Chemo treatment for MDS

[rdavidp]

After several bone marrow biopsies/attempts at biopsies since mid-January, my wife, 42 years old, was diagnosed with MDS-RAEB II (8% blast cells) with auer rods and trisomy on chromosome 8 on March 6. Since the beginning of Feb., my wife has been going to John Hopkins for diagnosis and treatment plan. On March 6, our doctor, Hetty Carraway, called us to give us the diagnosis and that she wanted to start full chemo the following week. We had our usual appointment with Dr. Carraway on March 8, and she gave us some more information and went over the full diagnosis. She said she wanted to treat as if my wife did have full blown AML even though she doesn't. The doctor said my wife is in a very high risk category and is afraid that my wife would progress to AML quickly.

My wife was admitted to Hopkins on March 13, and started chemo the next day. She had three days of daunarubicin and cytarabine. She was then given a few days of rest, and started the next chemo drug yesterday. She is now taking Etoposide for three days. Friday will be the last day. Next will be a bone marrow biopsy March 27, and then just watching her as her blood counts go back up. Right now due to chemo white blood cell count is 520 and neutrophil count is 90. The neutrophil count has been dropping drastically each day since the beginning of this week. She is supposed to be in the hospital for 30 days or so. After that, I am not quite sure what will happen immediately, but the doctor said that we will also be doing an ablative bone marrow transplant in the near future too. My wife was adopted and does not know of any brothers or sisters, but she does have several preliminary matches. I am not sure if the process for confirming those matches has started yet or not.

I am curious if anyone here has gone through induction chemo for MDS and what your experience was.

[Birgitta-A]

Hi rdavidp,
Your wife is going through a very tough treatment for her MDS. Hope her counts will increase and that she will have a complete response before a Stem Cell Transplantation! If you search the archieve you can see what experiences other members have had when they were treated with daunarubicin and cytarabine. I was too old at dx for a SCT and have not tried these drugs.
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006, only supportive therapy until 2010 when I started to take Thalidomide + Prednisone with positive effect.

[Lori Patrick]

Hello. I underwent induction chemo 1-11-11. You can read my caringbridge blog below. I, or my husband or daughter, updated it often. I ended up having 12 days of chemo to get my blasts down enough to head to transplant a few months later.

The treatment is tough. I am, however, here to talk to you about it! Hang in there and I will put your wife in my prayers.

[Debbie W]

My husband had standard induction chemo when his blasts increased to 20%, then had a month or so off before a transplant on 10/1/2010.

When she is discharged be careful about infections, keep moving and build some strength for the next round, that applies to both of you! Not an easy road so use whatever support you can to get through this time.
Best,
Debbie

[rdavidp]

An update:

We are now 10 days past the last day of chemo. Neutrophill count after chemo is now 0. She is getting platlett transfusions every few days and blood transfusion about once a week. Mouth sores developed middle of last week, and after filling a small wastebasket full of hair for three days, I cut her hair real short this past Friday. She had real long, thick red hair. The hair is short and thin now, but it seems that the hair is not falling out as much now. We are still waiting for full results of the bone marrow biopsy a week ago. Very early preliminary results showed no blast cells. The go forward plan is another bone marrow biopsy in a couple of more weeks with most likely maintenance chemo until bone marrow transplant in near future, 6 to 12 months.

One thing I have noticed is that on March 8, our doctor finally diagnosed my wife with MDS, very high risk RAEB-II with 8% blasts with auer rods. The blast cells were coming from white blood cells, and that was crowding out the normal red blood and platelett cells, and genetic test results alone were indicative of AML from the biopsy taken on Feb. 23. When we have daily rounds with the doctor, the word leukemia is being used instead of MDS since starting inpatient chemo a few days after our diagnosis and treatment plan on March 8. Maybe the doctor feels that even though less than 20% blast cells, with the genetic test results and other factors, diagnosis of high risk RAEB-II MDS versus AML does not really matter, and might as well call it leukemia?