Quote for October

A Prayer for the Ephesians Eph. 3:14-21

For this reason I kneel before the Father, from whom His whole family in heaven derives its name. I pray that out of His glorious riches He may strengthen you with power through His Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge--that you may be filled to the measure of all the fullness of God.

Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen!

Wednesday, July 16, 2014

It's Still Gone!


I want to be clear about what happened to my tumors.

They were there for a biopsy in Dec. 2007 and 2 surgeries in 2008.

They were there after my June 27, 2008 surgery. At first, I had no symptoms of carcinoid, but 2 months after surgery the symptoms came back. I am sure they were carcinoid symptoms because I had the same symptoms in 2008 before and after the endoscopic surgery . Since the symptoms came back, I had the resection of the small intestine on June 27.

By October 2008 my lab tests for Chromogranin A started going up like they were climbing a mountain. They reached 254. Before my resection the value was only 160. In December 2008 I began taking Octreotide. Octreotide reduced the symptoms and made the cancer markers go down to 20-85 over the next few years.

So, why are my tumors gone? I asked Dr. Edward Wolin, "What did we do, drown the tumors in Octreotide?" He believes the resection removed all the tumor. He did not seem to see my Cg A levels in 2008. My oncologist at UC Irvine Medical Center told me that carcinoid can sometimes go into remission.

I know there was a tumor there. I know it is gone. I believe God healed me. He has healed me twice before, and for 6 years He was besieged with prayers for my healing, not so much from me, but from my loved ones. So He healed me again. Amen.

Friday, March 28, 2014

My Cancer is Gone!

My cancer is gone. I went to Cedars-Sinai as I wrote in the last post, and had the new Gallium 68 Dotatate PET/CT done on March 5 and an MRI done a week later. There are no tumors! This new scan can find tumors down to 3 or 4 mm. I don't have any.

Dr. Wolin had to patiently explain to me why my positive tests for Chromagranin A and and Gastrin in the past were not valid. I had been on Nexium,which raises those compounds in the blood. Also, they did  not keep going up and up, as they would if a tumor kept growing.Dr. Wolin did test me for other cancer markers like calcitonin, pancreastatin, and glucagon--which can be made by duodenal carcinoid tumors.

I am still trying to wrap my head around this! I will write more in April.

Thursday, March 6, 2014

I had a GALLIUM-68 Dotatoc PET/CT!

I had the famous Gallium-68 scan done yesterday at UCLA Medical Center, 200 Medical Plaza, Los Angeles. I was able to have it done because I am being cared for by Dr. Edward Wolin of Cedars-Sinai Medical Center. It was quite amazing to have something done that I have read about in www.carcinoid.org for two years. People have flown across oceans to get this done.

In an earlier post I had written about going to Dr. Oberg at Uppsala University Hospital in Uppsala, Sweden. That is not necessary because this scan works the same way. The only difference is in the radioactive element used to make the tumors light up.

When I got to the Nuclear Medicine Center, I filled out paperwork (as usual) and then went back to talk to Dr. Schiepers, the radiologist. He has worked at one of the German treatment centers that does PRRT and has helped over 3000 patients. He is a kind man who explained to me that the Gallium-68 scan can be done in a PET scanner because they used gallium, rather than the indium-111 used in an Octreoscan . I wondered why Octreoscans had a special scanner. So with the new scan, the PET and CT scans are overlapped to give a 3-D image.

The Gallium-68 scan is easy! I had the IV of the radioactive Dotatoc; drank 2 cups of berry flavored barium in an hour; and followed the technician back to the scanner. I got one more cup of barium, and we did the scan. The time for the CT was about 7 minutes, and the PET was about 25 minutes. Piece of cake! I was thanking everyone because I have waited for a scan that would find my tumor since 2009. It seemed to shrink after I began Octreotide treatment.

One new thing I know after going to Dr. Wolin, is that I have been on too much Octreotide! It has caused the weakness and some of the diarrhea I have had. I won't be doing any more rescue shots.

Friday, February 21, 2014

If You have Carcinoid that Began in the Proximal Duodenum, This is for YOU!

Wow! Feb. 18, 2014, I got to see one of the few US doctors who treat only neuroendocrine cancer patients!  Dr. Edward Wolin at the Samuel Oschin Cancer Center at Cedars-Sinai Medical Center, 8700 Beverly Blvd., Los Angeles, CA 90048.

 I learned lots of new stuff and scheduled a definitive scan for March 5: Gallium-68-DOTATATE PET Imaging of Neuroendocrine Tumors.
No more Octreoscans for me. They really can't find a tumor less than 1.5 cm. The Gallium-68 scan is coming to more places in the USA in a couple years, and the Octreoscan will become obsolete.

First, new information: A carcinoid tumor in the proximal duodenum is different from the common ones in the jejunum or ileum. A primary tumor in the very beginning of the small intestine happens to only 1 in one million persons. That is why I can find almost no information on my tumor. There are 3 large distinctions between this foregut tumor and the common midgut tumors:

1. The biology is completely different.
2. They make different hormones. They do not make serotonin and 5-HIAA.
3. They spread differently.

I don't know much about the first or third fact, but I learned a little about the hormones. We don't have to pour pee into orange containers for 24 hours and bring it into the lab!  (In fact, doctors can do a plasma 5-HIAA test for those of you who need one.) Gastrin is a hormone that is made by the duodenal tumors. We began testing mine soon after my diagnosis. Lately it has been normal, but sometimes it goes up. We also need to be tested for Chromogranin A, and other hormones I don't know yet.  I won't know the other lab tests until I have some done.

For all of us noids, Octreotide reduces the production of pancreatic enzymes like lipase and amylase. Therefore we need to be on enzyme supplements, or we have diarrhea because we lack pancreatic enzymes.

Right this minute, I am waiting to hear back from the staff at Cedars-Sinai about scheduling an Eovist MRI. Eovist is the contrast that is injected and it produces a better image than the MRIs I have had in the past. Also, I will come into the Cancer Center for fasting lab work.

I will follow up with you soon.


Wednesday, January 8, 2014

I'm going to Cedars-Sinai Medical Center in February

I have an appointment with Dr. Edward Wolin at Cedars-Sinai on February 18, 2014. After I began producing large amounts of insulin this year, I realized I needed to be with a doctor who has seem many variations of carcinoid cancer. I don't know what the tumors may stimulate next.

Also, I want to see the nutritionist for help with the diet. I have been stronger for 6 weeks since I have been avoiding foods high in tyramine and drinking coconut water daily.

The main items I want to discuss with the doctor are:
1. Will an insulin pump distribute my daily Octreotide better and keep my body more normal?
2. Seeing the nutritionist.
3. Have you treated patients with the original tumor in the proximal duodenum and how did they fare? Do you have any statistics on my cancer? I have never seen anything except that 2% of carcinoid begins in the duodenum. However, none of them ever are foregut tissue like mine were because of being just 1 inch away from the stomach. That should improve my prognosis.
4. Using a different Somatostatin Analog. Will it help to use Lanreotide or another SSA?