WBC drops 120k in 3 days on CLB

August 1, 2008

Well this is very good news! I went today to resume my protocol and *before* I began the RTX I got my bloodwork results. I have just completed (after 3 weeks of no RTX or ChLoramBucil) 5 days of 20 mg. Prednisonse and only 3 days of 4 mg. CLB: let's compare, shall we? The first set of numbers is from last Monday *before* starting the CLB again on Tues.....

July 28th, Monday

WBC 217.7

HGB 7.3

HCT 23

MCV 115

RDW 29.1

PLT 70

%lymphs 75

In here...20 mg. of Pred. x 5days and 4mg CLB for 3 days.

Aug1,:

WBC 119.4

HGB 10.1

HCT 32.2

MCV 111

RDW 15.1

PLT 57

%lymph 57

Thats an effective result of CLB albeit with some traces of RTX still floating around from 32 mg 3 weeks ago.

Today, I did 32 mg. of RTX and had my usual mild nausea and headache at the very end but that was alleviated quickly with 12.5 mg. of Benadryl. I'll bet my numbers on Monday will be even better.

,

I am not offended at all - I'm quite confident in what Im doing - so far. Like I said, things may change. I think the above numbers speak for themselves.

But you may have the wrong impression. I will hardly medicate myself to death - I avoid most of the medication regularly given and only take small doses of what is given. Im 5'6 and 121 lbs. Fifty mgs. of Benadryl, e.g., is far too much for me,as is a full dose of nearly any other med.

I appreciate your candor and can tell that you care and that you feel frustrated with what appears to be a reckless attitude toward chemotherapy. I assure you I am anything but reckless. In fact, I think avoiding the elephant in the room that is p53 in favor of a one-size-fits-all protocol like FCR or Treanda is wildly reckless, given the studies themselves.

Other cytogenics may not carry so much weight in decision making - not true for p53 and I am not going to pretend that it doesnt matter, based upon the medical literature and studies Ive read. Patients with p53 are getting treatments that leave them with a very aggressive cell line and are dying fast and early and soon after harsh treatments. I think it's the treatment per se, not the p53 per se. Campath does a good job in spiute of p53 but still, that's a last hurrah.

I am coming of the opinion that aggressive protocols for p53 when all the studies indicate that something quite different needs to be explored in these cases is beyond reckless. If it's all experimental with p53, and it is, and if studies hold all the reasonable answers, then why do we not abide by the findings therein and do something different for p53 patients? I dont find that reckless, I find it sober and brave. If I follow common protocols and beleive studies and the statistics derived therefrom, I KNOW how soon I will die, and not how long I may have a chance to live.

My WBC is not going to kill me. Infection, too low hgb and thus heart attack, or too low platelts and thus aneurysm or some ilk is though. My plan is to avoid putting my body in such a state as to have to fight those monsters for the majority of my short time left. Why is that unwise?

And i think I have a terrific attitude! The other patients sure tell me I do and they are inspired by my positivity. Perhaps it does not translate in type.

Yes, Im going to die. I dont say that with a long face! I dont weep daily, or weekly even about it. Nor do i clap my hands. But I say it b/c I am a realist. CLL is terminal, always, short of BMT which doesnt work well on CLL patients anyway. The very experts you would have me consult are the ones who keep telling me Ill be dead in 3 years, then 2 years, then lucky to make it 15 months.

BMT is not currently an option for me. I do not have caretakers.

I understand completely where you are coming from, , truly. Many have wanted to shake my pretty little shoulders and get me into a more " serious " course of treatment. I appreciate your stance and feel you are entitled to your approach to this disease. Mine is far more conservative and gentle, holding the big guns until they are needed. I am not alone in the medical community in this regard. And I am also very used to swimming upstream, so while its hard, its not foreign or prohibitive to my end.

I only hope that my choice to take educated control of my treatment and use an unconventional, conservative course won't harden you and others into refusing me help when I ask. I dont have all the answers, I admit. All I have is the same stuff the oncos have, and I have come to different conclusion than the majority of them. That's okay, I hope.

BTW, I remain open to anyhone here or anyone wiht medical training to talk with me about effective, lower risk options for p53 patients that can offer better QOL and longer OS over my current protocol. Studies that used unfair micro, micro doses of single agent CLB against another drug do not count as good science to me. Apples to Apples please.

Hey, we do agree on the villain behind my disappearing hgb - the spleen. I have not looked into splenectomy yet. I've grown kind of fond of my spleen and want to try to hang onto it;-) But if it wont cooperate, out it goes!

Also, if any CLL patients here have a Facebook, and want to make CLL friends, my Facebook is Jane Eastwood Rowland. Id love to see you and your families and get to know you better. I may start a CLL group too.

Peace, friend. We're all in this together.

Jane

August 1, 2008

Jane tried to find your Facebook account, could not.

From: [mailto: ] On Behalf Of jrowlandSent: Friday, August 01, 2008 5:48 PM Subject: WBC drops 120k in 3 days on CLB