Need Info urgently

[Irum A]

Hi, I'm Irum
My Dad is 65yrs of age and he has been diagnosed for MDS about 3 months back. He was having low blood counts for last 2 years almost and at that time the doctors diagnosed it as a reason of tapeworm. But now after his Bone marrow Aspiration test he has been diagnosed of MDS. his blasts were minimal and the doctor said that its very early stage and nothing to worry coz we'll just monitor first for few months or may be a year or 2 and then depending on condition we can jump to medicines.

I'm worried about my dad coz at start his blood counts were ok and stabled his hgl was 10.5 and remained around 10.. but since last two months his counts dropped immediately to hg 6.5 Wbc 1.98 and platelets to 65000. So the doctor started giving him Eprex(Erythropoetien) Injections on alternate days and he got transfusions as well. Also taking Eprex and transfussions his blood counts are still dropping....??? i Dont know why??? his last count was taken yesterday where his hg 5.4, wbc also low but platelets at 100000.
Now i'm confused that is his disease is converting into AML or Autoimmune or pure red cell anemia??????
Can anyone of you help me with this???

[Greg H]

Hi Irum!

Sorry to hear about your Dad. I also have lower-risk MDS.

Synthetic EPO doesn't work for everyone -- only for a subset of patients who aren't producing enough natural EPO. Normally, if the patient's natural EPO level is 500 or higher, there is a very small chance of response.

In the US, the next drug to try might be Revlimid (lenalidomide), Vidaza (5-azacitadine), or Dacogen (decitabine).

Did the bone marrow biopsy reveal that your father had any irregularities in his chromosomes? That information can sometimes provide a clue about what drug would be best.

Take care!

Greg

[Birgitta-A]

Hi Irum,
We understand that you are worried about your father's low counts. Have you asked his doctor what he is thinking about the decreasing counts ? Do your father have some kind of infection - you know infections can decrease all counts?

When the HGB is low we can get transfusions if EPO drugs don't have any effect due to high EPO initially as Greg wrote. When the white blood cells are low we can get Neupogen or a similar drug. His platelets are not very low 65 or 100 is OK for a MDS patient.

It is important to try to be calm even if it is difficult - you know you will meet patients here who have had this disease for many years and still do well. Look at Kirby Stones personal profile if you want to read about a patient who is fighting his serious disease and is getting very good help from his doctor.
Kind regards
Birgitta-A
72 yo, dx MDS Interm-1 2006, tx dependent from dx. Have received 142 units of packed red blood cells. Have had sepsis with neutrophils 0.1 (the most important of the WBCs). Platelets as low as 22 June 2010. Now stable after one year with low dose Thalidomide + Prednisone.

[Irum A]

Hi,
Thanks alot Greg and Birg.
It's really nice to hear from you about MDS. You asked about chromosome analysis, so my dad had it and doctor said their are no chromosomal abnormalities. All chromosomes are normal. but his blood counts fluctuates alot. Around 5 day's back his counts were HGB 5.8, WBC 2.4, Platelets 100000, etc and he got 2 units transfussed. and yesterday after 5 days follow up Blood CP results are HGB 6.1, WBC 2.0, Platelets 60000. So what my concerns are that even tranfussions dont work for long...??? 5 days back he got 2 units and his counts dropped again in 5 days just HGB increses and that too very minimal.
so I'm in confusion

[Birgitta-A]

Hi Irum,
Good that your father didn't have any chromosome aberrations!

It is not common that HGB decreases so fast in MDS. We have a member here, Chirley, who got a lot of thansfusions some years ago. It turned out that she was bleeding from the intestines and had very low copper. I wonder if your father is loosing blood?
Kind regards
Birgitta-A

[Irum A]

Hi Birgitta,

I hope u are doing well. We have investigated for any inter Bleeding or blood loss but nothing is yet discovered. My dad had both endoscopy and colonoscopy for that but they r clear as well. Today he had bone marrow aspiration again to see if MDS is converting into AML or are there any chromosal abnormalities.
I'm just keeping my fingers crossed and praying that nothing wrong comes out. His reports will come on Monday.
Do pray for him
takecare
will keep you guys informed

[Birgitta-A]

Hi Irum,
Thank you for asking about my health! In fact I have been asymptomatic during five years since dx 2006 except when I had neutropenic fever 2007. Then I woke up shivering so much that I could hardly get dressed and call for a taxi to the hospital. I am very afraid of getting sepsis again.

Good that they look for internal bleedings. You know having many transfusions is not really dangerous but of cause you want to know why your father's HGB is decreasing so fast. Hopefully he still has low risk MDS.
Kind regards
Birgitta-A

[Irum A]

Hi Birgitta,

Dont be afraid of anything. Nothing will happen to you coz there are lots of people praying for u. Just be strong and nothing can harm u.

My dad is fine. we are just waiting for his marrow results. Lets see what come's.

takecare