How long can u have MDS without symptoms?

[Steph]

Hello-

I have not been diagnosed with MDS. My hematologist/oncologist suspects however that with my CBC's and after eliminating other possibilities, I most likely have MDS. My CBCs have been consistently out of range (but not bad) for about 4 years. I don't have any symptoms so he thinks we should wait to do a BMB until I start to experience symptoms. My question is--how long can you have abnormal CBCs before symptoms typically show? I'm 40 years old. Is it possible that this could go on for 20-30 years before before anything serious happens? Has this type of thing been discovered on anyone else's routine blood tests with no symptoms--and what happened? I've tried researching this question but haven't found any answers.

My blood test looks like this (if it makes a difference):
WBC 3.2 (4.0-11.0)
RBC 4.1 (4.2-5.4)
MCH 32.7 (27-32)
PLT 106 (150-450)
MON% 10.3 (4-8)
NEU# 1.7 (2.0-7.4)

Thank you so much for any info you can give me!
Stephanie

[Paula W.]

Hi Stephanie,

My mom has MDS. She may have had it for many years but didn't know it. The symptom she had was complete exhaustion. She could hardly walk w/ out stopping every few feet. At that time she had blood work done that showed that her HB was at 4. So her organs were not getting the oxygen they needed because there wasn't enough blood. At that time they also realized that her platelets were low. That's when she had a BMB done which confirmed MDS.

I hope this info helps you. I'm sure there are other symptoms but I think fatigue is most common.

All the best.

Paula

[Neil Cuadra]

Steph,

Your blood counts are on the low side but people can live normally with counts like that. You might have MDS but you could also have aplastic anemia or another bone marrow-related disease. Has your hematologist/oncologist said why AA isn't also a suspected possibility?

Even if you were found to have AA or MDS I don't think doctors would choose an aggressive treatment, maybe no treatment at all since you don't need transfusions. The reason is that treatment might not be worth the risk if your counts are low but stable. If your counts are dropping that would be another matter.

Bone marrow biopsies are unpleasant but pretty safe, and that's really the only way to rule in or rule out possible diagnoses. But if no treatment would be warranted anyway, a diagnosis may not be critical.

[Steph]

Thank you for responding. I've had two hematologists and one said it could be aplastic anemia but the last one said he thought MDS. I used to take the antibiotic Sulfatrim every day for about 3 years; however, the 2nd doctor said that since I don't take it anymore, my blood should have returned to normal. That might be why he thinks MDS. It seems I've read that AA is more rare so maybe that is why. They've looked at my blood cells so perhaps that led him to believe it isn't AA? Until I get a BMB (which hopefully I won't need for a long time!), I'm just gathering information so I can be aware, informed, and know what symptoms to look for.

My last CBC showed lower RBC but that's new. It's previously always been in normal range. I get blood tests every 6 months and we just keep an eye on the numbers. Do you know if there have been studies done showing when CBCs first drop to when symptoms show or treatment is needed?

I appreciate your responses and my heart goes out to those that are dealing with these diseases and the uncertainty that goes with it. I will absolutely be including you all in my prayers.

Steph

[Neil Cuadra]

Steph,

It's true that MDS is more common in the U.S. than aplastic anemia. You aren't in the age range where either disease is most commonly diagnosed, so that's not a clue. Only a bone marrow biopsy can determine if you have the dysplasia (bad structure or form) of the bone marrow that would distinguish MDS from AA. Doctors can't tell the difference from looking only at circulating blood.

How to know when blood counts indicate that treatment is needed is widely variable. Some people live just fine, symptom-free, while other people with the same counts suffer a reduced quality of life. Doctors' opinions also vary about when drugs are appropriate to treat low counts, or even the cutoff numbers under which you should get a transfusion.

Since you aren't having symptoms your watch-and-wait strategy makes sense. See the Symptoms of MDS page symptoms that should be brought to the attention of your doctor. The symptoms of AA are basically the same.

[Steph]

Thank you, Neil. If and when I have questions, I now know where to go.

Steph

[sonia s]

My mom is 64. I believe she has had some sort of bone marrow disease for many years - maybe even before 2005. She said she returned from Europe and had an infection/virus in 2005. She was weak, her spleen was enlarged and she had low platelets. in 2007, even though she had a bone marrow biopsy and something wasn't right, they did not treat her and left it alone. It didn't show a specific diagnosis, but now I see that MDS and Leukemia were on its way.

In 2005, they sent her on once a month blood tests to monitor it on a wait and see approach.

In 2009, due to high stress level, which I think spiked her condition, she had another BMB and this time it said MDS. Myelodysplasia. She lost a lot of weight in 2009.

Her spleen was continuing to grow and is uncomfortable. Her platelets have dropped considerably now. Her platelets were at 47 in Oct 2010 and now they are at 5. They went as low as 1 and needed platelet transfusion.

I'm not saying that this is what you have but beware of an enlarged spleen. They should do a CT scan to monitor it. Get a bone marrow biopsy as soon as possible so you know where you are at. Do not put off the BMB. You need to know up front what is going on in your bone marrow.

If something isn't right, the only chance to cut down the risk of MDS/Leukemia would be to get a bone marrow transplant. If you wait too long, you will be too weak to get it.

Low platelets are a huge concern as well as an enlarged spleen and loss of weight over a short period of time. Low energy comes with the territory.

Keep me posted.

Ciao.

[Steve Kessler]

Hi Steph,
I'm now 71 and my MDS was diagnosed 10 years ago. At the time, I was weak and had a grayish complexion. I didn't think I was sick and was living my daily life. We went to a hemo/oncologist who did both a BMB and a "Fish" analysis, both of which confirmed the diagnosis. He referred me to the Fred Hutchinson Cancer Research Center here in town (Seattle). I saw Dr Deeg who said that if I didn't have a stem cell replacement, I would likely die in 2 - 2 1/2 years. At that time, there were no effective drugs like there are today, but the likelihood of a cure was outweighed in my mind by the promise of rejection of the new cells and a low likelihood of living more than 100 days if the procedure was unsuccessful. I decided to let nature take its course and I didn't start to need transfusions regularly for over two years. Later research confirmed that patients with 5q- chromosomal damage would likely live a long time with the disease and then Revlimid came along to further help the survival picture for many people (although it was not effective for me).

Now I'm 71 and, even though they have improved the techniques of stem cell transplantation, I am not in good enough physical condition to have a transplant. I'm starting a new drug trial next week and hope it is effective for me. You never know what will come along!

If it were my decision to make at age 40, I would go ahead with the BMB. At worst, you'll have a sore butt for a few days and at best, you'll have a definitive diagnosis.

The success rate for transplants is much higher for people your age and you could have a permanent cure in a short period of time rather than having a sword hanging over your head for the next 20 years. A BMB doesn't commit you to anything and may just decide to wait it out, but at least you will be informed as to your choices.

Best of luck, whatever your decision.

Steve

[Paula W.]

Hi Steve,

What trial drug are you starting? My mom just started Onconova "Estybon" (not sure if these are spelled correctly), about 9 weeks ago.

Paula

[Steph]

Hi Steve,

Thanks so much for your reply. I'd like to know if MDS is the cause and I do think I should just know and can be prepared. I'm going to mull it over (getting the BMB). I'm scared of the actual BMB procedure. That is what is stopping me. I really, really hate to say that out loud but it's the truth.

I was on a plane yesterday and met a Dr. from Tucson who was an oncologist/hematologist. She was so incredibly sweet, and I asked her several questions. She was very encouraging in saying that medicine is progressing so quickly and new treatments are being developed all the time. She mentioned the first epigenetic drug 5-azacytidine that was in trial when she was in medical school and is now being used. I imagine you've heard of it. I watched a video on YouTube called "The Ghost in Your Genes" that mentioned it. (Super interesting, by the way!) Anyway, she seemed very hopeful about new treatments that are coming out. I wish you the best of luck in your drug trial. I so hope it works for you, Steve!

Stephanie

[Lindano]

I have to wonder just how long one can go without treatment. Dx in Oct. 2010, no real serious complications yet. Have had a cold/flu thing most of winter, still able to function? My Hbc12.0, platelet bounces around from 61-71, rbc 3.5, WBC 1.5 other blood counts slightly off, have had 3 BMB all coming up with more blasts than last. Last one was 18-20% blasts. Dr. tells me I won't live without BMT, none of six siblings match, searching for unrelated. Meantime suggests I get into a trial with a combination of three different drugs. I know from previous breast cancer treatment that these drugs do much harm as well as good. I'm wondering if I should let things go as is for a while before starting any treatment? Any thoughts would be appreciated.

[Birgitta-A]

Hi Lindano,
You know when your blast cells are 18-20% you really need treatment. Combinations are now more common. The best treatment results I have seen is the combination of Vidaza and Zolinza where 18 of 21 patients responded. However it is a very small study.
http://abstracts.hematologylibrary.o...urcetype=HWCIT
Kind regards
Birgitta-A