Re: ALC Doubling & treatment

[Guest guest]

Karni,

I am disappointed for you. I am wondering if you can ask one

of our experts if one of the new less-toxic tx like Cal-101,

ABT 263 or PRl- would help you, or the immune modulator

revlimid. It would be nice if a CLL expert could explain why

any proposed tx. is more likely to help you. If I am

remembering correctly, you were seeing a CLL expert? Stay in

touch with us all.

R

Adks and AZ

[Guest guest]

Karni,

I am not a doctor, but my husband has been multi-treated at

MD . He has always been a trial rat and so I am

somewhat educated about the latest and the greatest

treatment for relapsed patient's. I would really look into

the PCI trials for your treatment. I'm not sure if you

would qualify because you have to have failed certain

treatments. I am sure there is a trial using Btk out there

for you and your particular situation. I believe after

listening and reading feedback on the inhibitor trials, that

PCI is working much better then CAL101. Almost all relapsed

CLLer's are seeing fantastic results from PCI while they are

taking it. I don't really know what happens when they stop

taking the pill but I do know that no damage is being seen

at the one year mark of taking PCI.

As of yesterday, my husband's blood counts are almost all in

the normal ranges and that is a first since his dx in 2004.

His platelets are now at 150 and it seems, at least

temporarily, that PCI has strengthened his Red Blood Counts.

For the first time since FCR in 2004, his Red Blood Count

was 4.5 and his Hgb went up to 14.5.

Please ask your Dr. about his thoughts on the PCI trial or

something similar for you.

[Guest guest]

Karni,

I see Dr. Hamblin has already replied and has a timely

article also. And for what it is worth, I had RF in 05. My

counts began to gradually increase less than a year after

completion of treatment. They continued that way until Jan,

09 when they jumped to almost 200K from a couple of months

earlier when they were just about 120K or so. But without

doing anything they dropped almost as fast. And now almost

three years later, I am approaching 200K again. But

gradually.

I know you won't and your Doc wouldn't advise you to get

treatment too early. But I remember that I didn't feel well

after seeing that jump. It has to be a bit depressing for

you also. Let's hope your situation works out like mine and

you have years, not months before additional treatment.

Treatments are getting better. But I think all of us agree,

than no treatment is better yet.

[Guest guest]

Thanks, everyone who wrote me about my post from last night.

I apologize for not responding personally right now, but I'm

stretched in too many directions right now. It was late

when I sent it, and I failed to include the facts behind our

considering treatment in the near future.

Neither my onc nor I are in a hurry to treat, for sure. My

Hgb is at 11.1, down from 12.3 in January of this year, but

then it's seldom been above 12 since diagnosis or first

treatment. My WBCs were only at 29 last week, nowhere near

high enough to require treatment by themselves, because I'm

otherwise feeling fine. It's just that the previous CBC 3

months ago showed that my ALC had doubled in a little over 4

months (4.2, to be exact), and this one showed an increase

in less than 4 months (3.9). So my ALC doubling rate is

dropping (i.e., the count is increasing more quickly), and

our expectation is that they'll continue at an exponential

rate. This is what they did 3+ years ago. Yes, the WBC

count isn't high, but the curve upward is getting steeper.

We felt 6 weeks would be a reasonable time to retest.

In a case such as this, I think the point of treatment,

expected at this rate to be sometime in the next half-year

unless something changes, would be to avert marrow failure

and to avoid a trip to the ER and emergency treatment.

That's my understanding.

Best wishes to all of you, and I hope to respond

individually soon.

Karni

dx Nov. 2003 at 59 yrs, asymptomatic

Trisomy 12, CD38 42%, possibly familial (mother had CLL)

tx F/R 2008, feeling well

ALC increasing again