Aplastic Anemia changing in MDS

[MaryAlisha]

We went to the hematologist today and she said that the last BMB performed on 6-6-08 showed that her Aplastic Anemia is changing into MDS-pre Leukemia. It puts us at a higher need for a transplant according to the dr. THey have narrowed her possible donors down to 2 and are now studing those to see which would be a better choice.

We are also changing to a Nashville doctor b/c my other sister is going to become her primary caregiver. Our New Orleans doctor is contacting the dr this week and should have a visit w/ our new doctor scheduled by next week and also all of our records transferred.

Has anyone experienced this?

[Marlene]

Hi Mary Alisha,

So sorry to hear this news. There are others who have transformed from AA to MDS and have never progressed to AML so it's not an automatic progression. I think alot has to do with the type of MDS also.

Your sister was/is on a white blood growth factor which can effect the cytogenic of the bone marrow. Has her currrent doc taken her off the growth factor yet? I know her counts were up quite a bit on your last post about WBC. You may want to considered asking the new doctor to repeat the Bone Marrow Biopsy once she's been off the the neupogen to see if it settles down or reverts back to AA.



Marlene

[MaryAlisha]

The doctor decreased our dosage of the Leukine to 1/2 of what it was yesterday.

It will be a nice to have a fresh outlook w/ the new doctors and a new opinion on treatment.

Thanks

[Marlene]

I too agree that your sister needs another doctor to look at her case. I would still be concerned about taking the Leukine if her ANC remains above 1.0. JMO though.

Marlene

[MaryAlisha]

What would the leukine do to her w/ an ANC above 1000?

[Marlene]

Basically, and I'm speaking from an AA perspective, an ANC of .5 is the minimum you need to fight off infections. Most docs will pull white blood growth factors as long as a patient can hold an ANC of .7 on their own. All growth factors carry a risk and should only be used to get a patients ANC to a target level. In the case of SAA, it's between .5 and 1.0. John went a very long time with an ANC of .8 - 1.0 and did very well.

Unless there's another compelling reason to continue with it, I would challenge the doctor. As I stated before, there have been cases where cytogenics abnormalities can arise in the bone marrow as a result.

We have been dealing with some level of this disease for six year now and I am a firm believer that if you can do without a drug, the better off you are in the long run. I have found our doctors to take the "less is more" path also.

Again, this is just my opinion, but its worth adressing with the doc. (maybe the new doc). If I find any studies on this I will post them for you to read.

[MaryAlisha]

Her ANC was low before starting the leukine. It was below the 500 level and I had to keep her out of the "public". We ran out of the meds a week ago and missed only a couple days and her ANC dropped to almost 500 that quickly. I think we were without it for like 3 days. My sister will become the primary care giver when she moves and I'm eager to see what the new dr says.

I looked up the transplant dr at the new hospital and he does lots of his research on matched unrelated donor transplants. The gives me alot of hope since that is what we are going to have to do if they feel it's necessary.

[Marlene]

When you stop white blood growth factors you will see anywhere from a 50% - 70% drop in the ANC. That is expected and scarey. So at one point her ANC was 3340 with the growth factor. A 50 % drop would make it 1670 and 70% drop would make it 902. It takes a bit for the body to adjust to not having external growth factors. John's dropped down to 700 for quite a while. White blood cells are the shortest lived of the blood cells lasting for only 3 -4 days in the blood before they move on. When John stopped his white blood cell growth factor, Neupogen, he went from daily shots to 3x week, to 2x week, to 1x week and then stopped completely. So it wasn't so dramatic for him.

I hope her platelets are holding.

Take care....M

[MaryAlisha]

Thanks so much for the answers. She has been on shots for at least 4mths or more. I would have to look at my chart and it's on my work computer. How long did John stay on white and or red blood cell shots?

[Marlene]

He was on daily Neupogen shots for about 4 1/2 months. For the first three of months of this, he had zero white cells. Once his white cells kicked in and his anc count was about 1.5, he went to 3x week for about one month. Then at the six month mark, his white count increased enough that his doc took him down to 2x week. During all of this time (six months), he was fighting bladder issues from the cytoxan (bleeding and virus in the bladder) which would not resolve until his white count was higher. Finally when that cleared we were gonna stop it all together and he came down with shingles so the doc kept him on it till it resolved. So during his first 8 months post treatment he was on Neupogen, but not daily.

For the procrit, he didn't even start it until 20 months post treatment. His doc said his BM needed to be producing some red cells in order for it to work so not until his retic % got up to 1.8%, it wouldn't do a thing for John. We also had his own EPO levels checked and they were well below 500. People who's own EPO level are less than 500 have a greater chance of Procrit working for him. He stayed on procrit for about 1.5 years until we saw that it really wasn't making a difference so he stopped. That was bit unsettling because we watched his red cell drop a bit over two months until his body adjusted and it started to climb again.

I know his doc wanted him off neupogen sooner than later. As you can see, you do need to take into account what is happening along with the WBC. As long as he was fighting something, they kept him on it. Also, John was a very slow responder. His counts were very slow to recover. It took two years for him to be transfusion free.

I hope this helps. I'm sure others can give you their experience with them also. Everyone's will be different I'm sure.

Marlene