NellW Posted January 28, 2005 Share Posted January 28, 2005 Thanks everyone for all the tips on med distribution. Art and I went to spend the evening with Bob and Jo last night, and took a pill box I found at the big pharmacy near us. It holds a weeks worth of pills with 4 compartments under each day, and since he takes meds 4 times a day it worked well. She will dispense them each time he needs them. Jo and I did the pills in the box for the next week, and then we did one for during the night which he will have near his bed. It was a rough day for them both. He has just added Neurontin and has begun Zometa, and seems very confused and out of it. He is taking 4 300mg of Neurontin per day. Does that seem like it could be the cause of the confusion? He went to bed very early because of the pain. Took a dilaudid and prayed for sleep. Jo is totally overwhelmed and she just started to cry after he went up to bed( she had to help him get there), because his quality of life is so bad. We listened to the tape of his last onc visit on Tuesday with her. They always tape them so we can hear and they can listen again at home if they are confused. The onc sounds very distressed that the pain is not being reduced with all these meds. They have never been told anything like a prognosis since the bone mets. Both feel they want to ask this. I did share with them that many here have outlived the time the doc estimated. Sorry this is so long, I can't sleep with thinking about all they are going through right now and wish there was something we could figure out to relieve this. Doc said not likely that a pain clinic would help, so that was a disappointment, although Bob is so miserable I don't know if he would even go. He is not walking at all of course, so Jo is worried about his muscles wasting. Well, I will go try and sleep. Any input is a blessing. Love and prayers for all Nell Quote Link to comment Share on other sites More sharing options...
kimmek Posted January 28, 2005 Share Posted January 28, 2005 Nell I am so sorry to hear Bob is not doing to well. I am glad you got the pill container, thats exactly the kind i got mom(4 slots a day). Its so convienant. Mom was also put on Neurontin for pain. Nothing else seems to work for her, but this did. I think its more for nerve pain, but seems to work well for some for other kinds of pain. It sure helped mom. Also, according to the doc there is alot of leway in the dosage of this med. They can take alot of mg every day if needed. Mom is on the same amount as Bob though. She will be the first to tell you that pill is what made her start feeling better, so I pray that BOb will see the same results. Please tell Jo and Bob they are in my prayers and hope he finds relief soon. You are a very dear friend, we should all have a Nell in our corner. God Bless you. Kim Quote Link to comment Share on other sites More sharing options...
J.C. Posted January 28, 2005 Share Posted January 28, 2005 Can't help with the pain, buy sending prayers. The pill box is a good idea, it takes away the confusion of when and what. Hoping for the best. J.C. Quote Link to comment Share on other sites More sharing options...
tnmynatt Posted January 28, 2005 Share Posted January 28, 2005 Has there been any discussion of Hospice? My mother keeps trying to get me to talk to them in our situation. They are suppose to be very helpful in getting everything organized, helping relieve the pain, etc. They can be used up to 6 months. They just provide emotional, physical and spiritual help along the way. I had an uncle that "graduated" from Hospice and didn't need them anymore. But, it was a big help for several months for them. Praying for all. Take care. Quote Link to comment Share on other sites More sharing options...
Elaine Posted January 28, 2005 Share Posted January 28, 2005 Nell Good to hear from you, my friend. I take 2400 mg of nuerontin and I have no noticeble side effects. It can be given up to about 3600 a day, I think. I am thinking of upping mine as I am not getting relief. But, as you know all people react differently to medications. I think someone on here said that they got confusion while taking nuerontin. It only really helps nerve pain, which is usually a burning type of pain or sometimes an electrical kind of pain. Hospice can be used for more than six months; the projected prognosis has to be six months or less--but that doesn't mean that a person can't leave hospice care or that if a person lives beyond the six months that hospice care can't continue. IMO, it's just silly what the Dr said about a pain management Dr not being able to help--that is what they are trained to do!!! You all are in my thoughts daily. love and fortitude elaine Quote Link to comment Share on other sites More sharing options...
kimmek Posted January 28, 2005 Share Posted January 28, 2005 Until I read Elaine's post about the pain managment doc I had forgot that that is the kind of doc that mom was referred to for her pain. He is also who put her on the Neurontin. I would double check on that, or just find one on your own unless of course your insurance requires him to be referred to one. God Bless Kim Quote Link to comment Share on other sites More sharing options...
Ry Posted January 28, 2005 Share Posted January 28, 2005 Nell, Please call me or PM me if Jo is considering hospice there is a very good one in the area that is a private non-profit. Hospice would help with his pain relief. Rochelle Quote Link to comment Share on other sites More sharing options...
sharyn Posted January 28, 2005 Share Posted January 28, 2005 I am so sorry to hear he is not feeling well at all. This I am sure is very difficult for his wife and you and your husband to bear witness to.... I will keep him in my prayers. Quote Link to comment Share on other sites More sharing options...
stand4hope Posted January 29, 2005 Share Posted January 29, 2005 Nell, I hope they get this pain issue taken care of ASAP. It's just not right that he has to be in so much pain. You sure are good friends to this couple. Everybody should be so blessed to have friends like you! Love, Peggy Quote Link to comment Share on other sites More sharing options...
NellW Posted January 29, 2005 Author Share Posted January 29, 2005 Thanks friends for the kind words and thoughts and prayers. It has been a rough road lately. Jo will be talking to the onc the end of Feb when they have the next appt. about hospice, unless things get so rough that they go back before that. Right now he is seeing the onc every 3 or 4 weeks because it has been such a hard thing to get this pain under control. Ry, I will PM you since it is pretty late and we just got in. Elaine, I wondered how much Neurontin you were on. It's at least twice as much as Bob, and I am not sure if his pain is the right kind for it, but since Kimme, you said it helped you Mom, well, we are sure hoping. And I agree, it seems just nuts for the doc to think the pain clinic would not help. Maybe we can bring that up again if things do not turn around in the next couple of days. I know Peggy, it doesn't seem as though he should just have to endure this much pain. I guess someone told Jo at church last week that if the met is in the bone, there is no help for the pain, but I know some here have been able to function quite well with bone mets, so I can't give up hope! Dodging the beer truck a little south of you Bec! Love Nell Quote Link to comment Share on other sites More sharing options...
karenl Posted January 29, 2005 Share Posted January 29, 2005 Hi Nell Nothing of value to add, I'm afraid. Just wanted to pass on my best wishes. Karen Quote Link to comment Share on other sites More sharing options...
shadowrose Posted January 29, 2005 Share Posted January 29, 2005 Thanks everyone for all the tips on med distribution.Art and I went to spend the evening with Bob and Jo last night, and took a pill box I found at the big pharmacy near us. It holds a weeks worth of pills with 4 compartments under each day, and since he takes meds 4 times a day it worked well. She will dispense them each time he needs them. Jo and I did the pills in the box for the next week, and then we did one for during the night which he will have near his bed. It was a rough day for them both. He has just added Neurontin and has begun Zometa, and seems very confused and out of it. He is taking 4 300mg of Neurontin per day. Does that seem like it could be the cause of the confusion? He went to bed very early because of the pain. Took a dilaudid and prayed for sleep. Jo is totally overwhelmed and she just started to cry after he went up to bed( she had to help him get there), because his quality of life is so bad. We listened to the tape of his last onc visit on Tuesday with her. They always tape them so we can hear and they can listen again at home if they are confused. The onc sounds very distressed that the pain is not being reduced with all these meds. They have never been told anything like a prognosis since the bone mets. Both feel they want to ask this. I did share with them that many here have outlived the time the doc estimated. Sorry this is so long, I can't sleep with thinking about all they are going through right now and wish there was something we could figure out to relieve this. Doc said not likely that a pain clinic would help, so that was a disappointment, although Bob is so miserable I don't know if he would even go. He is not walking at all of course, so Jo is worried about his muscles wasting. Well, I will go try and sleep. Any input is a blessing. Love and prayers for all Nell HI I take neurontin, so might be able to offer a little input regarding it. Neurontin needs to be started at a VERY low dosage and increased gradually. Mine was started at 100 mgs and upped each week. It is very sedating and it effects the short term memory as well. But, it is good for nerve pain (Mine is for peripheral neuropathy and trigeminal neuralgia) Duragesic pain patches may work better than diludid. They come in various strenthts, and help with a more constant pain control. My duragesic started at 25 and ended up at 100- but they can go higher than that with them. They last 48-72 hours. Diludid metabolizes to the same medication as vicodin. It's just not strong enough for some people. It wasn't for my father when he was dealing with his lung cancer. If mobility is an issue, look into a motorized scooter. I couldn't do without mine. Prayers and best wishes Quote Link to comment Share on other sites More sharing options...
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