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All the best,
-- Jim
I'm so sorry for this news - oh man that just sucks. Have you been looking into one of the trials or doing an extended treatment at all? It did work for Kalio and I and we were really lookin' like we wouldn't get SVR ever if you remember.......
Oh I'm so sorry. You've always been one of my very favorite people on here and I am just so saddened. I was sure you'd made it through just fine and were out there enjoying life and had no reason to post at all.
Plan B has worked for MANY of our friends in here as you've seen so don't you dare give up. It was so great to see you had posted - but not like this.
I hope you hang around and chat with us again - we could always use your wonderful personality and attitude in here regardless of anything.
Debby
Jim, good to see your still around. Hope all is well, hope you gave up creame de what stuff, You had be worried. Any suggestions?
Angel, hope all is well and glad your not behaving, its to late in life to change us now. :) As for plan B don't know????????
NY girl, How in the heck have you been? I haven't been around to drive you any more crazy then what you are.:) As for extended tx. I did a total of 86 weeks so i guess i need to try something new.
Thanks people, i got alot of laughs here....... Now back to being bad.:) Want any ice-cream little girls?
Can-do
Can
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Any suggestions?
It depends on your skin texture and coloring. I actually did give up the "creame de what" but would glad to give you my overstock. Thought you would be the last to visit the otherside, but ya never know.
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Or maybe you were asking for tx suggestions, wasn't sure. Let me know and I'll be glad to share whatever I know, but I did forget most of your treatment history and stats except that you were stage 4.
-- Jim
Like Jim said, you have probably done a world of good for your liver. I think you said you printed off the thread about all the vitamins and such recommened by HR that would help fibrois. Are you going to take that to your happy hepo and get his take?
I guess all you can do right now is heal from the treatment and take a breather.
frijole
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Thanks but no thanks on the cream de what stuff, Still on my side of the tracks andd have no plans on going to the other side. If i do i have left orders for people to just shoot me.:) Like they wouldn't like to anyway.
Geno type 1b, stage 4... Slow responder, didn't clear until around week 24 had a 3 and a half log drop at week 12. Extended from 72 weeks to 86. Had a script for 12 weeks more at week 72 plus a extra two weeks that was given to me at week 48 in case my insurance gave me trouble.
Waited for 14 weeks post tx. to have my PCR done. Found out today my viral load was 470,000 was unde from week 24 though the end of tx.
http://www.medhelp.org/posts/show/373346
Suggestions other than "Creme de What":
(1) I always believe in getting as much info as possible before moving on. In your case that might be another biopsy and/or Fibroscan to see what's going on inside. I'd suggest both if feasible. Fibroscan mostly in trial here in the U.S. but you can check with the following center:
http://clinicaltrials.gov/ct2/show/NCT00125762?term=fibroscan&rank=1
Also, Dr. Eugene Schiff in Florida has a private scan and "HR" also has scanned folks here. A post or private mail to "Forseegood" should put you in touch.
(2) More brainpower also helps. Not familiar with who you were treated with. GI? Hepatologist? Ice Cream maker? Never know.
But it really doesn't matter who, I'd still get another opinion -- or two or three -- depending on logistics, resources and energy. The more brains you get working for you the better. At this point, think of each of these doctors as consults, not doctors, and collect as much info and ideas as you can. Of course, bring along your entire medical history, organized up a bit, along with all blood and procedure reports and the original biopsy slide set, not just the biopsy report. What part of the country are you in btw?
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Anyway, that would be how I personally would start to approach things. First, find out where you're at now in terms of histology and speak to as many experienced clinicians as feasible looking for ideas. I would limit my list to hepatologists. Here's a short list of some very good ones and a day or two spent traveling might just be worth it.
Dr. Nezam Afdhal -- Beth Israel Hospital, Boston. (Has a Fibroscan)
http://tinyurl.com/nbavn
Dr. Ira Jacobsen, NY Hospital, NY (Will not take insurance, around $600 for consult but well worth it by all accounts. NYGirl saw him and gave a big thumbs up)
http://www.cornellphysicians.com/imjacobson/
Dr. Douglas Dieterich, Mount Sinai Hospital NY.
http://directory.mssm.edu/faculty/facultyInfo.php?id=21794&deptid=18
Dr. John Mchutchison, MD, Duke
http://www.dukemednews.org/experts/detail.php?id=356
(3) There are lots of new (and old) things to consider when treating again I could go into, with the new PI's (like Vertex/Telaprevir) leading the list. Other things worth mentioning are: Alinia, phlebotomy, double-dosing, pre-dosing ribavirin, etc, etc, -- but I really think that is putting the cart before the horse. The horse again being to collect information -- biopsy and/or Fibroscan -- and then get some good input from the brains in the field who will have the advantage of having your entire medical records in front of them.
(4) Take that job as "Pool Boy" you've been looking for. Find the right pool and nothing else will probably matter.
-- Jim
Dr. Eugene Schiff, Miami
http://www.med.miami.edu/med/faculty.asp?id=34887
Dr. Donald Jensen, Chicago
http://www.hcvadvocate.org/Medical_Writers_Circle/jensen.htm
Jim... Lost that "Pool Boy" job, i was a day late and "something" short... Oh yeah a dollar short i think.:) Seeing a Hepatologist thats head of the liver department here in Indiana at I U medical center.
If your into cornfields Indiana is a exciting place to be. Cornfields come in handy for the side of the road stops sometimes. Corncobs can be a little rough though.
I agree a second maybe a third consult is needed..... As i told FLguy i used to live around where Doctor Schiff is so maybe his opinion and maybe a fibroscan wouldn't be a bad ideal.
I can't see going the same route tx wise without some changes;
can do.....Still pushing his ice-cream
best of luck in the next round.
wyntre
wyntre9, Thanks and was wondering how things were going for you?
I feel awful that the tx didn't work for you! After so many months and back it comes, major disappointment. Something will come around to help you get rid of the virus. At least that is what I have been hearing. My next door neighbor is a research virus doctor at the UW, I will ask him if he has heard of anything developing on the HCV front. He is an incredibly bright guy. Thanks for coming online to let us know.
I should have known better but like allways didn't think and used it anyway. My hepo and his office staff had a good time with that for a long time.
Hope all is well with you and thanks for the laugh as i thought everyone had forgotten that.
can-do tried but the cream didn't work. :)
Note to all..... Be nice to anise.... OUCH
-- Jim
Mouse
P.S. I'm starting my second round of tx tomorrow.
willing- a taxidermist-like dosing-HAW.....i think we all got stuffed on the sh!t
anise-you can come up north and split wood any oldtime
Oh! Heck, when you beat this thing out (and you will) I am still game for the Cadillac trip to Vegas Strip with the gang. And yes I still look forward to being the hood ornament. WOOO WHOOO
Again, I am sorry it did not work for you this time.
Lady in a Cage
Swinging High
prettypoisonNOMORE, still have the monte, hope your looking out your window.
lady in a cage, good to hear from you, still dancing in the cage i see. I got a few dollars left.:) as for (pops) strator don't know if he comes here anymore. After i peed in the pool he gave me the boot. No xmas,birthday nothing nada thing. Like i said he liked you girls better then us boys. As long as your still game for the vegas trip me shall never give up. Wishing you the best.
Mouse, Thanks and the best to you on your 2nd try, I think you will beat it this time. Stay well
Take good care, my friend. And stay away from the foo-foo creme, and carry those ice cream tubs out away from the 'delivery unit'.
PS How are the G-kiddies?
The grand kids are just great thanks. I'm still getting in trouble for teaching them all the good things that the schools don't.
Been any good roids threads lately? Geez i sure miss them..... Not the roids as i can sit better but the threads. Keep up the good work guy.
can-do keeping the tubs away from the 'delivery unit'
PS Remember the weather or whether? I still get confused easy
Some weeks ago I asked forseegood to write to you in my behalf, maybe you did not see it.
You know plan B, we have talked about it, but right now you need a good rest, not too long though.
Give me a buzz when you feel up to discuss plan B.
You were a responder, albeit late. With some adjustments SVR is still in the cards.
In the next few month I'll get a new PC, this thing here is 10 years old and needs to go. So at some point I will be able to get in touch with you unless you call me before.
So sorry it did not work this time.
Ina
I'm still so sorry for your bad luck but I have to admit.........it's just so great to see you back in our little community it makes me happy.
See how many people really missed you like crazy by reading this thread???????
Don't you dare leave us again. You've actually even gotten our old pal Eisbein out of retirement and posting!!!!! :)
But like Ina said, you are a responder(!), so I wouldn't consider switching to Infergen for plan B (in case if you were considering).
If you check our archives, medhelp had many discussions regarding use of Alinia together with SOC.
And of course, good consult in Miami will be very helpful.
All the best ... and I know (we all know) -- you CAN DO IT!
TALLAHSSEE, Thanks for the info. Going to be checking out all my options, Like the little engine that could. I think i can, I think i can:)
PRETTY, Right back at ya, As i'm going to be checking back on you to:)
NYGIRL, Thanks but no record here as Ina and Lvdbygod served over 2 years before being let out for good behavior. Your still a sweety...BTW you still have them things in your nightstand? :)
SUSAN400, Thanks. After all the tx.s and other things you been through i feel lucky... Wishing you the very very best.
You took your PCR on my birthday, and I wanted you to know that I would be thinking about you.
But like I said, you probably didn't see it.
I am planning this spring to fly to HR and have a fibroscan. If you like, we could meet there and have one together. I am sure Dr. K would be thrilled, and HR can give you his 5 cent too, I mean in regards to re tx. Foresee can come along for fun, that is if she is not on tx. This way six ears and eyes will listen to his recommendations.
This will be a sad X-mas for me too.
My dear husband died this past saturday.
I was there when he took his last breath....my voice was the last one he heard, and my touch was the last one he felt. He never saw the inside of a nursing home, he stayed right here as he had wished, in the comfort of his home and me taking care of him.
I hope you see this post can do, because I have been neglecting you during the 6 month and I apologize for that.
I felt I had beaten you to a pulp already trying to shove 2 years down your throat, and felt it was time to lay low before you gave me "das boot".
Btw, you can not count the weeks you tapered off meds. Once you reduced your dosage, your tx has officially ended.
If you lost my number, forsee can e-mail it to you.
Ina
Thought I could tolerate onions and garlic....not so, they are a big no no.
And so it goes in the land of the post tx allergy prone.
Ina
Ina I know there is nothing that any of us can do but please if there is ANYTHING please let me know. It's so hard to have so little words to express such big feelings but I am sure you know what I mean.
Debby
Plase accept my deepest and sincere condolences ...
I just left you a message and sent you e-mail. Sorry, that didn't do it earlier ... but I was thinking about you and your husband.
I'll try to call you later.
I'm very - very sory ... please continue to be strong, as always.
I sent you a belated e-mail also.
Thank you for your help!
Ina,,,Bless your heart! You have definitely had your plate full the past couple of years and to read this about your husband.....I'm so very sorry!! I was glad to read that your husband was able to stay at house with you and not go to nursing home!! Take care Ina!
Just wanted to send my condolences to you on the loss of your husband. To be there with him, as hard as that had to be, at home is very special. I wish you strength and healing in the days ahead.
So sorry.
Can do......so sorry for you too. What a rough road that 86 weeks had to be. Feel so bad for you that go thru so many weeks :{
Your liver must be better now to hold out for plan B. Good luck to you, like you said, you'll beat it.
LL
Bug
Love,
Linda
Yes, my voice was truly the last one he heard. Hospice had told me that hearing would be the last sense to go. I thought he might had slipped into a coma during the last couple of days, but not so.
I would hover right over his face, call his name and asked him to try to open his eyes. He tried and tried, but all he could do was lift his eyebrows.
At one point he still managed to squeeze my hand ever so lightly, letting me know that he had "not left".
Sometime during the day I asked him to blink with closed eyes, and he did. I had studied his motionless face for hours and never observerd any movement of his eyes, except when I asked him to.
All the things I should have said during his lifetime I cramped into his last few days. I told him over and over again that I loved him, words that I had said far to infrequently during the last 25 years.
I had month and month of preparation, but when he finally left I was not prepared at all. When he took his last breath I went into shock......I couldn't believe it, he was gone, gone from my sight, gone forever, gone to a place were my words could not reach anymore.
The finality of it is tearing me apart.
I am looking for signs of his spirit still being around, I asign meaning to things that may indicate his presence, and I talk to him just as I did when he was still around.
Hospice left me a little book, the last page reads:
I am standing upon the seashore. A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean.
She is an object of beauty and strength. I stand and watch her until at length she hangs like a speck of white cloud just where the sea and sky come to mingle with each other.
Then someone at my side says: "There, she is gone!"
"Gone where?"
Gone from my sight. That is all. She is just as large in mast and hull and spar as she was when she left my side and she is just as able to bear her load of living freight to her destined port.
Her diminished size is in me, not in her.
And just at the moment when someone at my side says:" There, she is gone!" ther are other eyes watching her coming, and other voices ready to take up the glad shout:" Here she comes!"
And that is dying.
Henry Van Dyke
Thank you to all that posted,
Ina
So very nice to hear from you.
If you can talk endlessly about your situation, I can listen endlessly.
And remember, there are ways and there are ways.
If the kosher way does not work, maybe the well lets say "unkosher" way will get results.
Can't always do everything by the book, sometimes rules need to be broken.
I will fax foresee a letter about how to reach me a little easier, and she will e-mail it to you.
Stay well and hope to hear from you soon.
Ina
4see, you can never get on my wrong side...at least I don't think so :)
Ina, I realized I did not say my condolences on the phone. Silly me. You are so right, there is no way to prepare for the death of a loved one. it is still shocking and traumatic. I am happy that you share so much and made every last moment count. I am sad that you are going to feel the loneliness and sadness for sometime. Take a vacation to the east coast and spend sometime back in the big apple, when you feel better. take good care and we will talk soon. Love ya too.
Hope this finds you well and in case you don't show up for another year or two.
Happy Holidays and New Year,
-- Jim
May your beloved husband rest in peace.
-- Jim
to all who know me:
I kind of faded at the time the changes in MH happened and got busy with college searching, and the advent of 7 new society finches babies, that decided to enter the world during the last holiday season. Once I got "detoxed" from the board after a couple of weeks, I did not want to get hooked again, and there is always someone here to help the new ones out, so...it got easier to stay away than to come back. Kind of felt guilty for forgetting about hep c and what others might be going thru, though.
My brother was dx recently, but has not called me for help, so I guess he is handling it ok.
Just got my 3 yr post tx qualitative PCR, but did not get my copies yet. I have only gotten one and a half cold in those three yrs. Not sure why, I got sick last yr after not having colds or flu for so long, but I figured that whatever positive changes the tx brought to my immune system finally wore off. This yr, I am back to not getting sick. Weird. Wish someone would check post tx immune positive changes that might be at work with some of us.
Honey, Angie, Nygirl, willing, and all those old friends, hello and Happy Holidays.
Nygirl, is that the old girl, the one with the two genos? What was the outcome of tx? sorry I missed it. Update me with any others I might have missed, how is Mr Beagle? Florida man? and others?
Maybe I will try and read once a wk or so. I am by myself, now that dtr is in college.
How is Vicky, Sally? A lot to catch up to. I know. what ever happened to some of the controversial characters here? line Njrsl and spacecoast?
Well, whoever has time can answer, if they want. TY
Angie, i am so pleased that you were such a good friend to our Ina, when some of us were not. She is truly special!
NYGirl is SVR, Mr. Beagle relapsed, FLGuy is UND 3 weeks post treatment on his second try and is now waiting for results from his post tx week 12 PCR. But given his 3 week result and the fact he was UND at week 2 of treatment, I see that test simply as a formality.
Speaking of colds, like yourself, my immune system seemed to be in overdrive and only got one mild cold UNTIL about a month ago and then had a real doozee. Not sure if that is good or bad but I'll take it as good news that my immune system is normalizing somewhat. Who knows.
Good luck with your year 3 PCR. My two year post PCR is coming up in March I think, but not sure I'll even bother unless my enzymes go awry.
Good to see your life is moving on as well as it appears.
-- Jim
I do that all the time....don't recognize the sender, and out it goes.
Maybe you can get through to him and tell him to read at his post.
It feels so good to see so many familiar names in one thread. I do miss the old board, it felt a little more like family. Sounds crazy, but...
Child 24, pretty poison, Jim, 4c.....thank you all for sending your condolences.
The first week has been very hectic, lots of phonecalls, people coming and going, family, all on the east coast needed notifying, etc.
But little by little there are less calls, less inquiries, and a silence is blanketing the house. A silence I am not used to, but am learning to accept.
This will be a quiet X-mas and New Year. I will spend it alone and reflect on the past 25 years.
Like 4c told me, live a day at a time, if you have to an hour at a time, look no further, just think of getting through the day ahead.....and that's what I am doing.
Ina
Hugss and Love,
Linda
Honey/Sally
Ina, so sorry to hear the news. Your husband was a very lucky guy to have you as i know you took great care of him. Will be getting ahold of you soon.
Can man heading to the can
SFBAY, so hows my other california gal been? I know your not behaving:)
Hope all has been well for you
BUG LADY, Hope all has been well for you and thanks for thinking of me.
ANGEL, Put them durn pans away, but keep being bad:)
Can-do thinks all the BEST girls in the world come to med-help
You always cheered me up and I had a rough road, so did you! Keep us posted and great seeing you.
Hugs (Don't get no ideas!)
Linda
Always keep the faith!!!!
cutey - omg - have only been trying to get in touch with you for over a year...glad to see you here again, and i really hope you are well, i have missed you..
ina - my deepest sympathy to you. i lost my husband 4yrs ago, and just know that i will be thinking of you....
chelley