Hepatitis Forums
Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: mauilance on November 04, 2015, 01:01:20 pm
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I have just completed 24 weeks on Harvoni and it worked, but the side effects are more than is listed in the manufacturers advice.
I must admit this is much more bearable than the 72 weeks of Interferon and Ribavirin they put me through in 2002-3. That was pure hell for a year and a half and it didn't work.
Harvoni was much more subtle in it's side effects. I think the tiredness is the worst effect. At times I would start yawning uncontrollably and then sink into a sleepy state and eventually take a nap if I couldn't keep awake. If it was middle of the day that I got hit, I'd nap. If it was at night, I'd try not to go to sleep till bedtime. These "spells" only lasted for 1 ½ hours and then I would come out of them. It felt like walking through mud some times and it was easily identified as a side effect of the drug.
I also think it changed my Circadian rythm. I started waking up at 4:00 am each morning which I never did before. When I would awake, I was fully conscious and could not go back to sleep. I also found that I was a bit withdrawn and didn't want to do much. Haven't been out to dinner in 6 months.
For all it's side effects, the Hep C has been undetected in my system for the last 3 months. My liver function has gone back to normal after having an ALT of 310 and AST of 330. I'm now at 12 and 17. That's a miracle.
I just had an ultrasound and for the first time something showed up. There was nothing there 6 months ago when I started the therapy, however my AFP is normal. I have to go for an MRI to further investigate the abnormality. I'll let you know the results when I get the test.
If you are lucky enough to get this drug, I'd say take it every day and take it in the evening. I started to see that the time you dose has nothing to do with the time you would get the "spells", they came at random times.
Best of luck and I hope you get the results I have obtained.
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Welcome, mauilance. Congratulations on your three months of undetected and that amazing drop in ALT and AST -- you started higher than me and ended up lower!
I cannot tell how much the Harvoni has affected my erratic energy levels, because my rhythm hasn't been circadian for many years. But even now, 5 weeks post-EOT, I experience "spells" like those you describe. Compared to before Tx, though, a shorter nap usually revives me.
Yes, please let us know the MRI results, and good luck!
Gnatty
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Thanks for the info. I look forward to getting my energy back one day. I too have been so tired the past 17 years I don't remember what it's like to have a normal energy level.
I have had some big swelling in my liver since I got off Harvoni 3 days ago and they have moved up my MRI to tomorrow. The doc told me to take Tylenol, which I thought wasn't good for the liver, but it has helped the pain. The swelling hasn't gone down though. All I can do is hope the MRI doesn't show anything too bad. I'll let you know.
Thanks for listening. Hope you're feeling better each day.
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Doctors have told me up to 2,000 mg/day of Tylenol are okay for my liver and kidneys (which are also damaged).
You've had an unusually complicated Harvoni experience. Glad the AFP was normal; hope tomorrow's MRI is, too.
. . . Thanks for listening. Hope you're feeling better each day.
Any time. I'm sure you'll pay it forward. Hope you'll soon have less swelling and more energy.
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Had my MRI yesterday and today my Doctor called and asked me a lot of questions about my liver pain during Harvoni treatment and a lot of other questions before he told me I have a 7 cm mass on my liver and another on the back of my liver and 2 others in my stomach. I have to go for a catscan tomorrow to see where it came from. He can't quite believe something that large could grow in 6 months. There was nothing on my ultrasound 6 months ago. He says it is inoperable. The pain will only get worse. Just my luck, get rid of Hep C and then get terminal cancer. I hope it wasn't the Harvoni that did this to me, but I don't believe in co-incidences. I wouldn't wish this on anyone. 6 months maybe.
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mauilance, how I wish I could wave a wand and you would wake up and discover it was all a dream(nightmare)! What I can offer are two bits of helpful information:
RE: the pain, there are doctors who specialize in palliative care -- they know a LOT more about lessening and often eliminating pain than nearly all regular doctors, gastroenterologists, hepatologists, and oncologists do. Please look into palliative care, whether by itself or as part of a hospice program -- there is no reason you should have to suffer unnecessarily. Hospice treats not only physical pain but also the emotional pain that a diagnosis like you just received can unleash.
RE: the "6 months maybe," doctors are notoriously bad at giving prognoses (this has been studied). When I was a hospice volunteer, several terminally ill people I worked with lived much longer than six months, even though their prognoses were the same as yours. More importantly, their quality of life was very good.
That's enough for one post, but please know that you continue to be part of this community, and if you wish to continue to post about your journey, I'll be here listening and responding.
Gnatty
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mauilance - i really really hope you will be okay. Have the doc says what actually happen? It's really unimaginable that you did 6 months ultrasound apart and suddenly something like this just happen - esp when your readings are almost perfect.
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Hi mauilance, I can only echo the thoughts of those who have already posted. Please know there are people on this forum at all stages of their lifelong health journey and I am sure they will be a source of information Nd support for you.
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I just got confirmation that there are 2 masses on my liver that are large enough to keep me out of the transplant program. I'm getting a second opinion, but it seems like I have a lot of pain to deal with coming up. Onto the opioids I go.
I have to go for a fine needle biopsy hopefully tomorrow to see exactly what type of cancer it is, but it is for sure a cancer he said.
Maybe 3 months bearable pain, but the pain in my liver will only get worse as the tumor grows, and it is growing very rapidly. Not a lot to look forward to here.
Hopefully I'll get a better body to house my spirit in next time.
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mauilance, thank you for continuing the conversation. Good that you are getting a second opinion, and that you are open-minded Re: opioids (although palliative care experts may have additional options available). Tumors don't necessarily grow steadily; you may have more respite up ahead than you realize. And while I wish your spirit a wonderful metamorphosis from earth-bound chrysalis to untethered butterfly, that is still in the future. Your spirit can grow in amazing ways while it is still in its present body -- others in shoes similar to yours have experienced that, and I have every confidence that you can, too. Your keen observerations tell me you have great potential to grow spiritually here and now. Lawrence LeShan's Cancer as a Turning Point may have some ideas in it that will get your creative juices bubbling.
gnatty
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Hi Mauilance
I know of one person who was going to U of CA hospital I think in SF who had an experimental tx to reduce his tumor size it was successful and he was able to get a X plant in time to save his life he in on a different forum here is a link you should contact HectorSF
He is a wealth of knowledge on this subject he has been there and back again and now is working as a patient advocate
http://www.medhelp.org/forums/Cirrhosis-of-the-Liver/show/1390
Hector is in the community leaders group of medhelp and answers many questions in the cirrhosis forum.
Hectors profile page
http://www.medhelp.org/personal_pages/user/446474
best of luck I hope Hector can give you some ideas
Lynn
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Hi Mauilance,
Gnatty is so right about prognoses. I've seen them be wrong many times. Nobody can see the future. The body has an amazing ability to heal. And there is always hope in any situation. Always.
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Mauilance,
Words rarely fail me, but they do now. I hope you are surrounded by good support as you deal with this. If there is anything at all that Forum members can do, please let us know. If you believe in prayer or positive thinking or humor or the power of love and compassion, let us know. Whatever it is, I hope that I and others can hold a place for you in our hearts. And, I hope you spend more time smelling the good sweet air than you do sitting on the computer.
From my heart (and liver),
Lucinda
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Hi Mauilance,
I've read your post about 4 times today and tried to think of something to say.It touched me to the core and I simply can't think of anything that hasn't been said by the other members here.You're in my thoughts and prayers and we're here if you need to talk or there's anything we can do.Take care of yourself and let us know how you're doing.
Bill
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Read your post, prayers for a curable prognosis always get a second opinion. Find the good report. Seek a doctor who only specializes in what you have. good luck hope some better news,
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About prognoses: an expert on the subject was six when his mother "was given a 10 percent chance of living beyond three weeks. She lived for nineteen remarkable years."
Gnatty
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just found out one is the size of a grapefruit and the other a baseball. Looks like they are out of control. My neighbor is an MD and DDS and alternative doc. He thinks I should have an IV with Vitamin C and rectal ozone therapy along with some other things like modified pectin. Ever heard of these things working quickly? Aalso he thinks it could be an infection in my mouth that made the tumor. Ever heard of that?
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Mauilance,
These are hard questions to respond to because a) we don't give medical advice,and b) I don't want to do anything to squash your hope. I've never heard of any of these things working nor the mouth infection being a cause.
I think about Steve Jobs who postponed traditional treatment for his own potentially life-threatening pancreatic cancer. He told a friend that his only regret was that he went the natural course rather than the western med course.
My point is NOT to say choose western over non-western, but rather to choose the options you can live with, and not regret the outcome. It's your life. It is easier to make good choices if you have a team of experts yo can trust.
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Unfortunately Western Medicine has written me off. They are telling me to go get palliative care and hospice setup. They have never seen anything grow this fast and they feel it's over. Any ideas?
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mauilance, I don't know anything about specific treatments, but I've just reread the sixteen pages of notes I had typed from a thoroughly researched book entitled Remarkable Recovery: What Extraordinary Healings Tell Us About Getting Well and Staying Well by Caryle Hirshberg and Marc Ian Barasch. I was expressly looking for anything that might be useful to you. This passage seems pertinent:
<quote on>
Not all of [those who had had a spontaneous cancer remission] had peaceful, loving, trusting dispositions -- that was clear. Some were downright ornery. But over and over we took note of a certain quality that we came to call "congruence" -- an impression that these people, in the midst of crisis, had discovered a way to be deeply true to themselves, manifesting a set of behaviors growing from the roots of their being. We were interested to find that a colleague, Dr. Johannes Schilder of Rotterdam, had chosen the identical term after an initial study of seven cases of spontaneous remission. These patients, he observed, had emerged from their experience with "a stronger congruence among emotions, cognitions, and behavior." "I've had three tapes of interviews judged by peers," he told us, "and they agreed most unanimously that this one characteristic -- congruence -- was the most striking."
<quote off>
More than anything, I hope you tune in to that deep place within yourself that contains the answers that are uniquely right for you.
Gnatty
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Do you have access to a second opinion?
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Unfortunately Western Medicine has written me off. They are telling me to go get palliative care and hospice setup. They have never seen anything grow this fast and they feel it's over. Any ideas?
I sent you a private message Mauilance. Hope you got it.
All the best to you in this difficult time,
kim
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Did you get in contact with HectorSF and did he offer any help?
Is your doctor a hepatologist associated with a liver transplant center? If not can you get and appointment with a liver transplant hospital they would be the best people for you to be seen by and seen ASAP
Sending my best wishes to you
Lynn
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Thanks Lynn,My doctor is Stewart Cooper, the head of the transplant division of the Pacific Medical Foundation. I believe he is one of the best doctors in SF for this and I happened to meet him when I was healthier and we got along well. He is very intrigued by my case because it isn't normal that a mass that size could be present in just 6 months. Especially with everything else normal and no cirrhosis.
I'll keep the forum up to date with the outcome. Fine needle biopsy Monday, but with a mass that size they should be able to tell if it's HCC or not. I'm sure a PET scan is just around the corner.
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Wishing you the best possible outcome.
I know everyone is sending you positive energy and prayers.
Lynn
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. . . My doctor is Stewart Cooper, the head of the transplant division of the Pacific Medical Foundation. I believe he is one of the best doctors in SF for this and I happened to meet him when I was healthier and we got along well. He is very intrigued by my case . . . I'll keep the forum up to date with the outcome. Fine needle biopsy Monday. . . .
GREAT!