Update on My Progress

Hi All,

Merry Christmas and Happy New Year to All! Happy Holidays!

I had a CT scan of my chest, pelvis, and abdomen on December 11 and saw Dr. Zu on December 18th.
All is good. CT scan shows no change in tumor size or growth.
WBC is good.
Had my monthly infusion (injection) of Sandostatin
Vitals are good. I am up two pounds!

All is good in the world!

Thank you for your continued support and encouragement!

Next up: Appointment with Dr. Zu on January 15th.

Update on Progress

Saw Dr. Zu last week, Tuesday, 20 November 2012. He acknowledged that I "kicked his butt" in the half marathon! HA!

Good report! I gained three pounds, my vitals look better this month, and my WBC, while still low, is a bit higher this month! Hoo Hoo. Also got my monthly infusion of Sandostatin.

Got a flu shot last week as well.

Last few days have been rough with sore throat, fatigue, and low grade fever, but I am back to work today and am feeling okay.

Thanks for all the well wishes and encouragement.

You guys rock!

What's up next:

Three month CT scan of chest, abdomen, and pelvis to ascertain treatment progress.
Appointment with Dr. Zu on December 18.

Silver Strand Half Marathon

Hi All,

I ran the Silver Strand Half Marathon on Sunday, 11 November 2012. My goal was to run 2:00 or faster without having to dig down. I ran 1:58:54 officially! I beat Dr. Zu by 8 minutes! HA!

I cannot tell you how much I enjoyed my experience. While I didn't run very fast, completing this race after last year was an emotional triumph for me.

Thank you to all who have supported and encouraged me!

Next time, let's do it together!

What's up next:

Blood work on Friday, 16 November.
Monthly appointment and Sandostatin infusion with Dr. Zu on Tuesday, 20 November.

Update on My Progress

I saw Dr. Zu on Tuesday, October 23, for my regular monthly appointment and infusion of Sandostatin.

He reports that my WBC is lower than last month, but still within an acceptable range. I never know how to interpret the numbers, but I know one key number is 88 as opposed to 92 last month. Perhaps someone can explain this to me!

I am also down 2 pounds from last month despite having a voracious appetite. Again, Dr. Zu is not overly concerned given that I have a good appetite, am strong, and am continuing to run.

Next appointment is November 20th.

Up next: Silver Strand Half Marathon. Zu thinks I will beat him! HA!

Thank you for your continued support and encouragement!

Latest News on My Progress

Hi All,

Sorry for the long delay.

I had a CT scan of my chest, abdomen, and pelvis two weeks ago. Good news! Results show no tumor growth! I am doing well. Continuing to run about 4 - 5 days a week. Getting ready to run a half marathon on November 11 with Dr. Zu!

Thanks for your continued support and encouragement.

CT Scan to Assess Treatment

Had a CT scan of my chest, abdomen, and pelvis on Friday, 21 September 2012, to assess progress of my treatment on Afinitor and Sandostatin. Will see Dr. Zu on Tuesday, 25 September 2012, for monthly appointment, for monthly infusion of Sandostatin, and for results of my scan.

Please send positive thoughts my way. And thank your for the positive encouragement.

I am still running five days a week. I feel good, strong, and calmer. Hard to believe where I was one year ago!

Monthly Appointment with Dr. Zu

Had my monthly appointment with Dr. Zu yesterday, 28 August 2012. Blood counts look good, although my WBC is still low and my glucose level is still a bit high, both side effects of the Afinitor. I also received my monthly infusion of Sandostatin which has resulted in the usual soreness at the injection site.

Next appointment is scheduled for 25 September 2012 before which Zu has ordered another follow-up CT scan of chest, abdomen, and pelvis to ascertain the progress of my treatment.

Feeling pretty good these days. Running 5 days per week (most weeks) and sleeping better.

Thank you for your continued support and encouragement.

Update on Treatment Progress

Saw Dr. Zu on 31 July for my monthly appointment.
Doing well. WBC within acceptable range. Received a Sandostatin infusion.

Trip to Massachusetts has left me pretty tired. Not sleeping well has made the last couple of weeks rough. Hope to get back on regular schedule soon.

Thanks for your continued support and encouragement.

Next appointment: 28 August 2012

Update on Treatment Progress

Sorry for the delay in updating my treatment progress.

I saw Dr. Zu last Monday, July 2, for my monthly appointment and infusion of Sandostatin, all of which went well. I have tolerated the Afinitor / Sandostatin combination fairly well. My WBC is still low, but within the normal range, and I have only minor side effects that I am managing the best I can, the most annoying of which are constant stomach issues and itchy feet.

Dr. Zu also reviewed my latest CT scan results and indicated that my last scan (June 27, 2012) looked "good." There has been no change in the size of the tumors on my pancreas and liver, so the Afinitor is doing its job well. We will continue on this treatment.

I have been running regularly without problems for the last six weeks. I am getting out the door about five days per week to run and often walk on the same days to help me recover more quickly. I am pleased about my progress.

Sleep has been rough and inconsistent, and I do feel as though I am suffering from depression now more than anxiety. I am thankful for the support of my beautiful wife, Christine, and of my many friends, and am working through my depression the best I can right now.

I appreciate your prayers and positive thoughts.

I will be traveling to Massachusetts on the 21st of July for a family reunion, as well as to celebrate my sixth wedding anniversary and dad's 86th birthday, both on 22 July.

I do want to add that I have now passed the 1 year mark of my diagnosis - 1 July 2011. With this passage has come a renewed hope for a brighter and healthier year ahead. I will admit that I sometimes find the challenge of living with cancer difficult, of having to live my life 3 months at time - from one scan to another.

I would be remiss if I didn't take this opportunity to thank all of you for being in my life and for helping Christine and me through this difficult year. In my struggles to live with cancer, I have sometimes forgotten how lucky I am to have access to the most advanced treatment, for my health, for my wife, and for you, my many wonderful friends.

All my best for a great summer!

Next appointment with Dr. Zu is Tuesday, July 31th.

CT Scan Today

Had a CT scan of my chest, abdomen, and pelvis today to assess the progress of my treatment. The scan itself takes about ten minutes, but I have to drink an iodine solution an hour before to enhance the imaging which takes longer than the test itself.

I will have results on Monday when I see Dr. Zu for my monthly appointment.

Please send positive thoughts my way.

Thank you.

Monthly Appointment with Dr. Zu

Saw Dr. Zu on Monday, June 4, for my monthly appointment and infusion of Sandostatin.
While my weight is slightly down (3 lbs.) from last month, Dr. Zu says my numbers look good. WBC is still low, but important number is within normal range.

We discussed the possibility of running the Silver Strand Half Marathon together in November. Now I have something to train for.

Up next: CT Scan of chest, abdomen, and pelvis on June 27 to assess treatment progress.

Thanks for the support and encouragement. I am feeling great!

Monthly Infusion (Injection)

Had my monthly infusion (injection) of Sandostatin on Monday.

I have tolerated this treatment fairly well, with the usual soreness at injection site as well as stomach-related issues.

I feel good!

Thank you for your continued support and encouragement.

Next scheduled appointment with Dr. Zu is June 4.

Monthly Appointment with Dr. Zu - Friday, May 4, 2012

Saw Dr. Zu yesterday, Friday, May 4, for my monthly appointment. WBC is good although still lower than normal. My sister, Lisa, who is out for a visit, accompanied me to see the Zu Man. He talked about upcoming changes in record keeping and other medical-related issues with my sister for about 15 minutes. When I went to the treatment center after my meeting with Zu, all the nurses had left for the day so I will have to return Monday for my monthly infusion of Sandostatin.

All is good!

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.

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.