BMB

[Guest guest]

My husband just went through two BMB's and they were not able to get any

fluid stating that it was " clotting " too quickly to get the fluid. Does

anyone have any insight as to why this might be? He also is covered with a

rash today from head to foot, apparently from something injected during

these attempts. He is trying Benadryl to bring the rash under control, it is

helping the itching but the rash so far remains. Is there something more we

should do about the rash?

[Guest guest]

Hi Lori,

I've also had 3 bmb and the last one was EXTREMELY painful.

The physician's assistant asked me if I wanted to be put out

and I told her NO, but if I have to have it done again, I

think I will.

Best of luck to you.

[Guest guest]

Hi Lori

You are NOT being.a wimp! I was really scared before my

first one in June. They gave me i.v. Ativan. I don't

remember the actual procedure, which is great in my book!

It was just supposed to take the edge off so they gave me

half a dose and when I was still nervous they gave me the

other half. I don't think it's unreasonable to ask for

something besides the local.

Pat

[Guest guest]

Lori - This is such a personal issue which depends on many

factors, like the experience of the person doing the

procedure, your tolerance for pain, and your mental state

when doing a procedure like this (I panic now and honestly

can't say how much of my reaction was due to pain and how

much was simply due to panic - the doctor was very good). I

was told the last time I had one that they don't like to do

full sedation, which I would have loved, because it's more

dangerous than the procedure itself. I have one coming up

and told them I want Ativan - LOTS of ativan. It means

finding a driver or staying over in a hotel, but that's

fine. Other people breeze through them with nothing.

[Guest guest]

Lori,

luckily I've only had one, and that at Mayo. mine was done

with only local, shots. it hurt, but not intolerable, to

me, and was over in minutes.... I walked out and went on

with my day, it was sore for two weeks, a promised but that

would be the same whether you are out for hours or not....

sedation by infusion will take hours to get over.

I was told to have bmb done ONLY by experienced nurse /

techs who do nothing but that..... that's number one.

I was advised that if one relaxes thru it, and remembers

that it will be over in a matter of minutes, it's easier,

that those who are able to do so do fine.

however I have known some where a sample was not easy to

get, and repeat tries were needed.... If that had happened I

might have wished I'd made a different decision... those

instances are not common however, and I suppose one could

opt out and reschedule if that were the case.... thereby

saving yourself anesthesia if you don't need it.

I got good advice, and tried very hard to just think about

something else. the feeling is actually more like

pressure, or hitting your elbow hard,,, but again , it's

over very quickly and most techs talk you thru it so you

know where you are.

good luck,

beth fillman

[Guest guest]

Thanks everyone for responding. Ellen, I didn't get a

complete response with the Chlorambucil back in 2004 when I

did it. I left that doctor and started seeing Dr. Kipps in

San Diego. He followed me for a couple of years and then

when my platelets went really low he said it was time for

treatment. I live in Arizona so we met with his nurse and

went over different clinical trials. She suggested the

ABT-263 one and we researched it online. They were just

starting one in Tucson so we went down there and 2 years

later here I am. According to my blood, lymph nodes and

spleen they are calling it a complete response. When I

started the trial my bone marrow was 90%, after the first

bone marrow biopsy after that it was down to 30%. I can't

remember when that second one was. This will be a full 2

years for the one they are going to do on August 1st. I'll

be sure and post the results. Even though the trial time is

up in August they are extending me so I can stay on the drug

(at their expense) and just see the doctor every 3 months.

Not sure about the IVIg though. I haven't had it the last

few times I've been down there and have had no infections.

This ABT-263 has been like Gleevic is for CML in my case any

way. Really amazing.

So, I have some oral Adivan I can take, do you guys think

that would help?

Lori

[Guest guest]

Lori,

I've had 2 BMB's. The lst was with sedation and went very

well. The MD took his time and made sure the anesthetic was

taking effect before proceeding. I also had some valium. The

2nd one was done at a major CA center in NYC and the MD

swore that the person doing it had done thousands and was a

very skilled technician. I had no sedation and had no pain.

I think if the person doing it is very skilled and has done

many BMB's over the yrs I would be convinced but if not I

would definitely want sedation/anesthetic etc. I think if

someone gave me a choice, I would go for the sedation etc.

That's my personal choice though, and I do think it is a

very personal decision. I did see the specialist in AZ you

recommended while I was out there and had a really good

experience and thought He was very knowledgeable etc. It

turns out that he interned with the specialist I saw in NYC.

Such a coincidence. But, they came up with some lab results

that I question and will discuss when I see my heme/onc here

in August. I digress, so good luck with your BMB.

R

Adks NY and AZ

[Guest guest]

My husband had two bmbs and no pain with either one. He

received conscious sedation, but could talk at all times.

They allowed me in the room both times. They were done by

nurses at Mayo Clinic.

[Guest guest]

You guys have nothing on me.

Since I was diagnosed 12 1/2 years ago, I've had a number of

bone marrow biopsies. 21 to be exact. I had the last one

last week at Stanford, a nurse practitioner named Rhonda

did it.

The first one I had was probably back in 2005 or so. Dr.

Kipps has done some, his former nurse practitioner Kathy did

a few, MD did one, and so on. They have all been

painful, though Rhonda from last Wednesday did a very good

job.

I hate them. I ask for two Percocet tablets. I find the

maximum pain relief is about 45 minute to 1 hour and 15

minutes.

I asked Rhonda why they didn't use anything stronger, such

as Versed, and she said if they did, they had to have a

respiratory person on hand, and it was too much money to do.

Some doctors hand out BMBs like they are candy.

[Guest guest]

They use liquid Versed on me at MDA for about the last 5/6

BMB. I have not had a specialist and it helps so much!! I

will never do one again without it.

Good luck

Carol Ray

wrote:

/message/15585

[Guest guest]

UCLA requires that your BMB be done in the hospital if they

are going to knock you out. Otherwise it can be done in the

doctor's office.

Pat

[Guest guest]

I have only had on BMB too.. mine was done by the doctor.

Very little pain and ached for about a week. I took no meds

for it and had a few vicodin afterward for a day or so.

Mostly I just breathed deeply and distracted myself talking

to the others in the room. They were actually impressed that

I was distracting myself and entertaining them instead of

them distracting me.

[Guest guest]

Thanks, Lori.

I found out that ABT-263 is not in the same class as the

kinase inhibitors which is very interesting. This means we

have yet another class of drugs in our arsenal. I am so glad

it worked for you!

Chris

Lori wrote:

/message/15579

[Guest guest]

that is a real record, and I thought I had a few

having had 8 since diagnose back in 2002.

I think I must have been very fortunate as I do not consider

mine were painful, perhaps a little discomfort, I always

thought I was lucky to have experienced people doing them.

Two done by Prof. Hamblin, which I remember seemed to be the

faster and smoother ones, I had two others done one by a

male consultant and another by a male registrar, then the

other ones all done by woman doctors, the last one was what

I thought a very young lady and I remember saying to her,

" but you are so young " , she thanked me for what she thought

was a compliment, but I was actually afraid she might not

have the experience and that was going to be my painful one,

but it wasn't, when I said to her how good it was and no

pain at all, she said women are gentler doing that type of

work.

Regards

Chonette

wrote:

/message/15585

[Guest guest]

After my bmb, I had no pain that day or any day following.

I had been concerned because I had to fly from NIH to

California two days later .. no problem at all. Could be I

have soft bones .. who knows. I do know that I remained

relaxed through the procedure, or as relaxed as I could make

myself. I just let it go, did a disconnect and chatted a

bit. Perhaps minimizing muscle tightening helps in the end,

so to speak. Lori, best of luck.

[Guest guest]

Have had five bmb - 1984 when possibility of polycythemia

vera arose, then 2005 - 2010 at CLL diagnosis, before

treatment, and after treatment for marrow MRD eval (was

positive, but only 0.04% CLL cells/WBC.

All were done by doctors with extensive and current

experience. Worst bmb's were most recent: my Hem/Onc (a

great guy/physician) tells jokes during the procedure - some

of which are so bad they are painful. No physical pain to

speak of.

Tim Klug

[Guest guest]

Sounds like Molluscum Contagiosum a viral disease caused by

the MCV virus for which (I believe) so good systemic medical

therapy has yet been identified.

The disease is contagious, but the lesions (in people

without immunodeficiency) are often left alone (they usually

eventually go away) or treated with either cryosurgery

(freezing..often with liquid nitrogen) or surgically

removal, especially if located in uncomfortable areas.

You probably could get better information from a

Dermatologist.

Good luck,

Rick

[Guest guest]

Hi everyone,

Well, I am going to have the bmb at the hospital and be put

out. I guess I am a wimp! But, I have post shingles

neopathy (?) in my back so my nerves hurt all the time. I

broke out in shingles, even though I take 1000 mg of Valtrex

daily, after the last biopsy. I commend all you brave folks

out there who breeze through one of these. It will be great

to find out what the ABT-263 has done thus far. I also did

4 rounds of Rituxan two years ago as part of the clinical

trial. Thanks to everyone who responded to my post.

Lori

[Guest guest]

Lori .. you are NOT a wimp. Anyone doing a clinical trial

is VERY brave in my book. Thank you for doing

participating.

All the best to you,

Lynn

[Guest guest]

I don't think you are a wimp at all they scare me every time

and I have had at least six now I take strong meds now like

morphine and I hate to take any meds and I still feel it!

One time I didn't take any medication because I waited all

day for them to do it and I had my daughter with me who took

a day off from work and they said that they didn't have

time! Never again!! I will come back even if it's a two hour

drive! We go through a lot with this illness but one good

thing I can take any test or biopsy now no problem because

nothing is that bad! Best of luck!

[Guest guest]

Lori,

Let us know if they determine if the ABT was successful for

you. You made an informed decision re the BMB and that is

the best you can do. No such thing as a wimp in this case; I

agree with Lynn, you are very brave thru all this.

Stay in touch.

R

Adks NY and AZ