntsville next week, so if you're back Tiff, we'll catch up again, maybe Wednesday night for dinner? Sorry I missed Kris by a few days, that would have been cool also. And Gavin, yeah, you can keep the haggis brother... no thanks... And from someone who was not originally Jewish but is now, there's nothing like whitefish salad on a bagel for breakfast with a slice of cheese and a thick chunk of a tomato on top of that... OK, now I'm hungry...
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!!!