Newly diagnosed with MDS

[Warren]

I’m sure this is the right place….I have been recently diagnosed with MDS at the age of 40. Needless to say I have MANY concerns, fears! My type is RAEB-1 excess blasts….I have done a bunch of on-line research. So what I really want to know is generally what is the prognosis for this type? How long can I expect to function? My oncologist has reffered my to the Moffit Cancer Center in Tampa, are they the BEST? I love my life and am not prepared to die anytime soon, but what I have heard the odds are not great….
Can anyone give me any insight as to the odds of BMT survival vs quality of life vs no BMT and going on with just supportive treatment? Any input would be appreciated……

Warren

[JulesH]

Warren

As far as I’m concerned, Moffitt is the best. If there are any new treatments available, they are aware of them. I felt I had about 2 to 4 months left to live about 18 months ago and today I just came in off the golf course after 18 holes of golf. I am planning things 2 and 3 years down the line with no doubt that I will still be around.

I am on supportive treatments of VIDAZA with very few side affects.

JulesH

[Jerry]

Warren,

Take a deep breath and try to relax. I am fairly new to this forum but I can tell you there are some very knowledgable people on here. Most of us have (or had) the same fears and lack of knowledge that you have. For myself, I just had an appointment at Cleveland Clinic yesterday and my doctor told me how good Dr. List and the group at Moffit are. So that is a big postive for you. My suggestion is to take some time and read previous posts here and to follow the links on the home page here: https://www.mds-foundation.org/ and then go to the Moffit site and see what you can learn. If a BMT is in your future, it could be very positive for you. For me, I am too old (61) and with my kidney disease, I would not survive it. So it is not even a consideration for me. So, I try to live each and every day to the fullest and enjoy my friends and family. I fully intend to be here 10 years from now to irritate them all. A final but important thought. New medicines and treatments are being discovered and tried almost monthly in the MDS world. So, as Jim Valvano said, “Never give up, never, ever give up”. Good luck to you.

[Neil]

Hi Warren,
Wiuld highly recommend Dr Alan List at Moffitt. He is one of the best docs you can speak to.
The prognosis for those with RAEB-1 is seriuos. Dr List can provide you with the best options available at this time.
If you have any siblings a bone marrow transplant or a stem cell transplant might be an option. They are the only options for a cure at this time.
If you do not have siblings it is a possibility an unrelated donor can be found. Your age is a huge plus with either option.
The NIH (National Institutes for Health) is another possibility. Dr Richard Childs at the NIH has had some good success with unrelated donors.
M D Anderson in Houston, Fred Hutchinson in Seattle, Johns Hopkins, Baltimore Sloan Kettering in N Y are some others that you can find more info on various options. Considering you are in Orlando, Moffitt would be a great place to start.
One thing to remember is all MDS patients are different. We react differently to the disease and differently to treatment. What works for one may or may not work for another.
Would keep track of your cell counts and your blast level. I put mine on an Excel spreadsheet to be aware of long term trends.
One of the questions you want to have answered is what they plan to do about reducing your blast level and how to make certain your blasts do not get into your peripheral blood.
Be certain you go to the home page for this site. There is a column on the left side of the page. Browse through the different subjects, particularly that on patient education. Tons of info that will trigger questions for your doc and get you up to speed as quickly as possible.
At this stage it is very important that you locate a hematologist that is experienced in treating MDS particularly RAEB. The more MDS patients he/she has the better. Dr List can provide you with much of the most current info, but you should have a local hemo that will confer with List and handle your immediate needs. A GP or Internist will not be qualified to to provide all of the options. An experienced hemo is a must!!!!
As a rule MDS patients produce many many more cells that normal people. Unfortunately most of these cells are abnormal and are killed off throuogh the bodies normal process. They are identified, killed and discarded. Those cells are cloning and produce the abnormal red, white cells and platelets. They will do all they can to cultivate and protect the normal cells that are left and functioning. They may try to eliminate those cells that are abnormal/cloning, but this is where risk enters the equation. You want to be dealing with those docs that have had the best results in getting rid of the abnormal cells and have been successful in building healthy cells.
There are other options for those who cannot have a transplant. Transfusions and various drugs help one deal with the disease.
Enough for now. There is a lot of reading necessary to get up to speed. Many new terms—a new language to learn. There are many great people on this site that will share their experiences and will help answer you questions.

[Caroline]

Warren,

I am sorry to hear that you have MDS. It sure is scary, especially in the beginning when you are not yet educated about the disease. The people in this forum are absolutely wonderful. They have been a wealth of information to me. Whenever I have a question, I get lots of input and I then have lots of questions and options to arm myself with when I take my Dad to his doctor visits. You will learn lots of ideas for complimenting any treatments that your medical doctors are already administering regarding diet and supplements. Like I said, these folks are great and are always ready to lend a hand.

Before I posted any questions, I started at the beginning and took a couple of evenings to read..read..and read some more until I had read all of the entries in this forum. It helped to know that there are many people out there who are beating the odds. You start to view this forum as a safe place where you can ask anything and get honest answers from people who care.

I can’t give you any advice myself because I am still learning too. I only joined last month. We are all still learning together.

My thoughts and prayers are with you Warren.

Caroline

[Suzanne]

Warren, Having been there I sure know how you must be feeling. You have a lot going for you. Your young age which makes transplant something you can seriously consider and the ablilty to look for a unrelated match if you need one a possibility .
Moffit and Dr. List have a great reputation. You are getting to a center of excellence right away which is the right thing to do. There has also been a lot of progress in treating this disease and in the success rate of both drugs and transplants in the couple of years or so.
A transplant was not a option for me and I had reservations about that direction even if it had been an option.(maybe it was a good thing that the decision was taken out of my hands when I did not have a sibling match) My disease progressed to AML and so far the treatments that were recommended at my center of excellence have given me years of good quality living. It has been almost three years since the diagnosis came “out of the blue” of my high risk RAEB with the prognosis of probably 6 months to a year to live-put your affairs in order. There are guite a few of us still here that heard that at one time and of course some that aren’t with no way to predict which way things will go for any individual. I have been in full remission for almost 2 years –so have hope. Great that you are close to a center. I have actually not seen my local hemo-who was knowledgable about MDS- since treatment was started at Johns Hopkins-where he sent me- with my first trial med. I am just a little over 30 miles from Hopkins and have been there for everything except an ear ache. They are just now turning me loose and sending me to my primary physician to get my colesterol looked at and a routine physical with strict instructions “not to mess with my blood counts” I take as a wonderful sign that we can now look at general preventive care for long term health.
Learn all you can. Find a doctor or team of doctors that have access to the new advances that aren’t necessarily approved yet, and that also explain all the options and that you trust. Keep feeling positive, take good care of yourself-healthy diet, exercise and plenty of sleep. You will have lots of decisions to make ahead of you. Call the AA & MDS International Foundation and ask that they mail you their informaion package on MDS 1-800-747-2820. If I can answer any questions or help I will be glad to. Good luck to you. Keep us informed as we all learn from each others experiences and information gathering.

[patti]

Warren,

You are in the right spot. And you’ve already received some great information. I’ll just share with you that my MIL (she’s 75) was DX with RAEB-t in Aug. of 04. She was told she had 4-6 months because she was already borderline leukemia. It’s been more than a year now and she’s still doing fairly well. The only treatment she’s taken is neupogen for white cells, procrit and aranesp (neither worked) and transfusions for supportive care. She takes a list a mile long of supplements and vitamins. She juices and does an all natural diet. I believe that’s why she’s still here. Your age is a huge positive factor. My MIL really doesn’t have the treatment options open to her that you do. Whatever medical treatment you decide to do, I would encourage you to get some nutritional counseling on the side. If your body is as physically healthy as you can get it then you will be able to handle medical treatments much better. I just found out a hospital here has a naturopathic and medicinal clinic where the doctors and naturopaths work together to coordinate a persons care. If you could find that at Moffitt that would be a great combonation for getting you back to good health. Take heart, there is hope.

Patti

[Dennis]

Warren,

I was just dx’d last August at the age of 52. My biopsy reads like it came from the Roswell Autopsy, with all the chromosomal abnormalities.

My hemo put me on Vidaza — just finished the 3rd round of it. Counts are all approaching the low end of normal, and it’s been 5 weeks since a transfusion.

We’re going for the Bone Marrow Transplant, and am in a donor search now. Given the chromosomal problems, they figure a transplant is almost certainly in my future, so we’ll do it now. If you look into it, don’t let the statistical info scare you — remember, 5 year survival rates are based on transplants done in the late 90’s, and there have been many, many improvements since then.

Dennis

[diner]

Warren,
I’m also sorry to hear about your MDS. When I first was dx with it, I was so scared and looked up everything I could find on the internet which helped but gave me tension neck and headaches. I am 62 and have been through 10 years of fighting Non-Hodkins lymphoma and 2 yrs. ago got MDS from all the treatment I had. I am trying to take one day at a time now. I am a lot older than you, but don’t feel more than 40 unless I’m having a bad day. I am trying a new treatment (Vidaza) in hopes it will help. Keep you faith up and take a day at a time. The people on this site are great for advise too.
Dee

[Walden’s wife]

Dear Warren, of course this is such a scary time for you. Everyone’s advice so far has been right on target. One point I need to make is that you should never consider ANY symptom too trivial to mention to the doctor. Every tiny detail that may be an infection can be serious. Marie

[sarah]

Welcome to forum Warren, you have been given wonderful advice. Keep us updated. Remember take things one day at a time.

[Sandy L]

Dear Warren

Welcome to this forum. There is so much knowledge here and always people that care. Stay strong and focused. Knowledge will help you decide what is best for you.

[Sandy M]

Warren,
My name is Sandy and I want you to know that I echo the welcomes before me, There are all types of experienced people in this group of all ages and experiences, some sucsessful and some not , but all in all, theres a wealth of knowledge you can gain from us…
try to sit back and take a deep breath and read away, but don’t try to soak it in all at once, it can get very overwelming at times.
good luck and never stop asking questions, knowledge is power

[Jimbob]

Warren,
Sorry you had to look but glad you found this forum. Most of the information you can find easily from other sites is likely to give you a pretty poor outlook because most of what is out there is so outdated. Here you are getting access to the most current information possible because, not only of the research people here have already done, most of the people here are doing what they can do beat the various forms of this disease as patients or caregivers. They have to keep up on what is most current and are very willing to share what they have learned.
Personally, I believe that your age is a big point in your favor. Next, you have been refered to Moffit and Dr. List. In your situation, I would get all the info I could from the medical doctors and let them begin the search for a donor, just in case. While they are doing that, though, I would work with alternative/complimentary caregivers to get my body in better condition to fight off this and all other disease. A naturapathic and nutritionist that has worked successfully with MDS or cancer patients is a good place to start. Clean out the body and start fueling it with the best foods possible to beat your type of illness.
Unfortuntley, MDS and the treatments for it do not work the same in every person, but there are enough similarities to make comparisons. Whatever you choose to do is somehting you have to decide after gathering and sorting through all of the information. WE hope and pray that you will become a good source of information for many in the long term future.
Jim

[Sandy L]

Hi Warren,

I can’t add anything at this time but I did want to say hello. It does sound like you have a fighting chance. Your age will work for you and the knowledge you get from your Forum Friends will help. Look forward to your posts.

[Author]

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