Just diagnosed with MDS age 40

[arieschris]

I was just diagnosed with MDS. I am 40 years old and can't find anyone my age with this disease. I was told I need no treatment at this time and we are to "watch and wait". I was told my bone marrow biopsy was normal but my white count is 1.4 and platelets are 80,000. Red is normal. I've seen two other doctors who didn't diagnose me with MDS (prior to this doctor) and just said to monitor my blood every 6 months or if I started feeling ill. I'am scared and confused. How long can someone be in the watch and wait period and what's the survival rate for someone my age? Is there anyone else out there like me?

[Bob Macfarlane]

A simple CBC (Complete Blood Count) every month or so should tell your doctor how you are doing.

Since you have been diagnosed with MDS, you must have gone through a BMB (bone marrow biopsy.) A CBC is painless and very simple.

I certainly would not follow the advice of "if I started feeling ill."

There are lots out there like you and you should contact the AA/MDS International Foundation (http://aamds.org/) for educational material and support. They should put you in touch with people that have been exactly where you are at this moment. Certainly folks in here will help you understand as much as we can.

By the way without a BMB it is most likely impossible to correctly diagnose MDS.

[arieschris]

Thank you for the replyI have had 3 BMB over the past six years. My last one in June 2010 I was told was normal (like the past 2). I took this BM results and my records to another doctor this year to be evaluated because my husband and I were wanting to have a baby-but I've had a low white and platelet count since 2002 so I was afraid to become pregnant with this weird condition that nobody can tell me what it is. This doctor told me I have MDS but no treatment is needed until I become ill. I don't feel bad at this time-although I've always felt low energy for many years with body aches if I over exert myself. I think I need a second opinion.

[Janice M.]

Hi Arieschris,

I am at a "watch and wait" stage as well. I was diagnosed at the age of 50 in May of 2011. I, like you, don't have any serious syptoms but since you are wishing to become pregnant I would recommend another doctor's opinion.
A doctor who is an MDS specialist could discuss with you what subtype of MDS that you have, and the issue of becoming pregnant.

I see you are from California, but I am not aware of what city. You could search online or through this forum, for MDS Centers of Excellence, to find one close to your home.

Best of Luck,
Janice

[Hopeful]

Hi Arieschris,

If your bone marrow is normal, why is your doctor saying that you have MDS? I would seek out another hematologist to track down the reason for your low counts.

[arieschris]

Originally Posted by Janice M.

Hi Arieschris,

I am at a "watch and wait" stage as well. I was diagnosed at the age of 50 in May of 2011. I, like you, don't have any serious syptoms but since you are wishing to become pregnant I would recommend another doctor's opinion.
A doctor who is an MDS specialist could discuss with you what subtype of MDS that you have, and the issue of becoming pregnant.

I see you are from California, but I am not aware of what city. You could search online or through this forum, for MDS Centers of Excellence, to find one close to your home.

Best of Luck,
Janice

I live in Orange County. I don't think I will becoming pregnant. Our life has spun in completely different direction with this doctor giving me this diagnosis. I found a doctor who specializes in MDS at Stanford University that I want to see.

Thanks for the reply and I hope you are feeling well and I wish you all the best.

[arieschris]

Originally Posted by Hopeful

Hi Arieschris,

If your bone marrow is normal, why is your doctor saying that you have MDS? I would seek out another hematologist to track down the reason for your low counts.

We are also confused. I had my bone marrow done last year by a different doctor in the area who said I was fine that my counts were low and I would probably develop Lupus over my lifetime. I took these bone marrow results to a university doctor at UCI just for a second opinion before I was to become pregnant. He did some blood work and then called me a week later saying I had MDS. He is looking at my actual slides this week from City of Hope. But, that's what the man said and I even called him back in shock to make sure I heard him right. I read my results as I have a copy and it does say in the comment area recheck if no other diagnosis is made for possible emerging MDS.
I will be having a second opinion....again.

[DanL]

Arieschris,

I am 37 years old, so very close in age to you. If your bmbs are coming back normal and you just have low counts, I am not sure how you can be diagnosed with MDS. MDS requires at least 10% of either white, red, or platelet lines to be dysplastic or abnormal in formation.

It sounds like a trip to a specialist is in order here.

To answer the question about watch and wait, I have been in a watch and wait mode since July 2010. My counts have been very stable with red and whites in the normal range, platelets hanging out at around 25k to 35k, but the amount of dysplasia does seem to be getting more pronounced in all 3 lines over time.

With MDS, many of the treatment decisions are very personal and guided by either best practice or best belief between the doctor and patient, so each person's treatment beginning date tends to vary from person to person, doctor to doctor.

Your visit to Stanford should be very instructive.

[Robi1Knobi]

Hi there, I know how you feel. I had my daughter in 2001 and my HGB was 6, platelets 60, that's when they started following me. I went through several hematologists because I didn't understand what watch and wait meant, noone explained it to me. All I knew was that they kept taking my blood and doing bmb's, but couldn't tell me what was wrong. In 2005, I was diagnosed moderate-severe AA by a transplant doc in Dallas, he was ready to do a transplant on me, but I needed a 2nd opinon. Its a good thing I got one because Dr. Neal Young at NIH said I had mild with a genetic mutation that a transplant couldn't fix! I would suggust you see him because NIH is a government agency with no out-of-pocket expense for labs, testing, bmb's, and you could possibly get on a study. I am responsible for hotel, food, and airfare, but now airfare is covered since I am on a Danazol study. Good luck to you, hope you get to the bottom of things! I would also freeze your eggs so that someday you can either be a mother, or have the eggs for a surrogate. Hugs, Linda

[arieschris]

Originally Posted by Robi1Knobi

Hi there, I know how you feel. I had my daughter in 2001 and my HGB was 6, platelets 60, that's when they started following me. I went through several hematologists because I didn't understand what watch and wait meant, noone explained it to me. All I knew was that they kept taking my blood and doing bmb's, but couldn't tell me what was wrong. In 2005, I was diagnosed moderate-severe AA by a transplant doc in Dallas, he was ready to do a transplant on me, but I needed a 2nd opinon. Its a good thing I got one because Dr. Neal Young at NIH said I had mild with a genetic mutation that a transplant couldn't fix! I would suggust you see him because NIH is a government agency with no out-of-pocket expense for labs, testing, bmb's, and you could possibly get on a study. I am responsible for hotel, food, and airfare, but now airfare is covered since I am on a Danazol study. Good luck to you, hope you get to the bottom of things! I would also freeze your eggs so that someday you can either be a mother, or have the eggs for a surrogate. Hugs, Linda

Thank you for responding. I will look into all of this. I think my first step is a 2nd opinion at The City of Hope. I would love to freeze my eggs but with all the information I'm gathering on MDS it doesn't look like a winning disease. Do you know if someone has lived longer than 10 years with MDS? I can't seem to find any survivor stories-but I'm new to all this.
I hope you are doing well.

Blessings!

[Ruth Cuadra]

Hi, arieschris.

You've already gotten a lot of input and good questions asking about the basis for your MDS diagnosis. Typically, MDS patients have low counts across all three cell lines (red, white, and platelets), but the defining characteristic is the presence of chromosome abnormalities in the bone marrow. This is the information you should be looking for on your biopsy report.

I was diagnosed with aplastic anemia in 1996 at age 41. I had low counts but my chromosomes were ok. A followup biopsy after one round of ATG and cyclosporine came back showing Trisomy 15 -- a very uncommon abnormality -- that changed my diagnosis to MDS. I'm now nearly 13 years post-transplant and living a full, healthy life. I was treated at City of Hope and have the highest regard for the expertise of their doctors.

There are many people who live with MDS for years. For example, Marrowforums member, Kirby Stone, is currently living with MDS. He works hard to maintain his health and keep up on the latest available treatments. I'm sure you will hear from others.

Regards,
Ruth

[noni63]

Hi Arieschris,
I am 46 and I have also been diagnosed with early MDS in 2010 and like you I was told to watch and wait. You defiantly need answers if you want to get pregnant!! I have low wbc (lymphopenia with absolute neutropenia) and rbc (anemia). I have had two BMB one here in my hometown and it came back stating MDS could not be ruled out and the 2nd one was a done in Indianapolis, In. at a center of Excellence. I was disappointed with this particular one, I didn't even see a doctor. They did the BMB and sent me home. They then just called me and said that the BMB was normal. I emailed the doctor and he said there was no evidence of MDS at this time and that my dr. may be correct about the possible early MDS but not to worry because it may not manifest for another decade or so. I asked for copies of both BMB reports. Both pathology report stated there was evidence of dysmegakaryopoiesis, megaloblastic erythropoiesis, and increase in polyclonia plasma cells that may be a correlation with possible immunodeficiency, nutrition deficiency, toxins or drugs. My original dr. sent me to a disease specialist who ruled all of them put. From what I could I tell when I google some of the words, they populated MDS in them. So confused and very tired!!! I actually have an appointment tomorrow. I want him to go over both my BMB in more detail. Hope you find something out soon!

[Scott L]

Hi Arieschris,
Did they check your copper level. I just got diagnosed in July, my first MD diagnosed MDS correctly but I went to a MD that specializes in MDS and she tested my copper level. She said it would be like winning the lottery, very unlikely, but she tested for it. Unfortunately I have MDS and get transfusions every two weeks. Just started Vidaza, one round done. I would not read anything on the internet as it is mostly statistics for the people that normally get this. Usually in their 60's and 70's. My wife limits my research time as a lot of it is negative. Best wishes for you.
Scott

[Duume]

I live in Florida and my wife has had MDS for ten years now. Up until 2months ago Pro Crit worked ok, but she has now gone immune to it and is scheduled to start Vidaza treatments this coming Tuesday. The best at MDS that I know of is Professor Allan List at Moffett Cancer Center in Tampa , Florida. He is the head of his department and is known world-wide for his clinical studies. He was a prime figure in the development of Revlamid. (Moffett is rated the best cancer center in Florida and 18th overall in the US - and they are fairly new with ratings rising.

There are a lot of Dr's who know nothing about MDS but are willing to accept your check. My wife was anemic, weak, basically sick for two years and had seen three different Dr's with no knowlege and no results before we finally got a Oncologist who did the bone marrow biopsy.

[Neil Cuadra]

Your wife is a long-time MDS survivor, Duume, and that's something we like to hear in these forums. Good luck with the Vidaza treatment.

Thanks for the good advice about finding an expert. I'd like to think that doctors are quicker to recognize bone marrow failure diseases then they were 10 years ago, but since they are rare diseases there is still plenty of room for improvement.

Information about Dr. Alan List at the Moffitt Cancer Center can be found on this page.