Some of you look at the blog right away after I write something new, and I try to see where you are. Sometimes those people are in Russia, Germany or the USA. Thank you for your loyalty. The three followers on "Journey to Joy" are my cousin, Debbi, and my sisters. Thank you ladies for your love.
What are people reading? The most commonly read post is the one about Welchol from 2010. Last year and earlier this year, the most common post was the one about "What happens during an Octreoscan?" I think there are more doctors talking about Welchol as a way to combat diarrhea, so patients go online to find out information. Some patients have concerns about Welchol; they ask if it affects their cognitive skills, and if if it affects their heart rate, etc.
I have not had any ill effects that I can put down as being caused by Welchol. At the time I was taking it every day in November 2010, I was in desperate need of stopping diarrhea, so I didn't notice side effects. Now I use Welchol once or twice a week, and don't notice any problems. It does seem to work one hour after I take it, and usually stops all action for 24-30 hours. Once recently, it only held for 10 hours, but that was long enough for me to do what I needed to do that day.
Lately, I have joined the email list for ACOR carcinoid. It's going to help me get more information about other types of scans and treatments. There are not too many new things around, but Vanderbilt Neuroendocrine Center in Nashville, Tennessee has the new scan: 68-Gallium PET/CT. It was the first US facility to get FDA approval to use 68-Gallium to diagnose neuroendocrine tumors. The Gallium scan is also at the University of Iowa.
Next week I am going to be doing more research on the Gallium scan and on PRRT. PRRT is the Peptide Receptor Radionuclide Therapy that is not FDA approved yet. It has been in Europe for a decade. People write about going to Rotterdam or Bad Berka for treatment and getting much better. It has been tested in Houston, Texas for about 2 years. Vanderbilt wants to add it to their Neuroendocrine Center. I am holding on waiting for these procedures to be approved, and hoping they will be approved by time I need them. I am not there yet, but I trust the PRRT will be in the US in two more years. Since I have the tiny tumors that do not show up in Octreoscans, in one more year, I may be ready to go wherever there is a 68-Gallium scan available. Particularly, if my symptoms keep increasing, and no one has seen my tumor since November 2008. Four years would be a long time to go without knowing where the enemy is, and how many of them there are.
The scans are not yet available to the public at Vanderbilt University or Iowa State. It has to do with being approved by the FDA and figuring out costs. During the experimental stage, the expense of doing the scan is paid for by the state or the entity that is paying for the research.
Update 11-14-11 on Gallium-68 Availability:The FDA has 100% approved the Ga 68 scan at both sites, but they would have to give it away. The universities hope the application to the FDA for "cost recovery" will be in place soon, but it is doubtful that will happen soon because of the money involved. When Dr. Woltering asked for cost recovery for treating 135 patients with PRRT at LSU the FDA never allowed it. This is a major problem for individuals trying to do drug development in the USA.
Also, there is a limit to what tumors the Gallium scan can detect. Patients from Australia and Europe are finding that the new scans still don't detect the tumors that are the size of a match head or a pinhead. The smallest tumor a Gallium-68 scan can show is 3mm to 5mm. So my tumors may not show up on those scans, anyway. It doesn't sound like I need to plan a trip across the country any time soon.
So it looks like sometime in 2012 we may get the 68-Gallium PET/CT. I know there are people sicker than I am who need the scans done first. Some people don't know where their primary tumor was; that can impact the type of treatment they get. I hope I don't find out that I have tiny tumors scattered like salt across my liver. That last statement doesn't sound like great faith. Hmm, I think I need some scripture here.
Be anxious for nothing, but in everything by prayer and supplication with thanksgiving make your requests be made known to God. And the peace of God, which surpasses all comprehension, shall guard your minds and your hearts in Christ Jesus...And my God shall supply all your needs according to His riches in glory in Jesus Christ. Now to our God and Father be glory forever and ever. Amen. Philippians 4: 6-7, 19-20.