Mds to aml

[carrieridge]

Hello. Hubby has been in hospital since Sunday. Took him to emergency room. Turns out he has sepsis. Thankfully it's responding to antibiotics. We were supposed to start Vidazia injections this week due to blasts being noted in his blood test 17%. Bmb biopsy done shows mds is moving toward aml blasts 15 - 20% in marrow now with moderate fibrosis - bmb last done in September did not mention fibrosis at all. Is that a negative prognostic factor? While treating him for sepsis they also started infusions of decogen he finished his 9th infusion last night. I'm supposed to be able to bring him home today. The blast count in his blood is already down to 6% I was under the impression that we could do a dli infusion when it got down to 5% (he had graph failure last year). But his dr just emailed me and said that dli is not an option right now and we had to see how he responded to this "intervention". Choice of word baffles me a little. We go to Ron paquette who is pretty well known in the mds world so I do trust him. However he is leaving ucla in February so I'm stressing out about who will be directing his care now??? Things feel like they are careening out of control. Does decogen work faster than Vidazia? Any experience with one over the other ?

[bailie]

It is pretty routine to go to Vidaza in a situation such as yours. It seems to be a "toss-up" between a DLI, Vidaza and sometimes a combination of both. The DLI will bring on more GVHD usually. Generally very few side effects with the Vidaza. My Dr. was thinking about a DLI but I have responded very well to the Vidaza so I'll be on Vidaza for quite a while. I am in my seventh cycle now following relapse. My last three BMBs have been clear (100% donor cells, no mutations) and I am feeling fine.

[carrieridge]

I realize it's an individual decision but I have to wonder which is best for quality of life. My hubby is very heavily treated hence the reason he has treatment related bone marrow failure. He has +8 in all cells (as of bmb in September still waiting for genetic to come back for bmb last week). Since he lost his graph in August plans were to do dli but we had to wait until he was feeling stronger (dealt with shingles and salmonella poisoning) plus and insurance change. We decided to do at beginning of year but all that ended up doing was giving him time to get closer and closer to aml. So they say no dli not sure if he meant ever I know he said we have to see how he responds to decogen. With my husband he's notorious for responding initially then failing. He's tired plain and simple but he's only 52 but looks and feels like he's in his 80's. We've talk a little but it's an uncomfortable discussion no one wants to admit they've had enough especially since we have kids at home still. He wants to be here for his kids I get that but he's "here" but he's not "here" if u know what I mean which is also very hard on our kids (they are 16, 15 and 12). I guess I'm just tired of all this too this cancer journey started 10 years ago and it's been our live for that long

[Cheryl C]

So sorry to read about your husband's situation. You must be under a lot of stress with trying to support him and care for your children as well. Just want you to know that even though I can't offer any advice, I'm reading your posts and praying that you will find the best care for your husband.

[carrieridge]

I appreciate your kind words. hubby is home and they've tought me how to care for his port and administer his antibiotics. he wasn't feeling well today hopefully tomorrow will be better. they came and drew blood today so I'm interested in seeing where is blast count is now. dr appointment on Wednesday. I'm hoping they will consider doing DLI in the future if they can get his blast count down. I imagine having it in peripheral blood is not good

[Cheryl C]

Great that your husband is home and has love and support available from you and family, even though of course it adds greatly to your daily burden.

Apart from blasts, how are his blood results now, in particular white cells and globulins?

[carrieridge]

His whites were hovering between 1.2 and 2 so that would make him open to infections. Even with the sepsis it was low no fever either but there it was in the blood culture E. coli Not sure what counts are now home health nurse cake yesterday I don't know when I'll get those. I usually get notification on his test results online. We see him onc on Wednesday and they'll draw blood again. He has 9 infusions of Decogen (sp) last week while in hospital so I wound think his count will be starting to go down. Last week when he got admitted his hemo was 6.6 they game him 4 units. Platletes were 50 and whites a little over 1 blast had increased to 17 on the differential (they were 13 the Monday before). On Tuesday the blast went down to 10 then following day 6. On day of discharge blasts were 11. Hemo was 9 platletts 54 and whites 1.8

[Cheryl C]

I have low white cells too but I have few infections - I think that having a diet with minimal processed sugar helps me with that.