New Diagnosis of MDS

[josey]

This is my first post, new to the forum. I was diagnosed in Jan with MDS and am looking for as much infomation as I can get. I have started 200mcg of Aranesp every other week, just had my 3rd dose. I am confused about which road to take with my illness. Both a BMT and medication Dacogen, Vidara, Revlimid have been suggested. I have lived with low counts most of my life due to having Aplastic Anemia as a child, but this is new and a result of the AA. Any information on the results of different treatments would be appreciated. Josey

[Zoe]

Hello Josey, and welcome! You will find many very knowlegeable and supportive people here. What do your counts look like? What type of MDS do you have? I just started Aranesp after being diagnosed in November, so I am fairly new to this also.

Zoe

[patti]

Josey,

Where in Oregon do you live? Did you have some form of chemo treatments for your AA? How you treat your MDS is somewhat dependent on what type you have, any blasts you might have, etc. Can you provide some of this information?

Patti

[josey]

Patti and Zoe, I live in Corvallis, I am not sure what type of MDS I have, it is affecting my platlet counts. As a result of the AA I have always had thrombocytopenia, but they are now between 10,000 and 15,000. My WBC is around 2.8, my hemoglobin is running between 8.3 and 8.7. There are still so many questions I forget to ask the doctor, as to type,severity ect. When I had AA 45 years ago there was not much known about it and I had experimental treatments with steroids and transfusins, I don’t know if they even had chemo back then. I thought I had beat it, but it is the reason for my MDS, damaged stem cells. I guess I was very lucky to have a doctor who used me as a guinea pig to help develop a treatment for AA. I have done some more reading since my first post and realize there is no simple answer just the continued pursuit for answers. Thanks for the replies I think I will be around this forum for a long time. Josy

[Neil]

Hi Josey,
Have a few thoughts for you to discuss with your doc.
As a rule patients who transform from AA to MDS have hypoplastic marrow. Chemo would be very risky since you do not want to damage the cells that are there. Docs look for ways to support or boost the existing cells.
Your WBC isn’t too bad, but the reds are low thus the Aranesp. Usually take 4-6 weeks to see an increase in RBC/HGB if it is going to work.
Were you ever treated with ATG or ALG when you were younger? They helped many AA patients and a very few MDS patients. The common denominator is hypoplastic marrow.
Do you have any symptoms? Would expect fatigue considering your HGB level. Any bruising? I also have a low platelet level. Was 8,000 yesterday, but no symptoms. Also take Aranesp.
Did your doc check your EPO and iron levelsbefore starting you on Aranesp? If EPO is low to normal Aranesp may help. If it is normal to high there is less chance of help. It needs iron to function. If iron is low a supplement might help.
A hematologist experienced in treating MDS is really essential! The more patients the doc has the better their understanding and the better the treatment.
Dacogen, Vidaza and revlimid have helped many, BUT there are a number of characteristics the patients had in common. If you dont fall into the right class with the right chromosomal defects the lower the chance for success. In most cases counts (particularly platelets) go down when starting these drugs—before they go up—if they go up. Have to think about how to support your cells during this “down” period.
A very necessary discussion for your doc.
Living a healthy lifestyle (aside from the MDS) can help. Exercise (as tolerated), diet and paying attention to the rest of your body is necessary. You want to minimize the effects MDS might have on the rest of your body. Think about vitamins, eat healthy foods, be pro-active with your dental hygene. Keep ahead of potential dental problems! They can cause downstream difficulties.
There is a lot you can do to support your body if you consider your overall health. I tend to avoid crowds, sit as far away from others at church,fly only when absolutely necessary. Recycled air in a plane can cause significant problems with those with low WBC ( particularly ANC).
Make a list of items to discuss when visiting your doc. It is so easy to forget some items when you have so much to cover, particularly at the beginning.
Learn as much as you can about MDS, particularly your class. I found it much easier to deal with as I picked up more and more information.
Think about it.

[Arlene]

Josey, my husband was dx w/ MDS Dec 05, but they thought at first it was AA. His platelets were extremely low, then his RBC followed, but his WBC always stayed a little low, but ok. Aranesp never worked. A Doctor out of City of Hope in Phx AZ started him on cyclosporin in 4/06 and he has had pretty much normal counts since. The doctor felt since he look so much like AA the cyclosprine may work.His chromosomes returned to normal also. There are so many types of MDS and so tx is kind of individual. Good luck. Arlene

[josey]

Neil and Arlene thanks for posting. Neil I had to write your questions down in order to remember to answer them all. Yes my iron and EPO was checked before starting Aranesp. I was 12 years old when I had the AA, no one told me much of anything, no one told me I could die from it, I just did as I was told, took medication, had transfusions ect ect. I have pretty much blocked out that part of my life, it was horrible, no one in my family thought I would survive I found out later. Since I have lived with low counts, mostly platlets most of my life, I think my body has adjusted to low counts. I tire out much faster now, and buising and bleeding have been my companions for so long, I havn’t noticed an increase. My doctor here refered me to OHSU in Portland for a consultation. The more I read the more I agree that I need someone who specializes in MDS, the doc in Portland was in favor of drug treatment, the doc here is thinking BMT. I don’t know if the Portland doc focused on drug therapy because I said I didn’t really want a BMT or if its becausse she feels its the best therapy. I will have to check with her. I started to ramble. I was treated with prednisone and testosterone for my AA. Massive doses plus antibiotics and transfusions. So I don’t know about ATG or ALG or if they were even around in the 1950’s. I was able to have two healthy children even with my low platlet counts. I must have a strong immune system since I have been healthy most of my life. Sorry this is so long, its just nice having someone to talk with that understands all of this. I need to get more answers from my doctor. Josy

[willie]

Josey Try to read as much as you can on this forum. There is probably efforts that you can do short of a BMT. I wish my wife’s doctor would have given her moe options in the near term. She given a life expectancy index of 3 1/2 years if not treated (with a BMT). She probably could have had 2 fairly decent years before trying the BMT. The Vidaza treatments were really wearing on her every 4 weeks though. Try calling the Seattle Cancer Care Alliance (SCCA) for a third opinion. They are close to you, a Center of Excellance and very responsive. Willie

[josey]

Willie thank you for the information and I am really sorry for your loss. Originally I felt that a BMT was the last resort if all else failed, I am back to thinking that way again. No words can express how much I appreciate you taking the time to respond to my post under the circumstances you have had to experience. Once again sorry for your loss. Josey

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