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Houston, mayday,mayday....

by gauf, Jul 03, 2008 08:53AM
Latest CBC reslt  message:

Geoffrey-
Your white blood cell count is unacceptably low at this point. I will release the results when they are available.
Dr Zein has ordered more Neupogen for you. The RX was sent to Medco this morning.
I was unable to get through on your cell phones, but I know you get your messages promptly on MyChart.

Please take 1 dose of Neupogen DAILY for 3 DAYS, then start on a three times/week schedule.
PEGASYS - preferably you would skip your dose this week, but if you feel you really need to take it, only take HALF (90mcg).

Continue to take precautions against infection and call if you have fever or are not feeling well.

Repeat your CBC next Wednesday

Any questions - please call.
I will be out next week, there will be people here covering if you need anything.

-Lara
----------------------------------------------------

Dang, things were going just a little too well. Oxymatrine does not seem to help WBC at all. I am putting that aspect of it to bed.  I hope the mushrooms work and work quickly!

---------------------------------------------------

If the astronauts reenter the atmosphere too steep, they burn up.... too shallow and they skip off into space....

"Flight, 13 is coming in too shallow,...should we tell em?"

"Is there anything they can do about it?"

"Negative flight."

"Then they don't need to know do they!?"

"copy that flight..."


Member Comments (29)

by frijole, Jul 03, 2008 08:58AM
To: gauf
FIND OUT EXACTLY WHAT THE ANC IS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Do not reduce the Peg until you know what that is.  We have seen on the board that a lot of docs get alarmed when the ANC merely drops below the 1.5 (1500) number.  In reality, unless you are prone to lots of infections OR CIRRHOTIC you can withstand ANC as low as 400 (.4).

Neupogen is fast working and can be taken several days in a row without harm  and that is hemotologists and oncologists do for cancer patients.  However, their experience with Hep C patients is limited, and they try to treat us the same.
frijole

by frijole, Jul 03, 2008 09:04AM
To: Gauf
Read your profile and I guess you need to do what the doctor orders since you have compensated cirrhosis.  Hang in there.  Sounds like you are doing all you can on this wicked road.
frijole

by gauf, Jul 03, 2008 09:09AM
To: frijole
My ANC last week was just .26, and probably worse this week. I have 3 nuep syringes left, so will take em for 3 days. Will do a normal shot Friday night and hope.... I told the NP last week that I needed to take 3 nuep shots a week, but of course they don't listen to dumb ol patients.... Now, I see that she again "forgot" to call in extra nuep last week, so have got to start the phone tag nightmare with the mail order Pharmacy.  Frustrating yes..

by FlGuy, Jul 03, 2008 09:17AM
To: gauf
You are back to Peg once a week, right?  I would do just about anything to avoid a reduction. When I was on Neup the hematologist did 3 x week.  Of course, anc's dropped again and the scheme repeated about every three weeks or so. Not a bad price to pay to stay on track.

by meki, Jul 03, 2008 09:47AM
Oh sheesh dude --- I'm sending you some of my blood... LOL!

Love you.

Meki

by gauf, Jul 03, 2008 09:49AM
To: Meki
Ewwwwwwwww.......

by Marcia2202, Jul 03, 2008 09:51AM
To: gauf
Am thinking of you... and sending some good positive vibes your way....

Marcia

by Tallahassee, Jul 03, 2008 09:52AM
Gauf,

I agree with FL and frijole that you should avoid any peg reductions.

Did you stop taking your Neupogen after my message that Oxymatrine seems has ability to increase WBC count?
If I somehow misled you, I'm very sorry.

If you read my original message again, I was saying that you need to boost your Neupogen (I was on 3 (300 mg) shots per week for most of two years of treatment).

But later (with ANC in acceptable range), I was able to reduce my Neupogen to every 4-5 days shots with Oxymetrine's help... BUT   you Dr. should be willing to monitor your blood cells count 1-2 times per week.  Sometimes, my  CBCs were checked DAILY!

At the beginning, I had ANC as low as you had and was ordered to stop Infergen.
I  insisted to re-consider --- after that I was given Neupogen daily (like you) with daily monitoring of CBCs count.  The good news is that Neupogen is a FAST acting drug -- I almost sure that after 3 daily shotS you will have normal (if not high) levels of WBCs and ANC.  I also hope that you are seeing a Hematologist for  all blood issues...

I would recommend  -- to make a decision about Peg reduction after CBCs (after daily Neupogen shots)  -- 30 Absolute Neutrophyls Count (ANC) is considered acceptable lowest threshold during chemotherapy by most hematologists.
As far as Oxymatrine  -- I have no doubt that without it your counts will be even lower... but it does not act fast and as any supplement (not pharmaceutical drug) it doesn't have a reliable proof of active ingredients concentration ((since nobody controls it) -- so you take it at your own risk and hope for the best.

All the best to you, gauf

by gauf, Jul 03, 2008 09:52AM
To: Meki
You can keep the reds sweety, just send the whites....

by gauf, Jul 03, 2008 09:59AM
To: Tallahasse
No, I was not mislead at all. I knew I needed to get more nuepogen in me. Getting meds timely does not happen for me, so I was hoping the oxymatrine would buy me some time. I was taking 6 pills a day for about 2 weeks so if it is helpful, think those numbers would have gone up a little. Maybe it helped but......... we are all different and it certainly was worth a try. I will stay the course on the peg and hope that those wbc/anc rise quickly. Thanks.

by meki, Jul 03, 2008 10:20AM
Oh you blood racist you....


by gauf, Jul 03, 2008 10:23AM
To: meki
roflmao

by gauf, Jul 03, 2008 11:11AM
To: all
Just got the numbers, actually little change from last week.

WBC 0.61 4.0-11.0 k/uL L
  Rechecked, called to and read back by:oc Dr Edmison x26296 7/2/08 1732 JN
RBC 3.32 4.5-6.0 M/uL L
Hemoglobin 10.6 13.5-17.5 g/dL L
Hematocrit 36.2 40-52 % L
MCV 109.0 80-100 fL H
MCH 31.9 27-34 pG  
MCHC 29.3 32-36 g/dL L
  Repeated and verified
RDW-CV 19.0 11.7-15.0 % H
Platelet Count 46 150-400 k/uL L
MPV 10.7 7.3-11.1 fL  
Neut% 44.0 40-70 %  
Abs Neut 0.27 1.8-7.7 K/uL L
Lymph% 39.0 22-44 %  
Abs Lymph 0.24 1.0-4.0 k/uL L
Mono% 13.0 0-7.0 % H
Abs Mono 0.08 0-0.8 K/uL  
Eosin% 2.0 0-4 %  
Abs Eosin 0.01 0-0.4 K/uL  
Baso% 0.0 0-1 %  
Abs Baso 0.00 0-0.2 K/uL  
NRBC 1 0-  /100 WBC H
Meta% 1.0  -  %  
Realym% 1.0  -  %  
Red Cell Morph Anisocytosis  -    

by Trish77, Jul 03, 2008 12:15PM
To: gauf
It's at least comfort that your ANC hasn't dropped, I think it was .26 last time?  But still really needs to get up there.  Your lymphocytes are just above the lower limit of acceptable. I hope the mushrooms are "magic" although likely the neupogen will be and here's hoping.  You probably know this..you're a pretty savvy dude... careful on the mushroom dosage as apparently more lentinin is not more.

Good luck, gauf.

Trish

by Bill1028, Jul 03, 2008 01:31PM
I had a similar experience when I was taking milk thistle, vitamin E, and selenium.  My doctor told me to stop all of the supplements and reduce the peg.  I of course didn't reduce the peg, but did stop the supplements and the following week my whites were higher.  He again explained to me that especially with cirrhosis that there are too many possible and combination of side effects of understudied supplements to take the risk of having to stop treatment.  I wish you the best.

by scratchinghead, Jul 03, 2008 03:09PM
To: gauf
How are you feeling over all, besides the worry? Do you have energy?