my best wishes and hope for success.

do any more of the what ifs... they just add a lot of extra stress that you don't need right now!
Please let us know what you find out next week.

from recent chemo and that recent IVIG treatment produces a positive outcome.

And I wish that I could make the "waiting period" disappear.

I need you to stay nice and healthy, to give me some hope (no pressure )

My girlfriends mother had to get a stem cell replacement...at first, we couldnt find a donor but we finally did in Seattle. She had some mold host vs graft issues, but she is doing fantastic right now. Keep your head up/

p.s. Have they ever though of including Avastin or some sort of biological in your treatment? It's expensive as shit, but results have been promising.

Plates boosted a little - from 60k to 72k. Not a lot, but enough to let me have chemo on Wednesday (we don't do it if it's below 70k). So just barely in there. I guess that's a good thing.

Followed you from the other thread. I go see my CLL specialist next week at UCSD. I'm always a wreck and my husband and I are usually on the verge of divorce before we get there! Not really, but it IS stressful.

How did your chemo go? I had a BMB done at the beginning of last year and my bones now are impacted with 60% crappy cells. When I was first dx'ed in 2007, they were 30%. So Dr Castro said we'd have to do something probably soon. Well, here it is in November, so I'll prolly need another one - they're really no big deal. I've been on W&W all this time. When they were handing out shitty immune systems, I got the short straw. Everything I get is chronic, oh joy. Also have Sjogren's Syndrome - now that's a bitch!!

I had emergency brain surgery this past May (unrelated to the CLL - a mengioma that grew out of control - some "atypical" cells appeared, another story for later). So, when I went down last June, the doc said just to recover from the surgery and I was supposed to see him last August. Talk about procrastinating! I'll start my own thread soon, didn't mean to hijack yours!

So how did it go? Take good care, Jennifer
G'nite all...

as posted. I've been getting it all year, except when platelets didn't cooperate (which they haven't, the last two months). So I managed to get one treatment in. The thing now to watch out for is whether the platelets stay high enough (and they were just barely high enough this time) to get me subsequent treatments.

Hang in there, it sounds like you're going through a lot.

Unless they magically get back up over 70k by Tuesday (unlikely) no more chemo.

This sucks. The chemo destroys your ability to get chemo.

Targeted gene therapy would be the way to go, but it costs upwards of $100k to get sequenced, and I don't have that, and certainly insurance won't pay for that.

There are no two ways about it chemo is destructive. I remember that I was put in the hospital twice while in chemo because my blood counts were critical. I am sorry but I do not remember if my platelets were involved or if any of the transfusions addressed low platelets counts. It has been too long ago. It just seems to me there must be something to help get your counts up.

It is unfair a treatment is withheld because of insurance.It's wrong on so many levels.

There are two causes of low platelets. One is that you successfully make platelets, but a portion of your immune system kills them off after they're created. For that, you can have an immunoglobulin infusion (which I did the other week) which basically creates decoys that get killed instead of the platelets. We did this, and my platelets went up to 72k, which is not huge, but it's something (a really successfull infusion would have kicked it way higher). So that's part of the equation.

The other way you have low platelets is by having a shitty bone marrow. You would test this with a bone marrow biopsy. That's probably my next step. Then, if it's confirmed that the bone marrow is damaged, I think the only recourse is a bone marrow transplant.

I'm not aware of any other avenues. Actually, that's not true - steroids could help, but because I have chemo-induced diabetes, I can't take steroids - they exacerbate the situation (and actually create it to begin with).

Platelets have not been cooperative, so we're going to do a higher immunoglobulin infusion (2.5x higher), and drop the 5-FU and add in Avastin. Since they did respond to the IG IV, although not incredibly, it was still a low dose and thus expectations are that it's IPT (where your system tries to kill your platelets) rather than totally trashed bone marrow (although I presume mine is trashed to a certain extent). The upshot is that hopefully the higher infusion will allow my platelets to get up to a decent level, and that by backing off the chemo I might actually be able to stay able enough to continue to receive it.

IVIG dose does the trick for your platelets. Maybe they'll run it at a slower infusion rate to avoid any side effects, first time my husband had an IVIG treatment they had to stop, run tests and then restart. In the long run a slower rate might have been better all around. Let us know how it goes, positive thoughts coming your way

Ohh Very sorry to hear about it. I remember that I have donated platelets to a man once in life. I don't remember what disease which he was suffering but my friend asked me to save his life and I donate my platelets to him. The doctors attached me with a machine by a needle in my arm. Its more painful then a blood donating.

Platelets have a short shelf life (I think, 4 days), and they're invaluable, so I'm sure you saved someone's life that day.

Maybe no one cares, I don't know - don't want to whine. Platelets did not go up - in fact, platelets are down, WBCs are dangerously down, can't go forward. Have had only one chemo in 5 months (or maybe 2). No good news. I don't know why the fuck I bother, honestly.

better equiped than others for complications and difficulties.