[jaxem]

carl
you went through about 42 weeks with the 7 rounds then. any bmb’s in between to check if dacogen was working or not? have you had any regimens of chemo prior other than thalid?

[jaxem]

hi, katie

i guess the doc thinking there is if they’re too similar, his stem cells will remain, and what you want is a little dis-similarity so that the new stem cells kill his remaining stem cells and take over. interesting but i guess a little gvhd can be good. i guess i forgot that your dad was on vidaza, correct? the “E” in “MEC” is for etopiside so i guess he’ll be getting that chemo again. a MUD transplant is from an unrelated donor rather than a sibling.
thanks for asking about my wife. she’s into her 4th week of the 3rd dacogen round. I think the hema want to do a bmb next week to see if it’s working. i’ve got my fingers crossed.

[jaxem]

katie

i wonder why your aunt’s won’t work but another donor’s would??

man, he’s going through a lot now. he’s in a great institution & I’m sure they’ll be doing all that can be done. hang in there!!

[jaxem]

hi, mary

my wife had breast surgery with prophylactic chemo (adriamycin or doxorubicin) & radiation following. after 5 years, her 6 month blood tests started dropping slowly which prompted her oncologist to advise my wife to see a hematologist. she had no symptoms of tiredness and/or sickness like you. it’s rare but secondary mds/leukemia may develop after 5 years, not one or two. your levels aren’t that bad. i would think that you should see a hematologist soon to see what’s going on with your blood & to give you some anxiety relief.

good luck to you in quickly resolving this problem.

[jaxem]

annie

my wife had some recent swelling in her neck glands which the hema thought was viral.

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carl
sorry i missed reading your profile. where are your thoughts about where you go from here?

[jaxem]

as i understand it & am often wrong so don’t write the gospel around it, there are 23 paired human chromosomes (cx). normal cx counts should be a “bisomy” # like a bisomy 8 (totally my wording). if biologists detect trisomy 8, there is one extra cx 8. my wife WAS a pentasomy 8 which means 3 extra cx 8’s were being made by the body. however, from what i’ve read, -5Q deletion means that there’s something missing on the ears or something of the 5th cx. what’s hard to understand personally is that my wife originally had pentasomy 8 (3 extra cx 8’s but following chemo, changed to monosomy 7 or one missing cx 7. ?? again, take this with a grain of salt as it’s my personal understanding of cx’s. i suggest putting “human chromosomes into your browser & read for yourself.

[jaxem]

eve

you are correct; i was thinking hgb

[jaxem]

californiamom

i am really sorry for the loss of your father. this is a terrible, terrible disease!

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maureen & terri

i can just answer for my wife’s hema who states unequivocally that dacogen is not harsher than vidaza; it’s just one doc’s opinion. dacogen goes in via IV, lasts for 6 weeks, you can do it at home, & from what I see on this forum, works for many patients. i’ve only seen one person state that it didn’t work for them although i asked him how many rounds he did and i haven’t heard back from him. you need to do at least 4 rounds (24 weeks). patients like russ are doing dacogen + another drug as a study.

wow, maureen, an rbc count of 2.47? transfusion point is usually 8. how does he make his body work?

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ruth
if the new doc is not discussing exjade, does he really have an iron overload? 20+ transfusions over 24 months is a lot but doesn’t sound like a whole lot to me, however, I’m not a clinician either. maybe someone else on the forum will have a better discussion than me. good luck!

[jaxem]

hi, katie

the M & E might have done some damage to her heart ie reduced the heart’s pumping power called injection fraction (output blood flow divided by the input flow to the heart). going in, an echo done put the fraction at 55%; following the MEC, it was 15-20%. a lot of water built up around the lungs making it difficult for her to breathe & her heart labored. she was put on lasix which removed the water. not sure if the M and/or E, or the adriamycin she had been given following breast cancer surgery did it. the M & E are tough drugs! it brought her blasts down from 18% to 8%. following about 3 months of convalescents, her blasts rose again to 18%. she then had 2 rounds of FLAG therapy (fludaribin, ARA-C & growth drug (neupogen)which reduced the blasts to 5%. still not good enough for a cord transplant, she started on one round of vidaza, then switched to dacogen. she just completed her 3rd round of dacogen.

keep picking my brain; my head is fat enough as it is. good luck & my prayers go with your dad.

[jaxem]

lynette

you’re right!! chemo drugs are tough. my wife was given adriamyocin following breast surgery which caused her mds and i believe caused her ejection fraction to drop from 60% to 25%. she routinely sees a cardiologist along w/ the hematologist who adjusts her drugs (lasix & coreg) accordingly.

katie
good luck w/ your dad. my prayers go with him. feel assured that he is at a great medical institution where my wife will be getting her transplant once she gets into remission.

[jaxem]

I’d worry about white cell issues. how often is he getting a cbc?

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marc

my wife had finished one round of vidaza before going through 2 rounds of dacogen in the hospital. she just completed her 3rd round of dacogen at home with no adverse effects. i advise going through one round in the hospital to determine any issues with the drug. i entered “administration of dacogen” into my browser and came up with the md anderson article. instead of the typical 3 day treatment of 5 hour administration every 8 hours, the md anderson regimen has treatment for 5 days administering for 3 hours every 24 hours. concentration is a bit different. the original 8 hour treatment administers 15 mg/sq meter of body area whereas the daily treatment administers 20 mg. the original will put 15mg x 3 admins/day x 3 days = 135 mg into the body whereas the daily inputs 20 mg x 1 admin/day x 5 days = 100 mg to the body. no toxity issues & same effectivity. i never saw anything about a 1 hour admin, only 3. dacogen rounds are typically done every 6 weeks, not 4. 4 courses of treatment are also typical. yes, it is a LOT less expensive doing it at home than in hospital but i think the 1st round should be done in the hospital.

my wife is being treated by a hema. named Robert Emmons at Temple Univ’s Fox Chase Cancer Center in Philadelphia.

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