hamptonsarasota
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Tiff,
Not sure, but remember, his specialty (I believe) is oncology. He doesn’t have a surgical background. You need to talk to surgeons for the surgical option. They have a different approach and perspective for sure. My wife asked Jarnagin how I would leave the hospital and he was very adamant that I would ‘walk out of here’ after surgery. If it wasn’t for the hospital policy of wheelchairs, I would have walked out, albeit with a really big scar!! Try to give them a call tomorrow, see what they say. I think if you call that number, you will get Elizabeth, if you mention me, they should remember me. Cathy is Jarnagin’s main nurse but Elizabeth should be able to get you whatever info would be needed for them to review your files and records.LeeAnn,
You sent a note to Javle or Jarnagin? I’ve dealt with both, one cut on me (Jarnagin), one responded immediately to email (Javle)…Dr. William Jarnagin, chief of hepatobiliary surgery, was my surgeon at Sloan Kettering in NY, try him out, see if you can send your records to them. Direct phone to his nursing staff is 212-639-7601. See what happens…
Eli,
Thanks for the calculation links, I am out of town in Houston so I don’t have copies of what they are giving me, I fly home tomorrow. When I get there, I’ll pull out my docs and run the calcs to see how the calculations compare to what I’m getting. Thanks for the post, it’s informative and very helpful!!Kris,
From your mouth to G_d’s ears!@! Had a great week working out, hit cardio pretty heavy so far for 3 days, did intervals. 1 min at 2mph, 30 sec at 7mph and increased the upper speed by 1mph until I hit 11mph and then cycled back down by 1mph to 5 so it took me about 16-18 minutes. Did that after the weights all 3 days this week so far (in Houston by the way) so I’m feeling pretty good. My hair hasn’t even started to disappear yet, and it doesn’t look like it is thinning yet either. Oh well, when it goes, bring on the clippers!!!Jim,
So far, I don’t have hernia’s, and considering I’m back at the gym moving close to the weight I did before the surgery (225 on incline bench for 4-6 reps, 225 flat bench 6-8 reps, shoulder press on heavy set was 185 for 4-6 reps), I don’t think I’ll end up with one. Sit ups are still slightly uncomfortable with my 14″ scar, so I don’t do them. But every exercise sort of forces the abs to tighten up. Triceps with the cable machine pressing down is the one exercise where I can’t go heavy because it messes with my abs.Amen to the surgery option, if you can do it, go there, it’s the best option to get rid of everything in one fell swoop!
Eli,
I didn’t necessarily have an ‘infection’, I wasn’t put on antibiotics or anything, they just had to kind of lance the thing. They had a Q-tip with a 6″ or so wooden part and the freakin’ doc started poking and prodding and broke through the thin healed skin and I was thinking “what the heck is this guy doing”. All of a sudden, there was only about an inch of the wooden part showing, the other 5 inches he shoved into me and I was really freaked out a bit. The fluid buildup was released and the pain stopped, so I dealt with it. The packing of the thing afterwards wasn’t the greatest, but it did heal. I’m hoping that the indentation will eventually go away. I think I’ve put on too much weight and may need to lose a few pounds but with the chemo I was worried I’d have bad side effects and lose weight so I put on what I could… I guess I shouldn’t have added so many pounds!!Diana,
The important thing is your husband gets to do the surgery! That’s the best situation hands down. We wish your family the best and hope for a great surgical outcome!!!LeeAnn,
See my earlier post on your thread… I’m similar to you in that I had clean everything but couldn’t start chemo until my drain was removed, bile leak stopped, and I was off antibiotics. 1/13/12 was the first day of Gemzar chemo for me. I did one cycle of Gemzar only (cycle is 2 weeks on, one week off) and one cycle of Gemzar/Cisplatin and my second cycle starts this Friday. I didn’t start chemo until 4 months after surgery, almost to the day (surgery on 9/14/11). My CA19-9 number when they did the bloodwork in January was 37, in the normal range, and it is the only blood test that I’ve ever had the CA19-9 checked so I can’t compare it to anything.Jim makes some very good points in his post above also. We have to trust our doctors. Eli’s points are also just as good. With clean margins, chemo is almost a personal decision. My wife and I didn’t want to have something happen 4 years down the road where the doctors said “if only you did chemo, this may not have happened” so we decided to do the chemo. I’ve been remarkably lucky with no side effects whatsoever at this point. Sounds like Eli has a good read on the situation regarding a ‘kneejerk reaction’ with your oncologist, but maybe it is ‘making your decision’ for you regarding the chemo. In any event, I sincerely wish you luck with your treatment!
Great news! As your husband is apparently having a procedure very similiar to mine and we’re close to the same age (I’m 40, 41 in April), I can tell you that I was in the hospital for 9 days post surgery. I had 3 complications afterwards as follows:
1) The drain that was placed during the main surgery was removed prior to my leaking bile resolved itself (600ml a day initially in the hospital, first day at home about 300ml a day, when they pulled it out I was still making about 130ml a day of bile), so therefore I had an abscess form and they had to add a new drain that was in for about 3-4 weeks.
2) The incision from the surgery at one spot formed a slight abscess right below the surface that resulted in a trip to the ER where they poked it and released the buildup of fluid that was causing the pain. This resulted in the at home nurse ‘packing’ the abscess with gauze every day for 2 weeks until it was healed up all the way. My scar is ‘indented’ at this point and the only uncomfortable part of the scar that I have right now.
3) My drain mentioned in #1 above stopped producing bile so they ASSUMED that the bile leakage was done and pulled the drain out so I could go home a week later. For any drain that is present, DO NOT let them remove it without getting a CT or nuclear study done. It turns out the drain was blocked and I was still producing bile but no one knew it. I went home to Florida on 11/1 and 11/2 was admitted to Sarasota Memorial with a 5″ abscess of fluid that required another drain right in the middle of my chest that stayed for 7-8 weeks until it finally stopped on its own. Another hospital stay for 5 days. I couldn’t start chemo until the drain was out as I was on antibiotics for the whole time the drain was in…
I hope this info helps you with your upcoming surgery. I certainly wish I found this website prior to mine, but I didn’t know it was cholangiocarcinoma until after the surgery anyway! Wish your husband the best of luck. Make sure you get your prescriptions for yourself before the surgery date, it will help!
Amen on the support and well wishes, coming from here as well! I’m not sure of what sections of my liver were removed, I just know the entire right lobe and half of the left were removed. Within 2-3 days of the surgery, my liver functions were 100% normal. It’s a great positive that you have surgeons you trust, you have to put your faith in them at some point in this journey. Wishing you the best in your current ’embolization’ procedure and subsequent resection!!
Lisa,
Wishing you the best, hope that it isn’t anything other than a benign cyst, but if not, FIGHT!!! Prayers coming your way from me and my family. And you are right, ‘EVERY DAY IS A GIFT!!”Sharonlee,
Mom is in a better place, god bless, wish you all the best. Please accept my condolences. Do your best to keep the good memories in the forefront of your mind….Diana,
Been there done that on the Xanax… My wife took 2 during my operation, and had to pop one when the oncologist came in the room at Sloan Kettering and said we would have to do Chemo. She hasn’t taken them in quite a while but is taking Selexa right now on a daily basis (anti anxiety and anti depressant). She said doing accupuncture helped her to be able to sleep at night too. She was taking Ambien at night but didn’t like the effect of that at all. All of our doctors have said to use the meds to help, it isn’t a bad thing and so far it’s working and helping. She just chimed in that you can call her if you want to talk about it, let me know and I’ll pass along the phone number.Hope you get a surgery date soon!
Diana,
Sounds like your husbands surgery is exactly what I had with the exception that it was the right lobe and half of my left that was removed of the liver. Biggest complication I had was continual bile leakage (not 100% sure where, but probably where they took my small intestine (larger organ/duct size than bile duct) and attached it to the liver (lots of tiny bile duct connection points)). I had 2 abscesses, one 3 weeks after surgery when they took out my main drain way too early and one the day after I got home from NY. I had a drain added and it stayed in for almost 2 months before the leakage stopped approximately 3 months after surgery. Difference between us also is that I had no tumor involvement on the liver itself, it was isolated in the bile duct only. It’s great that surgery is an option. Do you have a date yet? We wish you the best of luck and keep us posted!Hi Diana, I’m 40, resection on 9/14/11. I was out of the hospital in 9 days, but had several unplanned ‘return’ trips for abscesses. Recovery isn’t the end of the world, that’s for sure. I’m 5 months out and started chemo 5 weeks ago (4 sessions of treatment, one bloodwork day) yet I am still able to go to the gym 3-4 days a week and have gained all of the weight that I lost back too. It’s a long journey, this web site is great and everyone on it can completely understand where you are coming from.
I never got hung up on the ‘why did this happen to me’, I just dealt with it. You can’t look back, only forwards and having a plan with a great team of doctors is the key. We all wish you and your family luck as you start this difficult journey….
