Need help with bone marrow biopsy results

[Coping1]

I am new to this and am hoping to find some answers. I have an autoimmune blood disorder for which I was given Cytoxan for a period of 2 years back in the 1990s and for 18 months in 2009-2010. My Hgb, WBC and PLT count began to decrease in 2010 so they switched me to Imuran.

They still did not come back up so my hematologist did a bone marrow biopsy which showed :

"clear dysplasia and dyspoiesis in the red cells and platelets. There is no increase in blasts. Cytogenetics and FISH are negative but the Genzyme pathologist also concurred with the obvious dysplasia morphologically. HLA typing ordered for further use as her MDS progresses."

I was recently sent to a BMT center for a consultation for a bone marrow transplant. They ordered another BMB because they had some question about the MDS diagnosis.


This one read:
"Hypocellular bone marrow (10%-20%) cellularity with trilineage hematopoiesis; mild erythroid atypia and ringed siderblasts." It goes on to say "These findings are not inconsistant with MDS including refractory anemia with ringed siderblasts, but by themselves are not diagnostic."

The Dr. at The BMT center said that everything points to MDS but there is not enough info to make that diagnosis and he wants me to come back for another biopsy in 6 months.
From what I have been reading, this is what MDS is. Can anyone help further explain the results of my biopsy and what all these terms mean?

Sorry this post is so long. It's a lot of info to take in.

~Coping

[CatherineJ]

Coping-

There are two parts to the bone marrow biopsy. The first part is the aspirate, where they take liquid from your bone to test for changes in your cells and DNA. The second part is the trephine, where they take a core sample of your marrow to test also. If the two tests match, that usually is pretty indicative of a diagnosis. The problem with hypoplastic marrow is that there aren't very many cells in the trephine sample and it can be hard to determine if it is MDS or AA sometimes. I would ask your doctor if the trephine and aspirate both showed dysplasia and if the trephine sample of the marrow was a good quality sample.

It's good that you don't have an increase in blasts, blasts are immature white blood cells that increase in people with leukemia.

Dysplasia and dyspoiesis means that your cells are abnormally shaped and aren't maturing properly. Trilineage hematpoiesis means that all three precursor blood cells (platelets, red and white cells) aren't functioning normally.

Negative cytogenetics and FISH test must mean that you don't have any genetic mutations, which is also a good thing.

Knowing what your blood counts are may help too.

Don't be afraid to ask your doctor what it means, I make my hematologist explain these terms to me so I can understand when I read my test results. Hope this helps a little for you.

Best of luck

[Coping1]

Catherine,

Thanks so much for your reply. Part of the problem was that my BMT doctor called me with the results (he is out of town) and I didn't have the report in front of me when I was talking to him. I asked them to send me the actual report which brought up more questions when I read it.

My local hematologist believes that I do have MDS and feels that I do need a BMT. I have an autoimmune blood disorder which is triggered by infections and I was hospitalized 5 times in 2010, 5 times in 2011 and twice this year with sepsis and various infections because of my low white count.

The BMT specialist is afraid that a transplant may be too risky if my blood disorder flares up during the process. He says he thinks that I probably do have secondary MDS from two rounds of cytoxan but that it could be AA or hypoplastic MDS and he wants to be sure before he decides on a treatment plan and right now wants to watch and wait and do another BMB in 6 months.

In the meantime every little infection I get turns into a big deal with potential hospitalization.

My last counts were:
HGB 10.4
WBC 1500
ANC 650
PLT 106,000

When I read about all the other treatments they seem to lower the wbc even more so I think this my be why my doctors don't feel these options would be a good alternative for me.

It's frustrating but from what I have been reading on this forum it looks like a lot of people are in a "watch and wait' mode.

Thanks again for your explanations. Something gets lost in the translation when you google some of these scientific terms

[CatherineJ]

It seems like your white count is the lowest and most severe cytopenia. Have you asked your doctor about white blood cell growth factors? I don't really know much about growth factors, I'm sure other members on the forum could help you with that. I would think your doc would want to raise your white count and neutrophils so you could avoid being hospitalized again.

It must be hard to have two doctors giving you conflicting opinions. Maybe you could seek another opinion from a different doctor?

Wait and watch mode is frustrating, but it does seem to be what hematologists recommend for many of us with bone marrow failure because it is most prudent when the treatments make you feel worse than you feel without them. It is true that many treatments initially make your counts worse too.

Googling for translations is certainly difficult! I have tried myself and have gotten very confused. I also happen to be lucky that one of my friends at Uni is a medical doctor and is researching cancer, so he reads everything to me and breaks it down to layman's language. I'm glad if I could help you translate.

Kind regards,

Catherine

[Coping1]

Catherine,
I do take Neupogen whenever my ANC gets below 550. When I get an infection all of my counts bottom out so I get RBC transfusions, and platelets along with daily neupogen.

I have just seen my BMT doctor one time so I think he is just now trying to get a handle on my situation-my 1st BMB was done locally last June, the second last month was done by him ay Vandy.

However, he point blank told my husband and me that a BMT could be disasterous if I had a flare of my blood disorder during the process-that my morbidity chances would be greatly increased. When talking about it with my local hematologist, she said that I can't keep getting septic, that these infections are going to kill me. We have been through a lot together over the last 28 years, so I feel like she has my best interests at heart.

I went to CLeveland Clinic last year for my blood disorder and we are now trying prophalactic antibiotics and monthly IVIG and plasmaphersis which has been helping somewhat, so I am hoping that if we could get the blood disorder under better control maybe that would give us a window of opportunity to treat whatever may be happening with my bone marrow.

Cleveland Clinic were the 1st ones to bring up to me the possibilty that I might have MDS, but my local hematologist said that she had been suspecting it for a while.

Do you mind telling me how you were diagnosed and how long it took to get a firm diagnosis?

~Thanks so much

[CatherineJ]

It took probably a year for my doctors to take me seriously. I was in and out of the doctor's office constantly, had several UTIs, an ear infection, bronchitis twice, and the flu with a fever of 103.3. My white count was low, but still in 'normal' range. Then over the summer my platelets dropped significantly from 220s to the 80s, but my doctor kept insisting it was just 'stress'.

I moved to London in September, had my blood checked by a GP here and they immediately sent me to a hematologist. I saw the hematologist the next week, they did a full viral screen, blood smear and a ton of other tests that all came back negative.

My first BMB showed hypoplastic marrow, less than 5% cellularity in the trephine and no evidence of dysplasia. The aspirate showed normal cellularity with dysplasia of all lineages. So they couldn't tell if I had AA or a hypoplastic-MDS at that point because the two tests conflicted with each other. I decided to wait a month and a half for the second BMB so I could do it under sedation because it hurt me quite a bit the first time around.

Two weeks after my second BMB, my hematologist said that both the trephine and the aspirate showed trilineage dysplasia keeping in line with MDS. The second sample was also hyperplastic instead of hypoplastic. Hematologist said it was normal for bone marrow to have patches of hyper-cellularity and patches of hypo-cellularity.

So basically from the point where my doctors noticed that my blood counts were low to the point of firm diagnosis was about 6 months. It was my own decision to wait another month and a half for second BMB though.

So you could find that in your next biopsy there may be more cells and it may be easier to obtain a more definitive diagnosis. Obviously your case is complicated by your blood disorder also.

When it comes down to it, I would ask if the specific diagnosis makes a difference with regards to your treatment and the decision to have an SCT. My hematologist explained to me that treatment for AA and MDS are basically the same as you can have either ATG or an SCT.

It sounds like your infections are really awful, I'm so sorry.

[Coping1]

Originally Posted by CatherineJ

When it comes down to it, I would ask if the specific diagnosis makes a difference with regards to your treatment and the decision to have an SCT. My hematologist explained to me that treatment for AA and MDS are basically the same as you can have either ATG or an SCT.

Catherine,
I think this is the biggest difference that my doctors have-my local hematologists doesn't feel that a specific diagnosis makes a difference in the long run, but the doctor at Vandy does.
I really do have confidence in both doctors, just in different ways......it's just that one has known me forever and gets the big picture, while the other is just getting to know me.
I think I just have to have patience, but as you know that is hard to do. I had a good heart to heart talk with my local hematologist a few days ago and she said we are just going to take things a few months at a time.
The hardest part is knowing that the bone marrow damage was caused by the cytoxan that was given to me for my other blood disorder and even if I have the BMT, it will do nothing to help my original blood disorder.
What a crazy cycle.......

Thanks for your input. It really does help to hear what others are going through.

~C