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Author Topic: newly diagnosed  (Read 16555 times)

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Offline metricscaler

  • Member
  • Posts: 13
  • diagnosed 6/6/15
newly diagnosed
« on: July 15, 2015, 09:59:08 pm »
Hi I was just newly diagnosed about a month ago with HCV type 3 I guess just got back from the internist. Found this forum figured it might help to join , my spleen is enlarged and my platelets are low 39 , some thing about portal hypertension after I had a CT scan . I guess the next step is to see how badly damaged my liver is and see if I can get approval for treatment . feeling really sad depressed my wife's pretty upset I post any developments see if I can get some advice I think I need to start eating better anyway hello lol I'm James any help would be great.
Live each day to the fullest.

Offline Scoutdoy

  • Member
  • Posts: 452
Re: newly diagnosed
« Reply #1 on: July 15, 2015, 10:31:32 pm »
Hi James
I am new to this forum but not new to hepatitis.  I was diagnosed in 2007 and can tell you that it was pretty devastating to get diagnosed. After I accepted the fact that I had it, and quit trying to figure out exactly how I got it, things got a little better.  It doesn't matter how, just that you have it.  Get to the doctor and find out what your liver numbers are and you will have a starting point.  This forum has a lot of good reading and helped me with many questions I had and still have.  I start Harvoni on July 23 and I am grateful I was approved to receive it.  Good luck...it will be ok

Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline metricscaler

  • Member
  • Posts: 13
  • diagnosed 6/6/15
Re: newly diagnosed
« Reply #2 on: July 15, 2015, 11:15:25 pm »
Hey thanks man I really appreciate the response. Yes finding out what kind of shape my liver is in is the next step for sure I also think I need to stop reading so much stuff on the internet its to scarey. This seems like a good place to be lots of information and support , good luck with your treatment I'll look forward to talking to you again when your cured !!
Live each day to the fullest.

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: newly diagnosed
« Reply #3 on: July 16, 2015, 12:09:23 am »
Hi James. And welcome to the forums! :)

Yes, for sure it is certainly upsetting when you first get the news. I second what scoutboy said - don't waste time trying to figure out where when or how you got it. doesn't matter at this point. the important thing is to move forward with medical attention, starting with the question of what condition your liver is in - what stage of fibrosis. It runs from 0-4, with 4 being cirrhosis. Your doctor will sort you out on that. But the easiest and least invasive way to get a first look at stage of fibrosis is with a fibroscan (specialized ultrasound) or fibrosure (blood test).

Do you know for certain you are Genotype 3? Because that will influence your treatment options. I am geno 3. We are the hardest to treat. Just our luck, right? ;)

But really - the thing to remember is: The Cure Is Here. It has arrived. Even for Geno 3s. We can ALL be cured now of Hepatitis C, and just by taking pills. No interferon injections necessary.

I am nearly done with my 12-week treatment of Harvoni+Riba and have every reason to believe I will be cured. In fact, I am probably cured already as in no virus in my body. But the viral load test that comes 12 weeks AFTER End of treatment is the definitive measure these days for "cured".

Eat a healthy diet - fresh fruits and veggies, whole grains, minimal white flour and sugar and salt, no alcohol at all. Cook from scratch, avoid fast food and pre-made food in boxes or cans (often high in salt, sugar, other stuff) Drink plenty of fluids (water is best). Do some exercise every day. All these things help. It turns out drinking coffee is beneficial to liver health for Hepatitis C people. So if you are a java drinker, stick with it.

You will be cured. We all will. :)

Kim



« Last Edit: July 16, 2015, 12:12:13 am by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline metricscaler

  • Member
  • Posts: 13
  • diagnosed 6/6/15
Re: newly diagnosed
« Reply #4 on: July 16, 2015, 12:36:19 am »
Hey thanks Kim that really means a lot.I live in British Columbia Canada so it seems there's a lot of really good doctors here that's a blessing. One thing is my spleen I quite enlarged and my platelets are pretty low so there trying to figure that out also whether it's because of my liver remains to be seen . the specialist is all over it though I have another oncologist that I've been seeing (  my lymph nodes are a little enlarged so I might have a low grade lymphoma) man when it rains it pours!! Yes I do eat a pretty good diet and live a clean life. it's the waiting that can be stressful I've been getting so many tests as of late , bone marrow biopsy , CT scans gallons of blood work lol or so it seems but I'm staying positive and trusting my doctors to do the right thing. Thanks again its nice to know there's other people who have gone, are going through this as well as terrible as that seems. I wish nonone had it really there is a stigma a
Live each day to the fullest.

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: newly diagnosed
« Reply #5 on: July 16, 2015, 01:08:47 am »
Hi James. I am getting my Harvoni+Ribavirin through a clinical trial involving 100 Canadian patients with genotype 3 of HCV. And the trial says it is still recruiting, and there are 3 trial locations in BC.

The link to the trial is here:
https://clinicaltrials.gov/ct2/show/NCT02413593

Something worth considering. If they are really still recruiting in BC, you could be cured in a matter of months from now (assuming you are Geno 3).

kim :)
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline metricscaler

  • Member
  • Posts: 13
  • diagnosed 6/6/15
Re: newly diagnosed
« Reply #6 on: July 16, 2015, 01:22:32 am »
Hey thanks Kim I just sent them an email hopefully I'm approved!! What kind of hoo po s did you have to jump over to get accepted?
Live each day to the fullest.

Offline KAL

  • Member
  • Posts: 35
Re: newly diagnosed
« Reply #7 on: July 16, 2015, 01:42:16 am »
hi James , welcome to the fourm!   you mentioned portal hypertension  http://www.hepatitiscentral.com/hcv/liver/portal-hypertension/  ,,,,,,, as the liver becomes damaged the portal vein becomes restricted the pressure goes up and the spleen becomes inflamed and traps platelets ,,,,, i had the same thing from my first lab test before treatment  , then , at my 4 week test the hep. c virus was undetected and the platelets began to rise .  im at week 11 now and feeling pretty darn good , just a few side effects from the ribaviron .
take really good care of yourself and like Kim mentioned eat a healthy diet.,,,,,and as Scout said , get with your doc on all your #'s ,, get a copy of your tests from the nurse , you can google all the functions to get an idea of what it all means.
good luck James! keep us posted.............K
age 57 male
diagnosed 1980
geno type 2b
f4 cirrhosis(early/compensated)
sovaldi / riba 16 weeks
1st. day tx may 4th. 2015
4 week test Undeteced !

Offline metricscaler

  • Member
  • Posts: 13
  • diagnosed 6/6/15
Re: newly diagnosed
« Reply #8 on: July 16, 2015, 01:53:55 am »
Thanks kal and yes I will get my numbers from the nurse next time . that's makes me feel better about platelets rising I'm always bleeding from somewhere it seems mostly my gums, its a bit if a worry if I was to have a fall or some thing. Can you remember what your platelets count was? Anyway thanks for taking the time to help out my mind at ease it really helped.
Live each day to the fullest.

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: newly diagnosed
« Reply #9 on: July 16, 2015, 02:15:26 am »
Hey thanks Kim I just sent them an email hopefully I'm approved!! What kind of hoo po s did you have to jump over to get accepted?

Hi James. I think you would need to be referred by your doctor to that trial or any trial. But you can show your doctor this trial and ask him/her to refer you. In my case, it was a nurse connected to my care who referred me to that trial. I don't know if it works to contact the trial directly without a doctor's referral. But it can't hurt. And there will be other relevant trials as well for Geno 3s.

For that particular trial, there is a screening test, which is simple if you meet the criteria. That trial won't accept Geno 3s with cirrhosis (F4). And they give you a fibroscan as part of the screening test to make sure you aren't F4.

good luck! :)
kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Scoutdoy

  • Member
  • Posts: 452
Re: newly diagnosed
« Reply #10 on: July 16, 2015, 03:26:57 pm »
You see James...you aren't alone. I would suggest you stop reading so much on the Internet though.  The reason is because you don't know what stage you are at yet. And why put creepy thoughts in your head if it's not even necessary.  Easier said than done I know but try to wait. Don't read stories and treatments for people in F4 and get your blood pressure up only to find out you are an F2. Nothing good or bad will happen overnight.  Keep us posted , we are here for you

Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline metricscaler

  • Member
  • Posts: 13
  • diagnosed 6/6/15
Re: newly diagnosed
« Reply #11 on: July 16, 2015, 06:45:51 pm »
Yes I agree I'll just have to wait till I get more information and go from there. Thanks for the support. If your ever up this way drop me a email I'll take you sport fishing for salmon.
Live each day to the fullest.

Offline Scoutdoy

  • Member
  • Posts: 452
Re: newly diagnosed
« Reply #12 on: July 16, 2015, 07:00:04 pm »
That's Awesome....LOL
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline KAL

  • Member
  • Posts: 35
Re: newly diagnosed
« Reply #13 on: July 23, 2015, 01:36:52 am »
Thanks kal and yes I will get my numbers from the nurse next time . that's makes me feel better about platelets rising I'm always bleeding from somewhere it seems mostly my gums, its a bit if a worry if I was to have a fall or some thing. Can you remember what your platelets count was? Anyway thanks for taking the time to help out my mind at ease it really helped.

hi Metricscaler , my platelets before treatment were 61 , and 71 at 4 week lab test on treatment . and i also had some gum bleeding pre treatment , im at week 12 now , no more gum bleeding..........iv'e only had a basic cbc test since so i don't know the #'s at this point ........i'll find out at week 16 , eot.

i hope you get approval  without to much hassel............ , it's like a new lease on life !
all the best,,,K
age 57 male
diagnosed 1980
geno type 2b
f4 cirrhosis(early/compensated)
sovaldi / riba 16 weeks
1st. day tx may 4th. 2015
4 week test Undeteced !

Offline metricscaler

  • Member
  • Posts: 13
  • diagnosed 6/6/15
Re: newly diagnosed
« Reply #14 on: July 23, 2015, 08:33:22 am »
That's good need man!! I'm just waiting to get my fibro scan ( Aug 26 th) hope its not all bad news my platelets have been pretty low , around 28 to 38 hope that's not an indication of a really bad liver! Hopefully I can get some treatment quickly my internest said I can be a long road to get approved. Thanks for the words if encourage ment.
Live each day to the fullest.

Offline Scoutdoy

  • Member
  • Posts: 452
Re: newly diagnosed
« Reply #15 on: September 10, 2015, 05:19:11 pm »
Has anyone been told by their doctor or read that it is safe or not to get a flu shot while on treatment?
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: newly diagnosed
« Reply #16 on: September 10, 2015, 07:23:10 pm »
Our wonderful moderator Lucinda Porter, RN recommends getting a flu shot:
http://blogs.hepmag.com/lucindakporter/2014/09/hepatitis_c_and_flu.html
An excerpt: "I asked three well-known hepatologists if they recommend the flu shot to patients on current hepatitis C treatment, and they all said 'yes.'"
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Scoutdoy

  • Member
  • Posts: 452
Re: newly diagnosed
« Reply #17 on: September 10, 2015, 09:29:35 pm »
Thanks gnat, I have children in several different schools and I work with the public, the perfect storm for me getting the flu.

scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

 


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