The Last Four Months

Friends, Family, and Colleagues:

It has been four months since my last post. Christine and I have hung in there during this "new normal."

Dr. Zu started me on two drugs in March, temozolomide and capectitabine(referred to as CAPTEM in the literature),  a combination chemotherapy which does have side effects. 

Capectitabine, which I take 14 days a month, causes burning in my hands and feet. See photo:

We have managed to minimize the impact of this side effect by changing  the dosing regimen (same dosage per month, just administered in a different schedule). It is now manageable - still uncomfortable - , but foot and hand burning is limited to 3 - 4 days a month. It is not as acute as it was in the beginning. We feel that we can live with this and return to a "new normal."

The Temozolomide, which I take 5 days a month, causes nausea, but with the use of an anti-emetic, I have had no issues with nausea/vomiting (except the one time I thought I would skip the anti-emetic because it caused a bad headache). Temo makes me very tired and sometimes suppresses my appetite. 

We have managed, and have discovered what our "new normal" is. 

 I continue to receive a monthly injection of Sandostatin.

The good news is that my latest scan shows a reduction in 3 of 4 tumors, while the fourth one (on my pancreas) appears to be stable. 

Dr. Zu wants to continue on this routine until further notice. 

We have isolated the particular genetic mutation (TSC1) which, as of now, cannot be "turned off." Dr. Zu has a patient with endometrial cancer, but with the same mutation, who has responded well to Temsirolimus. This is a promising next step, when we need it. 

Additionally, movement has been made in the treatment of neuroendocrine tumors with the FDA's approval of a PRRT phase III clinical trial. We are keeping our eye on this one.

Now, on to the last 10 days:

I finished out the school year well on June 22.

Late on June 23, Christine and I went to the ER because I had pain in my abdomen.

We were released the morning of the 24th with a pain med and directions to follow up with my primary care physician. The PA  remarked that, aside from  a lot of air, my CT scan was unremarkable.

We returned to the ER on the 24th, this time with a fever and significant pain. This time, a different PA said my CT scan (note: same CT scan was used....ughhh!) revealed that my gallbladder was significantly distended. An ultrasound confirmed this diagnosis . I was admitted to Grossmont Hospital late on the 24th.

I had surgery late on the June 25th. Dr. Sohn, the surgeon, wanted to scope my bile duct at the same time she removed my gallbladder, but because my gallbladder was seriously infected, she did not want to risk it. 

Thus, Dr. Lajin, the GI Guy who has worked on me previously (I actually requested him!),  was consulted and conducted an MRI of my bile duct which revealed nothing unusual. What necessitated this scan was a high bilirubin count, possibly indicative of a blockage, but which ended up being the result of Gilbert's Syndrome, another genetic - but benign - condition.

I swear, there will be chapter written about me in the medical textbooks someday.

Recovery from surgery has been good, although I went straight from surgery into my next round of chemotherapy. This has been tough.

Highlights of our time at Grossmont:

• While in pre-op, a staffer made a personal call and complained that he wasn't going to pay for a pizza someone ordered and was not happy that someone had messed with his XBox. (I am a pretty mellow person, but man, I was pretty POed at this.) Totally unprofessional. Yes, I am going to complain.
• Despite sitting in the designated waiting room, not a single medical person notified Christine of the status of my procedure. They had her phone number. She waited four hours. When I went to pre-op, I was in one room; after surgery, I was in another. Yes, I am going to complain.

The good news:

I have a rock star medical team.

This latest bump is not related to my cancer.

Tough when people recognize you and know you by name. 

We are a bit overwhelmed by this latest development.

But let me say that I have the strongest woman by my side. I ask that you reach out to her during this time. We are both shell shocked right now, but Christine even more so because she has to deal with me - and she does so with grace, beauty, faith and patience.

We thank all who have supported us during this latest medical challenge (ain't a "journey" folks...).

And, hard to believe, July 1 marks five years since my diagnosis!

Love to all,

Andrew and Christine