HELP! My Mom has MDS

[Josie]

Hi Neil, and everyone,
I read where it said that exersize is good in moderation, a low carb diet and plenty of rest. I told Mom to rest, now I can tell her exersize is ok. That will make her fill better. She has good iron level when she got her shot of procrite. I guess I will have to waite 2 more weeks before we know if there is any changes. I be back here tonight thanks to everyone

[Neil]

Hi Josie,
Make sure her doc agrees with the exercise.
At 82 exercise may not be adviseable.

[Josie]

Neil
She has been working all her life. She use to walk my dog every day, and reguarly lifts 5lb weights. When she started feeling week she stoped walking but lifted her weights when she watched tv.
Today I saw color in her face before I went to work, and she felt good enough to cook. For the first time in about a month she looked good and happy. she has been cooking but I could tell she forced herself. I told her what ever she does make sure she rests when she gets winded, and be sure not to over do it.
Where can I find out what I am to look for in the bone marrow report, and what it means? Thanks

[sarah]

Josie, what a blessing to see her looking good and happy. Its so very hard watching our loved ones go through so very much. We appreciate those good days.
Take care,
Sarah

[Neil]

Hi Josie,
The BMB report will have all of the info in it, but the language can be difficult till you learn the terms. It will explain the Peripheral Blood. It will comment on the Erythrocytes ( red cells), Total Leukocytes (white cells) and Platelets.
It will then go on to the Bone Marrow Aspirate and comment on the state of the marrow. Then iron stains. About this point there will be a Diagnosis. You should see information on her classification and if she has hypo or hyperplastic marrow etc.
The cytogenetics report is usually on another page and will tell if there are any abnormal chromosomes.
The sequence may be a bit different from lab to lab but all the info should be there.
At this point would focus on the Diagnosis comments and the Surgical Pathology Report.
Be sure to ask the doc to explain the report and to clarify anything you do not understand.
Most of the time questions will come up after you leave the docs office. You can always call back or you can ask on The Forum. Its possible one of the members will have an answer.
Her exercise routine sounds great. As long as she has been doing all you describe, I would encourage her to continue, but with caution and with her docs approval. If she stops altogether, it would be difficult to start up again.

[Josie]

Hi Neil,

How are you doing? I have been very busy at work with the valientines day stuff. I worked 11 days in a row. Today is finally friday for me.
I have told my mom about you and all your help. she wants me to Thank You.
She says she dose not care what a report says she knows her body best and MDS is not what she has. She was just depleated from the flu she had. she is determined that all her counts will be up when she test. Strong will she is.

About the bmb report it says a peripheral blood smear was not submitted, and a cytogenetics is needed for differential diagnosis. The Paraffin section immunohistochemical studies, results are negative. “the stains show no increase in blast, lymhoid cells or plasma cells. No evidence of metastatic carcinoma is noted.

What do you think about that?

When we went for her 4th and final shot today (so she says) I had the nurse give me the part of the blood report that was missing.

The nurse that gives her the shot didn’t know that there are sub catagories for MDS. I showed her the book on MDS the doctor gave my mom.

On Feb 23, Mom gets her blood tested and Fri the 25th we see the doctor. I have all the questions you sent me. I have been listing all my questions so I’ll be ready.

The nurse acts like this is no big deal, and lots of people around her have MDS.
Stanford Hospital is known to be the best in California for treating Mds. After the 25th thats where I want to go.
Look forward to hearing from you
Thanks
Josie

What do you think about that.

[Neil]

Hi Josie,
The portion of her BMB results look ok, except there was no cytogenitics report. It would indicate if there were any abnormal chromosomes.
No increase in blasts is a positive indicator. The docs will probably make an effort to make sure they do not increase.
The nurse seems to lack some understanding of MDS or is simply inexperienced.
Stanford is a great facility if treatment is needed. That is a big IF. Many MDS patients do not get any treatment other than drugs like Procrit and transfusions. An experienced hemo can handle a patient with a low risk. Going to Stanford will provide a second opinion, confirm the dx, explore treatment options and chart a course of action. There is a world af difference between patients considered to be low risk with RA, RARS & RCMD classifications and those medium to high risk patients in all classifications.

[JulieMarie]

HI Josie,

I read your post about your mom still cooking, but at times wears her down. One thing I could suggest is on one of her good days you could help her make up a few meals and have them in the freezer. A friend of mine who is a survivor of breast cancer said this really helped her out when she was on chemo and her worse days. I know it has helped my mom out too who is now on Vidaza and procrit. She’s somehow still working 8 hour days.

Another little tid bit that I would like to pass along to you, is make sure you take some time out for you, even if it is just a bubble bath here and there. I know sometimes I have to take a break from MDS, and helpping my mom out, helps keep things real.

Wishing you and your mom the best of luck.

[Josie]

Hi Neil,

What is the Bone Marrow terphine biopsy and clot section mean.
technical quality: good
Cellularity: 70-80%
Myeloid cells: The myeloid cells are increased. No sheets of blast are noted.
Megakaryocytes: are increased and clustering. Some megakaryocytes with show hyperchromatic atypical nuclei.
Reticulin Stain: shows markedly increased reticulin fiber
FE: Iron is present.

Is my Mom low risk, or midium to high? What part of what test tells me that?
Josie

[Neil]

Hi Josie,
You should address these questions to a hemo or pathologist. Not sure I can answer them clearly.
Terephine biopsy refers to the bone that is removed in a BMB for analysis. Clot section refers to the aspiration sample of marrow.
Cellularity refers to the density of cells in the marrow.
Myeloid cells are blood forming cells in the bone marrow. MDS patients frequently have many more than normal. We produce huge numbers of cells, but many/most are abnormal and are identified, killed and removed.
Megakaryocytes produce platelets. If platelet counts are low, you would expect to see more megakaryocytes in the bodys effort to produce more platelets. Many of them are abnormal and disposed of, thus the lower count. The rest deals with the morphology (structure)of the megs.
Retuclin stain. They stain the sample to see the structure clearly.
Her risk level is assessed by the hemo and or pathologist, based on a number of factors. It would be best to have that clarified by a doc. It can be a bit confusing. For example: If a doc were to review my CBC & BMB without seeing me and reviewing my history—simply looking at the results I would fall into a medium to high risk category as a result of my platelet count and low RBC, WBC. But there are no symptoms of low platelets and my RBC/WBC levels are good enough for me with the help of Procrit. In reality I am a very low risk patient.
Blast level is a very important component of risk level. It takes a bit of time to assess risk and it can change over time.

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