Blasts

[kjanikian]

Hello,
My mother was dx w/ MDS about a year ago but was stable up until this past May, I'm still a novice at figuring this complex disease out so I have what is probably a relatively easy question. Her last BMB was a little over a year ago and showed that cells were suggestive of MDS but not conclusive and no blasts. She has not had another BMB but her hematolgist does not see the need to do another one, though she has become basically transfusion dependent the past few months and her platelets are now droping (they were 53 last week). He said she has no blasts in her blood but my question is that isn't it more precise to see if blasts are in the bone marrow not the blood? When pts put up their blasts count on this site are they from the BMB or blood test? How often do people get BMB on avg. She really doesn't mind them at all (she is one tough woman :0) Although they don't get great samples and the 2 times they did it last year they weren't able to aspirate anything. Does anyone get BMB fron their sternum or both hips? I guess I have more questions then I thought, sorry! :-)
My mom is 63yo, MDS-Intermediate (healthy in every other way)
Thanks for any help in this!
Lastly, does anyone have recommendations for MDS specialist. We are currently at the Clev Clinic which is great but would like to get another opinion. Will fly anywhere, just want my mom to be ok!!!!!!
Kristen

[Zoe's Life]

Kristen,

I had to laugh at your edit note...you forgot your name? I am afraid of doing that one day, I can barely recall anyone elses sometimes, my brain is becoming swiss cheese as I age. Although you likely meant you just forgot to put your name at the bottom, made me laugh anyway.

The Cleveland Clinic is a Center of Excellence for MDS treatment. Your mom is in good hands. If it would help you feel better, and she is willing, a second opinion is never a bad idea. Honestly though, they are cutting edge from what I understand.

They do look for blasts in the marrow, although they can be found in the blood also (not a good thing).

Does she have some fibrosis? That can cause problems with getting an aspirate. My first biopsy was done by someone who didn't do them often, and I was crazy nervous, and they made me go in alone, so I didn't deal with it well. My second was done at The James in Columbus, Ohio. It was so much easier. The CNP did them all the time, they gave me an ativan, I knew what to expect and they let my friend stay in the room with me. The first one he did not get an aspirate, but the second was fine. All that to say, I think stress and the competence of the person doing the biopsy makes a huge difference also. I would expect, however, that the folks at The Cleveland Clinic do them all the time. So there is likely some physical cause for the difficulty. Can you ask the doctor?

Do you go to your mom's appointments with her? Can you ask him or her a lot of questions?

I have only had two biopsies. The second one was a week after the first since I went to The James for a second opinion. Although I have been pretty stable.

Zoe

[kjanikian]

Zoe,
I'm new to this forum thing as you can see by me "forgetting my name" :-)

Thanks for giving me feedback. I know we are good hands at the Cleveland Clinic but just think that a second set of outside eyes is never a bad idea when it comes to such a serious thing.

My mom actually had 2 BMB done last year at the time of her dx, one was done at the Cleveland Clinic and the other was at University in Cleveland. I think they knew what they were doing but yes she did have fibrosis.

She had Hodgkin's Lymphoma about 25 years ago so we think that the MDS may be d/t the chemo that she had at that time.

She started on Aranesp a couple of months ago but just stopped it d/t her EPO was 470? I don't understand why they stopped it.

I am a Nurse Practitioner myself and have gone to as many appts as I can w/ her but it's just hard since I'm 2 hours away from Cleveland and have a family of my own. (I live in Columbus)

Thanks for your help,
Kristen

[Birgitta-A]

Hi Kristen,
As Zoe told you they look for blasts in the bone marrow (hopefully they are less than 5 %) and in the blood (hopefully about 0,01 %). It is the % in the bone marrow they use for staging.

As Zoe wrote it is not always possible to aspirate when you have severe fibrosis (they have never been able to aspirate from my bone marrow due to fibrosis - this makes BMP almost painless since it is the aspiration that hurts).

BMP in the sternum is not so common - many years ago all BMP:s were done in the sternum but the patients have less complications when the BMP is done in the christa in the back.

I got two BMP at dx and then a third one 3 years after dx - I have been transfusion dependent since dx.

If the EPO is more than 500 at dx Aranesp has hardly ever any effect. Aranesp gives the best results in patients with EPO less than 200. Aranesp is EPO and if your own kidneys make EPO it is no use to give more (my EPO was more than 800 at dx and I never got Aranesp).

Do take care of your mother's platelets - there is a warning list at the PDAS forum:
http://www.pdsa.org/itp-information/itp-warnings.html

There are many drugs that decrease the platelets (look out for pain killers) and then many kinds of food can increase bleeding like garlic, onion, chocolate, blueberries and so on. My platelet count was 65 at dx and is now 40-50 with some small bleedings (petechia) around the eyes as only symptom.

You know low age (less than 65) and no other diseases give your mother a better prognosis .

Kind regards
Birgitta-A

[Beth I]

Hi, Kristen.

I have actually had 5 BMBs since May of 2007, when my hem/onc first suspected there was something going on. I was first seen at Dana Farber, and got second opinions at St. Vincent's and Memorial Sloan-Kettering AND had my data sent to Dr. List at Moffitt (who I would go to if it weren't so far for me). I wasn't going down without a fight! All of my BMBs have been done at DF, though. So, on average, it's every 8 months or so that they take a look. I have developed fibrosis as well, which makes it very very difficult to get the aspirate - in fact, the last two were multiple dry taps. My doc actually gets up on the table to put his weight behind the instrument. I wish I were kidding. I have insisted on and now get conscious sedation for the procedure.

From what I've been told, peripheral blood blast counts are not nearly accurate enough, unless of course there are abvious amounts.

So, I don't think a second opinion is a bad thing at all. You and your mom may not learn anything that you didn't already know, but at least you'll know that you are doing all you can. In my humble opinion.

Best of luck!

Beth

[kjanikian]

Beth,
Thanks for the response. What exactly do you mean by having your data sent to Dr List at Moffitt? I assume you sent all of your records to him but did you have a consult over the phone w/ him then? Is he recognized as being one of the best for Myelodysplasia? Did he change your treatment at all?
Sorry for all of the questions but I REALLY appreciate any insight you may have. It sounds like you are a real fighter and that is great.
Do you know if they weren't able to aspirate anything if the BMB was really any good or of limited value? I don't blame you for wanting to be out for all future BMB they don't sound like fun at all!
I wish you the best and keep fighting :-)
Kristen

[Beth I]

Hi, Kristen.

The thing with Dr. List was pretty convoluted. I have a friend who works with companies that develop drugs, and she met with a guy (Greg Berk) in California whose company is developing something with a relation to MDS. Sorry, I don't recall the details of the drug. In any event, she told him about my situation and since he knows List, he volunteered to see if List would do a phone consult. I never saw List, but he didn't add anything to what I already knew about my situation, either, which at the time was "we don't know." He is very well known in MDS treatment circles.

As for the BMB and fibrosis, in my own situation, the inability to get the aspirate does mean that the findings from the BMB are of little use. Particularly because of my questionable monosomy 7. Only the aspirate makes for a good sample from which to do the FISH testing that shows what is happening with the chromosomes. They have tried with the bone sample and even with peripheral blood, but the results have been unclear.

I go back in two months for another BMB and hope hope hope it is worth all of the pain and time and energy. I hope the same for your mom, as well.

Best,

Beth