I'm glad that Joe is UND. I know it is hard seeing the pain that our loved ones go through. I hope you're able to take care of yourself as you help Joe out. I'm a social worker (although unemployed currently) and in school to become a minister, and the big mantra in both fields is that we cannot take care of others without taking care of ourselves first. It sounds like you have some exciting things coming up to look forward to, but the day to day self care is important too. Hang in there!
Lindsay
Cinnamon Girl said
Mar 23, 2012
Hi Pam, good to hear from you and read your update. Goodness, you`ve been going through a really rough time, and it sounds like Joe`s struggling with some pretty severe sx. I`m glad to hear his doctors are closely monitoring his progress.
Yes it`s great news that he`s had an `undetected` result, that must have given both of you a very welcome boost. Congrats to Joe! And congrats to you too for going through this with him!
So he can`t have many more weeks left on Incivek now? It should probably start getting easier once he`s finished with that, and let`s hope his docs can keep on top of those sx until then. I`m sure it will be a relief for him when he no longer has to eat all that fat!
It must be comforting to know that he hasn`t got to worry about his work situation, that must take a lot of stress off you both. And it`s good to hear you`re keeping your own activities going Pam, getting out and about with friends and family is so important for your own well-being. Two grandchildren, and a wedding to look forward to, how fantastic!
All the best of luck to you both, keep in touch and let us know how it goes.
Hugs, Jill xx
-- Edited by Cinnamon Girl on Saturday 24th of March 2012 08:17:13 AM
JoesOtherHalf said
Mar 23, 2012
We have gone through a lot over the past months, he is on the meds that Lindsey mentioned. He is also having serious blood issues- he can no longer work, on short term disability- his blood levels got dangerously low, so he had a transfusion. That made a big difference for about a week+, so I think we will see that happen again. He is on procrit & other things for his blood issues. He has a bad rash over 80% of his body. We and the doctors are doing all sorts of things for him. He has gained a lot of weight, with the "20 grams of fat" every eight hours- I am more worried about his cardiac health than anything, but nothing can be done about that- he has NO energy at all.
For the first time- he did test negative for the disease- so that is good news, he is responding to "it all".
I am doing fine- busy with a lot of community activities and family. That pic is my second grandchild- we have a wedding this summer- my youngest is getting married in June!
Joe is very lucky, he works for a large corporation that allows his wonderful benefits to take over for him. He will get through this.
Cinnamon Girl said
Feb 4, 2012
Hi Pam and welcome! Well done to you for joining this forum - I hope we can be a help and support to you as you go through tx with Joe. It is all quite confusing at first, there`s so much to learn and take in, and not knowing what to expect can be stressful in itself.
The sx do vary quite a lot from person to person and also throughout tx, so it`s difficult for anyone to predict what it`s going to be like. Many people do find it gets easier once their bodies have got used to the drugs and adjusted their lifestyle though. And once he`s finished the Incivek it should be less hard going too, although that might not be much consolation at this point!
The reason some people are doing tx again is because they were `non-responders` previously with the standard double combo of Interferon and Ribavirin, before the more effective triple tx options were available for those with Gen 1a or 1b. As Lindsay said, these are new drugs, but the results we`re seeing so far from people currently on them are looking very promising.
Has Joe been given any reason for the 48 week regime? It`s probably a good idea for him to talk to his medical team about anything he`s worried or concerned about.
All the very best of luck to you both, and as Linday said, do find time to look after yourself too!
Keep reading and asking questions - we have a lot of knowledgeable people here who are happy to help.
Love from Jill xx
ps - What a beautiful litttle baby - congrats to you both!
-- Edited by Cinnamon Girl on Saturday 4th of February 2012 12:41:13 PM
Lindsay said
Feb 2, 2012
I'm glad Joe is able to work from home. What meds are Joe on? If he's on Incivek, riba, and peginterferon, treatment length is based on treatment response. I think Victrelus is the same thing too. With just the riba/peg, treatment typically is a full year. The meds are not really a cure for everyone, unfortunately. Both Incivek and Victrelus only came out this year I believe, and while they have higher success rates, not everyone responds the same.
As the fiancee of someone on treatment, make sure to take time for yourself.....it'll go a long way in helping you help Joe. Take care!
JoesOtherHalf said
Feb 1, 2012
Joe has had 2.5 weeks of treatment, the second week, the day after his shot was tougher, more tiredness, etc. - does your body get used to this?, or is this cumlative, making it harder each week.
We are also a little confused- he was told this is a 6 month regime, but when he got the written schedule it was for 48 weeks?? This program was "sold" to us as a "cure" for Hep C....but then I read some of you have to go through this more than once.
So far, he is great about watching his own med schedule, he has done a lot of reading and research. The bathroom issues keep him from wanting to leave the house. His employer lets him work from home now, thank goodness.
I'm glad that Joe is UND. I know it is hard seeing the pain that our loved ones go through. I hope you're able to take care of yourself as you help Joe out. I'm a social worker (although unemployed currently) and in school to become a minister, and the big mantra in both fields is that we cannot take care of others without taking care of ourselves first. It sounds like you have some exciting things coming up to look forward to, but the day to day self care is important too. Hang in there!
Lindsay
Hi Pam, good to hear from you and read your update. Goodness, you`ve been going through a really rough time, and it sounds like Joe`s struggling with some pretty severe sx. I`m glad to hear his doctors are closely monitoring his progress.
Yes it`s great news that he`s had an `undetected` result, that must have given both of you a very welcome boost. Congrats to Joe!
And congrats to you too for going through this with him! 
So he can`t have many more weeks left on Incivek now? It should probably start getting easier once he`s finished with that, and let`s hope his docs can keep on top of those sx until then. I`m sure it will be a relief for him when he no longer has to eat all that fat!
It must be comforting to know that he hasn`t got to worry about his work situation, that must take a lot of stress off you both. And it`s good to hear you`re keeping your own activities going Pam, getting out and about with friends and family is so important for your own well-being. Two grandchildren, and a wedding to look forward to, how fantastic!
All the best of luck to you both, keep in touch and let us know how it goes.
Hugs, Jill xx
-- Edited by Cinnamon Girl on Saturday 24th of March 2012 08:17:13 AM
For the first time- he did test negative for the disease- so that is good news, he is responding to "it all".
I am doing fine- busy with a lot of community activities and family. That pic is my second grandchild- we have a wedding this summer- my youngest is getting married in June!
Joe is very lucky, he works for a large corporation that allows his wonderful benefits to take over for him. He will get through this.
Hi Pam and welcome!
Well done to you for joining this forum - I hope we can be a help and support to you as you go through tx with Joe. It is all quite confusing at first, there`s so much to learn and take in, and not knowing what to expect can be stressful in itself.
The sx do vary quite a lot from person to person and also throughout tx, so it`s difficult for anyone to predict what it`s going to be like. Many people do find it gets easier once their bodies have got used to the drugs and adjusted their lifestyle though. And once he`s finished the Incivek it should be less hard going too, although that might not be much consolation at this point!
The reason some people are doing tx again is because they were `non-responders` previously with the standard double combo of Interferon and Ribavirin, before the more effective triple tx options were available for those with Gen 1a or 1b. As Lindsay said, these are new drugs, but the results we`re seeing so far from people currently on them are looking very promising.
Has Joe been given any reason for the 48 week regime? It`s probably a good idea for him to talk to his medical team about anything he`s worried or concerned about.
All the very best of luck to you both, and as Linday said, do find time to look after yourself too!
Keep reading and asking questions - we have a lot of knowledgeable people here who are happy to help.
Love from Jill xx
ps - What a beautiful litttle baby - congrats to you both!
-- Edited by Cinnamon Girl on Saturday 4th of February 2012 12:41:13 PM
As the fiancee of someone on treatment, make sure to take time for yourself.....it'll go a long way in helping you help Joe. Take care!
Joe has had 2.5 weeks of treatment, the second week, the day after his shot was tougher, more tiredness, etc. - does your body get used to this?, or is this cumlative, making it harder each week.
We are also a little confused- he was told this is a 6 month regime, but when he got the written schedule it was for 48 weeks?? This program was "sold" to us as a "cure" for Hep C....but then I read some of you have to go through this more than once.
So far, he is great about watching his own med schedule, he has done a lot of reading and research. The bathroom issues keep him from wanting to leave the house. His employer lets him work from home now, thank goodness.