New Member Welcome [Archive]

Marrowforums

Tue Aug 1, 2006, 01:20 PM

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 (http://forums.marrowforums.org/), 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 (http://forums.marrowforums.org/forumdisplay.php?f=23) forum.

As a new member, you should also Review the Forum Rules and the Posting FAQ (http://www.marrowforums.org/faq/posting.html).
Read the Privacy Policy (http://www.marrowforums.org/privacy.html).
Fill in your User Profile (http://forums.marrowforums.org/profile.php?do=editprofile) if you'd like to provide some personal information to other members.
Set your User Options (http://forums.marrowforums.org/profile.php?do=editoptions) to customize your forum displays and features.
Fill in your Forum Signature (http://forums.marrowforums.org/profile.php?do=editsignature), if you'd like to have one. The convention at Marrowforums is to use a signature that indicates your relationshp to the patient, the diagnosis, and perhaps the treatment(s) used. See What are signatures and what should I set mine to? (http://www.marrowforums.org/faq/features.html#q2)
You 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 (http://www.marrowforums.org/privacy.html#deciding_how_much_to_reveal) in the Privacy Policy (http://www.marrowforums.org/privacy.html).

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 (http://forums.marrowforums.org/forumdisplay.php?f=25) 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 (http://forums.marrowforums.org/). For example, you'd use the Transfusions and Iron Overload (http://forums.marrowforums.org/forumdisplay.php?f=13) forum for discussion of chelation.
Look for others in your area
You can browse, search, or post in the Your Local Area forum to connect with other patients in your geographic area. See How to find patients in your area.
Note 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 (http://www.marrowforums.org/aamdstalk.html), please send a Private Message to the administrators (http://forums.marrowforums.org/private.php?do=newpm&u=2) 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 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

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

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

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

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

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

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

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 (http://www.bmtinfonet.org/) and the National Bone Marrow Transplant Link (http://www.nbmtlink.org/). 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 (http://forums.marrowforums.org/forumdisplay.php?f=14) 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

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

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

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

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

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

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

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.

april

Tue Feb 24, 2009, 08:27 PM

Wow! It is so nice to find this forum. My dad was just diagnosed with MDS. It has been very stressful trying to find information about the disease, therapies and drugs available on my own. Comforting to know that there is somewhere to turn.

Mike M

Tue May 26, 2009, 12:57 PM

Hi to all. I'm new to the Marrowforums and very happy to have found this site. I was diagnosed with MDS in Nov. 2008 and look forward to participating in the forum. Rgds Mike M

Nanny W

Fri Jun 5, 2009, 01:27 PM

Neil Cuadra

Fri Jun 5, 2009, 05:11 PM

Hi Nanny W. I hope they find a perfectly matched donor for your grandson.

In addition to looking for other people with similar circumstances at Marrowforums, I suggest that you ask the National Bone Marrow Transplant Link (http://www.nbmtlink.org/) if they can connect you with another parent or grandparent through their Peer Support on Call (https://nbmtlink.readyhosting.com/secure/peersupportrequest.html) service and also that you ask the Aplastic Anemia & Myelodysplasia Association of Canada (http://aamac.ca/) about their peer-to-peer support service.

sandra

Fri Jun 5, 2009, 09:56 PM

I have a lot of question about bmt. my grandson will be receiving one as soon as a donor is found and I have searched out a lot of web sites regarding this but would like to talk to other parents or grandparents who hve allready gone through this with their child

Hi!

One way to go is to check out caringbridge sites (online journals) of families who's children have recently underwent BMTs for AA.

There are two kids in Canada about your grandson's age:

Evan, he had his BMT at Sick Kids in Toronto, his mother is very knowledgeable and the site is very informative

http://www.caringbridge.org/visit/evanmacneil

Aurora had her transplant at Children's in Calgary, I'm amazed at how well she's doing considering she only had a 4/6 match

http://www.caringbridge.org/visit/aurora

In US there is Faith who had her transplant with Dr. Margolis in Wisconsin and is doing well one year post transplant

http://www.caringbridge.org/visit/prayforfaith

18 year old Grant is still in Wisconsin after 9 mo in hospital, but he might go home soon

http://www.caringbridge.org/visit/grantbeltrami

Kayleigh had a sibling donor, but she had a long recovery due to the fact that her initial team of doctors overestimated the seriousness of her GVHD and she got way too much steroids

http://www.caringbridge.org/visit/kayleighinaz

All the best to your grandson.

Sandra

mizclaws

Thu Jun 11, 2009, 01:25 PM

im just home from cardiac ward where i was told i had this disease....ive had a bone marrow biopsy..and await results.....ive other illness but..this one worries me alot

i am a new member, i thank you for the warm welcome...i am a writer/artist also a brit living in usa

after 3 days...no-one has been in..or even said a lil hi...i dont think this is the place for me

success in recovery to you all

bye bye

David M

Sun Sep 20, 2009, 11:17 PM

Hi all! Just wanted to say hello and to let you know I've joined the forum. I submitted my story on the My Story page. I look forward to hearing from some of you!

annemvl

Mon Mar 8, 2010, 02:29 PM

Hi everyone - I'm 51 and was just diagosed with Severe AA about a month ago. Spent 15 days in the hospital, during which time I received Horse ATG serium treatment. I've been home for about 2 weeks now, on cyclosporin and all the anti-virals, anti-fungals, etc. My blood levels are totally unpredictable - up and down (though usually down). I have my first follow up appt with my dr. this Thursday so am anxious to hear if he has any "verdict" yet as to whether or not the treatment was successful for me.

It is a very scary time I admit - so glad to know that this forum is out there so none of us have to go through this alone!

Good health and high numbers to everyone!

simplistic007

Sat May 22, 2010, 11:02 AM

I am 43 years old and I was just diagnosed with MDS. I am very scared and I am on a donor's list for BMT. If the bone marrow in August shows any changes, I will have to go BMT. Any input or information you can provide, I would greatly appreciated. Thank you.

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.

bebop

Sat May 22, 2010, 06:22 PM

thanks for making this site!

My Dad is 80 and recently diagnosed with mds. He had been anemic for quite some time before dx and was on the arnesp shots for almost 2 years with not much success. finally his dr sent him to hemo/oncologist towards the end of Feb. they did the bmb that day. 2 weeks later when we took him for results his platelets went from 70k down to 24k, so that moved him from biopsy intermediate 1 to high risk. Since Dec he has had over 20 units of blood. so far no platlets.

CDChilds

Tue Jun 15, 2010, 09:30 AM

Hi everyone,

I got down on my knees and prayed last night. I prayed for the strength and guidence on how to cope with my son's illness. I woke up this morning and wala! I found an e-mail in my box about your wonderful marrowforums.

My son Gage was Dx with AA when he was three years old. He is now almost 13 years. He's had two rounds of ATG since his Dx. He's never been in remission yet, but I'm still hoping. Currently his counts are: HMO 7.2, PLT 26, WBC 2.3, ANC 643.

I'm looking forward to everyones posts. This is exactly the strength and guidence that I need. Thank you.

CDChilds

Al's Wife

Tue Jun 15, 2010, 01:12 PM

CDChilds,

Though I too am new to this forum, I welcome you. I can't imagine how difficult it has been for you to deal with your son's problems, but your post definitely shows you know the right place to go for strength! God is carrying a lot of us these days.
My husband was recently diagnosed with myelodysplasia so I am just now getting acquainted with the medical terms associated with blood disorders.
You and your son are in my thoughts and prayers.
God bless,

Linda

Marie P.

Mon Sep 6, 2010, 04:01 PM

Hello, everybody! I'm newly dx with MDS. I was used to live- very well- with CLL (chronic lymphocytic leukaemia) for 15 yrs... quite a picnic compared with what awaits me with MDS! My MDS is chemo related... The treatment for CLL was Fludara-chlorambucil-Rituxan... which works well, except that about 5 to 7 % of the patients who receive this chemo treatment will develop a MDS. I'm among them!
Is anyone aware of other similar cases? The classification of my MDS would be RAEB-1, with no chromosomal abnormalities. I'm totally new with the MDS vocabulary...
Of course, the great question: what awaits me now?

ldupbeat

Thu Sep 23, 2010, 06:53 PM

I haven't been diagnosed with MDS so far, but the oncologist/hemotologist said the only way to find out for sure if I even have it is to do a BMB. I don't want to have one if my blood tests are bad enough. I have had a history for years of increased MCV, but lately it is worse and other blood abnormalities are seen although no anemia. Does anyone have any ideas compared to what their experience has been if my tests look like I should go ahead with the BMB? My abnormal results are: MCV 117, MCH 42, RDW 35.5, Neutriphils 40, Monocytes 15, anisocytosis 3+, macrocytes 3+ and teardrop cells 1+. The last three and monocyte increase are new. I'm really want a diagnoses but I don't want to do a BMB if I don't need to. I hear they are very painful.

Chirley

Thu Sep 23, 2010, 08:41 PM

Hi, I think it's best to take your doctors advice. I would certainly want a definite diagnosis with those blood counts.

good luck.

Chirley

ldupbeat

Thu Sep 23, 2010, 09:59 PM

Thank you for the advice. I think I probably should get the BMB and get it over with. I wish I could see other peoples blood tests prior to their diagnosis and see what they were. Anyway, thank you.:)

Marlene

Fri Sep 24, 2010, 07:56 AM

Make sure they rule out B12, folate, B6 and iron deficiencies first. B12 should be in the mid to upper range of normal. They should also check homocystiene and MMA levels.

ldupbeat

Fri Sep 24, 2010, 05:03 PM

I was told my B12, Folate, and iron are normal. I will need to check on homocystiene and MMA levels are. I don't know them, but I can look them up. I know that two years ago, my B12 was on the low end of normal and the Dr. gave me B12 shots. The blood tests improved for the next 6 month check, but then back to abnormal. He recommended a BMB at that time, but I didnt feel like my blood test results were bad enough so I chose not to get it, he was ok with me waiting. This is the highest its been for anisocytosis and macrocytosis and the first for Teardrop cells. My old Dr left town and now the new one says he thinks it "isn't an emergency" but that a BMB may tell him what is going on.

lindy

Wed Nov 24, 2010, 09:26 PM

First I would like to thank the owner, Neil & administrators, Ruth & Vince for this forum.:)

There is so much info here & I still need time to go through them.

I have a low platelet condition since Oct 09. I lost my mother to MDS/AML many years ago when we didn't know what this illness was all about (then her doctor didn't even use the term MDS). It hit her so suddenly & swiftly.:(

So now I'm fearful about my condition & hope to learn more & prepare myself better.

Wishing all better health!

Lindy

kellym

Thu Jan 20, 2011, 06:05 PM

hello, I'm new to the site, I've never used a forum before so please be patient :)
my daughter ella who is 5 had just been diagnosed with aa in dec 2010, it's something I'd never heard of before so I have so many questions so it's great to find a site like this

Neil Cuadra

Fri Jan 21, 2011, 11:47 AM

Hi Kelly. I'm sorry you need to be at Marrowforums but I hope we can help you help Ella. Aplastic anemia is serious but doctors have great success rates treating pediatric patients. The patients and caregivers in these forums, some of them in the U.K., are very willing to share what they know.

You can look through the AA forum and the Pediatrics forum and you can ask your own questions.

If you need help with the forum system you can look through the Frequently-Asked Questions pages or post questions in the Site Comments forum.

kellym

Sun Jan 23, 2011, 11:37 AM

thankyou for your website, it's been such a help Reading it, learning more and talking to people.

rukalukavina

Wed Mar 9, 2011, 07:07 PM

Hello everybody!
I'm from Serbia. Still can't embrace the fact that this is happening to me...
Things that keep me going are music and stubbornness to live ;)

squirrellypoo

Thu Mar 10, 2011, 09:52 AM

Hello everybody!
I'm from Serbia. Still can't embrace the fact that this is happening to me...
Things that keep me going are music and stubbornness to live ;)Welcome! I see you're from Novi Sad! We used to fly over for the EXIT festival every year a few years back and we loved seeing the city and the surrounding hills just as much as the festival itself. :)

Stubbornness is an excellent quality for fighting these diseases!

ccpat

Sat Apr 2, 2011, 03:50 PM

Greetings, My husband has been scheduled for his non-myeloblative transplant at Stanford University Hospital on May 15. Gulp. He is a retired physician, has always been healthy, and for over 2 years, has been fighting this beast. His blood work suggests that now is the time for the transplant. His sister and brother are both "perfect" matches, so now it's up to Stanford to choose. We have to move there (the highest rent in the nation!) for about 4 months, since we live 3 hours away. This is our life's biggest hurdle, and we are prepared to give it our mightiest fight. My dad had RA 16 years ago and died within 6 months of diagnosis. We can realize the progress made over the last 16 years, and are hoping against most odds that we'll see much more progress in the next 16 years!!

Neil Cuadra

Sat Apr 2, 2011, 04:21 PM

Pat,

I wish you and Ron the best of luck. The rent may be high but Stanford is a great place for treatment. I'm surprised that they are waiting another 6 weeks before the mini-transplant when the course has been set and donors are available.

Congratulations on the sibling match. Having two sibling matches is extra insurance. They might choose his brother over his sister if she has had children, but I'm not sure what other factors they consider if two equally matched donors are available. Perhaps you could let us know once they decide, since other forum members may wonder about the same thing.

Unlike many patients who don't understand what's happening to them and how drugs can help (or hurt), Ron's medical experience gives you an edge. His otherwise good health is another positive. There are ups and downs for just about every patient, but I hope he sails through the transplant with minimal problems.

I guess after 2 years you've accepted the apparent coincidence of both your father and husband having the same rare syndrome, but that's rather shocking to hear. You are right about the progress over the years. My wife survived her transplant for MDS/RA 12 years ago and the procedures are much more refined and the success rates higher now.

ccpat

Mon Apr 4, 2011, 10:20 AM

Neil, Thanks for your response! Took me awhile to find it, since I'm "new" at this forum thing! Amazing, and wonderful that your wife survived transplant 12 years ago!!! That gives us courage! Having the "medical edge" is helpful, that's for sure, but doesn't always...help! Don't know why they scheduled Ron 6 weeks out, but doubt that we could get everything squared away much before then. Ron feels good even with Hgb dropping from 9 to 7 in about 3 weeks after tx. Platelets are now dropping faster, also--down to 23 last week. Thanks for this site and your encouragement.
Pat

Neil Cuadra

Mon Apr 4, 2011, 11:59 AM

Neil, Thanks for your response! Took me awhile to find it, since I'm "new" at this forum thing!
Pat,

Here's a forum tip: go to your Options page, find the setting called Default Thread Subscription Mode, and set it to "Instant email notification". Click Save Changes at the bottom of the page. From then on, you'll be "subscribed" to any thread in which you post and you'll receive email if anybody else posts in that thread after you do.

The full details are in the FAQ.

handyman

Tue May 17, 2011, 11:08 AM

Hi I am a new member. I live in the UK and currently receive kidney dialysis three times a week. I have been diagnosed with MDS. Does anybody have any information on vidaza being prescribed to a person on dialysis.

renobabe

Fri Jun 3, 2011, 06:25 PM

well where to start In aug last yr we moved up to NY (Elmira)and we where there for about 3 months all the time it felt like I was In and out of the hospitals.There I had hi b/P 201\110 so in I go I have Type 1 Diabetic now for 25 yrs.well they saw that my blood count was low so they did a bone marrow test Not Fun and found That I have MDS ? ok whats this he said its a bone cancer I thought ok lets add another to the list. well we moved back to florida hubby lost his job and health ins too. well now I have this We are trying to get me on medacade and food stamps . but today they wanted to start me on a shot and it was free but admid fees 152.00 we dont have so We are in a pickle do u guys know about a shot called (ARANESP ). need to read up on this wow I talk to much . ty :confused:

Greg H

Fri Jun 3, 2011, 08:24 PM

Hey Reno!

A good place to start reading is the AA&MDS International website here (http://www.aamds.org/aplastic/disease_information/myelodysplastic_synd/). You can also call them up and ask questions and get them to send you some booklets to read.

Other folks on this list know more about finding resources to help pay for therapy, they will probably chime in with that. MDS treatment is pretty darned expensive, so you'll need to work on the finances.

Aranesp is a synthetic version of a chemical your body makes naturally called EPO. Stick with me here, this gets a bit complicated. Your blood gets cycled through your kidneys to remove waste.Your kidneys have a kind of oxygen sensor in them that keeps track of how much oxygen your blood is carrying. When the oxygen is low, the kidneys crank out EPO, which tells your bone marrow to crank up the production of red blood cells, which carry the oxygen.

Some folks with MDS have kidneys that aren't putting out enough EPO, so Aranesp injections can make up the difference and persuade your bone marrow to make more red blood cells. That can prevent you from having to have transfusions.

Are you having transfusions?

Take care -- and be sure to check out the AA&MDS (http://www.aamds.org/aplastic/disease_information/myelodysplastic_synd/) website.

Greg

renobabe

Sat Jun 4, 2011, 10:54 AM

Hi Greg Thanks or the info I was told in aug of 2010 that I have MDS and I have had 2 trans both 2 qts. lol up in NY and just last month .Fri When I saw Doc he wants to start me on the shots ?. Im scared type 1 diabetic I guess he knows I am so I have read alot yesterday about this shot.not sure .Maybe there is a type 1 out there that can talk to me oh kidneys are small they said too. thanks PS How do I get all that info to put at the bottom of the page .

Greg H

Sat Jun 4, 2011, 12:07 PM

Hey Reno!

You can put all the stuff at the bottom of your messages by looking for the "My Settings" link up near the top of the page. Once you click that, look for "edit signature" in the lefthand menu of the settings page.It really is worth putting in a summary of what you know so far, because it will help other forum members know what's up with you.

I'm not an expert on Aranesp. I have very high natural levels of EPO, which makes me not a good candidate to respond to Aranesp. I did have one shot of it before the docs figured that out and had no ill effects (no response, either).

As I understand it, Aranesp works for about 10-20% of folks with MDS, mostly those who have low EPO levels. But, when it works, it can prevent having to have transfusions. Do you know if you've had your EPO level checked?

Take Care!

Greg

renobabe

Sat Jun 4, 2011, 06:33 PM

Hi New question Im a newbie Im trying to get disabilty SSI can I put down that I have MDS will it help or make it where I will get denided Is it something that I cant work I have 5 other medical cond but Im not sure on this has anyone put this as a medical cond for disabilty. thanks renobabe:confused:

Polly S

Wed Jul 6, 2011, 04:18 PM

Hi,

My name is Polly. I am 30 and I live in the UK and was diagnosed with SAA 7 months ago. I am currently being treated with cyclosporin alone and so far, so good, my neuts and wcc have improved, so fingers crossed. This looks like just the sort of site I have been looking for, thanks!

XXXX

tomcat

Sat Oct 1, 2011, 08:20 AM

I've been reading posts in marrowfoums since mum was diagnosed and decided to join! Haven't come across anyone from Oz yet! I'm having a very different experience with this disease compared to most I've read. Your posts have helped!! Thanks
Tomcat

Neil Cuadra

Sun Oct 2, 2011, 12:26 PM

Haven't come across anyone from Oz yet!
Among the most active Australians here are members Chirley, Julianna, layla g, and Helen Robinson.

You might ask who else is from Oz in the Your Local Area forum or the Australia forum.

brad4d8

Mon Nov 14, 2011, 05:35 PM

Hello all,
I just joined today was diagnosed with MDS about a year and a half ago and have been getting Vidaza treatments since September of 2010. I am looking forward to hearing of others experiences dealing with this syndrome. So far, I've been responding well to the treatments, with only my platelets slightly below normal range after a cycle.
Brad

Christina Dans

Mon Nov 21, 2011, 04:11 PM

Hi! My sister has MDS and I am going to be doing a Peripheral Stem cell collection for her in a few weeks. I am so happy that I am a match for her, but I am still so nervous about the effects of the shots and the procedure itself.

Thanks!

nurseAngie

Wed Feb 8, 2012, 12:10 AM

My mom just started a Vidaza clinical trial for her MDS that is being given orally. She finished the first round about two weeks ago and her counts are now lower than they've ever been. Wbc 0.6, hgb 7.3, platelets 9. She had to get another blood transfusion today and her first platelet transfusion. She's been receiving neupogen for the last five days and her wbcs went down. She has three weeks to get her wbcs up or she's out of the clinical trial. I don't know what to think. Should I be worried?

danny g

Fri Feb 17, 2012, 12:19 AM

Hello,
My name is Danny and I have MDS.

danny g

Fri Feb 17, 2012, 12:25 AM

I have had seven cycles of Vidaza by injection and my bloods have improved every month. Would anybody be able to tell me if I am doing harm by receiving Vidaza when my blood counts are normal?

mausmish

Fri Feb 17, 2012, 05:51 PM

I had Vidaza treatments for 10 months post transplant with normal counts to help prevent relapse. I'm not aware of any potential harm. I also had Vidaza for 11 months pre transplant and my counts were normal for at least half of that period.

danny g

Sat Feb 18, 2012, 07:08 PM

Thank you Mausmish for the info. How are you doing after the transplant? My counts were all normal right after the very first treatment of Vidaza. After seven cycles, the blood counts are still all normal. Does anyone know if there is a way to tell if I don't need Vidaza anymore. My doctor is afraid to reduce the dosage incase my body rejects re-introducing a higher dosage.

mausmish

Sat Feb 18, 2012, 11:19 PM

Danny, I'm doing extemely well, thanks! I'm no expert but I'm of the impression that the Vidaza treatments usually continue until they quit working (or have some contraindicating side effect) or until one has a transplant. I hope others more knowledgeable will correct me if I'm wrong! For me, Vidaza felt like a miracle drug. I'm so happy it was available and worked for me. -Karen

danny g

Sun Feb 19, 2012, 12:32 AM

Hi Karen,

I have terrible side effects from the Vidaza. I have skin breakouts, metal taste in my mouth and a raspy tongue. I just don't feel good after the injections. My injection sites are sore and swollen. Does anyone have the same sideeffects? Has anyone been taken off of Vidaza or has recovered from MDS? Thanks, Danny

Darice

Sun Feb 19, 2012, 11:01 AM

Hi, Danny
I, too, have the understanding that Vidaza continues until it either stops working or you get a transplant. Unfortunately, my husband wound up in the hospital after his first three injections so was unable to continue. :( If it is working to keep your blood counts up, you are winning! :)
Probably your best course of action is to try to alleviate the side effects. I know that many have gotten relief from the skin reaction by putting evening primrose oil on the injection site immediately after the injection and then again every time you think about it. Use the vitamin/supplement gel caps: pierce one end and squeeze it on your skin.
My husband has been encouraged to rinse his mouth/gargle with baking soda & salt in lukewarm water after each of his chemos . . . I don't know whether that would help with the metalic taste and raspy tongue, but give it a try if you haven't already.
I wish my husband had been able to tolerate the Vidaza; his options for dealing with this are limited.

rdavidp

Sun Feb 19, 2012, 06:44 PM

Hello I am David, caretaker of my wife Jaimie. I had a couple of posts before, but never an introduction. We went to the local hospital Jan. 12 due to some breathing issues. Initial blood work showed all three blood cell counts low. By Feb. 1 we had a diagnosis and were sent to John Hopkins the next day. Initial diagnosis was AML, but upon further review it was changed to MDS. My wife is 42 years old. We meet the first time with Dr. Carraway on Feb. 23, so at this time we do not know what treatment option we are going through or even what type and risk level of MDS my wife has. We live in west central Maryland.

Before all of this started, to us MDS stood for Multiple Dachshund Syndrome, which we also suffer from with having three of the little long guys.

Sally C

Sun Feb 19, 2012, 07:10 PM

Hi David,
I am so sorry you and your wife are starting down this road. You don't have much information so all I can say is that if Dr. Carraway isn't an MDS expert or if you have any problems or doubts - or want a second opinion - you are close to one of the best facilities in the nation - the National Institutes of Health in Bethesda. My husband has been a patient of theirs since March of 2009 and I firmly believe they saved his life. The doctors are extremely accessible and the #1 Hematologist in the world - Dr. Neal Young - is over the hematology dept.
A sad welcome to the forums but it's a wonderful place for information and support. There are many very knowledgeable patients/caregivers who regularly post on this site.
Keep us informed and God Bless,
Sally
p.s. Although I have a Jack Russell "terrorist" now, I have had 2 Dachshunds and they are great dogs!

triumphe64

Sun Feb 19, 2012, 07:25 PM

Before all of this started, to us MDS stood for Multiple Dachshund Syndrome, which we also suffer from with having three of the little long guys.Speaking of Dachshunds: I was in Santa Monica last week and I saw a guy walking a piebald dachshund. I had never heard of such a thing. He told me people stop their cars to talk to him about it.:confused:

rdavidp

Sun Feb 19, 2012, 07:27 PM

Speaking of Dachshunds: I was in Santa Monica last week and I saw a guy walking a piebald dachshund. I had never heard of such a thing. He told me people stop their cars to talk to him about it.:confused:

Hehe...we are the family of "non-standard" color dachshunds. We have two piebalds and a brindle.

surabhi

Tue Feb 21, 2012, 01:12 PM

Thank you for welcoming to the site. My mother is a MDS RAEB II patient and i'm on this site to seek some help and information that might help her. I have posted a thread explaining it in detail and hoping for someone to respond with any answers.

All the help is much appreciated.

Many thanks
Bharti

Treemonkey

Sat Apr 7, 2012, 06:38 PM

Hi I am a 47 year old white male who was just diagnosed with MDS-REAB-2 last week. My wc is 3.6 my platlets are 65. The Cancer Doctor is sending me to Hershey Medical Center in Hershey PA on Monday April 9, 2012. I of course am nervous and don't really know what to expect. Could anyone give me an idea of questions to ask the Dr. when I go and what to expect I would really appreciate it.

Neil Cuadra

Sat Apr 7, 2012, 08:20 PM

Hi Treemonkey. The Aplastic Anemia & MDS International Foundation has a page of tips (http://www.aamds.org/support-and-community/standing-up/pillar3) about your doctor visit, along with suggested questions (http://www.aamds.org/questions-ask-your-healthcare-team).

brniii

Wed Apr 18, 2012, 10:10 PM

Hello All! I was diagnosed with AA today and happy to have found this site to research all the questions I have....didn't really ask a lot at the doctor's office today....the name was still sinking in let alone all he was trying to tell me....

PatyV

Fri May 18, 2012, 12:41 PM

Hello, my name is Patricia and I'm a 45 year old, Mexican female suffering from Myelodysplastic Syndrome. I would like to meet people who also have this syndrome and be able to talk and ask them about this condition. I am currently being treated both in my town's regional hospital and at KU Research Hospital with Vidaza. Hopefully I'll be able to meet some people who can help me.

Paty

Christi R

Sun Sep 2, 2012, 02:44 AM

Hi
We are trying to connect my teenage daughter with other teens with AA.

ssdavi71416

Sun Sep 2, 2012, 12:00 PM

Hello

On facebook there is a website named "prayers for Ashley Jade" she is a teen I think 14 yrs. She was diagnosed in dec 2011 and I believe she lives in Central Florida. Best wishes for you and your daughter.

Scott 51 yrs SAA 3/2012 ATG and Cyclosporine. Seeing improvements every week. plate 23, Neut 1.1 and Hem 8.1 RBC tx about once a month

Christi R

Sun Sep 2, 2012, 02:22 PM

Thank you so much! That is exactly what we are looking for.

triumphe64

Sun Sep 2, 2012, 02:38 PM

Also try www.AAMDS.org . They have a peer support network and can probably find a match.

Christi R

Sun Sep 2, 2012, 05:05 PM

Thank you! I'll check it out.

hopeful_AAgirl

Mon Oct 15, 2012, 09:23 AM

Hi! I'm karen claire and I'm 24 yrs. old.

I've been an Aplastic anemia patient for a long time. Aplastic anemia was ruled out to be my medical diagnosis last 2006 and I started multiple blood transfusions even before that which was in the year 2000. My platelet count ranges from 12-24 but now rarely goes up to 24 and only reaches 18. I still receive monthly blood transfusions - when it is necessary.

We went from doctor to doctor and now we are meeting a new doctor since we were discouraged at how our former doctor met us during my check-ups and the hospital we was in wasn't that good compared to the new hospital we're going to.

I had Cyclosporin and Exjade for treatment but had stopped. I got tired of drinking the meds for the past years so I eventually stopped and didn't tell my doctor about it but now, I told my new doctor of it. She told me to do work-ups and stop cyclosporin for now.

I'm not sure what the next thing to do is because I want to stop being dependent with my parents. They're getting old and I still have two siblings who are going to school - an elementary and one in college. I have a boyfriend right now who is still studying. My parents are even against him because they don't trust him that he could take care of me. I'll stop studying again but will continue with distance learning due to my situation and I'm planning to start an online business.

I'm not sure how to be with my parents and continue going out with my boyfriend who exerts efforts to make me feel loved and cared for as he could. I'm not sure how to start a business with my parents around interfering with how I'll manage and decide for things.

Of course, I know they just care and are overprotective of me because of my illness but I feel suffocated most of the times. I don't know what to do.

Bambam

Mon Oct 15, 2012, 08:49 PM

Hello, I was recently diagnosed with MDS Refractory Anemia. This came as a huge shock to me and one which I am still finding difficult to believe as I struggle to learn the language and implications of this disease.
After the bone marrow biopsy, I was informed that chromosome testing would take 4-6 weeks. When I rang my Hematologist after 7 weeks, she checked with the Labs and was told it would take 2-3 MONTHS. Does anybody have a similar experience and if so, why would it take so long after I was told a far shorter timeframe? Thank you for your thoughts.

Bambam

Mon Oct 15, 2012, 08:54 PM

Neil Cuadra

Mon Oct 15, 2012, 10:15 PM

Hello, I was recently diagnosed with MDS Refractory Anemia. This came as a huge shock to me and one which I am still finding difficult to believe as I struggle to learn the language and implications of this disease.
Most of us went through the same period of shock and realized that only by learning what was happening to us could we help do anything about it. Like you, my wife was diagnosed with MDS/RA. We were frightened at how serious a disease MDS can be, and only slightly relieved that MDS/RA is at the less-risky end of the MDS scale. Gather all the information you can, including from the Aplastic Anemia & Myelodysplasia Association of Canada (http://www.aamac.ca/), and ask all the questions you want.

After the bone marrow biopsy, I was informed that chromosome testing would take 4-6 weeks. When I rang my Hematologist after 7 weeks, she checked with the Labs and was told it would take 2-3 MONTHS. Does anybody have a similar experience and if so, why would it take so long after I was told a far shorter timeframe? Thank you for your thoughts.
There's a certain amount of time needed to process and analyze the biopsy, so waiting a week or 2 isn't unusual, but the long delays you've been told about sound more like procedural delays. It sounds like your hematologist isn't part of a major treatment center and has to contract out the lab work, or maybe she can get it done only on a monthly cycle. Even then, I can't imagine what could take 3 months. If your hematologist is associated with a treatment center, you might try asking an administrator there about it instead of asking the doctor, or ask to be put in touch with the lab directly. It's awful for them to leave you hanging in the balance for so long, especially if your other lab results indicate that you should begin treatment soon.

Neil Cuadra

Tue Oct 16, 2012, 12:47 AM

Hi! I'm karen claire...

Hi Karen.

Unlike many of the patients we meet here, you are already a long-term survivor despite being young.

Did one doctor say that you have aplastic anemia and another doctor say that you don't? Do you ever have trouble with your white count or just with your platelets and red blood cell count? Have you had a bone marrow biopsy? If so what did the results show?

I hope you find a doctor who will work with you and with whom you feel very comfortable. I'm sure you've heard that you must always tell your doctor about medicine you are taking or not taking, because otherwise they can't give you the appropriate advice. You want a doctor you can be totally honest with. Your doctor can test your iron levels to know whether or not you need to go back to a drug like Exjade. If you need it, take it. If you don't, that's fine, and you'll just need to be tested now and then to see if your iron levels go up again.

From your comments about your parents I think you are a normal 24-year-old. I don't know a lot about the lives of young adults in the Philippines but parents are mostly the same everywhere. Some parents are overprotective of their children as they go through their teens and twenties, and they have to learn to let go. When a child has a disease like aplastic anemia, parents have an even stronger impulse to protect them. But keep in mind that they want what's best for you, and since they've lived longer they've learned things that they can teach you. You can each learn from each other and should respect each other.

You might tell your parents that they don't have to worry about whether or not your boyfriend can take care of you because YOU can take care of yourself. Then you can prove it by telling them what you plan to do about your aplastic anemia: which doctor you are going to work with, what your latest test results mean, how you will decide on the next treatment to use, and so on. Teach your boyfriend about aplastic anemia so he can be part of your team too, and so he can talk about it with your family. Meanwhile, continue to plan your future, whether it's school or a startup business, and talk about that with your family too. If you are confident about managing yourself and about what you want for your future then I think your parents will start believing in it too!

Bambam

Tue Oct 16, 2012, 02:21 PM

Most of us went through the same period of shock and realized that only by learning what was happening to us could we help do anything about it. Like you, my wife was diagnosed with MDS/RA. We were frightened at how serious a disease MDS can be, and only slightly relieved that MDS/RA is at the less-risky end of the MDS scale. Gather all the information you can, including from the Aplastic Anemia & Myelodysplasia Association of Canada (http://www.aamac.ca/), and ask all the questions you want.
Thank you for this. Those are my feelings exactly.:eek:

There's a certain amount of time needed to process and analyze the biopsy, so waiting a week or 2 isn't unusual, but the long delays you've been told about sound more like procedural delays. It sounds like your hematologist isn't part of a major treatment center and has to contract out the lab work, or maybe she can get it done only on a monthly cycle. Even then, I can't imagine what could take 3 months. If your hematologist is associated with a treatment center, you might try asking an administrator there about it instead of asking the doctor, or ask to be put in touch with the lab directly. It's awful for them to leave you hanging in the balance for so long, especially if your other lab results indicate that you should begin treatment soon. My Hematologist is an Assistant Clinical Professor and Clinical Hematologist at Vancouver General Hospital, a large and reputable teaching facility associated with University of BC. Upon your advice, I have today called and asked to know what is the reason for the delay and also whether I can be referred to the MDS Clinic at VGH. I hope I don't offend my Hematologist but it seems there is a well respected Specialist, Dr Tom Neville, in the same unit.
I think my lab results are bad and I have some other troubling symptoms - itchy scalp with pimples in the hair, thinning hair, mild headaches at the top/back of my head, fatigue. However, when I see the lab results of others here, perhaps mine suggest low priority. I have also lost a lot of weight and despite now eating normally, am staying at the low weight - oh if I could have lost that weight before MDSRA!
The Hematologist thinks something else may be going on besides the MDS as she doesn't link those symptoms to the syndrome. I hope not.
Thank you again for your thoughts - it helps to know one is not alone with the scary thoughts that come to mind now and then.

Cam

Sun Oct 21, 2012, 08:46 PM

My name is Cam I am a 39 year old father of two recently diagnosed with MDS. I am lucky in that I live near Jacksonville Florida and can go to the Mayo clinic for treatment. This was found by a fluke when I had a physical in July (my wife made me). Since then I have spent more time in a Doctors office than I have in my first 39 years... I am going to whip this so I can see my two kids graduate HS. Thanks for providing a forum to hear from others.

Ruth Cuadra

Mon Oct 22, 2012, 02:33 AM

Hi, Cam.

When I was first diagnosed I could have made the following statement. Notice any similarities? :)
My name is Ruth I am a 41 year old mother of two recently diagnosed with MDS. I am lucky in that I live near Los Angeles California and can go to the City of Hope clinic for treatment. This was found by a fluke when I had a physical. Since then I have spent more time in a Doctors office than I have in my first 41 years... I am going to whip this so I can see my two kids graduate HS.
Now here's an update: I did whip MDS, my husband and I saw our two kids graduate high school, and then saw them graduate college and start their careers. I'm working full time, finished my Master degree's in 2011, and enjoy seeing where life takes me. I hope you have equal success.

Regards,
Ruth