The second viral load test and more questions

[Blindie]

Does the second viral load test has to be done at the beginning or end of week 8 ?
I got a blood transfusion last week and it really helped , how long does it last and should I ask for Procit soon ? My hemoglobin was in the lower 8 .
I'm getting a rash at my injection side and on other parts of my body, when should I put on the corticosteroid cream my doctor gave me ?
I appreciate all your help and caring.
I'm on the tx with Incivek .

[DougV]

Test should be done at end of the week.  If first was undetectable it isn't so important as to timing.

I sometimes played with the timing to check hemoglobin(hgb) levels.  If I was short of breath I might speed it up, if not I might hang loose few days.  But I know my trends and timing which let me do something like that.

Which then leads to how long will a transfusion last.  Technically and of no value the answer is 120 days.  That is how long red blood cells survive.  But that is useless info.  Unfortunately the answer you are looking for, how long before your hgb drops levels that will require more blood or other intervention.  I can't tell you that, but I can help you figure it out for yourself.

You need to know how you are trending.  Where was you hgb when you started and how many weeks did it take to get to to the level you were infused at?  From there you can get rough idea of trend.  For example let's say you started with an hgb of 14 and at week 6 you were at 8.0.  Thst would be a 6 point drop in 6 weeks, or an average trend of -1 per week.  You can use any period to guesstimate trend as long as no transfusion in between.

Next you need to know how many units you received.  Each unit will raise hgb by 1 and hematocrit by 3. 

So if you trend -1 per week and you received 2 units, then assuming no intreventions (procrit or dose reduction) then your transfusion will last two weeks before additional interventions are needed.  If there are intreventions then all bets are off as it may change trends in an unknown way.

Using myself as an example, having done treatment before our (GI, hematologist, and myself) plan from the start was to no use Procrit and not reduce drugs and to deal with hgb strictly by use of transfusion.  During first 12 weeks my trend was -0.5 weekly.  I started at 16.1 so was still at 10 when Incivek ended.  From there the trend downward increased to -1 weekly so from week 14 onward I have been infuse with two units every other week on average.  I am at week 24 now and that trend varied only minute amounts.

If that is too complicated, post your hgb values as you know them up until you were transfused and we will see if we can figure it out.

As to when to start Procrit?  Sorry no straight answer again.  It takes a month to have full impact and two weeks to see any benefit.  It is expensive and has risk of its own.  Normally insurance will not cover until hgb hits 10.0.  And that is the ideal time to start it.  BUT many times first option is to reduce riba and see what that does.  If no help then Procrit is usually next, transfusion usually last resort.

Main thing is talk to your doctor and ask what their plans are.

On rash, can't help, never had one.  You do not want it to spread so I would think you want to be aggressive handling that. 

Doug

[alice]

Hi Blindie,

The second VL test is done at the end of 12 weeks when you're taking Incivek triple therapy. (not 8 weeks)

 The rash at the injection site is probably a reaction to the Peginterferon. that is pretty common and usually not a big deal. The other rashes could be allergic reactions to the Incivek and/or ribavirin.  the rashes are different and they can have different treatment strategies. If it was me, I'd go ahead and use the hydrocortisone cream now but make sure you let your doctor know about both.

Since you've already had a transfusion, I'm surprised they haven't already started Procrit. It takes 2-4 weeks or more for Procrit max effects. Transfusions seem to last a couple of weeks, more or less. There are others here with more experience with that. (such as Doug, who posted quicker than I did-- see below  )

Hang in there Blindie! You're doing grat!
alice

[DougV]

Saw ya Shalice, had hunch we were on same post.  I was expecting to edit too. 

Doug

[hepcatts]

The gastro group I go to test at weeks 2,4,8,12,16,20,24. They have me get the blood drawn on the day of my injections, before injecting (end of the week). Had blood drawn last week at week 17 because 16 was Thanksgiving. I get the results this Thurs. All have been UND so far   Kirk

[DougV]

Same testing schedule my GI uses.  I like it, the continued undetectables help me get to the next test and if there was a viral breakthrough I would know and get off the train that much sooner.

Doug

[greyrocker]

You are very fortunate to have so much testing. Mine was only covered for 4, 12 and 48 weeks during tx.

greyrocker

[Blindie]

Doug, you are incredible and thank you so much for your help . I understand some but not all of it.
Here is my last test before the transfusion .

Component   Your Value   Standard Range   Units   Flag
White Blood Cell Count   2.7   4.0 - 11.0   K/uL   L
Red Blood Cell Count   3.01   3.90 - 5.40   M/uL   L
Hemoglobin   8.5   12.0 - 15.5   g/dL   L
Hematocrit   27.8   35.0 - 47.0   %   L
MCV   92   80 - 100   fL   
MCH   28.2   27.0 - 33.0   pg   
MCHC   30.6   31.0 - 36.0   g/dL   L
RDW   20.3   <16.4 -     %   H
Platelet Count   171   150 - 400   K/uL   
Neutrophil %   65   49.0 - 74.0   %   
Lymphocyte %   22   26.0 - 46.0   %   L
Monocyte %   12   2.0 - 12.0   %   
Eosinophil %   1   0.0 - 5.0   %   
Basophil %   0   0.0 - 2.0   %   
Abs. Neutrophil   1.8   2.0 - 8.0   K/uL   L
Abs. Lymphocyte   0.6   1.0 - 5.1   K/uL   L
Abs. Monocyte   0.3   0.0 - 0.8   K/uL   
Abs. Eosinophil   0.0   0.0 - 0.5   K/uL   
Abs. Basophil   0.0   0.0 - 0.2   K/uL   
Differential Type   Automated          
White Blood Cell Morphology   Normal          
Red Blood Cell Morphology   2+ Aniso          
Platelet Morphology   Normal      

When I started my treatment 7 weeks ago my hemoglobin was at14.6 and my hematocrit was 44.1

I changed doctors after two weeks , my new doctor increased my ribaviron from 100mg to 1200 mg. after two weeks she decreased my RIBA to 800 mg, that's what I'm taking right now.

Again
Thank you for all your help
Gerlinde     
 

[Blindie]

Alice,

I appreciate your help, I e  mailed my doctor today, she usually gets back to me in a couple of days. Thanks for all the good advice.
What are you doing in Fairbanks this time of the year? I was raised in northern Germany and remember the cold icy winters.

[Blindie]

Doug,
I forgot to tell you, I got one unit of blood.

[DougV]

Ok, this is real rough, becomes more accurate as more labs are available, more complicated too.  You have dropped 6 points in 7 weeks. Just under 0.9 per week.  In that case with no intervention your unit would last 8-9 days.  But your dose was reduced with unknown effect so it makes it impossible to guess.  We all react different, for some a reduction is all it takes, for others it makes no difference.  Others respond well to Procrit and that even allows them to stay at full dosing levels of ribavirin.  And there are the oddities like me who respond to neither.

I really suggest you get at the least a CBC weekly or at most every other.  One unit would have put you at 9.5 which is safe but in case the reduction doesn't help you need to know it before getting too low.  If your next labs still show you at 9.5 or even better higher, fine, nevermind, but if you are still falling get them to check more often.

I ended up in the ER one night on my first round exactly because of that reason with an hgb of 5.8.  Course partly my fault, I don't like to complain. 

Doug

[thesame40]

i also get labs every Monday...and at weeks 4,8 and on Fri week 12 full baseline. I like that because it keeps my Dr in the now and we can be proactive if needed. I  am getting quite an education,from them as well as this site. The knowledge and experience here on this site is simply amazing. What a source of comfort and support to have at my disposal ANY time day or night.
  Thank you one and all.

[Blindie]

 Doug, thank you so much for all your effort, this forum is a life saver for me. I'll have my blood checked this Friday and let you know.
I agree with you Thesame, life would be much more more difficult without this forum.
Thank you everyone
Gerlinde


 

[hepcatts]

I bet some insurance covers more testing in the hopes that every once in a while the 500 dollar test will  let them stop paying for the 16,000 dollar Incivek

[alice]

You are very fortunate to have so much testing. Mine was only covered for 4, 12 and 48 weeks during tx.

greyrocker

yup. I'm paying for these tests out of pocket (or simply not paying, as the case may be  ) and those are the bare minmum testing times while on tx. Much as I'd like to get another VL, $600 every few weeks is too spendy for me. I've even cut back on the weekly CBCs and I have been getting by OK with CBC every 2-3 weeks, but this was after my ANC and Hgb had stabilized. Since I brought this up, I might as well add that I've recently applied for financial assistance from the testing lab, too. Fingers crossed!

alice

ps- Gerlinde... I don't what I'm doing in Fairbanks in the winter!