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.

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.

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)

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

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.

PS: Should have checked my messages before this. Sorry.

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.

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