We were never told to hold oral MTX on the same day the LP was admisnitered until 1 year into LTM. Onc has mentioned that it was okay since my son is only on 25% dose of MTX.

Referring back to e-mail sent by onc, it was mentioned that adjusting chemo dosing is not an exact science. There have been few occasions when exceptions are made to the general rules only because they were not sure about count recovery. While on LTM, chemo will be held (6MP and MTX) if ANC<500 or Pltlt<50K and resume when counts recovered to ANC>750 and Pltlt >75K. VCR and IT MTX are not held for counts. But during LP, Pltls should be > 50K before starting procedure.

We are on ALL0232. Hope this helps.

That is exactly how it works for us, too.

Tonya, in our case we resume at 25% dose once the magic number of ANC (>750) and PLTLT (>75K) is achieved, observe 2 weeks and increase to 50% depending on counts. They try 75% then 100%. At which point his counts would crash. Each child is different. Our onc team decided that Chz could only tolerate up to 50% 6MP and 25% MTX. They would rather have him get chemo consistently (even at 25%) than crash his counts and hold meds for a couple of weeks. Ideally, they want the ANC at the 1500 range. While on steroid, they are okay with a higher ANC. A week after the steroid pulse, his ANC will be in the 900 to 1600 range.

Our first few months of LTM was so nerve wracking. His ANC would dip to low levels at the right dosage only because  he is not getting enough sleep doing HW. To compensate, he must take his daily nap after school for at least an hour. It is working out great so far.

Tonya, since Chz is getting his counts every weekend, we watch his counts like a hawk. If there was a big change (like ANC and PLTLT), we kind of talk about it - what have you done differently in the last few days? And being a senior with lots of HW, just based on our observation, it has always been sleep deprivation as the culprit. I know, this must be the first time you have heard about it. But we do everything we can to face this cancer outside what doctors are looking into. It would not hurt, right? We do not want him to get stressed either. So, those daily naps are really helping.

Hey, Tonya! We would have loved to do counts every 2 weeks as the drive to the hosp takes 40 minutes. The only time they said yes was when Chz was in Switzerland last summer for an exchange program. It is kind of nice doing his counts now every Sunday as they allowed us to do it at a local hosp 7 minutes away. Today's counts was one of those days. ANC 2500 and PLTLT 46, I sent an email telling his onc that based on previous instruction that chemo will be held.  I just got a response to continue all meds at current dose, increase 6MP if ANC stays the same next week and only to stop meds if PLTLT goes below 30. I am very fortunate as his onc fellow is reachable at any time. I dare not call him on his cell or home unless it is an emergency.

Tell Justin to hang in there. The first few months of LTM will be hard as the oncs are trying to adjust his dosage. I feel that once they see a pattern, they will deviate from protocol standards. Dosing is not an exact science. Take care.....

Noel