Mother Just Diagnosed

[Suzanne]

My name is Suzanne and my 66 year old mother was just diagnosed with MDS. She had follicular lymphoma 4 years ago and was very lucky in beating that with just radiation. She see her hem/onc every 3 months to monitor the lymphoma. The MDS was found after a blood test where her hemoglobin was at 9. They did some blood work and a bone marrow biopsy. He was pretty evasive and told us not to worry about it, that she was a very mild form of the disease with no chromosome abnormalities. I don't have all the particulars that eveyone lists on here, when she goes for a follow up on May 8th I will get copies. My mother really doesn't think she has anything wrong with her of concern, and I think we will leave it that way for a little while. Like I said, the doctor made it sound like it wasn't a big deal. I guess what has me so depressed is what I am seeing about median survival with this disease. Is it really 4 years at best? If you have a mild form of MDs does it eventually convert to a more aggressive form? I feel so helpless with this. Thank you for listening!

[Joan]

Dear Suzanne;

Sorry to hear of your mother's recent diagnosis but as you have time to read more of the posts, you will read of people who have had MDS for more than 4 years. The average for my husband's MDS-RCMD was 2.4 years but he has just about beat that. You have to remember that with averages some people unfortunately die earlier but by the same token some live longer. No one is "average" in terms of statistics.

Keep reading. Get the numbers but don't be discouraged. Good luck to your mother.

Joan

[mannythedog]

Suzanne,
I am so sorry to hear about your mom. She has already had a fight that she has won, and now in for another round. My mother had breast cancer in 1981, and had new types of treatments, the standard today, she is now 73.

My father was originally diagnosed with MDS back in September of 07, but further diagnostics showed he had leukemia. He has been on chemo and other meds since then, and the doctor stated that there was no return. Only management. He only expected pop to live through Christmas... well the ol' guy is still here.

The doctor was surprised to see him in January and March. Pop is now on the down swing; however, because of his health and exercises prior to getting sick, it has given him more "staying power". No pun intended. At 75 years old, he was in better shape than many 30 year olds. He now 76. The doctor stated that if he had MDS he could have, most likely, due to his physical health at the time, managed it for 7 to 10 years.

You never know. I have read many posts of people that have been managing MDS for up to 10 years, so NEVER go by the average. It depends on many factors, and if your mom is a stubborn, crusty ol' codger like my dad, than she'll do just fine. Please read my post's if you get a chance. You may just get an idea what I am talking about.

Good luck and God bless.

Scott
Son Of Bob