CLL Support Association
10,284 members15,955 posts

Infiltration = BMB?

Hi,

A few questions :):

when the dr says s/he wants to check "infiltration", is that something that can only be accomplished by BMB?

for a patient not in treatment without symptoms, how important is "infiltration"?

photos.app.goo.gl/LrGGm6t4T...

THANKS

Restricted to the community in view of personal medical information shared

26 Replies
oldestnewest

It depends what she is refering to by inflitration.

Certainly CLL infltrates the bone marrow, but it can also infiltrate other organs... most notably the liver, kidneys, stomach, colon, and very rarely the brain.

So, you need to discipuss exactly where her infiltration focus is. Probably bone marrow, but you need clarification.

~chris

3 likes
Reply

Yes, he wants a BMB to check "'infiltration" or CLL "infiltration". ?

Does that clarify? I'm hoping you guys can tell me what he meant.

Reply

...does BMB detect infiltration in other organs?

Reply

So yes, your specialist is checking how much of your bone marrow capacity has been reduced by your CLL infiltrating it.

Other organs would need to be specifically tested.

Neil

1 like
Reply

Thanks, sorry, didn't mean to be obtuse. :)

So I don't need him to be doing that (BMB) to check other organs' problems.

1 like
Reply

If other organs are possibly an issue then biopsy of that/ those organs might be indicated. Otherwise I would assume that your doctor is looking at the bone marrow. Is your doctor a specialist? Dr. Asher Changan Kahn in Jacksonville and Dr. Padilla in Tampa would be good choices for a second opinion if one of them is not already your doctor. As you requested that past posts be locked you might want to lock all of them.

3 likes
Reply

Hi tedro:

The other replies are excellent. I want to answer your question for a patient not in treatment without symptoms, how important is "infiltration"?

If your bloods are normal - especially all your Red Bloods- HCT, HGB, platelets, it would seem strange to trigger a BMB to check infiltration. It would generate a number but not be useful for treatment etc.

If your platelets are low or HCT or HGB are falling, then your doctor may be trying to sort out ITP or AIHA see:

ncbi.nlm.nih.gov/pmc/articl...

As suggested by the other replies- if your doctor is a CLL expert- he/she should be able to explain exactly why a BMB is indicated, and what specific problem is the concern. The experts don't use BMBs to monitor routine progression, they only use them diagnose & treat strange problems.

If the doctor is not a CLL expert, and does not explain clearly what is the issue- you should get a 2nd opinion before agreeing to a BMB.

Len

4 likes
Reply

Yes I agree. Avoid BMB if you can, very invasive and was painful for my husband.

2 likes
Reply

I hope I'll be avoiding much more than that.

I'm glad, I guess, to know what I know now, but I don't see yet where they are going with this. ... i think that with CLL: no symptoms, no treatment. period.

I still don't see anything that says otherwise. Do you?

1 like
Reply

I agree. I once viewed a podcast of eminent CLL specialists. One of the things they emphasized was that CLL is an illness that presents in a GENERALIZED manner: for instance, my husband had many enlarged nodes, high WBC low everything else, and his BMB showed very high infiltration. It was a package.

Reply

Thanks everyone!

--no, he's a hematologist at Florida Cancer Specialists, and not a CLL specialist, afaik. I will ask directly next time to confirm and to also request.

However, just like I did 8 months ago, I think I should probably just stay away from them unless I have symptoms.

Here's my tests (these are 6 separate images in a googlephotos album in somewhat of a chronological L to R order, please be aware of dates):

photos.app.goo.gl/LrGGm6t4T...

--No, I don't care to lock it. THANKS

Reply

Hi friends,

Please see my post just above with link. I forgot to put in the link earlier, and, I edited what's in the link as well.

Thanks

Reply

Tedro, you say you don’t care to lock the very personal medical details you’ve posted on here but I’m afraid I must do so on your behalf. The information contains not only in-depth blood results but your full name, age, dob, Clinic name and address, name of attending physician etc. To put this level of information out there for possible widespread internet access and possible abuse is extremely unwise and the Clinic, lab and physician involved may take exception.

I’m afraid this post must be restricted to the followers of this community for those reasons.

Newdawn

2 likes
Reply

All identifying data has been redacted.

Can you open it back up now, please?

I have information "out there" believe me. I have a website with hundreds of military and court documents freely available...with my name dob, ss#, address, all kinds of medical and military actual records.

FYI: You don't have do any security on my behalf. I made those personal privacy decisions LONG ago.

I am an ex Apple tech (before they had stores); ex military. I know exactly what I'm doing. And the clinics, doctors, labs, have no legal standing to stop me sharing my own records --- that includes all informaton on my results as delivered to me. phone numbers/addresses. That was their choice. There is no law here in Florida, USA, that says I cannot share my records online.

Reply

You have the ability to lock or unlock your posts at any time. But etiquette is that you never unlock a post of yours after people have responded to your locked post - out of respect for their privacy. Just select the 'v' under your post and select 'Edit' and select what option you want at the question "Who can see my post?" (which should always be to making it locked rather than unlocked).

Sadly, we are vulnerable to discrimination, irrespective of any legislative protection, with that by employers and insurance companies of particular concern.

Neil

1 like
Reply

Thanks for the helpful reply, Neil.

-- I have to ask, who's "we"?

Reply

Read the results and feedback from our poll on this topic: healthunlocked.com/cllsuppo...

1 like
Reply

Thank you, that's a great link. ...

I'm very familiar with the topic, personally, having prevailed in a decades long Federal lawsuit against the US (published); and, another, 20 years later, local, Federally filed, lawsuit against the county public school district -- they paid me, after being deposed, a lot money and there is no NDA in that settlement -- I insisted on that.

The former involving, in part, stigmatization vs due process; the later, a separate but related case, was filed under the ADA (Americans with Disabilities Act). ...1983 - 2005.

- I should write a book. And yes it virtually ruined my life...even though I prevailed in both. Btw, lawyers would not help me, I had to do it myself (pro se, my Mother typed; later my second wife typed). ... I finally quit, so "they" (US) "won," too. It wasn't a pretty path and I do not recommend it.

1 like
Reply

I believe we should stick to the rules here. All personal information should be kept that way. We all ask questions, we all get answers. That's what this Forum is about. No need to know full names, SS #'s, doctors names, etc.

2 likes
Reply

I wasn't aware I broke a rule. Is this forum supposed to be anonymous posting only?

Why would anyone complain about someone posting (allegedly?) their own name, age, dob? real or not.

If taken prisoner in war, I can give that much...and more...even my service number was my SSN.

I see lots of posts with Drs names and faclities info.

Strange.

BTDT

Sorry it turned out this way.

Reply

Tedro: Perhaps you're unaware that by choosing to UNLOCK your posts you automatically leave UNLOCKED all replies to your posts.

This may be a decision that you're willing to make, but it's not a practice that's helpful if you're asking for answers from people who, in the great majority, are unwilling to make their responses available to all-comers.

For example, if I've information that you've asked for ... I'll probably not provide it if you INSIST on leaving the doors open for ALL to see our communication.

So, you see, you lose by not following this community's etiquette.

4 likes
Reply

Hidden, Caven is absolutely correct and I have amended my reply to you above accordingly. You should never unlock a post that has been previously locked and replied to...

Neil

1 like
Reply

I never locked it.

And this is not atypical behavior, here. Go pick on somebody else.

Reply

What rules have I violated?

You can always DM sensitive replies.

Reply

You are correct. We do give information on the state of our health, sometimes a doctors name or facility, but we/I only use my first name. I think most of us would agree with caven that when we reply to you everyone can see the replies. You can learn a lot on this site, however, we do have rules as such here. We want an environment of calm as we are all in this together. We want the best for you and for all of us. I believe you need to stop and think about that and if it doesn't meet with your approval, you can always move on.

4 likes
Reply

Not every group is a good match for everyone.

1 like
Reply

You may also like...