Uncertainty with MDS

[Rhonda]

My uncle was diagnosed with MDS in early February of this year. Previously he had been under the care of a Oncologist/Hematologistfor the past 6-8 years for anemia. Since the diagnosis he has been transfusion dependant 2-4 units monthly. The dr put him on Revlimid....after 2 months of treatment it wasn't working. He has just finished his 1st cycle of Vidaza and couldn't receive the 2nd cycle because of low white cells. I would appreciate any additional information anyone has with this disease. His report from the BMT was Refractory Cytopenia with Multilineage Dysplasia, although the dr. says it is more like RA. I want to learn more about this disease, the progression, and what to expect. Although the dr. answers my questions, I still feel pretty stupid!! I think this is progressing pretty fast.....Can someone help me? My mother passed away 5 years ago with Lung/Brain Cancer so my uncle is all I have. Any correspondence would be great!!

[Zoe's Life]

Rhonda,

Welcome to the group. I wish I could give you some answers. The truth is that MDS is so different in every patient. Does he have any chromosome abnormalities? Maybe it is not moving as fast as you think. Remember, he has been treated for anemia for 6-8 years. Which likely means he has had it for some time. How familiar with MDS is his hematologist? It is best to work with someone who knows the disease and its many faces. A Center of Excellence if there is one he can get to. Does he have excess blasts? Now I don't really know for sure, but I thought Viazda was used more for excess blasts (I could be wrong though). Was he ever on Aranesp or Procrit? Many people live quite some time with MDS.

I am fairly new to this also. I was diagnosed last November 5q- RA. I have been on Aranesp since February. It keeps my hgb in the 11 range.

I found all types of info by googling MDS, myelodysplastic syndrome, life expectency, etc.

Zoe

[Rhonda]

There are no Chromosone abnormalities. As for the "being treated" maybe I wasn't specific. He has been anemic for 6 - 8 years although he was not being treated with blood products/medication. He was just being watched. We just went to the Dr. yesterday, and again his white cells are low so no chemotherapy. He will get 2 units of blood today. It just seems like since February, it is a monthly thing to get blood. This scares me to death!! Although I am used to the appointments/treatment schedules (dealt with mom's cancer treatments) he is very impatient and thinks there should be immediate results.

I have also googled the items you suggested. The range is so broad.......3-6 months......3-5 years........I understand that the disease is specific to the person, but you would think that they would all get "together" and compare notes!!

His hematoligist is great!! She is trying to keep him from progressing to AML. I asked the Dr. about procrit.....he produces enough of that on his own. So that wouldn't help him.

Cancer/Leukemia is such a debilitating disease!! I will keep you in my prayers!! Please keep in touch as it is nice to have someone to talk to about the disease as my uncle doesn't want to talk about it in depth.

Thanks again for the reply......I appreciate it more than you know.....

Rhonda

[Linda]

My husband gets shots of Neupogen when his white count is low. He even had it during Vidaza treatment as well. Some get Neulasta. Has the doctor considered this?
Bob did well with Vidaza for about 10 months. He has been changed to Dacogen to try to get ready for a BMT. Now he has been receiving platelets, and 2 units of blood. He hasn't had to have these in over a year.

Here are some links that may help:

http://www.aplastic.org/aplastic/

http://cancer.caring4health.com/Acut...8_C311524.aspx

http://www.allaboutmds.com/corporate...upport%20Group

http://www.leukemia-lymphoma.org/att...1098115974.pdf

http://www.leukemia-lymphoma.org/att...1141419978.pdf

http://www.mds-foundation.org/pdf/6-...nthandbook.pdf

http://www.ib014a7519.f2s.com/rlb/My...siaArticle.htm

These are some that I have depended on. Hope this helps. This disease is very individualized. Everyone experiences different symptoms, and reacts differently to treatments. I hope this forum is some help to you as it has been for us. Your uncle is in our prayers.

[Zoe's Life]

Rhonda,

There are many factors that are considered when determining life expectency. Cytogenetic subgroups: Good, normal, del(5q) only, del(20q) only, -Y only; Intermediate, +8, single miscellaneous, double abnormalities; Poor, complex (ie, 3 anomalies) or chromosome 7 abnormalities. They also look at number of blasts, the number of cytopenias, age at diagnosis, and to a lesser degree, gender.

http://bloodjournal.hematologylibrar...full/89/6/2079

The Blood Journal, and author Greenburg have a lot of info on MDS.

I was slightly anemic for 2 years prior to my diagnosis, and I believe that was because of the MDS. Don't rule out the MDS prior to the actual diagnosis. Often, even after the actual diagnosis, the protocol is watch and wait.

http://www.lrf.org.uk/en/1/infdispatmye.html

http://arpa.allenpress.com/arpaonlin...29-10-1299-t01

http://www.questdiagnostics.com/kbas...0000062929.htm

http://www.vidaza.com/corporateweb/v...IPSSCalculator

http://theoncologist.alphamedpress.o...t/full/2/6/389

http://209.85.165.104/search?q=cache...s&ct=clnk&cd=2

http://www.asheducationbook.org/cgi/...ull/2002/1/136

http://www.allaboutmds.com/corporate...Content/Groups

These are some of the websites I have found helpful. Hope I got the links right for you.

Hang in there. Ask lots of questions. Feel free to vent. Ask different people the same questions. Recently my hemoglobin was dropping steadily (still in 11 range, but it went from 11.9-11.1). I was afraid it was the beginning of a slow downward trend. When I asked at the cancer clinic, all I heard was that as long as I stay in the 11 range it is good. It didn't help--I didn't ask the question well enough I think. When I asked the chemo nurse at the local hospital she told me it is normal to fluctuate like that and it doesn't mean a downward trend. It could easily be back up at my next lab. That gave me peace of mind. I understand that some folks have lived for 18 years transfusion dependent. It does cause new complications--they take time, after so many you have to look at iron overload, etc.--but transfusions alone do not signal the end is near. Take it one day at a time, and enjoy life and help your uncle do the same. Praying for you and your uncle also.

Zoe

[Neil Cuadra]

Originally Posted by Zoe's Life

http://209.85.165.104/search?q=cache...s&ct=clnk&cd=2

Here is a possibly more-reliable link for that same report at the MDS Foundation website:

Emerging Treatment Options for Adult MDS.pdf (112K PDF file)

There are tips about downloading and viewing PDF files in the Reading PDF files thread.