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MDS for 3 years

This topic has 6 replies, 3 voices, and was last updated 7 years, 4 months ago by Ruth Davis.

Viewing 7 posts - 1 through 7 (of 7 total)

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January 2, 2017 at 2:45 pm #31490

Ruth Davis
Participant

I an 71 years old and I cant find a Dr.that will do any thing,I have been to 3 Dr.and they all do labs and give me a copy.I ask what can you do and they say theres not much we can do.I got on line and found out a lot so I am taking iron and B12 liquid by mouth.My platelets are low WBC are very low and i am at my wits end…Ruth

January 3, 2017 at 8:07 pm #31495

rar
Participant

What is your diagnosis, ANC, WBC, RBC, HCT, HGB. Post the blood tests with their reference range. What did the BMB say. There different types of MDS. Don’t take iron unless it is prescribed by a hematologist.

Ray

January 4, 2017 at 7:16 am #31496

Ruth Davis
Participant

WBC…2.6 platelets…92 neutrophils absolute…1.3 rbc are normal… hemoglobin…normal sorry I dont know much about this MDS but I am trying to learn more about it.I am thankful for any info i can get.The Dr.put me on iron and a B12 shot once a mo.but I am tired all the time.Thank you for responding but I dont know what BMB anc and a lot of the others mean….

January 4, 2017 at 2:16 pm #31497

rar
Participant

BMB is bone marrow biopsy. BMB is used to tell if you have MDS and helps in determining what type. MDS is a family of bone marrow cancers. The type I had is MDS RAEB 2, the worst with a 3 year survival rate of 4%. With your blood counts yours is probably one of the milder forms. There are drugs and transfusions that can prolong life expectancy. The only cure is a stem cell transplant. I had one 2.5 years ago and it seems to have cured the MDS but left me with graft versus host disease. My symptoms of GVHD are pretty much under control. ANC is absolute neutrophils count, disease fighting white blood cells. 71 is still young, I am older.

Ray

January 4, 2017 at 3:43 pm #31498

Ruth Davis
Participant

Thank you so much,I guess you can learn an old dog new tricks.That info was so helpful.my ANC is 1.3 I ask the Dr.about a bone biopsy and he said not now.Thank you so much for filling me in on some stuff,I wrote it down.Thanks again, Ruth Davis,from the hills of Tennessee…

January 7, 2017 at 9:55 pm #31508

JBC
Participant

Ruth – please read 100 Questions and Answers about MDS, published by the MDS Foundation.

Myelodysplastic Syndromes, is published by the Leukemia and Lymphoma Society. I just found it online at https://www.lls.org/sites/default/files/file_assets/mds.pdf

The more you understand, the better you can communicate with doctors. Try to get to a Center of Excellence.

Best wishes.

January 8, 2017 at 9:05 am #31511

Ruth Davis
Participant

Thank you so much JBC this all has been a big help,I have an app. with Dr Hanna at UT medical center.At Hanna cancer associates.Thanks to all of you for helping ,now I know a lot to ask him and start doing something besides lab.
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