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29837 tn?1414534648

Back again - sort of....

Went through 5 months of triple therapy with Victrelis. After 5 months I went from 2.3 million to 300. However, that was at week 16 of Victrelis. The protocol was to be undetectable at week 12. So now I wait for the non-Interferon drugs.

I have to say the treatment was tolerable until the last 2 weeks. Then it hit the fan. About a month after quitting, something extraordinary happened. I lost 22 lbs in one month. Dr. Gish was concerned and said most was muscle mass due to the non-proliferation of protein enzymes by the liver. So three months now after quitting, I am still only only one pound heavier, while forcing myself to eat more. This is a concern to be sure. I feel nauseated at times and with a lack of energy. I lost 2/3 of my curly full head of hair, which is now straight. Lost all the hair on my legs.

I just hope the future Heppies appreciate the fact that us Guinea pigs are going through this to make it easier for them one day, when the cure will eventually be one pill daily for a month...

Magnum
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Avatar universal
Good to see you back Magnum,altho wish the news had of been better.
Take care of yourself  and yes   the -one-a -day  for a month......... .
Will

Helpful - 0
Avatar universal
Ahh, I'm new on this Forum, but have read many posts of yours, since I started trying to cure my Hep C, about half a year ago.
   I did see a YouTube video, where anopther guy said he lost alot of weight after an unsuccessful tx, but it was just SOC.
   I'm on triple tx, with the Victrelis, week 9 (and 3 days) and I can tell my teeth are gonna be goners..I cant tste it and feel it. I still dont have the hair loss thing yet, do you remember what week yours started to thin? I have heard "12 weeks"...but I dont dare redye mine...so I have grey roots, to add to my anemic complexion~
   I'm hoping your hair will get thicker, over time, and that the 2nd generation PI's and other new meds, will be ready, even quicker then the Doctors are saying. Mine is saying "3~5" yrs, but that's not quick enough~ so many people need them now
Helpful - 0
Avatar universal
  Sorry the treatment was not sucsessful.
Helpful - 0
446474 tn?1446347682
"I feel nauseated at times and with a lack of energy".
Have you tried any drugs for your nausea? Does anything seem to help.

"I lost 2/3 of my curly full head of hair, which is now straight. Lost all the hair on my legs".
How are your labs? Anything out of the ordinary? Could the treatment have been stressful on your liver (fatigue, nausea) and aggravated your liver? Or does it seem to be a reaction to treatment?
What does Gish say about these developments?

Hang in their buddy!

Hector
Helpful - 0
1711722 tn?1356487554
Hi.  Sorry to hear this Magnum.  I'm curious then.  Have you had your VL checked since then to see where you are now??  I ask because I was told that it is a great achievement to have your VL go down significantly, as it takes stress off your liver.  But I'm not sure that holds true if the numbers go back up.

Blessings,
Bee
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87972 tn?1322661239
Hi Magnum,

We haven’t seen you around in quite a while; sorry to hear of these latest developments. I have to believe Gish ‘n company checked your thyroid, although sometimes that’s responsible for alopecia (hair loss). Is your cirrhosis still well compensated?

My sincere best wishes to you; I hope the wait for better treatment modalities is short. Be well,

--Bill
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Avatar universal
Well, sorry to hear about outcome of this last go-around.

I'm glad that it was a shorter treatment and that you came close to making undetectable.  There are several great new treatments coming and I believe that things will continue to shorter, easier and more effective.  
.....I know, the broken record.  
EASL is only about a week away and you will see proof of what some of these treatments will hold.

Very sorry that you didn't make it.  Still sounds as though it was easier than the infergen, am I remembering correctly?  Next stop may be no interferon.

Wishing you a speedy recovery.

best,
willy
Helpful - 0
1652596 tn?1342011626
so sorry to hear your news.  i wish you had better results.  i hope everything works out for you.  sending you prayers and hugs.  you deserve it.  belle
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29837 tn?1414534648
Thanks to everyone for your concern. Dr. Gish classified me as having compensated Cirrhosis at MELD 6, therefore I’m not a candidate for a transplant. I went from a naked weight of 192 at 6'0" before treatment to now 170 in about 6 weeks. I look like a refugee. I did a performance tonight (entertained and sang for 2 hrs.), and it went well. I’m mystified at this weight loss which didn’t happen until about a month after I stopped treatment.

Dr. Gish said liver functions are normal, but did not give me a definitive answer as to the weight loss, but rather, a guess. I have been through 4 prior treatment failures and never lost weight. I have to say that in my own opinion, Victrelis may be responsible.

Insomnia is still present. I’ve had much more pain in my lower back and ankle after treatment. I weigh what I weighed 40 years ago. I was taking 30mg of Oxycodone daily for the pain for about 2 weeks. Not wanting to become addicted, I’m on my third day of detoxifying, and it is no fun. Thank god and mother nature for medicinal marijuana.

So in closing, I will stick around and post as to what the progression or regression of my condition is going to be, if nothing else, to add fodder to one’s thinking about this brutal treatment. Stay well everyone...

Magnum
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Avatar universal
Well, a big hug, from one guinea-pig, to another. And good for you, to go out and do a 2 hr performance, unbelievable! xo
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1652596 tn?1342011626
your strength is amazing.  i can't believe you did a 2 hr performance.  you rock!  take care.  belle
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Avatar universal
Hi Magnum,

Sorry to hear of your failed treatment. I know how heartbreaking it is! I had a breakthur at week 36. So hard to believe treatment failed when it makes you feel so crappy. I still feel crappy and been off for a little over 2 weeks.
I see you go to doctor Gish. How do you like him? My liver guy has referred me to him. Just waiting for my appointment. I was told he's running trials on hard to treat patients. well sorry again and take care!


Linda
Helpful - 0
29837 tn?1414534648
As an addendum, three months after stopping treatment, my platelets went from a dangerous low of 24 to 72 now. However, my ALT went from a normal range during treatment to now at a high of 124. The AST went from 58 under treatment to a high now of 136. Something is causing inflamation of the liver. I take fish oil, 2000iu vitamin D, Super-B Complex, multi-vitamin with no iron and Milk Thistle daily.

The nausea didn’t happen until I stopped the Oxycodone pain pills. The way my Gastro explained addiction is that there are two types. Mental and physical. I’m going through the physical withdrawal of Oxycodone. Although it’s been said Oxycodone won’t affect the liver, again I feel it’s subjective to each individual. The liver swelling could possibly be the result of the Oxycodone.

Energy level is low now and the pain level has been exacerbated by treatment. If your muscle mass is atrophied, then the muscles holding up your skeletal frame are not supporting the framework properly. Therefore the pain is amplified, especially in the lower back. Not allowed to take Tylenol, Ibuprofen and any anti-inflamatories.

There is also a double-edge sword in the protein benefit. In other words, I’m to eat more protein. Fish, meant, nuts, etc.. However, too much protein is hard on the liver. So round and round we go again with theories. I was also told to stop drinking coffee. I will have a thyroid test done very soon.

The mind over matter is very important at this juncture. To cave in is to end all hope. To push forward regardless of the pain, nausea, Insomnia, is the way I choose to go. There is no easy way for anyone on these brutal treatments. However, those that have cleared through paying the price of suffering, can now lead a better life. By the way, I asked Dr. Gish if after I’m finally cleared if I can have a glass of wine daily. His answer..... NO!

Magnum
Helpful - 0
1856494 tn?1340542614
Mind over matter. . .  Magnum you are a force of nature.  I am really stumped for you inspite of your valiance.  Damn.  You fought so very hard.  This is a hell of a set back.  First time I did SOC, I was overdosing on Riba and lost 30 lbs.  I felt very anorexic.  This was a very difficult task to replenish the padding our bodies need for mere sitting and functioning.  I do hope you can regain your strength soon.  Your attitude is amazing and you inspire me.  My heart goes out to you and your family.
Helpful - 0
223152 tn?1346978371
Unbelievable - this 22# loss after the end of treatment.  But I do think the side effects of Victrelis are nothing to scoff about and perhaps this is a ramification of it.  

"Dr. Gish was concerned and said most was muscle mass due to the non-proliferation of protein enzymes by the liver"

Does this mean the liver is preventing the develpment of muscle mass? I tried some googling and so far have only come up with age-related muscle mass.  The solution seems to be protein plus excercise.  Mag, I know you swam a mile a day for a good part of your treatment so I know your muscle mass was good.  Have you been able to get back to that?  When did you stop excercising?  And why would the muscle decrease happen after tx?  This is so odd to me.

I personally can feel an enormous decrease in muscle mass.  My excercise ended early in treatment this time and other than weekly Tai Chi (which totally wipes me out) I do nothing.  I still have 14 weeks of Vic to go and wonder how that much more inactivity is going to impact me.  Yet I find myself unable to get up and walk like I should.

You fought so hard to get on the PIs before they hit the market and still had to wait until they did.  What is the answer?  I am glad to hear you are preforming again.

bean  



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Avatar universal
That's good news, about your platelets rising, but concerning, about your enzymes elevating.
   I had read that peanut-oil is good for raising platelets, so I buy that peanut-butter with the oil on the top, and heat up a fresh tortilla, on the burner, and put a big, oily hunk of P.B. in the middle, it's not that bad, once it's heated.
   Would you consider participating in a research study, that is using the new, second generation PI's, or that other one, Alosprivir? (or something, it's not a PI, but an anti-viral)
   Some of the newer studies just have letters and numbers, instead of a name, for the new chemicals. I was discluded from these studies for my AST/ALT being too high, at the time (400/500) and having elevated Bilirubin, but I had heard they passed a law, this January, making it harder for the research programs to disclude, by the labs~  I can research this for you, if you are interested in new studies, just let me know, Magnum~
   Like you said, it's good to keep standing, keep  performing, keep fighting, and keep up the support system
Helpful - 0
163305 tn?1333668571
Did Gish tell you to stop drinking coffee ? There are lots of studies supporting coffee drinking as being beneficial to the liver and to put it simply, hep C doesn't like coffee.

When I was cirrhotic like you, I ate no red meat~ sticking to chicken and fish. One doctor told me to eat lots of tofu and egg whites to increase my albumin levels.

For pain, massage helps. Dr. Gish probably wouldn't go for using cannabis but maybe if you used the brownies? I found they took that deep muscle pain away better than anything else.

Wishing you the best~
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29837 tn?1414534648
Dr. Gish is world renowned and is a specialist of only the liver. He is also chief of liver transplantation for the West Coast and a professor at the University at San Diego, CA. I've been seeing him for about 10 years when he comes to Las Vegas once a month. He has a license to practice in California and Nevada only.

He is on top of all the new research being done. I put a lot of faith on his prognosis. He checks you out physically at every visit as opposed to just asking questions. His expertise is unquestionable in my opinion.

I highly recommend you see him. You'll find him a very serious man with nothing on his mind except your well being when you have a visit with him. A no nonsense practitioner that doesn't let anything escape his realm of knowledge. Good luck and stay well...

Magnum
Helpful - 0
1840891 tn?1431547793
Im so sorry to hear of your tx failure, but wanted to thank you for posting your update, and also for your extensive work as a guinea pig for future HCV tx. I'm also cirrhotic, also compensated, and am currently on triple tx with Incivek. Rough sides, but so far it seems to be working. I'm on week 25/48 and have been UND since week 8, though I still worry a lot about breakthrough and/or relapse, so I find it quite painful to envision what you are going through. I wish you all the best in getting your weight loss under control and getting onto a more successful tx in the near future.
-Saelon
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1491755 tn?1333201362
Great thread Magnum thanks for sharing your story.  I to feel from a loss of muscle mass just feel weaker post tx, and have more fat.  I've never had any fat around my gut post tx I do very weird stuff.
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Avatar universal
Thanks Magnum!

I was thinking he was good, when I got his card with his e-mail address and cell phone number on it. My referring doc doesn"t like to answer questions so it would be nice to have a caring, knowlegable  doc. I look foward to seeing him when he's in Las Vegas! Take care, and  the next drug will help us both!

Linda
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Avatar universal
That is great that you have a Doctor that you are confident with~
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190885 tn?1333025891
good luck! maybe make sure to keep up on the water intake for good energy......billy
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Avatar universal
I am very sorry to learn of your recent developments.
There is nothing I can say to you other than I know that you will keep hope alive. That's just the way you are and I admire you greatly. You are truly inspirational Magnum.

Good luck,
Mike
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