first time here, my dad has MDS- how to cope?

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• February 10, 2005 at 9:17 am #4048
  txnmomma

  Member

  This is my firs time here.. I am really just needing to know some info about MDS. My dad was diagnosed with MDS in July 2004. This is all knew to me and my family.

  Also, I came here to learn/ meet other people with the same problem.

  Kinda feel like this is all new to me and trying to help my dad cope with MDS

  February 10, 2005 at 1:24 pm #4049
  sarah

  Member

  Hi sorry to hear about your dad, but welcome to forum. What is your dads age and classification? Is he seeing a hematologist who specializes in MDS? As you continue to research you will get a better understanding about MDS. This disease affects everyone so differently.
  Sarah

  February 10, 2005 at 2:03 pm #4050
  Terri

  Member

  You will find a lot of information here and tons of support. We welcome you. This disease affects everyone so differently and so are the treatments. you might just want to browse some of the post.
  If you post a questions I am sure someone on here will respond. It has helped me so. My husband was dx in August 03

  February 10, 2005 at 2:14 pm #4051
  Suzanne

  Member

  Wendy, Has your Dad been to a Center Of Excellence for a consultaion and treatment options.If not he should as quickly as possible. If he is in Texas also, MD Anderson is very well known.There is a list of centers on this site. Most local Hemo’s have not seen enough of these cases to keep up with the latest developments. The type of MDS he has, his age and physical condition will have a lot to do with what is recommended. Even tho there is no denying that this disease is scary for patient and family, it often gets less so when you know more about your particular situation. Many of us have lived comfortably well beyond what we were told on our initial diagnosis.

  February 10, 2005 at 4:44 pm #4052
  shirlsgirl

  Member

  Hi Wendy,

  Sarah, Terri and Suzanne have given you some great advice…I just want to say Hi and welcome.
  How are your dad’s counts? I think Danazol is used for increasing platelets. (sorry though, my mom has no experience with this drug.)

  Jody

  February 10, 2005 at 6:20 pm #4053
  txnmomma

  Member

  Thanks everyone for the welcome!!

  Sarah.. my dad is 55yo. Not sure about the classification- you mean the classification of MDS. That’s what I am not sure about. What is the classif.? Help..LOL His was dx’ed with really bad anemia after neck surgery in 2001. He also has DVT.

  His hematologist doesn’t specialize in MDS-just a reg. hematologist. This dr dx’ed the MDS thru a bone marrow test last yr. But after reading some posts here- I think I will encourage him to see a hematologist who specializes in it OR.. I will flat out talk to his hematol. and tell him- I am wanting to see about a one with the special.

  Jody.. his counts are about 1-2’s.. on everything.. his WBC, RBC, HGB.. really really low. But this is what I cant find. DO you know the normal ranges of the WBC, RBC, HGB??

  Oh and he has had a blood transfusion [2 pints]. This DID help ALOT for a few days- counts went upa little- he got some color back into his face b/c was SOOO VERY pale before this. He will prob be needing another tranfus. soon.

  Oh, forgot to add this- he was Thalidomide for a short time and responded to it, but the side effects for HIM were just horrible. SO he is off it.

  Also got a plasma tranfus from his blood being TOO thin. He is on coumadin.. and his PT/INR was really HIGH- his blood was like water.

  February 10, 2005 at 9:38 pm #4054
  txnmomma

  Member

  Quote:

  Has your Dad been to a Center Of Excellence for a consultaion and treatment options.

  Honestly, I am not sure exactly what his options are or what the Center of Excellence is.

  I am this new to MDS and totally clueless

  February 10, 2005 at 9:52 pm #4055
  Donna

  Member

  Hi Wendy. You’ve come to the right place. If you go to the home page of this site there will be a link there — scroll through and see which centre is closest to you.
  It’s a good idea to speak to your dad’s dr and get a referral to a mds specialist, someone who deals specifically with mds. Also, you really should know what classification/type of mds your dad is dealing with.
  They are all different — some forms more aggresive than others, and each require their own specific form of treatment. My mom did not see a mds specialist she chose to seek treatment from a hemotologist, her decision. That being said — it is up to your dad, if he wishes to see a specialist or not. You have to respect what he wants to do.
  It’s very scary at first — lots of unknowns to deal with, with knowledge comes power. Will you dad let you go with him to the dr and ask the questions?

  Take care,
  Donna

  February 10, 2005 at 10:32 pm #4056
  txnmomma

  Member

  Donna.. Ok- I learning so much about this.

  The closest COE is in HOuston. MD Anderson. His limitation is his ins and it being covered…BUT at the same time. He doesnt have alot of $$ to just go to Houston for at least a consult. I am encouraging him to go no matter what.

  As far as classification, he doesnt know what it is yet. He will be talking to his hemtalog at the next appt. He is “all for” looking into a MDS specialist.

  In some weird way, I am really researching as much as I can about this and really getting onto [in a loving way] him about taking a more Active approach to this.

  So the next step is..for me- I am going to call the MD Anderson.

  His RBC was 2.3, White was 2, HGB was 13
  The crit was ok and I cant remember the plate count.

  February 10, 2005 at 10:34 pm #4057
  txnmomma

  Member

  Donna.. in your siggy it says..
  reg, tx

  what does that mean?

  Did your mom have blood transfusions?

  February 10, 2005 at 11:55 pm #4058
  Suzanne

  Member

  I did not have trouble with my insurance paying for the center of Excellence.John’s Hopkins was listed as a participant in my plan. It did come under a rider for specilaists. My appointments, labs and treatment have all been covered. If he has limited $’s and is not covered he may qualify fot medicaid.The hospital patient services office should help with that. Also I believe the AA & MDS International foundation has some travel money available for those that qualify for help. 800-747-1336. He is young so you might also start the process of applying for social security disability for him. But seeing a specialist (and most of those are at the centers of Excellence where they are envolved in research on MDS) is what, in my opinion, is the most important first step.
  The Dr. your Dad is seeing should be able to give you normal ranges for counts. a chart I have says WBC 4500-11000, Rbc 4-5.20 Hematocrit or Packed cell vol 36-46, Platelets 150-350,Neutrophils 1500-7800. I believe there is a slight difference between the norms for male and female. One of the past posts gives you a link to understanding counts. You may find info using the search button on the top of this page.

  February 11, 2005 at 1:03 am #4059
  Donna

  Member

  yes – mom received regular transfusions, that was all that her hemotologist offered her in the way of treatment.

  Donna

  February 11, 2005 at 6:24 am #4060
  txnmomma

  Member

  Donna.. WOW! This seems to be all my dad’s dr is offering him. *shrug*

  It’s frustrating, b/c I wish he would do more for my dad, this makes me want to find a MDS specialist.

  February 11, 2005 at 10:06 pm #4061
  alexandra7

  Participant

  Hy Wendy!!!
  I would say Welcome to the forum but it would have been better if you never found out what MDS means . Here you will find people who are in the same situation and also people who know so much about MDS . I personally do not know very much as others. You can find many materials on the net . Just try googling on this . I can tell you that you need to get your father to an MDS specialist or a very good hematologist . It took a long time for me to understand what MDS is and when I did understand I ended up being terrified . The forum helped me understand that not everything you read is true . MDS is very strange . For some people it evolves very fast fot others it doesn’t. The first thing I learned here was that a treatment that works for a pesrson may not work or may make the situation even worse for another one . That is why seeing a good hematologist is important. Alexa

  February 12, 2005 at 12:29 am #4062
  Donna

  Member

  Hi Wendy, That’s why it’s so important to get to a specialist. I don’t know for sure if a specialist would’ve offered mom more — that’s something we’ll never know.
  I really wanted her to see a specialist but she really didn’t want to, she was very comfortable with her Dr. We had to respect that and support her decisions. Mom’s MDS was very aggresive, everything happened very fast. Please don’t think this is going to happen to your dad, everyone is very different.

  Donna

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