marylloyd
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Pam,
My husband has had external drains early in his treatment and yes they are a pain at times but if necessary they can be managed without much trouble. At least you don’t have to deal with the stent blockages. I think there are several people on this site who have them. I know David Cook does. I have also talked to people who have had them for years and seem to be doing just fine. There is always a chance of infection complications with them too but they will allow your husbands’ liver to drain properly and may help him feel a lot better. Best wishes. MaryCharlene,
Everybody above is totally right. You need to apply for Sos. Sec Disability, not SSI. It can be done over the phone by contacting the closest Soc. Sec office in your area. It has nothing to do with your state. It is a federal program. Also please check with the hospitals etc. They right off debts and give help to people making a substantial amount of income and if you are on disability too you should qualify. I went through a great deal when my husband was first diagnosed because he wasn’t adequately covered by insurance but we have been able to get things taken care of. It required a lot of time on the phone and a lot of duplicate paperwork but I’m very grateful we were able to do it. I still have debts but we have just made arrangements to pay as we can. Remember hospitals can’t charge interest on their debts so you sre better off working out a payment schedule with them than taking out a loan. Good luck. I teally hope you find some help out there. MaryCharlene,
You need to check with the facilities where your husband is receiving his treatments and the pharmaceutical companies. Roche Pharmaceuticals gave us my husband’s Xeloda completely free because we qualified for their program. The unfortunate part is that you have a job and insurance. That actually hurts you when applying for assistance because the system can’t comprehend the fact that you are struggling financially. Because we were self employed and did not receive an actual paycheck we were able to get help. THe biggest injustice in all of this is that most medical bankruptcies are filed by people with insurance. I personally have a $5000 deductible plan so I never go to the Doc if I can help it. I can’t afford to pay for my pemium and office visits, tests etc. Luckily Tom is on disability. Our Doctors and people at the hospital were great at helping us get help with his bills. Fortunately he is only being scanned at present and not racking up a lot of drug bills etc. I hope you can find some help. We shouldn’t have to worry about our finances at the same time we are dealing with a loved ones devastating illness. Take care and best wishes. Mary
Healthcare is a right not a priviledge.Hi Chris,
Your Mom’s tumor sounds exactly like my husbands. A klatskin that had spread from the bifurcation into both ducts.They attempted surgery but felt they could not remove as much duct as would have been necessary for clear margins. He was diagnosed in June ’06. He underwent 5 weeks of IMRT radiation therapy along with Xeloda followed by brachytherapy directly on the tumor. He has not had any treatment for a year now. His tumor is gone and has not recurred at all. There was some scar tissue which is visible but we have gotten scans at 2 different wonderful hospitals and they both agree that the tumor is gone. He is taking many different supplements and watching his diet etc which I have outlined in my introduction. I really believe all of it helps greatly. The problem that we were told about radio-frequency ablation and some other treatments is that they may cause the duct to perforate and then you would be in serious trouble. Be sure to get a second opinion about the surgery. Her tumor is a little bigger than my husbands was but they were very optimistic that they could remove it until they actually opened him up. They really can’t tell sometimes until that point. Take care and best wishes. MaryCeloi,
I’m glad your Dad is home. I pray he will continue to improve and get his strength back. Take care. MaryDear cksvelasco,
My husband has a plastic stent. We won’t let them put in a metal one at this time. It does not seem necessary since he does not have any tumor growth. The stent is mainly to keep his duct open because of scar tissue from his radiation treatments. He goes every 2-3 months to have it changed and does fine. My fear is the same as yours- what do they do if the metal one clogs? In time he may need a metal one if the tumor is in danger of closing off the duct . Good luck and best wishes for your Dad and your family. Take care. MaryJeff,
He is feeling better than last week but not because of the stent replacement. We left home at 5 AM today for our 2 1/2 hour drive. He asked whether I wanted to drive or him and since I knew I would have to drive home and he would get a nice nap at the hospital I told him to, at least for awhile. I almost leaned over to look at the gas gauge before we left but instead laid my seat back for a little snooze. About one hour down the road he started pulling over and had a little outburst of mild profanities. Here he had meant to get gas a few miles from home but completely zoned out!! We were listening to a Dean Koontz audio book and he just never thought about gas again until it was too late! Needless to say by time we were able to get help to us it was too late to make it in time so he’s rescheduled for Weds. I’m driving!! Got to have a sense of humor!
Thanks for asking Jeff. I’m sure things will be fine. I think his stent has unclogged a little because he isn’t as jaundiced.These things are a pain to deal with but I guess a necessary evil. I hope things continue to go well with you. Take care. MaryThanks Celoi. I hope your Dad is better soon. I think maybe your Dad and my husband have a lot in common as far as diagnosis etc. I hate to see your Dad having problems. My husband had an abcess and very seious infection a year ago that had to be drained and it was very difficult. What caused your Dad’s problems? Was it from his external drain? Take care and best wishes for your Dad’s quick recovery. Mary
Dear Charlene,
I feel so badly for you to have to make such a difficult decision. Your daughter obviously feels the need to have you experience the joy of your grandchild’s birth but I personally would not be able to leave my husband alone. I know how much my husband needed me to be there for him (and still does) when he was so sick . I wouldn’t have trusted anyone else to look after him and he really wouldn’t have wanted anyone else, even though he may have said it was okay. You have to make the decision but since you did ask I guess I would say your husband needs you the most. Hopefully you can both see your grandchild together soon. It may give him a reason to fight even harder. I know my husband’s greatest regret originally was that he wouldn’t see his grandkids grow up but now he’s determined that he will! Take care. MaryJules,
I’m very sorry for your loss. Your Dad was a great inspiration to all of us and we appreciate you sharing your experiences here. I hope time will help heal your heart and you can eventually find your way ahead. I believe in angels and I am sure sure your Dad remains by your side, helping you in anyway he can. Take care and god bless. MaryCeloi,
I”m sure your Dad will be fine, he’s a fighter and these stent problems happen. My husband has gone through the fever and shakes too and it is very scary. They always seem to get the antibiotics in him and get him over it so I hope they are doing the same for your Dad. Keep us posted. Our prayers are with your Dad and your family. Take care. MaryDear Lovemom,
I’m so sorry you are going through all of this. I personally don’t know much about Dr. Kennedy but have read about other people who have been treated by him. I really think you are doing the right thing to go there. I really understand all of your pain and the problems your mother is going through. My husband had external drains with leakage and discomfort and he also is a new grandpa. The one thing he was most upset about was the fact he would not get to see his grandkids grow up. But he is doing very well now after months of dealing with treatments, abcesses, stent problems etc. I agree with not putting in the metal stent. We won’t agree to it either. What I don’t understand is why they say the plastic one can’t be replaced. Has the tumor grown so big that it is not possible to place another stent? My husband had that happen originally but after his radiation and chemo treatments thay had no problem whatsoever. They were actually all shocked at how easy it was and remains so.He has his changed every three months. I hope you will have success at Wake Radiology. I would go ther as soon as possible. As for the drains and stents I really don’t know. We go to OSU in Columbus Ohio. They have a brand new endoscopy departmenrt that is one of the best in the country.We have had very good treatment there. Best wishes and don’t lose hope. Things will get better! Take care. MaryKatia,
Yes my husband did have surgery to try and remove the tumor. They really thought they could but found the tumor to be creeping into his right duct too much. It would have been life threatening for them to remove that much duct. The interesting thing was that they tied off the portal vein to his left lobe and then left it tied off. His entire left lobe that was not all ready necrotic died and dissolved into his body so he only has the right lobe left. I wonder if that helped make his treatment more successful because they managed to cut the blood supply off to the tumor. He did have the brachytherapy at the Jamed Cancer Center also.Brachtherapy entails putting wires through abdominal catheters directly into the tumor site in the ducts and then sending radiation directly onto the tumor. It was not a pleasant experience with all of the tubes and wires etc but it was obviuosly very effective and only took three days of being in the hospital. He has one stent in his right duct which they change every three months. We won’t agree to a metal stent because they can cause too many problems and are permanent! Nothing can really be done if they clog. His stents did not create any problems with the treatment. Dealing with the stent is his only problem right now and as long as he gets it changed in time he really doesn’t have any difficulties other than a little infection occasionally. Let me know if I can be of any more help. I’m glad I can answer your questions. Take care and best wishes for your Dad and your family. MaryYes my husband’s tumor was unresectable. They tried but there was too much growth into the right duct to be able to take out the tumor and have clear margins. At this point I think he is better off with the way things are since he is doing so well. Yes Xeloda is an oral form of 5FU. He did not have the davanat. As far as staging we never really asked and they have never said but there was no lymph node involvement or mets to the liver etc. Everything still looks clear. He was treated at OSU, the James Cancer Center in Columbus Ohio. We also went to the Univ. of Pittsburgh after his treatments were over to basically get a second opinion. They took their own cat scan and confirmed that the tumor was indeed gone.They were very surprised because they assumed OSU’s scans simply weren’t showing up as well and they had more confidence in their own. We were happy to have both outstanding hospitals agree and feel that his tumor is dead. They all seem to think it will be back but hopefuuly not.Feel free to ask any questions. I think you should definitely go to Dr. Kennedy if possible. Radiation has not been given much as a treatment for this cancer but I personally think that is a mistake. It did not cause any real side effects. Like our radiologist said, a little scar tissue is better than cancer!!
My husbamd had 5 weeks of external radiation(IMRT) followed by 3 doses of brachytherapy. He took Xeloda along with the radiation.He had VERY good results, the tumor has been gone for over a year now with no mets. The only thing they can see on his MRI is scar tissue where the cancer used to be. He had a klatskin tumor. I highly recommend that course of treatment. It won’t wipe out your immune system like heavy doses of chemo does. Best wishes. Mary
