I have been diagnosed 2 months ago and since then I am doing one test after another.
I think that next Tue I will find out what the line of treatment will be (or maybe not)!!
Everything started with having some tissue surgically removed identified as Lymphoma. That was shock number 1.
I followed up with bone marrow biopsy and it showed that the bone marrow is involved as well. So here we are with Stage 4 Marginal Zone Lymphoma. That was shock number 2. At that point I asked to be tested for every possible virus and bacteria. So on week later I have been told that I am hep C positive. On top of that anti Hb core total were positive as well. Shock number 3!!
HBVDNA came back as non detectable, so it seems that I had it and I cleared it. Hep C on the other hand showed as a viral load of 197,751 IU/ml or a 5.03log (is this high or low?) , genotype 1b, IL-28B is CT. Fibroscan shows 10.2 kPa
My research so far indicated that hep C could have been a reason for Lymphoma and apparently there is mainly for genotype 2 and 3. But I insisted and my specialist asked for a cryoglobulinemia test. This is the one which if positive is proving the connection between Lymphoma and Hep C
Guess what? Is positive. Problem is that I do have a pre cirhotic liver with a genotype in which Interferon and Ribavain success rate is only 30%. To double the success rate I could take Telaprovir but unfortunately it is not funded yet, maybe in 12-18 months. If treatment is sucessful in hep c patients 75-80% of lymphoma cases are going into remission
I just got the Heptech products today and I hope that they will help reversing the fibrosis
I will be starting LDN 3mg next week
I am taking Kombucha and I am on a vegetarian and raw diet. I never did or do drink or do drugs.
I started couselling with someone specialised in body/mind system (he is an Imunology professor and a Psichiatrist)
On top of that I am doing the Budwig Diet (lots of low fat cottage cheese and flax seed oil)
2 days ago I have been offered by my Haematologist local radiation and Rituximab plus a light chemiotherapyc. I do not really see the point of that or the benefit so for now I said that I prefer to take my chances with treating the hep c.
So next Tue I will see my Liver Specialist, it is down to him now to come up with the best option.
If not for Lymphoma I would wait and take only the heptech products in the hope that fibrosis will be reversed. University of Auckland had succesful trials with non interferon theraphy having genotype 2 and 3 cured in 12 weeks. But not the 1 :(
Beside, I do not suit any trial. But I know that my specialist is world renowed as I have been told so if there is anything available he would know of it.
So in the mean time if I do start the Interferon my thinking is: LDN would help to lower the viral load (which is already low) and also has a good chance to put the lymphoma in remission. That will be the best time to start interferon probably as I heard that it works better on low viral load. Interferon was also used in the past as a lymphoma tretment.
The only thing is that I will have to put up with that for 48 weeks (that is if it working and I pass the 12 weeks with a good result)
Please if you do have any suggestions, comments let me know. I cannot cope anymore with all this. I have done so much research so in the last 2 months that I am not sure what is what anymore.
I would like to hear from anyone else trying LDN and Heptech and what their results and experience is
I would also like to hear from anyone who has a combo of hep c and lymphoma.
Hi Diana, and welcome to the forum. I'm afraid I can't answer any of your specific questions, but I was disturbed to see that it's been 12 hours since you posted and you hadn't yet gotten any replies. People usually respond more quickly, but you are asking about stuff I suspect not many of us know about. Most of us live in countries where the protease inhibitors (Teleprivir and Boceprivir) have been in general use for over a year now, and a large number of us are currently taking them. I have never even heard of LDN or Heptech, though I'm sure there will be others here with knowledge of them, and although I am aware of links between HCV and lymphoma, I don't know if any ofyour members here have experienced it. I just wanted to try to give you some kind of response so you wouldn't feel alone in the wilderness here. Hang in there and I'm sure you will get a more helpful response before too long!
Telaprovir is not funded yet in New Zealand, it will be in another 12 months :(.
LDN is Low Dose Naltrexone, it is usually used in Alcohol and Opioids addictions. As a result of taking it Endorphins levels are being raised in the body. That apears to lower a lot the viral load on hep C and also to put cancers in remission. So my hope is that is that at that point Interferon might have a better chance. I am starting LDN next week
Heptech is a canadian company having a natural product helping to regress liver fibrosis. The company's founder is leaving with hep B and hep C but he managed to improve the health of his liver - check their website. I am starting their product today
I am also considering misletoe extract (Iscador) - but I have not found any reference from any of you
I really hope that I can learn from your experiences on taking interferon, telaprovir, ribavirin.
Maybe I should as shorter and more targeted questions:)
Welcome to the forum. I don't know anything about the products you mentioned so I cannot comment on them.
It is unfortunate that the Protease Inhibitors are not yet approved in New Zealand. Is there any way you could get into a study or some special program so you can get the currently recommended treatment for Genotype 1??? (Interferon, Ribavirin, and a Protease Inhibitor)
Your viral load is actually on the low side. It would not be considered high. However, viral loads do fluctuate.
I don't know anything about the fibroscan results. Have you had a liver biopsy or did they do a fibroscan instead? The condition of my liver would probably influence my decision on how fast to treat.
I don't know enough about Lymphoma to know exactly where you are in terms of the progression of Lymphoma. I think, if it was me, that would influence my decision. I do know there was a man who recently posted who had been successfully treated for Lymphoma and is now going to treat for Hep C. I will try to find his thread.
My fibroscan result of 10.2 kPA is a svere fibrosis but not cirhosis. Cirhosis is 12.5 kPa and over. Normal liver is a 3-4 kPa. So I guess it is a F3. In New Zealand Fibroscan is the norm, they are not doing liver biopsies anymore.
Re Protease Inhibitors, I could probably apply for some compasionate supply with the Drug company. Otherwise I will have to wait 12 months untill will be funded here. I am not really suitable for a trial since I have Lymphoma as well.
When I was diagnosed with hep C and decompensated cirrhosis ( ESLD)
I sought an herbal alternative to interferon treatment.
I found an herbalist who was also an MD.
She told me she could help me with the symptoms of hep C, and the side effects of interferon treatment, if I chose to do it but no supplement would rid me of hep C. She never claimed any of the herbs and supplements would change my condition.
I really doubt you are going to reverse your fibrosis without getting rid of what's causing it, hepatitis C.
You may, at best, be able to stop it from progressing.
No diet will change your fibrosis though you can help your liver by eating as organically as possible, avoiding processed foods and inhaling noxious fumes.Obviously no alcohol.
As all things are possible, please let us know how things progress.
You are the only person who knows all of your circumstances and you are the only person who can make the decision of when to treat the Hep C and also when to treat the Lymphoma. The input and opinions of your oncologist and your hepatologist would also assist in the decision making process.
If it was me, and I was at Stage 3 fibrosis, I would treat sooner rather than later. People with Stage 4 (cirrhosis) are more difficult to treat, have more potential medical complications while treating, and have a lower SVR rate. Better to treat before one gets to Stage 4.
Perhaps your doctors could help you in applying for a compassionate supply of medication.
This was posted by YoDennis a few weeks ago. However, I do not know if it applies to people outside of the US. It never hurts to contact them and ask.
"I can tell you first hand that genetch who is providing me my Interferon and Ribo (lost my job 6 months into therapy and after I had finished my Incivek with an EVR) are expeditious, and amazingly easy to communicate with and coordinate .....Essentially if you have no insurance and you make less than U.S. 100,000 and a doctor signs off via fax you're going to get the drugs delivered right to your door with no financial obligation!....
Incivek (vertex): http://www.natap.org/2011/HCV/Telaprevir_03.htm Boceprevir: http://www.natap.org/2011/HCV/Boceprevir_01.htm
Pegasys (will get you Ribo too): http://www.natap.org/2011/HCV/Boceprevir_02.htm
It is certainly worth attempting to get the drugs free or cheaper and be able to treat soon.
I am on vegetarian and raw food diet, smoothies and veggie juices, I never drink alcohol, so that part is covered :)
I found a Canadian company, Heptech, saying that their product can reverse fibrosis. I think I will start a thread just to see if anyone actually tried them. I have all the intention to treat the hep C as soon as I can get the third drug. But if in the mean time I can reverse some damage, I would give it a try if it is true.
I have the challenge of the Lymphoma as well, so I just wanna make sure that I have all my ducks in a row. It is amazing how many mistakes even doctors can make. I am having now copies from every singer test or scan and I am taking notes everytime I go and see a doctor. On top of that, on any statement I am asking for their reasoning. Even with the best of intentions, doctors are humans and they can get it wrong sometimes. My goals is to have a long and happy life so I am only trying to make that happen
Unfortunately since supplements are not approved by mainstream medicine, its hard to find reliable research to figure out which ones work and which ones don't.
If I recall correctly, heptech was began by a guy who used to be on this forum. He seemed very knowledgeable.
Heptech does say they can reverse fibrosis but they cannot stop your hep C which is causing your fibrosis.
Of course, once you are free of hep C your liver will naturally heal itself and the fibrosis will disappear with time. Our livers have wonderful regenerative abilities.
I took lots of supplements prior to my transplant,and can't say whether they worked or not. It's often hard to tell.
From the heptech web site:
Are your products a cure for Hepatitis C?
No, HepTech is not a cure for hepatitis. It will not eliminate the virus. However, it will ameliorate the symptoms of hepatitis and effectively manage the triggers of fibrosis generation.
What this says to me, is the product may help stop further fibrosis progression.
Hep C is causing the fibrosis. If these products work, the best you'll be able to do ( in my opinion ) is not get worse.
It's like running on a conveyor belt going in the opposite direction. You simply stay in one place.
You have a lot on your plate, and I don't want you to expect results which may not be feasible.
Doctors are indeed human and it is our health and our bodies so ultimately, our decisions.
I wish you the best of success in achieving your goal.
Please do write back and let us know how it all turns out.
I am very much aware that heptech will not get rid of the virus. But I would like to find out from other if indeed reversed their fibrosis. Yes it is true that once SVR is achieved the liver will heal, but from what I have been told it is taking 5-10 years. If I am getting it right, it seems that the heptech achieves that in a much shorter time. That is if I consider the Fibroscan values they have listed on their website.
I will post this question by itself because I really want to find out how many (if any) other have tried it. I read the claims but wnat some evidence so I can make up my mind
Way to go, Diana! I think you have the best attitude possible for getting the most out of your medical care. Many of us take far too long to realize that even the best of doctors are still only human, and as humans they can make mistakes. I'd like to second those encouraging you to look at alternative methods of getting the protease inhibitors paid for, only because your liver condition is uncomfortably close to cirrhosis. I'm currently on week 36 of 48 of triple tx, with Incivek. This is mt third time treating, but the first time with Incivek. I do have cirrhosis now and I can attest to the tx being much harder as a result – and with lower odds of SVR too. It gets pretty depressing whenever I do allow myself to face the possibility that although I'm busting my butt, going through a lot of difficulties, and pretty much putting my life on hold for a whole year while I go through this tx, the virus might return again after tx is over. The virus is harder to eliminate from a cirrhotic liver, and I think all of is with cirrhosis are particularly eager to encourage others to treat before their disease can progress that far.
If you can't find a way to get the drugs sooner, then I agree that slowing down the progression of fibrosis is a very good idea while you are waiting for an effective treatment. If Heptech is owned or managed by the same individual who used to participate in this forum as "Hepatitis Researcher", then I would have much more confidence in those products than in most – that individual was very knowledgeable and seemed to have high ethical standards as well. However, I don't know for sure if it is the same person, so study the products carefully. I'm really hoping you can beat both of your challenging diseases!
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