mybdm
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We have talked with a Hospice nurse today who said that because his health is declining so fast she gave him only days to live. He can hardly walk two steps without his legs giving out and many times he is just bearly conscious of anything. We keep praying for either a miraculous recovery or a quick and painless death. He is in God’s hands now. The coming years will be very hard but my children and I will manage somehow. We have many other friends and family members helping us. Thank you all again for your prayers and support.
John Hopkins rejected him too today. They said since his liver was so poor they don’t think any of their treatments and trials would work. I just want to be prepared so I’m making Hopsice and funeral arrangements. At the very least I won’t have any regrets about trying everything we could think of to help him. I just think the cancer was too quick for us to handle.
Thanks for your support. I’ll ask again about stents and bile thinners. His problem is that he doesn’t have just one big tumor, he has many little ones all over his liver. I think most doctors aren’t prepared to deal with this sort of thing, which is why some treatments were automatically ruled out by his oncologist. No radiation, chemoembolization, or Cyberknife; only 5FU, which has had limited effect but seemed to be the only thing keeping the tumors at bay. I don’t know if he’ll ever go back on it.
Well, we do get printouts of the latest tests that show lots of his statistics. His most recent one showed high br, low albumin, low red blood cell count, and normal white blood cell count. His platelets are also a little low. We see doctors at Georgetown University Hospital but I’m starting to doubt their competence with how they are handling this.
We always thought that the higher the br, the worse his liver would be. Now that it’s at 14, I don’t know how to help lower it and I’m very worried that is liver is failing fast. How high can br get before the person dies? The doctors never said he had trouble with blockage and he hasen’t been itching very much. As to his functioning, he has to use a walker and also needs someone standing beside him holding onto him so he doesn’t fall like he did weeks ago and hurt his back.
stacie,
Actually, we are in Annandale, VA. We are looking for options here or in D.C. or in Maryland but are having trouble.
I haven’t told him all of the news about his tests. He thinks he’s just in a rehab period between treatments. I’m afraid telling him the whole story would break his spirit instantly. He’ll want to stop all care and treatment immediately which will obviously accelerate his passing. I feel right now this is the right thing to do because I just know he will react this way.
My husband had bodily tremors before and the doctor said it was because of the buildup of ammonia in his body, which is why he takes lactulose. It may be different in your case but I just wanted to state another possibility.
He has good days and bad days I guess. He uses a walker to help steady himself whem he gets dizzy spells. Even though he takes lactulose his bowel movements are irregular with some days having none at all to some where he has about 2-3 large ones. He has nursing assistants helping him day and night because I’m afraid to leave him unsupervised. He said a few days ago he felt generally ok but recently he says he’s been feeling not so good. I’m sorry I was’nt clear before. I probably shouldn’t have said a “little” tired. He lays in bed for hours on end either watching TV or sleeping. He occasionally moves to his chair nearby to eat or change positions. My son also helps him lift himself out of bed since he hurt his back recenly. He does not have stents because there’s no blockage. I hope this is more helpful.
Has anyone heard of Vitamin C intravenously? Or Glutathione? Or sodium bicarbonate? Just doing some reding and wondering if anyone has had any experience with any of these.
My husband’s doctor has stopped his regular chemo fo 5 FU and leukavorin because they are not working.
Barbara
Hi Alice,
I can relate to your message. The same thing happened to us on Friday while my husband was in the hospital for high ammonia levels and low blood pressure. His doctor does not want to continue chemo. He is now home and taking a strong laxative to reduce the ammonia and hopefully help his confusion. His bilirubin is up to 10 so he does not qualify for any trials. A hospice nurse is coming to assess him early next week.
Barbara
Hi Lisa,
I have also been in touch with Cancer Treatment Centers of America in Chicago. Our current doctor in DC does not give us much hope.
Can you let me know your impressions of Cancer Centers?
Hello,
My name is Barbara, my husband is Frank. His doctor gives him about 2 months. She said that because his bilirubin in 5.7, there are no trials available for him. And because there are too many tumors, radiation, transplant, or any of the other newer methods won’t work. I am not ready to give up. If anyone has any suggestions, please let me know. Thanks.Hello,
My name is Barbara, my husband is Frank. His doctor gives him about 2 months. She said that because his bilirubin in 5.7, there are no trials available for him. And because there are too many tumors, radiation, transplant, or any of the other newer methods won’t work. I am not ready to give up. If anyone has any suggestions, please let me know. Thanks.
