Dont know what to do

[JohnJames]

Hi all. I just received some news from my parent that they was diagnosed with MDS. When they were telling me about it I never really displayed any type of concern because I had ZERO clue what MDS was at the time. They told me that their doctor said their blood test indicated that they is no where near needing a transfusion or bone marrow procedure and that all they would do is check their blood monthly. But after doing some research online afterwards, im starting to see that its a very serious disease and its scaring the crap out of me. I dont know any doctors and me and my parent live in separate states so going to their appointments with them is kind of out of the question. I was hoping the community could help me with a few things:

Is MDS always fatal? My parent is early 60's and in phenomenal health. Some prognosis online I have been reading say low risk patients have a 6 year prognosis. They didnt mention any of this and probably wont to me. Do people live long lives with this?

Is MDS hereditary? I have 3 siblings and 3 children of my own. Are any of us at risk for developing it later down the road?

They go to Vanderbilt for all their treatments and stuff. Is this considered a good hospital for MDS? I know its one of the best Neuro hospitals in the country but dont know much about its Oncology credentials.

Very nervous and very scared right now. Thank you in advance.

[ccnarayanan]

The first thing you can potentially do is to take a deep breath and educate yourself with the enormous amount of online literature available around MDS. Just give a Google search and you can really get hooked into it. But bear in mind to capture the relevant and credible information from the massive wealth of information available online.

Now, to answer your questions:

MDS is a family of diseases of the bone marrow resulting in inadequate and inefficient production of various blood cells from the bone marrow - red blood cells to carry oxygen to various organs, white blood cells to combat disease-causing germs, and platelets to help clot the blood when there is bleeding. The problems in these types of blood cells can be present in isolation or in combination. MDS can be fairly benign or serious depending on the kind of abnormalities which exist in the bone marrow. Some MDS patients may not notice any issues and live for several years whereas some others are high-risk whose life span can be limited even with medical intervention. So you would really need to find out the details of abnormalities which exist in the bone marrow. Please go through the doctor's reports and read from online what tests need to be done to properly diagnose MDS, its subtype, and prognosis. MDS is a disease which can be fairly managed with timely and appropriate medical intervention.

There is no evidence that MDS is hereditary although the severity of MDS is often linked to the chromosome abnormalities of the patient. Nobody clearly knows what causes MDS although some people have attributed lifestyle factors and exposure to benzene.

There is no clear evidence that MDS is contagious. In fact, people around can pass on infection to the MDS patient, particularly if the patient has problems with white blood cells.

Not sure about Vanderbilt or other hospital - you have not mentioned which city or country you live. Regardless of your location, take a look at Dr. Azra Raza's online videos / articles to get a first level perspective.

[Birgitta-A]

Hi JohnJames,
There is only one cure for MDS and that is a stem cell transplantation (SCT). Low risk patients can live many years with supportive treatment and your parent doesn't need any treatment att all for the moment.

Very positive that your parent doesn't have any other diseases.

The info about prognosis for MDS patients is old - often from 1997 when there hardly was any treatment at all.

As ccnarayanan write MDS is not hereditary.

In the Home page of this forum you can find info about different clinics at Medical resorces. Vanderbilt is labled NCI which means:
The NCI label NCI Comprehensive Cancer Center indicates a Comprehensive Cancer Center as designated by the National Cancer Insitute (NCI). These U.S. treatment centers have been found by the NCI to have "demonstrated reasonable depth and breadth of research activities in each of three major areas: laboratory, clinical, and population-based research, with substantial transdisciplinary research that bridges these scientific areas" and to have demonstrated "professional and public education and dissemination of clinical and public health advances into the community it serves."
Kind regards
Birgitta-A
75 yo. Dx MDS Interm-1 2006. Supportive treatment until 2010 when I started to take Thalidomide. Positive response. Now taking Revlimid since 2013 with good response. HGB 13.7, WBC 5.6 and platelets 124.

[JohnJames]

thank you guys so much for the reply. Its such a scary thing. I didnt want to start running through google where you only find doom and gloom in less than four clicks.

[triumphe64]

James,

Contact www.AAMDS.org

They have loads of information and advice.

[bebop]

Do you have siblings that live in the same state as your parents? If so I would highly encourage them to go with your parent to the dr appt. I do feel your parent should get a bone marrow biopsy though for a clear indication of the type of mds they have and maybe more info on the next step if any. early 60
s is not too old to have some type of transplant to help them with a long life.
Best Wishes
Elaine

[Barb M]

On mds-foundation.org, there is a listing of MDS Centers of Excellence.
Here's the information for Vanderbilt
Vanderbilt University Medical Center
Nashville, Tennessee
Madan Jagasia, MD
Stephen Strickland, MD

The mds-foundation.org is another great source of information.

As well as Mayo Clinic.
http://www.mayoclinic.org/diseases-c...n/con-20027168

Fred Hutch in Seattle is the premier MDS Bone Marrow Transplant site.
Fred Hutchinson Cancer Research Center
University of Washington
Seattle Cancer Care Alliance
Seattle, Washington
Joachim Deeg, MD/Elihu Estey, MD

Go on aamds.org and see if there is a Community of Hope in your city.
If so, you will have support from local MDS patients who can answer your
questions face-to-face. Aamds.org has excellent webinars that you can view and gain information on many different aspects of MDS.

Education is so important with this disease.

[Caregive]

Interesting to see Dr. Deeg in our list. We went to him for a second opinion. There is a World Health Organization method of figuring out the odds of living long. So many factors involved and at some point you'll have a handle on the pieces of the puzzle that is MDS. Keep looking. You can even talk to someone on AAMDS.org. Go to that site and look for the topic for that.

[Cheryl C]

Hi JohnJames - the following may reassure you a little:

http://www.sciencedaily.com/releases...0624173242.htm

Knowledge is power!

[pleasant1911]

To the OP, I am in the same boat. My father was diagnosed with MDS about a two months ago. Mid 60's. I been doing the same thing and guess reading the same articles too, because I also been reading those gloomy outcomes.

I have three kids and one sibling and worry and starting thinking about MDS and everybody else. I heard people can survive for a long time, so keep you hope alive. I am worried about my father, and doing crazy amounts or research. He got his revlimid a week ago, and been taking it for about four days now.

Good luck with your parents, and dont get overwhelmed by the survival rates and stuff like that.