marylloyd
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Hello Pam,
I’m sorry to hear about your husband. You are not alone, unfortunately many of us have had our great plans of long life and dreams of retirement upended. My husband’s Dr. has wanted to put in a metal stent. We have said no up to this point. It seems too permanent and my husband has been able to have his plastic ones changed without any problem up til now. He does get bouts of cholangitis usually when it is time for the stent change. They have been leary of giving him too many antibiotics because he is allergic to 2 of the main ones, Flagyl and Cipro.I think there are people that do take them on a routine basis and do alright. I would be afraid of building resistance to them.I don’t know much about the U of Penn but we went to the UPMC and were impressed with their program. If you read you will find out a lot of information about different chemo treatments. My husband has mainly just had radiation along with Xeloda but if it becomes necessary for him to go on chemo I have learned a lot by reading here. At least I know I can ask about different combinations etc and sound informed. That is important. The Drs. need to know that you know what’s going on. You need to ask lots of questions and get more than one opinion. Good Luck!! MaryThanks Kate,
He is awesome. I just can’t imagine him losing the fight against this terrible disease- he’s worked so hard to be well! Everyone here has too, and they are all an inspiration, including your Mom! We just have to keep hoping and praying that a cure is just around the corner! Best Wishes, MaryHi Annie,
Yes my husband has been taking Maitake Mushroom D Fraction for months now. I don’t know if it has helped as far as his tumor reducing ( it can no longer be seen on scans or MRI) but I do know it has really helped his immune system.He has not gotten a single sniffle this year and everyone around him has been very sick at times! He is also taking fish oil capsules, for the Omega 3 benefits, Milk Thistle for liver regeneration, dried beet supplement, also for liver health and he drinks 16 oz of fresh carrot juice everyday. If it wasn’t for the cancer he is in the best shape he has been in for years. He works out 30 minutes every day incuding weight lifting to increase his lost muscle mass. Try any thing you can- you just don’t know what will work since everyone is so different! Best Wishes, MaryGeoff,
Our Drs. don’t seem to worry either. His ALP levels have been very erratic. As I look through his bloodwork since June and see when it has gone the highest( up to 615) it seems to be when they have done certain procedures or when he has had infection. When he was first diagnosed his liver enzymes were normal and have gone up and down since he had his radiation and chemo treatments. By what I have read and what they say it can be caused by irritation, liver damage and even the healing process ( I can’t think of the actual term right now) can cause elevations. What milk thistle does is help increase levels of gluthione, an enzyme necessary for liver regeneration. You can not take supplements of gluthione or eat foods to increase levels, I guess it doesn’t work that way. Milk thistle has been shown to increase gluthione levels by up to 35%. My feeling with my husband is that he has had damage caused by the radiation he received and the different procedures they did in order to administer the radiation( drains etc.). My hope is that the milk thistle will help his liver heal and in turn cause his ALP to return to normal. He does not have any tumors in his liver and his Klatskin has shrunk or is dormant so I don’t worry about that being the cause as much. His CA -19 was 235 in Jan but they claim that can even be elevated due to cholangitis which I believe my husband was suffering from at that time. He was having chills and fever about once a week. Since they removed one stent and replaced the second a month ago he has not had any fever. Plus, as I said his color has improved markedly which I would think shows improved liver function.His other liver enzymes were almost normal when he had his last bloodwork three weeks ago. I will write after his next bloodwork in 2 weeks to let you know if his ALP level has fallen. He will have been on the milk thistle for one month. Take care. MaryMy husband has been taking Maitake Mushroom D Fraction for months now.He is doing very well but I don’t know whether it is the result of the mushrooms, diet etc. I guess time will tell as he is not receiving any chemo or other medical treatment at present.They are watching for any recurrence as his tumor has been reduced to the point of not being visible on Cat Scan or MRI. I do believe it has helped his immune system greatly because he has not had a sniffle, sore throat or anything and has been surrounded by sick people all winter.I credit the mushrooms for that. Also I started giving him milk thistle the past few weeks due to the fact that his Alkaline Phosphate levels have been high -most likely from damage caused by his extensive radiation treatments. His color improved almost overnight. Even though his bilirubin has been normal he still had a yellow appearance to his eyeballs and skin( that may be the carrot juice) but within days of starting milk thistle his eyes have cleared substantially and his skin is pinker. He will have bloodwork in a few weeks so I am very curious to see what that shows. Mary
Kris,
It does come in pill form. It really did help my husband. Most of the nurses we spoke to said it was the best. It has come down in price too since we were getting it. My husband used compazine too but it was not nearly as effective. I agree with Dr. Saab. You have to hang in there. I read JeffG’s posts and Caroline Stouffers and some of the others and I’m amazed at what they put themselves through and yet they are still fighting and even keeping their sense of humor. They are all inspiring. You just have to be strong for your husband. You’ll cry until you think you’re cried out and then you’ll cry some more but you will get through it! Your husband is young and strong and he wants to fight! Thats what counts. If you can just get the nausea under control so he can eat and not get too weak. That is very important.I’d call tomorrow and get a prescription for Zofran!! God bless. MaryUK Member,
I think the Drs. and we all approach things differently depending on age. My husband has the same Dr. as Kris’ and he wants to hold off on chemo for my husband. He says he doesn’t WANT to affect his quality of life for what may be a few extra months. These Drs. are all about the same age as Kris’ husband and they relate to him more as far as wanting to be more aggressive and prolonging his life. They have young children too, etc. and feel that he is too young to just not do anything. I actually caution my husband about telling them he doesn’t want to do anything that might make him feel bad because they look at him as being “older” at 59 and maybe won’t try more aggressive treatment. He doesn’t want to die, he wants to live to see his grandchildren grow up and he is and has been willing to try anything they suggest up til now. I do believe there may come a time when he will say enough is enough. I don’t want him to be sick all the time and I think there are cases where the chemo really does much more harm than good! He has been very fortunate so far to not have to undergo much chemo. The radiation treatments were hard but not nearly as debilitating and seem to have been very successful. I just hope that he can live as well as your husband did right up to the end. I don’t want to go through the heartbreak of watching him suffer. I really can’t imagine that. Right now I am planning on him being around for a long time. We all have to hope and pray for that! MaryHi Kris,
Is your husband taking Zofran? That seems to be one of the best for nausea. If he becomes dehydrated they will send him to the 9th floor to be given it IV and hydrate him. You may want to ask about that on Fri. We went several times but it didn’t really help. My husband’s problems were from a liver abscess obstructing his bowel. Once that was drained he was better.
Your husband is very young to be going through all of this. We felt we were too but at least our kids are all grown and I’m grateful for that. I’m turning fifty on Thurs and when ever I get teased I just say that I’m grateful for another year. After what we’ve experienced and observed this past year every year is a blessing!
There are a lot of people on this site that were given a very grim prognosis and have beaten the odds. You just have to keep fighting because they are learning more about treating this everyday.My prayers are with you all of you. I hope your husband gets through this initial rough period and tolerates things better this week. Take care. MaryDear Kris,
I can’t tell you how sorry I am to hear your news. I just keep hoping things will turn around for you and your husband and you will get some positive results. I don’t know anything about chemo other than what I read here. I truly hope that it works for your husband.It seems like a lot of people have good results at least as far as shrinkage.We are seeing Dr. Saab too and I feel confident in him. I’m sure he will do everything possible to help your husband.All I can say is don’t let them get you down with their statistics. They never expected my husband to do as well as he has, so they don’t always know. Everyone is different! Just try to stay positive and help your husband to keep up his strength and maintain his immune system. Diet is incredibly important! I practically forced mine to eat even when he really didn’t want to but he is grateful now because he realizes how important it was! Take care! My thoughts and prayers are with you. MaryJean,
Your husband is very lucky to be doing so well. It just shows how difficult this disease is to diagnose and treat. Everyone seems to be so different! My husband’s only problem seems to be with stent infection. He had to have them in earlier because his ducts were blocked but I am hoping that if there is no recurrence of the tumor that they will take the remaining one out and just see if he does alright. We are doing the same as you, just enjoying each day- (although we are stuck in cold Ohio) and being thank-ful he is doing well! Take care and best wishes for continued good health! MaryHello Maggie,
I am very sorry for your loss and for everyone on this site that have lost their loved ones. It seems like it is happening too often.
It is very sad to lose your Mom at such a young age. I think reseaching cancer would be a wonderful thing to do in her memory. She will be very proud of you and everyone on this site will appreciate any insights you can provide to the treatment and cure of this terrible disease. God bless you and comfort you! Marynomich(igan?),
It just dawned on me that that is what nomich is short for?! Hey at least OSU beat Mich- that was the real championship game. Have the Drs. suggested radiation or chemo for your mother? It seems like that is the normal course after surgery. Did Dr Bloomston perform her surgery? My husband was his first patient after being hired at OSU. It seemed like we had our own personal surgeon for a little while. He is very busy now. 2 surgeries in 2 months is a lot. I’m sure your mother needs to build up her strength before any thing else is done. We are all in a hurry to move these treatments along but sometimes a person needs a chance to heal and build up their natural immunity. Best wishes!! Marynomich,
My husband is still being treated at OSU. He had an attempted resection but they were unable to do it. The tumor was in both ducts enough that they couldn’t take the chance of trying to remove it. He underwent IMRT radiation therapy along with Xeloda and then brachytherapy. They can not see his tumor at all now and we did go to Pittsburgh and they said the same thing. I don’t necessarily believe that it is gone but it has responded greatly to the treatments so far. It was the size of a golf ball in June. Any way as far as surgery I don’t know what is best. The Drs. at Pittsburgh and at OSU do not think it should be done because they aren’t sure my husband would make it through it. At this time they feel he is doing very well and they basically told him that a hospital was no place to die and that’s what might happen if they attempted the surgery now.I guess thats a choice your mother has to make but a second opinion is a good idea. I’m glad we went to PA and since they said the same thing as OSU I feel confident in their opinion! Good Luck. MaryRhonda,
My husband has had his bloodwork done the past few days so I compared your husbands to what is normal. Bob’s liver enzymes are high ecspecially the alkaline phosphatse but that can be caused by a lot of different things. The other levels don’t look too far off normal except for the bilirubin. That should be around 1.5 or less. My husbands enzymes are also high and the docs don’t seem too concerned except when the bilirubin goes up. Then he becomes noticeably jaundiced. The crazy thing is that these test results vary wildly fom day to day sometimes. It all depends on what medications you are taking, what you have eaten etc. I suggest you look up liver enzymes on the internet and read as much as you can. You can find out a lot by doing that. Also I get the results of all of his bloodwork and then try to compare them so maybe I can figure out what is causing things to be high. Good luck- I hope this helps a little. Mary
