marylloyd
Forum Replies Created
-
Posts
-
Dear Lainey,
All of our thoughts and prayers are with you and Teddy. I hope his last days are peaceful and painfree and you continue to be strong and take care of yourself!! God bless both of you, MaryHi Justamom,
I’m so sorry about your son. He is so young to have this disease. I give my husband maitake mushrooms and have since his diagnosis 4 years ago.I give him Grifon Maitake D-Fraction, 4 capsules a day. I believe they said three per day on the bottle but Tom is a pretty big guy too, around 240 so I felt maybe he needed a little extra. He’s done very well for years now so I feel all of the supplements I give him help. I hope your son has success with his chemo. Please feel free to ask questions and come here for support. There are a lot of wonderful, knowledgeable people here. Best wishes, MaryRick,
Any irritation to the liver including infection can cause tumor markers to spike. I wouldn’t worry at all because the radiation is surely the cause. We have faced this issue for years and we really prefer that they don’t even run ca19s. Unless they see something on the scans they won’t do anything anyway-it’s just something to stress about. Tom will get his done the first of Nov. and I actually am really curious whether his goes down. He had prostate cancer diagnosed in Feb and had his seeding in July. I’m really wondering if his ca19 will fall now that those cancer cells are dead. His also tripled in Feb but he was suffering from a very severe infection at the time.Enjoy your vacation and don’t worry too much!! Take care, MaryLainy,
I don’t know what to say except that I’m sorry you and Teddy have progressed to this point. ( And don’t clean, ha!! I tell everyone I’m just decorating for Halloween with all of the cobwebs! Major cleaning comes in November.) Anyway, you two have been an unbelievable inspiration. We started on this journey close to the same time and on this blog at the beginning. We’ve seen a lot of our friends here lose their battle but Teddy has always been our “miracle man” and you have helped so many with your support and love. Just know we’re sending you all of our support and love at this difficult time and we all hope that Teddy is painfree and peaceful. Take care Lainy and give Teddy our love. Don’t do too much next week!! MaryRick,
I’m glad you’re feeling better. I think the treatment itself can make you tired and that underlying infection can really wipe you out. I’m glad you got treatment right away. I agree with Lisa too, you should never wait until your stents are blocked and you are really sick- you need to be proactive. I’ve seen my husband go from feeling really well and “normal” one day , to being so sick we’re on a dead run to the hospital the next. It’s really crazy. Take care and best wishes for a very successful outcome. Thanks for keeping us updated! MaryBob and Dave,
I hope both of you recover to full strength and get through these trials you’re going through quickly. I know all about the scar tissue vs. tumor issue.We’ve gone through this for years also and also the blockages and infections. It’s amazing how quickly someone can go from being healthy and active to incredibly sick and in the hospital. My Tom is in the hospital right now with the same problems as Dave just not as severe, thankfully. It is truly a rollercoaster ride- I know way more about livers than I ever wanted to! Also, this time of year everyone is on vacation so that complcates things too. I wish all of you the best.
Beth,
I hope Dave’s blockage turns out to be scar tissue but if not the Dr. sounds very hopeful and confident so that’s a great thing.
Take care, MaryHi Bob,
Your posts are very interesting to me as my husband just went into “rigors” and chills yesterday morning after getting nauseated and vomiting. He can be just fine one day and the next day be shaking and chilling etc., weak and too sick to get off the couch. He usually doesn’t have a fever when the rigors start but after he settles down so I can take it, he usually has spiked a pretty high one.(yesterday it was 102.7). I always thought the rigors were from infection. I never heard this latest explanation. I do try to get some Motrin in him and that does seem to help stop the shaking. He’s still feverish today and weak so the Drs. put him on antibiotics. Hopefully no hospital stay this time. Bob, do certain foods bother you? My husband gets these “attacks” everytime he eats too much dairy or fried foods It was way too much ice cream this time. I think they just clog him up which causes cholangitis. Keep us informed as you continue your treatments. You are a rare long term survivor and we wish you the best.
MaryGreat story Andie and I agree 100%. I wrote the same thing a few weeks ago about my husband. Just because you can’t have surgery doesn’t mean you can’t beat this and live for years and years. You are an inspiration. Keep the good news coming! Mary
Steve,
My husband had a klatskin tumor. I think it is more difficult to remove because of it’s location and involvement with blood vessels. My husband had an attempted resection but they felt they would have to take out too much of the bile duct to have clear margins. It just really depends on location of the tumor. His was very high up in the bifurcation area. MarySteve,
All of us understand what you and Nancy are going through as caregivers and patients. I agree with Kris regarding you asking questions. I was actually upset when my husband asked and when the Drs. told him the “statistics”. He had not questioned or read about this disease at all and when they told him 6-months to a year it really shook him up. As you can see by my post yesterday under Good News, they were wrong and that’s what I told him. I told him they were wrong and there was no way he was going anywhere, any time soon! I actually complained to the Dr. about being so negative because everyone needs hope and I think he changed his attitude a little. The only thing my husband ever said was that he needed hope. Nancy needs hope so the best thing you can do is to support her, be positive, share the stories of success on here, get involved in her care as far as her diet etc., if she is agreeable. Just making nutritous juices, giving my husband supplements, cooking healthy meals, etc. made me feel like I was able to do SOMETHING, during a time when I felt totally helpless. MY son laughs that I would have funneled that carrot juice into my husband if he hadn’t been able to drink it , I wanted him to be well so much. So just offer to do what you can for her but don’t worry about time. Just take things day by day and enjoy each other. My husband and I will celebrate our 30th wedding anniversary this August, something I never thought would happen. We are closer than ever since cancer entered our lives and I know there are other couples on here that feel the same. It just makes every day and every hour that much more precious! Take care, MaryKris,
If this site shows anything at all it’s that the “statistics” aren’t close to being right. People are doing better, living longer and receiving new and better treatment just in the four years we’ve been going through this.
I think it would be helpful to all of the new people here if more of us veterans posted about our original experiences and successes with treatments. There are so many postings from the past 5 years that’s it’s hard for most to go back and read how we all came here and our experiences since coming. I know Tom is one of the rare stories of success without resection but it would be good to refresh everyone’s memories and help give the new members hope!
Andie,
Tom had 5 weeks of external radiation with Xeloda followed by brachytherapy. This is the Mayo protocol used before transplantation. It is not done anywhere else that I have ever read about except at OSU. He takes beet root extract, milk thistle, turmeric, alpha lipoic acid, maitake mushroom D fraction, fish oil, niacin, multivitamin, resveratrol,and occasionally melatonin. Best wishes to you and your Dad! MaryBetsy,
I’ve heard good things about University Hospital. I know of sevral people who left the Clinic to go there and were very happy. I’m glad you’re getting more input into your problem. I can’t help you with your question but I sure hope you get some help to heal your bile duct. I give my husband beet root extract. It is is the only supplement I have ever seen that lists bile duct health as a benefit. Maybe it wouldn’t hurt to try it. It may help with the healing process. My husband’s ducts were very badly damaged after all of his radiation in “06 and I really feel it helped. Best wishes, MarySorry about the bad news Lainy. I wish there was a miracle now for Teddy but he has done well for a long time and just has to continue to keep fighting! Take care of yourselves and enjoy your friends and family. That’s probably the best treatment for Teddy right now, lot’s of love!! Mary
Kristen,
That’s good that you went to an experienced team. I guess it’s just going to take time. I feel so bad for you but am glad you are going ahead with your plans. What is the DRs. future plan for you? Are you going to need the drain permanently or is it temporary? At least you’ve gotten great advice from very experienced people here on the board. Take care and have a great time with your family!! Best wishes, Mary
