Please Help

[Leeman]

Hello all,

My wife was just diagnosed with MDS (RAEB) and is currently in the hospital undergoing Decitabine treatment.

Prior to today I had no knowledge of this disease. The doctor (Walter Reed Army Hospital) gave the impression she would have about 1 year until she dies. This obviously was unexpected and we obviously freaked out.

I was wondering if you could post some things that I should be doing such as questions to the doctor, helping my wife or just links to info.

Thank you for taking the time to read this.

[Caroline]

Hi Leeman.

I am very sorry to hear of your wife’s illness. You came to the right place to express your concerns and to seek help. There are so many posts on this forum which can help you with your fears that I cannot begin to list them. When you have time, read as many of the posts as you can. That is what I did at this time last year when we found that my Dad has CMML. This forum has helped us from the first day that I found it.

Alot of the people you will read about have beat the statistical odds. There are alot of ways to deal with these diseases and there are alot of successes.

Best wishes to you and your wife. Please keep us posted.

Blessings,
Caroline

[kristyk]

Hi Leeman
I learned the most from this forum. I went back and read every post, even if it didn’t fit our situation. It helped me learn the language of this disease. It helped us know what questions to ask the doctor. It really helped to see many folks living with the disease. Like you today, most of us had never heard of MDS until that strange moment when the doctor gave the news. What? What does she have??
First I would encourage you to look past that one year prognosis..Many here have blown past that statistic. Some have achieved long remissions. It is a tough disease but they are finding more treatments every year. The decitibine is one of the newest and only approved in recent months. There has been some good responses with it. It is allowing people to manage the illness longer and better. I would encourage you and your wife to really be prepared for it pulling her blood counts down initially..means it’s working though. It will pull her white count low, so wash and wash your hands, wipe down surfaces obsessively around the house, car, everywhere she is, be careful not to get around anyone who might be sick. She is going to have to be very careful because it is small infections from everyday germs that seem to take people down with this disease. Be obsessive about it. It will pull her platetlets low, which allows the blood to clot and stop bleeding, so she needs to avoid getting cut or falling when the platelets or low. My mom avoids cutting her nails, chopping veggies all sorts of everyday things when her platelets are low. She will need to know signs of low platelets so she does not get too low, gum bleeding, more bruising, little red dots on her body, nose bleeds. If need be they can support her with transfusions which will keep her from getting so low that she could be at risk of bleeding internally. Her red blood count will also get pulled down, which means she will get tired easily and might need transfusions. You will both become familiar with CBC labs and know what counts to look at..white, red, hemoglobin, platelet, neutrophil…these are the ones we eye first.have the doc or nurse sit down with you and explain what each count is in a CBC…
There is a so much to learn. I must tell you that my mom was given similar diagnosis feb 2005. We were told same. We have past the one year mark. Other than being tied down getting labs done, treatments, and transfusions when needed( this is high maintenance disease!!), she has remained in pretty good health, has felt pretty good..life has not changed a whole bunch for her. We have hit a few bumps with hospital stays, but in general have been blessed with the fact that she hasn’t felt all that sick. My mom did progress to AML ( Acute myeloid leukemia) Still fighting, still feeling good.
Honestly, when my mom asked the big question from her doctor..how does one actually die from the disease..he said infection and bleeding. Bottom line. Knowing this helps..precautions can be taked to the best that one can.
How old is your wife? Did she have other options presented..transplant, other chemo’s? Walter Reed is good facility but is it a center of excellence for treatment of MDS? Did she have a bone marrow biopsy..what was the blast number. Blasts are the immature sick cells in the marrow. The higher the number means more disease..at a certain number the diagnosis changes from MDS to leukemia. Also know what the blast % is in her blood when they do labs.

Ask a lot of questions of the doctor. Be careful when reading stuff out there on MDS.. stats are old, it can be discouraging.

I wish you well. Hang in there. It can be overwhelming. Cliche..but we have learned to enjoy each day.

Kristy K

[SandyB]

Good Evening Leeman:

The other information and opinions you have received from the other forum members is very good and I am sure that it has helped you.

My advice to you falls into a different category. From this day forward, if you and your wife adopt the philosophy of “Just One Day at a Time” you will be wise.

This disease has many hills and valleys, and affects each individual differently. There does not seem to be a template to which all can adhere to.

Pray often, eat as healthy as you can, get extra rest and enjoy all the things you always have with just a little more appreciation.

If you can “Take One Day at a Time” and not look down the road too far with anticipated dread, you will both benefit. Every single day there is something new found about this disease, and it is only a matter of time until all the right answers to the questions will be found.

In the mean time, welcome to a place where we all understand and will be willing to share whatever we can.

[Russ]

Kristy & Sandy, Those were great answers for Leeman, I am encouraged by your comments. It becomes difficult to recall where your are now from your prior posts. Kristy, was your mom able to get back on decitabine and how’s she doing now? Sandy, what is the latest on your husband’s AML and treatment? Just saw the posts on MD Anderson where it mentioned Dr. Jeffery Moldrem’s vaccine and the remissions – how exciting, it would be nice to know an update on those trials. Prayers to all.

[Terri]

Leeman, I have been on this post since my husband was diagnosed a little over three years ago, When first dx our doctor did not give a life expectancy, however when I read up on the disease it freaked me out as well until I found this forum. Bob is RAEB-T we just had his visit yesterday with the Hemotolgist and he said he is doing Great, still holding off on the Vidaza. As Sandy Said One day at a time, If you read some of my other post we have been on quite a roller coaster ride. You have to just stay positive and be sure you have a doctor experienced with the disease and one that you are most comfortable with. When Bob was in the Hospital naturally we get the on call doctors from the practice, It is just not the same, once he sees his Hemotologist it always puts him at ease.

My prayers continue for all battling this terrible disease.

[chuckk333]

Terri–
You mentioned that Bob is holding off on the Vidaza, but in you summary it says that he is on Vidaza. Since I am consideering going on Vidaza, even though I am symptom free, I am interested on the details.

[Author]

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