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Post Info TOPIC: Anyone in Tennessee
Cinnamon Girl


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RE: Anyone in Tennessee
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Tess1971 wrote:

Does anyone here know what is involved to start some sort of support group.  Seems there are none here and definitely there is a need.  I am retired and definitely would the time if I found the need. 

 Hi Tess, this handbook from the Hep C Advocate website gives a lot of information and advice about how to start a support group, you might find it useful to read through.

http://hcvadvocate.org/hepatitis/factsheets_pdf/Support%20Group%20Handbook.pdf

Sounds like a great idea, good luck and let us know how you get on!  smile



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Tess1971


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Does anyone here know what is involved to start some sort of support group.  Seems there are none here and definitely there is a need.  I am retired and definitely would the time if I found the need. 



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Type 2b, 3485370 IU/mL VL, sovaldi/ribavirin-12weeks, treatment end 11/15/14 SVR-UD, SVR-5-UD, SVR-14 & 32-UD. (64 yr old with hepc since 1970s)

 
wmlj1960


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Sounds like your on top of it and certainly more knowledgeable than myself. Your likely right about his reasoning and I can understand in a way...

If your on 12 weeks then your almost finished with Tx and Sx. I'll be looking forward to your post in the near future saying SVR! smile

 



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

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Tess1971


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Not a chance - I have copies of all blood work going back to 1997 from all doctors and labs.  I see requests before blood is drawn etc.  I am considered very tough patient who is on top of things.  Known this doctor for long time also and he talks straight with me as I am also older than him   LOL LOL  He does this way with all patients, I am just guessing on his reasoning.  He has told me in past that when he treats he checks blood work for anemia etc etc, but, never viral load until treatment is completed as that is when it counts in his experience and opinion.

Forgot to  mention - on 12 week since I am type 2



-- Edited by Tess1971 on Saturday 25th of October 2014 01:32:19 AM

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Type 2b, 3485370 IU/mL VL, sovaldi/ribavirin-12weeks, treatment end 11/15/14 SVR-UD, SVR-5-UD, SVR-14 & 32-UD. (64 yr old with hepc since 1970s)

 
wmlj1960


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Tess1971 wrote:

Yeh, I already found that and had put some info, but, not sure what else to put.  I have a dr that does not check VL until one month after treatment is completed.  A lot of drs are doing that now to ensure some patients continue and are not influenced by results either way.

 

I'm wandering if your Dr doesn't  have VL test done or you are just not made aware of the results for the reason you gave about 'influence'. Someone with more knowledge on this issue may be able to help you figure that out if you desire.

I see from your post in another thread that you are on week 9 of Sov / Riba. Is your Tx scheduled for 12 weeks or 24 weeks? (something you could add to your signature).

I'm on my 13th week of Sov / Riba  of a 24 wk Tx. I'm dealing with Sx's pretty well other than, like you, fatigue and confusion also joint pain in my case.

One other question: My hepatologist wanted to treat me with Sovaldi/Olysio, but my Medicare insurance would not approve payment so I was forced to treat with Sov/Riba according to AASLD guidelines. Can I ask why you are also being treated with Sov/Riba rather than Sov/Olysio, available 'off label' at the time both of us started Tx?

 

 



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

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Tess1971


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Yeh, I already found that and had put some info, but, not sure what else to put.  I have a dr that does not check VL until one month after treatment is completed.  A lot of drs are doing that now to ensure some patients continue and are not influenced by results either way.

 



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Type 2b, 3485370 IU/mL VL, sovaldi/ribavirin-12weeks, treatment end 11/15/14 SVR-UD, SVR-5-UD, SVR-14 & 32-UD. (64 yr old with hepc since 1970s)

 
wmlj1960


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Tig56 wrote:
. Feel free to leave some info in your signature section. Mike has a great bit of info that will assist you in setting that up. @Mike whats that link?

 If you like you can create a signature with information specific to you so

this can be quickly viewed by other members at the bottom of each of your

posts.

To create a signature:
(#1) - Click on 'User Details' circled in 'Red' in the picture.
(#2) - Click Signature circled in 'Green'
(#3) - Enter your information in the 'Subject' area circled in 'Blue'
(#4) - Click on 'Save Changes'

You can veiw other members signatures to get an idea of what information to

include such as: genotype, date of diagnosis, any former treatment if

applicable, Rx's you currently take if applicable, viral load, lab results etc.

Some of the abbreviations used in the signatures are unique to this forum

so to familiarize yourself with a list of them click HERE.



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

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Tig


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Hi Tess,

I'd like to welcome you to the forum too! Im glad you're here and happy to see you've already met some fellow members in your section of the country. I recall someone else here mentioning they are in the Nashville area too. We've got a great group here and you are so very welcome! I look forward to following your progress and learning more about you. Feel free to leave some info in your signature section. Mike has a great bit of info that will assist you in setting that up. @Mike whats that link?

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 
Tess1971


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I am in middle Tennessee, west of Nashville. My doctors are in Nashville and that is where I worked. I have learned quite a bit doing my own research since the late 90s - I have been relentless - LOL Took many TCM protocols over the years to maintain until a treatment without interferon was available. I actually followed all of them, even the ones that never panned out, until sovaldi..I had told my gastro that I was interested in considering treatment after it had been around a bit.



-- Edited by Tess1971 on Friday 24th of October 2014 02:19:25 AM

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Type 2b, 3485370 IU/mL VL, sovaldi/ribavirin-12weeks, treatment end 11/15/14 SVR-UD, SVR-5-UD, SVR-14 & 32-UD. (64 yr old with hepc since 1970s)

 
wmlj1960


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 Hi Tess. Welcome to the forum!

 I'm actually a resident of north MS near the MS/TN state line, but to save on transportation cost I also have an apartment rented temporarily in Memphis TN close to my 3 Dr.'s office's.

 Where in TN are you located?

I haven't found any HCV support groups in the Memphis area other than one that is for current and former patients being treated where I'm being treated.

I've learned much more about HepC on this forum than I've learned at those support group meetings, but I do go and I understand why you are looking for a support group. Now that you've mentioned HepC support groups, I'll do some more digging and I'll let you know if I find anything.

 I have a history of alcoholism / drug addiction so I go to some AA support groups which helps some on the dealing with life crap, although there's not much identify ability for HepC there but it's certainly better than nothing. smile



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

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Groupergetter


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I think Mike, aka wmlj1960 said he was in Tennessee.  He and Brownie help to keep us smiling  smile

2b or not 2b is the question?  Not 2b is better smile



-- Edited by Groupergetter on Thursday 23rd of October 2014 11:28:56 PM

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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
Tess1971


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I have noticed that everywhere I go that I  am always the only one in Tennessee.  There are NO support groups of any kind here either.  This is why I seek out forums on the internet.

 



__________________

Type 2b, 3485370 IU/mL VL, sovaldi/ribavirin-12weeks, treatment end 11/15/14 SVR-UD, SVR-5-UD, SVR-14 & 32-UD. (64 yr old with hepc since 1970s)

 
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