marylloyd

Dad’s Daughter,
My husband has had treatment at OSU under Dr. Bloomston and Saab. We have been very happy with their care and I actually credit them with saving his life thus far because of their unconventional treatment of him. I know for a fact that he would probably not be here now if he had gone to Cleveland or Pittsburgh for his initial treatment simply because they would have given him chemo only which will not cure this cancer. At OSU they gave him agressive radiation therapy that I have never seen listed as a treatment other than at Mayo as part of their protocol prior to liver transplant. That being said many patients have had care at the Clinic and are very happy and satisfied and we have and are going to Pittsburgh (UPMC) for a second opinion. I think second and third opinions are incredibly important in order to make the best decision about your care. MY opinion is that you need to go to teaching and research facilities because the DRs are going to be up on the latest treatments and they will have the most updated equipment etc. I wish your Dad the best and you are doing a great job!! I hope everyone will open up and discuss all of the options available. I have been very lucky the past 3 1/2 years because my husband has always been a very willing patient. He lets me do the research, make appointments etc and just goes along with me. It’s a lot harder as the daughter but don’t give up hope. Let us know if we can help in any way. Mary

Hi Guys,
Sorry I haven’t posted lately- I actually had to log back in but have been keeping track of everyone and want to wish all a belated Happy New Year! Every year brings new challenges and I believe Teddy and Tom are dealing with the same issues as long time survivors! Tom had his MRI in Nov. and it continues to show absolutely no change BUT… his tumor marker is up into the 500 range. It is getting scary but they still think it is due to obstruction rather than tumor. People with cirrhosis and cholangitis have tumor markers in the tens of thousands. I would be more panicked but the wierd thing is that looking at his history over the last year it does make you wonder. One year ago his CA19 was 46( where it had been for 2 years). He had a stent in place for most of those 2 years. Last year in Feb they removed the stent , did a balloon dilatation to open up his duct, took four tissue samples of former tumor area that came back negative, and he has not had a stent since. In April his tumor marker was 129, in May it was 143, in August it was 338 and in Nov it was 559. SO what the heck is going on?!! His bili is up a little but less than it was in August. He looks good and feels great. No one really can say what is happening because no one has had this experience before. Klatskin tumors never go away with radiation and Xeloda, yet his did. I can’t help but think his duct is closing up because he doesn’t have a stent and that’s causing the “obstruction” and increased tumor marker. It sure seems possible.
Lainy , our Drs all want MRIs because they say the PET can give false positives and the MRI gives a clearer picture of the ducts, etc. He said if they did a PET and it showed something they would end up doing an MRI or MRCP as follow-up anyway. I am going to take Tom to Pittsburgh for one of their world renowned CAT scans. It’s been three years since he was there and I would rest easier if they scanned him and also saw no change. I would ask for an MRI for Teddy. I agree with Kris. I don’t think you can be scanned enough!! HA! Of course I’ve never had a CAT scan or MRI so it’s easy for me to say!
Stay warm everyone! Kris, I hope you bought some warm coats ’cause it’s going to feel like Sweden in S.C. this weekend if it doesn’t all ready!! Mary

Michael,
I haven’t been on lately due to being under the weather myself but I’m glad I got on and read your posting today. I think your Dad is getting the very best treatment available. My husband had radiation and chemo like your Dad is receiving after a failed liver resection attempt and is doing great 3 1/2 years after diagnosis. His tumor has shown no sign of returning even though his tumor markers have been rising recently. The one thing I can say with much assurance is that your Dad needs to keep his immune system strong. I honestly believe that is one of the main reasons my husband has done so well. After all he went through he never gets sick. I catch everything I come into contact with and he just goes on like he’s never been sick in his life!!You can read about a lot of supplements under my postings and others here. Everyone has their own regiments and the Docs will be probably say no to a lot of things during chemo but I would get him started as quickly as possible. The radiation will cause some damage to the liver and foods and supplements that help the liver regenerate and stay healthy are very important! Please ask if you have any questions and I hope your Dad continues to do well. Best wishes, Mary

Marion,
I really don’t know anything about cat scans. I just know at the UPMC they insist theirs are the “best”. They were sure that they would find something that OSU had missed with their MRIs. Luckily they didn’t which reassured us greatly. That was almost three years ago so I think maybe Tom should go and get one of their”super” cat scans again.It has nothing to do with his Drs at OSU and our confidence in them, I just think it is good to get opinions from different sources.
Yes, Betsy we have a large patch. We’ve been doing this for twenty years but are concentrating on produce and selling here at our farm more and more. I love having the kids here picking out their pumpkins. They like to come here instead of picking them out of a bin at WalMart! They are a lot of fun!!
Good luck next week with your consultations. Being a dog walker is a good thing in my opinion. Tom spends most of his time outside, ecspecially in the warm months but even in winter and I really believe that has helped him too. All the nutrionists talk about needing vitamin D to battle cancer and other ailments, one look at him and you know he is not in need.
Take care, Mary

Hi Betsy,
I know most people think the world of their Drs but my Tom has one of the best around. I e-mailed him earlier this afternoon asking him about the PET scan idea and he already responded. He is a busy surgeon at a huge hospital! I can’t believe the individual care Tom receives. It’s always been unbelievable!! Anyway, he explained that the PET scan only has a 50% accuracy rate in terms of CC and that it would most likely show a false positive. He said they would follow up with an MRI or MRCP or a cholangiogram anyway if the PET scan did show something. Tom has always had MRIs and they seem to feel that is the best way of scanning. I don’t know much about the technology but I know they questioned things in May so they did a repeat with different dye?, imaging?. something and it came back the same. We are hoping his numbers are up due to inflammation caused by obstruction. He has not had a stent in since February and I used to like the idea that they would go in every couple of months and have a look around. He’s better off without them but he does get cholangitis once in a while and that could be the problem. This is a crazy ride but I guess all cancers are. My sister-in-law had breast cancer a year ago. Her chemo caused her to develop the most serious type of leukemia. She is in Cleveland Clinic right now with meningitis that was caused by the shunt put in her head to administer the chemo for the leukemia!! She almost died over the weekend but is doing better now. My brother was getting advise from me on being an advocate and had a real crash course the last few days. The more I talk to him it just seems like I’m reliving all that we went through 3 years ago and what you’re going through now. You just have to stay calm and research as much as you can about supplements, foods etc and then do what you can to remain healthy and active. Stress is not good!
I guess if I was you I would ask the radiologist about an ERCP and whether that would help to see what the blockage actually is. We had a great radiology oncologist and hopefully you will too. Take care and keep in touch. Mary

Betsy,
Kris is right. There are other people on here who have huge tumors and normal bloodwork. Kris I can’t believe they don’t see Leroy except with a pet scan. My husband has been getting MRIs every three -six months with no change showing but his tumor marker has been going up. I think I may ask if they will do a pet scan if it is even higher next month. Betsy, my husband has been receiving his treatrment at the James (OSU) in Columbus. His tumor went away after intensive radiation treatment and chemo. He has not had any treatment for three years now and is doing very well other than problems with scarring in his bile duct which causes obstruction at times. Why are they saying there is an obstruction of your bile duct? Can they actually see a mass or is your bili high? I don’t quite understand. On my husband’s scans they can see an area that they watch closely for any change from scan to scan. They actually took tissue biopsies of that area last February and thay came back negative. I think you should ask your Dr about having an ERCP to investigate. At OSU they have a camera device that actually can go in and take pictures during the ERCP. It helps to determine whether they are dealing with scar tissue or tumor and they can take a biopsy at the same time. I would worry about waiting three months to figure this all out. This cancer has a tendency to either be very fast moving or slow. My husband has been lucky to have the slow type but I still get antsy and worried if I feel they are not aggressive enough. This is worse than any rollercoaster ride I ever went on at Cedar Point!! HA! Take care, Mary

I’m sorry Kris that you are having such a rough time. I really hope you can have surgery. Just try not to get too down. We are all praying for you and wishing you the best. At least it sounds like your Dr is still fighting for you and not writing you off. That’s good news. I think that happens way too often. Take care!! Mary