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  #1  
Old Tue Aug 1, 2006, 01:20 PM
Marrowforums Marrowforums is offline
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  #2  
Old Tue Aug 15, 2006, 02:15 PM
bbsturm bbsturm is offline
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Thank you for your welcome greeting. I shall spend much of my free time exloring this great website. bety
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  #3  
Old Sat Aug 19, 2006, 06:25 AM
cthomas cthomas is offline
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Hi, I'm here and looking forward to the many messages I hope will soon fill the forum.

Chris Thomas
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  #4  
Old Tue May 22, 2007, 06:56 AM
pattymyers pattymyers is offline
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Hi..I feel like I've finally found a web site for me. Looking forward to "meeting" other members...patty
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  #5  
Old Mon Jul 2, 2007, 07:22 PM
stevej stevej is offline
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Location: Placerville, California, USA
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Just a friendly hello

Just a note to say hello as a new member. My mother was diagnosed about a year ago with MDS. So our mission and goal like many others here is to find out as much as we can in order to fight this disorder and condition. It is not very easy to read between the lines with what medical information is available. It is almost as if you should have a degree in medicine to even know what you are reading. Current doctor is wanting to have her start on the Vidaza, however not sure that is the right decision. She has been on procrit and that has seemed to help white, red cell count. Any feed back on the Vidaza or similar drug therapy would be appreciated. Thanks....Steve
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  #6  
Old Mon Jul 2, 2007, 09:51 PM
Neil Cuadra Neil Cuadra is offline
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Hi Steve. I'm sorry to hear that your mother has MDS. You are doing exactly the right thing by seeking information. It's very likely that members here can help you learn to understand the medical terminology you are hearing.

You may not often meet people over the Internet who have heard of Placerville, California, but since one of my family members used to live in Placerville I've been to the town many times!

Since this is a "say hello" thread, I suggest that you start a new thread in the MDS forum if you have specific questions about your mother's treatment choices. If you do, please mention her age, since that can be an important factor when choosing the best treatment option.

If you have questions specifically about Vidaza, we also have a Drug Treatments forum.
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  #7  
Old Wed Jul 4, 2007, 05:35 AM
Gabrielle Gabrielle is offline
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Gabrielle says hello

Hi,
I'm Gabrielle in NSW Australia. I was diagnosed with AML a year ago, and had chemo which put that into remission. The doctors think I had myelodysplasia before that.
Then in March I had a mud BMT at St Vincents. I feel great, and am looking forward to getting off the cyclosporin.
I would like to hear other people's experiences of muds and bmts.
cheers
Gabrielle
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  #8  
Old Wed Jul 4, 2007, 07:18 PM
Ruth Cuadra Ruth Cuadra is offline
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Hi, Gabrielle.

Welcome to Marrowforums. As you well know, MDS is a rare disease and there are even fewer of us who have had transplants for it. It's good to hear from someone who is feeling well.

You can read about my experiences with an MUD (matched unrelated donor) transplant on my Personal Profile page. We also have a Transplants forum where you can post questions and comments.

Regards,
Ruth Cuadra
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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  #9  
Old Tue Jul 24, 2007, 11:04 AM
nana of sadie nana of sadie is offline
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new to site

I am so thankful for this site. It appears that the ones who have AA know more about the condition than most of the doctors trying to treat it. I look for to getting to know you all. Denise-nana of Sadie
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  #10  
Old Fri Aug 10, 2007, 08:19 PM
kertkkey2007 kertkkey2007 is offline
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Location: Rome, Ga
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Hi Stevie

Welcome to the Marrowforms. My Husband has MDS. he was diagnoised in 2004. he only has problems with his WBC. and platelets. He has been on Dacogen since last Aug. He went 4 months last time after a series of treatments without anything before his counts started going back down. He never tried the viadiza, but he is very happy with the Dacogen, no side effects except contipation. good luck
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  #11  
Old Sat Sep 29, 2007, 09:24 AM
Martha M Martha M is offline
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Question New to site

My brother was diagnosed with MDS, RARS two years ago. He has been lucky enough to be stable on Procrit injections alone until 3 weeks ago when the Dana Farber found an increase in blasts in his bone marrow. (I wish I had more specific numbers, counts etc.) He was given the choice of starting Dacogen or Vidaza. Primarily for convenience he chose the Dacogen (being able to receive treatment closer to home. He lives north of Boston and is being treated by a Dr. Spieler at Merrimac Medical ctr. in conjunction with Dr. Martha Wadleigh at the Dana Farber. I believe his diagnosis is now RAEB I. The most frustrating thing about all of this is that his counts have been good for quite a while now. He's never needed transfusions. My questions are, how does one make an informed choice between Vidaza and Dacogen when the doctor basically said, you decide. Has anyone been able to work while on Dacogen?
How have people who have been on Dacogen handled the immune system risks? I appreciate being a part of this supportive network. Thanks in advance for any feedback.
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  #12  
Old Sun Dec 9, 2007, 08:45 PM
Connie C Connie C is offline
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Connie C

Hi ya'll. I've never used a forum so be patient please! Totally confused. I was diagnosed with MDS5q- in 1990. I am now 58 years old. Had 2 units red cells every other week (Sometimes more) for 8 years. Also on Desferal at that time. In '98 started making red cells again and have had no more transfusions to date. Have iron overload and not supposed to have any organs intact because of that but still here after 17 1/2 years. I was on the Epogen study about a year after getting sick, didn't help. Tried Exjade for the overload when it first came out, had problems. So basically, I just keep on going on living second to second, although I feel like I'm 108! Doctors are perplexed but after all I figure I got to raise my 3 sons so I can't complain.
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  #13  
Old Sun Dec 9, 2007, 11:17 PM
Zoe's Life Zoe's Life is offline
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Connie,

Welcome! Your story is encouraging to me. I was diagnosed 5q- a year ago at 47. So far I am managing well on Aranesp. I love hearing stories of people who have done well for so long. I am sure you will have a great deal to teach us relative newbies.

Zoe
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Diagnosed MDS-RA 5q- at age 47 (November 2006). Aranesp 2/07, good response.
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  #14  
Old Sat Dec 29, 2007, 12:01 PM
Peter Peter is offline
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new member checking in

Hi my name is Peter and I was diagnosed with MDS in September. I owe a great deal to my primary care doctor for a early diagnosis. Iam 44 years old and was in good health except I kept getting tired. Iam now on the wait list for a BMT to be done in Indiana. Thanks for haveing this for all of us.
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  #15  
Old Sat Dec 29, 2007, 06:39 PM
Ruth Cuadra Ruth Cuadra is offline
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Welcome, Peter. I'm glad you found us. I was also in my early forties and in otherwise good health when I was diagnosed--first with aplastic anemia and then with MDS. I too owe a lot to my PCP for being alert and sending me to a hematologist immediately.

I hope that you'll share your progress toward transplant with us and feel free to ask questions as they arise. We are here to help and support each other.

Regards,
Ruth Cuadra
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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  #16  
Old Sun Dec 30, 2007, 08:49 AM
sue58 sue58 is offline
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Transplant

My companion is getting his Transplant Jan 9 and any suggestions on what I will need to know, bring to the hospital ....anything at all will be helpful. I am really scared, what if he doesn't make it.....I know he is scared too.

Susan
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susan caregiver and friend for Frank, transplant date Jan 9,2008
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  #17  
Old Sun Dec 30, 2007, 03:27 PM
Ruth Cuadra Ruth Cuadra is offline
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Welcome to Marrowforums, Sue.

Frank's hospital has probably given him a list of things to bring, including comfortable clothes, toiletries, books, music, etc. When I had my transplant, I wore my own nightgowns every day rather than that awful hospital garb. But now I think people tend to wear sweats or anything else that's easy to get on and off. I wasn't able to read much so I mostly watched TV when I was awake, but everyone is different so having something to pass the time with is helpful. Patients tend to be cold during this process so a robe, sweater, jacket, or warm shirts that can be worn in bed may help. As a general rule, don't bring any valuable possessions to a hospital.

If you are going to be at the hospital a good part of the time, you should be sure you have enough to keep you occupied and food for snacks and/or meals (vending machines and hospital cafeterias can get expensive!). You will want to keep track of Frank's care, so having a notebook is important.

You'll find a lot of useful information at the websites of BMT Infonet and the National Bone Marrow Transplant Link. They are both very good organizations that are set up specifically to help patients and caregivers through the transplant process.

I hope you'll keep us posted about Frank's progress in our Transplants forum. Let us know his diagnosis and where he is being treated. There may be members here with experience at the same treatment center who can help you.

Regards,
Ruth Cuadra
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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  #18  
Old Wed Jan 16, 2008, 05:31 PM
Joan Joan is offline
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Just joined

Hi, I just joined this afternoon. I wrote a story of my husband's dx and treatment. He has had MDS for a couple of years.
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  #19  
Old Mon Feb 11, 2008, 03:40 PM
Fred Kahn Fred Kahn is offline
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Exclamation Hello Group

My disease is myelofibrosis and I consider myself to be somewhat lucky. I contracted polycythemia vera in or around 1995 and it converted about 3 years ago. I am 70, so i'm ahead of the curve, I hope.
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  #20  
Old Sun Aug 10, 2008, 10:58 PM
AudreyB AudreyB is offline
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Thumbs up hello all

my name is Audrey and i was recently diagnosed in April after going through many iron transfusions i guess i am relieved to know what was making me so tired but now i am a little scared and depressed about this. I am currently taking procrit shots and my levels seem to be holding for now. I am so glad to find other people who are going through this because i have no support from my family and with this site i dont feel so alone in my fight thank you for this site. I am also in the military so i am a little worried how this will affect the rest of my career i have 2 years of my 18 years left before i retire so i hope they let me finish.
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AudreyB dx in April with MDS.
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  #21  
Old Mon Aug 11, 2008, 04:38 PM
Dick S Dick S is offline
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Quote:
Originally Posted by AudreyB View Post
i have 2 years of my 18 years left before i retire so i hope they let me finish.
I hope and pray you make it. We are all in the same small lifeboat and most of us feel exactly like you do. Hang around the forum, there are some very knowledgeable people here about the disease. I've seen some that would rival doctors.
Good luck and we will pray for you.
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Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1.
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  #22  
Old Sun Aug 17, 2008, 02:18 AM
Chris A Chris A is offline
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Location: Edmonton, AB, Canada
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THank You!!

I just wanted to post a quick thank you to the site administrators. It was a great help to me both mentally as well as emotionally to read through the experiences of others going through the same problems as myself. I have been a regular visitor to the Marrowforums for the last 3 months (since I was diagnosed) and have been more prepared for what I have faced. I look forward to writing my story on the web site and sharing my experiences with others, in the hopes that they might provide some measure of comfort to others, as I have received from the existing postings.

Once again, thank you to the administrators as well as all contributors. I have found some great information and some measure of comfort in coping with my disease.

Chris A
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Chris, Age 41, Diagnosed AA 2008, treated with ATG/CsP in 2008; relapse in 2012; treated with CsP; partial remission; relapse in 2014; currently on CsP
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  #23  
Old Sat Aug 30, 2008, 07:28 AM
Simon C. Simon C. is offline
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Location: Washington, DC
Posts: 2
New MDS member, have had transplant

Hi, everyone. I just found this fabulous website and am looking forward to learning a lot and sharing as well. I have MDS-RAEB/leukemia. I just relapsed following a double-cord blood transplant a little over two years ago. If anyone wants to know more about my experience, I have a blog at http://schaitowitz.blogspot.com/

Looking forward to getting to know some of you!
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Ms. Simon Chaitowitz, diagnosed MDS-RAEB 11/05; double-cord blood transplant 4/06; relapsed 7/08. On Vidaza now.
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  #24  
Old Sat Aug 30, 2008, 02:15 PM
Ruth Cuadra Ruth Cuadra is offline
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Welcome, Simon. I see from your blog that you've been through many of the same things that other folks here are dealing with now. Sorry to hear that you've relapsed after transplant. In my experience, it helps a lot to be able to talk through what it's like to fight MDS with people who have "been there, done that." I hope you'll feel free to jump into the conversations here and share your experiences or ask about new issues you are now facing.

Regards,
Ruth Cuadra
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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  #25  
Old Thu Jan 22, 2009, 12:22 PM
jobra818 jobra818 is offline
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Location: Raymore, Missouri
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New here-but long time sufferer

Thank you for welcoming me to the site. I am happy to finally find people like me. I am very glad that a volunteer from AA&MDSIF led me to this site, thank you.
__________________
Brandy age 32, diagnosed AA 1988; treated w/ ATG supplimented w/ oxymethalone in 1988, diagnosed ITP 1992, diagnosed PNH 2007,currently on cyclosporine & coumadin.

Last edited by jobra818 : Thu Jan 22, 2009 at 12:40 PM.
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