Newly diagnosed with MDS

[Sandra L]

I am writing for my brother in law who was just diagnosed with MDS. He doesn't understand the doctor's explanation - it was over the phone - and he had no idea what doc was talking about, didn't understand any of the terms, etc. So I have been reading, studying, googling, etc.

His WBC is 2.4/low (Lymphocytes 47.0/high, Monos 4.0/low, Neutrophils 44.8/low, Granulocytes 1.3 /low

RBC is 3.05/low (HGB 11.0/low, Hematocrit 32.6/low, MCV 108.0/high, MCH 37.2/high, MCHC ok, RDW 15.9/at high point)

Platelets 58/low

Blasts 7%

The bone marrow diagnosis is difficult to understand

Trilineage dysplasia with increased blasts, best characterized as refractory anemia with increased blasts -which means cells are abnormal in size/shape and immature?

Dyserythropoiesis with megaloblastoid changes ?

Neutropenia with hypogranular neutrophils -low white cells?

Myeloid left shift with increased blasts (7% by flow) -immature?

Megakaryocytic hypoplasia tih dysmegakaryopoiesis -low platelets?

Absence of iron stores ?


I read what an IPPS score is but I can't find this on any of his reports. Can anyone guess at what this score might be from the above? He won't call the first doc and ask these questions. Am trying to inform him, he has an appointment with Cleveland Clinic on the 17 for a second opinion, but he would like to know where he stands as far as being low or high risk.

He has not had chemo, nor been exposed to chemicals, but I would say he is an alchoholic and did smoke, he is 74. Can't think of anything else to ask. Would appreciate any info on where he stands as far a risk factor.

Thank you, Sandy

[bebop]

are you his caregiver? one thing I would do is have him give the drs and I mean all of them permission for you to talk to them and for them to be able to give you info. does anyone go with him to the dr? has he needed any type of transfusions?

[freedom99]

The following is a web site with a good explanation:
http://www.cancer.gov/cancertopics/p...lastic/Patient

There is a GREG-H on one of the forums who has some good info on a web site he has I will see if I can find it.

There is also a prognosis or approximate life expectance depending upon the type of MDS he has and a number of other factors. I will see if I can find that.

Ask your doctor for a printout of the details of the type of MDS he has and the prognosis. Ask the doctor to high light his specific conditions.

[freedom99]

The following is a pdf file for IPPS score.
http://www.fmshk.org/database/articles/03mb2_17.pdf

Table 3 gives median survival.

You first of all have to go through the various MDS types to find out which yours falls under to find a score number and then apply it to the age. This site has those different parameters.

Your doctor should be able to give your what Type of MDS is involved and give your the score.

[freedom99]

Greg H has a good web site that explains MDS. It's at the following location:

www.greghankins.com

[freedom99]

You definitely have to go with your brother in law and get his permision to talk to the doctor. This is something that cannot be done over the phone.

Get all the details from the doctor and if you don't get them all make another appointment, write down the questions and get the rest then.

[freedom99]

Hello Sandar L
The following site talks again about MDS and this one has has a some good IPSS charts, especially the bottom two.
You do need some data to plug into these charts.
As you go through the forums here you will see that life expectancy is often a gray area and can be simply a shot in the dark.
Many people in these forums have beat the odds by many years.
Also the IPSS scores always submit life expectancies as means. This means 50% above and 50% below the projected figure.

[freedom99]

Hello Sandra L

Sorry I forgot the site address. Here it is:

http://www.mdanderson.org/patient-an...ome/index.html

[freedom99]

Hi Elaine L
Here are some average guidelines for blood counts.
Don't panic if some counts are out of wack. Talk to your doctor first.

As a general average guideline:-
WBC - white blood cell count.
Adult Range:
SI units.
4.0 - 11.0 x 10*9 cells/L.
US units.
4,000 and 11,000 cells/ cu.mm (cubic millimetres) or /µl (per microlitre of blood)

WBC Differential.
Lymphocyte
Adult Range: 18 - 40%
Absolute value or Absolute lymphocyte counts (ALC):
720- 4400/µl or 0.72 - 4.4 x 10*9/L.
Children's Range: 25 - 50%
Absolute value or Absolute lymphocyte counts (ALC):
1000 - 5500/µl or 1.0 - 5.5 x 10*9/L.

Monocytes
Adult Range: 3 to 8%
Absolute value or Absolute monocyte count:
120 - 880/µl or 0.1 - 0.8 x 10*9/L.

Neutrophils
Adult Range: 50 - 73%
Absolute value or Absolute neutrophil counts (ANC):
2,000 - 8,030/µl or 2.0 - 8.0 x 10*9/L.
Children's Range: 30 - 60%
Absolute value or Absolute neutrophil counts (ANC):
1200- 6600/µl or 1.2 - 6.6 x 10*9/L

Eosinophils
Adult Range: 2 - 4%
Absolute value:
80 - 440/µl or 0.08 - 0.4 x 10*9/L.

Basophils
Adult Range: 0.5 - 1%
Absolute value:
20 - 110/µl or 0.02 - 0.1 x 10*9/L.

RBC - red blood cell count
(varies with altitude):
Male: 4.7 to 6.1 million cells/µl (per microlitre of blood)
Female: 4.2 to 5.4 million cells/µl
Children: 4.6 - 4.8 million cells/µl

Red cell distribution width (RDW)
11-15%

Haemoglobin
(varies with altitude):
Male - 8.1 to 11.2 mmol/L (13 to 18 gm/dL)
Female - 7.4 to 9.9 mmol/L (12 to 16 gm/dL)
Child - 7.1 to 8.4 mmol/L (11.5 to 13.5 gm/dL)
Newborns - 10.5 to 13.7 mmol/L (17 to 22 gm/dl)

Haematocrit
(varies with altitude):
Newborn Range - 0.5 to 0.62 (50-62%)
Child - 0.33 to 0.40 (33-40%)
Adult male - 0.39 to 0.51 (39-51%)
Adult female 0.34 to 0.46 (34-46%)

Mean Corpuscular Volume (MCV)
Values are higher in newborns and infants.
Adult men 80-98 fl (femtoliters)
Adult Women: 96-108 fl

Mean Corpuscular Haemoglobin (MCH)
27.5 - 33.5 pg/cell (picograms per cell)

Mean corpuscular haemoglobin concentration (MCHC)
32 to 36 gm/dL
(this is sometimes reported in % i.e. 32-36%)

The platelet count
The normal range can be expressed in a number of ways, but they all mean the same.
150,000 - 350,000/µl ( platelets per microlitre)
150,000 - 350,000/ mm3 (platelets per cubic millimetre)
150 - 350 x 10*9/liter.

Mean Platelet Volume (MPV)
7.5-11.5 fl

[freedom99]

Hi Elaine L
Your counts ------- Guidelines (Adult Male) follow dashed lines

WBC 2.4--------- 4.0 - 11.0 x 10*9 cells/L

Lymphocytes 47.0 ------ 18 – 40% Absolute value or Absolute
lymphocyte counts (ALC):
720- 4400/µl or 0.72 - 4.4 x 10*9/L

Monos 4.0----------- 3 to 8% Absolute value or Absolute
monocyte count:
120 - 880/µl or 0.1 - 0.8 x 10*9/L.

Neutrophils 44.8------- 50 - 73% Absolute value or Absolute neutrophil
counts (ANC):
2,000 - 8,030/µl or 2.0 - 8.0 x 10*9/L.

Granulocytes 1.3 ------

RBC is 3.05------------ 4.7 to 6.1 million cells/µl (per microlitre of blood)


HGB 11.0 ------------ 8.1 to 11.2 mmol/L (13 to 18 gm/dL)


Hematocrit 32.6 ----------- 0.39 to 0.51 (39-51%)


MCV 108.0--------------- 80-98 fl (femtoliters)


MCH 37.2 --------------- 27.5 - 33.5 pg/cell (picograms per cell)


MCHC ok, -------------- 32 to 36 gm/dL (this is sometimes reported in %
i.e. 32-36%)


RDW 15.9-------------- 11-15%


Platelets 58------------- 150,000 - 350,000/µl ( platelets per microlitre)
150,000 - 350,000/ mm3 (platelets per cubic
millimetre)
150 - 350 x 10*9/liter. (They all mean the same)

[Greg H]

Hey Sandy!

All the folks who encouraged you to get your brother's written permission to talk to his doc are right on.

I can help with some of the question you ask, but not all.

The IPSS Score is important, in that it often determines what sort of treatment a hematologist will want to recommend for your brother. The score is made up of three components:

1. Blasts (what percentage of immature white cells are clogging up the marrow)
2. Cytopenias (i.e., how low are his blood counts)
3. Cytogenetics (whither his bone marrow stem cells have any abnormal chromosomes, and, if so, which ones).

So, based on the results you shared, we have 1 & 2, but not 3. The cytogenetics part of the bone marrow biopsy report often takes longer to come back from the lab that the other parts of the report. (Maybe a week or two). But, if its been long enough, you should be able to get his doctor's nurse to fax you a copy. Once you get it, you can let us know what it says, and we'll help you figure out what all that means.

You should download this booklet (PDF) from the Leukemia and Lymphoma Society (though I do wish they'd get a new cover model; the lady that's on there is highly annoying). I think its the best of all the introductory booklets on MDS. Page 10 and 11 have the IPSS stuff.

Based on the standard IPSS system, your brother gets half a point for having a blast percentage between 5% and 10%. He gets another half point because his ANC is below 1500 and his platelets are below 100,000. (The ANC is the 44.8% you reported multiplied by the WBC count (2.4 x .448 = 1.075 or 1,075 ANC. Some labs use 1.5 (meaning thousands); some use 1500.)

So, he has a score of 1, which is Intermediate-1 MDS. But we don't know yet about his cytogenetics, and that could add to the score. Some chromosomal abnormalities -- like deletion 5q -- are actually considered a "good" thing, because there are specific treatment liked to those.

Generally a Low or INT-1 IPSS score is classified as "low risk" while a INT-2 or High are considered High Risk.

Is he having any bleeding or bruising issues? Some people do with low platelets, but that's highly variable from individual to individual.

Going to Cleveland Clinic is a brilliant idea. They are top-notch for MDS. And it's much better to get the second opinion from an MDS specialist before starting treatment.

Take Care!

Greg

[Greg H]

Sandy,

Let me try to help with some other stuff about your brother's bone marrow report.

The bone marrow diagnosis is difficult to understand

No kidding! this is because it's a written in medical jargon.

Trilineage dysplasia with increased blasts, best characterized as refractory anemia with increased blasts -which means cells are abnormal in size/shape and immature?

You are right. "Dysplasia" means "messed up." "Tri-lineage" means in both the red cell line and white cell line, as well as the platelet line. So all three blood cell production lines are messed up. Plus he's got a bunch of blasts (immature white cells) hanging out in the bone marrow. Up to about five percent is considered normal, so he's not on the verge of converting to leukemia yet.

Dyserythropoiesis with megaloblastoid changes ?

Erythropoiesis is the red cell production mechanism. That's "dys" or "messed up." I wouldn't know a megaloblast if it kissed me, so I can't help there. But this is essentially a description of how the red cells production line is messed up.

Neutropenia with hypogranular neutrophils -low white cells?
Right again. There aren't enough mature neutrophils, but there are some messed up ones.

Myeloid left shift with increased blasts (7% by flow) -immature?
Yep. The "Myeloid" produciton line, which is the white cell production line, has too many immature white cells.

Megakaryocytic hypoplasia tih dysmegakaryopoiesis -low platelets?
Right again! The Platelet production line is not working right. I think "hypoplasia" means that there aren't enough megakaryocytes, which are the great big cells that platelets break off of.

Absence of iron stores

This suggests that there's not enough iron in the bone marrow to do a good job of producing blood, and there could be a variety of causes for that, including B12 and Folic Acid deficiencies.

If your brother hasn't been checked for those, they'll probably do that at the Cleveland clinic. They should check his copper and zinc, too.

You did a great job figuring out all that jargon. Pretty soon you'll be in demand around here to help people figure out their lab reports. Your brother is lucky to have you on his team.

There is a link between cigarette smoking and MDS, maybe because of the benzene in tobacco smoke. I have read of a link with alcohol abuse, but I have never found an actual scientific paper on that. My doc told me to quit drinking. I did, and lost 30 pounds, which was a good thing!

Let me and the other folks know if we can provide any additional help. There's a lot of experience amongst the denizens of marrowforums.

Take care!

Greg

[Sandra L]

Can't thank you enough. Contacting people like yourselves was the first thing I thought about when I heard about Cliff's diagnosis. My sister, Sue, is his caregiver and wife. But both of them don't seem to know how to advocate for themselves, so in hops pushy sister.

I experienced how helpful these forums are several years ago when I needed help. I would never have made it thru the ordeal without the help of unselfish people like yourselves.

The three of us attended a conference Saturday sponsored by the Aplastic Anemia & MDS International Foundation. Doctors David Steensma, Dana-Farbor Cancer Institute, and Mikkael Sekeres, Cleveland Clinic, did a fantastic job and were so "normal" you thought they were a friend. They answered questions, talked to people individually. We learned alot from other patients and their caregivers, most of whom we're not new to this disease - many in remission which was good for Cliff to see and hear.

I will be going with Cliff and Sue this Friday for an appointment with a CC doctor (can't remember name) who is involved in clinical trials. ( my notebook is ready to go!) We are pleased that CC has played a large part in the research of this disease and feel that Cliff will receive excellent care.

Forgot a few things, Cliff has not experience side effects other than extreme tiredness, no transfusions. And Greg, you are right on top of the 3 things needed to determine type of MDS and treatment. He hasn't been tested for step 3, chromosome defects. With the first two test, I came up with Intermediate 1, so glad I'm on the right track.

Again thank you all. I will keep in touch and hopefully will convince my sister to join in. Sandy (Sandra L)

[BerryP]

I have hypoplastic myelodysplasia (hypo mds) and I was told that hypoplasia meant low or none of the plasia needed to make blood cells. Don't know if that's any help but wish you well.

[cheri]

Hi Sandy...
Where else would complete strangers go to such lengths to help you to understand the seemingly impossible disease of MDS...(and a diagnosis explanation over the phone? hmmmm....)

Greg H, you are an inspiration...I learn from you every time I visit this forum!
Freedom, your info is excellent and easy to interpret...
....and just wait until Neil chimes in!

Sandy, you have discovered a hugely important facet of treatment for your brother in law....support from knowledgeable people who do NOT have a monetary agenda! This forum is amazing!

If you are able, set your brother up with a notebook of blank calendar pages and start keeping copious notes....doctor visits, cbc #'s, treatments, supporting meds, medical tests, etc....as time goes on, the information is important and the memory gets fuzzy!
Hopefully, your B-I-L will feel comfortable enough to enter this wonderful website!
Best, Cheri

[dougr]

Greg....thank you, thank you, thank you, for the great post and making complex medical terms understandable for the club that no one wants to join. Now I need to find a Chart to download which will organize my Fish/BMB/CBC information. Doug