Thursday, June 09, 2005

The results

Dr. Erb said the last biopsy was a 1 out of 4 for fibrosis and a 2 out of 4 for inflamation. This time it's 2 and 2 so there is a bit of progression but no panic as far as treatment goes.

His advice is we should start thinking about treatment again and what he would like me to do is a 3 year course of interferon with ribavirin for the first 3 months. He said that when I was on treatment my rna went to undetectable and my liver counts all went to normal so he feels if we do the ribiviran and the interferon for the 1st 3 months it will bring all the counts into line and then we can keep them there with the interferon. The anemia last time just kept on a downward spiral until the drug was discontinued and then I had to wait for the counts to come back up before I could take the ribavirin again. Twice that happened during the 48 weeks.

So then the next thing is money. He says it costs $2400 a month but we do have pharmacare and my husband has extended health benefits at work. Dr. Erb says that pharmacare will only pay for 1 - 48 week course of treatment and because I was on a drug trial last time and have never been funded under pharmacare then I should do it that way this time. But with pharmacare you have to pay whatever your portion is once a year. So if I was to start treatment now then I would have to pay my portion before pharmacare kicked in and then again in January when a new year rolls around I'd have to pay my portion for that year. So the plan right now is to go back in January and start the treatment then so that the first year of treatment falls in a full year of coverage. Then we will go to my husbands extended health. They pay 80% of the cost of drugs so that would still leave us paying $400 a month ourselves but Dr. Erb seems to think that the drug companies will kick in and help pay so that works for me.

I asked him if during this treatment if a drug trial became available would I be able to switch over and he said yes and no. Some drug trials will not let you participate if you have already had treatment but some do so if one came along that I qualified for then I could switch over to it after a 3 or so month period of quitting the drug and starting fresh on the trial. The final thing he said was, "You don't want to find yourself sitting there 10 to 20 years from now with end stage liver disease because you didn't have treatment now".

It is a relief to know exactly where I stand and to know I have 6 months to go before I start treatment. Starting in January is perfect for me work wise too because winter is a slow time for us so if I need to take time off work in the beginning it will be easy to get the time then. Also if I get sick from the ribavirin and need to take some time off work I always have medical EI to fall back on as well so just knowing that helps relieve the stress even if I sail right through treatment this time with no problems. Hey gotta keep positive! Plus I want to finish organizing the house.

Josh moves out the end of the month. Middle son who moved home 2 years ago so he could save up for his third trip to Thailand. He loved it there the first two times he went and wanted to go back one last time before he settled down and bought a place of his own. So he moved in and saved up and took time off work and went to Thailand for 5 months. When he got home he decided to stay home and save money for a downpayment and pay off all his bills. He has now done that as well and is moving into his own condo a few blocks away from us on the 29th of June (but who's counting the days lol) Then we want to finish clearing away 28 years worth of clutter and "I might need it someday" sort of stuff. We have already done quite a bit and I have been buying rubbermaid containers and bins and organizing what is left.

Oh yeah, that is something else, the biopsy and ultra sound report both showed I have a bit of a fatty liver. I have no idea what that is about and when I am done here I am heading to google to read up. I have been tired alot lately and find I am resting between chores and such lately as well. Been having pains under my ribs on that lower right side as well and all these symptoms are not going to get better until I start treatment. That is what I have to keep reminding myself. All the news today does not alter the liver disease symptoms I am having now and the only way to help is eat healthy, don't drink (which I haven't done for many years) and get rest when I know I need it. So that is the plan. To me it sounds good.


Ron Metcalfe said...

Hi Elizabeth Anne
Besides the insurance (and cost of drugs) another difference I notice between healthcare in the UK and BC is that here there is a set standard protocol for treatment and everyone gets the same (more or less). 3 months of ribavirin and 3 years of interferon is a very individualised treatment compared to here where everyone with type 1 (a & b) get 48 weeks of interferon and ribavirin. Period.

So it’s good your doctor is setting a programme just for you. It’s also good you have a plan of when you start and what you need to do before you start. I am convinced ‘getting ready’ is an important part of successfully getting through this treatment.

I see you joined the Forum on my site. I hope you find the discussions useful and that you will feel welcome to join in when and how you like. I know from other people it can be a bit difficult to know where to start on the Forum but you can see from the comments other new people have made that everyone replies just wanting them to feel welcome and comfortable.

I can understand what it’s like having grown up children still living with you – we have our youngest (21) still at home ……. sometimes, depending on how much fun he is having elsewhere. And I can understand about the prospect of clearing the clutter of 28 yrs – we have also collected stuff in our household for just about the same time. I dread the task of clearing it all out – and just cannot find the energy to even think about it at the moment, but I know it’s got to be done someday.

Wish you well. All the best

Elizabeth Anne said...

Hi Ron,

Since I have already done the 48 week treatment and relapsed when done, we aren't really looking for a "cure" with this treatment for me at this time. We are looking to maintain and not let the damage get any worse.

I also think it's important to have a plan when you start etc. Last time it seemed to happen pretty quick and I remember that hour drive in to the hospital for that first shot and to pick up a 2 week supply of drugs. I tried to convince my husband I had changed my mind and let's just head home. LOL needless to say he didn't go for it.

This time I already feel better prepared as I know the worst and what to expect plus as I said I have time to prepare the house and make things as easy as possible as far as keeping up the house while on treatment etc.

Last time my poor husband basically took care of everything himself and this time I am not going to let that happen.

Sue, Toronto said...

Hi Elizabeth Anne,

I admire your plans for maintenance therapy. Am unsure about BC, but know that here, in Ontario, if private insurance doesn't cover the meds one may apply to the Trillium Foundation for financial assistance. Perhaps there is something comparable in BC? Your hepatologist should know.

Completely agree with getting things organized for less energy during interferon and ribavirin therapy. One of the best things that's happened during my treatment is that we've arranged for major cleaning service of our home every two weeks (major thanks to my parents, who offered to pay for this service during my treatment). SO much less stressful for all of us.

Continued best wishes, Sue