I need help, My Dad has been diagnosed with MDS Unspecified

[Deborah]

Hello,

My Dad is 88 years old and for months has been feeling weak and out of breath, significant weight loss, bruising easily and is very depressed. He is not your typical "old" guy..he still works full time and used to lead an active life...until recently. I just reviewed the Dr. Dx and is is MDS unspecified.

He has been through every test known to man, and is healthy otherwise. He was just started on a regime of Epogen injections once a week for 5 weeks. When he went for his 2nd injection, his blood count dropped from 10.4 to 9.4.

I do not know blast % and his hematologist doesn't explain anything to my Dad . All my Dad knows is he is anemic and these injections are going to "fix" it.

I want to do everything I can to improve his quality of life and need help as to how to be more involved...he does not want me to go to the Dr. with him..

He is my world.....and I have been doing research and reading all I can.....
Should he get a transfusion now, should he keep up with the injections, Shark Liver oil...etc...

I just feel so powerless while my best friend is withering away.......help please!!!!

[Neil Cuadra]

Hi Deborah. I'm sorry to hear about your dad. You are clearly a very dedicated daughter and for that he's very lucky.

With MDS there is frequently a tradeoff between quantity of life and quality of life. The most aggressive treatments are harder on the body and less appropriate for patients at age 88, but your dad's active lifestyle is a strong incentive to try to manage his MDS and get his blood counts in range, so he can return to as much activity as possible. The more you learn and understand about MDS and the treatments for it, the more you can help your dad and his doctor make the best choices.

You can learn how some patients and families cope with MDS here at Marrowforums. I have two other suggestions for getting more information:

One is to contact the Aplastic Anemia & MDS Internaional Foundation. They can give you information about MDS and send you an excellent information packet. They can also steer you to other resources. You can go to their website, call them at 800-747-2820, or email them at help@aamds.org.

The second is to ask your dad to reconsider letting you go to his next appointment. Explain that not only can you help listen and ask questions but that you will feel better, given how worried you are about him. If he will do that for you, great!

If he still doesn't want you to go to his appointments, ask if he'd give you permission to talk to the doctor separately. Some doctors require a signed release to talk to family members (patient's rights), and that's reasonable. If your dad says OK, arrange to talk to the doctor on the phone (or by email) or arrange your own appointment with him/her.

[ann]

Deborah, I hope that your father has consented to you going with him to the doctor. Four ears are better than two! How old is your father and does he have any other medical condiitons that will cause him to feel bad? Our hemotologist/oncologist, Dr. Mansoor is a wonderful, kind doctor. She insisted that we get a second opinion and we did. I also consulted with a
personal friend who is a physician in NYC. He feels that the Vidaza treatments along with the Procrit shots and transfusions as needed are the best treatment for the stage 2 MDS that my husband was diagnosed with.
He has congestive heart disease and COPD and is on oxygen all the time.
He is coping with this disease admirably. I am so thankful that we have time to do things together and to see friends that he had not seen in years. Praying for remission.
God bless you and your Dad.
ann

[mawad]

Hi Debora,

I feel for you at this point. I am going through the same situation as yours. My mom who is 79 yo and my best friend in life has been diagnosed with MDS. The diagnoses was official in April of this year but I believe my mom has had this illness since at least 2006 and was hospitalized several times for her congestive heart failure and were never told she had the disease. Now that I undersatnd the disease more I can tell you that when she was living with me 2006 and 2007, she lost a lot of weight and was tired and depressed and had nose bleed but they thought it was because she was on blood thinner at that time for her heart condition. She had 9 blood transfusion earlier this year and started on Epoe in Feb of this year. So far she is doing great and her HB is 11+. The only thing is that she recently had a blood clot in here leg and was hospitalized for it and treated.

I understand what you are going through. It is even harder for me because my mom lives currenly overseas and can only talk to her on the phone.

I really hope your dad is doing good and his health is improving. Please keep in touch with me and let me know what goes on. Our parents are in same age group and it is helpful to what each of us is doing to help them.

My mom is coming to the state in a month or two. I am very excited to be able to spend some time with her.

Take care,


Mona

[BURT]

I am sorry that your dad is in this situation .My father is also currently at war with mds. There is alot of good people sharing good info on this forrum.My father is also going thru depression from going thru so much,one thing the doctor started him on that changed my dad over night was an antidepresent.It gave my dad a new stength and hope to fight,above all it made him more comfortable.I will prey for you and your family,keep up the fight.