Home         Forums  

Go Back   Marrowforums > Community > Tell Your Story
Register FAQ Search Today's Posts Mark Forums Read

Tell Your Story Say hello or share your experiences

Reply
 
Thread Tools Search this Thread
  #1  
Old Tue Aug 10, 2010, 09:45 PM
Jayceechic Jayceechic is offline
Member
 
Join Date: Aug 2010
Location: Gaithersburg, MD
Posts: 4
Another newbie with MDS

I'm 41 and was just diagnosed with MDS. I was treated for non-Hodgkin's lymphoma in 2007 and life was going pretty good until a couple of months ago when I noticed new bruises, bleeding gums, and a really hard time breathing during my training runs (for a disastrous 5k in June that I could barely finish). I'm looking for people in my age group especially for support. I'm facing a stem cell transplant (but not 100% sure whether it would be BMT). I found out tonight my brother is not a match so I will need to search the national registry for a donor match. I'm also trying to figure out where to go for treatment as my NIH doctors don't do un-related transplants. I'm scared and overwhelmed by all of the decisions I'm facing and would appreciate any advice.

Thanks!
Angela
__________________
Angela; diagnosed NHL April 2007 -treated w/6 cycles EPOCH; diagnosed MDS July 2010; currently looking for BMT match
Reply With Quote
  #2  
Old Wed Aug 11, 2010, 01:22 AM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,556
Angela,

I can appreciate how overwhelming it feels. So many MDS patients had no idea they were seriously ill until they got this diagnosis. Even with your symptoms you probably weren't expecting to be broadsided this way.

Have you met with an MDS specialist at NIH or been referred to one? You should make sure you've discussed all of your options with an MDS expert. Get the free MDS booklets from the Aplastic Anemia & MDS International Foundation (AA&MDSIF) so you can learn as much as you can about this disease.

Like you, my wife was 41 when diagnosed and did not have a sibling match. You can read her story here. She made it through her matched-unrelated-donor transplant and so can you.
Reply With Quote
  #3  
Old Wed Aug 11, 2010, 04:25 PM
Al's Wife Al's Wife is offline
Member
 
Join Date: Jun 2010
Location: Jackson, Georgia USA
Posts: 205
Angela,

Just wanted you to know that there are a lot of us who have felt that overwhelming OMG feeling when given the MDS diagnosis. My husband was diagnosed May 26th and I will never forget sitting in that doctor's office. Unlike you though, he is 73 and not able to have a transplant. I will pray that they will find a suitable match for you.
God bless you and keep us posted.

Linda
Husband dx 5/26/2010; Vidaza 28 day cycle.
Reply With Quote
  #4  
Old Thu Aug 12, 2010, 10:08 PM
Jayceechic Jayceechic is offline
Member
 
Join Date: Aug 2010
Location: Gaithersburg, MD
Posts: 4
Thank You

Thank you both for your response as I appreciate any words of comfort.

Neil - I was a previous patient at NIH and was going there for my 3 year cancer-free anniversary checkup when it all hit the fan. I had suspected something was wrong in May/June but had NO idea it would be this. I had my first clue it could be bad during the middle of a 5k race in June when I could not breathe after mile 1 and had to walk/run just to finish. I crossed the finish line and collapsed into tears because I just something bad was going on. Ha ha - was I right.

Anyway, my cancer doctors at NIH passed me over to Dr. Sloand, an MDS specialist, and I've been working with her somewhat to figure this out and see if my brother is a match. Since he's not a match, I'm meeting with her tomorrow and a transplant team from NCI at NIH to consider a pilot study of un-related donor transplants. I'm a lot scared because there are only 25 patients on this study, but I will talk to them. I'm also meeting with Johns Hopkins and trying to get a consultation with MD Anderson.

What's so overwhelming to me is that we (the patient) has to do all of this research without understanding the terminology and we're scared and confused. Then we have to figure out our best course of action and pick a transplant team we hope and pray will get the job done and we can go on to live a long, happy life. It's scary!
__________________
Angela; diagnosed NHL April 2007 -treated w/6 cycles EPOCH; diagnosed MDS July 2010; currently looking for BMT match
Reply With Quote
  #5  
Old Thu Aug 12, 2010, 10:39 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,556
Angela,

You are in great hands with Dr. Sloand. We've heard her speak at patient conferences. She's very knowledgeable and knows how to talk to and explain things to patients, a skill not all doctors have.

Good luck at the appointment. I hope it becomes clear whether the study makes sense for you.
Reply With Quote
  #6  
Old Thu Aug 19, 2010, 03:11 AM
ann ann is offline
Member
 
Join Date: Aug 2009
Location: Burleson, TX
Posts: 77
Al's wife

I know just how you felt when your husband was given the diagnosis of MDS. My husband was diagnosed on June 30, 2009. We were told that he had from 4 months to unknown, we chose the unknown. He has been on a 28 day cycle of Vidaza and it seems to be doing what it is supposed to do. In the meantime, other problems have risen. I think they are contributed to by the MDS but congestive heart and pulmonary edema have kept us busy going to, not only the oncologist but a cardiologist, a primary care physician and a pulmonary doctor. We thank God for each and every one who are treating my husband. We are going through a rough spot at this time but don't count us out. I feel like MDS is a disease of all the family. Each one of us just have to do the very best we can to keep our loved ones' spirits up as well as our own. God bless all you Caregivers.
ann


Quote:
Originally Posted by Al's Wife View Post
Angela,

Just wanted you to know that there are a lot of us who have felt that overwhelming OMG feeling when given the MDS diagnosis. My husband was diagnosed May 26th and I will never forget sitting in that doctor's office. Unlike you though, he is 73 and not able to have a transplant. I will pray that they will find a suitable match for you.
God bless you and keep us posted.

Linda
Husband dx 5/26/2010; Vidaza 28 day cycle.
__________________
Ann, wife of Henry 73 year old diagnosed MDS, congestive heart disease and pulmonary edema..
Reply With Quote
  #7  
Old Fri Aug 20, 2010, 12:15 AM
Gloria J Gloria J is offline
Member
 
Join Date: Sep 2009
Location: New Jersey
Posts: 53
Angela,

I'd like to chime in with Neil - Dr. Sloand is an amazing doctor. I was lucky enough to have her finish up a bmb I was having at NIH that the first doctor could not manage. She was incredibly competent, skilled, very quick! She also was involved with my medical team during my ATG treatment, and I always enjoyed speaking with her - very clear, and direct. You'd be in very good hands with her as your doctor.
__________________
Gloria, early 50s, dx SAA Summer 2007, Pred July 07, Rituxan Aug 07, dx PNH Feb 2008, ATG Apr 08, began Soliris 5/31/11
Reply With Quote
  #8  
Old Fri Aug 20, 2010, 10:05 AM
Susan L Susan L is offline
Member
 
Join Date: Jun 2010
Location: Ga
Posts: 245
Dr Sloand

Hi - I also had the opportunity of being treated by Dr Sloand - she is fantastic. She explained and took very good care of me during my ATG treatment 7 yrs ago. I wish she was closer and I could see her again for my problems now.
__________________
Susan Patient, 58, MDS, UPDATED 9/13
Now have RAEB-2, Firbrosis 3+, blasts 18% peripheral, 10 - 14% blasts marrow, chromosomes now T 1:21, trisonomy 16 and 1.- Match found ---10/10 -couldn't believe when I heard - Tentative day is 1/09th!!!! Admit date changed to 11/12. WOW -
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
MDS - VA assigns diagnostic code 7725 Tommy Daniels MDS 4 Sun Jan 22, 2017 03:51 PM
New Tool: MDS Classification Marrowforums Site Announcements 7 Tue Jan 4, 2011 05:12 AM
Newbie with MDS Caroltri Tell Your Story 3 Tue Jul 13, 2010 02:21 PM


All times are GMT -4. The time now is 05:24 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