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, October 26, 2011

What's Happening in This Blog

I enjoy looking at the statistics for the blog to see what people are reading, and what countries they are from. The USA is the leading county most weeks, but sometimes I will have had several readers from Russia, Germany or Romania, so those countries will have the most views on certain days. I always have some viewers from Canada, but not very often from the UK this year. These are not all the countries, but they include Slovenia, Hungary, Macedonia, India, Brazil, Mexico, Italy Australia, Austria, and China.

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.

Sunday, October 16, 2011

This is Different

I returned to having the Octreotide LAR two days ago, having finished my Octreoscan. I got a 40mg injection, which is the higher dose of Octreotide that I have gotten since July 27.
For the last two nights I have fallen asleep suddenly with my clothes on, face unwashed and teeth unbrushed. Friday night I slept about 10 hours from 11 until 9. Then Saturday night I slept from 7:30 until 6:15.
I don't know what my tumor is dumping into my bloodstream, but I would sure like to know. This morning I just wanted to lie down and let my eyes roll back into my head. However, I knew I would be better with prayer, so I went to church.
NOTE WELL: What was happening here was an overdose of Octreotide. I had to go through this extreme weakness twice before I was at the oncologist at the same time it was happening. He realized that the overdose symptoms of Octreotide are almost the same as the disease itself. The difference is the extreme weakness caused by the drug. I adjusted my dose to one injection of 20mg every two weeks. That is suggested by Dr. Eugene Woltering of LSU, It works well for me.
 I walked into church leaning on my cane and moving my feet about 10 inches at a time. Luckily, I get to park right at the front door because I bring two 80-year-old women to church. I made it to my seat and back out again. I did get some help getting to my chair.
The stuff that carcinoid does is so random. This morning I was much sicker than the 82-year-old lady that rides with me. Then about 4:00 pm I went outside and gardened for 40 minutes. I had to move very carefully, but I wanted to do something to help my daffodils bloom. Then about 9:20 tonight, I could feel the darkness closing in (so to speak). Since 7:00 pm I have been in my nightgown so I could sleep in nightclothes for the first time in 3 days.
This morning I wore my Carcinoid Awareness baseball shirt to church because I felt so bad. I did that on purpose to raise some awareness, but almost no one looks at the shirt. I guess they don't want to look at my chest. At least I pointed it out to three people who asked what was wrong. If I've got to die of this, I'll be one d*** angry dead lady if I can't get at least 100 people to know what it is.

(www.zazzle.com is the place to get shirts and caps printed for most any cause. They offer several things for carcinoid. I got 2 styles of shirts, and a little tote bag. The tote bag is not really strong enough to hold a Bible, but it can hold something smaller.)