The Leukemia & Lymphoma Society Community: Message List - My next step???

Re: My next step???

communityreply@lls.org — Mon, 20 May 2013 20:55:11 GMT

Karen

When they measure your cbc they are measuring the concentration of blood cells in a certain volume. This concentration is the result of both synthesis and degradation. The half life of RBC is 125 days, Platlets 9 days and WBC 12 hours. We could write a series of equations to calculate your actual rate of synthesis. I actually did this for Kathy.... her attending was impressed....Sounds like your marrow is slowly making cells. I would not worry about the blasts in the peripheral blood unless they id them as leukemic blasts. With Gcsf you will see blasts in the blood; truth to be told we all have blasts.... in leukemia the number and the health and shape of the blasts is out of wack.

The real test of the chemo is a BMB when your counts are up. When are they doing the next BMB? KAthy had 1 at 14 days post first day of chemo . Do you have netflx you could spend some days catching up on all sorts of shows.

Re: My next step???

communityreply@lls.org — Mon, 20 May 2013 20:12:47 GMT

I had 3% blasts in the marrow on day 14 of induction, considered more likely the result of G-csf, and in hindsight, must have been. My records noted the increase in myeloid blasts was "favored to represent recovering marrow with possible growth factor effect, minimal residual leukemia cannot be entirely excluded...". "Rare blasts" in PB were "more likely immature normal cells." What I was told was "no leukemic cells found" and not about any blasts, which I would have asked for an explanation about and worried a bit.

I received G-csf shots in the first consolidation, but only during the 4 days of chemo infusions. And my WBC and ANCs shot-up way high again, before a 0.03 WBC nadir. G-csf was listed in my PBSCT protocol, which I assume I received through my donor's stem cells collection. Despite my pattern of "overexuberant" responses to G-Csf, I didn't have particular WBC increases with my SCT. Or any report including blasts since induction 14 months ago.

So hoping for more good news.

Re: My next step???

tex_silver@yahoo.com — Mon, 20 May 2013 19:18:55 GMT

I agree it looks like you're producing some RBC and that should be good at this point. So, yay for that! I'll also bet that the gcsf is behind at least some of the PB.

You know, I never showed any signs of responding to that except for producing a fever of up to 106. We actually never found out for sure what the fevers were from but I'm sure it was the Leukine which they don't seem to use much anymore. I had no response at all to the factor they used on me in Seattle.

So, I see nothing to be depressed about. It's just the joint weighs heavily on folks. You'll be sprung before you know it. Well, before I know it anyway.

Hang in there.

Re: My next step???

communityreply@lls.org — Mon, 20 May 2013 18:45:21 GMT

Well, today Hgb was 8.1. The fact that it's falling so very slowly would indicate that I'm making at least some red cells. WBCs were 1.1 with ANC .1. BUT the possible bad news is that there were some peripheral blasts. The PA said it COULD be because of the Gcsf and that the cells are normal. So they are stopping the Gcsf for a couple of days to see what happens. Now of course I know that stem cell donors get a much higher dose of Gcsf to force cells into the periphery, so of course I'm depressed. Wah! :-(

Re: My next step???

tex_silver@yahoo.com — Mon, 20 May 2013 17:10:38 GMT

They always went off my HCT at the Hutch so my HGB got below 8 every now and again. I started with 5.5, I think yours was lower? All to say, you might be wiped out but they're going to manage that. Anyway, how alert and peppy do you have to be for that crap that constitutes hospital TV? I swear, every channel is designed to make you want to get the hell out of there. It's a commie conspiracy!

I think you've hit nadir. Your WBC certainly shouldn't get much lower than it is at any rate. So, nowhere to go but up! This might be the worst you feel...at least until after your transplant. But let's get you there and worry about it when we arrive.

Hope all is truly well with you. Please keep us posted.

Blessings

Re: My next step???

communityreply@lls.org — Mon, 20 May 2013 00:03:11 GMT

Karen

Boring is actually good at this stage of the treatment. There are so many things that could go wrong... It is great that so far so good... Kathy had many different unkown rashes, fevers and 2 trips to the ICU during induction..... I longed for ennui. Until you have some WBC you are right where you need to be. Take up a new hobby the NBA playoffs are happening right now...

Re: My next step???

communityreply@lls.org — Sun, 19 May 2013 21:00:27 GMT

Thanks, Warrior. Well my WBCs did tank suddenly and down to 0.1, where they stayed for about 4-5 days. Now they've started to climb: today they were 0.5. They don't seem to have done a differential, so I have no way of knowing what the ANC is. Interestingly, every other time the first thing to recover were platelets, but not so this time. I MAY be making some RBCs, because they are hanging out in the low 8s. (They have new protocols allowing Hgb to go down to 7 in-hospital.) I got so used to functioning with Hgb around 10, that I'm not really "happy" now. My main problem is that I'm excruciatingly bored and of course am not exactly filled with vim and vigor. I want "out" so badly! :-)

Re: My next step???

tex_silver@yahoo.com — Fri, 17 May 2013 16:04:42 GMT

Nice story. When he mentioned the groups that wandered the halls, I thought back to the Hutch. There was one attending who seemed to always have the hospital rotation. She was there every day I was for two months.

She had a huge group of puppies that followed her from room to room. Like in the article, they'd huddle outside a room before going in. The thing is that they took up the hallway. Whenever I went for my morning walk around the floor, sure enough they were there blocking the way. No one in the group ever thought maybe they should move a few inches to let me pass so I had to go barreling through their little conclave.

Thing that bugged me was that everyone in this doctor's group seemed to have that attitude that "We're doctors and you should just wait for us to clear the floor. We can't be expected to notice you."

Turns out there were a few things I didn't like about the Hutch. But the other doctors and their entourages didn't take up the whole floor, they kind of collapsed allowing people to pass.

This is irrelevant to Karen and nowhere near the point of the article but it dragged up a memory that I never got to adequately bitch about so now I have.

Re: My next step???

communityreply@lls.org — Fri, 17 May 2013 02:53:50 GMT

Hi Karen

hope all is boring. In todays NY Times there is a great little article about waiting for counts to come back. It is so true

here is the URL http://well.blogs.nytimes.com/2013/05/16/seeking-calm-on-the-cancer-ward/?ref=health

hope the induction works this time

Re: My next step???

tex_silver@yahoo.com — Wed, 15 May 2013 14:46:37 GMT

You know vampires can't be out during the day. They only come out at night. So, yeah, they have to wake you up. That follows, doesn't it? Hell, I had a Hickman, just take what you need and leave me the heck alone!

Glad you're feeling perky. I miss perked coffee. Oh, well.

I actually found that with Ambien I would wake up after a few hours whether they did it or not. Then I couldn't go back to sleep. That's actually why I was taking it with Ativan and, later, Xanax.

Anyway, that was still a pretty good theory, even if it was literally impossible that it happened.

Blessings