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This topic has 38 replies, 1 voice, and was last updated 19 years, 2 months ago by alexandra7.

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February 2, 2005 at 5:55 pm #3268

sarah
Member

Sorry to hear her hemoglobin has dropped. The platelets sound ok. What is her Dr saying ?

February 2, 2005 at 6:49 pm #3269

Palacelaw
Member

Her doctor was a little concerned that her hemoglobin dropped so drastically. She had two units of blood yesterday. She is still giving herself daily Procrit shots. I’m mainly concerned about her mood swings.

February 2, 2005 at 8:22 pm #3270

Suzanne
Member

Palacelaw, Do you know what type of MDS your Mom has?And is she being treated at a Center of Excellence or been to one for a consultation on treatment options? Maybe I missed it in an earlier post. It helps if you ad it to your profile signature. I think the disease itself can cause some depression. Sometimes people need some help with that. Suzanne

February 2, 2005 at 8:35 pm #3271

Suzanne
Member

Drew, Sorry I found the RAR designation by reading back. Do add info to your signature. It is hard to remember who is dealing with what.
As I have said before as long as they were able to keep me reasonably out of trouble even tho I was in a very high risk category when I was first diagnosed, they did so. Tried one drug trial and watched mme closely to get an idea of how the disease was going to progress with me and how I was going to react to drugs-everyone being individual. And partly at my request. When I progressed to AML, the treatment or supportive care decision became necessary. There are so many new developments in treatments recently that I think it is even more important to be in the care of a center of excellence that will keep up with what is happening.

February 2, 2005 at 8:51 pm #3272

sarah
Member

I have found comfort knowing that the Center of Excellences seem to be on the cutting edge of the research. We stay in contact with Drs at the Hutch.

February 2, 2005 at 9:37 pm #3273

Palacelaw
Member

Thanks for your help. We are planning a trip to the Cleveland Clinic Center of Excellence as I type.

February 11, 2005 at 8:35 pm #3274

Palacelaw
Member

Hi,

An update on my mom. She begins her second round of Vidaza next week. She is still taking Procrit once a week. Last week she received 2 units of blood.

Her latest CBC results (taken today): white blood cell count: 3.8; hemoglobin: 13.6; platelet count: 251.

Her doctor seemed encouraged by these results.

What does everyone else think?

February 11, 2005 at 9:20 pm #3275

Neil
Member

The counts are great!
There are many who would love to have them.
The doc should be encouraged

February 11, 2005 at 9:51 pm #3276

alexandra7
Participant

Hello Drew!!!
I don’t know much about vidaza or any other drug from this category because for the moment I don’t need to use any . I’m stable . I do not know if I got the right impression from you post but you kind of lost your hope . Am I wrong or am I right ? What you should understand is that MDS is very tricky . Don’t bother to think about survival rates . In this case they are not of any use . Your mother may have many years in front depending on here level of risk and of course of her will to fight. Try not to lose hope that is really very important . I ‘m sure you will find people here who can help you with your questions about the drugs. God be with you!!!Alexa
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