New Member Welcome

[april]

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]

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]

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

[Neil Cuadra]

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.

[sandra]

Originally Posted by Nanny W

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]

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]

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]

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]

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.

Originally Posted by Peter

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]

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]

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]

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.]

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?