TREATMENT DIARIES

[dusty567]

Hey guys,
Yeah, I am still here.  UD at 24 weeks, looking at 72 total.  Have had some breathing and extreme weakness issues this past week.  Went to er, they could not find anything to explain it, but put me on steroids and an abeutrol inhaler.  Helps some, but my nerves are shot and I feel sore all over after 5 50 mg pills.  Finally got to see doc Friday, did a pulmonary function test, results Monday, and he gave me a symbacort inhaler to use am and pm with abeutrol inbetween if needed.  So I am breathing better. bp was 169/80 on sat, back down to 118/70 friday.  Still weak, and like I said a jittery mess, but breathing better.  This is the longest I have been on tx--did shot 28 thurs.  Go back to doc next Friday.
Hope everyone is doing well.
God Bless,
Cathy 

[MissyMouse]

Hang on to that treatment life preserver Cathy.  You can do it, I know you can.

Feel better soon,

Mouse

[Betty W.]

Cathy, gosh, I am so sorry you are going through so much !

The only thing I can say is one minute, one hour, one day, at a time........I have learnwd one thing in reading
these posts is, that everyone experiences different symptoms at different times on tx. and that all
of it sucks......

I pray for all of you every day, and pray that I never have to go through what you all are experiencing !

My prayers, Betty

[Longleggsfromwa]

Hello everyone,
 I am still hanging in there. I am still very fatigued and have some appetite issues going on. I am on a much needed 10 day vacation from work and have been catching up on the rest. I am in week 30 now and my labs are still so called good. My hgb is 9.4 now and I am having some SOB and endurance issues. My PCP talked to my GI doc and he doesn`t want to put me on procrit. He said that studies have show that it frequently causes aplastic anemia and He would rather give me a blood tranfusion when my HGB gets down to 7-8. I hope it stabilizes as I really don`t want a transfusion. The depression is better, I am not crying all the time any more,but I still have been very anti-social. I am sorry I haven`t posted in a while, I will try to post more often,
        Pam

[wings]

Pam

Maybe there a real reason for not giving procrit but the protocol for approval is 11 on the hemocrit or hemoglob, it is which ever one was the your 9.  My memory has started to fade.  I am surprised you are even walking around, GOOD GOD.  I was a mess at 12.  The doc had my old labs which were 14.5, that was my normal so he got it approved based on that.

Procrit is widly used in all cancer patients, we are no different.  The interferon is the same chemo used in skin cancer, besides interlukin.  My levels where back to normal by week two.  I would have taken a shot instead of being hospitalize with a transfusion plus the hospital cost.  Hey, procrit can have side effects but the interferon, as myself, has been so far the worse drug that I am not shaking.  (its been 3 years post tx)  The procrit helps us stay on the treatment to get through it.  And your also working God Bless you that is a feet along with the mountain you are climbing now.

If you want it you can demand it.  Oh the cost normally for procrit is very pricey but not as much as a hospital stay along with the transfusion.

I am one of those people that question the motives as to why doctors sometimes make these decision and I not always confident it is in the best interest of the patient.  They should always have a reason that pertains to you personnally.  (sorry if I sound agitated sometimes the profession is very frustating)

Hope you get your level up soon, the fatigue is the worst.

sheila/wings

[MissyMouse]

I agree with everything Sheila said.  I was on Aranesp (a longer lasting form  of Procrit injected every other week) by the time my hemaglobin dropped to 10.  Transfusions are really not a good thing for heppers  with liver damage.

Mouse

[Pancho and Lefty]

Pam and Cathy,

Well. . . . you're both still ticking so things could be worse. 

Pam,

Don't have a clue about your doc's opinion. Am glad your mood may have leveled a little. Don't know if you've been reading this board, but I've been whining about blood tests and cholesterol and being generally dissatisfied.

Well, bottom line is that the whole trip was worth the effort. I'm really feeling better these days. You had some good early viral load results if I remember right. So, in the end, you'll look back at this and think. . . . THAT SUCKED!!! , but if the virus clears. . . every godawful moment will be well spent.

Cathy,

I had the erratic bp stuff going on. It was 170 at the doc's when I was having a ribatude moment. Next time it was 116 over low. If you're wheezing, how's your hgb?

Shot nerves??? Why that sounds familiar. Are you taking antidepressants? Most people seem to chill out taking them. . . .didn't work for me, but I'm probably the exception.

It seems like things just keep coming at you on tx. . . and solutions have to be found one at a time.

hang in there both of you. . . the prize is worth the ordeal.

Max

 

[oo7guy]

Well im off meds,  \But i did fine out that i might of been in the arm/trial that took 'Boceprevir' too week 24 and the took off to placebo O_O seems like that when things changed for me.     

                                                               I have yet begone this Fight!
                                                                        one day at a time

[MissyMouse]

7,

Are you off because you finished or was there an issue?  What's going on?  How are you feeling?

Mouse

[oo7guy]

I feel fine, heck lastweek wife and i walked 10 miles  as for as why im off meds vl cameback breakthough/relaps. cant findout what arm im in for a year! o il stay with the studie they'll studie/Dr.Bacon keep an eye on me, and i'll get a chance for the next studie. they said i was a good responder  o_O

[Pancho and Lefty]

007,

Sorry to hear the news. I guess breakthrough does happen. It's good that you'll be a prospect for any further studies.

There's info around that indicates lifestyle. . . . diet and exercise can help prevent liver disease progression.I posted a study that indicates dietary cholesterol is not good. Keeping the weight off is another thing that seems to be widely accepted.

I know it's not like getting rid of the virus, but doing what you can may help keep things together until a workable tx comes along.

best wishes,

Max

[Longleggsfromwa]

Wings,Missy and Max,
 Thank you for your input, I see my GI doc in 2 weeks,I am going to take your advise and demand that I get on procrit ! My primary PCP is on vacation but she left an order for a CBC in her office for me if I feel I need to have it checked again. I think I will do just that. Back 2 months ago I was told that they wanted to wait for procrit until my HGB drops to 10. WTF ?I think I am getting lip service right now. I have said several times to my self : How low will they let it go? and are they waiting until I pass out and fall before anything is done? Thanks again for your input. It helped me lots,
                                                                                                                      Pam
                                                                                           

[wings]

Pam

The number probably is 10 (again brain fog never lifted) BUT I remember the holy hell I was put threw and barly could walk into the office.  The insurance Co sets the guidelines (they should be on this stuff).  By you being at 9 authorizes you for the procrit no need for you to suffer anymore than you are.   

When the numbers drop like that it can put you at risk of reducing the Riba and even stopping the treatment.  You have come to far and the goal is to continue treatment.  You have to be pushy even though that is the LAST thing you need or want to do. 

Even if she is on vacation you can still call in and there should be someone that can provide or start the paperwork to get it.  This normally needs a preapproval from insurance or maybe yours doesnt.  Preapproval pushed me from getting it another 2 weeks.  At that point I just wanted someone to shoot me. 

Hopefully you can convince them without stressing more on you, that there is a med out there to help you continue on

stay strong
sheila/wings

[Longleggsfromwa]

Hi Everyone,
 Well I went and got another CBC done on Thursday and the results were unbelievable.............truly unbelievable ! My HGB went from 9.4 to 12.2 in 2 weeks. I do not believe it ! My body tells me otherwise. Before I had the blood draw, I spoke with my GI docs nurse and she stuck to her guns about not using Procrit. I have been getting all of my monthly labs drawn at the hospital and Thrusdays lab was done at a different lab................HUM.........I have doubts that the test was accurate. My primary Dr comes back from vacation next week and i will be calling her with my concerns. My GI doc won`t be back for another week. I will keep you all posted on this. I have my monthly labs done in 2 weeks and I am diffently going to repeat the CBC.I am still so very weak and get SOB with little exertion. I am suppose to be getting a referral to a lung specialist.I feel like I am getting nothing but lip service from my health providers.Oh yeah, to add more pain and suffering........my washer machine broke on Friday and needs 300.00-600.00 of repairs.Great !!!! NOT!!!! All right I am done whining, I hope everyone has a great weekend,
                                                                                                                                                                        Pam

[MissyMouse]

I think you are getting "lip service" as well.  Uhhh... I think it's time for a new washer.   Ya know I keep telling life that it has to stop dealing daily stressor blows when people are on tx but it just doesn't seem to work.

Hang in there Pam.

Mouse