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Anniversary of diagnosis

This topic has 7 replies, 5 voices, and was last updated 1 year ago by lisab.

Viewing 8 posts - 1 through 8 (of 8 total)

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October 19, 2022 at 9:35 am #58758

lisab
Participant

This message board is a great source of information. It is great to be able to share our experiences with MDS. It is often sad though too. A friend encouraged me to share my happy news with you.
As of October 17, the day of my diagnosis, I have survived 3 years with del 5q mds. I’m so pleased and thankful for every day I’ve been given.
My doctor often gives me credit for having done so well. I say it is a team effort. Without his diagnosis and guidance as well as the support of his staff I would not be here. I can’t thank them enough for all they have done.

October 19, 2022 at 9:56 am #58760

Joe Catalano
Participant

What treatments have you received and what treatments are you getting now?

October 19, 2022 at 10:30 am #58762

lisab
Participant

Been on lenalidimid along with asa 81, folic acid and b12. Been transfusion free for 3 years in November.
Have had a few minor side effects with lenalidimid small rash that comes and goes as well as some diarrhea off and on.
I’m maintaining a hemoglobin of 137 to 141 which I understand is between 13.7 and 14.1 in US terms.
Hope this helps someone else. As I keep saying, we are all different and what works for me may not work for someone else.

October 20, 2022 at 1:47 pm #58767

Bonnie Shaffer
Participant

Congratulations! That’s wonderful!

October 23, 2022 at 6:51 pm #58768

stacey
Participant

Lisa,

I’m super happy for you. If we lived closer, I’d give you a big hug and take you out for a Starbucks or smoothie to celebrate! It’s great you have a good friend that you can share things with and have found a caring doctor too. Best wishes for many more wonderful years to come,
-Stacey, 5q- MDS

October 24, 2022 at 8:47 am #58770

lisab
Participant

Thanks Bonnie and Stacey
We are pleased. I never heard of MDS until 3 years ago. It has been a learning experience for my family and I. I hope to be around for another 20 to 30 years.
I hope that others are as lucky as I have been.

November 24, 2022 at 2:07 pm #58848

Lucena Nicolas
Participant

Congratulations and it gives me hope. I too have taken the med you mentioned also know as Revlimed. I was diagnosed Feb 7,2022 started taking Revlimed in March and was doing so well until August. My doctor said that my liver was being severely negatively affected and I must stop taking this medicine. Now I am having to have blood transfusion 2 times a month. Hospitalize 2x for infection. I am having a second biopsy this Monday to see if I need a BMT

November 24, 2022 at 4:32 pm #58849

lisab
Participant

Lucena
I have always tried to find sunshine even on the cloudiest days. A good attitude helps too.
My very best wishes go to you. I’m hopefully that you will find the treatment that works for you.
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