bmb

[Guest guest]

Hi everyone,

I have had Cll/SLL since 2003. I did Chlorambucil in 2004

for 6 months. (I had a lot of B symptoms and my platelets

were low) That carried me until 2 years ago when I went into

a clinical trial of Rituxan and ABT-263. They are saying

I've had a complete response but need to do a bmb to confirm

what my blood and ct scans show. They don't put people out

for bone marrow biopsy's with this doctor. I've had 3 so

far, one I was out for and 2 I wasn't. The last one hurt

all the way through the procedure as I think she may have

hit a nerve. But, I have post shingles pain in my nerves in

my back and a bmb has always caused a break out even though

I am on 1000 mg of Valtrex daily. My question is, how many

of you do bmb's awake and who has used conscious sedation?

Am I being a wimp here? Should it hurt so much that I would

rather be put out? I have some anti-anxiety medication that

I could take.

Thanks for any responses. I read the post daily but I think

this is my first time posting.

Lori

[Guest guest]

Lori,

Only had one bmb almost 9 years ago. Fortunate to have no

treatments all of these years. I was not sedated although

doctor did put numbing meds in area. Told him to put more on

the second hip!! :-) Already had sciatica problem there.

Anyway, I had no tranquilizer or anything even though it was

offered. If I ever had a it again, I would take the

tranquilizer for sure. And yes, it hurt. Son had to have one

too and his hurt. We had different oncologists and were

never offered the anesthesia option. I didn't even know

there was an option!

You are not a wimp. We all have different pain thresholds. I

hope you find wisdom and peace in this matter.

Blessings,

[Guest guest]

Lori,

First .. congratulations on your great response !! That's

something to hold on to while going through the BMB

experience.

From everything I've heard, it's all about who does it. If

you can, make sure the person doing it has done hundreds or

thousands AND is well recommended. If you list where you

are getting it, perhaps someone can chime in. For me, I had

mine with Dr. Farouqui at NIH and he did a great job .. no

pain whatsoever. I may have been very lucky, but I also had

heard that he was " talented " with BMB. The actual process

itself doesn't take long at all. I would not want to be

knocked out for it and agree that being knocked out is more

risky than the BMB itself.

So share your location and maybe there is someone who can

recommend a good tech for you. At NIH, before Dr Farouqui

came into the room, the nurse on duty said their best BMB

person was a tech who had been doing it for years. Luckily

Farouqui turned out to be just as good.

All the best and let us know how it goes. Remember, it is a

quick procedure.

Lynn

[Guest guest]

Lori, I had BMB awake but I took 2 vicodin before and that

worked well. I am an old RN and assisted many times and the

person doing the BMB makes a difference if you are awake.

[Guest guest]

Lori,

I've had more than 6. The first done locally; all others at

MD, where I'm in my second clinical trial. The trial

sponsors seem to require them, and I'm scheduled for one

semi-annually. None have been painful to me. One time they

had me wait a while for my blood pressure to go down; but

now I just relax and enjoy it, ha! One lady told me that the

unit which does the BMBs for the leukemia dept. does a

hundred each week. When I asked her how many she had done, a

quick calculation was 6000 or 8000, something like that! I

have no doubt that some patients do experience pain, and

some doctors/nurses are more skillful than others. It's

terrible that you have had shingles recur. I pray that you

find meds that eliminate your anxiety.

Best wishes,

wayne

[Guest guest]

Lori,

Do you know if ABT-263 is one of the new kinase inhibitors

that interferes with the CLL signaling pathways? I wonder if

it is in the same family of drugs such as CAL-101 and the

PCI-something' I am curious re. the category of drug it is.

I am so glad you responded so well. You deserved a break!

R

Adks NY and AZ

[Guest guest]

Hey

ABT-263 is bcl-2 protein inhibitor. Not sure if it is in the

same class as those others you mention. I know it causes

apoptosis to cells with the bcl-2 protein which is found in

CLL cells.

Hope that helps,

Lori

R. wrote:

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