marylloyd
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Tom went to his followup appointment yesterday after being hospitalized two weeks ago. His liver enzymes are just a little high after being SKY high while battling massive infection. His bili is great- 1.3, but his CA19 has jumped clear up to 2246. They’re telling him he has pre-cirrhosis so I’m hoping that is what is causing this huge jump. We’re going to discuss a plan tomorrow but he has to “get rid” of the prostate cancer first. Best wishes to all- I saw a robin today. Spring is right around the corner. Mary
Hi Bill,
My husband has been a survivor for 3 years and 9 months after an unsuccessful resection attempt. They have been talking to him about a liver transplant also but he sounds just like you. He kind of likes the liver he has regardless of it’s limitations! He’s also battled infections-the last one just 2 weeks ago. Just like Tom above he was hospitalized for 5 days and we thought we might lose him. He’s fine now- he says about 95%. All I can say is we work very hard to keep his liver healthy in order to fight the cancer and infections. I’m intersested in what you are doing- there is a lot of info on here re: what others are doing, supplements, treatments etc. Best wishes to you and I’m glad you have such a great caregiver. MaryMy husband Tom has received his treatment at the James Cancer Hospital, part of OSU Medical Center in Columbus Ohio. His original surgeon and continuing care Dr. is Mark Bloomston. He is also seen on occasion by Dr. Tanio-Bekaii Saab. We have also gone to the UPMC Liver Cancer Center in Pittsburgh, Pa and seen Dr. Clarke Gamblin , basically for second opinions and possible liver transplant options. Based on a scale of 1-10 I would give all of them a 10. Mary
His eyeballs are white today- yay!! That’s the best way for me to judge his condition. He always looks a bit tan, even this time of year. One of our friends said he was the healthiest sick person he’s ever known. Healthy as can be one day and in the hospital the next. Oh what fun all of this is. We were all ready to leave yesterday, he was getting in the wheelchair and one of his Drs came in and said he needed one more dose of a potent antibiotic before he left. Of course hey had pulled his IV’s so they had to put a new one in. It took them 2 hours, even using their fancy, high tech ultrasound machine to get a new one started- for a 20 minute infusion! He has no veins left. I can’t imagine what all of the patients on here go through. You are some of the toughest, bravest people in the world!! Mary
Joyce,
I just devised my own “optimum” liver health diet. Basically a vegetarian diet, with very little meat , little dairy, no cheese because he can’t handle it, little sugar, no fats, fresh carrot juice, etc. Just whatever I read that helped a stressed out liver- and his is stressed! They are saying he is in pre-cirrhosis because of all the scarring. He is home today, but it is unbelievable how sickly he is compared to a week ago. MaryMarion,
I believe the rising tumor markers are from inflammation, infection and slight obstruction. He has a stent in now, at least temporarily, so we will see if they go down once this infection is cleared up. They will probably leave it in for a month or two and if the markers go down then that will prove that it is not from recurrrence. Like I said, I don’t believe he has any recurrence regardless of whether the Drs. feel the same way. Until they see something on a scan, I think he is doing fine. I want them to remove the stent, then no more ERCPs. His liver needs a break! Thanks for your good wishes. MaryGreat news Nancy and I ditto everything you said, ecspecially about Jeff and Peter. I really do miss them. Keep bringing us good news. As I said earlier today there is always hope. Mary
Okay, this always happens when I post something on here. It changes hourly. No cancer, biopsies were negative and dilation above original tumor site was infection( pus, yuck!). This is what I am sure of anyway, whether DRs. are on board or not. As far as transplant, unless an exception is made Tom has to go three years after treatment for prostate cancer with no recurrence before he can be put on the “list”. So, back to the “optimum” liver health diet I had him on after he was nuked three+ years ago. It worked then, it can work now. At least this is a wake-up call for him, he has to behave better and watch his diet! No more sneaking chips and candy! Ha!
Kris,
I’m sending you lots of good vibes and love to help fill your buckets of hope!! Take care of yourself. We all feel your anticipation and probably dread at the same time.
I promised myself I would never ride a rollercoaster again after my last ride on the Magnum (Cedar Point), but the last three years and now 8 months have been a continuous one.
Best wishes to all, MaryJust got an e-mail from the Dr. Cancer may be back- we don’t know what’s going on. I don’t like this. We haven’t had to deal with this for over three years and it’s hard to take. We’ve been blessed with a lot of quality time but you always want more. Mary
Kris,
If anyone can beat this cancer you can!! Great news that they will do surgery! I hope you continue to get good news on Thurs and plans can move forward. Take care of yourself and remember we are all thinking of you and wishing you the best!! MaryKris,
I love your title. I kind of feel the same way. No plan, but a plan of sorts. This cancer business is a real drag!! I’m glad you’re feeling well and your Drs are continuing to fight on! We’re all sending prayers and positive thoughts your way! Take care , MaryThanks Marion,
The radiology report came back negative for any recurrence, everything looks good. But the prostate biopsy came back positive for cancer on the right side. We really don’t know more than that. He’ll have an MRI of his prostate tomorrow then meet with the Dr. on Mon. Most likely surgery will be the treatment course because he really isn’t able to have more radiation.I guess if we had to choose it’s better to deal with this than cc recurrence-at least this is curable. Take care, MaryHi All,
I don’t think we should put too much stock into tumor markers going up and down. I almost wish they wouldn’t do the test so much because it isn’t a reliable test of what’s actually going on. There are too many variables that can effect the results. We are headed to the UPMC Monday and if their scans show no change in Tom’s condition since 3 years ago then I’m going to quit worrying about the stupid CA19 and just go on as always, assuming Tom is doing fine. Until they see something on the scans they aren’t going to do anything anyway. I know people on here that have tumors the size of baseballs and their tumors markers are normal so what does that tell you? I guess we will find out a little more in a few days. Have a great weekend all!! MaryHi Betsy,
Glad you’re feeling better. My husband had the procedure you’re having last February and has been without a stent since. They also took pictures and took tissue biopsies while they were in there dilating his duct. That’s something to ask the Drs about. Brushings aren’t always conclusive. They say if they come back positive then you definitely have cancer cells present but if they come back negative you still may have cancer, it’s just not showing up. The tissue biopsies are very reliable. How is your bloodwork? I hope everything goes well. We have been through a lot of episodes of cholangitis through the years. It gets very scary. Take care of yourself!!! MaryWe couldn’t get into Pa until the 25 th. They don’t have clinic on the 18th due to the holiday so will let everyone know what the news is then. Tom’s cleaning today- I’m supervising. There is one room in our house, basically his, that I refuse to clean. Too much “stuff” piled around. I like my bedrooms to be sparsely decorated so they are easy to clean. No piles of books, magazines, clothes etc. We have a big old house so the upstairs is always hard to get to. I’m lucky to keep up with the main floor ecspecially certain times of the year. Take care all, Mary
