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Post Info TOPIC: I'm lost. Oh. And new here.
Bloomster


Senior Member

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RE: I'm lost. Oh. And new here.
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Welcome Mary.  You'll find a lot of support and encouragement here.



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My husband had genotype 1a, 46yo, started triple therapy (peg/rib/vic) 23rd July 2012, VL prior to treatment 14 million, UNDET 12, 24 weeks, EOT 24th June 2013, EOT +1.5 weeks UNDET, EOT +12 weeks & EOT +27 weeks UNDET; SVR January 2014
dragonfly


Senior Member

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Welcome Mary,

It takes time to absorb the implications of diagnosis - I had never even heard of Hep C when I was diagnosed.  There are ways forward and people on this forum will talk you through concerns because we've all been there.  This is a very safe place to be.  Good luck to you.

Love,

Dragonfly xxx



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3bz


Newbie

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Thank you Matt and Jill. Hope is a valueable gift. I will com e back and post the final viral load, type? , etc.......most here seems so helpful and I know from being on the RADD ( rare disease and disorders) group with Carcinoid, experience is worth ba zillions.... Mary. Aka Nana.

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Aka nana
Matt Chris


Guru

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Welcome. Mary

The forum can really help you with your journey, with many members having great insights into the ups and downs of the treatment.

So don't be afraid to ask...

Matt



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
Cinnamon Girl


Guru

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Hi Mary, and welcome to the forum!  A lot of these questions will need to answered by your doctor, given your medical situation, but I wouldn`t jump to any conclusions about liver damage before you`ve had further tests done.  As far as treatment options for Hep C are concerned, your doctor will do a test to determine your `genotype` which is the particular strain of the virus you have, and that along with other tests will give an indication of what would be most suitable plan of action for you.  Some people have minimal liver damage even after having the virus for a long time and can afford to wait for new `all-oral` treatments which are in the pipeline, whereas for others it`s best to start treatment sooner.

I was about your age when I did tx (treatment) and was living on my own, and we have many others on the forum in the same age group or older who have either finished tx or are still on it now.   I won`t say it was easy, and the sx (side effects) do vary from person to person, but it was do-able, and I was lucky enough to clear the virus and have felt a lot better since.

Keeping to a good healthy diet is sensible with Hep C, and most important of all is to avoid alcohol.  Some people do like to use herbs and complementary medicines to help with symptoms, but it`s advisable to check them out with your doctor first.

Once you`ve seen your doctor and got some more info together you`ll see things much more clearly, I`m sure, and in the meantime try not to get too stressed.  smile

All the best of luck to you, Jill



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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.

 

 
3bz


Newbie

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Posts: 2
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When I was diagnosed with Carcinoid Cancer in 2008 I'd been on a 10 year journey to find out what was wrong nd why so much pain.?   The average journey to find this rare and little known disease is 6 years as it mimics itself as so many other diseases and is mean but slow growing. Its also known as NeuroEndocrin Syndrome cancer.   Other cancer treatments are avoided with carcinoid so you don't look like you have cancer.  Trial drugs are used At certain disease levels. There are few Drs who know what to do and in what order, SO YOU have to manage it.  I just returned from Vanderbilt in Nashville for my blood work. I live in the Dallas area.

Ive managed Carcinoid and its syndrome well.  NOW finding out I have Hep C has blown me it of the water because I feel I have to learn and know it all to properly care for it.  I was a drug user and a runaway at the tender age of 15.  IM. 61 now. I just got a call from the Dr saying he wanst to discuss treatment options ASAP and with a family member if possible.  But not specifics yet.

Therefore I feel there is likely liver damage and am lost.   With Carcinoid you have to take treatment options in a specific succession or your options are reduced if you do the wrong one first?  Does that make sense?  and some of the thep c treatments sound like they don't work? Or are not easy on a single lady living alone? Is there a list of options and their priorities or order in which they are attempted ?   If I have had this almost 50 years is it best to leave it alone?  Wait,  Instead of pushing the liver harder? 

I come from a holistic family.  Diet and herbs n supplements are what's familiar to do after research. 

Anyway hello to you all, and if you don't mind I normally say Bless n Keep.  



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Aka nana
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