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.
Sorry to read this about your husband. It's a shame that the doctors and nurses are not forthcoming with some recommendations to your husband. I know how hard it can be for some on treatment and I know of people who do stop because the sides are so severe. Not only is it hard for your husband it must be hard for you also. Can you ask your husbands medical team what they would do in his situation or perhaps can you see a hepatologist privately and get an opinion from him.
I am sorry that this has happened to you and I wish you all the best.
I am so sorry to hear about the tough times y'all are going through. I remember y'all starting tx.
If I've learned 1 thing throughout my 48 weeks, it was this....waiting is the hardest part. Our decisions are always based on information we are waiting for that never seems to come fast enough.
I'm not sure that pulling someone aside to get info will help. (but you can try) Sometimes they just don't know the best answer for us, for our circumstances.
You've been on the forum enough to know that so much is unknown....maybe that's why they are not giving you answers. The answer you said above was 50% SVR now and 60% going to 72 weeks. Maybe that was their answer. What are your thoughts on those odds, and what are his?
Will he be able to be evaluated by the transplant team before the 48 weeks are up? Maybe that can be the goal to look towards...getting that eval in and then deciding whether to extend to 72,
Obviously I'm not offering medical advice, just some options as a tx'er that wishes y'all well.
Hopefully some of the extenders and TP people will come soon.
At stage 4, and with all the other stuff you mentioned, he needs to get hcv-free. Even if a transplant is in the future, and he does not eliminate hcv, he will face treatment anyway. Plus (referring back to mikesimon's situation) treating post-transplant is a very tricky and tenuous proposition and also requires a lifetime of continuing attention. To me, preserving the original equipment is optimal. I could not guess what might be the right number of weeks if he decided to extend but he has at least a couple of negative factors going against him.
I realize that both he and you are probably in a miserable place right now, and that's regretable. But, he has been undetected for about 9 months and all the misery to this point would be a terrible thing to waste knowing that if he relapsed there would certainly be much more misery to come. Let's say he did continue for another few months, insuring more misery and the increased possibility of svr (not sure even if that's true) the risk/reward could be a significant payoff. I guess what I'm saying is that if he is sort of tolerating the carp now maybe he and you have an appetitie to suffer a little more and roll the dice for the bigger payoff. When it comes down to the nubs, you really don't have many choices.
I'm sorry too to hear about all the problems your husband is having and the stress you must also be going through when someone you love is so ill.
I'm also a Stage 4 and on week 37 of elevated doses (270 mcg Peg/1200 Copeg) plus Procrit (one shot each week) and shooting for 72 weeks. My 12 week PCR was UND but even with that good news plus the Stage 4 dx, will I tolerate the sx to 72 weeks? I am giving it my best shot, but I don't honestly know. At this point, it seems a new sx crops up each day and you just get tired...over and above the fatigue, you know?
It such a personal decision, but if at all possible, I hope he can stick it out as long as he can and the Drs. recommend. When the going gets tough for me, I have to focus only on the day at hand ( and sometime minute to minute) and getting through it. If I look any further ahead, I'm overwhelmed. Baby steps.......There may come a time when even that is too much, but for now it's one day at a time.
Thinking of you and hoping for better days ahead.......Pam
They can shrink the growth, or stop it from getting bigger, I think you should look into that a bit more thoroughly, because when it gets to 5cm he wont be eligible for a transplant if he needs it.
In regards to the treatment I guess ultimately it is your husbands decision if he can handle it anymore.
If it was me, I would be visiting a Dr Berkson who has been successful in reversing cirrhosis with intravenous supplement injections. There is a thread here by Muhdnall which talks about it, or you can google the Dr Berkson Protocol to find the information.
Your doing great with your support for your husband, talk things through with him and support any decision he makes.
You can also get a second opinion if you arent happy with the medical team he has at this time.
Good luck with everything and I wish you both all the best.
Well, I'm clearly from the non-brainiac camp but my "gut" would be to continue treating beyond the 48 weeks.
Losing teeth and nausea are terrible but it is his life we're talking about here. Isn't that worth the additional temporary misery?
Further, whether his chances of SVR increase by 10% by extending treatment (or 8% or 12% - it amazes me that these numbers keep changing), they do increase.
Pressing your doctors for more specific guidance is worth a try but as someone previously mentioned, there's so much about treatment that they honestly just don't know. We must ultimately make the decisions.
I am so sorry you and your husband have to go through this. I truly wish you all my best. Take care.
It's not really a 24 week decision-it's a 12 week decision.
How so ?
'Cos if he quits at 48 it will take 12 weeks to start to feel human again,whilst simultaneously worrying about relapse and generally feeling guilty about quitting.
If he relapses after 72 weeks treatment then no regrets.
If he relapses after 48-wailing and remorse!
There is no clinical reason to quit-certainly not platelets!
The lesion on the liver is probably a haemangioma.
As far as percentages go there are only two-50/50,you either clear or you don't.
I basically agree with HCA - I would try to continue and I would take it one day at a time. I try never to look too far down the road - the long road seems overwhelmingly hard but we can almost always get through the day...and the days turn into weeks and so on.
I don't see why continuing to treat and getting evaluated by a transplant center are mutually exclusive. I would treat, if I could, and get evaluated as well - for 2 reasons:
1) You get acquainted and become familiar with the transplant center/personnel and they with you.
2) Transplant centers generally have top notch hepatologists who probably treat more cirrhotic patients than do non-transplant hepatologists. They also likely see more lesions than most hepatologists and there are transplant surgeons available if any surgery is deemed appropriate - resection etc.
I think I have an idea of how hard it is for your Husband right now but I agree with FlGuy - it probably won't get any easier. Even if he undergoes transplant, treatment will probably be in his future at some point. And if the PIs are available, they will still be administered with interferon and ribavirin. So, while the odds of SVR will be better, the treatment will still be extremely difficult.
Alk phosphatase usually indicates bile duct blockage. The treatment should not be making that worse, it's due to the liver damage. It will take time to repair if he achieves SVR. He cleared at 13 wks. which is pretty good. 12 would be a little better, but 13 is good. The normalized ALT/AST are a big deal. They mean that nothing is beating on the liver, or has been since week 24.
Even after cirrhotics clear they must still be evaluated for HCC every 6 mos. I don't take the development of the mass to be directly related to HCV; instead it's related to just being stage 4.
It's common for cirrhotics to have low platelets (caused by many factors, one being that the damaged liver is unable to produce a certain chemical that stimulate platelet production). And of course the interferon trashes platelet production also. He will likely return to his pre-treatment platelet level after stopping the interferon. At 13 weeks post TX (I'm stage 4 also), mine are only at 111,000 and increasing at only 1000 per month. It just takes time for liver repair to happen.
The 50% odds are the standard odds for geno 1 patients. The odds go up a lot for people who clear particularly early, but your husband is in the 'ordinary' range so his odds are just the regular odds. A recent study presented that extension of TX only has a fraction higher increase in the odds of SVR. You are stuck in a coin toss. I wish any of us could provide some great insights for you but I don't think anybody can. Good luck.
My suggestion would be to complete the 48 with an eye toward continuing as long as he can handle it, taking one week at a time. I think it will become a lot easier when it's not looking like a 72 week sentence but rather "Can I keep going a little while longer, or do I need to stop now."
I am providing a strictly non-brainiac opinion here. I'm just a guy who has treated twice; once was 6 1/2 years ago and the last was basically now (would have been at week 40).
I am so grateful to my docs for their openness while I was treating. I had a transfusion at week 10 and they took me off at week 36 due to interferon related acute pancreatitis. The good news is that I was still UND 3-weeks after stopping.
The thing that experienced docs do while treating a patient is to do their best to balance treating a patient with a regimine that is designed to kill the HCV but without killing the patient.
That sounds scary but it is the straight up truth. That is why the docs follow the patient's side effects and progress closely....very closely.
There can come a point during treatment when treating becomes countertherapeutic. That is the point at which a doc will take the patient off treatment due to the treatment creating a serious health risk (more than just having side effects because of the meds).
My opinion is that if a doc doesn't follow a patient and their symptoms, taking the symptoms very seriously throughout, then one should find a more competent doc. Additionally, if a doc is not primarily involved in a patient's decision to either continue or stop treatment then I see a red flag as well. The doc MUST give the patient the FACTS and varying option.
Eureka-- I just saw this and hope you know you have my very very good wishes!
I would extend and do everything in my power af stage 4 to get UND. I know how hard it is 72 weeks...but I would go full steam ahead if I were able...
I saw this when you first posted last night, but wanted to think for a while before responding.
Yeah; extend for as long as is humanly tolerable, and doctors allow. I don’t know how to define that term; but I’m sure your husband will. If he's at that point now; that's OK.
HCA hit it on the nose; self recrimination can be a b!tch… suffering through rotten treatment now might be nothing compared to what he might inflict upon himself should he relapse. Given his advanced stage of damage, I’m sure he’ll want to know he’s done everything possible to avoid the pick ‘n pull option. And as mentioned above, if he fails now, he’ll still have to deal with it again after transplant; when he may not tolerate even 800 mg/day riba.
Push his doctors for a written analysis; maybe they can draw an algorithm or chart so he can get a visual perspective of his choices; no immediate hurry, but it’s a good idea to begin the decision process.
He’s so very lucky to have you in his corner helping weigh all this out; it can be a real bear trying to deal with critical thought when we’re ill like this.
All my best to both of you; I sure hope something shows soon—
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
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.
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.
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
u r such a gd wife,he is very lucky,i am glad to c he has decided to push along week by week,my gut instinct is to go as far as docs will let him.
lots of gd advice already given so i will just give u a non brainiac oppinion,which is to stay on tx as long as possible,his alt ast look good so id keep on going if his health will let him,all in all tx has been gd for him since his liver is gettin a rest and repairing,so whats a few more weeks,iv seen it b4 when people go on tx and relapse and try again for longer and get there svr.
he has made the right decision.
good luck to u both,u r a gem.
At stage 4 myself and having had TX fail me, I would say that given the hope of attaining UND should be something to grab ahold off. For myself who began at 90mill VL and were unable to get below the million point mark, despite 10 months of TX, to attain UND would have been a blessing to see 7, 8, 9, 10 months into TX.
Firdt, I'm not a brainiac, but I did some reading on the AFP.
I'm sorry if this question has already beena sked and answered, I get so impulsive, I don't read every word of every post when there's 20+ ahead of me...
Anyhow, have you heard of the AFP-L3% test?
"The AFP-L3% test is a new test that compares the amount of total AFP to the amount of AFP-L3. An increase in the percentage of L3 to total AFP is associated with increased risk of developing hepatocellular carcinoma in the near future"
Could your dr's monitor his risk through this test? I wish you and your husband all the best, as does everyone on this forum.
GO: Good to see you here. I'm not on a lot, but I was reading old posts and was reminded what a prescence you have been. How are you doing these days?
I'm another non-brainiac, but wanted to let you know that during tx my alk phos rose up to 130 (it was 80 pre tx). I was 'very early cirrhosis'; platelets were still within normal range but lowering at each six month test, and I had bridging fibroses, thickened pancreas head, enlarged spleen and portal vein.
I only did 6 months (G3), and, after achieving SVR, my specialist said they had been worried about HCC or biliary obstruction (alk phos), but didn't want to 'worry me during tx'. I have just received the results of a scan 10 months after tx: spleen and portal vein are now normal, and pancreas thickening "has resolved", plus no obvious mass or biliary obstruction. My alk phos went back down to its own normal (upper range of normal) within 6 months post tests, and I will test again soon.
I've had it easy compared to your husband (I lost my teeth years ago and found it to be a blessing - I must be one of the few who loves having dentures lol!!), and, although I treated twice, it was only for six months both times.
My point is that I know the specialists were very much wanting me to not worry about anything except the concentration and effort I was putting into gaining SVR; that anything else they would 'deal with' after I gave it my best shot. I even tried to extent, but dreaded them allowing me to (they didn't). I hope you can keep your long-term option open for tx'g for as long as it takes, and then you can take it week by week (or moon by moon like me!), knowing that, if necessary, you can just stop at any time (which was my ultimate psychological trickery that helped me carry on day by day).
I am also blown away by what damage the HVC was doing, not only to my liver, but to my other organs, and more amazed by how quickly there has been improvement. I think SVR is the prize to aim for, if at all possible. And while Stage 4 may not heal with such speed, it would not worsen, which is so very frightening.
My prayers go to you both - you're doing a fantastic job!!
Thanks for asking, I've been doing alright I guess. Annual tests continue to reflect that my liver appears to still be compensating, which is a good thing I guess.
I've been staying involved with local liver support group and a Liver Lecture series my NP started about a year ago to help those with liver damage learn more, and share, about different aspects of how to deal with the damage to their livers as well as what one might expect to encounter down the road should damage worsen.
Also involved with various other support groups in various ways and as of February joining the masses in search for employement, which so far has been less promising than my health ;-)
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 way I tried to look at it was this - as closely as I could figure it out when I was trying to decide was instead of a half chance at relapse it brings it down closer to only a third. That made me feel like the odds were much better in my favor to succeed :)
I would encourage him to go as far as he can possibly go. Yes, we sure all know how dreadful treatment is. Some cannot make it to the end - let alone consider extending. It's just such a difficult thing but I do think that every week he puts in gives him better odds of reaching SVR - and that is the goal. Is there any way to find out exactly what that lump is? I read Bug's post above can you call the doctor and ask about these things?
Good luck to him and to you too. He's so lucky to have you!
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