BMB intrepretation for my mother

[mawad]

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Hi, I am new to this site. I am so glad I found it. My mom currently resides overseas and was diagnosed in April 2009 with MDS. I went to visit back in May. I have her report and it reads as follows:

"Moderately hypercellular bone marrow (85%) with decreased M?E ratio due to increased erythroid series showing mild megaloblatoid changes.

The myeloid series shows left shift

Megakaryoytes show focal dysplastic features

Plasma cells and eosinophils are unremarkable

Focal fibrosis is seen

The morphology is consistent with MDS. Iron stain and clinical correlation are recommended".

Any idea what all of that means. The report does not show what percent of blast.

Please respond if you have any info.

Thank you so much

Mona

[Hopeful]

Mona,

I'm sorry to hear about your mom's diagnosis.

I am not in the medical field, but have learned from experience. Here is my interpretation. I hope it helps...

<Moderately hypercellular bone marrow (85%)>
Her marrow is making an excessive amount of cells that are most likely not functioning like normal.

<decreased M?E ratio>
This is the ratio of myeloid cells to erythroid cells. The myeloid cells are the high level precursors to all the blood cells (RBCs, WBCs, and platelets). The erythroid cells are the precursors to RBCs. This ratio should be around 2:1.

<due to increased erythroid series showing mild megaloblatoid changes.>
There are lots of RBC precursors, some are misshaped.

<The myeloid series shows left shift>
There are more immature bone marrow cells seen than fully mature ones.

<Megakaryoytes show focal dysplastic features>
There are misshaped platelet precursors.

<Plasma cells and eosinophils are unremarkable>
No problems seen with these cells.

<Focal fibrosis is seen>
Some scarring is seen in the marrow. If they did a reticulin stain it will indicate the level of fibrosis.

<The morphology is consistent with MDS. Iron stain and clinical correlation are recommended".>
It is true. All these things can be seen with MDS, especially in a hypercellular marrow.

Did they also do a peripheral blood smear? It is probably a good thing if blasts are not mentioned in the BMB.

I'd recommend checking out the AA&MDS International Foundation's website. Recently I saw that the MDS conference from Cleveland Ohio was downloaded there. There are some excellent presentations on MDS basics as well as treatment options:

http://live.blueskybroadcast.com/bsb...=1418&CAT=1419

I wish you both the best!

[mawad]

Hopeful,

Thank you so much for your reply and for taking the time to explain all that to me. It was very helpful.

My mom is 79 years old. Although she was officially diagnosed with MDS in April of this year, she has had the symptoms of MDS since earlier last year. she had episodes of bleeding from her nose. She was anemic (hg, 6)and required some ten transfusions. Earlier this year, the doctor put her on epoetin shots to stimulate her BM to produce red blood cells. She started with three shots a week, down to two a week and then one a week. Now she takes one shot every two weeks. Thankfully she is responding very well to the treatment. Her Hg is now 12. Her platelets counts, however, is low. She is doing really good and planning on coming to visit me her in California at the end of September. Her Dr. said she is good to travel.

I signed up myself to attend the Patient and family one day conference in September and I have been in contact with the AA&MDSIF. I live in the Los Angeles area.

I wish you too the best. Young people live forever with MDS and with the new drugs they are making these days, there is so much hope in coming up with cure of this disease.

I am hopeful too

Take care,

Mona

[Neil Cuadra]

Those interested in the one-day conference at UCLA on September 26 can see this news thread for details:

Free One-Day MDS Conference in Los Angeles, September 2009

My wife and I look forward to meeting you at the conference, Mona.

[mawad]

Thank you Neil, I too look forward to seeing you and your wife at the conference in Sep as well.

Mona

[Dick S]

And for you southeasterners, we have a one-day MDS conference at Moffitt in Tampa on October 10th.

[mawad]

My mom was admitted to the hospital yesterday, She had fluid retension in one of her knees and blood accumulation in her other knee. Very severe swelling I was told, felt like both knees were about to explode. They drew the fluids and the blood out and gave her Platelet transfusion and other med to relief the severe pain she had.

My mom is 79 yo and was diangnosed with MDS in April 2009 but has had the MDS early last year.

Her hg is 12. She is on EPO and responding fine.

Do you think the low platelet count has caused the swelling in her knee and the internal bleeding in her other knee. Do you think the kidney has anything to do with that?

If you have had similar situation or heard of someone who had that, could you please let me know. I am so worried. My mom lives overseas and I am here in LA and not sure what is going on. Is this a complication of MDS. What would the outcome be? Please response.

Thank you,

Mona

[Birgitta-A]

Hi Mona,
During the last three years I have had bleedings in different joint 3 times all depending on to much stress on the joints and low, bad functioning platelets.


The first time I had been working at my summerhouse and moving round the house on my knees on small stones. The severe pain disappeared after a few days. Then I was building a rabbit cage for my grand children and the hammering caused a bleeding in the joint of my right hand. I couldn't move the hand for several days and had to get help to get dressed and so on. Then I almost fell in a staircase and hurt my rigtht foot - it took several days again till I could walk. Now I dare not do anything that possibly could cause bleeding in my joints.
Birgitta-A
70 yo last platelet count 41

[mawad]

Hi Birgitta-A

Thank you so much for your response. It gives me the peace of mind to know that mom will get better and the pain will go away. She is doing a little better today and will be charged from the hospital tomorrw. They gave her platelet transfusion at the hospital too. She may also have an infection in her knee. They were looking at this possibility today but I haven't had the chane to ask her yet.

Are you yourself on any medication to control your MDS? if so, what kind? and how long have you had the MDS for? You seem to be doing really well. I wish you all the best.

Always take care,

Mona

[Birgitta-A]

Hi Mona,
I was dx May 2006 and have been asymptomatic except these joint bleedings and neutropenic fever Sept 2007. You know I try to do everything that can make me better and avoid everything that can make me more ill.

This means that I don't eat red meat since that will increase iron (I have now received 98 units of blood), drink milk, tea (not green tea), whole grain products that can decrease iron absoption.

I avoid everything on the warning list for patients with platelets disorders for examle most pain killers, a lot of food like onion, garlic, chocolate, many fruits...

Then I am afraid of infected people and infected food so I travel in my own car, meet my friends outdoors if possible otherwise in big restaurants or similar places, take care of my grand childern outdoors, only eat recently cooked food or fruits that I have peeled myself.

Neil asked me to write my personal profile so you can read about my treatment. I have only accepted supportive treatment so far.

Hope your mother continues to improve !
Kind regards
Birgitta-A

[Neil Cuadra]

Here's the link to Birgitta's personal profile.

[mawad]

Thank you Birgitta and Neil for the information. I will keep Brigitta in my thoughts and I hope you will always stay healthy and well like you are right now. Since I learned about my mom diagnosis back in April of this year, I have been searching and learning all I can learn about MDS, however, talking to people who have been through the same experience and learn from them tips on the subject is more improtant than any scientific article. I am so glad I found this web site. I feel like I have a family and friends that I can relate to and understand the journey we are all going through.

Thank you again. Please keep in touch. I wish you all the best.

P.s.. I read Birgitta's profile. Thank you for sharing your experience.

Take care, Mona

[mawad]

My 79 yo mom developed deep venous thrombosis in her leg. Is it possible that the Epo injections is responsible for this?. She takes one shot every two weeks now and her Dr. said no, but I was reading an article on how if the Epo rises above acceptible level, the leg swelling and the all the symptoms associated will start showing. My mom's platelet went down darstically and was transfued with platelets while she was in the hospital to treat her leg.

Any opinion on this? has anyone had or heared of this situation? The causes, the symptoms and the treatment.

Thank you,

Mona

[Birgitta-A]

Hi Mona,
Yes, EPO like Aranesp can give thrombosis - it is important to not try to increase the HGB too much.
http://www.rxlist.com/aranesp-drug.htm

As far as I understand your mother's low platelets should prevent thrombosis but the effect of platelet count on risk for thrombosis is very complicated.
Kind regards
Birgitta-A

[mawad]

Hi Birgitta,

I really appreciate your response. I sent the article to my mom's dr. Her HG was increasing alot more that the recommended increase.

I wonder if this current condition will come back if he adjusted her dosage of Epoe. She is planning on coming to the states to visit me here in California and I am wondering if she will be able to fly and if it is safe for her.

Best regards,

Mona

[Birgitta-A]

Hi Mona,
When we have had a thrombosis the risk for relaps is increased because the walls of the blood vessels are damaged. Hopefully your mother will be able to continue EPO treatment.

Everything that can increase the risk for thrombosis like flying can be dangerous. There are many ways that you can try to avoid thrombosis during flying like having special stockings, moving, drinking fluids and so on:
http://airplanes.suite101.com/articl...sis_on_flights
Kind regards
Birgitta-A

[JEZ]

Originally Posted by Birgitta-A

Hi Mona,
When we have had a thrombosis the risk for relaps is increased because the walls of the blood vessels are damaged. Hopefully your mother will be able to continue EPO treatment.

Everything that can increase the risk for thrombosis like flying can be dangerous. There are many ways that you can try to avoid thrombosis during flying like having special stockings, moving, drinking fluids and so on:
http://airplanes.suite101.com/articl...sis_on_flights
Kind regards
Birgitta-A

Those airline compression stockings are the best for swelling of the legs while on Csa... I tried everything and they were the only stockings that worked. They are inexpensive as well.

JEZ

[mawad]

Thank You Birgitta and JEZ for all the information. This is very helpful and I will provide all of these tips to my mom once ready to travel.

Take care,

Mona