advice/anwsers?

[robanddaphne]

Hi everyone,
I have lurked here for a week or so trying to learn and gather information about what my wife and I are up against,
a couple months ago my wife, Daphne, started having pains from her spleen. I think many of you know where this is going so in short. she has been to the hospital twice, once for the pain (a few days) then a week later for Pneumonia (12 days) we have missed two appts with the transplant team at U of M ann arbor because of the hosp. stays. she has seen a hematologist and he has said probable myelofibrosis, but not diagnosed, but still referred her to the transplant team without starting any treatment. her transplant (i assume a consult) is next week. in the mean time her CBC is dropping and her PCP wants to do a transfusion soon.
some of the CBC numbers have me concerned but I really don't know what is bad/not so bad, she has also had one BMB which some of the comments said- increased reticulin fibrosis, hypercellular marrow est. at 70%, no increase in blasts. can anyone tell me what this means? i.e. this is the beginning stages etc.?
her CBC earlier this week=
WBC 2.7, HGLO (sorry don't know the abbreviations) 6.8 HCRT 21.7, PLATE 26, RBC 2.96, MCV 73.3
I know this is all relative to a lot of other things but, the doctors don't seem real concerned? but from what I've read these numbers should be ringing some bells.
I would like to know what some of you that have been through this think?
also has anyone here been treated at U of M?

Thanks,
Rob

[DanL]

Rob,

Welcome to the forum. I am sorry that your wife is having issues with her bone marrow. The first few months are pretty scary as you try to get as much information as possible, but you become more comfortable with the numbers and the changes in life that take place.

To answer your immediate questions:
As you probably know, your wife's numbers are all low.
This would be called pancytopenia - meaning it affects all blood lines.

If you look around the forum, it appears to be common to transfuse patients when their HGB gets below 8.0 as this is where people seem to become really weak and have difficulty doing the basics in life. As for platelets, this is really a big variable. Until the last 2 months, i have been living with platelets in the 20-26k range for about 2 years. For some reason they have popped up over the past 2 months to 35k. Still way below normal, but perfectly livable for me provided that I am careful. Your wife's WBC number is also low, but there is another component within that number that is important which is the neutrophil count. Neutrophils help identify and fight infection.

As for the marrow fibrosis, there are several grades of fibrosis. In primary myelofibrosis (PMF), the degree of fibrosis is separated by whether the fibrosis is reticulin or collagen, with collagen being more severe, and within each type there is a grading system for a total of I think 6 categories.

I know that you said you are in Michigan and U of M is a fine center. If you have a chance for a consult at the Mayo Clinic in Rochester, MN, it may be worth your time. They are pretty well respected in the PMF field and have been at the forefront of research and treatment.

I wish you and your wife the best.

[Birgitta-A]

Hi Rob,
As Dan wrote your wife probably has Myelofibrosis. I had that dx during one year and still belong to four support groups for MF patients. Here is a link to one of them: http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?A0=MPN-NET

MF is rather different from MDS - you will get better info from members in MPN-NET about spleen problems, drugs and Stem Cell Transplantation.

Hypercellular marrow means too many cells in the bone marrow compared with healthy persons at the same age.

Blast cells are immature cells - in the bone marrow should they not be more than 5%. Increased blast cells indicate a more serious disease. Good that your wife doesn't have that.

Kind regards
Birgitta-A
73 yo. Preliminary dx 2006 MDS. After the first BMB the dx was changed to MF with very severe fibrosis. After neutropenic fever 2007 the dx was changed back to MDS. Supportive therapy with txs, drugs for iron overload and Neupogen for low white blood cells until 2010. Since then positive results with Thalidomide + Prednisone