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  #1  
Old Tue Sep 12, 2017, 11:53 PM
AliceKay1 AliceKay1 is offline
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Location: Walnut Creek CA USA
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Hi. I'm new to this forum.

Hello. I'm 79, and I was diagnosed with high risk MDS 3 months ago. I've finished 3 cycles of Vidaza. I know very little about this disease, so I'm hoping to learn a lot from all of you.

I did go to one evening of a support group, but there was no one there with MDS. I plan to use this forum as my support group, so I hope to meet several of you soon.
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  #2  
Old Wed Sep 13, 2017, 11:55 AM
Neil Cuadra Neil Cuadra is offline
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Welcome, AliceKay1.

I hope Vidaza is helping you and that you haven't had much trouble from side effects.

Have you been following your blood count numbers? Low counts are usually the first sign of trouble, leading to the diagnosis, and the hope is that counts will rise after a certain number of Vidaza cycles.

Was the meeting you attended the Oakland Leukemia & Lymphoma Society chapter? Sometimes MDS patients show up at LLS meetings, but mostly they are leukemia and lymphoma patients. Some issues are common to everyone, but I know it's not the same as talking to another MDS patient.

If you can make it around the bay, there are 10 meetings a year of the San Francisco Bay Area MDS Support Group in Palo Alto.
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  #3  
Old Wed Sep 13, 2017, 11:57 PM
Hopeful Hopeful is offline
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Quote:
Originally Posted by AliceKay1 View Post
Hello. I'm 79, and I was diagnosed with high risk MDS 3 months ago. I've finished 3 cycles of Vidaza. I know very little about this disease, so I'm hoping to learn a lot from all of you.

I did go to one evening of a support group, but there was no one there with MDS. I plan to use this forum as my support group, so I hope to meet several of you soon.
Hi AliceKay,

If you can make it to Stanford on October 28th, the MDS Foundation is hosting a free MDS Patient Forum from 9:30-2:00. Dr Greenberg will be one of the guest speakers, and he is a leading expert in the disease. You will meet lots of patients with MDS and their caregivers, plus you will have an opportunity to speak to experts on treatment. Check out the "News and Events" section of this site for more information.
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50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #4  
Old Thu Sep 14, 2017, 05:32 PM
AliceKay1 AliceKay1 is offline
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Join Date: Sep 2017
Location: Walnut Creek CA USA
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Thank you

Thank you, Hopeful and Neil Cuadra, for responding so quickly and for telling me about the meeting in Palo Alto. I'll see if my daughter is free that day to go with me. Thanks so much.
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  #5  
Old Thu Sep 14, 2017, 06:54 PM
AliceKay1 AliceKay1 is offline
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Join Date: Sep 2017
Location: Walnut Creek CA USA
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Cancer Support Community

Quote:
Originally Posted by Neil Cuadra View Post
Welcome, AliceKay1.

I hope Vidaza is helping you and that you haven't had much trouble from side effects.

Have you been following your blood count numbers? Low counts are usually the first sign of trouble, leading to the diagnosis, and the hope is that counts will rise after a certain number of Vidaza cycles.

Was the meeting you attended the Oakland Leukemia & Lymphoma Society chapter? Sometimes MDS patients show up at LLS meetings, but mostly they are leukemia and lymphoma patients. Some issues are common to everyone, but I know it's not the same as talking to another MDS patient.

If you can make it around the bay, there are 10 meetings a year of the San Francisco Bay Area MDS Support Group in Palo Alto.
Thank you, Neil. No, the group I went to was at the Cancer Support Community in Walnut Creek, close to where I live.
Am I using this forum correctly, by the way? This reply to your post, by the way???
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AliceKay1, 79 years old, dx MDS 2017, being treated with Vidaza
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  #6  
Old Thu Sep 14, 2017, 07:02 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by AliceKay1 View Post
Am I using this forum correctly, by the way? This reply to your post, by the way???
You are using the forum system perfectly.

You figured out how to start a new discussion thread, you figured out that you can click the Post Reply button to add a message to a discussion thread, and you figured out that you can click the Quote button to quote somebody else's post as you reply.

You also figured out how to set your signature, fill in your user profile, and even upload a profile picture.

So you don't need any lessons from the rest of us, and you could probably teach some of our other new members how it works!
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  #7  
Old Fri Sep 15, 2017, 01:43 PM
GoodDay5150 GoodDay5150 is offline
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Hi AliceKay1. In case you are not aware of NORD, it is a great resource for information regarding MDS as well as other bone marrow diseases.

https://rarediseases.org/rare-diseas...tic-syndromes/


good luck in your treatment

Mario
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MARIO, 46, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD.
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  #8  
Old Sat Sep 16, 2017, 10:18 AM
AliceKay1 AliceKay1 is offline
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Join Date: Sep 2017
Location: Walnut Creek CA USA
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Thank you

Quote:
Originally Posted by GoodDay5150 View Post
Hi AliceKay1. In case you are not aware of NORD, it is a great resource for information regarding MDS as well as other bone marrow diseases.

https://rarediseases.org/rare-diseas...tic-syndromes/


good luck in your treatment

Mario
Thank you, GoodDay5150.
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AliceKay1, 79 years old, dx MDS 2017, being treated with Vidaza
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