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Sorry Texas no advise on CNS however, I have heard others hear mention it. Praying for your daughter! Golly only 16! Stay determined and hopefully me bumping this will allow someone to find you! hugs, nicole
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!
Pam
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.
Blessings
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.
Rob, I think you are doing the right thing to keep looking further. I know other parents here can relate. I am praying for Paige---please keep us posted if you can. Paige has all our support here.
Hugs,
Pam
Rob, Best wishes with the move to TX and hope the team there can come up with something for Paige. More prayers are on the way.
- WBF
I'm sorry things have made this turn. How long was she home?
I hope things go well in Houston. When do ya'll leave?
Blessings
Sending prayers your way for hearing something hopeful from Houston. Maybe it is good that her marrow shows remission and less blasts in the spine, that sounds like it is doing something right.
i was 18 when i got diagnosed & i'm 19 now. i'm very sorry about your daughter, i'll be praying for her!
since i'm pretty young, i'll be more than happy to help in an way...been there done that 
Hey I'm so sorry you and your daughter have to go thru this and wishing you all the strength in the world.
Petra
Rob,
Glad to hear you are not taking one team of doctors words for your daughters life.. So glad you are moving on, and I pray the next team can help Paige!! hugs, nicole
Sorry to hear things are not going well. Please let us know when you all get to texas. Prayers have gone up for your daughter.
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,
Rob
Aw, damn it, Rob. I'm so very sorry.
If we can help support you in any way at all, please let us know. We're here.
Blessings
Oh, Rob, I am so sorry. I am thinking of you and your family, and praying for you all. As Tex said, we are here for support, sometimes just being able to let loose and vent helps in a small way.
(((Hugs)))
Pam
Rob, my heart aches for you. This disease is so horrific. I'm praying for a miracle....Linda
I hate what these diseases do to families. I'm sorry...so sorry...
May a miricle happen.
Jim
Rob, I know what you are going through defies words....but remember we are here for you, and will continue to be. Any time you might need to talk. My thoughts are with you and Paige.
(((Hugs)))
Pam
