Mom recently diagnosed with MDS.

[rkp]

My Mom who is in India was diagnosed with low-risk MDS after a BMB in July 2012.Her Hb at the time of diagnosis was 7.8.
The BMB report said Hypercellular Marrow with Megaloblastic erythropoesis.
Her Cytogenetics report was normal.Her WBC was borderline low and Platelets were normal.She was prescribed Vit B-12 shots which did not improve her Hb at all.
So she was prescribed Aranesp(once every 2 weeks,200mcg) and Prednisolone(40mg/day).After just one dose of aranesp and after taking the steroid for 7days , in her next CBC report, her Hb was 11.4.
I am really thankful to the almighty that my Mom had such a good response to the treatment.
Is it normal to have such a quick response to the treatment in MDS? Is it possible that this is not MDS?
I have one more question: I have all of my mom's reports(scanned).Is it possible to get a second opinion by personal consultation(not online) here in the US although the patient is in India? Do the Doctors here in the US entertain such an approach? If so I would really appreciate any help regarding how it is done.
Thanks and warm regards to everyone on this forum.
-RP

[Birgitta-A]

Hi RP,
Good that your mother has responded! She is receiving a quite high dose of Prednisolone (40mg) and that can increase counts but Prednisolone has to be tapered due to adverse effects. Hope her counts will hold!
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006, supportive therapy with txs, drugs for iron overload and low WBCs until 2010. Thalidomide + Prednisone since 2010 with positive results.

[rkp]

Thanks Brigitta for your reply. I have gone through the other posts in the forum and you have been such a pillar of strength and helped everyone with your knowledgeable inputs.
My Mothers prednisolone dose was reduced to 20mg/day after the improvement in her counts.Hopefully it can be slowly tapered off to a mimimum dose, as she has started having High blood pressure because of the steroid, which is now being controlled by an increased dose of her blood pressure medicine.
Thanks,
-RP

[milliken2]

RP;
Steroid use also causes your own immunity to go down. Earl is on a maintenance dose of 10 mg a day due to his other co-morbidities - and I would like to get him down to 5 - but we will wait and see. It also can interfere with the blood counts.
Briggita is a dear and a wonderful source of information. Don't be afraid to ask the Dr. questions - and use the internet to research. I did go to the AA/MDS site, and they sent me a great info packet. You might want to try that as well. Good luck to you, your Mom and the family.

Beth

[rkp]

Thanks for your reply Beth.
Yes, I am hoping that the steroid dose can be reduced further as it has already started spiking her blood pressure.
Will definitely go through the site you suggested.
Praying for you and Earl.Hope things get better for Earl.
warm regards,
-RP

[triumphe64]

I notice you are in Dallas. You might be interested in attending this Patient and Family Conference on Sept 22. It is being sponsored by the AAMDS organization.

http://friendraising.towercare.com/M...dCode=3V9TIFRW

[Greg H]

Originally Posted by rkp

Is it normal to have such a quick response to the treatment in MDS? Is it possible that this is not MDS?

Hi RP!

Great that your Mom had such a super response. I haven't seen data on response after a single injection of Aranesp. But that drug is much more effective in folks with very low natural EPO. So, if your mother's EPO was quite low, that might explain the quick response.

There is a condition called megaloblastic anemia that has megaloblastic erythropoesis as a key feature and is typically related to B12 and/or folate deficiency. Given that your mother didn't respond to the B12, it seems unlikely that was her problem. Did they give her folate as well?

MDS is a very heterogenous disease -- really a collection of a bunch of different bone marrow failure conditions caused by a bunch of different things. And those diseases can have very different natural histories. So, if your Mom does have MDS, it may be that she has a lower-risk version that will continue to respond well to treatment.

Take care!

Greg

[rkp]

Originally Posted by triumphe64

I notice you are in Dallas. You might be interested in attending this Patient and Family Conference on Sept 22. It is being sponsored by the AAMDS organization.

http://friendraising.towercare.com/M...dCode=3V9TIFRW

Yes, I live in Dallas.Thanks for the information.
I plan to attend that conference next month.

[rkp]

Originally Posted by Greg H

There is a condition called megaloblastic anemia that has megaloblastic erythropoesis as a key feature and is typically related to B12 and/or folate deficiency. Given that your mother didn't respond to the B12, it seems unlikely that was her problem. Did they give her folate as well?
Greg

thanks for your input Greg.
I am not sure if my mother was given folate as well.As my mom is in India, it is very difficult for me to get in touch with her doctor.But will find out in her next visit.
Hopefully as you said my mom will continue to respond to the treatment and her steroid dose can be reduced to a minimum.
Good Luck to you and many thanks.
-RP