Decitabine treatment for MDS

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• August 20, 2007 at 3:43 am #19087
  Jackie Jr.

  Member

  Hello everyone,

  I am new to this site…I have had a rough 4 years. I went to MD Anderson Cancer Center in Houston for all of this treatment. I started with colorectral cancer. Chemo, Rad. and surgery….More Chemo….

  Then a spot showed up in my liver…More chemo, and surgery…Took out 2/3rds of liver….More chemo…..

  Had to stop chemo due to Platelets were hanging out at 50…

  This is around my 2-1/2 year mark..

  Bone Marrow test and MDS >.1 Blast

  Red Blood drops to around 8.

  Required blood and then went to MD Anderson to start treatments.

  I had night sweats and low grade fever…

  I started a Decitabine treatment 45 mg for an hour for 5 days and then 21 days off. Then repeat….I have been doing that for a year and a half….13 cycles….

  Now my platelets are hanging around 70-80..I have to be at 100 to get treatments.

  We have had to hold treatments for about 60 days now. I was suppose to stop treatments in April of 2008 anyway.

  I went in to complete remission after the first treatment…I just did a bone marrow test in the middle of July 2007 and everything came back normal. But in the last 3 weeks I have been having some low grade fevers again in the evenings….Mild night sweats, nothing like before… I get the chill’s and hot flashes all the time…. I have severe joint and muscle pain in the evenings and some days.

  I am looking for someone whom has been going though the Decitabine treatments. Also we are looking at if this does not work we will do a bone marrow transplant. I would like to talk to someone whom has been though this.

  I am a 39 year old man.. Colorectol Cancer at 34 and Liver cancer at 37 and Mds since.

  Yes all the doctors are dumbfounded about my age and the fact that I have not been exposed to any chemicals. Which they say is the cause of MDS or old age.

  I am a person that will not give up, I have 3 kids 16-girl 6-boy and 4-boy. Loving wife…

  I am a very upbeat person and I believe in the Lord about..

  I am concerned about the symptoms that I am having now…

  They have found 2 perfect match’s for me in the system. But they tell me the treatment will require me a stay in Houston for 4 months…That will suck….

  Thanks in advance for you information and thoughts…

  Bless all of you and keep up the fight.

  August 20, 2007 at 7:20 pm #19088
  jaxem

  Member

  hi, jack. welcome to the group. you’re mighty young to be strapped with this disease. i don’t understand the blast count of .1. usually it’s expressed in %. you don’t state the type of mds you have. is it RAEB since you talk about blasts? you’re at a great institution and so lucky as to have found a donor if you have to go that route. my wife needs to go umbilical cord tx with a month in the hospital and another 2-3 months near the institution who does the tx. takes longer for cords than MRD’s or MUD’s. hope the dacogen works for you.

  August 20, 2007 at 8:35 pm #19089
  Suzanne

  Member

  I believe what they call secondary MDS can be caused by chemotherapy for other cancers. You are at a treatment center with a great reputation for treating MDS

  August 21, 2007 at 2:43 pm #19090
  Jackie Jr.

  Member

  Sorry about the blast confusion the blast % is 1.
  as far as what type I beleive it is the type that has the -5q or -q5. They tell me it is the better one to have. It has the best chance of being fixed.

  Yes I am too young for the Colon cancer and now MDS…The doctors all want me because they want to find out why. Which is good due to I am getting the best of the best doctors.

  Quote:

  Originally posted by jaxem:
  hi, jack. welcome to the group. you’re mighty young to be strapped with this disease. i don’t understand the blast count of .1. usually it’s expressed in %. you don’t state the type of mds you have. is it RAEB since you talk about blasts? you’re at a great institution and so lucky as to have found a donor if you have to go that route. my wife needs to go umbilical cord tx with a month in the hospital and another 2-3 months near the institution who does the tx. takes longer for cords than MRD’s or MUD’s. hope the dacogen works for you.
  August 21, 2007 at 8:20 pm #19091
  jaxem

  Member

  the -5q is your chromosome deficiency. there is also another drug called revlimid that has worked well against -5q. there are different classes of mds that have been defined by various international boards such as the IPSS. i was just wondering if you knew which class of mds you were diagnosed.

  August 27, 2007 at 10:20 pm #19092
  Jackie Jr.

  Member

  No I don’t know which class I have..my counts keep going down…Platelets are down this morning to 43…from 53 last week….I think it is back….I should be heading back to Houston in a week or so if they keep droping. I know this feeling so I know it is back… I guess it is time for the BMT….

  Keep up the prayers for me and all of us…
  God can to wonders.

  August 28, 2007 at 2:36 pm #19093
  gj

  Member

  Hey Jack

  I too developed MDS as a secondary dx. I was dx with mantle cell lymphoma and did a autologous(using my own) stem cell transplant in 11/05.
  I believe the reason that MDA requires you to be around for 4 months is because, they want you around for 100 days post transplant, to monitor graft vs host and also engraftment of the stem cells and 100 days is the norm.
  The actual transplant usually runs about 21 days give or take. Usually you’re given a high dose chemo or in some cases radiation, that ia to try and clean up any residual disease. Then at DAY 0, you get the stem cells. After that your counts take a drop and eventually bottom out and then begin turning around and start rising. You then are released to recover. They monitor you closely since you have no immunity.
  That’s the short version of a SCT. If you have specific questions feel free to contact me and ask anything.
  Wishing you the best
  greg

  September 9, 2007 at 5:01 pm #19094
  jaxem

  Member

  greg
  i believe the chemo/radiation given prior to tx is to eliminate or minimize your existing stem cells depending if you are having a full or “mini” transplant so that the new stem cells can take over your body with minimal GVHD. you are severely compromised but do have some immunity in the form of Natural Killer Cells (NKC) which are still around your body.

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