marylloyd
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Thanks Karen. We haven’t heard the results from the 2nd MRI but everyone seemed confident that it would be fine. I don’t think this type of treatment would be possible in any tumor but a klatskin because of its location but it sure does make you wonder if it is a possible treatment for everyone. You obviously can live with half a liver so why not try? There are so few real success stories and established treatments that it seems they are all grasping at straws sometimes!I am curious what your Dr thinks if you could let me know. Take care and best wishes to you. Mary
My husband was diagnosed with a klatskin tumor in June ’06. They attempted a resection but decided it was too risky.They tied off the portal vein to his left lobe because they were going to remove it and most of the bile duct and left it tied off after aborting the resection. The interesting thing is that his left lobe completely dissolved ( he did have to have an abcess drained) and his klatskin tumor “died” after 5 weeks of IMRT radiation along with Xeloda, followed by brachytherapy. That was a year ago, he has not had any treatment since other than from me- Dr. Mary. He just went in for his three month check-up and his Dr. actually said the “R” word- REMISSION! I have consistently told my husband that they would probably never say that word to him because they would never believe it but they did today. They actually did a second MRI today to get a few more pics because they wanted to be doubly sure that they weren’t missing anything. They seemed confident that things were fine though- they just have a hard time believing he’s doing so well. Of course so do I and my big question is now, ecspecially after reading your post Chris about the recurrence of your mother’s klatskin tumor, whether surgery may actually cause these tumors to reoccur simply by them going in and stirring things up? Did tying off the portal vein cut the the blood supply off to the tumor and then the radiation nuked it? I asked Jeff this before but I am becoming convinced that my husband’s surgeon unknowingly discovered a cure and no one else will benefit from it. It’s pretty radical but I have never read about anyone having their tumors completely go away with just radiation and chemo and no resection. Anyway I do believe in radiation and wish they used it more consistently. I think the important thing is to do whatever it takes as far as diet and supplements during and after to help improve the health of your liver. It will receive damage from the radiation and it’s very important to help it in the healing process as much as possible. Sorry for the ramble but I just sit here reading about every body having such a difficult time with recurrences etc. and I just can’t help thinking some treatments are really being overlooked. Best wishes to all. Mary
Great news Sue! My husband had shoulder surgery a month ago and the Docs were kind of concerned about the long recovery period and quality of life issues since he has this cancer and whether it was something he really wanted to deal with. I just said as far as the cancer goes he is doing so well that he is more concerned and bothered by his shoulder than the cancer so I guess he’s doing great. A year ago he really wasn’t thinking about his shoulder as you obviously weren’t about your knees. Best wishes for a speedy recovery! Enjoy your great news and Happy Holidays! Mary
Sorry, Kris. I was worried when I read your post yesterday that your Dr. was not right. I have been through this quite extensively the last 18 months and feel pretty knowledgeable. You can not get SSDI unless you have neen paying into the fund the last 3 out of 5 years I believe. I know my husband didn’t qualify because all of his “off farm” income was from teaching and he paid into the teachers retirement fund and not Soc. Security.Anyway even if you get it that does not qualify you for health care benefits(Medicare) for two years after you have been officially labeled disabled. We considered the divorce option at one point but thankfully things worked out so we didn’t have to go to those extremes! It’s very sad what you have to do to receive help. I hate to get “political” but things really need to change! My sister-in-law is battling recurrent colon cancer and they are faced with outspending their maximum life time benefit on their insurance.I just got done telling my brother the steps he needs to take to try and get my sister-in-law on disability and hopefully on Medicare in two years.I hope things work out for you. Just push your Drs. in Sweden as hard as you can- maybe you can contact someone who is politically involved to make your case for you. Here we usually contact our congressmen but there should be someone there to advocate for you! Take care and best wishes and prayers. Mary
Ron,
I’m sorry to hear of your recent bad news.I wish you the best of luck with the chemo and hope you enjoy your vacation. As far as our health care situation you are right. More than 15% are without insurance and probably half of those insured are under insured to the point that they still face bankruptcy if they become ill. They also do not receive adequate preventive care because they have to pay for it out of pocket and can’t afford it. It is a HUGE problem that will become even worse before it gets better I am afraid.Our politicians really don’t have a clue because they have never faced the possibility of losing everything you have worked your entire life for because you are unfortunate to have become seriously ill before you were eligible for Medicare.Any way I am a tree hugging liberal who NEVER watches Fox(FAUX) news and I believe we would be much better off with universal healthcare. It would not cost any more than what we are spending on healthcare now in this country because it would eliminate the obscene waste that is happening now.
Sorry for the rant! This just happens to be one of my big issues along with the Iraq. I just hope people wake up! Take care and best wishes!! MaryKris,
Do you know if this individual had a resection or other treatment? Good luck with your Dr. viits here in the US. I would check out Duke if you are able. It is one of the top rated hospitals and I tend to feel Universities give you the best options.They work as a team and are doing the most progressive research and treatments. Best wishes and enjoy yourself as much as you can! MaryEnjoy, Jeff! You deserve it! The only thing I beg my husband to stay away from is cheese, ice cream and fatty sweets. He has the stent clogging problem and those seem to cause trouble. I hope you get your bones mets under control. I’m sure things will be fine. You obviously have had time to rest and heal and thats a good thing! Take care and best wishes for a happy Thanksgiving!! Gain lots of weight! Mary
That’s great news Charlene. I hope the good news keeps coming and you’re able to visit your grandson. That will be a wonderful Christmas present. Take care. Mary
I’ve been worrying about Kris1214 since May. Her husband was young and getting treated by the same Docs as my husband. She was posting quite often and then just quit. It makes you assume the worst. There are others too.It’s too bad because you know they could really use the support and fellowship! Mary
MaryAnn,
My husband always gets MRIs. His doctor seems to think they are better. We are going to go back to the Univ of Pitts to get a cat scan the first of the year. They feel their cat scans are better and it doesn’t hurt to get a second opinion even when things are going well. Best wishes. MaryGreat news Lisa. My husband had the same thing happen after his radiation treatments. Originally they couldn’t even get the stent through on his right side and after the treatments they had no problem. I hope you continue to have the same success he has. It has been a year since his last treatment and they see no tumor. Hopefully your scans show the tumor to be gone too! I’m so glad you were able to get this treatment and it is working for you! Are you doing any dietary supplements etc?I started giving my husband maitake mushroom, beet extract and milk thistle to help the liver heal after all of his radiation. I really believe it helped greatly. I have been reading about beet root extract and it is the only thing I have ever researched that actually claims to help promote bile duct health.I know something is helping my husband stay healthy and it may be something you could try. Take care and congratulations on your good news! Mary
My husband had external radiation along with Xeloda for his klatskin tumor. He did not have pain but did suffer from gastritis which we assumed was because of damage being done. It did go away weeks after his radiation ended. I would have him drink gingerale before he ate to help bring up the gas and I think he took the little purple pill (prilosec?) and some other over the counter ant-acids. I just had to make foods that he could tolerate like pudding and oatmeal, eggs etc. She should be about done if she has had 20 treatments so hopefully she will heal soon. I hope the treatments have been successful. My husband had excellent resulkts from his. It was worth all of the discomfort! Best wishes. Mary
Dear Carol,
I know there are others here that have gone through the same thing you are. My husband never really shut me or the kids out. In fact I think he was and still is in denial. Even during his rough times he was willing to try anything he could and work hard to get better. My fear is that he is convinced that he is “cured”, even though the Docs all tell him it will be back. He may react a lot like your husband if and when that happens. I really can’t imagine what you can do . The Docs offered my husband medication early on when they were afraid he was depressed. Do they do that with your husband. It would probably really help if he would agree to try. I hope he perks up and gets ready for his surgery.He really needs to be in the best shape possible to undergo such a major operation. AS far as you crying I did the same thing. I have had many months now of clear sailing but yesterday it hit home again and I was teary all day. It seems selfish but we all just want to go back to our “old” lives and not have to deal with all of this. I look at my husband constantly to try and detect any change , jaundice etc and I know it drives him crazy but I can’t help it! Take care and if you need something to help you through you should take it too. We all need help at one point or another. Take care. You and Charlie will be in my prayers. MaryCharlene,
I have been teary all day. Your posts really hit home. I’m scared of the future. I turned 50 this year and believe me I am grateful for my birthdays. And I’m grateful my husband has been around all these years. He’e seen his kids grow uo and met a few grandkids and we are very grateful for that. I hate to sound selfish when so many have lost their battle at such young ages. It’s heartbreaking. But still as I turned 50 I thought of the years ahead and I almost dread them. I know that in the next few years I will most likely lose my husband, both of my parents and yes, as stupid as it sounds my dog whose like one of our kids. My 24 year old son is heading back to Iraq for his second tour with his National Guard unit in Nov. for a year. My father is starting treatment for prostate cancer and I have 2 sister-in-laws battling lung and recurrent colon cancer. What the hell happened to the “golden” years ?! Thank God for this site because I don’t have anyone to talk to about all this. I don’t understand why some people have so much to deal with and others seem to breeze through life.I know there are a lot of people having to deal with a lot more but it would be nice to go back in time before life got so depressing. I think you should check into getting some medication. I think I will at some point. Right now my son is still home and everyone is alive and doing pretty well. Like I said before I will stay in my bubble for as long as possible. Take care of yourself, as hard as that may be at times. My prayers are with you and all the others above. And yes, I do believe your mother will help you through!! Best wishes. MaryI don’t ever click on this topic. It’s too much to think about and bear. I haven’t cried for almost a year. My husband is doing amazingly well. But I’m crying now. I know it is just a matter of time.Our bubble will burst and I will be back to the unbearable pain and fear of watching what you all are now. We went throuh it for months. Watching him vomit, his clothes hanging on him, him sitting in his big chair curled up under blankets because he was chilled and couldn’t get warm.I’d cry for 2 1/2 hours on my drive home from the hospital-I don’t even know how I made it. Everyone praised me for being strong and getting things done that needed done-I was on top of all of it. They still do. But the truth is that if he dies I will be devastated. We have been together 24/7 for almost thirty years. I feel selfish too but I am terribly afraid of the lonliness I will go through when he is gone. I can’t even imagine it.I’m only 50. How can I spend the rest of my life without him? Who will I sit and eat breakfast with? Go to the store with. Rock on the porch with. We do everything together! I will want to be dead too. I know I will. But I won’t be able to say it. I will have to be strong for my kids. But they will go on with their lives. They will miss their Dad terribly. But I will probably sit here in this big old house that he grew up in and our kids grew up in and not be able to function.I’ll put on a good show I’m sure. But this grief (anticipatory grief is what they call it) is already too hard to bear, I can’t imagine watching him die the slow death everyone says will eventually happen.I’m sorry for all of you going through this now. I will pray for you to find some kind of comfort. But I am not going to click on this topic again. I’m going to live in my bubble for as long as I can. And as LTSO said even though he will not be here as long as I want him to be or as long as he wants to be he is here now. I’ll cherish every moment. Mary
