I need to understand this disease

[Suzanne]

My mother was diagnosed with MDS about 2 - 3 months ago. Her red blood cell counts were at about 10 and they were just watching and waiting. Today she saw her hem/onc and her counts were at 7. He started her on Aranesp
(sp?) and iron pills 2 times a day. She has to go back in on Monday and get another injection and is pretty confident her counts will come right back up. I guess my question is will she be off the injections once her counts are up or is she on them indefinately? Is this how this disease works, normal one minute and then in bad shape? I guess I need to know what to expect, so any light that can be shed will be greatly appreciated.


Suzanne

[Marlene]

Hi Suzanne,

I can't speak about MDS since our experience is with SAA, however, there are similarities. I assume your mom is iron deficient or very borderline. As you know, iron is key to making red cells. Arenesp is not effective if you are low on iron. You may want to find out what her iron status is and start tracking that also. Arenesp is a growth factor used to stimulate the production of red cells. It's not considered to be a "treatment" for MDS. It more of a supportive therapy like getting transfusions. Arenesp can help keep red cells at a level that's very livable.

If she is low on iron, I would encourge you to find out what her B12, folate, B6 and copper levels are. These are also needed for good blood production and at times of stress, more is needed.

Marlene

[Suzanne]

Her doctor has her taking iron 2 times a day, that just started on Thursday. He asked her if she was taking Iron in a way that he thought we KNEW she was supposed to be taking iron.

My real question is if your hemoglobin is at 7 does that mean it will always be at 7 or worse without intervention or does your body fluctuate it? Does it ever stand a chance of being higher without some form of intervention? I hope I am making sense, I am just trying to understand this disease a little better. Thanks for your help.

[Birgitta-A]

Hi Suzanne,
When your mother has a HGB of 7.0 she can be tired and she can get symptoms from her heart. I think it´s a very good idea to try Aranesp . Many patients respond to Aranesp - specially patients that have a low SerumEPO value (less than 500) before the Aranesp medication is started.

The HGB can fluctuate but not much and a decrease from 10.0 indicates that she needs treatment.
Kind regards
Birgitta-A
69 yo, dx MDS Interm-1 May 2006 with HGB 7.0 and SerumEPO more than 800, transfusion dependent from dx, Desferal 4 days with transfusions for iron overload due to many transfusions, Neupogen 2 injections/week for low white blood cells, asymptomatic

[Zoe's Life]

Suzanne,

I totally agree with Birgitta, the Aranesp is an excellent idea. I do know that hemoglobin counts can jump around, but she is also correct that after dropping from 10 to 7, they are not likely to go back up that high without treatment. Possible, but not very likely. They will monitor her counts at least monthly (more in the beginning) and they can skip a dose if the hemoglobin goes high enough. Personally, I go for the max at 12, but the high end cut off could be lower. The biggest jump in a month I have ever had is 0.9, and that was amazing. I have only seen it once.

One concern I have is the iron. Has her hematologist tested her iron? Most MDS patients don't take iron. I was told absolutely not to because I face the very real possibility of becoming transfusion dependent down the road, and dealing with iron overload. Aranesp does need sufficient iron to work effectively, however, please be sure she really needs it.

Zoe

[Suzanne]

Zoe
When she had the bone marrow biopsy 2 months ago she had almost no iron in her marrow and we just found that out today! I don't know why they didn't give her iron prior to this. She looks SO much better since taking the iron pills and she much better cognitively and can move around a little now where she couldn't at all before it. Her counts were up to 7.90 today so that is a .65 jump from thursday. I am worried about what you mentioned if she needs transfusions down the road. What should I ask her doctor? She has to go back on Monday for another injection.

Thanks for your help!
Suzanne

[Zoe's Life]

Suzanne,

According to my doctor, for some reason which I don't understand, but maybe they do, MDS can cause no iron marrow. Both my BMB's showed no iron marrow, nada, zero, zilch. However, my ferritin and other iron tests (serum iron, TIBC, etc.) are all normal. The first hematologist I saw put me on iron, but when I went to a doctor with much more MDS experience, she immediately took me off it. I wish I understood it better, I have tried researching but have come up with nothing to explain how the MDS can cause no marrow iron. Does anyone understand this?

Zoe

[Suzanne]

Geesh, I hope she has a good doctor...I am kind of worried now. He is out of North Shore/LIJ which is listed as an MDS Center of Excellence and they see many patients. I believe her iron tests didn't come back well, he continues to comment that she has iron issues. Their hope is to get her iron up to where it should be an hopefully taper her Aranesp injections off. I have to admit she is SO MUCH better since taking the iron pills. She couldn't get herself off of a chair on Thursday. What do I ask her doctor?

Oh I forgot to add...he asked if she was craving ice and she has been. Eating it like crazy. He said that is a sign of low iron. Do you know anything about that?

[Chirley]

Hi,

This iron thing is weird. I have NO iron in my bone marrow. I was given an iron infusion (dangerous, because I'm allergic) and then had a repeat bone marrow a couple of weeks later and still NO iron in the marrow.

The doctor also wrote a letter to my GP saying that I didn't have any reticulocyte response to the iron infusion. I was told to never have iron again, just transfusions.

I'm a little concerned because I have had in excess of 60-70 units (too many to remember) of blood but I haven't had an iron level done for about 18 months.

I wonder if there is some iron blocking mechanism that kicks in and prevents iron getting to the marrow.

Just one of lifes' mysteries.

Chirley

[Zoe's Life]

Suzanne,

Please don't allow me to alarm you. I am going off my own experiences. It certainly is possible to have MDS and be iron deficient. Craving ice is common with iron deficiency. Other stranger cravings are common also. Talk about weird With her being at a Center of Excellence, and the fact that the iron is helping, I would go for it. Keep asking questions, knowledge is power (I am quoting someone, but I forget who said it first, sorry). It sounds like her doctor has checked blood levels and has things under control.

Zoe

[Birgitta-A]

Hi Chirley,
I think you should have your ferritin level controlled every time you get a transfusion - it should not be more than 1500 - then you have to start chelating therapy because iron is very toxic for liver, heart and a lot of other organs.
Kind regards
Birgitta-A