Ive heard that news myself a few times It really takes a toll on your outlook and a lot of questions It's positive news they want to refer you to a trial. " they ain't giving up". I think taking some time to get over this and clear your system of the Poison sounds good. If it were me I would definitely take time off the doctor scene except for finding out what all the verdict's are on the condition. very saddened to hear this But you'll get back up I hope something comes your way and for all of us. Thanks for posting this so we can keep you in our prayers.
Bill S
news said
Jan 27, 2013
Just another example of the incredible strength exhibited by this group. I look forward to a report on Tom's next step. For now, just enjoy life.
tomyboy said
Jan 23, 2013
He has had four biopsy's.....he has fibrosis. I will let everyone know how he makes out. Hopefully they will come up with less invasive treatments. We are nervous, but am sure doc will want to know all his symptoms and details as I know they follow incivek treatment users. Thanks for all th
Update, we saw the specialist yesterday and he reports Tom's doctor here made exactly the right decision by taking him off of the treatment. Even if he would of completed the four more weeks of triple therapy, he would of had over 38 weeks on continued treatment and his levels were too low. I went loaded with a wealth of information I had learned here, treatments in the works, trials, and he knew everything I was inquiring about. He doesn't want him to restart the treatment. He has stage 4 cirohsiss which I didn't know. He reports insurance usually won't cover another bout of treatment if first one was unsuccessful. He had his blood drawn and an updated abdomen cat scan. We will get these results shortly, and at least we will know what his viral load is. We are both curious. As of right now, we are waiting for approval for the non-interferon treatment. Hopefully it will be in a year and a half. He suggested to Tom if he would like, he could give his name to his colleages' to possibly do a clinical trial when one becomes available. Tom reported he wasn't interested. so, as of now, we will continue to lurk around the site and comment from time to time. We wish you all so much success in your future treament and hopefully most of you will beat this. Good luck, and thanks for all the support.
Sincerely,
Laura and Tom
tomyboy said
Jan 21, 2013
He has had four biopsy's.....he has fibrosis. I will let everyone know how he makes out. Hopefully they will come up with less invasive treatments. We are nervous, but am sure doc will want to know all his symptoms and details as I know they follow incivek treatment users. Thanks for all the support.
mallani said
Jan 21, 2013
Hi Laura,
Sorry about the failed Rx. Bummer. As hubby is 60 yo, do you know his liver status eg what are his biopsy findings? This will play a big part in decisions about further Rx.
Retreatment with Incivek is probably not an option. Some have been changed to Victrelis as this is less toxic. As low white cells are due to Peg and Riba, he may have to wait for an Interferon-free regime. Good luck.
Cinnamon Girl said
Jan 21, 2013
Hi Laura, good to hear from you again. It`s perfectly understandable that your husband Tom was feeling so down after having to stop tx at that stage. He has really been through a rough time and it`s good to know he`s feeling more positive now and is well on his way to recovery. I should think the best thing now for Tom would be to wait for new drugs to be available, but see what the specialist advises on Tuesday. Other people may have more suggestions to add.
Best of luck, let us know how it goes, and please do feel free to drop by any time you like. ~ Jill
ps- I`m moving this to `General Discussion`
tomyboy said
Jan 20, 2013
Well this is laura back with my husband Tom. Haven't been lurking on the site lately as I didn't want to add any more stress onto my husband. He was on the triple therapy incivek and couldn't complete the treatment after 8 weeks. His level crashed and his doctor here made an appt at Mt Sinai in the city for a follow up of treatment. I don't beleive the specialist will approve Tom to try again but I am hoping there may be something in the works that he may possibly have him try. Or he may tell him to wait for 2014 until something less symptomatic is available. Like I said before, this was his third attempt at treatment and he is a genotype 1. Our appointment is tuesday at 11:00. If anyone has any thoughts or suggestions, or questions maybe I should be asking we truly appreciate it. He has gotten over the deppression and poor me snydrome and is being to feel healthy again. As always, hope everyone's treatment is going successfully. I miss this forum, and must continue to stop by. Thanks all...you are all a wonderful wealth of support and information. Happy new year.
Tom Laura
Ive heard that news myself a few times It really takes a toll on your outlook and a lot of questions It's positive news they want to refer you to a trial. " they ain't giving up". I think taking some time to get over this and clear your system of the Poison sounds good. If it were me I would definitely take time off the doctor scene except for finding out what all the verdict's are on the condition. very saddened to hear this But you'll get back up I hope something comes your way and for all of us. Thanks for posting this so we can keep you in our prayers.
Bill S
Just another example of the incredible strength exhibited by this group. I look forward to a report on Tom's next step. For now, just enjoy life.
He has had four biopsy's.....he has fibrosis. I will let everyone know how he makes out. Hopefully they will come up with less invasive treatments. We are nervous, but am sure doc will want to know all his symptoms and details as I know they follow incivek treatment users. Thanks for all th
Update, we saw the specialist yesterday and he reports Tom's doctor here made exactly the right decision by taking him off of the treatment. Even if he would of completed the four more weeks of triple therapy, he would of had over 38 weeks on continued treatment and his levels were too low. I went loaded with a wealth of information I had learned here, treatments in the works, trials, and he knew everything I was inquiring about. He doesn't want him to restart the treatment. He has stage 4 cirohsiss which I didn't know. He reports insurance usually won't cover another bout of treatment if first one was unsuccessful. He had his blood drawn and an updated abdomen cat scan. We will get these results shortly, and at least we will know what his viral load is. We are both curious. As of right now, we are waiting for approval for the non-interferon treatment. Hopefully it will be in a year and a half. He suggested to Tom if he would like, he could give his name to his colleages' to possibly do a clinical trial when one becomes available. Tom reported he wasn't interested. so, as of now, we will continue to lurk around the site and comment from time to time. We wish you all so much success in your future treament and hopefully most of you will beat this. Good luck, and thanks for all the support.
Sincerely,
Laura and Tom
He has had four biopsy's.....he has fibrosis. I will let everyone know how he makes out. Hopefully they will come up with less invasive treatments. We are nervous, but am sure doc will want to know all his symptoms and details as I know they follow incivek treatment users. Thanks for all the support.
Hi Laura,
Sorry about the failed Rx. Bummer. As hubby is 60 yo, do you know his liver status eg what are his biopsy findings? This will play a big part in decisions about further Rx.
Retreatment with Incivek is probably not an option. Some have been changed to Victrelis as this is less toxic. As low white cells are due to Peg and Riba, he may have to wait for an Interferon-free regime. Good luck.
Hi Laura, good to hear from you again. It`s perfectly understandable that your husband Tom was feeling so down after having to stop tx at that stage. He has really been through a rough time and it`s good to know he`s feeling more positive now and is well on his way to recovery. I should think the best thing now for Tom would be to wait for new drugs to be available, but see what the specialist advises on Tuesday. Other people may have more suggestions to add.
Best of luck, let us know how it goes, and please do feel free to drop by any time you like.
~ Jill
ps- I`m moving this to `General Discussion`
Well this is laura back with my husband Tom. Haven't been lurking on the site lately as I didn't want to add any more stress onto my husband. He was on the triple therapy incivek and couldn't complete the treatment after 8 weeks. His level crashed and his doctor here made an appt at Mt Sinai in the city for a follow up of treatment. I don't beleive the specialist will approve Tom to try again but I am hoping there may be something in the works that he may possibly have him try. Or he may tell him to wait for 2014 until something less symptomatic is available. Like I said before, this was his third attempt at treatment and he is a genotype 1. Our appointment is tuesday at 11:00. If anyone has any thoughts or suggestions, or questions maybe I should be asking we truly appreciate it. He has gotten over the deppression and poor me snydrome and is being to feel healthy again. As always, hope everyone's treatment is going successfully. I miss this forum, and must continue to stop by. Thanks all...you are all a wonderful wealth of support and information. Happy new year.