Protocol Update

Wishing all of you a very Merry Christmas!!

From: Edwin, sherry, Sherissa, Shaun & Chase

We had a consult with Dr. Freyer today. His 6-mp metabolite blood result came back good which surprised everybody. The result was for last month's 6-mp dose. For the past 2 weeks, his intake went from bad to worse. He does not like his bottle. So, only option now is to force orally. We are unsure of how much he is taking in especially the Methotrexate. We actually have called the clinic several times to ask what we need to do. We also met with the hospital psychologist this morning to see if they can help us with the situation. After the discussion, she knew how much we tried & will speak with Dr. Freyer before we meet him in the afternoon.

Right now, Dr. Freyer wants us to continue his current meds until Jan. 4 when he gets his LP. Chase will be taken out of the clinical trial. They will change the steroids & methotrexate to IV.

As for the daily 6-mp, we will continue to give orally & will check drug level again on the 4th before making any decisions.

12/7 Doctor's Appointment

Hello Everyone. Doctor's Appt. went well. Dr. Freyer is seriously considering changing Chase's protocol. He's concerned on the amount of chemo he took in this month based on what we reported. For the weekly Methotrexate, he missed twice and only took about half on the other weeks. 6-MP was the same. He missed 4 doses out of the 28. The rest of the time he took in about 50% of the dose & some time he drank half now and half after an hour or so. We did not have his lab results during the consult. So, we were not able to discuss the result further .He just ordered for extra blood to check the level of drug. We have to wait for about a week for the result because they have to send to an outside lab.


The main points in discussion were:

1. Dr. Freyer is very concerned and mentioned that we are increasing his chance of relapse if he continue this pattern.

2. Change his protocol. Changing to IV means taking different chemo besides 6-mp because there's no IV version of the drug. He mentioned maybe Cytoxan & Cyclophosphamide.

pros - no more problem with the oral drug
cons - not widely tested yet. But, mentioned that they had some success on this.

2. Put a G-tube in his stomach. He does not prefer this though.



Right now, he wants us to continue with the meds until our next meeting. He will consult with fellow oncologist in CHLA.

Chase's ANC was actually good. 2900. It was higher than last month though. I will update more after the blood result comes back.




Update on Meds:

We gave his Dex, Methotrexate & 6-Mp last night. It was a huge struggle. He was clinching his teeth closed & threw up after several tries. His cheeks got hand marks because we held it tight trying to keep his mouth open. It was that bad. We gave up & decided not to force it in. We added it to the rice drink. But, he did not drink it.