dopa results and upcoming excitement

Spoke with Dr. Cloughsey last night regarding the dopa pet scan results. He said that the scan showed an uptake aruond the rim of the cavity, which is inline with what we continually see on the MRI scans. He said uptake can be seen in tumor cells, necrotic tissue and sometimes inflamed areas as well. The uptake is caused by the amount of dopamine being used by certain areas of the brain. From reading the scan, Dr. Cloughsey said that there are aspects of what he sees that are unusual and makes him think it is not tumor cells and does not think that our current treatment should be changed based on this scan. The good news is that the extra swelling we noticed in the MRI and were worried about did not show dopa positive, so that hopefully eliminates the possibility of non-enhancing tumor in that area! There is a possibility that the ring around the cavity could be tumor cells, but they don't appear to be dividing or actively growing. He also mentioned that he has patients that have lived for years with this type of tumor cell that never changes.

Mark's radio interview aired early Sunday morning on K-RTH 101. It was a very inspiring piece and Mark really showed his determination and faith to beat this thing! A star is born! If we end up getting a digital sound bite, I'll send it out.

Well, the LIVESTRONG ride is this coming Sunday! Mark's two sisters are traveling down and preparing to ride with him :) The course is a total of 104 miles around Orange County. Brock and I and the rest of the family will be holding up signs and making lots of noise at the cheering stations. Mark did reach his fund raising goal and has now raised over $15,000 for the Lance Armstrong Foundation!!! His team (Deb, Sharon & Mark) are the 5th highest fund raisers in Southern California!!! As an added bonus, Mark gets an invitation to "Ride for the Roses" with Lance in Austin this October! Way to go!!!

good to go back on chemo + a star is born!

Mark had another blood test yesterday and all of the levels were back up, so he was cleared to start back up on Temodar. For this round, he will take 300mg for 5 days straight and then will be off for 23 days with a few blood tests in between to see how he's holding up. He started last night and felt fine this morning. We also got the dopa pet scheduled for this coming Thursday. It takes more than a day to read, so there probably won't be any results until next week. Also, today Mark is going to record a radio interview about the LIVESTRONG ride! He's going to be speaking about his story and how the ride is inspiring him to LIVESTRONG :) The interview will be recorded at K-Earth 101 and will probably be aired on Sunday...we're going to see if we can get a copy.

What's next:
06/12-16/06 Temodar 300mg + Kytril
06/15/06 DOPA PET SCAN
?? evaluation with neuro-psychologist (Dr. Ingalls)
06/28/06 blood draw
07/?? MRI, meeting at UCLA
08/30/06 blood draw
10/25/06 blood draw
01/10/07 blood draw
02/21/07 blood draw
04/25/07 blood draw

latest scan after vaccine trial

Mark had his last injection of the dendritic cell vaccine on 5/26/06. On 06/07/06, he had a blood draw, MRI and a meeting with the neuro oncology team at UCLA. According to the doctor, the scan looks fine , the cavity still seems to be about the same size and there is no new contrast enhancing areas that show up and appears to be stable; however, there does seem to be an increase of edema (swelling), but doesn\u2019t necessarily mean that there is tumor activity. It could be radiation changes over time, could be swelling from brain remodeling itself, could be related to dendritic cell vaccine, or could possibly be non-enhancing tumor, but they don\u2019t think it is that at this point. Mark and I were a little uncomfortable with this increase in swelling and are planning to have a DOPA PET scan that can highlight tumor cells that can\u2019t be seen in MRIs, to rule out possible non-enhancing tumor activity and just as a precaution. Dr. Liau says that she has seen increased swelling in some dendritic vaccine patients, and getting a DOPA PET scan is a good idea. We're hoping that it means the blood is in that area fighting the cancer cells! The other odd thing we found out in this appointment is that Mark's nutrophil (figher blood cells) count is too low. His overall white count was low 2.4, but his nutrophil count is 1.3, and needs to be above 1.5 before he can be cleared to start up chemo again. So he can\u2019t start temodar until we get it back up. We are revisiting the natural suggestions for boosting counts from Jeanne Wallace (i.e. leafy greens, protein, supplements, etc) to make sure we're doing what we can. He will have a blood test again next week to see if his counts go up. His counts have actually been borderline since the surgery and going on chemo the initial time, which is an indication that we may have trouble on chemo. If the counts go back up, he will only be on 300mg of temodar for 5 days then off for 23. If his counts can't handle that, then we'll probably switch to a lower dose, but extend the period for 14 days on, 14 days off. The last time he took chemo (before vaccine 3 months ago), his body did tolerate the 5/23 dose...so we're going to have to see how things work out. The addition of neurontin seems to have helped seizure activity, so we\u2019ll stay at the dosage we\u2019re currently at for Keppra and Neurontin. If counts go up, we\u2019ll also be on temodar, kytril (nausea) and miralax (constipation). Besides the supplements suggested from Dr. Wallace, Mark is also taking a homeopathic approach (based on studies from Dr. Banerji) and taking Ruta GR.6C, Calcarea Phos and Cuprum Metallicum...the combo has several positive stories backing it on the brain tumor sites and chats.

What's next:
06/12/06 \u2013 blood draw (to check levels for temodar)
?? DOPA PET SCAN
?? evaluation with neuro-psychologist (Dr. Ingalls)

06/28/06 \u2013 blood draw
07/?? MRI, meeting at UCLA
08/30/06 \u2013 blood draw
10/25/06 \u2013 blood draw
01/10/07 \u2013 blood draw
02/21/07 \u2013 blood draw
04/25/07 \u2013 blood draw