Genetics Appointment - Lots of Info

Travis saw Dr. Viskochil this morning for his end of Rapamycin course 4 exam. As before, our morning started at lab for the routine blood draw before the start of the appointment, to the cafeteria for a donut (pink frosting with rainbow sprinkles), and then to his appointment. Travis' energy levels remain low; however, he had fun when we were at a hockey friend's family on Monday evening. Maybe he felt so good on Monday since he spent a good chunk of Sunday watching 1100 miles of racing between the Indy 500 and Coca-Cola 600. ;)

The guy doing the blood draw was really nice and due to Travis being dehydrated had a hard time finding a vein for the draw. After the guy was done, T was off to get his prize for being brave. :) Travis ate his donut pretty quick and asked if he could have a piece of my donut (glazed), so glad to see him eating.

Finishing up the last bites of his donut after checking in for today's appt.

I figured Travis' weight would be down due to the bug, turns out he lost over 1.5 kgs (now 18.9 kg) from his appointment 4 weeks ago. Wow...that's quite a bit, probably most of it was in the last 2 weeks. Travis was glad to see Dr. Viskochil again and we started going over T's lab work from earlier in the morning. The lab called Dr. V to let him know Travis' potassium was low (high probability from the GI bug). Not surprising, other values were also out of whack. Travis' triglycerides were the highest they had ever been at 450, rapamycin/sirolimus levels weren't ready yet.

Next we went over the MRI volumetric analysis from the National Cancer Institute (NCI). For some unknown reason, there was a 3 cm gap between the pelvic and leg MRI images done in April. This would mean the actual volume is probably somewhat bigger. The CD from Jan's MRI didn't have the pelvic region, so there isn't a value from Jan. That being said, if you use the growth curve from Jan-Oct '12 to extrapolate a potential data point for Jan, the Jan-Apr '13 growth curve would be less. This makes some basic assumptions, but the idea is that the tumor growth would be slowing. Praise God!!! Great news!

The person at NCI did a partial volumetric analysis of Travis' left thigh from the MRIs in Oct '12, Jan '13, and Apr '13. Calculating growth measurements of the thigh for this time frame, the growth rate slowed from Jan-Apr '13 compared to Oct '12-Jan '13. This also means the tumor growth would be slowing! There may be some more information about the next clinical trial available to Travis to discuss in the next few appts.

We looked at the MRI images of Travis' femur, the ones from Apr '13 show a change that Dr. Viskochil wants to discuss further with Dr. Randall (orthopedic surgeon). Dr. Viskochil isn't convinced that the tumor is growing into the bone, he doesn't see that happen with tumors. Due to different MRI settings, comparisons between the different images isn't straightforward. Dr. Viskochil will be in contact with Dr. Randall in the next few days (he wasn't able to meet with him today).

Dr. Viskochil measures Travis' thigh circumference and knee circumference at each appointment. Today's measurements were less than last month and that is consistent with T's illness and possible muscle atrophy since he hasn't been really mobile in 2 weeks (similar to when you have a cast). We brought the camera to this appointment and Travis took a pic of Dr. Viskochil at the appointment.

The pic Travis took of Dr. Viskochil

The appointment ended with some answers, some great news regarding the potential slower tumor growth rate, and still big questions to be explored. Dr. Viskochil was hoping to meet with Dr. Randall in person today to discuss Travis' femur issue; however, getting 2 great docs together on clinic days isn't an easy task (read below). Travis did briefly walk for Dr. Viskochil and Dr. Viskochil was able to observe the difficulty Travis has in walking, especially the decrease in the last 2 months.

I took Travis to school after his appointment to see how he would fare since he was feeling better than last week. Travis was a little worn out, but willing to give it a try. The school called me a little less than 1.5 hours after dropping Travis off at school, his teacher noticed T was wiped out. At least he tried for a while.

I received a call from Dr. Viskochil late this afternoon, T's rapamycin/sirolimus level was in. The target range for the drug level is 10-15, Travis' level was very high at 24. We are to go back to the dose he had before (1.7 mL twice a day) and repeat the blood draw in 2 weeks. The current thinking is that this is related to the GI bug and there may be some liver involvement with the medicine. Dr. Viskochil will look into the values and how that all relates. The good news is that they are not stopping the rapamycin altogether. The 2 week wait will allow Travis to recover from the bug and allow the blood work to hopefully resume to a normal level. We'll take a look at things then and reassess IF any dosing changes need to be done.

Dr. Viskochil will get in touch with Dr. Randall regarding the MRI findings, unfortunately due to both having clinic today, they weren't able to meet up. Still more questions to be answered...

If you're still reading...thank you! We learned lots of good info today and some info wasn't as good, but it's good to know. Thank you for all your prayers, thoughts, and support as we go through this journey and Travis has been battling this bug. Thank you God for bringing us to the docs that are the best for Travis, it's been quite a journey to get here and I know we're not done yet.