Just Found out my dad has MDS

[hope&faith]

In the past year he has had several issues and it seemed as if he was having infection after infection and high fevers of 100.5 and + put him completely out of commission. Is this normal? Also, he told me that over the past year the DR’s believed he was bleeding but they could not locate it, so they determined it was crones. Now I wonder if all of these incidents are from MDS. Just trying to understand and support my dad. Also, does anyone know if UCSF has a good mds program?

[sugarwhale]

Dear Hope & Faith,
Certainly I’m no doctor, and I can’t tell you that your dad’s symptoms are from MDS and not something else. However, I can give you some good information about MDS that you might find helpful.
First, MDS is a serious, most often (some say always) fatal disease. You need two things to wage a successful fight against it. First, you need to learn all you can. This forum is helpful, as is the MDS Web site and its links. You can also “Google” it! The second thing you need is a fine oncologist/hematologist who specializes in MDS. If you phone the 800 number on the MDS Web site, someone can help you. You need a “center of excellence,” and I have no idea what the situation is like in Hawaii. The doctor will most likely do a bone marrow biopsy. This will tell you a great deal. Some classifications of MDS are more serious than others, require different treatments, respond to different therapies.
I can only tell you that my mother has not had any problems at all with bleeding. She has “refractory anemia” (anemia which won’t go away with treatment), is transfusion-dependent and has chromosomal damage. A bone marrow biopsy will tell you which chromosome(s), if any, are involved. My mom does not have many blasts. Some of this is good news: no excess blasts, no sign of transforming to acute leukemia, and white blood cells and platelets are OK. The bad news is that chromosome 7 is involved, and this isn’t a good sign. You need to know all of the details about your dad’s MDS. Just knowing that he has MDS isn’t enough. You also need to make yourself aware of the drugs that treat it. Sometimes they work, sometimes not. Often, after working for a short time, they’ll stop working. Most of the people on this Forum have explanations on their posts about what treatments they have had. You’ll find that everyone of us are different. One person, for example, will respond to valproic acid, others won’t. Procrit shots help many, but not my mom. Therefore, you need to learn everything you can about MDS AND about your dad’s specific condition. Get the very best specialist you can possibly find. I wish you and your dad the best of everything. Know that I and all of us at this Forum are thinking of him and of you.
Best wishes,
Janet

[Luke and Margaret]

Hello Hope
The learning curve to understand this didease is a very sharp one – when I first started learning, it felt like I would never understand it all. But you will.

There are two reports that you are going to want to learn how to read and understand:
Blood lab reports
Bone Marrow reports

I found the tutorials at this web site to be incredibly helpful. The topic area is a specific form of leukemia, so not everything will apply to you. However, the tutorials about blood cells and monitoring in the resources section may fit for you.
http://www.cmlmedicalmonitor.com/home_cmlmedicalmonitor.asp

Welcome. I think you will find this forum an incredibly helpful source of support and information.
Margaret

Other Resources:
http://www.hematology.org/
http://www.aamds.org/aplastic/
http://web2.airmail.net/uthman/blood_cells.html

[CarolineG]

Hope & Faith

My Dad had MDS for 3 years that we know of. All of his doctors say that he probably had it alot longer. The initial problem which he saw his Family Doctor for was infections. He was always battling really bad colds. One cold would end and a week later another would start. He got referred to an Immunologist who diagnosed MDS and then Dad was sent to an Oncologist/Hemotologist who monitored and treated Dad with Vitamin B6 for the whole 3 years. Dad never missed a beat. He walked for an hour every day, bowled in a league, gardened, took care of his property…basically lived a very normal retired man’s life. He tired out easily and lay down whenever he felt that he needed a nap. We never really saw that he was ‘sick’. This past summer his MDS transformed into CMML…Chronic Myelomonocytic Leukemia. His kidneys have also been compromised and now he his Chronic Renal Failure as well. We just brought him home from hospital this past Friday after spending a week. He was treated for E-Coli Sepsis and C-Diff Colitis. Both…infections. He also bleeds alot. He has blood in his urine all the time and he quite often bleeds from his bowels. I am still learning but I think that the bleeding has to do with Platelets. Could someone please correct me if I am wrong?

There is alot of information regarding MDS out there. LOTS within this Patient Forum. A diagnosis of MDS is not necessarily a death sentence. I have a microbiologist living next door who runs a blood bank for a hospital. He said that he transfuses blood in patients who have had MDS for over 20 years. My Dad wasn’t so lucky. His transformed into Leukemia much too quickly. Mike’s advice is to keep the immune system healthy. Lots of vitamins and supplements.

Learn as much as you can for your Dad’s sake. The people on this Forum will be a big help to you. They are to me. I read postings twice a day without fail. The knowledge is unsurpassed.

Good Luck,

Caroline

[hope&faith]

Thank you all for the prompt responses and the wealth of info. I need to talk with my dad and his doctor to determine what type of MDS. The DR did use a term called displasyia. Any advice…

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