My dad has MDS ( I am new here )

[kerrylai]

My dad has CLL since 2003. Then, he got the treatment from UCSF. First, Dr. give him a durg called ” chlorambucil”, he tried few times without response, then, Dr. tried Fludara and Rituxin. After everything goes fine.Dr. said it can keep for 3 years, my dad just has to faxed blood test report to him every 3 months to update his situation. Then, My dad return to his hometown ( Taiwan ), month later, my dad have blood test in Taiwan and found out his WBC drop to 600. He back to here and bone marrow check, and find out- MDS in it.
We do not know how many % in his born marrow yet. I
am so scare. English is my second language, and medical term is even second language of second languge. The dr. told me if MDS get bad, my dad only has 6 month. – my heart is almost broken…
I try to search everything I could. I found out, there is new medicine called Revlimid ? does any one take this before… I also try to make another appointment in Standford with Dr. Peter Greenberg. Does anyone be treated with him ?
Other than that, I also find, there is mini-translation which is good for elder people ( my dad is 72 ), does anyone done this beofore.

I cried for few days, I do not know what to do ?
If anyone know anything about my question as above, pls let me know.

thank you so much

[tahoedonner]

Dr. Greenberg at Stanford is considered one of the best experts re MDS in the world.

Hope that you can connect with him!

[kerrylai]

Thank you for your infomation. At least, I know my dad can get the best doctor for his treatment.

kerry

[Suzanne]

Don’t totally panic yet.All of us felt the same way you do when we were first diagnosed. There are new treatments with signs of success. A lot has happened in just the past couple of years. I do know a patient at Hopkins that had a successful mini transplant from a matched related donor and many of us have lived a lot longer that had the same scary forcast of remaining life time. Sounds like you are sending your Dad to a great place for the best care. Good luck.

[kerrylai]

Hi, Suzanne:
Thank you for your encourage. I will try to keep update with all of you. Thank you for provided the information. May Lord bless you.

kerry

[Terri]

Kerrylai, Like Suzanne said Don’t panic, I think we have all been and felt like you do when here of the diagnosis for the first time. Bob was diagnosed almost two years ago and He is doing good. His counts are holding their own and the blast are under control. Suzanne is an excellent case of Hope she has done so well.
There are a lot of people here for support.

God Bless

[kerrylai]

Terri:
Thank you so much for your support. I will keeping contact with all of you. It make me less panic now.
tks

kerry

[hmblume]

Kerry,
Have faith and keep hoping!!
Peter Greenberg at Stanford is a recognized expert in this field, and a caring person; I also have high confidence in his associate director, Dr. Gotlib. Stanford did the bone marrow biopsy for my hematologist.
There is a local MDS support group, next meeting Sun Aug 14, 2 PM in Oakland. If talking is easier English communication than writing, this may be of interest. We will discuss what we learn at the AAMDSI meeting in Denver.
For me, Vidaza is a suggested future MED. Many have transfusions, with some MEDs to counter iron buildup. Thalidomide has been mentioned in this forum and in my group. I believe that Revlimid has a close relationship to Thalidomide, and was expected to alleviate and defer symptoms as Thalidomide sometimes does; as a surprise bonus a small percent had remission as well after the Revlimid. Many other MEDs are in research.
It took me over a year to get over shock and inertia and to start learning the terms and lore.
Our group leader had CMML DGS in 1996, was given a limited life expectancy in ’97. In 2005, he is trying to get his blood counts adjusted to pass his flight physical and keep on flying. An inspiration.

[Kathryn]

Hey Kerry,

I suppose doctors feel that they have to give you all or most of the information so that they have covered everything if something comes up. It doesn’t mean that what they say will always happen though. I learned this with my father’s situation. There is always hope. Take it one day at a time… keep searching for information. The better informed you are the better you can handle what may come up. This forum is a great place for information as well as support. It sounds like you are on the right path though and I am sure he will be well taken care of w/ Dr. Greenberg.

Take care Kerry. I will be praying for your father.

Kathryn

[kerrylai]

Thanks everyone, you do really provided all of the value information. Most importantly, you encourage me that I do not give up the hope.

In this group. It has two people confirm Dr. Greenberg at Standford is a good Doctor. It is also very good to know. thank you

[Sandy M]

Kerry,
I’m a bit late in responding to your post, but I’ve had a hard time logging into this site..
My name is Sandy, My fiance was a patient of Dr. Greenbergs, he’s a excellent Dr. and the top in this field, Stanford Univ. has a great reputation and after a initial consultation and some tests, they can work with your local hemo as far as a treatment plan goes so if traveling is a hardship they can follow Dr. Greenbergs suggestions in your own home town…good luck, he’s wonderful

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