Hep C Discussion Forum

DJ · Senior Member

RE: Is treatment worthwhile in older patients?

nohcvforme · Veteran Member

Hi, Malcolm, sorry to hear you are feeling beat up! I am excited to say that I finish my 48 weeks tomorrow with my last Riba! My doctor reduced my RIBA when I hit 8.3 for 2 weeks, then when I got up to 10 I resumed my normal dose. My advice is... If you feel like s***, fine. Wake up and feel like s***. Times like this are when you have to get a little mad and do that One day at a time thing. Thinking of you, and one day you'll be done and looking back!

alexm1122 · Member

I am 65 & going thru 2nd round of treatment; 1st Riba & Interferon tx went belly up. That was about 2004/2003. Now I am little past half way on the triple threat Rx w/UND.

It is a SOB! And yes I am housebound. Thank God I live alone & most friends understand to 'let him be'. Keep at it as long as ya can & try to develope solitary tasks. I can't believe how much I read now.

mallani · Guru

Hi all, thanks for the replies. No joy from my doc. Riba still at 1200mgms. No chance of a reduction until I drop below a Hb of 9.

Have now been below 10 for 12 weeks, and the fatigue is getting to me. Going out gives me a headache, I'm short of breath, and get dizzy on exertion. His reason for not reducing Riba is that in his experience, reducing Riba decreases chance of SVR, and he has several patients coping with Hb's of 8-9. I was too tired to argue.

Cirrhotics have more profound Sx, and have to do 48 weeks. Surely we deserve every chance to last the distance?

DJ · Senior Member

I was just curious how things are going.

Sunrise747 · Senior Member

Malcolm, if you are "parked" at 9.1 HGB that definitely explains why you are so fatigued. At that level I was pretty much incapacitated. With my doc anything below 10 and out comes the Procrit. Below 9 and I'm rushed in for a transfusion. I am now steady at about 11.1. Riba reduction (600mg) has allowed me to make it through and lead a semi-normal (emphasis on the "semi") life.

Phil G · Senior Member

I am not necessarily an advocate of med reduction but I was at that point where I felt something needed to be done, so I didn't argue, and there were benefits. I may sing a different tune in a couple of months.

mallani · Guru

Hi Phil, I had no idea that you worked all through Rx. I'm impressed. I'm going to press for a Riba reduction. When I previously mentioned reducing Riba to my doc, he was not impressed by the data suggesting there was no change in SVR after Riba reduction. He wondered how that could be assessed.

Phil G · Senior Member

My blood work, fatigue, and general well-being also improved a lot when my riba was reduced to 600 for the duration when my HGB approached 9. I would have done Procrit as well, but it appears that my doctor's preference is to reduce the meds. They all seem to be different. When I became convinced my HGB was going to tank, I did make sure he understood that I would not transfuse except to save my life. That's just my deal. Other folks have different opinions for different reasons.

jwmaher · Member

Hi Millani,

I don't know what week you are on now but I can tell you it doesn't get easier. When you are feeling your worst and the itch is about to send you over the edge; remind yourself you're giving up a year feeling like hell or worse; you'll will be rewarded on the other end with more years of feeling good and enjoying life rather than having that always in the back of your mind. I'm 71 and I come off the victrellis Aug. 10th and off all drugs on Nov.2nd. It still seems far away but I know I can do it and I can't wait to have my life back. My thoughts and prayers are with you. Keep in touch; we have to help you through this.

Mike

packerfan24 · Senior Member

As that great coach said " DON'T GIVE UP, NEVER GIVE UP." Joey V.

Ken

JoAnneh · Guru

Malcomb,
We had our first grand child in February so I say starting tx
At 52 is worth it. Yes as sx and fatigue continue its been normal to ??? My choices.
I am thankful for a chance to be cured as I wasn't feeling up to biking, etc... Before I started .
I bet u will be sailing the globe soon.
Remember to treat your wife w love, love, love!
As Carl mentioned think 24 weeks not 48 or u will
Torture yourself. Also, are u on antidepressant to help
With irritability??
U have such a bright mind and sitting around is
A real challenge for you. Write a book about your travels!
Sailing seems so dreamy.
Remember we are all in this together:)
You mean a lot to us, JoAnne

mallani · Guru

Carl, my doc. thinks my Hb, Neut. and platelets are all OK. My Hb is 9.1, Neut. 0.94 ( not sure what that is in the US) and platelets 59 (?58,000 in US). He is happy for my Hb to drop to 8.0, Neut. to 0.6 and platelets to 40. OK for him, but these levels are unheard of in normal treatment! I have been on 1,200 mgms of Riba from day 1. I do not want to take proctit or neupogen. My fatigue seems to be getting worse, and perhaps I need to force the issue. Thanks for your reply.

Sunrise747 · Senior Member

Malcolm, did your doctor reduce your Riba dose? Many of us are on reduced doses. I went the Incivek route and the "official" Ribavirin does for my weight is 1,200 but I have been on only 600 mg since 9 weeks. Definitely has made a huge improvement in my hemagloblin levels and therefore my energy levels. That might be another avenue to explore with your doctor.

EasternOntarioGirl · Member

Hey Malcolm. You hang in there! David has been through cirrosis, cancer of the liver and a transplant and now treatment. He is 61 and our family needs him around for alot longer (Lord willing). And so does yours. At this age we still have to be careful how we walk 'cause we don't know who is following in our footsteps. So hoist your sail up again and away you go. Best of wishes to your wife. Take care of each other.

"The age of 40 is the noon of life.

We cannot live the afternoon of life according to lifes morning,

For what was great in the morning will be little at evening.

And what was true in the morning will at evening have become a lie."

Fight the good fight Malcolm.

mallani · Guru

Thanks for your post, Tim. I guess my problem is that I had missed reading the post Rx surveys, and felt I had not fully assessed the Rx pros and cons. As both my parents had good quality lives and died in their late 90's, I asssumed my genes would give me a similar innings. Also my previous Rx's with double Rx had been pretty easy, and I did not expect the Sx effects to be so severe.

However, I'm here now, so 'accept the things I cannot change'.

Cheers.

hrsetrdr · Guru

mallani wrote:
Hi Mike, I apologise. You are more senior!
My post was prompted by reading the rather depressing surveys of post Rx patients. I've since rallied, and actually feel a bit more lively. I'll soldier on .
Good luck for the rest of your Rx.

Malcom, I'm glad to hear that you're getting by better now! Regarding the post subject: Is treatment worthwhile in older patients? of course quality of life is the paramount concern, but I think the prospect of being rid of the disease is a huge motivator to continue treatment. That being said, I fully understand and appreciate the "place" people can find themselves, when confronted with overwelming physical challange.

It's been said that God won't put more on your plate than you can handle...I guess what that means is that we find a way to summon more strength when confronted with adversity.

mallani · Guru

Hi Mike, I apologise. You are more senior!

My post was prompted by reading the rather depressing surveys of post Rx patients. I've since rallied, and actually feel a bit more lively. I'll soldier on .

Good luck for the rest of your Rx.

jwmaher · Member

Hi Guys sorry to say that your not the oldest. I'm 71 and I stop victrelis August 10th. I come off everything Nov. 2. All I can tell you is that it's the most difficult thing I have ever done in my life; somehow I am getting through it and as of Nov.2nd I'll be done and I can't wait to have myself back. It's all a personal decision; I decided if I can get another 5 to 10 years feeling good it's worth it: I know what the alternative is because I felt lousy before I started. Whatever you decide, I wish you the best.
Mike

mallani · Guru

Thanks Carl. Good advice. The forum support may get me there!

Sunrise747 · Senior Member

Malcolm...do your very best to hang in there for at least the basic 28 weeks that apply to Victrelis for non-cirrhotic relapsers. As I recall your odds are still good if you make it that far, just not as good as if you do the full 48 weeks. Every week you stay on treatment increases your chances of success. It is a whole lot easier to stare down a 28-week beast (only ten weeks to go!) than a 48-week one. And, hopefully, once you reach the 28 week mark, you can do a few more weeks. I told myself all along I was only going to do 24 weeks on the Incivek regimen. That helped get me thru it. But since, I had avanced fibrosis ten years ago they assume I am now cirrhotic so now say I should do the full 48. Well I have compromised and commited only to 12 more (36 weeks). Bottom line? Another few weeks of misery now will be long forgotten by both of us this time next year. But news that we need a transplant or have HCC will haunt us forever.

mallani · Guru

Thanks Bob. Appreciate your comments.

bc61949 · Member

Hi Mallani, I would encourage you not give up the remarkable gains you have made at weeks 8 and 12 undet. Giving up a year could get you an eay ten year add on to life with the peace of mind that you have slain the dragon. I know how you feel. I am 63 and will begin treatment within 5-7 days. I had tried the peg/rib back in 2001 and it was the most brutal thing I had ever done. I stopped treatment after 3 wks because I felt it was not worth it. Now retired, I figure nows the time but am anxious about the side effects. I hope you can stay the course and experience a svr. When I begin tx we can compare notes.

Best of luck to You and your Wife Bob

mallani · Guru

Thanks Vern. "Grant me the serenity to accept the things I cannot change".

12Step Guy · Senior Member

Hi, Mallani, I'm new here and weighed these same concerns and issues for months prior to starting a few weeks ago. While only age 63 I wondered if going down this road again was the wise choice. My first two attempts werent so easy, the fatigue, depression, brain fog all took a toll. Both times I had the mouth sores, insomnia and irritability.

Starting down this road again taxed my reasoning. Not sure why I did it, labs weren't bad, ultra-sounds and MRI's didnt show much. My only biopsy was in 1999 which showed 3rd stage cirrhosis, but I've often wondered how such a serious diagnosis could come from such a small tissue sample.

I started the triple deluxe Incivek delight, based mainly on a leap of faith. Made a calculated guess that whatever time I have left would be better without Hep_C being in the picture. But like you with having no evidence of what the future holds, does make this perplexing.

In the meantime I spend as much time as I can with the grandchildren and keep to my schedule as much as possible. At the very least maybe this experience will someday benefit others.

While this may be a rationalization, contrary to my rocky past; Ive been given a new life since I quit drinking and using. This gift has largely been due to the concept that by turning things over, letting go and letting my HP take over, usually results in outcomes far greater then I ever considered. Faith in the unexplainable, isnt that a hoot?

Vern

mallani · Guru

Thanks for the kind words Steff. I'll soldier on.

greenqueen · Guru

Hi Mallani,

You've raised a good point here. I know someone who is 64 and just recently diagnosed, but they are asymptomatic and don't have severe liver damage, like yourself. They have decided not to go for tx, especially as a younger member of their family did so and had a really bad time and although he cleared, is not feeling very well afterwards.

It must have been a difficult decision for you, being cirrhotic and now suffering very severe sx. As well as considering the effects of tx on older people, I feel that treating young children with these drugs is also very questionable. I was quite shocked when I found out the age at which tx is available.

I'd like to say a big thanks for all the info you've posted about Cirrhosis and hope that you get the SVR, after all you've been through

Steff xx

mallani · Guru

At 69 yo, I think I'm the oldest member on the forum. After 17 weeks on triple Rx with Victrelis, I am seriously questioning whether I should have started. My Sx are such that I'm virtually housebound from fatigue. My ability to continue to 48 weeks is uncertain. I am worried that my glucose tolerance has been shot to bits, and what other longterm problems I will face from the drugs. My wife is great but this is putting a great strain on our relationship.

Older ( say over 65's) patients usually have had HCV for a long time, and if not cirrhotic, will have significant liver damage. The Sx are more severe- I had double RX in 1998 and 2000 without any problems of note. The chance of SVR is quite good, but is it worth it? If you could guess what your life expectancy is, maybe you could estimate whether it is worth giving up a year of your life, in order to gain ? 5, 10, 15 years. As a well compensated cirrhotic, I probably had 10-15 years of good quality life before liver failure or HCC. It would be ironic to obtain SVR, then die of a coronary,CVA or unrelated cancer.

Until newer, less toxic drugs are available, treating older patients for 48 weeks should be carefully considered.

Hep C Discussion Forum

Legal Disclaimer: