So sorry to read this thread and see how fast things went. My most sincere condolences on your loss.
Hey Matt, like everyone said, sorry you had to find this site. I'm 42, was diagnosed after the resection surgery officially, but am 2 years cancer free as of 9/14/13. This web site is great and very informative. All of the moderators have a ton of insight and if you have a question, just post it and you'll get a helpful response.
Best of luck with your scans and in getting a game plan together. The game plan is probably the most important thing, knowing that you're doing something instead of just the waiting. Keep us updated!
Well, I haven't been around the boards in a while, my apologies for sure. Saw Tiff in December during my unfortunate last trip to Huntsville as I switched jobs and am now not travelling for work any more. I'm selling homes for a luxury builder here in Sarasota, so anyone know someone interested in moving to Sarasota and wants to build a new house, let me know! Curious about the stuff we build: www.johncannonhomes.com will give you a good idea!
Scan results: "Stable Examination. findings are not suspicious for tumor recurrence or metastatic disease." Yeah baby!!! My 2 year anniversary was 9/14/13, how appropriate that it was on Yom Kippur, day of atonement and fasting. I haven't felt better and am doing great! Kids doing well in school, Bat Mitzvah on 10/19 for my daughter so the wife is FREAKIN' CRAZY right about now... But then again, she's amazing and doing everything coordination wise. I'll help, but she's the glue for sure with this event. Bonus this year, I get to eat! 2 years ago at my son's Bar Mitzvah is when all of this started for me. I should be able to enjoy myself a bit more this time around!
Hope everyone else is persevering, has positive vibes and maintains hope! Positive attitude is a must! I stopped by the Chemo wing at my oncology appointment today to say hi to the nurses. They were all very happy to see me, which you would expect when someone has the positive experience I have had so far. Grateful is an understatement for sure... Great touching base, will be back more frequently if at all possible!!
Re: Survival...Please tell us your latest milestone (81 replies, posted in Good News / What's Working)
2 year scan: "Stable Examination. findings are not suspicious for tumor recurrence or metastatic disease." Yeah baby!!! Will post in Good News also with more details...
Fantastic news!! Great to hear!
Yes we do!! At Men's Warehouse now getting Hunter's suits. 1 of the 2 isn't cooperating though...
Well, 2 year CT tomorrow... 9/14 is 2 year resection anniversary. really looking forward to drinking 2 bottles of that crap tomorrow morning too. finally got my renovation permit, block is run, need to form and pour the beam and then install a door and two windows to proceed with the demo. hope all is well with everyone and so sorry for the lack of posting on my part...
Re: Please pray for Tiffany, she is getting a liver transplant. (35 replies, posted in General Discussion)
Haven't been on in a while, and what a great way to touch base seeing this post!! Way to go Tiffany! All of our prayers are headed your way for a fast recovery!
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...
Well, let's see, what's happened over the past couple of months...
Started remodeling one of the houses we own. Well, remodel is a bit of a deceptive term. If you consider all cabinets are completely out, all flooring (carpet, wood, tile) is gone to bare concrete, no plumbing fixtures are present, walls around laundry and kitchen are demolished, walls above doors in living room are demolished, and I'm about 25% of the way through modifying trusses to carry the vaulted ceiling into the kitchen and allow me to demolish the load bearing walls, then yes, it's a remodel. Really a renovation though...
Went fishing on Mother's day at the inlaws, had a rod laying on the dock and a fish decided to take it for a swim. I jump in, get the rod, fish still on, climb out of the water and break the brittle plastic ladder. As I get on the dock, (pole was resting on the dock again as I climbed out) the fish takes off again. In I jump, find the rod, still have the fish, put the rod on the dock after loosening the drag, try to climb out putting my foot on the piling, oops, foot slides and barnacles do a number on me. Yell for my son, they ALL decide to come out as he says to them "Dad 'fell' in the water!". I didn't realize 'fell' is the new definition of 'jumped in of my own volition to get my $120 fishing rod". I hand the rod to my daughter, she brings in the 20" redfish, they lower the boat and I climb out on the boat ladder. We had that sucker for dinner that week... didn't lose the fish or the rod, but took a week and a half for my cuts to heal up...
Anyway, that's all with me so far. Weight went up to 217lbs, I've been working on my diet and have gotten down to 206, I figure about 10 more pounds and I'll be in fighting shape again!!!
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, firstname.lastname@example.org 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!!