HealingWell
Search Close Search
☰

I have a very important question.

Support Forums
>
Hepatitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/19/2013 5:02 AM (GMT 0)
Some of you may know my situation. My husband has had hep c since the early 90ies,was on treatments three times to no avail. He was dx with stage four liver cancer with mets to both lungs a year ago in oct. During the course of his treatment he developed HE and was put on Lactulose and xifaxan and a low ammonia diet. This was doing very well until he decided to do it his way! Like taking it only as needed in his eyes. He also has been having chemoembolization on his liver just having the second on last Tuesday. The embolization seems to really hit him hard, harder than his normal chemo. He's extremely fatigued and flu like symptoms. His cancer treatments seem to be going pretty good and has shrunk a very lg. tumor down to 1cm. The tumors in the lungs are almost undetectable, but since the last embolization he's been feeling very ill and a bit strange. Every time for the past week or so when I ask him if he's taking his meds he says nope with a sharp tone in his voice. Today he lied to the dr. about meds and diet. So I asked him whats wrong and he says he's tired of being sick and he doesn't want to fight this anymore. Does this sound like HE again or someone really wanting to give up the fight. Karen
Posted 11/19/2013 5:20 AM (GMT 0)
Hi Aunt Kay,

It sounds like hubby is experiencing HE and the worst thing is to let him do it his way! I would wait until you're sure he is lucid and have a talk with him about the importance of the lactulose. By the time the ammonia has built up, he is too disoriented to realize that he needs more lactulose. If he won't listen to you, have the doctor put the fear into him and let you do the administering of the meds, if that's possible with your schedule. You DO know that he cannot overdose on lactulose (thank God)?

You don't know how many ER visits we made just because of the high ammonia and the resultant HE. Then it gets to a point where they have to use the NG tube for the lactulose, or the rectal method if he is not able to take it orally. It's much more uncomfortable for the patient, though they're the only treatment methods they use to get the ammonia levels down quickly. They generally started out with one 3 doses right away then one per hour until he came around, then tapered off back to normal, but it takes time and always required a hospital stay.

They usually have to restrain folks for these procedures as they become combative.
This should be a deterrent for hubby wanting to do things his way. Hope he's not too stubborn :)
Posted 11/19/2013 6:19 AM (GMT 0)
And then he might just be tired of the battle.
Posted 11/19/2013 5:34 PM (GMT 0)
I agree that you are the one who should dole out the meds, if possible. Make him understand that he will get MUCH sicker if he doesn't take them. He should be having 3-4 bowel movements a day. If not, he's not taking enough Lactulose.

Tell him I was diagnosed in '93 and had a transplant due to left lobe liver cancer in 2011. I'd had it in the rt. lobe 4 yrs. earlier, but eliminated it with chemoembolization and TheraSphere, followed by excision of the rt. lobe. I have had a great many problems every since TP. Now is not the time to give up over meds.

I only had flu-like symptoms for a couple of days following chemoembolization (I had it on the left lobe, also.) Of course, I didn't have mets or other things going on, except for fatigue from Hep C. They will only do chemoembolization every 3 mos.

I hope he will hang in there, esp. with the meds. I know he's tired of it. So am I. But I'm not the type to just give up.

Hugs,
Connie
Posted 12/18/2013 5:09 AM (GMT 0)
Kay

You posted in on Connie's sad news this evening but gave us no update on your end

Last we heard hubby was tired out from his illnesses and the various interventions. Is he holding on? Are you?

Miss hearing from you,

Carol
Posted 12/18/2013 5:43 AM (GMT 0)
We have been at the cancer center quit a bit lately. My hubby had a chemoembolization in November and things got bad. He was feeling so ill and seemed to be going down hill fast. We had numerous trips to the center due to fevers and other symptoms.Despite all our visits he continued to feel worse everyday and was sinking into depression. His oncologist recommended he see the GI dr. so we had a visit with him last week. The GI thought Chuck was suffering from an infection and put him on cipro. Yesterday he had his best day in over a month and today was also a good day.Thank you for asking and this is our life one day at a time. I'm getting by with the help from my drs. and am going for some much needed and over due test on Monday.


Karen
Posted 12/18/2013 6:39 AM (GMT 0)
Thanks for stopping back in Kay. Hope Chuck continues to improve . Yes it is one day at a time for sure.

Sandia
Posted 12/18/2013 12:22 PM (GMT 0)
Karen,

Is hubby not eligible for transplant, or for the new therapy? Or are they waiting for the chemo and the infection to resolve?

Mae
Posted 12/18/2013 12:50 PM (GMT 0)
For some of us it's more difficult to bounce back. It can take a few years of feeling ill to achieve a few days of reward. Hopefully this upward trend sticks but don't count on it. Best to do as you said and look at this as one day at a time. It's great that they have managed to shrink the tumor. My best to your husband.



Ziff
✚ New Topic ✚ Reply