On Friday the 13th of November my Daughter was Diagnosed with AML FLT3... She also has Cns and that has been a nightmare. she has currently had 14 LPS with chemo along with her first induction that took her total blast count from 83% to 32%. She has just finished her second round of chemo and the Doctors are wanting to take her straight to BMT. My question is does anybody about persistent CNS ?
I'm so sorry to hear about you're daughter having to battle this fricking disease.I don't know anything about CNS involvement,but I have heard other's on this board who have been sucessfully treated for the Flt3 mutation.If her blast count got knocked down that much atleast that's showing she is not refractory which is good.I'm hoping someone with more knowledge about this matter will chime in to help you out...Sending(((hugs)) you're way.
So sorry to hear you're all having to go through this. My son didn't have CNS involvement from the start but developed it when he relapsed post-BMT. It's more often in AML m4 or m5 that you get CNS involvement (my son had M5), but he didn't have the FLT 3 mutation. I presume they're giving her intra thecal chemo through a spinal tap (methotrexate) to deal with the CNS involvement as well as the normal IV chemo. How do you know the CNS is still involved? Has she had an MRI scan or does she still have blasts in her CNS fluid? Have they found a match for a BMT for your daughter? I know in the States they often give full body irradiation as a part of the conditioning regime prior to a BMT. My son had cranio spinal radiotherapy to deal with his CNS involvement.
Good luck, Beverley
Thank everyone for their thoughts and prayers. She is having her bmb this morning and we are praying for only 5% this time,,, If so she will go bmt. AS far as the blasts in her spinal fluid, there is now a question if they are blasts,,, After she has gone through 14 lumbar punctures with chemo,, which has now prevented her from walking due to the toxins in the chemo. which have damaged her nerves in her legs.. I really thank all of you again for you encouragement
Rob, I'm hoping and praying the BMB shows remission for your daughter! I can't imagine what you must be going through. My daughter was 16 when I was first diagnosed with AML, and it was hard enough for me to see the impact my illness had on her life. I can't even comprehend how much harder it would be to have watched her go through this disease instead of me. We have a lot of FLT3 people here lately, and while that wasn't my chromosomal abnormality, I'm hearing there is a better prognosis for FLT3 these days. So every reason to be hopeful. And a lot of us who've had BMTs here are doing great! I know very little about CNS involvement---do her doctors feel that the nerves in her legs will get better with time? Keep us posted on the BMB results---we'll be crossing our fingers for the best!
Many of our folks have been through CNS involvement but I don't think any have had "persistent" CNS involvement. Sounds like there is now a question as to whether your daughter hs it or not at the moment.
I went straight to BMT (SCT acutally) myself and have done great ever since. I hope your daughter's legs will get better. Mostly I hope she has a clean BMB today.
Please let ue know.
My heart aches for you all. My son was diagnosed with aml , he had just turned 18 and was a senior in highschool so my heart goes out to the young ones. My son had cns involvement but it was not persistent. They did about 7 intrathecals on him with ara-c. It is a difficult journey but from everything i have heard, if a patient is flt3 positive, they need to go straight to transplant because their chance of relapse is so high. I wish you all the best and hope you get some good results today.
Well when the results came back We were told she had attained remission,, They told us that she could go home for a few days,, Since we have been back she now has blast cell back in her spine and 7% in her marrow.. Yesterday the Doctors told us the ara-c has really damaged her nerves in her chest and fear she might go into resp arrest . and to prepare for the worst.......NOT we are now moving Paige to Texas Children in Houston.... Again thank all of you for you prayers and thoughts.
Its been a long road, Paige with taking Nexavar went into remission and was able to have her BMT in July. We were told last week that she has relapsed and the her Doctor here in San Antonio told us there is nothing more that can be done for her. Because is was paralyzed from the waist down for the toxin of the chemo he said that another transplant was not going to happen. I asked about putting her on a case study but was told because of her condition she is not a canidate. This is so hard ,, just can not sit here and not find something out there that could help my child.
God Bless All,