Re: Re- introducing myself.

[Guest guest]

You should be very proud of yourself, it takes a lot of persistence to change the Dr's mind. will be in our prayers.

The Talbot'sette <pauletteschu@...> wrote:

Hello just to re-introduce myself. My name is ette and I have 4 girls. is the reason why i'm am interested in this site. She is 17 and was diagnosed with Leukemia in Jan.2003, she has ALL high risk and is on pog 9906. Our experience with it has been quite a roller coaster ride. She is in the maintenance stage but was still having low polys and has become neutropenia quite often. The protocol was always to cut back the 6mp which to me made no sense because I felt it was the methotraxate that should of been cut back seeing how it affects "our" kids more they seem much more sensitive to it. Well we finally convinced them they cut it back 25% along with 25% cut back of the 6mp and so far her counts have stabalized. So if anyone else is experiencing this please try and convince the doctor in cutting back the mtx...Having

her neutropenic every 2 weeks was driving us crazy.Hope everyone is doing fine.take carefrom ette

[Guest guest]

's been having the count roller coaster ride, too, and is currently on 50% dose for both 6mp and mtx. Not sure if he's stabilized, but we recheck his counts every week before giving the mtx, and then reduce it more or skip it if he's neutropenic. He also had to stop getting IV mtx in interim maintenance; he just couldn't handle it. We try to give him as much as we can, but since it makes him so sick and neutropenic, we have to believe that a lower dose is doing just as good a job in keeping leukemia away as a higher dose is doing on less-sensitive kids.

Bethmom to , age 4, diagnosed with high-risk preB ALL 10-29-03, on CCG1961-c, in LTM as of 8-3-04www.caringbridge.org/in/kylefacts

[ ] Re- introducing myself.

Hello just to re-introduce myself. My name is ette and I have 4 girls. is the reason why i'm am interested in this site. She is 17 and was diagnosed with Leukemia in Jan.2003, she has ALL high risk and is on pog 9906. Our experience with it has been quite a roller coaster ride. She is in the maintenance stage but was still having low polys and has become neutropenia quite often. The protocol was always to cut back the 6mp which to me made no sense because I felt it was the methotraxate that should of been cut back seeing how it affects "our" kids more they seem much more sensitive to it. Well we finally convinced them they cut it back 25% along with 25% cut back of the 6mp and so far her counts have stabalized. So if anyone else is experiencing this please try and convince the doctor in cutting back the mtx...Having her neutropenic every 2 weeks was driving us crazy.Hope everyone is doing fine.take carefrom ette

[Guest guest]

Hi ette,

I can't believe I have wrote this three times and I sure hope it goes through this time.

Yes Missy is doing fine she has grown into a wonderful almost adult daughter. She is looking forward to living independently when she gets out of school. If you go to the groups site and look under photos there is a file with Missy's name on it and if you open it there are a few pictures of her.

As for her taking MTX she did take it orally once every other week and on the oppostie weeks she had MTX IM in her leg this was during the maintenance phase of treatment (2 years). She use to get 16 double doses of leucovorin after in infusions of it. It really is nasty stuff but very needed. When she got her LP's every 12 weeks for 2.5 years she had MTX and 2 other drugs. Those weeks she got mouth sores again pretty bad. On the weeks that she had it IM she got mouth sores too

[Guest guest]

Hi,

My daughter is 5 and was on treatment for AML, so I won't be much help.

ette <pauletteschu@...> wrote:

Hello just to re-introduce myself. My name is ette and I have 4 girls. is the reason why i'm am interested in this site. She is 17 and was diagnosed with Leukemia in Jan.2003, she has ALL high risk and is on pog 9906. Our experience with it has been quite a roller coaster ride. She is in the maintenance stage but was still having low polys and has become neutropenia quite often. The protocol was always to cut back the 6mp which to me made no sense because I felt it was the methotraxate that should of been cut back seeing how it affects "our" kids more they seem much more sensitive to it. Well we finally convinced them they cut it back 25% along with 25% cut back of the 6mp and so far her counts have stabalized. So if anyone else is experiencing this please try and convince the doctor in cutting back the mtx...Having

her neutropenic every 2 weeks was driving us crazy.Hope everyone is doing fine.take carefrom ette