Friend had no sides during tx and didn't respond

[Dale_Ray]

I have a friend and he is 40 and just finished 12 weeks of treatment. He is a 1B, He found out I was in treatment so we have stayed in touch via telephone ever since. We go to the same church so it was good to have someone locally to talk too. He called me the other night and his test are showing he is a non responder to the treatment. He will wait on the next drugs to come along. If I have a point at all to this it is how amazed I was at him not having any real sides from it. He takes his daughters fishing every weekend and works like a machine building houses. My nurse had told me that she has noticed over the years that the harder the treatment is on someone usually the highter the rate of clearing. She said it was not scientific only an observation watching her patients. Any thoughts on this? Anyone? Dale

[sailinlady]

My GP told me the same thing.  Early on I went to him for something (??).  He asked how tx was going and I told him it was killing me.  He said there are no stats but he has noticed the patients with the worst sides usually respond to tx.  I was und at 12 weeks.

[jmjm530]

Dale said: My nurse had told me that she has noticed over the years that the harder the treatment is on someone usually the highter the rate of clearing.
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I'm sure they're many with light sides that cleared and vice versa. But still, there could be reasons for your nurse's observation. For some say ribavirin absorption is linked both to SVR and anemia. Therefore, someone with more anemia might have a better chance of clearing. I should also note that a recent small study contradicted this but studies contradict each other all the time and I personally think anemia and riba absorption go hand in hand. Maybe a similar mechanism with the Peg in terms of sides as well.

-- Jim

[sailinlady]

On the above, my GI would totally disagree.

Interesting thought on the anemia Jim.  I cleared prior to my hubby and he never had anemia like I did.

[bobbyullc]

boy- i am the way to svr with that criteria. any hope is helpful when going through the ups and downs of sides.
happy side affects to all.
bobby

[Dale_Ray]

Two people I know of that work at Fedex and went through treatment had horrible sides and ended up taking a leave of absence. I understand both were religious about medications and both cleared and have since ended treatment and continue to be clear. Maybe if doctors charted and evaluated the sides along with the blood chemical work they might find some corrilation. My doctor has total focus on blood levels and really interested in sxs. It would be interesting at least. This is not the first time I have heard this same story and like most stories there tends to be a smidgen of truth involved. The nurse who calls me from Roche (Pegasys) to check on me has also made a similar observation. May be nothing to it so if you're feeling great during treatment don't let my ramblings mean anything. I'm just sorry my buddy had to be pulled from treatment. It's really put him down and he has three little girls that really depend on him. I've tried to get him to visit this site and at least see what other options are around the corner. Say a little prayer for him. Throw me in there too. Thanks, Dale

[Dale_Ray]

The post above to salinlady was to you also

[Dale_Ray]

Amen maybe they can use the two of us for poster boys. Dale

[52TELE]

OK. I buy that. It makes sense , but do you think that if the anemia is treated , you loose the absorbtion benifit , or would that be after the fact?

[sailinlady]

Sorry about your buddy, with 3 little girls, there is no justice! Hopefully he can wait for a better treatment. I pray every night for all of us.  For those out there with small children still at home, my heart goes out to all of you.  God bless you.

We will tame this beast someday, I am sure of it.

[Alady1620]

Dale, sorry about your friend.  I don't know if sides have any correlation with clearing but, if they do, I'll definitely be SVR.  

I should note that some people in my support group report horrible sides when they treated yet they did not clear.  Then, there's another woman who had zero sides, treated 3 times and did not clear.  I think it is a **** shoot.

To bad we can't do some kind of poll.  I'd be interested in the results.

[Dale_Ray]

You're a sweet spirit Salin

[Alady1620]

sigh.  I guess I have a potty mouth and didn't know it.  The **** in my last post was c r a P

[NYgirl]

I bet that most of the people in the world who don't have sides don't come in to forum's like this looking for answers and to get help and just go on living their lives.  I'm not sure I really would believe it is 'sides' related to who achieves SVR or the doctors would be able to see someone with a specific side...or number...and say oh GREAT you are definitely going to CLEAR WOO HOO.

I just don't think there is ANY definitive ANYTHING that tells us anything aside from genotype etc.

I mean I HAD terrible sides in the beginning and could not clear and then when I felt great for a few months I DID clear and was sure I had not.

Remember - it's all a cr*pshoot.

If you feel good - do NOT worry that it's not working. THAT would be the WORST thing to walk away from this with!

[jmjm530]

Individualized tx plans? Some NP's have individual caseloads of over 200 patients. When I handed one an article of a new study, her response was -- "I wish I had time to read studies".

-- Jim

[jmjm530]

Well, I did, but only because I did my homework, challenged some of her protocols and started directing my own treatment. Later, I switched to a different doctor but continued particpating in all treatment decisions. I feel lucky because I know this approach won't work with all doctors. Still haven't found a dermatologist who will answer more than two questions and will take *any* direction at all.

-- Jim

[hep62pj]

well... i guess now i know why i didnt clear haaaaaaa

sides were really not too much a problem for me, it did not interfere with my daily routine at all, never spent one day in bed from it...

[NYgirl]

I really don't think it's a REAL BIG correlation I just can't.  Any blanket statement like that always make me real nervous...like when someone in here said "my doctor said all skinny people get SVR" (wow how nuts was that) I mean...there are ALWAYS diversities in every study and I'd hate for someone to quit thinking they weren't going to clear cause it was going too easy for them LOL.


PS I don't think you lose absorption benefit from the Riba by treating the anemia because one has nothing to do with the other does it? The epo is used to go in and grow stuff in the bone marrow...the riba has nada to do with that.  

I had REALLY bad anemia and Ribarash from the get go - really bad sides and in fact got the autoimmune problem now - and I didn't clear till week 24. If we were judging by how bad sides are I should have been clear then at week 4 no PROBLEM ;)

[can-do-man]

So no sides, no clear?. Seems that one of those so called hepos, you know the "top dog", "worlds best" would have picked up on this. Maybe we ought to play less doctor and more support here

[Dale_Ray]

One thing I'll never be accused of is giving detailed medical information. I pay a doctor for that. I do find it interesting how points of interest lead to a lot of common threads (ha) between us. Other than the medication that was prescribed to me this forum has offered up more help than my doctor was capable of giving concerning sides. Doctors don't study sides they study counts. Anyway back to the boogers and chumming that the girls want to talk about. Stay out of trouble. Dale

[jmjm530]

cdm says: Maybe we ought to play less doctor and more support here
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I thought "support" was covered in yesterday's breast stroke thread.

[can-do-man]

my point is, i see my hepo he ask hows the sx's and if i need anything. Im sure he does this with all his paitents. Now he wouldn't need a study to soon figure out that none of his people with little sides are not clearing but the ones calling in needing rx's for sx's are clearing. I just think with all the hepos out there a few would be smart enough to figure that out. And if not then why go to a hepo if they can't even see this. Plus the geno1 50-50% chance would change

[cuteus]

You do not have to endure horrendous sides in order to ensure SVR.
I did not get mouth ulcers, general rash, severe depression(another one that went around saying the more depressed the more likely to respond), nausea and vomiting. I was able to continue working, go to 6 Flags for the day a couple of times, classes at the Y, etc. It was no picnic, but no extreme, severe effects, and I am still negative. \
Maybe the docs tell their patients these things in order to make them feel better about tx?

[Dale_Ray]

I suppose that is why people are always coming into the forum with new studies reveal and give a reference address for more information. I'd like to think that all hepos are like machines with the same opinions and same convictions to their patients. It's sort of like opinions and ***holes they're all different and doctors are no different. You've been quite today are you doin okay. Dale

[returntosender]

I started to be annoyed by this discussion but then I realized that I don't have to apply it all to me!  What a concept, we are talking about tailoring treatment to our individual circumstances.  We bring a mindset of one size fits all - like the doctors would like to do - but we can certainly take all of this info and then apply it to our individual cases.  

In my case, I have moderate liver damage but lots of pre-treatment sx. When I started last year my dr said, 48 weeks and take all your medicine.  I never treated for this long before.  My thought is that I will do what I was advised to do. If that doesn't work I will get a biopsy and see if I have time to take a break and wait a while to see what develops. One thing for sure, if I dont get SVR, I will certainly look at longer treatment, pushing the reba, more stringent viral load testing and whatever other feedback I can pull from research and this forum. But what I am learning here more than anything thing else is not about T cells or TMA but how not to be casual about this disease. I really had no role model for responding to this disease.  I never asked anything because I didn't want to know. Watching you guys attack this thing and seeing how you do it is pretty inspirational for me.