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.

Visit to Dr. Zu's - Thursday, January 12, 2012

Had my monthly appointment with Dr. Zu today, Thursday, January 12.

Good news! Dr. Zu reports that the abnormality revealed in my bone scan of 12/23 is not malignant. He believes it is most likely a sclerotic lesion, a manifestation of Tuberous Sclerosis Complex.

Dr. Zu did report that my white blood cell count was a bit low, lower than last month, a side effect of Afinitor. We will have to monitor closely. Should my white blood cell count drop lower, Dr. Zu will lower my dosage of Afinitor from 10 mg. per day to 7.5 mg. per day.

I also received my monthly injection of Sandostatin, a hormone which, in combination with Afinitor, has shown promising clinical results in the treatment of my type of cancer.

Next appointment is scheduled for February 9th.

Mass of Hope

St. Gregory the Great Catholic Church is holding a Mass of Hope for those battling cancer, those surviving cancer, and those impacted by cancer on Tuesday, January 17th at 7:00 p.m. If you have lost someone to cancer, bring a photo to the service. A reception will follow at 8:00 p.m.

Directions:

Take exit 7B to merge onto I-15 N toward Riverside About 11 mins

go 11.4 mi total 15.9 mi

10.

Take exit 17 for Mercy Rd toward Scripps Poway Pkwy

go 0.3 mi total 16.2 mi

11.

Turn right onto Mercy Rd

go 66 ft total 16.2 mi

12.

Continue onto Scripps Poway Pkwy About 3 mins

go 1.5 mi total 17.8 mi

13.

Turn right onto Cypress Canyon Rd About 1 min

go 0.5 mi total 18.3 mi

Show: Text only | Map | Street View

14.

Turn right onto Blue Cypress Dr Destination will be on the left

go 0.1 mi total 18.4 mi

11451 Blue Cypress Dr, San Diego, CA 92131‎

See you there!

Bone Scan - Preliminary Findings

Received a call from my primary care physician today who reviewed the results of my bone scan with me.

They are as follows:

The bone scan I had on December 23 revealed an abnormality on the 10th rib on the right side of my body. The radiologist referred to this finding as "non-specific," although the belief is that this abnormality is a sclerotic, or bone lesion, which is likely a manifestation of Tuberous Sclerosis Complex (TSC). In fact, these sclerotics, or bone lesions, are one of the clinical features used in the diagnosis of TSC.

Interestingly, there was no corresponding abnormality on the CT scan I had in early December. In other words, while the bone scan picked up this bone lesion, the CT scan did not.

My primary care physician stated that the scan showed nothing alarming, but advised me to discuss the scan at greater length with Dr. Zu, my oncologist, when I see him on January 12. I will know more details next week.

Still no news...

As of today, Wednesday, January 4, 2012, no news from Dr. Zu regarding my bone scan.

Next scheduled appointment is set for January 12 during which time I will see Dr. Zu, have blood work, and receive an injection of Sandostatin.

Check back for more details.