New and confused…

[PamJ]

Hi Everyone –
I’m so glad to have found your forum. My dad, age 80, was just diagnosed with MDS today. He has actually been bruising, fatigued, short of breath for several years, but his MD acted as though it was normal. To make a long story short, dad’s NEW MD sent him to a hematologist who did a BMB in January and has been doing blood tests monthly ever since. He said after 4 months, he would see us….and that was today…phewwww.

Dad’s platelets are at 49 and WBC at 3.0…and he’s just so darned weak. This hematologist said it was MDS (why did it take so long to figure out?)…and is sending dad for CT scan of liver and spleen tomorrow. He said chemotherapy would be the only option and he would see us in 2 more weeks to discuss whether chemo would be worth the sickness he’d go through….??

I’m so confused, because I see everyone here seems to know what stage their MDS is in…and out doctor told us nothing more than I’m telling you….is this unusual? And if chemo is the only option, would it be worth going through being sick?

I’m sorry to ramble so…. but I’d love to have your thoughts!

Pam

WBC 3.0 / GRAN 1.8 / RBC 4.7 / HGB 12.0 / HCT36.8% / RDW 23.1% / PLT 49

[doreen]

Pam – The doctor should know what type of MDS from the bone marrow biopsy. I would be insistant on what they found and if there are blasts in his bone marrow. I talked to a 70 year old the other day while I was getting a tranfusion who said he opted not to get chemo because of his age. It takes alot out of a person – instead he continues to get transfusions when needed. 3.0 is not that low for white. The platelets and hemoglobin can be transfused. I am not a doctor but keep asking questions of them until you get the answers. Best of luck to you and your father. I know that it it not easy, but keep your chin up.

[eve]

pam

maybe the chemo the doctor is talking about is vidaza which is a mild form of chemo – the side effects are much more tolerable than most

good luck

eve

[Terri]

Pam, Definately ask if he is talking about vidaza, much easier then the heavy Chemo if it works.

[Suzanne]

Pam, find out what type of MDS your father has and what risk level. Some types are easier to deal with then others. Then get an appointment at a center of excellence for a second opinion and treatment alternatives. Only a place that does research will have access to trial medications.I have known of people in their 70’s that did well with induction and consolidation -the 2 heavy chemo rounds- a lot will depend on his physical condition and any other problems he might have.
There are other alternatives but they often do better with certain types of MDS, certain genetic factors or chromosome changes -another reason to get advice fom a place that does research and treats a lot of MDS and AML patients.Most local hemos seldom see it and know very little if anything about recent developments in treatments. Vidaza has been mentioned and another one is Zarnestra that has been submitted for approval as a chemo for older patients like you father that the reg chemo might too hard for.

[PamJ]

Thank you guys so much! I will find out what type of chemo he is talking about and also what dad’s risk level is! I don’t believe there is a Center of Excellence in Tennessee and I don’t think dad can travel at this time – he just gets so short of breath now days. But I will definitely get more answers from his hemo here! Thanks again everyone!

[Marsha]

Pam,

You can also request a copy of your dad’s records which would include the BMB report. I get copies of my counts each time and all other reports just for my own peice of mind.

I don’t know about Vanderbuilt. I think that is in Tennessee I have heard good things, tho don’t know if they are a COE for MDS.

My prayers are with you and your dad as you go thru this very stressful time.

God bless, Marsha

[Carl]

PamJ,

You definately need to get your Father an appointment at Vanderbilt Cancer Center to see someone with MDS experience. I have provided a link to their Hematology and Oncology web site that has telephone numbers and Dr. names. It may take a few weeks to get in, but it is worth the trip. Good Luck.

http://www.mc.vanderbilt.edu/vicc/showcontent.php?id=77&noRandImg=true

[Josie]

Hi Pam,
My Mom has MDS found out in Jan 05. What I have been doing is research, finding out everything I can about MDS. I am her support center. I am here for her what ever she needs. I inform her of all information I find. What she does is consintrate on getting better, get rest, exersize, and stay stress free.
Find a experienced MD who has treated others with MDS. Everyone here will help you. Neil is wonderful. I’m sure he will post.
good luck
e-mail me if you want bmorello@adelphia.net

[Author]

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