Hanging in there

Since my Sandostatin injection, I have settled down quite nicely physically. Don't seem to have the same degree of side effects that I have had in the past, which is nice.

Must admit to being a little flat this week emotionally. Must remember to think and live for today and not get too wrapped up in forward thinking.

Thanks to all for the continued support and encouragement!

Monthly Appointment with Dr. Zu

Good appointment with Dr. Zu today.

Zu reviewed scan results from two weeks ago, and reiterated that latest scan shows no tumor growth which is a good thing.

White blood cell count still a bit low, but higher than last month.

Dr. Zu thinks I am doing great.

Had my monthly infusion of Sandostatin as well.

Next appointment is set for May 4th.

Again, thank you for your continued support and encouragement.

Scan Results

Got a message from Dr. Zu today re: my latest CT scan results.

He indicated that my scan showed no change in tumor size which he said is "fine."

The Afinitor / Sandostatin combination is intended to shrink or limit tumor growth, and for my scan to show no change in tumor size is a good sign.

Will find out more when I see Dr. Zu next week for my regular monthly appointment.

Thank you for your continued support and encouragement.

No News on Latest Scan

Hi All,

As of today, Wednesday, March 28, 2012, at noon, I have still not received any news regarding my latest CT scan.

I will keep you posted.

I am feeling great! I anticipate good news!

CT Scan - Assessing Progress of Treatment

Wednesday, March 21: Had CT Scan of my thoracic cavity and abdomen to assess the progress of my treatment. Dr. Zu orders these scans every three months to ascertain the effectiveness of the Afinitor / Sandostatin combination on tumor size and movement. My last scan, in December, showed a 30% reduction in tumor size over the first three months of the treatment.

Procedure is quite simple. I drink about 1000 ml of iodine solution, wait an hour, and then have a scan. An injection is also administered during the scan to show contrast to enhance the image.

Results are read by a radiologist, transcribed, and then sent to Dr. Zu. I should know the results pretty soon.

Think positive thoughts, pray positive prayers.

Isn't it ironic? Don't you think?

My brother, Stephen, who has advocated on my behalf to ensure that I receive the best medical care possible for my condition, informed me that Mass General, the hospital from which we were hoping initially to receive treatment, inquired about my welfare.

The irony, however, is that the Mass General wanted to use a radical surgical intervention to treat me that involved the removal of my pancreas!

Thank God my insurance company rejected my request to be seen at Mass General!

Dr. Zu has me on the most current, up-to-date, and least invasive treatment I can be on!

I am fortunate, for sure!

Update - March 13, 2012

Saw Dr. Zu for monthly appointment on Thursday, March 8. WBC a bit lower than last month, but still within normal range. He believes that WBC may be lower due to cold. Received monthly infusion of Sandostatin.

Next scheduled scan is set for Wednesday, March 21st.

Next scheduled appointment with Dr. Zu is April 5th.

Thank you for your continued encouragement, prayers, and support. I am doing well!

Latest visit to Dr. Zu's - Thursday, 9 February 2012

Good news from Dr. Zu yesterday! White Blood Cell count is back to normal after being down last month.

Got monthly injection - or I guess the correct term is infusion - of Sandostatin yesterday. So far, so good. No significant side effects.

I continue to walk/jog five (5) days a week which has been good for me physically, mentally, and emotionally.

Next scheduled appointment with the Zu Man is March 8th.
He is running the San Dieguito Half Marathon on Sunday. While I did give him some race advice, I cannot be responsible for his performance!

Thanks to all for your continued love and support!

A good week. Since I have been taking Prilosec daily, the pressure and discomfort in my chest which has been a constant since the end of August has dissipated quite a bit. I am sleeping well and am working out at least five - six days a week, thanks in large part to Jim "The Guru" Maxwell, who designed a training program for Christine and me, and Mark Leisinger, who has been helping me regain strength with a pilates regimen.

Still waiting to hear about an appointment with the Loma Linda TSC Clinic. In the meantime, the TSC Alliance has asked me to share my story in their magazine, Perspective, probably for their summer 2012 issue. I will keep you posted.

Next scheduled appointment with Dr. Zu is February 9.

Contact with the Tuberous Sclerosis Alliance

Contacted the Tuberous Sclerosis Alliance this week seeking a TSC expert in San Diego to be on my medical team. Received a call yesterday from Dr. Stephen Ashwal, Director of the TSC Clinic at Loma Linda Medical Center, who is willing to offer support to both Dr. Zu and me regarding Tuberous Sclerosis issues related to my medical condition. Dr. Ashwal will set up a time for me to be seen in the Loma Linda Clinic and will discuss my case with Dr. Zu. He is the closest expert in Southern California. I feel as though this is the last piece of my support network that needed to be put into place. Currently, the Loma Linda Clinic sees about 10 adults with TSC.

Ironically, Dr. Ashwal knows both of my previous pediatric neurologists, Dr. Ira Lott, now at the UC Irvine Medical Center, who first evaluated and diagnosed me with Tuberous Sclerosis back in 1979 at the Massachusetts General Hospital, and Dr. Margaret Baumann, who is still affiliated with MGH.