18 Days into triple therapy tx w/Incivek update

[Allison1965]

Good evening!  So Gary is on day 18 of treatment.  He has been struggling with low blood counts.  He started Procrit yesterday, 40,000 units once a week.

Labs from last Thursday.  Gary has to do labs twice a week, Monday and Thursday.  We also meet with NP on Wednesdays during the High Risk clinic.  We also meet with his PCP once a month and the Endocrinologist once a month . . .  PHEW!!!! lol

WBC 1.4
RBC 2.83
Hemoglobin 9.0
Hematocrit 28.6
MVC 101
Platelet 78
Sodium 136
Potassium 5.3
Creatinine 1.7
GFR 42
Albumin 3.1
Bili 1.4
Alk Phos 132
ALT 23
AST 31
Prograf 7.6
INR 1.1
Prothrombin Time 14.2

Ribavirin 1200 mg/day
Incivek 6 big purples a day
Peg-Interferon 180 injection once a week
Procrit 40,000 units once a week

So from what I know from previous treatment, this labs are pretty low, his Prograf level is being managed very well.  The start of Incivek turned out not to be so scary.  They cut back on his dose of 1 mg twice a day to 1 mg twice a week, then after second dose in a week, cut it back to just 1 mg once a week.  So far, his levels have been ok.  He has had toxic levels of Prograf in the past, and it is VERY scary!!  So for me, this was one of the scariest parts of this treatment.

Thanks for all the notes and remembering us from our friends here on MH.  Rog1958, momofjewels, and Dee1956, geebee270, Advocate1955, April63 . . . and everyone else, thanks again for thinking of us and checking in on us.  We are both tired and just hoping this is going to be the miracle we are hoping for!  

PEACE~HOPE~LOVE
Allison and Gary

[Advocate1955]

Hi Allison,
So happy to hear that you and Gary are doing well.  I am hoping for UND at his next PCR.
Advocate1955

[Allison1965]

Hi, Boy this sure IS and emotional time!!!  The drop in VL is unbelievable, it really is!!  It is very hard to make real at this time.  With all that we have been through, we both felt that Gary was not going to have any chance, but then, WHAM, we got hope!  We do live day to day, making the best of what we have.  We are both fighting hard to get positive results.  Gary's daughter is having her second baby, this time a boy, and Gary is fighting every day to be able to spend time with them!  That is one of his main driving forces.  <3  Gotta love our family!!!
Take care and thanks so much for thinking of us and keeping in touch!!

PEACE~HOPE~LOVE
Allison

[Allison1965]

Hi, He took Procrit (first dose) on Monday, and at our weekly dr appointment, his Riba dose was dropped from 1200 mg to 600 mg.  During the clinical trials with Incevik, our Dr. told us that they did not use Procrit, they only lowered the dose of Riba, so the results were not swayed by adding anything else.  Therefore, they believe that lowering the dose of Riba will not change the end result.  I am very skeptical about that, I know the Riba helps keep the Hep C virus away . . . so . . . we'll see.  After his hmg gets back up, they said they will slowly increase the riba.  

Gary is on the 48 week treatment no matter what, because he is a transplant patient and with the cirrhosis I guess they believe that to be the chance for him.  Again, we will see.  The one other post transplant patient that U of AZ started to treat, stopped tx before the 48 weeks because the sx were just too much for her to handle.  I would really like to be able to connect with her, but so far that has not happened.  

Thanks for all your interest in Gary's tx, it is quite intersting . . .

PEACE~HOPE!!

Allison

[April63]

Allison, I read your post with high emotions. There is so much hope in them. In the viral drop, in the drop of hemoglobin, which is usually a good sign of effective therapy, in your encouragement and strength. I wish you both love.:) I was checking every day for news from you. I'm so happy that the news are so optimistic. I'm keeping my fingers crossed. Keep on fighting. Peace and love-April.

[Pepela]

I  was wonderring, with HMG dropping to 9 and adding Procrt shot, did doctor still kept your husband's Ribavirin 1200 mg/day?  
When my HMG dropped to 9, I was put on Procrit, once a week and also my Rib dose was reduced from 1000MG a day to 600 mg.  My Hmg is 95 now, I am still on Procrit and reduced dose of Riba.  
Congratulations with rapid recovery signs. That means that he will be UND in week 4 and he will need only 6 month treatment. I was UND at week four too. Most important to achieve SVR. That is what we all hope for.

[Pepela]

I  was wonderring, with HMG dropping to 9 and adding Procrt shot, did doctor still kept your husband's Ribavirin 1200 mg/day?  
When my HMG dropped to 9, I was put on Procrit, once a week and also my Rib dose was reduced from 1000MG a day to 600 mg.  My Hmg is 95 now, I am still on Procrit and reduced dose of Riba.  
Congratulations with rapid recovery signs. That means that he will be UND in week 4 and he will need only 6 month treatment. I was UND at week four too. Most important to achieve SVR. That is what we all hope for.

[Shepton]

Yes, I wish Gary and you the best. Viral Load sounds promising. Stay strong and I hope you receive the good word. The most sensitive HCV RNA test results take two weeks in my experience--it's the Gold Standard for us who have an interest in such things ; )

~Shep

(New to medhelp, not HCV tx (round #2 after 12 yrs)

[Allison1965]

It does seem like we are on the road a lot!! lol  Gary is feeling like he has been run over by a truck some days.  His calf muscles were quite sore today.  He drinks lots of water every day.   He has been nauseous quite a bit, he has some medication for this, but honestly it is not the best thing for his nausea.  Does any one have any good suggestions for helping with that???  We have a couple ideas to bounce of the PCP at our appointment on Monday.  Not sure how it will go . . .

We have found that 1/3 cup of roasted sunflower seeds really work well for eating before Incivek.  The other thing that is a bit weird, his skin is very sensitive to heat and cold.  He can't go into the hot tub and he can't go into the pool.  It is just too extreme on his skin.  When he takes a shower, it takes him a while to get the temperature just right. . . . this is different from any other shower he has taken.  ???

He does drink one cup of coffee a day and that is in the morning before his Incivek.  He uses heavy cream, 3 T with sugar.  He enjoys that in the morning. . .

Well, I am going to get his oatmeal ready for tonight's dose, he just can't eat sunflower seeds again tonight.  If I get it ready ahead of time, it makes it so much easier at 12:30 at night!  lol  

Oh,the MOST IMPORTANT INFORMATION!!!!!!  Gary started treatment on June 30 2012.  On July 2, 2012 we had labs to do, so I brought in both of our standing orders, one is for 2x a week (prograf, CBC, INR, and all the hepatology)  the second one is for 1x a month Viral load.  So I just gave them the orders and they ended up doing both sets of orders.  Last Wednesday, we met with the Nurse Practitioner at the High Risk Clinic at U of A, and she told us that his Viral Load came back reading 10,800!!!! Ten thousand eight hundred!!!!!  He has never been that low!!! He started treatment a month prior with a viral load of 28 MILLION!!!!!  Only two days into treatment his VL was down to ten thousand!!!!  The NP said she believes his next VL will probably show undetected.  I will just be shocked if it does.  Gary and I are not believing this.  This is a miracle drug!!!  WOW!!!  It takes like 10 business days to get the results back, so we will have to wait until like August 8th to get the results.  We are both just shocked!! and VERY VERY happy!!! This helps us stay positive and gives us encouragement, we do understand that his liver is showing stage 4 cirrhosis and being post transplant, strange things can happen . . .  but we are just happy now and keeping our fingers crossed.  

We will keep you all posted . . .

PEACE~HOPE~LOVE
Allison

[Dee1956]

Hey there Allison!  Sounds like Gary has a very good doc.  Sounds like you guys are always in the car!  Good thing is that you have doctors that care and are keeping a very close eye on his blood.  That is a good thing.
I am praying this is the miracle for you that it has been for me
Hugs ((())) to you and Gary
Dee

[working dog]

thats cool that your doctor got him on procrit at 9 hgb...i think i started the procrit too late...his liver enzymes look good...has he been und? and at what week?...keep up on the water drinking...i had to use a large mouth water bottle to get enough water down fast enough that it wouldn't come back up...the incivek works great...lots of us svr now...good luck....billy