Aa
When is it time to call it quits?
I hope my question finds you all well. It's been a really tough road for my husband the last few months of treatment, and I it's hard to know where to turn.
As a stage 4 (cirrhotic), the stakes are high: shot #44, geno 1, starting VL 17mil, UND at week 13 (was <50 but detectable at week 12.) He's had 2 blood transfusions (one at week 24 and the second at week 42), but has hovered between hemoglobin 8.0 and 10.1 between the transfusions, even on 2 doses of procrit per week and reduced riba (800 mg May through June, 1000 mg since June). He feels less than human most days. Nausea is his constant companion, and brain fog is thicker than a brick. He's lost 6 of his teeth during treatment so far. His ALT/AST have normalized since week 24, but his Alkaline Phos remains high in the 150s, and his platelets are low, in the 50s. He has to make a decision in the coming weeks about whether or not to stop at 48 weeks, and the nurses/docs are not forthcoming with recommendations yet. The only thing the hepa doc has said so far is that he's got a 50% shot at SVR, and extending to 72 weeks might give him a 60% shot. The additional quirk in the works is that his last CT-Scan showed a new finding of 1.5 cm in size (possible HCC, possibly not), but besides referring him for transplant evaluation, nothing can be done there except to wait for another 3 months for repeat imaging. Don't know what to think, I'm just sort of frozen in place, but 48 weeks is right around the corner, and I don't know what to tell my husband if he asks me what he should do...
Both brainiac and non-brainiac feedback would be so appreciated. Could really use some guidance and advice, or just your gut instinct, your thoughts. Thanks.
As a stage 4 (cirrhotic), the stakes are high: shot #44, geno 1, starting VL 17mil, UND at week 13 (was <50 but detectable at week 12.) He's had 2 blood transfusions (one at week 24 and the second at week 42), but has hovered between hemoglobin 8.0 and 10.1 between the transfusions, even on 2 doses of procrit per week and reduced riba (800 mg May through June, 1000 mg since June). He feels less than human most days. Nausea is his constant companion, and brain fog is thicker than a brick. He's lost 6 of his teeth during treatment so far. His ALT/AST have normalized since week 24, but his Alkaline Phos remains high in the 150s, and his platelets are low, in the 50s. He has to make a decision in the coming weeks about whether or not to stop at 48 weeks, and the nurses/docs are not forthcoming with recommendations yet. The only thing the hepa doc has said so far is that he's got a 50% shot at SVR, and extending to 72 weeks might give him a 60% shot. The additional quirk in the works is that his last CT-Scan showed a new finding of 1.5 cm in size (possible HCC, possibly not), but besides referring him for transplant evaluation, nothing can be done there except to wait for another 3 months for repeat imaging. Don't know what to think, I'm just sort of frozen in place, but 48 weeks is right around the corner, and I don't know what to tell my husband if he asks me what he should do...
Both brainiac and non-brainiac feedback would be so appreciated. Could really use some guidance and advice, or just your gut instinct, your thoughts. Thanks.
It's highly unlikely that an AFP reading of 20 is indicative of HCC, especially if this number is not rising rapidly. He's probably OK.
I must tell you however how much I admire you. Your post reflects a very clear headed and determined individual and that's got to help you get through this. Your husband is one lucky guy.
We are all so with you on this one. Keep your chin up and keep us posted throughout his extended treatment. We are really rooting for you. Take care, O.K.?
Robert.
I must tell you however how much I admire you. Your post reflects a very clear headed and determined individual and that's got to help you get through this. Your husband is one lucky guy.
We are all so with you on this one. Keep your chin up and keep us posted throughout his extended treatment. We are really rooting for you. Take care, O.K.?
Robert.
Thanks to everyone for the support and encouragement -- each and every one of you had such great things to say and such wonderful input -- a reality check from people I respect was just what the doctor ordered. It took me a little while to recover from some dark moments this last month, but deep down I know what I'm reading is sage advice. You're such a tough crowd lol... that's probably why I adore you all so.
There's a part of me that misses my husband so much, it feels like I haven't seen the man I married for close to a year now... but despite that, I know I have to buckle down, and I CAN keep my eye on the prize. Now that he has shot #48 behind him, every shot hereafter will hopefully feel like another step towards success rather than just meeting the minimum requirement.
We're due to meet with the hep doc/nurse on Wednesday to get "recommendations," but I think we're not going to hear any better advice than what I read above. Right now, the plan is to trudge ahead and hope for the best -- shots 49-54 are already in the fridge.
The next tough test is really his CT-Scan and AFP in November. The possible scenarios are looming dark overhead, but I'm trying to keep my mind and soul in the sunshine. (Some of you may not know this, but the odds of HCC for my husband isn't the 10% as in the general cirrhotic population -- he had a massive HCC removed in 2007, and since docs told him that chances were greater than 50% for recurrence and death within 5 years, every CT-scan anomaly is high-alarm.) The good news is his AFP is in the mid-20s, so we're hopeful it's not recurrence. (If it is HCC recurrence, there's also some debate whether patients with recurrent HCC are even good candidates for TP, but that's a whole different can of worms that can sit on the shelf for now.)
It's also been a great relief that he's managed to not need another transfusion this month. Every little victory counts, right? :)
Really appreciate the attitude and perspective adjustment.
Looking ahead towards only half of what's already been done... ~eureka
There's a part of me that misses my husband so much, it feels like I haven't seen the man I married for close to a year now... but despite that, I know I have to buckle down, and I CAN keep my eye on the prize. Now that he has shot #48 behind him, every shot hereafter will hopefully feel like another step towards success rather than just meeting the minimum requirement.
We're due to meet with the hep doc/nurse on Wednesday to get "recommendations," but I think we're not going to hear any better advice than what I read above. Right now, the plan is to trudge ahead and hope for the best -- shots 49-54 are already in the fridge.
The next tough test is really his CT-Scan and AFP in November. The possible scenarios are looming dark overhead, but I'm trying to keep my mind and soul in the sunshine. (Some of you may not know this, but the odds of HCC for my husband isn't the 10% as in the general cirrhotic population -- he had a massive HCC removed in 2007, and since docs told him that chances were greater than 50% for recurrence and death within 5 years, every CT-scan anomaly is high-alarm.) The good news is his AFP is in the mid-20s, so we're hopeful it's not recurrence. (If it is HCC recurrence, there's also some debate whether patients with recurrent HCC are even good candidates for TP, but that's a whole different can of worms that can sit on the shelf for now.)
It's also been a great relief that he's managed to not need another transfusion this month. Every little victory counts, right? :)
Really appreciate the attitude and perspective adjustment.
Looking ahead towards only half of what's already been done... ~eureka
Eureka... I'm a wife trying to support my husband along this bumpy road also, I feel your pain as I know you feel your husbands... my penny for what it is worth is to support what ever decision your husband makes... but in my heart I wish him (& you) the strength to continue for as long as he possibly can. The goal is always to try and beat the virus b4 you need to get on the transplant road, breaking the journey down to week by week or day to day is a gr8 strategy... you must do what ever you can to stay on track to the goal... so much good advice from others here ... those that have actually been through the process & I sincerely hope that it helps you both in your journey and with the decisions ahead.
sending you both the very very best wishes ... I'm so glad also that you have reached out here for support, there is no other place where you can find people that realy know what you are both going through.
Love KB
sending you both the very very best wishes ... I'm so glad also that you have reached out here for support, there is no other place where you can find people that realy know what you are both going through.
Love KB
I'm sorry for the difficulties you're both facing right now. You asked for gut instinct among the various options you offered for types of responses and that's what I'm going on here. The more knowledgeable and experienced people such as Bill, Mike, Walrus, Goof, HCA, etc. have thrown in their two cents worth and here's my penny.
Getting through the next 6 months is a shorter duration most likely than going on a waiting list for a liver and as others have said, treatment will still be required just the same. So to continue treatment and potentially avoid a liver transplant AND repeating treatment again would be the way I would definitely go at it.
If it were me, I'd say go for the 72 weeks but approach it like it will be a day at a time - more like a week at a time. Break it up in increments. Set shorter milestones so that you have achievements to celebrate along the way. Look at what might need to change yet again to be able to get through the next months to make it to 72 and make some adjustments.
Important though to decide the 72 weeks but only look a week or so ahead at a time, as if the next goal is one week. Once you're there, another week. I would set short goals like that on a tough run and I would be able to do my whole distance that way. And if I really really had to stop...it was very apparent that I'd done my best and I would stop. Did not happen very very often though, I can tell you, as the next short push was always more do-able than looking at the entire course at one shot. And then I'd realize I was *so* close it made no sense to stop and give up everything I'd done up until then.
Very tough, Eureka. My heart and thoughts are with you both. Again, I am so glad you're here and reaching out. I hope you get what you need.
Trish
Getting through the next 6 months is a shorter duration most likely than going on a waiting list for a liver and as others have said, treatment will still be required just the same. So to continue treatment and potentially avoid a liver transplant AND repeating treatment again would be the way I would definitely go at it.
If it were me, I'd say go for the 72 weeks but approach it like it will be a day at a time - more like a week at a time. Break it up in increments. Set shorter milestones so that you have achievements to celebrate along the way. Look at what might need to change yet again to be able to get through the next months to make it to 72 and make some adjustments.
Important though to decide the 72 weeks but only look a week or so ahead at a time, as if the next goal is one week. Once you're there, another week. I would set short goals like that on a tough run and I would be able to do my whole distance that way. And if I really really had to stop...it was very apparent that I'd done my best and I would stop. Did not happen very very often though, I can tell you, as the next short push was always more do-able than looking at the entire course at one shot. And then I'd realize I was *so* close it made no sense to stop and give up everything I'd done up until then.
Very tough, Eureka. My heart and thoughts are with you both. Again, I am so glad you're here and reaching out. I hope you get what you need.
Trish
You are in my thoughts.Good luck to you and yours on your decision making.You are very special to help him get through all of this.Huggs, Tammy
I am so sorry to hear about the difficulty this must be for you and him both.
My gut feeling echoes the comments by Mike, GoffyDad and Bill. It' really turns on his ability to continue. I did 84 weeks of treatment post TP and didn't suffer as much as he is, but I seriously think I would try to continue as long as possible eith the hope of SVR. The outlook, TP or not, looks so much brighter with the virus behind him. It is a decision that only he can make.
My sincerest compassion and best wishes for you both. - Brent
My gut feeling echoes the comments by Mike, GoffyDad and Bill. It' really turns on his ability to continue. I did 84 weeks of treatment post TP and didn't suffer as much as he is, but I seriously think I would try to continue as long as possible eith the hope of SVR. The outlook, TP or not, looks so much brighter with the virus behind him. It is a decision that only he can make.
My sincerest compassion and best wishes for you both. - Brent
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
