Personal Update!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/10/2010 4:31 PM (GMT -7)   
I spent yesterday and today at Mayo to have blood work, an MRI of my abdomen with Gadolinium, and a follow-up visit with my hepatologist.   Happily, there is no sign of cancer (a little over 4 years now since my surgery for liver cancer) and my blood work was stable (for me.)  The only symptom I really have is ever-increasing fatigue.
 
I'm looking forward to starting the new triple drug HCV therapy when it becomes available sometime next year!  Bring it on, I say!  I'm tired of being tired.
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 6/10/2010 4:40 PM (GMT -7)   
Yeah, Connie!!! Sorry you are so tired,,,,,,but am very happy no cancer and your bloodwork is fairly normal:) Great news!
I am not sure where I am going, but I sure know where I've been!
 


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 6/10/2010 4:43 PM (GMT -7)   
That's great, Connie! Did they find somebody good to find a vein? I know that's been a sore spot (no pun intended) for you. It's good to here good news in here. Be well. **David**
"No good deed goes unpunished."


KathleenW
Regular Member


Date Joined May 2010
Total Posts : 80
   Posted 6/10/2010 5:30 PM (GMT -7)   
Good news Connie! I am very happy for you. Stay strong, stay in the program and keep up your positive outlook! You are an inspiration to everyone on this site!
Kathleen
Life is painful, suffering is optional


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/10/2010 5:42 PM (GMT -7)   

David, I e-mailed you, but it took 2 members of the PIC team to get a vein...3 different tries...under imaging.

Thanks, everyone!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/10/2010 5:46 PM (GMT -7)   
tongue   So happy about your results Connie.   I know it's frustating for you went they can't find a vein the first time.  
 
Take care.......thoughts and prayers.......
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 6/10/2010 8:59 PM (GMT -7)   
:)
There is no pit so deep that He is not deeper still... Corrie Ten Boom


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 6/10/2010 9:02 PM (GMT -7)   
Connie! Thank you for sharing your good news! This is wonderful! YOu keep up the good work. I am also interested in learning more about this new treatment. My husband has not been able to take the ribavarin and interfuron therapy due to it put him into a psychotic episode. His hepatologist at one time was considering a half dose of the interfuron and removing the ribavarin altogether, so anxious to see what comes of this new treatment.

You hang in there. I am so sorry you are so fatigued. YOu take care of you!

Mer

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/10/2010 9:34 PM (GMT -7)   

Mer, unfortunately the new treatment still includes interferon and ribavirin.  I had been treated for a short time when I was first diagnosed with hep C in '93.  At that time, the only treatment was interferon alone.  I tried 2 separate trials of it, about 6 mos. apart, but each one lasted less than 8 wks.  My white count plummeted so low both times that I was taken off treatment.  I have therefore been reluctant to again try anything with interferon, but with this shorter treatment time I'm hoping I will be able to handle it.  My doctor also said they have meds now to deal with various side effects--although I would think that psychosis would contraindicate interferon in your husband's case.  (I had the same thing happen decades ago with Prednisone and don't do well on steroids of any kind.)

Hugs,

Connie



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 6/11/2010 12:32:19 PM (GMT-6)


DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 6/10/2010 11:04 PM (GMT -7)   
Hi Connie!
 
So glad to hear your scan and bloods were great!!  I hope the new therapy works.  My friend works at Vertex so I'm pulling for it to be helpful for someone I know...and many others on this board!
 
Take care,
Dany
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
Raynaud's February 2010
meds: Azathioprine 100mg, Ursodiol 250mg BID
 
 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/11/2010 11:33 AM (GMT -7)   

Dany, I hope FDA approval will come quickly and not be delayed needlessly.  Please let us know of anything you hear through your friend at Vertex!

Thanks and hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


dontknowwhattodo
Regular Member


Date Joined Sep 2009
Total Posts : 44
   Posted 6/12/2010 2:09 PM (GMT -7)   
WONDERFUL NEWS!

mathman
Regular Member


Date Joined Jan 2010
Total Posts : 31
   Posted 6/14/2010 4:20 PM (GMT -7)   
It can be tough to find veins sometimes. When I was 18 they couldn't get me anywhere one time so they had to put an IV on my hand. That hurt like a #($&*

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/14/2010 4:52 PM (GMT -7)   

I was an IV drug user in the 60s and have a lot of scar tissue, so they are limited to where they can even try.  I also have very small, superficial veins that branch off.  Therefore, for an IV, they have to use imaging and access a deep vein in my inside upper arm.  It does hurt something awful in the hands, so I make those off limits, but mine are also too small for an IV.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


bostonmike
Regular Member


Date Joined Jan 2010
Total Posts : 166
   Posted 6/19/2010 8:31 PM (GMT -7)   
Hi Everyone,
 
 
           I will second that Connie. I am sick and tired of being sick and tired and just feeling unhealthy. I saw my hepatologist this past Thursday, 06/17/10 and told him a few days before, I cut the meds in half and within a couple of days gained 3 pounds of fluid or water weight. Thursday, the day of the follow-up I went back to 80 mg of lasix and 200 mg of Spironolactone. Already lost a pound in a half since then, so I need to be on this dose daily or I will gain water weight fast. I told him the meds make me sluggish and in the sun for a little while, forget it. I felt sick for 2 days after going for a walk for a half hour 2 days ago. It was in the 90's. I fall asleep in the morning sitting in front of the computer after sleeping 8 hours. I can lay down and nap anytime of the day and sleep. I try not to, because I do not want to sleep my life away. Sometimes it is mandatory, like the last 2 days just to feel better. I guess seeing my doctor was a reality check. He said I am doing alot better and I agree, but cannot start the new drug until after the 1st of the year. He also said that he would prefer that I had no fluid in my stomach and no edema in my legs, ankles and feet. The cocktail does not work as well he says. I am doing a lot better than a month ago as far as the fluid, but I still have some fluid retention. Enough to make my stomach distended and noticeable as well as the edema in my legs. I am not sure what he means by that. I understand I have to wait like everyone else. Then he said continue the same old; continue taking your medication; continue water restriction and low sodium diet, do not exert yourself and plenty of rest. He scheduled a M.R.I. for July and to see him in 3 months for follow-up. He also said there was nothing much I can do about the wasting syndrome of my upper body. It just comes with the cirrhosis. Oh, yeah, he also confirmed that I have End Stage Liver disease after receiving my biopsy slides from Beverly hospital. I sort of new that anyway. I did not get any bad news, but did not get any good news either. I,m not sure, it might be the Spironolactone. The more I take it the more tired I feel. My doc said it is the Quinnalon, quinine for the cramps, but I stopped that for 3 days and I still felt sluggish and tired. I felt some cramping in my feet and toes last night, so I am back taking my daily dose.  I hope my liver is too far gone to take this new drug they have. HOPE, hey at least I got that for now. You are not alone. Thanks. BostonMike.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/19/2010 9:15 PM (GMT -7)   

Mike, I think you meant you hope your liver is NOT too far gone for the new treatment (typo.)

The fatigue and wiped out feeling is likely from the liver disease, not the meds.  However, I don't think it's the best idea to be limiting fluids if you are going to be out in the summer heat for longer than a few minutes. I take a bottle of water with me at all times, so I can just take a swig here and there.  Dehydration WILL make you feel tired and dizzy.  You can restrict fluids once you are indoors, but outside--stay hydrated!  I still take 20 mg Lasix and 100 mg Aldactone.  However, I have now cut them to twice a week as I see my BUN steadily climbing up and know it's from the diuretics.  Next, I will try taking them just once a week or PRN.

I hope we will both be able to try the new treatment next year, Mike!  Meanwhile, just listen to your body and if you must sleep, do so.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 6/20/2010 4:52 AM (GMT -7)   
Mike and I have spoken about these things before as my symptoms were almost identical a year ago.
I had been drinking over a half gallon a day, but with my legs "blowing up," was told to cut down to a litre a day. However, I had to stay in bed most of the time, with my legs elevated. It helped somewhat. I reached a point, where I learned to sleep with a couple of pillows under my legs, otherwise they'd become incredibly painful. Even an hour on my feet was agony or a couple hours when they weren't elevated. The trick is to not become dehydrated, yet prevent bloating. **David**
"No good deed goes unpunished."


allie2631
Regular Member


Date Joined Mar 2008
Total Posts : 313
   Posted 6/21/2010 12:34 AM (GMT -7)   
Hello Connie so pleased to hear of your good progress, you are so good at helping other that i simply forget that you have your own concerns. You are a star...

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/21/2010 11:00 AM (GMT -7)   
 Thanks, Allie.   cool
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 02, 2016 7:44 PM (GMT -7)
There are a total of 2,731,927 posts in 300,977 threads.
View Active Threads


Who's Online
This forum has 151134 registered members. Please welcome our newest member, Purplewings49.
285 Guest(s), 9 Registered Member(s) are currently online.  Details
Mews2much, Helgramite, Tirzah, ppm guy, Michael In NY, jennydancingfish, Lynnwood, Broncofan18, multifacetedme


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer