New Member/My Story

[kgtuck]

I am a retired "young" lady and was diagnosed with MDS in June '09 found on blood work done by my family doctor because of fatigue. Diagnosed, bone marrow biopsy, port implanted and 1st round of Dacogen all in 1 week at Memorial Mission Hospital in Asheville, NC. After 3 months of blood transfusions, and platelets, my bloodwork was normal. I have continued to be stable with one week of treatments, 3 weeks off schedule ever since!! I am happy to say I feel perfectly healthy with no real complications!! I am happy that I can continue to enjoy retirement with my husband--outdoor activities; some travel short trips with my 29 year old daughter and walking every day with my chihuahua, Mercedes! What a shocker, tho, after being completely healthy for 61 years!

[Neil Cuadra]

I'm glad you're doing so well, kgtuck. How nice to hear that you get to enjoy your retirement and do what you want.

I have a feeling that your good overall health was one of the factors that contributed to your successful treatment.

I don't think Memorial Mission Hospital has been mentioned in these forums before. What do you think of the care there? Did they seem to have experience treating MDS?

[kgtuck]

Neil, I am real pleased with the group of doctors that cared/care for me in
Asheville, NC and actually how fast I got a diagnosis and treatment which began immediately. But, currently my physician is only treating a couple of patients with MDS with very different subtypes. But, my husband having a master's degree in biology--he is my advocate and is constantly studying the research out there. He has attended online forums with specialists, I think one was held in New York.

I did get a second opinion at Wake Forest University, but they encouraged me to go for a mini (mini because of my age) bone marrow transplant,my blasts no. was 10! but I chose not to do so. I chose the treatment right now because I am doing so well;
and my husband tells me that he has read that new drugs similar to Dacogen and being developed.

One issue for me right now, is, can I extend the off-treatment period a little longer. The specialist in new york addressed that issue in one of his forums.
I actually had to delay 1 week in my treatment schedule because of snow and my blood counts rose higher! But, my doctor prefers not to extend the period right now!

P.S. Blood counts when I was diagnosed: hgb 7; platelets 10,000; white count 1. Currently my hgb is 13.8; platelets 325,000; and white counts varies between 2 - 3.8--which is the only cell line that varies at all! A non-smoker with no chromosome abnormalites. No family history of any types of cancer. My only history that might account for my illness (I grew up on military bases and lived at Camp LeJeune Marine Base when I was 14 years old) in 1961. Water contamination was discovered in the 1980s. Apparently, the housing development where I lived (in a brand new house) was built on property previously occupied by dry cleaning factories. Many, many former residents of that base were exposed from about 1957 - early 1980s. I would like to correspond with others whom may have lived at that site at that time with unplainable cancers.

kgtuck

Thank you for listening and making this site available!

[Neil Cuadra]

kgtuck,

You should be aware of this forum thread:

Did anyone live or work at Camp Lejeune in North Carolina?

[HarleyRider1176]

Hi,

I turned 62 in January, had my yearly physical, the primary physician said I had problems with low Red Blood count, ran another test and referred me to a blood doctor. I had no idea what Hematologists do, I thought I was getting a B-12 shot.

The Hematologist said my red blood was 4.44 low MCV high at 105.4, my MCH high at 34.9, RDW High at 15.2 and PLT low at 125. He said he thought it might be MDS, to wait 2 months and if my counts don't change he will begin aggressive treatment starting with a bone marrow biopsy.

I'm still thinking I needed a B-12 shot. My only symptons was feeling tired and lathargic but felt it was part of being 62. My head, like everyone who is told they have MDS is "spinning"

[kgtuck]

Harleyrider - From my experience the only definitive test to identify MDS is a bone marrow biopsy. And, don't assume that being tired, fatigue is age related!
I was first told that I may have leukemia (a doctor told me he was 99% sure), but after bone marrow biopsy, learned it was not leukemia, but MDS. And, don't let them start any treatments until you receive the final BMP reports (it took about 4 days my biopsy to get definitive reports back). After my first shock of learning i had this disease, I learned it CAN be managed with treatments and, for me, without any complications or side effects. Hang-in-there!

[MagicBob]

I am a 74 yr. old male and was diagnosed with MDS in December 2010. After consults at Shands Hospital and Moffitt Cancer Center, Both MDS doctors suggested that the best treatment for me would be Vidaza. I just completed my first 7-day treatment yesterday, and now searching for a MDS support group in The Villages, Fl area.
Also if any of you have an IPSS score of Intermediate 2, I would appreciate hearing from you.

Thank you,

Magic Bob (Yes I am a magician)

[Neil Cuadra]

Welcome Magic Bob. A lot of patients could use a little magic and I hope Vidaza is the magic that helps you.

I know that we have a forum member in Lakeland (see this forum thread). That's a couple of hours south of you, right? If you want to look for people closer to your part of Florida you can start a new thread in the Your Local Area forum.

[MagicBob]

Neil, thank you for the kind words, they are very much appreciated. I am wondering about all the different ratings and technical words that you all mention in the posts. What are the important numbers that I should know about, keeping in mind that I have an IPSS rating of Intermediate Type 2. I completed my first 7 day cycle of Vidaza last week, and I am feeling quite tired and short of breath.

Magic Bob

[Neil Cuadra]

Magic Bob,

There are a couple of ways to think about all the medical terms you see here, even though we're mostly patients and caregivers without any medical training. The first is that you can put all of your trust in your doctor, do what he/she says, and ignore all the medical talk. Many people are happy to handle things that way and it certainly prevents you from obsessing over test results as many of us are often tempted to do.

However, most people who come to Marrowforums are the types who want to know more. We each learn a bit at a time so we can better understand the doctor, feel a little more in control of our destinies, can celebrate the ups and accept support during the downs, can explain what's happening to our bodies to family members, and in some cases can really be a partner with the doctor in making treatment decisions.

The most important numbers are the basic blood counts that you see on a CBC (complete blood count) report. Your doctor will give you a copy of your CBC test results if you ask. Maybe you've already done this. The main counts you want to look for are:

• RBC (red blood cell count), HGB (hemoglobin), and HCT (hematocrit) -- low counts would explain your being tired and out of breath
• WBC (white blood cell count) - protecting you from infections
• PLT (platelet count) -- helping blood clot

You can read about these measures at many websites. For example, there's a good rundown at Medicinenet and there's an old but still very readable article from the National Institutes of Health. Low counts are a symptom of MDS. Be aware that the treatment you are getting may make your counts lower at first instead of boosting them. Kind of ironic, isn't it? What you are looking for is improvement and higher counts over time.

IPSS scores help the doctors classify your MDS and put you in statistical categories, and there are other scoring systems they can use, but what's most important is how YOU are doing and what care YOU should have, not which categories you fall info. The scores may give clues to the best treatment and that's why they are useful to the doctors.

If you want to learn more about the disease you can read about MDS here at Marrowforums, get Your Guide to Understanding MDS from the Aplastic Anemia & MDS International Foundation, and/or read Understanding Myelodysplastic Syndromes: A Patient Handbook from The MDS Foundation. If you get through all of that then you know more than the average patient!

You can also post questions you have here and we'll share what we've each learned from our own experiences. Your doctor is the real authority but many of us have learned enough to answer questions, especially about the jargon we all keep hearing. It's a lot easier to ask about what's on your mind than to go off researching every question on your own!