Newly diagnosed with MDS RAEB

[dee]

My dad is 72 and recently diagnosed with MDS. He has been healthy and energtic until this condition showed up. They found because he was having trouble with steps and getting severely out of breath. They first thought it was his heart and did all those tests and did a stress test and his heart was struggling so they schedule him for angioplasty and inject with dye. When he was at the hospital they did a blood test and found his count to be 4.5 very very low. He has had 7 units of blood and now he starts Vidaza and Procrit. I have been on the internet non stop. I need all the info I can get. My family has never heard of this condition until now. He has been given 1-3 years as long as it doesn't go into acute leukemeia. Please help. Thank you. You will be hearing from me alot. I am a very concerned daughter. Not ready to lose my young father. dee

[Ruth Cuadra]

Hi, Dee.

Welcome to Marrowforums. Many of our members have found themselves in the same situation you are in: a parent who has been healthy and energetic gets short of breath, has trouble with stairs, and lo and behold, a diagnosis of MDS results. The most important thing to know about MDS is that no two people are the same and the statistics that you may read will not necessarily apply to your father. There are many treatment options out there today and people can live with MDS for a long time with a good quality of life.

If you haven't already done so, you should contact the Aplastic Anemia & MDS International Foundation and ask for their information packet on MDS. The Foundation has a wealth of information about the disease and current treatments options. Their specialists can answer a lot of questions.

Here at Marrowforums you will be able to hear first-hand how people cope with MDS--both from the patient side and from the caregiver side. You may even find people being treated at the same hospital or by the same doctor. Post your questions here and we will try to help.

Regards,
Ruth Cuadra

[dee]

thank you very much. Should we get a second opionion?? My brother thinks we should go to the Cancer Treatment Center. They told my dad he couldn't work. That is what he has done all his life. He worked part time seasonal before this condition. Why can't he hold a part time job? Thanks for all the info. dee

[Ruth Cuadra]

Hi, again, Dee.

It is always a good idea to get a second opinion, but you need to have in mind what you want to learn from consulting another doctor. It seems unlikely that your father's basic diagnosis would change as a result of someone else reviewing his test results. However, you might hear very different advice about treatment options and lifestyle recommendations, including whether he should work or not, from another doctor.

The decision to work or not can be a difficult one that must balance the patient's physical and mental health. If it is primarily your father's red cells that are affected by his MDS, he probably can't hurt himself by working. However, if his platelets are low then he needs to take extra precautions to avoid injury (even more than he normally would!). A low white count may make it unadvisable for him to be around groups of people, especially children, because he would be susceptible to infections.

Unless your father's physical health is incompatible with his job, it would probably be in his best interest to continue to work. No one should be sidelined from an active life any sooner than absolutely necessary. This is a topic that you and/or he should explore more with his doctor. Ask him/her to be specific about why they think he shouldn't work.

Where is your father being treated? Is the Cancer Treatment Center you referred to at the same hospital or somewhere else? Because MDS is a rare disease, it is important to try to find a doctor and/or a treatment center with experience treating it. You can find a list of U.S. Treatment Centers by State on our Medical Resources page -- or try our new Treatment Center Map.

Hope this helps.

Ruth

[dee]

My dad is being treated at Liberty Hospital. Dr. Jamie Rigdon Heartland Hematology/Oncology Associates is his doctor. Maybe we should see how he feels after his treatments that start tomorrow. My dad has low red and white blood cells. Should he drive himself for his treatments? He is starting vidaza and procit. Thanks for all your help!! dee

[Ruth Cuadra]

Dee,

I don't have any experience with Vidaza myself, but you can read what some others have said about what it's like to take this treatment in the forums (search for posts about "Vidaza" by clicking on the triangle next to word Search in the gray bar at the top of this page).

Vidaza is given in cycles so I think patients feel ok at first and get gradually weaker during the cycle. You'll probably have to see how it goes for your father but having someone with him until you know how he reacts is probably a good idea.

I see that you are in Missouri. When your father is ready, you might consider going to the Siteman Cancer
Center at the Washington University for a second opinion.

Let us know how it goes for your father.

Regards,
Ruth

[katherineann59]

Hi Dee,
I'm sorry to hear about your father's diagnosis. I am writing because I have been receiving monthly vidaza treatments since August of 2006. So far, the vidaza has been very helpful in improving my blood counts. MDS has affected my white, red, and platelet counts. I have had an iron infusion as well as monthly hemoglobulin infusisons. My treatment cycle consisted of 7 days of vidaza (2 shots per day) each month. I also would receive a shot of aeranesp and neulasta each month. As of November of 2007 I am now on a maintenance schedule for vidaza. My treatment now consists of 5 days of Vidaza shots every 6 weeks along with the additional shot of aeranesp and neulasta. I am younger than your dad, 48, but I still have been able to work. I get an occasional infection which has been sucessfully treated by antibiotics. I am able to drive myself to and from my treatments. I also am very cautious about my health. I try to get enough rest, exercise and eat healthy foods each day which I am sure has played a major role in being able to stay "healthy." Probably the best thing I do for myself is work at keeping my attitude positive. I have a job I enjoy (teaching), a new grandbaby, and am still able to do the other things I enjoy. I have made some minor adjustments to my lifestyle. I used to compete in running races and triathalons. I still exercise, but I no longer push myself in competition. Anymore, my satisfaction comes from being able to get out and exercise. I have learned to listen to my body. I take life a whole lot easier now than I have in the past. Your dad is blessed to have you on his side. Good luck to both of you. I am available if you have any other questions or concerns you might like to share.
Kathy

[dee]

Hi Katherineann
My dad started yesterday taking vidaza. He gets 3 shots in the stomach and procit once a week. So far side effects has been diarrhea. My family is uncertain that this is the treatment we need. We are so uninformed about MDS. Is MDS considered cancer or precancer? My dad is scared. I am going to contact The Leukemia & Lymphoma Society tomorrow. Thanks

[katherineann59]

Hi Dee,
It's good to find out as much information as you can, that's for sure. Just keep in mind that outcomes are so varied among individuals that the statistics probably don't apply to your dad. When I brought them up to my oncologist (the statistics for my degree of MDS was 2 years) she told me not to even look at what the statistics say. Part of her reasoning had to do with individual differnces in how the body reacts to the treatments while another part had to do with advances in treatment. Vidaza, a drug which has been very successful with many, many patients (myself included) has only been around for a couple of years. If and when that stops working, my oncologist has assured me that there are other options. It's better for me to not dwell on the statistics many of the articles talk about. When I do, I begin to get scared and feel sorry for myself. Instead, I try to do what I can, accept my limitations, and be thankful for each and every good day. I get the feeling that you are a very important source of support for you dad. Please remember to take care of yourself. It's got to be really hard on you accumulating all of this information (a lot of which is hard to take) and staying strong for your dad. If I can help in any way, please don't hesitate to ask.
Kathy

[dee]

Kayherineann,

You are right it is hard to find info and read the good and bad. I am trying to stay positive and my dad is great with it all better than I expected. I do have to remember to take care of myself and I have 3 children 19, 16, and 15 and my husband. Thanks so much for your support!!

[katherineann59]

Hi Dee,
Wow! You really have a lot on your plate right now. Please keep me posted about your dad. If I can help in any way, let me know. You both will be in my thoughts.
Kathy

[dee]

Katherineann
Thanks for your support. My 19 year old daughter is in college and studying to be a nurse. My dad is so proud of her. I hope the Vidaza works for my dad but I guess there will be other options for him if it doesn't. Just going one day at a time. Thanks again. dee

[dee]

My dad found out today vidaza and procrit are not working. What now? He has been doing vidaza for 2 mos and dr. says to do 2 more mos. Do I go somewhere else? Thought about Siteman Cancer Center in St. Louis or KU Medical Center. Kind of in a daze. My dad is depressed. Please help.

[Tom M]

Hi Dee.....sorry to hear about your dad having MDS. I was diagnosed in Oct 2006 at the age of 54. I had never heard of this disease either, but I did go for a second opinion at a cancer center, and the diagnosed was confirmed.

I did 4 cycles of Vidaza, with no improvement. Actually, my counts dropped considerably with very slow recovery. The next step was to give revlimid a try. At 10 mg a day, after 4 weeks my counts bottomed out and I ended up in the hospital for a few days with a 104F fever. Thirty days later I began revlimid once more a 5mg per day and have been transfusion free for 10 months. I went from 2 pints weekly to transfusion free. I will add that I changed my diet to a more healthy one, removed all alcohol from my diet because I was told that alcohol is toxic to bone marrow, starting taking shark liver oil and epicor daily, and began juicing a lot of veggies, and made sure I conserved my energy by getting plenty of rest.

I tell you this short bio of my disease to let you know that things can get better. What works for one person may not work for another. Vidaza has worked for some, but not for me. Others have not had good luck with revlimid, but for me, it has helped. Then there is iron overload to consider, if one is getting transfused. May sure your dad gets his iron levels checked. There are treatments for iron overload, too.

For me, on a personal note, my greatest change came when I returned to my faith. I offered up my burden to God. He has been my greatest comfort in this difficult time. I live life one day at a time now, and am appreciative of every day I go without a transfusion.