secondary MDS treatment – decitabine

[Mbrio]

Hello, I’m looking for some input regarding decitabine (or other potential treatments) for my mother who was recently DX with secondary, chemotherapy-induced, MDS.

Some background: back in 1994 she had a lumpectomy of a malignant tumor and subsequent radiation therapy. She enjoyed 10 years of being symptom/cancer-free. In 2004-05 her breast cancer had metasticised in her bones. She’d undergone chemo (4 different combinations of; taxol, vinerolbine, taxotere, xeloda) and responded quite well. The cancer had been contained and even diminished over the course of the the past 3+ years. Then, in February of this year, her blood cell numbers were low, which they often were between chemos, however this time they did not come back up which they had done previously with the help of growth factors. Then came a nose-bleed, and then lots of testing… Finally, a secondary MDS diagnosis — quite a shock! Other than the low counts, she’s in pretty good health for now – she just can’t keep her platelets up. Our plan is to get a second opionion from an MDS center of excellence since the Hem-Oc Doctor has declined any drug therapy due to her “advanced” cancer and general condition. She is receiving supportive/transfusion care, but the bump she receives from the platelet transfusions have been somewhat inconsistent – ranging from the low 000’s to as much as 35,000 from one unit. I do understand the Doctor’s reasoning for not giving decitabine, but I am still trying to find out if there’s any help for her.

I would be interested to know if if decitabine can be administered to someone who is; anemic (8.5), has low WBC (0.5-1.0) and low platelets (>10,000)?

Thank you,

[choijk]

Mbrio,
Welcome to the forum. My father is currently on Vidaza. This is is second course (just started last month in March) and he is doing great with no side effects. The only side effect (if you can call it that) is that he has these really ugly looking bruises at the injection sites. He receives Vidaza via IV. If you would like, you can read more about his experience under the topic that says “Starting Vidaza on 02/04/08.”

In response to you requestion, my father receives Vidaza and he is anemic. Although his platelets and wbc’s have not been affected, my father is anemic. His hgb is usually between 6.5 – 8.5, with the median hgb usually somewhere around 7.0.

[jaxem]

mbrio
sounds like what had happened to my wife. you live in minneapolis. go to Fairview Hospital @ Univ. MN. They are the BEST!! And I live in NJ!! They will be able to judge the best treatment for your mom.

[marlene]

There’s an artlicle link at the link below on MD Anderson’s work with this drug you may find useful.

http://forums.marrowforums.org/showthread.php?t=525

[Neil]

Hi Mbrio,
Secondary MDS presents more difficult treatment issues than the “standard variety”. Among other things the damage done to the marrow as a result of the previous chemo complicates matters.
Drugs such as Vidaza and decitibine can be expected to drive counts down before they begin to come up. Some patients are supported by drus such as Procrit, Aranesp and neupogen. A ton of factors to consider. Platelets are more difficult to assess. There are no drugs (today) that will grow platelets. But some patients survive on low platelet levels without severe problems. Depends upon if they display the typical symptoms of low platelets—bleeding, bruising or petechiae. If there are no symptoms there may be ways to boost the reds and whites and manage the platelets.
My platelets have been in the 10,000 range for many years. No symptoms, no transfusions (unless I am having surgery). There is a lot to think about and she needs a doc that is experienced with ite issues she presents.
Have a friend who is between 45 – 50 with secondary MDS. She has been managing her situation quite well. In fact he HGB has been rising while on Aranesp. WBC is low but manageable without any infection problems. Same with plats.
I am in the Mpls area also (Maple Grove). If you want to talk, phone me. 763-420-7774

[Mbrio]

Many thanks to all for sharing your thoughts and helpful information. There’s been no real changes; she’s still receiving trasfusions/supportive care, so we’re trying our best to enjoy this time.

[txnmomma]

Quote:

I would be interested to know if if decitabine can be administered to someone who is; anemic (8.5), has low WBC (0.5-1.0) and low platelets (>10,000)?

Mbrio..

My father is having Dacogen, he just got home 5 days ago from the hospital. This is his 2nd round.

He has LOW platelets [10,000-12,000]
his hemaglobin is low 7-8 and also his
WBC is very low.

hth!!

his platelets did grow.. they are up 2 points now!!

[gj]

Mbrio

I am a 2ndary MDS patient, after 18 months clear from a SCT for MCL, I came to the other side.
Tried one round of Vidaza with no luck. Then went on to Dcaogen. Going to start tx #11 next Monday, altho we did a few treatments at half dose, which helped the blood counts but didn’t keep the blasts down.
I usually drop my WBC into the 1.2 range after treatment. I end up getting blood once or twice between treatments when my RBC will drop to between 8.5 – 8.2. My platelets gives the doc the most fits. A good count for me is in the upper 30’s and doc usually gets me a pint when I hit 10 or lower, so I average 3-4 doses of platelets between treatments.
After this next tx it’s probably time for the dreaded bone marrow biopsy. I usually don’t have much side efect reaction to the Dacogen, but because I began the “uckky” process of Exjade for iron overload from too many blood products.
Hope these thoughts help.
The best
greg

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