New to MDS

[SRMaven]

Hi,
I have just been diagnosed with MDS. Dr says it’s the RA. I get a little tired; had to quit work but I do not feel terribly bad.
I am scared. What is going to happen to me? The dr says serious; get my will in order…WHAT!!?? I then read and learn I am going to die in 2 to 10 years.
I get procrit inj’s 60K once a week + take folic acid & B6.
Can someone direct me to where I can learn about what is going to happen to me? Do I slowly get weaker and weaker or suddenly drop dead?

Any help or direction would be appreciated.
Best of Luck to all.
Stephen R.

[patti]

Stephen,

First, don’t pay too much attention to those tables that give a time prognosis. According to those tables my MIL only had 4-6 months to live. We’re past a year now and she feels well with occassional tiredness when she needs a transfusion. Second, you’re doing the right thing about getting educated. Learn as much as you can about your disease and all of the options for treatment. I’m not real familiar with RA but I believe there is lots you can do to take care of yourself both medically and naturally. Folks on this list can give you info on both of those. Third, it’s probably just a good idea to have a will in order anyways. Regardless of your age or sickness, that’s just a good life thing to do.

Yes, this disease is serious, but I do not believe it has to be a death sentence in the time the doctor says. Keep a positive attitude, take care of yourself physically and learn what will work for your body. And quiz people on this list for info because they’re a wealth of help and encouragement. YOu can also check out the MDS foundation website for information.

Best Wishes,

Patti

[Sandy M]

Stephen,
welcome to our family, although I’m sorry you have a need to search us out.
I also live in Ca. where in Ca. is Palm desert ? I’m in Northern, anyway there are two very good hospitals that I know of here, one is in L.A. it’s called the “city of hope” and one is in Palo Alto called “Stanford University”, If you haven’t done this already, I would have your Dr. recomend you to one of these for a second opinion by a Dr. who specializes in this type of illness, and as Patti say’s (and others will agree) that thoes lil black books the Dr. pulls out to tell you your median survival rate, is VERY stale, these type of bone marrow diseases are very individualized and scarey and confusing in the begginning , but as you’ll learn about YOUR illness you’ll feel more in control…your among friends here, we all share a common bond,

[Chiparoo]

Stephen R.,

I understand your fear. The one thing that I can relay to you is to not panic about everything you read about our ailment. I recall the first story I read on survival gave me 2 to 96 months to live. What’s that all about?!? Is this in case you chose NOT to be proactive about your therapy? And the warning panels for some of these drugs they give us – check out the side effects for Vidaza! When I started to freak out about this info, the guy that administers my injection said to look on the back of a Tylenol bottle. You’ll probably find MORE warnings for side effects! This, no doubt, helped me feel better.

The bottom line is – stay informed, but don’t let yourself be overwhelmed by ALL the information. This forum is by far the best place to share your concerns and get information. This forum has helped me stay positive about my survival. We all have a lot to live for!

——————–
Diagnosed with RARS April 03. Unsucessful month with Thalidomid (nerve damage) Jan 04. Advanced to RAEB. Currently on 7 day regiment of Vidaza (2-3 times), weekly Procrit and Neupegin. Have had 2 platlete transfusions and 1 blood transfusion.

[JulesH]

Stephen,
First of all MDS does not kill you, what kills you is the MDS weakens your immune system and some other disease takes over.

I had a strept infection one month and was hospitalized for most of July 2004, then in August 2004 I had a staff infection that put me in intensive care and I along with my doctor figured I had a few months left at the most.

The staff infection attacked my aortic valve in my heart and did considerable damage.

My doctors decided to put me on VIDAZA which had been available since July, 2004. I started on VIDAZA in September 2004, I had open heart surgery to replace the aortic valve in July 2005.

My doctors think I am in remission and my heart surgeon has released from his care and is amazed at my progress.

I am back to playing golf and feel that I could live another 15-20 years.

There are new treatments coming out everday so don’t give up.

I also had a lot of people praying for me and I am sure that we at this forum are praying for you.

[diner]

Stephen, I’m sorry you feel so threatened with your news. I have gone through those feelings too with my secondary MDS, but you have to have faith. Our bodies are all different and I hate it when they put us in a catagory. I wasn’t suppose to live past year 2000 and now I have MDS in year 2005 but figure the Vidaza will keep me going. It’s hard but I live a very happy life no matter what and try to stay positive and strong. Of course I do have my weak moments. Keep your chin up and we’ll pray for something great to come along (you never know).

[Terri]

Stephen, You will find a lot of support and answers here, it has been such a comfort to me since I found this site, I have learned so much from others.

[Sandy L]

Stephen , you have come to the right place. We are all in the same situation and we root for one another. Ask lots of questions. Stay strong

[Jimbob]

Stephen,
City of Hope in Duarte CA may be a good place to contact. They do have a lot of experience with MDS and are reasonably close to you. Don’t go too much by out of date information on MDS, thngs are changing constantly. That is why you need to work with doctors who have a lot of patients that they are treating successfully instead of just your local doctor.
You do have many people praying for you and those who support you and will help you to get the information you need as quicly as possoble.

[lindajo]

Stephen, When you read those statistics they are based on the fact that until the past 5-10 years only older men were diagnosed with the disease.

I was one of the rare younger women diagnosed. In 1991 I was only 30 when I was handed the same statistics. In January will be my 15th year. It will take years for the stats to catch up with reality. Now that doctors are better at recognizing the disease more and more younger people will be diagnosed. As we live longer than patients who start at 70 the stats will improve. Right now I consider the stats to be worthless.

RA is one of the most survivable forms. Make sure that you learn to read your bone marrow results and CBC’s (complete blood counts. This site is a good place to start and the forum is invaulable. Also clink on links from the forums home page and register with the aplastic-anemia myelodysplastic foundation. It is a separate organization. They are at http://www.aplastic.org .Call them and ask for their patient information packet. It is one of the easiest sources to read. To understand the disease on their site is a webinar mini film. It is a presentation by Dr. Mikkael Sekeres of the Cleveland Clinic that he gave to patients at the AA-MDS convention in MD last year. Go to I believe Events on their website and clink on it. That should bring up webinars.
You can watch his presentation over and over until this disease makes sense.

There are also great sources for reading your CBC’s. I found one of the best through this site. I have to go to another file to get the web address for it so I’ll post it later.

Get a nutritionist referral and also keep fit by working out. I use yoga and aquasize to help with muscle soreness and bone pain. When I am feeling better I work out using weight machines at the YMCA. Use the lowest weight and work with more repetions. It keeps the muscles from being overworked with higher weights.

Your physician gave you good advise though about writing a will and keeping it up to date. Every adult should have one. Especially those who live near the coastal areas lately. MDS doesn’t make it more necessary. You needed one anyway.

We will all be here to support you. First you need to spend some time learning as much of the MDS lingo or language that you can. Stay positive. Lindajo

[SRMaven]

Many, many thanks to all of you. I am overwhelmed by all of your concerns and loving advice. I will certainly become more informed.

As I am new to forums in general, this being my first, are there any suggestions on how to best work this site; or any “threads” to follow?

I am here now and hope to remain in touch with you all. Again, many thanks. My prayers will be with you.

[Neil]

Hi Stephen,
There are a few basics involved in the treatment of MDS.
It is imperative that you are treated by a hematologist experienced in treatimg MDS particularly RA.
As a rule the most important factor with RA is keeping your red cell count up.
Is the Procrit boosting your RBC and HGB? If it does not provide the desired results ask about Aranesp. Similar to Procrit and lasts longer between shots.
Did your doc check your iron level? Procrit needs at least a normal iron level to work!
If Procrit and Aranesp are not successful, you may have to go in for periodic packed red cell transfusions. They can sustain a patient for years. I have a friend who has had over 400 TX over the past 15 or so years. If TX become necessary make absolutely certain they use irradiated/filtered blood. If necessary demand it. It will prevent potential problems in the future. Don’t take no for an answer.
The tired feeling is from your low red cell counts. Not getting as much oxygen to your organs as you used to.
MDS is rarely fatal, particularly with RA. The problem lies with the effects it has on other parts of the body. Low red counts can make the heart work harder. Low white counts can open the door to infection. Low platelets can create bleeding issues.
I gave up alcohol, eat a low fat low carb diet take a multi vitamin, Vitamin B6, and vitamin C. Get as much rest as I need and get as much exercise as I can tolerate. Check out the exercise with your doc. LIf red counts are low it could be a problem.
Again— make certain you are being treated by an experienced hematologist.

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