marylloyd
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Lillian,
It is hard to believe your surgeon wouldn’t take out the tumor if it was small and in a location that was operable. That just seems crazy but I think the stats are so bad with this cancer that a lot of Docs just don’t believe there’s any hope. We have had experience with both mindsets although all of the Docs my husband saw basically or outright told him this was going to kill him and probably sooner than later. He is now 31 months out from his original diagnosis and doing great. I would definitely start on a program of supplements that help build up your immune system and check into the radiation option. After all the time I’ve been on this site and researching this cancer I’ve yet to see any definitive evidence that chemo alone really does much other than some shrinkage here and there. I do believe radiation is effective though, along with chemo. Our Docs said the chemo softened the tumor up for the radiation to zap it and it worked! Get a second or third opinion and definitely consult a radiation oncologist. All of these different Docs have a different approach to treatment and how they view your chances. The surgeons and radiation Docs seem to be the most positive and the oncology(chemo) Docs seem to be the least positive. We’ve experienced that and I’ve also watched TV shows where the exact same attitudes were displayed as we experienced by patients and Docs on the shows. These were shows where new cancer treatments were being tested. The oncologists had told the patient there wasn’t anything more they could do and go home and get your life in order and the radiation Doc said he could cure it and he did. Radiation has come a LONG way the past few years! Anyway,take care of yourself and keep up the great attitude and start checking into your options as soon as possible!! Best wishes. MaryHi All,
Jeff I love your attitude and I agree 100%. It just seems the more invasive the treatment( surgery,etc) the more damage can possibly be done. I realize surgery is the best initial treatment in most cases but I do wonder if it is the only cure. My husband has been such a rare bird and responded so well to his chemo and radiation that I sometimes wish I knew whether he would be doing as well if they had managed to have the resection initially. I received an e-mail back from our surgeon and he said he is in no hurry either.He said he wouldn’t even do the surgery unless there was absolute proof that the tumor had returned so thats good. We’re all on the same page at least.The oncologist is the one pushing more because he is completely convinced it will be back.
Jeff, I told Tom it’s time to start adding a few new things to his routine too as far as supplements and exercise etc. The oxygen therapy sounds interesting and makes a lot of sense. I really believe in the alternative ideas ecspecially to improve your quality of life. Tom had VERY extensive radiation and he would not be in the shape he’s in without all of that but I really believe the supplements and his attitude have helped tremendously. He just says that he doesn’t think it will come back and thats that!! Hey he knows his body better than anyone so hopefully he’s right~~ Take care Jeff, we are all rooting for you to continue your fight. You are a true inspiration- actually all of the patients blogging on here are! I’m amazed at how strong everyone is! Best wishes to all. Lets hope we will have more funding available for new research with our new administration. We need to find a cure and more affordable treatments and create jobs at the same time too! Heres to 2009!!! MarySaracita,
The “magic” mushroom pills I give my husband are Maitake D-Fraction by Grifon. I give him 4 pills a day. 2 in the AM and 2 in the PM. They supposedly help the immune system and fight liver tumors and help liver function. He has done great so I can’t help but think they work along with other supplements I give him.. Good luck. MaryI think you’re right Lainy, about the second opinion(and everything else for that matter!!). I told Tom on the way home today that I would go down on the 26th to Medical Records and get them to send his records to at least 2 other Drs. that would give their opinion.I’m thinking Dr. Jenkins from the Lahey Clinic and a Dr. from Duke? Does anyone have any other suggestions of places that would review records without an appointment?I really think he would go ahead and have the surgery at Ohio State if he decides that’s what he wants and others concur that he should, to be “safe”. I don’t know. This will be a really tough decision. There are just so few people to compare results with that we really can’t know for sure what to expect!!His gastroenterologist admitted that he had never seen anyone do as well as Tom with the treatments he had.If he didn’t have the stent issue I think it would probably be a definite no to surgery at least at this time.We’ll see in a few weeks! Take care Lainy, I’m glad to read how well Teddy is doing! Keep up the good work. Mary
Kris,
i agree with Jeff. My husband had the same symptoms as you for several weeks hen he first started his treatments. He could not keep anything down!! They kept giving him IVs and zofran etc and finally discovered that his liver had abcessed and blocked off his colon so nothing could go through. As soon as they drained the abscess he was fine. I would definitely check into the possibility that you are simply clogged up!!Try what Jeff suggests and see if that works before! Sorry you are so ill. I hope you figure things out soon. Take care. MaryGreat news Jeff. You just keep on truckin’! You are a miracle. My Tom went in for a stent change and they inserted a microscopic camera to try and get some pictures on Monday. He wasn’t sedated enough for them to get many this time so they’re going to put him under anesthesia in Jan and try again. We have a new Dr doing his ERCPs and he seems very intrigued by Tom’s success so far. He says what he saw just looks like scar tissue. He said he’s never seen anyone have this success with radiation and chemo. We all just have to be grateful everyday for our miracles!! Happy Thanksgiving to all. Mary
Charlene and MaryAnn,
I meant to say god bless both of you and your husbands also. Your husbands know how much you love them and appreciate all the love and care you have given them. My husband walked in while I was writing my earlier post and caught me crying. I’ve always tried to not get emotional in front of him but it breaks my heart to see so many of my original friends on this board (almost 2 1/2 years now) losing their battle and going through such difficult times.It really brings reality home. Take care of yourselves and know we are all thinking of you. MaryDear Jeff, Charlene and MaryAnne,
I feel so sad for all of you and what you are going through now. Charlene and MaryAnne, I just dread the day that I may be in the same position as you two. It is so hard to imagine but I do imagine it and it breaks my heart.
Jeff,
What can any of us even say to you? You are strong beyond any thing I can imagine to read these posts and keep coming here and giving your support to everybody. We just love you and pray that Tarceva will be a miracle for you. If not, then it sounds like your head and heart are in the right place and I wish you peace and comfort! I know how much I appreciate that I have been given these extra years with my husband.We are so much closer than we were even 2 years ago and in a way that makes me even more sad because I know how devastated I will be if something happens to him. But I’m also grateful beyond words for the love we have shared all these years. It’s the same with your wife and family. They will never look at caring for you as a burden. They just want what’s best for you! Take care of yourself and god bless you. MaryWayne,
What was it that the gentlemen had? I’m just curious because my husband’s initial biopsy did say that it was nonspecific. Not quite sure what that meant but everyone involved in his treatment said it was cancer.My husband actually underwent the entire Mayo protocol but at Ohio State as his treatment. He also had brachytherapy.He is cancer free as far as they can tell 2 years after all of his treatments. He is very rare also.Hi Mercedes,
I don’t think it’s absolutely necessary to stop dairy products, it’s just that sometimes dairy can cause problems. My husband has a stent and dairy causes it to clog because it seems to cause more mucous in the digestive tract. Some people actually get sick eating dairy after surgery. It just depends on the individual. I feel it’s the fat content more than anything MaryJoyce,
I’m sorry for your loss. I really hoped things would work out but it was just too much for him. He went through so much the last few weeks Take care and we will all keep you in our thoughts. MaryHi Jeff,
I read or heard something two years ago about using pig ducts just like they do with the heart. I do think it’s being studied but not used yet. We may go for a day or two. He’s still not totaly out of the woods. He was doing great before they “messed” with him. They want to do more but I think they should just leave him alone and let him heal. I swear the more you you do with this disease the worse things get. He had a different Dr do the stents this time and we just want the old Dr and the old routine of going in and changing them when needed. That worked for 2 years so it seems smart to continue! Hope things are well with you! Take care of yourself and enjoy the great fall weather. I’m not ready for winter yet!! MaryWe had been planning a few days away after Tom had his stent put back in on Mon so we headed out at 5 am Weds for upstate NY and Vermont. I was really worried that Tom did not look well- his eyes were more yellow than before they put the stent in etc but I didn’t want to argue with him about going. He was really excited to get away! (We don’t go much!!)He kept itching more and more all day and we finally stopped and got to bed about 9. By 11:30 he had gotten up to go to the BR and finally admitted that he was getting alot worse so we checked out at midnight and drove all the way back home! We got in at 9 AM and I called the Docs in Columbus and I ended up taking him down there (2 1/2 hours) to be admitted. They had to go in and put a new stent in, the previous one had slipped out of place and was blocking off the duct completely.He came home yesterday and is doing alright now. It just shows how insidious this disease is because it may not even be the cancer itself that does you in – it’s all the complications that arise because of it. I know if he has to keep having stents it will shorten his life expectancy regardless of whether the cancer returns or not. I think I will send his records to some different places to see if they can do something about the strictures in his duct. I’m thinking Dr. Jenkins and maybe Duke-any other suggestions? I don’t even know what they could do but his Doc in Columbus is talking about trying something but I’d like to get a second or third opinion. Thanks, Mary
Have a great time Kris. Your parents will be ecstatic to have you home for awhile! I know. My two sons keep leaving on extended “trips” and we are always so happy to get them home for awhile-just wish it could be at the same time!! Enjoy yourself and rest and relax!! Take care, Mary
Hi Peter,
Your site is great. I loved your pitures. Sorry you are having to deal with more decision making. It’s nice to have things go smoothly so we are able to forget reality for awhile. We will be making some decisions soon too and I have always been intrigued by Dr. Jenkins. I think we will send Tom’s info up to him and get his opinion. We were in Upstate NewYork heading to the Adirondacks on Weds. Due to complications from Toms stent placement on Mon ended up driving all the way back home Weds night after a few hours of sleep. I want to go back up after looking at your pictures. Maybe we’ll go see Dr. Jenkins. Take care of yourself. Keep enjoying life as you seem too. That’s the most important thing! Mary
