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Post Info TOPIC: Biopsy Results


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RE: Biopsy Results
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Here is the forums sticky thread on V-D

http://hepcfriends.activeboard.com/t33060393/vitamin-d-benefits/

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Diagnosed 4/13/10; Started Tx 8/13/10; SVR 7/27/11
PJ


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Hi Lizard,

I would ask your doctor about any supplement that you plan to take and the appropriate dosage.

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Diagnosed in 2006. Probably infected in the late 70s or early 80s. Genotype 1B. Starting TX on 5/5/11 with the SOC and Teleprevir. 



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ask Ron ...he's the D man



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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



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jumping in late here - shouldn't one get a blood Vit D level before taking really high doses? I have 1,000 mg pills, and take one every couple days. I go see my doc (nurse actually) on Tuesday as part of this trial I'm on, and will ask about it. I don't want to mess up the trial so will have to get permission before taking. But I was concerned because high doses of D can be toxic, I believe. I don't know what "high" is, however.

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Genotype 1b. Diagnosed 1991. Started treatment July 12, 2011, in clinical trials. Viral load greater than 1.5 mill. Don't want to be sick...



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Hi Wrath, oh yes, I understand completely where you`re coming from there.  We can accept responsibility for the damage we`ve caused to ourselves and our lives, but it`s so much harder to come to terms with the pain and worry we`ve caused to others, especially our nearest and dearest. I`m sure a lot of us can relate to that.

We can never change that, but by doing this tx you`ll be doing your best to make good of a bad situation, and I hope it all goes smoothly for you.  Good luck with the ADs.

Good to have you here on the forum, love,  Jill xxx

 



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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.

 

 



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Hi there Medusa! Oh man, your post made my day yesterday when I read it. I got so excited about your liver damage repair that I forgot to sign in and post because I got on the phone real quick with my mom to read it to her. My family rejoiced at your liver repair! haha Funny how these computers can bring people from different sides of the realm together. I'm so glad to hear you have had such good results. I hope my liver repairs like yours has. I'm going to give it the best shot possible. Thank you for the information and taking the time to say hi. Really good input.

Hi Cinnamon Girl. You are right about leaving the past behind and normally I don't have a problem with that. I think seeing my mom's fear and seeing my son's fear is what made me want to kick my own ass for being irresponsible earlier in life. I have been staying positive the last few days though and have been counting my blessings and lucky stars that I'm even getting to have the tx. I feel like I'm getting a shot at life with this tx. I've pretty much decided I'm going to start a low dose of the AD like you did and then we'll see how it goes from there. Thank you for your input and for sharing your knowledge with me.

Hi Captain Over! I am so grateful that insurance will cover. They are indeed covering the third drug and I am a 1a so it's of utmost importance to me. I looked at my vitamin Ds and I don't think I'm taking enough. They are 800 and I'm only taking two a day. Will up that dosage and will tell my Dr next time I see him. I really appreciate you taking the time to tell me your experiences with this. I have lightened up on myself and am trying to be nicer to me. On appointment day when I see everyone get upset and scared because of me is when I seem to get upset with myself most. I'm going to fix it all and make it better though and then they won't have to worry about me.

Thanks again everyone for all of the combined knowledge and care. I'm so so glad I found this forum at this point in my life. Ya'll are such an asset to me and I'm grateful.

As always, ~wrath

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This little light of mine - I'm gonna let it shine...



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Hi, BW:

I see that your insurance approved the treatment; I am wondering (hoping) that this includes one of the new protease inhibitors (Telaprevir or Boceprevir). If you are a Genotype 1 it will likely increase your chance for success. If you can't get one of those authorized, I would look very hard at the info on Vitamin D.

I am taking the Telaprevir, and decided to add the Vitamin D as well.  My Doc had no objection, the small studies that have been done on Vitamin D are extremely encouraging.

Best of luck, and for Pete's sake, don't beat up on yourself.  No one is perfect, and you are making positive steps towards getting yourself healed!

Best Regards,

C.O.

PS., You don't say what dosage Vitamin D you are taking. I believe the studies were based upon 2000-4000 IU a day. There were no adverse reports, and they had a phenomenally high success rate, but the study was small and limited.

 

 

 

 

 





-- Edited by Captain Over on Saturday 18th of June 2011 09:18:53 PM

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Genome 1A, diagnosed in 2010, probably from blood transfusion in 1985. VL 1.5-7.0  Biopsy 2/2    Began clinical trial for Telaprevir 5/2011. Week 4 - UND and liver enzymes in  normal range. Week 12 UND.  Hope to finish tx 10-26-11



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Hi Wrath, I`m with the others on this, please try to leave the past behind.  What happened happened, let it go and don`t feel guilty.  I know people are always on about positive thinking but in this scenario it does really help. 

I was taking AD`s before tx and for me that helped.  I started on a low dose so there was room for an increase, which at some point during tx I did

As for milk thistle, I took it a lot in the years before tx and it might have helped, who knows.  It certainly didn`t do me any harm, along with many other herbal products I took to try and help with my state of health. I stopped them all before tx though on advice from my Hep C nurse.

Good luck with starting your tx soon, you`re with a good bunch of people here to help you on your journey.

Hi Annie, fantastic news about your drop in liver damage!  It seems that recovery carries on for quite a while post tx.

All the best to you all, love Jill xxx 



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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.

 

 



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Hi to all the new forum members, just wanted to say that the liver damage can improve / repair itself on and after the tx. Mine was up to 3.5 or 4 fibrosis pre-tx, down to about1 or 1.5 at the end of tx. I'm now 9 months post tx, and it is  0.5, so a big improvement. I also have heard that milk thistle does not mix with the tx drugs, but like Kirstin, I have seen no real research into this. On tx I took vit D, but nothing else, and post tx I have been using milk thistle the past 4 months, though don't know if this has made any difference or not.

Bon Courage to all, Love Annie xxxxx



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! EXCELSIOR ! ONWARDS AND UPWARDS ! MEDUSA


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Hi Ron, Hi Kirstin! Thank you for the input. I started taking two vitamin Ds once a day last week and will continue throughout tx. I don't want to mess up the medicines once I start tx so I will most likely only take what I am instructed to take from the good doctor. Thanks for the heads up on that.

So glad it's Saturday and I hope everyone out there does something enjoyable today. Take care!

~wrath



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This little light of mine - I'm gonna let it shine...



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Just wanted to put my 2 cents worth in here & say that I was taking Milk-Thistle but was told by my hepatologist to stop using it, especially during TX because it masks results, could hinder Interferon treatment. That Silymarin may impair the metabolism of Ribavirin & Interferon & that the potential exists for increased toxicity of those co-administered drugs due to Silymarin. I have read that there havent been any 'real' research into this (I could be wrong) but I decided to quit taking it in the chance that my Dr is right. I do take Vit D though, which I believe to be an essential part of Tx .



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Genotype 3a Started tx 11 May 2011 for 24 weeks. With scarring. VL before tx= 4 million.. UND@4 weeks. UND@12 



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HI Lisa,

I quit taking all supplements (like milk thistle) except for a daily regiment of multi Vitamins and Vitamin D3 supplements (4000 units a day).

Have a great week-end.

Ron



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Genotype 1a Diagnosed in 1991. Started tx April 27 2011 for 48 wks. VL before tx  1.6 - 4.6 million. RVR-week 4, UND-week 8 

Vitamin D3 suppliments can increase chances of reaching SVR. See Nutrition section for links.



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Goodevening to all. TGIF. So glad tomorrow is Saturday.

Thank you Mashar and Gnome gardener for the encouragement and wisdom. You both are right about staying positive and even the doctor said that the ones who have good support systems and positive outlooks usually do best. Today I've really been giving myself pep talks and have been starting a list of things to do to make life easier in the near future for all involved. For me, formulating a plan helps. Good to hear the mri is standard procedure.

Hi Anatolya. That is so cool that you are undetectable. I'm a 1a like you. Today we contacted insurance and all they need is a pre approval thingie from doctor and I am thanking my lucky stars they will cover the medicines. So glad that one very important thing is going my way. I'm going to read up on the milk thistle and other items you mentioned. Keep up the good work!

Howdy PJ! It's good to hear you are well on your way with the 7th shot. You're right about just kind of wanting to fight this battle and get it behind me. I can't have it hanging over me. Doctor talked like I'd be on the treatment within a couple of weeks so I'll be right behind ya. After talking and thinking it over, I am considering just getting the anti depressant right off the bat. I need to utilize every tool out there so I can win. It sounds like you have the right mindset and I'm encouraged by your reports. You keep on keeping on!

I hope everyone has a good peaceful weekend. I hope to find myself fishing at some point!

Peace, ~wrath

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This little light of mine - I'm gonna let it shine...

PJ


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Hi Wrath, I am far from an expert, just learning as I go along as you are.

I cannot tell you what to do, but I think that if I were you I would start on an anti-depressant right away, as that will also help with your anxiety and many docs want you to take one while on treatment, though some do fine without. I'm of the mindset that if it's available, and may help, might as well try, and prozac works well for me. Of course all drugs have their drawbacks.

As far as your biopsy results, that would push me towards treating right away also. My results were not that far a long and yet I found I was ready to treat, just ready to be done with this thing, you know? I was tired of feeling tired and having headaches all of the time.

I'm pretty sure the liver can repair and heal itself unless you are in advanced stage with cirrosis, but it needs our help to stop the virus from attacking it.

Again, not trying to be pushy, just telling you what I would do in your position. And, I just did my 7th shot so have a good feel for how it's going to go.....not easy, but certainly doable. I do have good days where I can get a bit done, and some where I must just rest and am still working except for one day a week after my shot.

Many hugs to you!!!! pj

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Diagnosed in 2006. Probably infected in the late 70s or early 80s. Genotype 1B. Starting TX on 5/5/11 with the SOC and Teleprevir. 



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Hey Wrath,

I had my  biopsy 3 months ao before started the tx.I have learnt that I am in stage I, mild fibriosis.  maybe we cannot stop it to progression but we can make it slower. I am sure you have on special diet, no, even one sip alcohol and cigarette.you should be away from certain type of foods and drinks. you shouldnt take any pain killer or pills unless it is very emergency. I hope it is help. and milk thistle, licorice root and sam-4 also helps a lot.



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38yrs old, contact with virus in 1995, diagnosed 2008, 1a, biopsy: stage I,started tx may 2011,Tegobuvir+interferon 2b+riba, UND @ week 2.


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Hi Beautiful Wrath, The decision to treat or not is and will always be yours...I know it is scary but it seems that you have a good doctor. Finding a doctor that you can trust is key! I cannot help you with your decision but I can tell you this: for ME, it did not matter how long I had, 10 years, 2 years or 50...I could not think about that. For me it was all about getting rid of my room mate of 20 years, this sneaky virus. One day I decided I deserved a single...we all do! Whatever your decision is, you absolutely need to forgive yourself for the past...let it go. I know it is easier said than done but this treatment is about looking forward, staying focused on the future and getting well. You deserve health for your body and mind and you will get there... Best of luck to you, J. ...and yes the MRI is pretty standard procedure, i had many even when I was a stage 0.

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Genotype 1b. Diagnosed in 1991. Stage 2 biopsy. Started treatment end of August 2010. Interferon 180 and Riba 1200/day. VL of 4,000,000 before treatment.UND since week 4 PCR. Did 44 weeks. Still UND 7 weeks after end of treatment.


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Beautiful Wrath,

Well I really don't know alot about hep c but I have sure learned alot from these boards.  We are lucky to have some members hear that are very knowledgeable and I always look forward to there posts.  I do not think I have that much damage to my liver but I did have some.  I know I was shocked to learn I had it .  My husband has been wonderful throughout my tx especially since he loves to go go go and with my current energy level that is just not gonna happen.  Do you know what type you are?  I think with the new tx out geno 1 is having a good success rate.  I am 3a which only does tx for 24 weeks but I do worry about relapse since I was not undetected until 8 weeks.  I know that all the regrets from your past will not change anything and will not help you in the long run so with that know you need a positive attitude and my Dr. said most people die with this disease rather than from it.  So if you have stopped the drinking and are eating healthy you are already helping slow it down. Best wishes to you.

hugs,
Mary



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Geno 3a, started 24wk tx 2/24  und @ 8 wks ended up doing 32 wks but 6 mo pcr UNDETECTED :D

A positive attitude can go a long way!



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Hello there.  I hope this note finds you all in good spirits and feeling well. 

Had some new input on my situation and just wanted to bounce it off of ya'll and see what real people had to say about it.  Have gone over it all with the good doctor and then did some research myself online, now just wanting real life experiences and thoughts. 

Biopsy says grade 3 stage 3.  He told me what that means in medical terms and he sat with my family and I for thirty minutes answering questions but can anyone tell me what it actually means in real life words?  He said around ten years for me til I reach stage 4 if we left it alone.  Treatment stops the virus and the damage being done and then you live with the current damage, right?  Did you cry at the doctor's office when you found out your stage?  I didn't think I was that far along and got emotional.  I'm embarrassed but know I should not be.  We are shooting for treatment starting in 2-3 weeks.  He wants an abdominal MRI.  Is that normal?  Do ya'll think taking a mood elevator right off the bat would be better than waiting until you possibly need one during treatment or should I just wait?  What else should I be doing?  He did say that I seemed rather educated on the subject and I told him I had an entire group of people online that were pros and generous with advice.  Thank you so much for being here.   I'm on overload again which seems to happen on appointment day so I am going to take a step back and try to regroup now.  Just felt the need to ask you all what your thoughts were on it all.  Feeling a little scared and like I'm backed into a corner now.  Also find that I am still beating myself up for allowing this to happen in my life and for not taking better care of myself in my younger days.  All of this money and effort and worry and I caused it.  Not a good truth to have to look in the eye.  Okay, that's all for now.  Thank you again for being here.

~wrath



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