Dacogen Update for MOM

[Bluyz1966]

Well, those minimal side effects that Mom was having from the first round of Dacogen have escalated. She has had terrible sores on her mouth, tongue and gums for a week now. She can’t eat anything with texture or she bleeds. Her platelets are only 8 and transfusions are still not working for her. She is also developing these sores on her skin. They look like pimples, but, get really big and then get a big dark scab on them. She has several on her legs, and a couple on her face and arms. They don’t itch, but, hurt badly.

Anyone on Dacogen (or other treatments) ever hear of this or see this?

Thanks!!

Linda

[Russ P.]

Linda, See the recent posts under “platelets” or the ones under “dacogen at home”. My platelets have not been as low as your mothers – has she reached passed the nadir after dacogen? Juice from fresh pineapple might raise her PLTs if it isn’t too irritating to her mouth. Does she have any gingivitis? A prescription mouthwash like Peridex might help or using a toothpaste like Colgate Total. For your info, I go to an excellent Hematologist in South Bend, Dr. Taber.
A prayer for your mom.
Russ

[jaxem]

linda
i haven’t heard of anyone not responding to platelet transfusions so this is new to me. everyone is different. dacogen will lower all her cell counts. how often does she go to clinic? my wife goes twice/week and will need platelets every week when she was on her earlier rounds. she’s completing her 6th round now and although platelets are at 10, she rebounds quicker now. I hope the sores clear up quickly for her.

[Mary4Mike]

Linda,

When my husband first tried Dacogen, he also had the terrible mouth sores and a nosebleed. The doctor prescribed Ann Arbor mouthwash. It is made up of nystatin, benadryl, tetracycline, and kaopectate. The instructions said “swish and swallow”. It helped alot. His second round of Dacogen was at a lowered dose and he did not experience the sores or nosebleed, however, he still had the lowered blood counts. (platelets 6) He never had the skin sores.

Hope this helps.

[CMH64]

Linda, have the sores been cultured? Are the scabs black? I am wondering if fungal infection has been ruled out. My hubby had a fungal infection of the skin that sounded similar although his did not involve the mouth. Of course, the two could be unrelated. I am hoping that this is not the Problem. Best of luck to you in fighting this horrible monster, MDS. Cathy

[Bluyz1966]

The sores will be biopsied next Tuesday to rule out Sweet’s Syndrome. But, the scabs are black, yes. That and the sores are growing larger. She has one on her temple that looks terrible. It is like a big blister that is dark red to black in color. I believe that one is bleeding in towards her eye, because her eye is swollen and a little bruised.

Her platelet transfusions have been “rejected” since June. Or at least they have little effect. She has been as low as 4 and not higher than 13 in the past months. But, she seems to tolorate it OK.

Cathy, were your husbands sores painful? Did they come to a small head before they scabbed over? I think the mouth sores and the others are not related. She did not sleep last night because she had to get up and spit out blood every hour or so. It would just pool and clot in her mouth. Sorry to be so detailed, but, I know you have all heard or experienced these horrible things.

Thanks for the feedback.

Linda

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