Genotype 2 Newbie to Group

[marshajane]

Hi friends, I have all but tried to ignore hepatitis. I've gone through significant difficulties in my life and didn't think I could handle the painful drugs that have been available in the past. My body is so sensitive that surviving strong drugs would take a miracle. I had lots of blood transfusions in 1988, and maybe fifteen years later my viral load was 3 million (quite awhile back).

I am having some health issues that maybe ultimately be caused by the hepatitis. Drs. don't usually look because my liver enzymes are still normal. In the past I was too afraid to have a biopsy. I think I'm ready.

I'm reading wonderful things about Harvoni, but isn't Harvoni for genotype 1? Are there stats on genotype 2, or is something else used?

FYI, I was hit by a bus as a pedestrian in 1988, and my recovery was difficult. Since that time I've had years of chronic headaches and problems with balancing my use of pain killers (and having to withdraw). I don't want to suffer anymore. :-(

I headaches of my history have finally calmed down, and I have a chance of a real life at age 67 except that I'm exhausted all the time. And I've developed a shortness of breath. I may have something that s not hep C related but it would help me to understand what my options might be for genotype 2.

I am trying to find some light at the end of this tunnel. Thanks.

Marsha

[KAL]

hi Marsha , welcome to the fourm ! this is a great place to share experience and learn from others that are going thru , or been thru treatment , were all in the same boat here .

im also geno type 2 ,  type 2 is less common , type 1 is about 80% of all hep c in the US .

yes there is treatment , im on sovaldi and ribavirin for 16 weeks , .....if you have a doctor he will guide you thru all the tests to determine the condition of your liver  , i have cirrhosis so it's 16 weeks , no cirrhosis is 12 weeks i think . if you dont have insurance there are trials you may be eligible for  , there are others here that know more about that and can giude you .

the virus was undetectable at my 4 week test , im at week 14 now and feel much better than before treatment , there are some side effects from the ribavirin but  the improvement in my health without the the hep c attacking my liver way overshadows any side effects , ......i can gladly say , for me , this treatment has been easy .

al the best , good luck !...........K

[marshajane]

Hi Kal, I'm happy to hear that you're doing so well.

I'd thought that Ribavarin was one of the more difficult chemicals to tolerate. I'm also disappointed the we ”2Bs" are not suited for Harvoni"

[KimInTheForest]

Welcome to the forums marshajane! And Kal, that's great that you are in the home stretch - just 2 more weeks to go - and that you're feeling so much better than before tx.

Marshajane - I am 3a and just finished 12 weeks of harvoni+ribavirin, which I got through a clinical trial, since it is not yet approved from my geno. I think I am cured now, but my final blood test in october will confirm.

anyway, about ribavirin - yes it is one of the bad old drugs. HOWEVER… when it is taken with the new oral-all medications and NOT with interferon the issues it causes are greatly reduced. Quite a few of us here on these forums are taking (or have finished taking) one of the new miracle drugs with ribavirin. Pretty much everyone is able to finish the all-oral treatments, even with ribavirin involved. This was not the case with interferon and ribavirin, where many people had to stop mid-treatment. i did not have significant problems during my 12 weeks (although i was very glad to reach the end).

ribavirin causes some degree of hemolytic anemia in pretty much everyone. your hemoglobin and red blood cells will decrease while on ribavirin, so you will have less stamina and get out of breath easily. but 12 weeks is quite doable. the problem does not develop immediately. and you're ridding yourself of Hep C - so a pretty good deal in my opinion.

If you don't have cirrhosis, then I believe geno 2 gets sovaldi+riba for 12 weeks, as Kal said. Extremely high cure rate. So you are pretty much guaranteed of getting cured if you go that route. There may be other options. And clinical trials may be a possibility for getting treatments without ribavirin.

all the best to you,
kim

[KAL]

basically , harvoni(400mg sofosbuvir , 90mg ledipasvir )   is  sovaldi(400mg sofosbuvir)...............for me , the ribavirin was easily manageable  , if you have skin issues avoid the sun as much as possible and use sunblock when you go out , drink lots of water , eat healthy foods (read labels !)........
have you had a biopsy/ultrasound or fibrosure to indicate your liver condition?   

[KimInTheForest]

Here is an AbbVie clinical trial currently recruiting people with Geno 2 or 3 for a couple of new drugs. It's a US trial seeking 350 participants all over the country. Lots of study centres for this one.

https://clinicaltrials.gov/ct2/show/NCT02243293

kim

[jimhd2005]

I'm also new to this page. I have hep-c geno type 2. Was hoping for Harvoni treatment but the Doc said not with type 2. I'm waiting on my meds as he has prescribed Sovaldi + ribavirin for 12 weeks. Was wanting to know the benefits and side effects of this combination. Any info would be greatly appreciated. 

[KimInTheForest]

I'm also new to this page. I have hep-c geno type 2. Was hoping for Harvoni treatment but the Doc said not with type 2. I'm waiting on my meds as he has prescribed Sovaldi + ribavirin for 12 weeks. Was wanting to know the benefits and side effects of this combination. Any info would be greatly appreciated. 

Welcome to the forums, Jim! And congrats on getting approved for treatment.

I recently completed 12 weeks of Harvoni+ribavirin in July. I found treatment pretty easy.

Your main issue in terms of side effects will be with the ribavirin. It induces hemolytic anemia - your red blood cells blow up faster than your bone marrow can create new ones. So you can end up feeling fatigued or out of breath due to sub-optimal level of hemoglobin (oxygen) in your blood. Don't push yourself if you get to that stage. Just do what you can. The higher your red blood cells and hemoglobin are when you start treatment, the better off you will be because they can drop quite a ways and you will still be in the normal zone. The anemia thing is purely temporary and will begin to reverse itself once treatment ends. 12 weeks is not very long, so it's not really something to worry about - just be aware of. You may not have your full energy by end of treatment.

Other than that, side effects tend to be a little bit different for everyone. Drink plenty of water during treatment. It helps to lessen side effects. Eat as well as you can. Keep your body healthy. Be kind to yourself. Think positive. Visualize all those virus particles meeting their end and leaving your body. Dead virus exits through the bowel, so keep yourself regular.

Best of luck!
kim

[marshajane]

I am disappointed. When I first visited here, I had a question on some neck nodes. An ENT doctor did a needle aspiration without success so then he did actually cut one of the nodes out. Lo and behold, it is positive for lymphoma.

My original doctor is an internist. The ENT said he'd send the info to the internist with a couple of cancer doctors, and he gave me these names as well. He kept saying not to worry. Lymphoma isn't all that bad.

Our conversation was over the phone, and I was trying to digest what he was saying as my heart pounded. I thought he said the lymphoma is a 'D' but we'll call it a 'B' until we know more. That makes no sense.

Meanwhile, I called my internist, and I couldn't get in right away. Plus, I'm supposed to see the liver doctor for the first time this Thursday.

If this is a fast-acting lymphoma, nobody seems too worried. On the other hand if I'd done this a year ago, I could have gone through the hepatitis treatment first, and I would have come out much better. If this is a slow-acting lymphoma, I'd like to do the hepatitis treatment first.

I have read that lots of people with hepatitis end up with cancer and that it is more often genotype 2 that will end up with lymphoma.

There are some other lymph nodes that show up in my chest x-ray and I believe there is a couple in my lower pelvic area but in the last year I had shingles and I had my gall bladder removed. Plus, I've had hepC since 1988. I'm hoping all these other nodes are not lymphoma, too, but nobody seems concerned. I see my internist next week.

Does anyone have something logical to add? Thanks.
Marsha

[KimInTheForest]

Hi Marsha. There are many different types of lymphoma. More than 40, I believe. And certain lymphomas (B-cell non-Hodgkins lymphomas) are very closely associated with chronic Hepatitis C. The good news about those is that they usually disappear once the Hep C virus is eliminated through anti-viral treatment. In fact, curing the Hep C is the recommended "treatment" for those lymphomas because it is far easier on the body than chemo-therapy.

Here is one article about that. But there are others online if you search for "lymphoma and Hepatitis C" :

http://www.ncbi.nlm.nih.gov/pubmed/23542089

So see if you can move forward with your Hep C treatment. That may resolve your lymphoma.

best,
kim

[marshajane]

Kim,   

I've already read several of these articles. I will read this one gladly. But do you think that doctors are following the lead, or is this just wishful thinking? I see my hepatitis doctor for the first time this Thursday. I would be so relieved if we did it that way.

[KimInTheForest]

If your Hep doctor does not mention this, I think you would be wise to bring it up. I don't think we can count on our doctors, even our specialists, to be up on all the literature. I have many times found that I am more informed and more current on some specific development in medicine than my doctors are… because my life depends on it, and because I can spend lots of time reading recent journal articles and studies on subjects that are crucial to me. They can't.

best of luck marsha!
kim

[MelHu]

Hi Marsha
I also have GT 2b. My complication though is multiple myeloma. I'm in the early stages of it. My oncologist doesn't think it's related to the Hep C.  When I started TX I was told that Sovaldi/RIBA was the only TX option in June for my GT. Now I see that Gillead  has a new treatment coming for GT 1-6?  I believe. I too am very sensitive to meds. I dreaded the thought of the RIBA because I was told if you didn't eat with it, it would instantly hit you.  I surprised myself because not once did I feel any ill-effects from it. Just remember to eat and drink lots of water before,during and all day. That's the game changer for RIBA.  Only a few times I felt like it was erupting in my stomach but I ate fruits to help it. So hope you have started TX because we are smack dab in the middle of the biggest miracle for anyone with this dreaded demon. I've finished TX on 9/19/15 with <20 IU/ml "detected-not quantifiable". Hopefully by my 1 month labs I will be "undetected".   I am hopeful. If you haven't started your journey then you've got a big decision ahead BUT if you have then "go for broke!!" And good luck to you.

[marshajane]

Hi friends. This forum has helped to guide me.

Here's my update. I am frustrated. I am diagnosed with lymphoma. The more I read, the more sure I am that the hep C genotype 2 caused the lymphoma. When I went to see the oncologist for the first time, I sobbed through my whole visit, in the car before the visit, in the car after the visit. After listening to the doctor, I was sure he'd want to push me into chemotherapy but he said we were going to watch the lymphoma and wait. Good answer!

He sent me back to the Liver doctor; she's a Contagious Disease doctor. The oncologist released me for liver treatment. He'd told me that he knew of the connection between the two diseases. He couldn't promise me that curing the hep C would cure the lymphoma.The liver doctor knew nothing about the Hep C/lymphoma connection. I found two internet articles and sent them to the liver doctor.

Here's the problem. I can barely treat myself well as a cancer patient because I have no appetite and I'm nervous with other hep C problems. Actually, the symptoms of these two things overlap a lot. I'm exhausted.

I finally got some pertinent tests from the Liver doctor. My viral load is over 5 Million, closer to 6 Million. I'll post the exact figure when I fill out my info section down below. My liver and spleen are both swollen but nothing outrageous shows up in my liver ultrasound. The doctor asked me if I wanted a liver biopsy. I said no. She gave me a blood test to measure something. Liver damage? Possible Cirrhosis? Cancer. I'm not sure. She doesn't think I'll have difficulty getting my insurance to cover me due to my high viral load and I'm not sure what else.

Here's the problem. She cannot give me Ribavirin because I'm already anemic. It's difficult to take iron because it's constipating and my stomach isn't friendly these days. My doctor has never treated someone with both hepatitis C and lymphoma. So with these two issues, she wants me to see a team of doctors. I forgot where they're from. UCSF? She has contacted them but says I might not get to see them until after the holidays. This is a long time to wait for someone who feels like crap.

Meanwhile, my oncologist says we can hold off on lymphoma treatment if I don't sweat at night, if I don't lose weight, and I forget the third one. Since he said this, I can't help but sweat. I'd already lost weight and I'm still losing weight. I see him on the 10th.

I'd planned to do an alkaline diet to shake the cancer but my stomach isn't agreeing with many juices. Plus, I need lots of iron which comes from veggies but it's easier to utilize from meat. Too much meat isn't great for cancer.

Someone please, just give me my treatment so I can be on my way and feel better. It looks like I'm going to move. I'm living in San Joaguin Valley, CA, and I think I'm going to sell my house and move next door or very close to my son so he can fatten me up. He's a cook at a hospital, and he said, "This is the type of cooking I do, for patients with special requirements."

Meanwhile, I've lost more weight. A girlfriend has been staying with me maybe three days a week because I've been going bonkers spending too much time alone. She helps me clean because I'm tired. I seem to eat more when I'm not fixated on being sick.

I think a larger selection of doctors may help me get treated faster if I find a new doctor in Pleasanton or thereabouts.

Any thoughts? Thank you.

[KimInTheForest]

Hi Marsha. Sorry to hear about your troubles in all this.

Regarding the problem with ribavirin and your existing anemia - As a Genotype 2 person you can also be treated with Sovaldi+Daklinza for 12 weeks. So you can avoid the ribavirin altogether. In fact, Sovaldi+Daklinza is one of the recommended treatments for Geno 2 people. Chart is of recommended treatments is here: http://www.hepmag.com/articles/2512_18756.shtml

Getting insurance to cover it could be a problem, depending on your insurance company and their rules. But both of those drugs are now available generically from overseas, and for a fraction of their price in North America. An increasing number of Hep C patients are getting their drugs that way.

good luck!
kim