Quote for October
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!
Tuesday, November 30, 2010
New Information! 3/28/2014 Things have changed in the 3 years since I wrote this. I find my cancer center doesn't take as long to do the Octreoscan now. I had the 360 degree Spect done only at the end of the 24-hour scan. Also, the scanner goes faster, so the length of time is not as long. At Cedars-Sinai in Los Angeles,they do Octreoscans at 4, 24 and 72 hours. But the real news is that this scan is obsolete, and will be replaced by the 68-Gallium Dotatate PET/CT in a year or two in the USA. It is already used in Europe and Asia. I would recommend the newest scan there is and at the largest medical center you can get to.
Today I finished a round of Octreoscans, the nuclear medicine test for carcinoid and other endocrine tumors. Thank you for praying for my composure while I had all my "pictures" taken. I thought I would explain what happens when I go in for a scan. I don't think I've ever seen it spelled out, and I noticed someone found my blog by asking what an Octreoscan was. So I'll explain it from my perspective.
But first, I found a new verse today. I am almost done reading through Romans. This is Romans 15:13. May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit. That is how I want to live: To go on with my life as if I expect to live a "normal lifespan". To hope that I can do most of the things I want to get done and that I will enjoy the time while I am here. Also, to find my greatest joy in knowing Christ Jesus my Lord.
When I go in for an Octreoscan, I have to go off of the LAR (long-acting injection) of Octreotide for 8 weeks. I have to start giving myself the injections of Octreotide Acetate in my belly every 8 hours. Also, three days before the scans I have to stop all Octreotide treatments because it can cause a false positive on the scan. Octreotide automatically goes straight to carcinoid tumors. It attaches to the tumors, and if it is in your body during the scan, then the radioactive Octreotide mixes with it and makes it appear that you have tumors. So all Octreotide has to clear out of your system before your scan.
The Octreoscan is a nuclear medicine test. I usually arrive about 9:15 am and get injected by 10:00 am with the radioactively-labelled Octreotide. I don't have to fast, but I am supposed to drink plenty of water the day before and the day of the first scan. After having 5 Octreoscans I have learned that the "be well-hydrated" is code for "don't be constipated." The staff won't say that before you come in, but a couple of the technicians have told me that I should eat lightly (She suggested I just have soup and salad for supper) and drink lots of water, so that the bowel will be easier for the radiologist to see inside of. It's hard to see any tumors when the bowel is filled up.
Note: I have learned since writing this post that there is another reason for being well-hydrated. It helps to flush the radio-active material out of your body. So you need to be drinking water the day before and the day of the injection. This is the post that is read by someone every day, so I want to have correct information here. 1/11/11
The first set of scans is done 4 hours after the radioactive Octreotide is injected. So I sit and read, shop, have lunch, visit my daughter, etc. Back at the laboratory there are actually three sets of scans to go through. You can listen to a CD player or ipod as long as the headphones are made of plastic because you can attach them to your head, and leave the metal part out of the range of the scanner.
1. The first scan I have is always the Nuclear Gamma Camera. This takes about 1 hour for the full body scan. This does not emit any radiation; you emit the radiation! The camera detects the radiation and it shows up on the computer monitor the tech is looking at. It is normal for the liver, kidneys, bladder, spleen, etc. to light up from the radiation. It is the job of the radiologist to interpret what is abnormal absorption of of the radioactive Octreotide.
The first few times I had this scan I felt a little claustrophobic because the panel comes to an inch above my face. The good part is that you slowly scoot out from under the panel,and your face comes out first.
2. The second test I have is a 360 degree CT scan. This one is 30-40 minutes long. It's cool because the panels rotate around around your body. It is not claustrophobic because there's wide open spaces between the panels.
3. The last scan is a nuclear medicine scan. It's also 30-40 minutes and seems to go quickly after the other two,
The next day I come back again and go through the same scans. There's no more injecting the drug because the doctor is watching to see what happens 24 hours after the injection.
Sunday, November 28, 2010
I have not had an Octreoscan done this year because all through 2009 they did not show anything. [Plus, they cost my Insurance company over $10,000.] So, this year we tried doing an MRI in the spring. An MRI exposes me to less radiation, too. The images from the MRI were very clear and show a couple lesions in my liver that were only 2mm. However, those are not the carcinoid tumors. The surgeon removed one of those lesions in 2008 just so my oncologist could be reassured about what it was, and it was harmless. So, the MRI found structures that are only 2mm, which was nice to know. The two carcinoid tumors that I have had removed have been less than 1mm.
So Monday and Tuesday I'll be back at UCI Medical Center in Orange, California. I'll arrive at 9:15 and be hooked up to some radioactive Octreotide about 10:00 am. Then I wait about 4 hours for the first scan. I'm free to move about the campus or go shopping across the street. At 2:00 pm the technician does the first scan. I'll probably leave about 4:00 pm.
Tuesday morning I return at 9:00 or 10:00 to have the second scan done, and we go through the whole routine again. It takes about 1.5 hours for the longer scan that follows one that's only 40 minutes long. Immediately after the scan, I will go across to the Chao Family Cancer Center and have an injuction of my long-acting Octreotide. Then I should be set for medication for 28 days.
Lately, my lab results keep coming back normal. My Chromogranin A is below 10 and my gastrin is normal. That's a great frustration for many carcinoid patients. (I follow what they write on Cancer Compass.com.) Some patients don't get diagnosed because the high amounts of hormones in their bloodstream don't always show up when they are at the lab. I joke about hiring a phlebotomist to follow me around and draw blood right when I get sick. I have been reading comments lately that the ourpouring of chemicals into our blood is in cycles, not constant. That would match what I have been finding.
Since I was put on Welchol I have been much better. Thanks for your prayers. It seems to work very well for me, and I have not been sick for a few weeks. So I continue to use the Welchol and Octreotide to treat carcinoid. So as long as I can take a 3-hour nap five days a week, I'm doing OK.
Tuesday, November 16, 2010
As I looked over that stats on this blog, I saw someone had located My Journey to Joy by entering the key words "finding encouragement." They were linked to my earlier blog about finding encouragement on the Internet. I wonder if this helped them. It recounted how I was in pain from carcinoid and looked on my computer for some hope. I didn't mention that I had come here with a prayer in my heart that God would lead me to something that would work for me.
My earlier posting recounted how I found a blog belonging to a Christian carcinoid patient: dgwhealthnews.blogspot.com. I was encouraged to find this because it meant I was not alone. Also, Dennis G.W. writes such an excellent email called "The Encourager" which is attached to his blog. I hope that reader went on to read Dennis' blog.
I can't go back and fix the past, but I can offer some encouragement here. One time when I felt like my cancer battle had me wandering in the wilderness, I had prayed hard for help. The next morning I was making a cup of tea, and to my amazement a preacher on TV spoke exactly to my situation. I didn't even know who he was. I had turned on the TV to see the news, and God sent me the word I needed.
It was a sermon that referenced Psalm 57. In this psalm David had fled from Saul and was hiding in a cave. David had been anointed the next King of Israel while Saul was still the current King. David writes:
Have mercy on me, O God, have mercy on me,
for in You my soul takes refuge.
I will take refuge in the shadow of your wings
Until the disaster has passed.
I cry out to God Most High
to God, Who fulfills His purpose for me.
He sends from the heavens and saves me
rebuking those who hotly pursue me;
God sends His love and His faithfulness.
I am in the midst of lions;
I lie among ravenous beasts--
men whose teeth are spears and arrows,
whose tongues are sharp swords.
Be exalted, O God, above the heavens;
let your glory be over all the earth.
They spread a net for my feet--
I was bowed down in distress.
They dug a pit in my path--
but they themselves have fallen into it.
My heart is steadfast, O God,
my heart is steadfast;
I will sing and make music.
Awake, my soul!
Awake, harp and lyre!
I will awaken the dawn.
I will praise You, O Lord, among the nations;
I will sing of You among the peoples.
For great is Your love, reaching to the heavens;
your faithfulness reaches to the skies.
Be exalted, O God, above the heavens;
let Your glory be over all the earth.
Psalm 57: 1-11
A psalm of David.
NIV except that I capitalize pronouns refering to God, and the NIV does not.
Other Psalms of encouragement include 40, 91 and many more. That preacher that I just happened to find on TV was Joel Osteen. At that time I did not know who he was. God just made sure I was there to hear what he had to say.
Friday, November 12, 2010
I just discovered there is a way to view the numbers of people reading my blog, and what countries they are in. I was aware I have friends and relatives in Canada, Australia, and the USA who read my blog. What is super amazing are the other countries where people have found this blog. That's the wonder of the Internet.
So, "Hello!" to those of you in Hungary, South Korea, China, Slovenia, Austria, Italy, the UK and everywhere else! I don't know how you found My Journey to Joy.
Actually, I am aware how a few of you found it. You clicked on the hyperlink from the Carcinoid Message Board on Cancer Compass. Some of you were searching Dave Thomas and carcinoid cancer, or Steve Jobs and NET. Some I'm glad you found me. That is really neat.
I hope I encouraged some of you or gave you information that was helpful. I know that many of us are on the same journey, but at different points along the way. Thank you to my loved ones who check here just to see how I am doing, and to pray for me.
Please leave a comment when you stop by again. It would be fun to know your first name and where you are living. Last year I got the nicest comment from Richy F.; he found me on Facebook. I still treasure that.
God Bless You All,
Wednesday, November 3, 2010
This is a quote from the brochure that comes with the prescription when the Rx is purchased at Rite Aid.:
"Octreotide is used to treat watery diarrhea and sudden reddening of the face and neck caused by certain types of tumors (e.g. carcinoid tumors, vasoactive intestinal tumors) that are found usually in the intestine and pancreas. The symptoms occur when these tumors make too much of certain natural substances (hormones). This medication works by blocking the production of these hormones. By decreasing watery diarrhea, octreotide works to reduce the loss of body fluids and minerals... This drug is not a cure for these conditions. This medication is usually used with other treatment (e.g. surgery, radiation, other drugs). "
Since I wrote last I have added Welchol to my treatment. Last week on Monday as I was telling my cardiologist about my increased carcinoid symptoms, he suggested that I use Welchol to combat the diarrhea and decrease my LDL a little more. (It's at 69, yes, 69. The man's a fanatic about low LDL. Actually, he wants my LDL low because my HDL is at 39, and my triglycerides stay above 150 unless I am being REALLY good. Also, the people having heart attacks now have LDL at 130.) I the idea about Welchol past my internist, and he thought it was a great idea. He said patients complain bitterly about how constipating Welchol is, and he had used it before in a patient before who suffered from a nasty digestive disease.
So, what is Welchol? It comes in a packet and you mix it with water. It is tiny resin beads that absorb cholesterol from the intestine. Having used it for 9 days, it seems to be working like a great little plug. I continued to have diarrhea for 8 days after starting Welchol, but it slows everything down, so I didn't get as dehydrated. Also, once I begin to get sick, I take the Welchol, and it seems to work in about 90 minutes. Before this, it was taking 2-3 hours before I would stop being sick. So I am better.
Thank you for your prayers. I am sure prayer and God's influence helped Dr. Chen come up with the idea of the Welchol. Also, The Lord has been blessing me with some days that are either really good all morning up until 1 pm like yesterday. Or a day like today when my cognitive function was impaired until the afternoon,and then I began to feel better. How I would like to get by brain, prayer, and Bible study all together, so I write a blog that is worthy of Him.