marylloyd
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Belle,
My husband had the same thing happen in June 06. They attempted surgery but discovered his klatskin tumor had involved too much of both bile ducts to be resected. They took out his gallbladder and biopsied some lymph nodes which were all negative and closed him up. He had no liver involvement. After recovery he had 5 weeks of IMRT radiation with Xeloda followed by brachytherapy. His tumor has gone away and they are actually telling him he is in remission-so there is hope. His only problem now is dealing with the stent. His bili had been climbing slightly and Fri he did not feel well and slept most of the day. Sat. he woke up itchy with yellowish eyeballs and dark urine. I made him drink lots of water and really watched his diet and by Monday he was much better but is going for stent replacement( or removal ) on Thurs. Does your sister have stents or drains in place?
I would seriously check about radiation. There are others on this board that have had good success with klatskin tumor shrinkage with a radiation/chemo combo or other types of radiation therapy. They are slow growing tumors so I feel that if you are able to shrink them significantly it will probably take a long time for them to grow back. Take care and try to stay positive! MaryCandy,
Why did they put drains in if there is no mass? Were the bile ducts obstructed? IS there dilation of the ducts? I really don’t understand how this works sometimes.My husbands first scan just showed dilation but he was almost completely obstructed. THe MRIs and Pet Scan showed the tumor. Can they see anything when they do the ERCPs? I would go to Pittsburgh UPMC if at all possible before any surgery is done. Good luck and take care. MaryJoAnn,
WE went to see DR. Gamblin a year ago basically for a second opinion as to the status of my husbands condition. We really liked him too. He told us every thing looked good and that OSU had done a good job so we are continuing the screening there. My husband just had chemo and radiation and had excellent results so your Dad should be fine too since his tumor was surgically removed. Good luck. MaryCandy,
I know some people that have been treated at both and I think University has been given the highest rating. THese people weren’t going for CC though. My husband goes to OSU and we have been very pleased and I’ve spoken to others that have left the Cleveland Clinic for OSU and were happier. At this point because of where we live if my husband has any recurrence I think we will go to the UPMC in Pittsburgh. They actually have a very highly regarded liver cancer center and are probably one of the best in the area as far as research and new treatment techniques. IN general where I live 40 miles south of Canton everyone seems to be of the opinion that you should go east or west but not north. The lady that runs the health food store we go to says people live longer in her opinion if they get treatment in Columbus or Pittsburgh. I don’t know but I do know that you should get several different opinions and not accept the opinion of just one DR and not look further. THey really don’t know a lot about this cancer and treatment seems to vary depending on who you talk to. Good luck and best wishes. MaryThanks Kristen,
My husband is like you. He has had very good luck so far for no real reason other than just luck I guess. I’m glad to hear a long term success story because I worry all the time about when the shoe is going to fall but maybe it won’t. You have a great attitude and he does too and maybe thats part of it. Continue doing whatever it is you are doing and the best of luck to you!! Take care. MaryLisa,
I’m glad you are doing so well. I understand your feelings because I have mixed emotions sometimes posting about my husband being a “miracle” as far as I’m concerned. He went through the same treatment as you followed by brachytherapy and has been a great success story so far.!9 months and no sign of the tumor and no treatments for 14 months. It’s very hard to read all of the posts from the grieving families because I keep wondering when things are going to fall apart! But we can’t do that- we have to be happy and enjoy each and every day. Continue everything you are doing and I would check into some supplements if I were you. My sister-in-law was diagnosed with recurrent colon cancer in August and had been having a lot of pain and problems with protein in her urine which was keeping her fron getting her Avastin. She started on the regiment of supplements and foods that I have been giving my husband about 5- 6 weeks ago and this past week was the first time she had no protein in her urine and all of her bloodwork was good. She has more energy and has not had to take any pain pills for more than 2 weeks and can even sleep on her back which she couldn’t do before.She can no longer feel the swollen lymph nodes in her abdomen either. Prior to starting the supplements there was some shrinkage but nothing significant.They were just hoping to keep things stable.The worst thing is the nurse flipped out when she told her what she was taking now and said she should quit immediately but when my sister-in-law asked her about the bloodwork and she had to admit that it was better than it had been in 6 months she didn’t know what to say! As far as my brother and sister-in law and we are concerned if they aren’t going to promise a cure and are telling you that you are going to die you really have nothing to lose and everything to gain.At this point I would have a hard time even going along with the whole chemo regime. I really wonder whether it actually causes the liver to fail.It would be my husband’s choice as it is yours.I do think some people are simply able to handle it better than others. Take care Lisa and keep up the great attitude!! MaryDear Pam,
I’m very sorry for your loss. There are no words than can really help but know that all of us are sending you and your family hugs and prayers for peace and comfort. Your husband sounds like a very good person that will truly be missed. MaryDear Charlene,
I’m so sorry for your loss. I had hoped your father could continue fighting. He was such an inspiration. I’m sure he was just simply too tired to battle further and he is now in peace. My thoughts and prayers are with you and your family in this difficult time. MaryLisa,
I don’t think there is a “norm” when it comes to this cancer.I think there are obviously some types that are much more aggressive than others.What the types are is the difficult part to understand. It just seems that some people regardless of whether they have a resection or not are unable to fight the beast. Others that I personally know of including my husband were not able to have a resection and are doing just fine with their treatments or even with no treatment. The truth is that the more I read on here and elsewhere the more hope I have for my husband’s long term survival. The statistics he was given were 6 months without treatment and 2 years with treatment. But I have observed ,unfortunately that there are many people that pass away within weeks or a 2-3 month period which to me means that there are some that must make it a lot longer for the statistics to even be 6 mos- 2 years. And those are old and not very reliable statistics anyway!I don’t know if that makes sense or not but basically throw the statistics out the window because they really don’t matter. One medical person told my husband that in his opinion some people are just better able to fight cancer and handle chemo etc., some just can’t. As far as the main cause of death I think it is probably liver failure that is caused by infection or just breakdown of the liver from the tumors, chemo etc. I have always felt the most important thing is to do every thing you can to promote liver health. I give my husband supplements and foods that aren’t just anti-cancer but are really good for the liver and help it regenerate from any damage that has occurred. He had a lot of radiation so it was important to repair the damaged cells but all drugs and chemo are hard on the liver so any thing you can do to keep from stressing it is good. Thank God for the internet and sites like this. We are all able to learn so much and support each other. It really is a blessing. Best wishes, MaryG,
I’ve been giving my husband Solaray Milk Thistle -one daily. I like this because most other kinds require several pills a day and this simplifies things.I think the important thing is the amount of silymarin. The solaray is guaranteed 280 mg. or 80% silymarin and 350 mg. milk thistle which is what I guess I thought was the right amount. There is another Solaray product that is supposed to be absorbed more quickly and I did get that at one time but right now things are going well as far as liver enzymes. I think it was Thisilyn so you are probably right on. I don’t know about the liquid form. Good luck aand Merry Christmas. MaryHi Jeff,
I’m sure you will be here next Christmas and many more!! You have such a great attitude, you are a real inspiration! I originally bought AIM Redibeet capsules which you can look up and buy on line. Now I am buying Nature’s Way capsules in a local store and am giving him 7 a day. You can also buy the powder and make a juice. I would also check out Maitake Mushroom D- Fraction. It’s great for liver regeneration and fighting tumors.Also foods that contain glutathione. It helps the liver boost production of enzymes that help regeneration. Avacados, artichokes and I read about fresh pineapple somewhere too, are all really good.I can’t find the info or remember exactly what it was but pineapple was highly recommended so we eat it every day. I try to throw avacados in there too but I don’t have much luck with artichokes.I don’t know what to do with them and they’re very expensive. I’m going to grow them in my garden next year. Good luck, Jeff and Merry Christmas!! MaryKris,
I’m so sorry you are having to go through all of this but them putting in a drain doesn’t necessarily mean it isn’t scar tissue. It just means something is clogging up and they need to get things flowing until they can figure out what the problem is. Don’t lose hope!! They are catching things early so try to be positive- the drains are a real nuisance but hopefully it will only be temporary. My husband had tubes and wires coming out of him all over a year ago and we laugh about it now. You’ll be in my prayers.I hope your husband is with you now! I’m like scragots, I wish I could give you a hug!! MaryG,
I agree with Jeff. Milk Thistle helped my husband a lot. Be sure to get a good quality that has the recommended amounts of silymarin. Also check out foods that are recommended for liver health. One of the best is fresh pineapple. We eat some every day. I also am big on beet root extract. My husband couldn’t tolerate having beets juiced with his carrot juice when he first got sick so I started giving him beet root supplements. It’s the only thing that I have ever read that states it’s good for bile duct health.Good luck. I hope your #’s come down. MaryThanks All ,
We just got back from our third trip to Columbus this past week (5 hour drive roundtrip) as my husband had his stent change today. The surgeon came out and said things looked better than they ever have and thinks they may pull the stent out all together next time around and see what happens. I asked him last summer if he thought that would ever be possible and he said he doubted it. He actually brought up the possibility today. That would be a great relief because we are always dealing with infection. Anyway I credit his bile duct improvement to beet root extract. I started giving him extra because he’s gained back weight and maybe that’s what has helped the healing process. They were worried about scar tissue. I am going to e-mail his original surgeon and ask about my theory.We haven’t seen him since Feb. I just would love for my husband’s success to help others. It just shows that you never know-a lot of cures and treatments are discovered purely by accident! God bless all of you.” Keep on truckin”,as Jeff says! Mary
