Who is on infergen?????.....and How is it Going?????

[shebee]

Hi, all...



I would like to know who is on infergen and riba ...and how is it going?






Hubby was also on Procrit, but has slacked off.  Even his nurse admitted that others were having a bit of trouble.  (she did not say much, but asked a lot of questions at last dr. visit.)



He is only doing Procrit when I look at him and he is pale.  
After so many blood test, both of us know when his blood count drops.  LOL!  

Hubby is doin' ok 2nd time around, but unable to work this time.  Some days he is functional....others...when meds build up....he is sick.  I have watched him stay in bed for 24+ hours.

He is really trying to get beat this dragon.  He is on max dose of infergen & riba now.  I hope better meds come out soon.



I might add that I know that his liver is somehow better.  Before tx, he was going downhill fast.

He has had a lot of interferon....??????  Perhaps it help to somehow rest or heal the liver???

Let me know how you are all doing...and how long you expect to do tx.

Shebee

[thepoet]

Just you
When I'm looking at the world with rose colored glasses,
Im thinking of you
When I see all thats beautiful,
Im thinking of you
When Iam blessed with seeing the sun raise,
Im thinking of you
When Im sick and alone,
Im thinking of you
When we fight and argue,
Im thinking of me
This is the thing blind eyes cant see
When we forget what life is about,
this causes confusion and much doubt
True understanding holds much light,
let this be you guide for sight
We all need a higher power to help us stand tall,
without God, you will surely fall
I came home like a roster to rest,
to lay my head upond your breast
For peace of mind and a family to hold me tight,
not for love lost on the darkest of nights
With this notion and in his eyes,
we must keep our sight on the prize
The gift of love and to know your blessed,
to survive hard times and pass the test
Learn to walk and keep it true,
even when your sad or even blue
the movement of time keeps us flowing,
the gift of life is ever growing
No hidden gender, no malice soul,
no death to young, no death to old
Many waste on hate and shame,
your sick now, who do we blame?
This thing you call your curse is now my gift,
to not waste time, I have souls to lift
No time for sorrow, my trains coming threw,
your on my mind, just you

[LvdByGod]

sorry for the interupt....there's a note to all from me under ella's post below...see ya there!!!

[Galen]

Sorry to interupt this post but it just occurred to me that there are two places that the addy the lawsuit lady used is posted.  One is the Hepsongs site and the other is HotHeps.  Anyone else listed on these sites?

[Honey15637]

Sheebee...Your posts always make me laugh and you seem to be right on the money on life on "TX".  LOL  Seems like you are on it! Lately...when you have posted, I'm worried about you as I can see how much this is taking a toll on your everyday living. And rightfully so...I know its so hard to worry about your husband, and wonder if your life will be normal one day, and you won't have to worry about that dang thing called "Liver"!!

You are taking on too much with your job and the worrying.. And you are always doing the checking for your hubby and the latest on tx...You are a great person and so much support for him.  Step Back....And give yourself a big pat on the back and take a deep breath.  You said your hubby is home now and not able to work...Has he ever thought of participating in forum or even better does he do an outside support group?  I know for people that are on this...it helps so much to know everyone to some degree is going through exactly what you are and it is uplifting and also the humor here.  Everyone here is lots of fun and very understanding...but then you know that.  There is 2 people on infergen...One is Nann and other is Southernboy and I hope they see this posting to help you out!  I think about you and your family alot and know its a struggle!  Hang in there Lady..Things will work out!

[Southernboy]

Hi Shebee,

Sorry hubby is having such a difficult time with treatment.  There are several key issues here.  One is that the anemia is not as much due to the interferon as to the ribavirin.  The second issue is that there is no known max dose of interferon.  Some docs are using 360 mics of Pegasys (180 is standard) and others are using 27 mics of infergen on a daily basis (15 mics either 3x per week or daily is standard) with some success.  Some are even using a combination of both (or PegIntron).  The treatment protocol is very flexible and is evolving very quickly at this time both in terms of dosage and length of treatment.  Where it will lead.......who knows?

Also, Procrit doesn't always work.  It has minimal effect on me.  I am on 80,000 units of Procrit per week and can't seem to keep my hemoglobin above 10.  In fact it dropped to 7.9 at one point and they gave me a transfusion to keep me among the living.

These sides must be managed to the best of our abilities and to each persons tolerance level.

I am on 15 mics of Infergen daily, 100 mics of Interferon 3x per week and weight based riba.  I am also on 150 mics of Neupogen 2x per week.  This protocol is helping, but slowly.  VL is at 12,500 down from 500,000 after 6 months.

Needless to say, I am not having a whole lot of fun at this point, but anything can be tolerated if you keep the end goal in sight.

If I can provide any other information or answer any other questions please do not hesitate to ask.  We can do it here or you may email me at ***@**** if you prefer.

Best to you and to all.  Keep your head up and come here if either you or hubby need encouragement.  The world is a good place.

Steve

[Southernboy]

Sorry,
That should have been 100 mics of interferon Gamma 3x per week.  This is a different type of interferon with the brand name of Actimmune.  I am somewhat brain dead and in a bit of a hurry.  I will check back later when I have more time.
Steve

[shebee]

Thank you both...and all.  Each and everytime I think that I am having a hard time...I just look around, and decide, my life is fine.  LOL!

I am trying not to let work kill me, nor hubby's bad days.

Our house is a mess, but a happy mess.  Friends, dinners, sewing, cooking, concerts, chatting with neighbors, planting flowers...seem to be a thing of the past.  Perhaps someday...????

I have been saving up for our vacation.  I now have our passports tucked away. In Sept. I will have two weeks of vacation.  I am thinking about a "Shebee" adventure!

Shall I force my hubby to swim with turtles?  ...or rent a really big boat and just float away?  (He can sail...I haven't learned yet.  this seems riskly because of his meds...no telling where we might end up if I am forced to take the _______  ???????)



Our 11 year old daughter is now taking up the slack.  She can cook, do dishes...and keep up the laundry.  (kinda)  I am sending her to camp this year with new clothes!
    I am so proud of her.

Hubby is doin' the 15 of infergen + riba.  He has already tried the other stuff.

Procrit works for him, but he is not functional at all...for days after.

My hubby is the best.  I think that in some strange way...that I have become a better person because of him.  I learned from him to not stop...just keep on going.  If one day is bad, just get up the next day and go on.  I learned to reach for the stars...and that time and chance happens to all men...and one should prepare themself for just such a time.  ...and to step way above your dreams.


I worry about myself, too, when I have a day off.

Aw...8am to 9:30pm on Sat.  I am not looking forward to the next day.  LOL!

Best wishes to you all,
Shebee

[shebee]

Hey, what a beautiful poem!  Thanks.  Each time I check in...I read it...

Life should be viewed with rose colored glasses, eh?

Shebee