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Marrowforums Tue Aug 1, 2006 01:20 PM

New Member Welcome
 
If you are newly registered at Marrowforums, welcome to the forums and thank you for joining! We look forward to your participation.

Getting started

If you already have a question to ask other members, select the most appropriate forum, click the form title, click the New Thread button, and start typing! If you can't decide where to put your thread, take your best guess or use the all-purpose Questions and Answers forum.

As a new member, you should alsoYou may find the Quick Guide to the Forums to be handy for reference.

Telling us about yourself

We can all benefit when forum members share stories and information, form friendships, and support one another. How much you'd like to share is up to you. See Deciding How Much to Reveal in the Privacy Policy.

Just saying hi
  • If you'd like to post a quick hello, click the Post Reply button on this page (the New Member Welcome thread) and tell us that you've joined.
Share your stories
  • If you'd like to post more about your personal situation and personal history and share your ongoing experiences as you or a person you care about faces illness and treatment, go to the Tell Your Story forum and click the New Thread button to start a thread about yourself, so people can follow your progress and be your own personal cheering section. We suggest that you use your name or forum User Name in the thread title, e.g., Mary Smith's Journey, so others can most easily find and identify each other's threads.
Join the discussions
  • To discuss particular subjects related to bone marrow failure, treatment, and day-to-day issues, or to ask questions on these topics, you can post in existing threads or start new threads in the topic-specific forums. For example, you'd use the Transfusions and Iron Overload forum for discussion of chelation.
Look for others in your areaNote to former AA-MDS-TALK listserv members

If you did not register for Marrowforums under the same email address you used at AA-MDS-TALK, please send a Private Message to the administrators and tell us the email address you used at AA-MDS-TALK.

That way, we can correctly associate your messages in the AA-MDS-TALK Archive with your current membership so you will "own" your posts in the AA-MDS-TALK Archive.

bbsturm Tue Aug 15, 2006 02:15 PM

Thank you for your welcome greeting. I shall spend much of my free time exloring this great website. bety

cthomas Sat Aug 19, 2006 06:25 AM

Hi, I'm here and looking forward to the many messages I hope will soon fill the forum.

Chris Thomas

pattymyers Tue May 22, 2007 06:56 AM

Hi..I feel like I've finally found a web site for me. Looking forward to "meeting" other members...patty

stevej Mon Jul 2, 2007 07:22 PM

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

Neil Cuadra Mon Jul 2, 2007 09:51 PM

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.

Gabrielle Wed Jul 4, 2007 05:35 AM

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

Ruth Cuadra Wed Jul 4, 2007 07:18 PM

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

nana of sadie Tue Jul 24, 2007 11:04 AM

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

kertkkey2007 Fri Aug 10, 2007 08:19 PM

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

Martha M Sat Sep 29, 2007 09:24 AM

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.

Connie C Sun Dec 9, 2007 08:45 PM

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.

Zoe's Life Sun Dec 9, 2007 11:17 PM

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

Peter Sat Dec 29, 2007 12:01 PM

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.

Ruth Cuadra Sat Dec 29, 2007 06:39 PM

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

sue58 Sun Dec 30, 2007 08:49 AM

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

Ruth Cuadra Sun Dec 30, 2007 03:27 PM

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

Joan Wed Jan 16, 2008 05:31 PM

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.

Fred Kahn Mon Feb 11, 2008 03:40 PM

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.

AudreyB Sun Aug 10, 2008 10:58 PM

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.

Dick S Mon Aug 11, 2008 04:38 PM

Quote:

Originally Posted by AudreyB (Post 8222)
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.

Chris A Sun Aug 17, 2008 02:18 AM

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

Simon C. Sat Aug 30, 2008 07:28 AM

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!

Ruth Cuadra Sat Aug 30, 2008 02:15 PM

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

jobra818 Thu Jan 22, 2009 12:22 PM

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.


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