Hep C Discussion Forum

greenqueen · Guru

RE: How about a sticky for the 36-48 weekers?

Minerva · Guru

Hi all. As much as i can totally understand the idea behind having a specific thread for those undergoing 48 weeks, i also think this may essentially cause problems.

The forum is for everyone with and affected by hep c and as has already been suggested, if the forum were divided in this way then many people might feel that they were being excluded if they didn't fall into a specific category. It is important that everyone feels able to access it and feel supported, regardless of any differences.

It is a very valid suggestion Mallani (and i am sure all the suggestions you made would make for appreciated and informative threads). Of course there is no problem with threads being started about any topic (within the guidelines, obviously) but there have been instances where people have felt that the forum is only specifically for people on tx, and i think having a specific thread for people undergoing 48 weeks might encourage that belief. As well as other reasons i have listed, i agree with Steff.

The forum is about supporting everyone, equally. We strive to be as inclusive as possible and everyone is entitled to the support they need. Every individual experience is different and it is important to avoid anything that might make someone feel excluded.

Hugs

Heather xxx

JIme · Guru

We are all in this together. 24, 48, whatever. Doesn't matter to me. I'll take my support from anybody anytime. Some of the best support I have gotten is from people who failed tx. I need all of you. Keep moving forward.

Have a great day!

krowdog · Senior Member

I agree with Steff, I think it could be divisive.

When I started Tx, I had no idea which group I'd be in. Would I need 24 weeks, 36, 48? Horrible side effects? Tx failure? Hospitalized? End TX early? No SVR?

We could make catagories for Geno 1, Geno 2, Incivek TX, Victrellis TX, Peg/Riba drug combo only, those with cirrhosis, etc. But the problem with that should be obvious. Each and every one of us is different, and would end up with our own category.

By the way, I have tremendous respect for those doing a full 48 weeks. Unlike people who have not done TX, I *KNOW* how you feel.

Just my humble opinion,

Brad

Shep · Guru

Oh dear--I did not mean to create a debate between short time and long term tx. When I read Roberta's post it made me think how difficult it must be to read about the relatively quick success. Everyone deserves support from this forum--it has helped me more than I can express. It hit hard that some were not feeling supported and than I may have contributed to that feeling.

I think the sticky is great idea.

JoAnneh · Guru

Steffe, thank you for your rationale
Thinking! I agree w you! I personally never thought about it but
I have always been glad to see 48 weekend on formun since it is my goal too!
I accepted from the beginning that this was not an event but a long journey!
I appreciate this formun!
I just can't think about that I have 44 more weeks and less chance of
Beating this disease. I must stay positive and grateful
For the chance to be cured even though I wondered does it really work for 48 weekers!
Love JoAnne

kr · Member

There is a very large difference between someone who starts incivek, is negative 4 weeks later, has 24 weeks (but only 12 with protease) and a 96% chance of cure and someone who starts treatment is still positive (but low enough to continue at 12 weeks), goes negative at 16 weeks (when the other group has only 8 weeks left) has a 66% chance of svr and has their life on hold for 48 weeks doing victrelis with food 3 times a day for 44 weeks. As Mallani mentioned it is most likely because the 2nd group has had hcv longer and/or has more complications or liver disease. A separate sticky would allow like these people with more serious issues putting their life on hold for longer to connect and talk for support and I really appreciated hearing from someone wanting to start this discussion - made me more connected than I had felt for a long time with all the short term successful people celebrating around me.

mallani · Guru

Hi Steff, Thanks for your comments. They are valid.

The long-termers are usually cirrhotics. For us:

1. The light at the end of the tunnell is a bit dimmer ( less chance of SVR)

2. We have had HCV a long time and may be older.

3. Cirrhosis and older age has more severe Sx ( particularly lethargy)

4. We have to worry about our 6 monthly liver imaging to exclude HCC ( how to do this is a thread of it's own)

5. We need yearly endoscopies to check for varices.

4. and 5. are not relevant to the short termers.

A sticky for long-termers ( or cirrhotics) should not be thought of as divisive, but merely catering for a small group with different circumstances.

-- Edited by mallani on Sunday 10th of June 2012 04:59:52 PM

greenqueen · Guru

Hi Everyone,

Was away all last week, so will be catching up over the course of the next couple of days.

This is the first time such a suggestion has been made and looking at the thread so far, I can already see problems with the idea. The fact that some doing less than 48 weeks have felt the need to apologise and somehow diminish their own tx experience signals the possibility of a divisive situation arising.

Obviously, a lengthier tx period means a longer time enduring sx that arise, but there are people who are having their tx either extended or reduced at very short notice, depending on their situation. There are also people who are doing a shorter tx and suffering very harsh sx and people on lengthier tx who are not having too many problems – as you all know the sx can be very unpredictable and every individual has different reactions.

The whole point of the forum is for people to support each other on treatment and share their experiences, the good, the bad and the ugly, regardless of how long their treatment time is. While I understand that the relentless grind of a long tx can be disheartening and depressing at times, to make some sort of division based on the length of tx could bring on it's own set of problems.

We would be grateful for more discussion and feedback from other members regarding this suggestion, having taken on board the comments already made.

Love Steff xxxx

Kellyw · Senior Member

I can't imagine it hasn't been done earlier it makes sense you would would want to talk to people with the same treatment length. Not sure what a sticky is but I'm guessing it is a spot set aside for just long termers, like our "in treatment"? Or just the triple drug treatment people.

mallani · Guru

Dear Shep and Dave, I do not mean to take anything you 24 weekers. You all deserve a great result and I do not mean to imply that the longtermers are ' special'. I would just like to get to know my other longtermers a bit better, and to support or be supported. At week13 I had hoped Sx would have eased a bit, but I am still basicly housebound, with no energy or motivation, headaches and dizziness. To read the " when is your last shot ' thead, and realize mine is 35 weeks away, does make me wonder what I'm doing.

Please don't think there is any elitist element to the suggestion.

Form · Member

Hi, I to have had the virus for 40 years. This is my third and last try at this. 48 weeks is daunting right from the beginning. After 12 weeks of Incivek I tried to tell myself it would be a chip shot from here out. I was so wrong. I am currently on week 40. For me every day is a challenge at this point. Rash, sore bottom, the ends of my fingers splitting open and bleeding, my hands ache so bad its hard to type this is every day After 40 weeks compassion and understanding on the other end begins to wear thin. I don't blame them, I am wearing thin to. Sorry for rambling on. Had a bad day.
I would love the opportunity to be part of a long timers sticky.

davesf · Senior Member

Having been a possible 48 seeker until my labs returned at week 13 and a 24 weeker for the past 5 weeks, I apologize if my excitement of having my treatment cut in half has been discouraging to those who must go the distance. I have a feeling that your request to have a sticky thread will happen here as soon as a moderator reads it.)

Shep · Guru

I apologize if I have been insensitive--I truly admire those of you who are having to do the much longer tx. You all have my full support--

kr · Member

I agree - I am a 48 weeker and I think there is a whole different mind set required. I know that the 24 and 28 weekers are dealing with the same side effects and self-centeredness but I have also felt a few times that when I share about having to do the whole 48 weeks, the shorter term people haven't really understood or said anything supportive. In fact, one person told me I was looking at the glass half empty rather than half full after she just finished and I had another 24 weeks to go. So I like your idea - but so far not a lot of discussion about it here.

mallani · Guru

I think those of us that are in for the long haul would benefit from a sticky. I am very happy to read so many members are getting close to finishing at 24 weeks. I wish them all SVR and rapid return to life. I must say I feel a bit down, realising I am at week 13 and have 35 weeks to go. We long termers have more severe damage, and often the side effects are a bit worse.

The long-termers probably do not have another shot at treatment, so the pressure to have it work this time is more intense. It will be many years before the new drugs are available to us, because of our liver damage. No drug company wants do do trials using cirrhotics. So this is it for a lot of us.

69yo cirrhotic, Geno 1b, undet at weeks 8 and 12. Had HCV for 40 yrs.

-- Edited by mallani on Saturday 9th of June 2012 02:11:52 PM

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