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  #26  
Old Tue Feb 24, 2009, 09:27 PM
april april is offline
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Location: ON, Canada
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Quick hello & thank you for this site

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.
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April; My dad dx MDS, IPSS intermed_2; started clinical trial ARA-C/Sorafenib Feb 27, bad response stopped after 2nd cycle. Started Vidaza May 18/2009.
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  #27  
Old Tue May 26, 2009, 01:57 PM
Mike M Mike M is offline
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New to the Forum

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
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Mike, age 68, diagnosed 2008, RCMD, risk level 1, treatment-W&W
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  #28  
Old Fri Jun 5, 2009, 02:27 PM
Nanny W Nanny W is offline
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Location: Portage La Prairie,Manitoba,Canada
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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
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Nanny W grandson 9 yrs old diagnosed SAA March 2008-atg-cyclosporin Apr-2008 now dr. recommending MUD bmt.
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  #29  
Old Fri Jun 5, 2009, 06:11 PM
Neil Cuadra Neil Cuadra is offline
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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 if they can connect you with another parent or grandparent through their Peer Support on Call service and also that you ask the Aplastic Anemia & Myelodysplasia Association of Canada about their peer-to-peer support service.
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  #30  
Old Fri Jun 5, 2009, 10:56 PM
sandra sandra is offline
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Quote:
Originally Posted by Nanny W View Post
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
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  #31  
Old Thu Jun 11, 2009, 02:25 PM
mizclaws mizclaws is offline
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Join Date: Jun 2009
Location: dunedin-florida
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hi

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

Last edited by mizclaws : Sat Jun 13, 2009 at 09:35 AM.
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  #32  
Old Mon Sep 21, 2009, 12:17 AM
David M David M is offline
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Location: Fayetteville, TN
Posts: 47
Just Joined...

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!
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David M, reds/whites/platelets slowly declining since 2000; hypocellular bone marrow; diagnosed as unexplained pancytopenia / "non-typical" slow moving AA; still not at treatment-required levels, but getting there.
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  #33  
Old Mon Mar 8, 2010, 03:29 PM
annemvl annemvl is offline
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Location: Phoenix, AZ
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Newly diagnosed Severe AA patient

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!
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  #34  
Old Sat May 22, 2010, 12:02 PM
simplistic007 simplistic007 is offline
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Location: Florida
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MDS

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.

Quote:
Originally Posted by Peter View Post
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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  #35  
Old Sat May 22, 2010, 07:22 PM
bebop bebop is offline
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Location: Maysville Ga
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hi

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.
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  #36  
Old Tue Jun 15, 2010, 10:30 AM
CDChilds CDChilds is offline
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Location: Lorena, Texas
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Red face My son has AA

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
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  #37  
Old Tue Jun 15, 2010, 02:12 PM
Al's Wife Al's Wife is offline
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Location: Jackson, Georgia USA
Posts: 205
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
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  #38  
Old Mon Sep 6, 2010, 05:01 PM
Marie P. Marie P. is offline
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Location: Lac Brome, Quebec, Canada
Posts: 3
Newly diagnosed

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?
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Marie, 64, dx with CLL ( chronic lymphocytic leukaemia) at the age of 50, now dx with chemo-related MDS. Stage RAEB-1
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  #39  
Old Thu Sep 23, 2010, 07:53 PM
ldupbeat ldupbeat is offline
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Question Concerned about a BMB and if it warranted

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.
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  #40  
Old Thu Sep 23, 2010, 09:41 PM
Chirley Chirley is offline
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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
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #41  
Old Thu Sep 23, 2010, 10:59 PM
ldupbeat ldupbeat is offline
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Smile

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.
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  #42  
Old Fri Sep 24, 2010, 08:56 AM
Marlene Marlene is offline
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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.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #43  
Old Fri Sep 24, 2010, 06:03 PM
ldupbeat ldupbeat is offline
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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.
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  #44  
Old Wed Nov 24, 2010, 10:26 PM
lindy lindy is offline
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Posts: 48
newbie here

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
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  #45  
Old Thu Jan 20, 2011, 07:05 PM
kellym kellym is offline
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new member

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
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Kelly, mother of ella aged five; diagnosed dec 2010 with saa. Had rabbit ATg on 23 feb 2011...now waiting
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  #46  
Old Fri Jan 21, 2011, 12:47 PM
Neil Cuadra Neil Cuadra is offline
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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.
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  #47  
Old Sun Jan 23, 2011, 12:37 PM
kellym kellym is offline
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thankyou for your website, it's been such a help Reading it, learning more and talking to people.
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Kelly, mother of ella aged five; diagnosed dec 2010 with saa. Had rabbit ATg on 23 feb 2011...now waiting
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  #48  
Old Wed Mar 9, 2011, 08:07 PM
rukalukavina rukalukavina is offline
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Location: Novi Sad, Serbia
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Talking So, let's break the ice

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
__________________
Diagnosed with AA in 2006; on CyA 2006-2014; treated with rATG in 2009; relapse in march 2011, high dose CyA + tapering - success (all values normal); low values in 2015; discontinued CyA, rATG+CyA December 2015; watch & wait (currently in hospital)
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  #49  
Old Thu Mar 10, 2011, 10:52 AM
squirrellypoo squirrellypoo is offline
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Quote:
Originally Posted by rukalukavina View Post
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!
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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  #50  
Old Sat Apr 2, 2011, 04:50 PM
ccpat ccpat is offline
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Non-myeloblative transplant on deck...

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!!
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Pat, wife of Ron, age 66, dx with RCMD, 12/09. Procrit, Neupogen, 18 rounds of Vidaza. Planned non-myeloblative BMT May 15, 2011.
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