Home         Forums  

Go Back   Marrowforums > Regional Discussions > Your Local Area
Register FAQ Search Today's Posts Mark Forums Read

Your Local Area Connect with people in your city, state, province, or region

Reply
 
Thread Tools Search this Thread
  #1  
Old Tue Mar 17, 2009, 04:13 AM
Vernette Vernette is offline
Member
 
Join Date: Jul 2007
Location: Capitola, CA 95010
Posts: 21
Santa Cruz County, CA

Is there any one out there that has MDS and feels very alone? Like I do??
Maybe around Santa Cruz County here in Central Coast, CA.
Reply With Quote
  #2  
Old Fri Mar 20, 2009, 08:34 PM
Mike Conlon Mike Conlon is offline
Member
 
Join Date: Mar 2009
Location: Zelienople, Pa.
Posts: 32
MDS and Loneliness

Hi Vernette: Yes it can be very lonely because it just isn't possible for people to really know what we go through. I live in Zelienople, Pa. which is far from you but I am glad to correspond and if we can figure out a schedule I would be glad to call from time to time. I am so fortunate, dx in May 07, blasts 12%, low counts. Counts in good range, blasts below 2% by Nov 07, total remission Feb 09. I find the uncertainty going forward that is the most difficult. I am on Dacogen and it's approval is three years in May so there is not a vast supply of data to get any feel good vibes at this time. Just the fact that I am in remission feels good, but it would be nice to see historical statistics that would give me some idea of possible future outcomes. Marrowforums is a great place to learn more about MDS and it helps with understanding how other people are treated and also to know that you are not alone with MDS.
__________________
Mike Conlon
Go Steelers(Seven is Heaven)
Reply With Quote
  #3  
Old Fri Jul 31, 2009, 03:54 PM
Matt W Matt W is offline
Member
 
Join Date: Jul 2009
Location: Santa Rosa, Ca
Posts: 1
Hi Vernette- I'm not that far away - Sonoma County, and periodically go to Santa Cruz. DX in 9/06 with CMML. Never been treated-doing "watchful waiting" Blasts have gone from 5% at DX to 3 % (2/09). I am not transfusion dependent. My real problem is low platelets and a mild anemia. It feels very lonely at times and I do communicate with someone on the east coast. Let me know if I can be of help.
Matt (go niners)
Reply With Quote
  #4  
Old Wed Sep 30, 2009, 02:13 AM
Jill2008 Jill2008 is offline
Member
 
Join Date: Jul 2008
Location: Redding, CA
Posts: 84
Smile

Hi Vernette,
I live in Redding, but travel to Stanford for follow-up exams every two to three months. I usually stay overnight with my parents in Los Gatos, so if you ever want to get together let me know. I have an appt. at the end of this week, but that may be too soon to plan something.
I was diagnosed with MDS-unclassified in June 2008 and in Sept. I was to have a Stem Cell Transplant. I am fortunate to have five unrelated matched donors. I left my job when they started pre-transplant testing and then my counts suddenly stabilized. We have been "watching and waiting" ever since. Every time I have my blood work done, I hold my breath and hope there isn't any change. At some point it will happen but I'm enjoying this time I have with my husband, three daughters and new granddaughter.
I would like to hear more about your story. Feel free to send me a message anytime.
Jill
__________________
Jill, 58 y/o female dx with MDS-U June 2008, IPSS:Int. 2. Allogeneic SCT May 25, 2010. Relapsed January 2011. Started Vidaza (azacitadine) Feb. 2011; Currently on cycle #58 , IV, 5-days every six weeks. WBC 5.3, Hgb 13.0, PLT 110 (2/16/18)
Reply With Quote
  #5  
Old Wed Jul 28, 2010, 03:04 AM
Vernette Vernette is offline
Member
 
Join Date: Jul 2007
Location: Capitola, CA 95010
Posts: 21
Thanks for responding.

I really appreciate it. Have you heard that there will be a Patient and Family
Conference at Palo Alto, Sheraton Hotel, on October 2nd. I have no details except the date. I have already RSVP'd for my daughter, Denise, and myself.
My husband passed away with MDS in 2000, six years later I have the same. Please, watch out for your loved ones. Oh, I know - they say it is not 'catching' but my Oncologist told me he treats couples with MDS and that says something.
Palo Alto is a little far from PA, maybe even Redding, but Los Gatos is close.
Hope to see you there.

Oh - any one that has NOT gone to a Conference, or the one-day outing, you really should do so. Went to one in LA a while back and really learned a lot and enjoyed it.
Reply With Quote
  #6  
Old Wed Jul 28, 2010, 03:07 AM
Vernette Vernette is offline
Member
 
Join Date: Jul 2007
Location: Capitola, CA 95010
Posts: 21
PS: Should have checked my messages before this. Sorry.
Reply With Quote
  #7  
Old Tue Aug 3, 2010, 12:09 AM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
Quote:
Originally Posted by Vernette View Post
Have you heard that there will be a Patient and Family Conference at Palo Alto, Sheraton Hotel, on October 2nd. I have no details except the date. I have already RSVP'd for my daughter, Denise, and myself.
Vernette,

You are probably talking about the free one-day MDS conference that will be put on by the Myelodysplastic Syndromes Foundation. It'll be in Palo Alto, California, on Saturday, October 2, 2010.

The MDS Foundation told me that the location and other details have not been announced so perhaps what you heard about the Sheraton Hotel is tentative.

I'll let you know as soon as I get more details. If it's like the one coming up in Gainesville next month, it'll be half a day long and you'll get to hear from an MDS expert, have questions answered, and meet and talk to other MDS patients.
Reply With Quote
  #8  
Old Fri Aug 6, 2010, 12:26 AM
sanadon sanadon is offline
Member
 
Join Date: Aug 2010
Location: California
Posts: 8
conference

My husband and I will be going to the conference in Palo Alto also; we have RSVP'd. He was diagnosed just 2 weeks ago with secondary MDS. I have searched the internet, read books, and searched the internet some more. We are WAITING for a call from Stanford for his "evaluation". What should we e4xpect from this meeting? It's nice to be able to go through these forums and read all these stories. I know everyone is different but It gives us some idea on how things will go.
Sylvia
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Santa Fe New Mexico LLS/Community of Hope Support Group Marrowforums Support Groups and Communities of Hope 0 Wed Jan 14, 2015 01:21 PM
Santa Cruz California LLS/Community of Hope Support Group Marrowforums Support Groups and Communities of Hope 0 Tue Dec 2, 2014 08:22 PM
rowan county nc jayc Your Local Area 3 Mon Mar 18, 2013 04:44 PM
Orange County, California BeautyForAshes Your Local Area 1 Sun Mar 7, 2010 12:50 AM
youtube video (AA mentioned) Nicole AA 7 Wed Sep 3, 2008 02:23 PM


All times are GMT -4. The time now is 10:17 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org