Help to build case for Doc not to reduce or stop TX

[MissMiss]

I go in Tuesday for 39 wk visit.  Tonight is 38/48, 1C, BX grade 3 stage 2, UND since wk 12.  HGB up to 9.4, HCT 28, Platelets up to 59, WBC are great.  On Peg 180, Riba 1000, 300mcg Neup and 80 Procrit.  Just had blood test for cryo as positive.  Riba dose started at 800, then reduced for a month at about 7weeks to 600 and one Peg shot in half.  Finally got rescue drugs and Riba increased to 1000.

Hep doc fighting for Neumega since platelets are staying down, I won't do a transfusion (don't beat me up there, please).

GI isn't the greatest and I'm afraid he will want to reduce Peg or Riba again or stop if platelets get too low. (Been watching Dale's posts on the platelets) I need help to build a good case not to lower or stop, especially in light of the positive cryo test.  Even wondering about extending til cryo doesn't show.  If I relapsed, I'm not sure how I would react.

Somedays I can hardly walk, especially after Neup and Procrit.  Can't eat much either but not loosing weight as I get the calories somewhere. My house looks awful!  No visitors for awhile, lol.

Might suggest splitting the Procrit to twice a week as NYG does.  IF it worked for her, might work for me.  

Other than that, any help or suggestions are greatly appreciated.  You guys are lifesavers and I love you all.  Thanks.

miss

[GoofyDad]

Mine were 115 or so. Advanced fibrosis can cause platelets & WBCs to back up into the spleen (they call it sequestered in the spleen). That's certainly not the only cause of low platelets. I'm not sure my counts will ever return to normal... we'll see.

[sfbaygirl]

How low were your platelets going into tx? Mine were low 130 going into tx, but no one ever told me why. Are you unplugged now?

What does a plugged liver do? Since my wonderful dr. didnt give me a BX I have no idea what I am dealing with as far as damage. I am sorta looking for a stage 0 when all this tx is said and done.  I know that's really wishful thinking, but this ignorance can be bliss!

[GoofyDad]

My platelets were low going into tx due to a plugged up liver. They went lower throughout tx - I got nervous about interuptions when they took a couple long slides that headed into the low 40's. Each time they turned around though, and my doc was pretty much unconcerned. Hopefully the Liver Rooter (AKA Interferon) will help clear the pipes now.

You might try emailing the author of that fierst article -- he might point you to more info.....

[MissMiss]

MBB, SFB, sjl, Thank you all for the encouragement.  I might be panicking for nothing but can't help it.  Think I will stand my ground and "Just Say No Reduction!"  Goof, the links were very useful, printed and will share with the doc.  

Goof, do you naturally have low platelets?  I remember your HGB problems but not platelets.  What are they now?  How are you since ending tx?  Thanks for the links.

miss

[GoofyDad]

I think 72 was my record high for platelets on tx. Here's something I posted once or twice before:

<i>Several prospective controlled studies have documented that prophylactic platelet transfusions are not necessary in patients with chemotherapy-induced marrow suppression until the platelet count is less than 10,000/

[SJL]

If at all possible do not reduce drugs. I feel this is a big part of lots of our problems. Might be wrong-but, it's only my opinion.

[sfbaygirl]

You are so close! My doc told me to cut my drugs today. I refused. I would try and make it. I have a GI that's not too swift either. Can you get a second opinion if he wants you to stop or reduce? You have come to far to put up with this.

Good luck and keep us posted.

[Mister beagle bailey]

Hi there, you know what I'm going to say. If you want to stay on the meds or not have it cut, you r only choice may be a trans.  I have had 2 done on tx because I wanted to finish and not have my meds cut.  This is a rough choice for you and what ever you decide I'm behind you.  

Beagle

[MissMiss]

Thank you, Dale.  Lowering dosage sure did the trick for you.  You have been so kind and supportive to us all I wish you the best as you "enter your teens" again!  Guess we all do what we have to do with this tx, don't we?  Have a great weekend!

miss

[Dale_Ray]

Don't worry about the house:) Nobody visits us anyway - ha! I am sorry your battling the common elements. I've had several people on Janis and here that have gone through the same thing and one of then stayed down around 30 and continued without dosage reduction or stopping. It depends on your doctor too. Mine is a stickler for following the rules and recommendations of the manufacturer. As you probably know I went for the unathorized reduction (about 20%) and platelets are up to 75 from 47 in two weeks. ANC is back in normal range. Not sure why but maybe reduction helped. Not something I wanted to do but didn't want to stop treatment most of all. Got my fingers crossed for you. After labs next week and if they are good I will increase back to full dosages again until they slide in the hole again. Have a happy weekend. Dale

[MissMiss]

HCV is 1b.  Just had C on my mind I guess.  Sorry!