Myelodysplasia Support Group

I was diagnosed last October at the age of 59. I have 5q minus syndrome which my doctor said was good news in the realm of types of MDS. My hemoglobin was about 9 until May when it dropped to 8.5 which it remains. My white blood cells are also low, platelets high. My doctor said his hope is that I remain stable for 5-10 years before needing treatment. I ave blood drawn every 6 weeks, and see my oncologist every 3 months. My lifestyle hasn't changed except for the fatigue. Some days I take a short nap which helps. I am blessed in that I am a retired teacher and do not have to go to work everyday. I am very active, filling my days with volunteering activities and the normal routines of life. I am thankful to have a normal life at this time and hope it continues. I do feel badly about those who are really suffering from the effects of MDS. You are in my prayers.

I was recently diagnosed with MDS June 2010. I'm 57. Since I'm in the early, early stages, my MDS has not been classified into a type. I guess the hardest part is waiting to see when and if the disease will progress. I do work so that's another issue for me, waiting to see how long I can keep doing it. Has anybody applied for disability? Just curious to know what my options are. I too have some fatigue, but otherwise my life is fairly normal and pray that it continues.

Hello, LibrariaDeb!
Unfortunately it is almost impossible to predict how fast this disease is going to progress. It appears clear though, at least from all the literature I have read on the subject that it will progress and the outcome is something not to be looking forward to. Personally I have not given any thought about my job in the future, but I keep myself informed about all medical options. It is very odd that your doctors have not classified your disease yet. May I ask you what is wrong with your bone marrow? I have low platelets (in the 99-115), slightly low red count, large red cell volume, abnormalities in q 20, and I have been classified as RA.
Where do you live?
best
bagleyviola

I too am low risk and am 56. I have been going to the oncologist for 4 years now. It was just within the last 6 months that I was told what my actual diagnosis was. I have had 2 bone marrow biopsies (Jan of 07 & March of 09). Both times I was told that my bone marrow was abnormal, with the last time showing alittle change from the first one. Other than that, my doctor did not go into much detail. So I have been put on the wait and watch list. On my last visit in July my platelets were 76,000 (about 20,000) lower than 3 months previous (normally my counts range 90000 to 115000), my white count was 3.1 and red count was 13.1. My doctor has not said much regarding this syndrome, just that he would monitor my counts. Until I started doing research on MDS and found this sight, I now know what sort of questions to ask my doctor when I go in on Monday, Oct. 25th. I too go through periods of fatigue. Sometimes in the late afternoon, it is all I can do to continue working at my desk. There are good and bad days where that is concerned. Other than that I am doing my best to live a normal life. I think the hardest is the wait and see but I really try not to dwell on that. Hope everyone has a great day!

Dear Janet,
I am surprised by the number of patients whose doctors don't tell them what the diagnosis is. I think it's our right to know what we have and what treatments are available to us.
How often do you go for blood work? If your platelets continue to drop, if it were me, I would ask the doctor to do another bone marrow. Especially since you are beginning to develop symptoms- the fatigue. Your hemoglobin is actually good at 13.1, and usually it's the low hemoglobin that causes the fatigue. That isn't your situation. Your white cell count is a little below normal. There can be some variation in the counts from one blood draw to the next. This is normal and may not mean anything. What you are looking for are trends. If platelets drop again, or any other values start to fall, then it's definitely time to start asking your doctor for some frank answers if not before. Unfortunately, I think patients have to be more informed these days. MDS is a very complex disease, and the more informed we are, the better able we are to select our doctors and ask questions.

best wishes,
Sherry

Sherry,
Thank you for your response and your good advice. I do have a follow-up with my oncologist Monday, Oct. 25. He told me in July that he would more than likely do another bone marrow biopsy depending on the counts of my next visit. I was going every 6 months for the past 3 years for blood work but since March of this year, he changed it to every 3 1/2 months. I am very thankful that I found this group, it is very informative. Until now, I was unsure what to ask my doctor about MDS, but I now have a list for him when I go in Monday. I will post an update on my counts. Have a blessed weekend!

I too find it odd that my MDS has not been classified into a type at this time. But I go to Mayo next month and perhaps that specialist will classify it there. My platelets run low, 90-101, and the white blood cells run low too. I did ask my oncologist here in town if the disease was terminal and he did say yes. From May 2009 - June 2010, I had blood work every 2 months. When I went back in August, since things remained fairly consistent for the past year, I don't go back for 3 months. This is a roller coaster ride. I try not to think too much about the disease, I just keep on truckin'
BagleyViola I live in Iowa so Mayo will be a close trip for me. I'll keep everyone posted about the trip up there.

Hello, Libraria Deb!
I am glad to hear that you are going to see an expert at Mayo. I am sure that many if not all your questions will be professionally answered. Its hard to believe that your doctor at home told you that the disease is terminal. He/she must not be aware of the practice of bone marrow transplant which at this time is the only possible cure to the disease. One of My doctors in Los Angeles told me that she is following a MDS patient who has not shown signs of progression for over 10 years! So, I would not take things too seriously!!!!!!! Each individual is different from the others and we all have very peculiar ways to fight diseases. Keep a positive attitude and avoid thinking too much about what you read/hear about the disease. And let's hope to have many many more years to go. Perhaps in the meanwhile medicine will have found the magic potion.....Keep us posted and be well!

I just wanted to update on my dr appt today. My wbc was 3.5, red blood count 13.4 and my platelets rose to 87000. My Oncologist did confirm my diagnosis of MDS low risk. He did talk about my future and basically it is doing just what he has done in the past. Continue to monitor my counts, the wait and see approach. He opted not to do a BMB today since my counts had come up. I was thankful for that. He set my return visit out for 6 months, unlike the 3-4 months that I had been doing the past year. Hopefully that was a good decision. All in all, I felt pretty good after my appointment. I look forward to see if others are having the same experiences that I have had.
Take care to all!

Dear Janet, Thank you for sharing the wonderful news!! Your numbers look great even if your platelets are a little low. Congratulations! I think watch and wait is a good decision. If you start to have any symptoms- fatigue or easy bruising- I'd make an appointment before the 6 months. But if you feel fine and have no symptoms- enjoy life!! Again, I'm really happy for you!

Sherry