New & Confused

[mm031285]

Hi Everyone !

I just registered after reading these forums for the last month. I'm not a science person at all so I'll try to explain everything as best as I can ...

Two years ago, my mother's Family Doctor noticed that her Red Blood Cell numbers were going down. She was given medication because the FD thought that it was anemia. It didn't help and my mother was referred to a Hematologist last month. Upon the first appointment, the Hematologist booked a Bone Marrow Biopsy for my mother for the week after.

We received the news this past Wednesday: my mother has MDS.
- IPSS Score is 0
- Blast Count is 1%

In three weeks, we have an appointment with an MDS Specialist.

I'm just so confused, overwhelmed, and scared at the same time.
There's no cure - it was made very clear to me by the Hematologist.

What should I be expecting next ?
Does MDS become Leukemia in 5 years? (I keep going on to Google and I feel that there's so much information out there that it's hard to understand)

Thanks in advance !!

[Birgitta-A]

Hi mm031285,
Your mother probably has a kind of MDS that progresses very slowly. Has she only anemia (low red blood cells)? Are her white blood cells and platelets OK?

How old is she? You know there is really a cure for MDS and that is stem cell transplantation (SCT) but many clinics will only perform a SCT in patients less than about 65 yo.

It is not true that all MDS patients will get acute leukemia in 5 years. Only about 30% of the MDS patients will get that diagnose.

I have met MDS patients that have been treated for their anemia with drugs that stimulate their bone marrow for 20 years. They have high quality of life.
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006. Positive results with Thalidomide + Prednisone.

[slip up 2]

Good Day MM

So very sorry about your Mom, in Toronto we have to Hospitals Princess Margaret & Sunnybrook, both are fantastic with MDS, and both have MDS Clinics.

Also there is Aplastic Anemia & Myelodysplasia (AAMAC), that will help you with concerns and questions.

In the few years i have been associated with MDS, i have found this forum to be the best, everyone on here will go above and beyond to help you and explain anything you want to know.

The MDS the Beacon is also helpful in getting some understanding of this disease.

Many people can live many years with this disease.

Kate

[mm031285]

Thanks, Birgitta and Kate for your warm welcome.

I contacted AAMAC to see if there are any support groups in the city.

My mother is 70 years old and she is only having issues with her red blood cells (white blood cells and platelets are normal).

My mother is a very 'glass is half-empty' person so it's been a challenge to be optimistic.

I'm so glad that I found this forum !
Our appointment with the MDS Specialist is on April 3 so I will keep you posted.

[riccd2001]

Hi mm031...

As you become more familiar with your mom's MDS condition, you'll find it to be quite unique. Nevertheless, we members here - both patients and caregivers - have had a lot of experience in dealing with the "rollercoaster effect" of this complex nasty disease.

If her specialist agrees that a 'watch and wait' approach is best, don't be discouraged. There is still much hope to carry on the fight for many more good days, months, and even years yet to come.

I can only speak for myself and my life since my confirmed MDS dx in early 2008. I've chosen the route of PRBC transfusions and Exjade cheleation. To date over 220 units transfused and still going strong after five years.

BTW it took me about six months to become familiar with most of the jargon and medical terminology we use in this WONDERFUL forum.

[mm031285]

Thanks, Ricc !

I took a notebook to our last appointment with the hematologist, but there was so much to take down.