maintenance chemo and G-tubes

[Guest guest]

Hi,

My son , 6 diagnosed with Pre B standard ALL on 8-11-07 has been on maintenance for about 8 months and has had several episodes of being hospitalized for low counts and G-tube infections. I was wondering if some I could get some of your experiences while your kids were or are on maintenance. Everytime he gets up to 100% dose within a couple weeks he lands in the hospital. We are actually waiting to be released right now and that is why I am writing this email. The on floor doctor says its better to be on 50% dose through maintenance then to have to stop chemo to recover every few months. One of the doctors even told me that it is not unusual for kids with some kids with down syndrome to never get above 50% dose. I was just wondering if anyone could tell me their experiences. That right there tells me he should probably be on a lower dose.

Connie Gliott

[Guest guest]

Hi, Connie:So sorry to hear about , I know what you're going through.Rita's doctors prefer to find a low dose that works rather than interrupt high doses due to low counts. She went from standard doses to 1/2 to 1/4 and now 1/8 - or 1/2 tab Mercaptopurine every other day - that's just 2 tabs/wk. Normal dose is 2 tabs/day! We thank God she's still in remission despite the low dose.Like you we had multiple admittances for low ANC counts resulting in fevers and infections, etc. facilitated by the "high" dosages of chemo. It took about a year to get the dosage down to 1/8 but that's because we weren't on the ball and trusted the doctors too much - it was our learning experience.One thing does seem apparent. Like you noticed, DS children's bodies are apt to be much more sensitive to chemo than non-DS kids. The other is that

doctors could do a better job of sharing info and research on DS kids so that better treatment could be offered with a shorter learning curve for each child. I'm shocked to find out how much the head child oncologist at my hospital is learning about DS children with ALL through my daughter!Good luck and best regards,S.From: Connie Gliott <conniegliott@...>Subject: [ ] maintenance chemo and G-tubes Date: Tuesday, January 6, 2009, 6:09 PM

Hi,

My son , 6 diagnosed with Pre B standard ALL on 8-11-07 has been on maintenance for about 8 months and has had several episodes of being hospitalized for low counts and G-tube infections. I was wondering if some I could get some of your experiences while your kids were or are on maintenance. Everytime he gets up to 100% dose within a couple weeks he lands in the hospital. We are actually waiting to be released right now and that is why I am writing this email. The on floor doctor says its better to be on 50% dose through maintenance then to have to stop chemo to recover every few months. One of the doctors even told me that it is not unusual for kids with some kids with down syndrome to never get above 50% dose. I was just wondering if anyone could tell me their experiences. That right there tells me he should probably be on a lower dose.

Connie Gliott

[Guest guest]

had lots of those issues til he went on IVIG and til we settled with only increasing oral dosages by one half pill at a time, and never more than one type at a time, alternating. So if his ANC got too high, we'd increase by either 1/2 a 6mp or 1/2 a tiny methotrexate pill. This tinkering helped, and by the last year, we finally hit a dose that more or less did the trick. He never got to more than a 40% dose. The way it was explained to us was that if his ANC is in the target range, that's the goal; it doesn't matter what percent dose gets him there.

BTW, he got a lot of cellulitis around his gtube, usually when ANC crashed, so that was a lot. It always responded well to keflex oral antibiotic. It got very routine for us, but once he was off treatment for a bit, that problem went away.

Beth

[ ] maintenance chemo and G-tubes

Hi,

My son , 6 diagnosed with Pre B standard ALL on 8-11-07 has been on maintenance for about 8 months and has had several episodes of being hospitalized for low counts and G-tube infections. I was wondering if some I could get some of your experiences while your kids were or are on maintenance. Everytime he gets up to 100% dose within a couple weeks he lands in the hospital. We are actually waiting to be released right now and that is why I am writing this email. The on floor doctor says its better to be on 50% dose through maintenance then to have to stop chemo to recover every few months. One of the doctors even told me that it is not unusual for kids with some kids with down syndrome to never get above 50% dose. I was just wondering if anyone could tell me their experiences. That right there tells me he should probably be on a lower dose.

Connie Gliott

[Guest guest]

Hi, Beth:Thanks for sharing - sounds like your has a worse situation than Rita, I'm sorry. We too have found the lower doses work - she's on 1/8 of the standard dose, just 1/2mp every other day now. Counts are bouncing a bit but holding over 900.Best regards, & Eileen S.From: B DeHoff <bdehoff@...>Subject: Re: [ ] maintenance chemo and G-tubes Date: Tuesday, January 6, 2009, 10:53 PM

had lots of those issues til he went on IVIG and til we settled with only increasing oral dosages by one half pill at a time, and never more than one type at a time, alternating. So if his ANC got too high, we'd increase by either 1/2 a 6mp or 1/2 a tiny methotrexate pill. This tinkering helped, and by the last year, we finally hit a dose that more or less did the trick. He never got to more than a 40% dose. The way it was explained to us was that if his ANC is in the target range, that's the goal; it doesn't matter what percent dose gets him there.

BTW, he got a lot of cellulitis around his gtube, usually when ANC crashed, so that was a lot. It always responded well to keflex oral antibiotic. It got very routine for us, but once he was off treatment for a bit, that problem went away.

Beth

[ ] maintenance chemo and G-tubes

Hi,

My son , 6 diagnosed with Pre B standard ALL on 8-11-07 has been on maintenance for about 8 months and has had several episodes of being hospitalized for low counts and G-tube infections. I was wondering if some I could get some of your experiences while your kids were or are on maintenance. Everytime he gets up to 100% dose within a couple weeks he lands in the hospital. We are actually waiting to be released right now and that is why I am writing this email. The on floor doctor says its better to be on 50% dose through maintenance then to have to stop chemo to recover every few months. One of the doctors even told me that it is not unusual for kids with some kids with down syndrome to never get above 50% dose. I was just wondering if anyone could tell me their experiences. That right there tells me he should probably be on a lower dose.

Connie Gliott