What is Happening Now

I have edited this from its earlier form to give my daughter more privacy. Dear Friends, For the last four days I have been encouraged by looking at this blog and seeing that many people have stopped to read it. Seeing the someone has looked here for help uplifts me.

It seems like readership increased as I sat in the ER with my daughter and my husband. My husband and I took her to the best place we knew of: Loma Linda University Medical Center. She was assessed in the emergency room. (You can schedule an appointment online to get into the ER there. I recommend it. Strongly.) She was referred to their facility nearby that is run by Loma Linda, and admitted. A young relative of mine had been there a few years ago, and says the staff will treat her well there.

Please pray for Kay and for us. Pray for wisdom, for healing. Pray the doctors will talk to us about what is going on. Kay is a very young adult, and I am waiting to see if the doctor has consent to talk to us. Pray for me when a 20-year-old staff member speaks to me like I'm not supposed to hear anything about my daughter. Her Dad and I brought her in, and are paying for her treatment with the insurance we earned by years of work. When we brought her in, the staff wanted to talk to us, because Kay wasn't much help.

For comfort, I turned to Philippians chapter 3. I used to read Philippians daily when I first was diagnosed with cancer. I remember when I prayed in 2007 that God could take my health, my daughter or my father to keep me in His perfect will. This is one way of losing my daughter.

"More than that, I count all things to be loss in view of the surpassing value of knowing Christ Jesus my Lord, for whom I have suffered the loss of all things, and count them but rubbish in order that I may gain Christ, and may be found in Him, not having a righteousness of my own derived from the Law, but that which is through faith in Christ, the righteousness which comes from God on the basis of faith,..."

Philippians 3: 8-9 New American Standard

Welchol works on Diarrhea

Hi,


This is not real pleasant subject, so I will just use the word one more time. From now on today diarrhea will be referred to as the d-word. I wanted to use it a couple times so that this might show up on a Goggle search. Many of my readers find this blog through Google, Ask or Right Health. D-word is one of the most frequent problems we have, so I wanted to have a separate post about how Welchol helped me.

Looking at some old posts from September to December, I wrote of being increasingly sick from the d-word. It started at two days a week and increased to daily. That's a very common problem with carcinoid, and I began to despair of ever being well again. I hadn't expected to become housebound so soon. I'm not even 60 years old--I have lots of things to do still! And I know some of you are 70 and sitting there saying the same thing. We want our lives to be full.

In November I had a regular appointment with my cardiologist (Dr. Chen) whom I see about 3 times a year. I told him about my symptoms, and he suggested I use Welchol. We had just gotten my "bad" cholesterol down to 80, and Welchol is used to lower cholesterol. He explained that it is a packet of resin beads that attract cholesterol, and the cholesterol passes out with the feces. It is not a drug that circulates in the blood stream. It also makes people constipated.

I used Welchol daily for the first 30 days. I would start to get d-word, mix the Welchol with water, drink it and wait. About 90 minutes later it seemed to have worked, and I could resume my activities. It would take about the same amount of time for Lomotil to work, and that is a drug that paralyses the intestines. Also, in weeks were I was having d-word daily, I could just use the Welchol in the morning and go out that day. I went through the first box of Welchol in 30 days.

It's February and I still have half of the second box in my home. It's ready in case I need it. I hope Dr. Chen isn't disappointed that I have not kept up using it daily. He wants my bad cholesterol down to 70!

The information on front of the packet is: Sugar free. Welchol (colesevelam HCl) For Oral Suspension. 3.75g. Citrus Flavor. Single-Dose packet. Each packet contains 3.75 grams of colesevelam hydrochloride. Phenylketonurics: CONTAINS PHENYLALANINE 48 MG PER PACKET.

Note: Welchol is gritty. It's not fun to take, but you can dilute it in 1/2 to 1 cup of water. Someone wrote me that you can put it in soda.

UPDATE 12/17/11

I am happy to report that Welchol worked well for me for 13 months. It would stop diarrhea for 10 -24 hours for me. This month, however, I noticed it only worked long enough on a Sunday morning to get me and my passengers to church and back home again. It was effective from about 8:30 am until 12:30 pm, but that was long enough to get to worship. I spent the whole sermon feeling lots of activity in my intestines, and hoping I could get home in time. I did get home, but was disappointed Welchol was not as effective as it had been.

Yesterday I was very ill from carcinoid. I went through three doses of Welchol and two shots (100 micrograms each) of Octreotide Acetate. Basically, I went through two whole cycles of emptying my intestines. The 2 Welchol and the first injection lasted long enough for my daughter to drive me to a doctor's appointment, rest and walk my beagle three blocks. Then shortly before bedtime, I was sick again. I took more Welchol and took the second injection. That was sufficient for me to sleep through the night. I'm still wearing a bathrobe today and sitting around the house.
I have more understanding of the carcinoid patients who talk about the unrelenting d-word. It seems like it will win in the end.
I hope this helps someone.
Sharon

New Data

I got the results back from my blood tests done in February. My Gastrin is 38, which is normal. My Chromogranin A is 1.0!

Yipee! Thank you, Father!

A Trip to the Emergency Room

Hello,

My visit to the emergency room two days ago had nothing to do with carcinoid cancer. However, the carcinoid did influence my blood pressure.

I had an accident on Sunday when I fell and struck my head. The back of my head was cut on the corner of a stool, and my scalp was bleeding. I was surrounded by friends, so they did all the right things; calling 911, applying direct pressure, making sure I stayed conscious, etc. I had no intention of becoming unconscious and my mind was clear the whole time. My pastor told me the next day that I was running on adrenaline while I was lying there telling the EMTs my medications and how to spell them.

As usual, my blood pressure went up because of the trauma and the stress. I guess it got close to 195/100. When I was in the hospital, I could see it was 183/78 which is not really unusual for me in a situation like that. I told the ER nurse that the accident caused the carcinoid tumor to pour chemicals into my bloodstream that raised my blood pressure, but I don't think she understood. I was well taken care of and released quickly.

In the middle of the night when I was too uncomfortable to sleep, I began to think about how to tell medical experts about carcinoid crisis. They don't think of it happening in an accident--they don't seem to even know about it--but one of us can die because of it. About 4AM I was deciding to create a 5x8 laminated card for the doctor and the nurse that would give them some quick facts about carcinoid crisis and a website they can look at in time of need.

I did decide to get a Medic Alert bracelet so I don't have to recite all my afflictions and medications after a bonk on the head. I have also decided to ask people to read the medications back to me. I got asked the same question by three people who had not been conked on the head, and all the ER doctor really cared about was did I take the medication Plavix. The paramedic had written down all the drugs I had told him back at the house. Why didn't anybody read it back to me to help me remember?

Let's see if I can remember to do that next time.

Thank you for your prayers. I have 6 staples in my scalp and they should be removed about February 15.

God bless,
Sharon

I Pray for You

Dear Friends,

I do pray for you. As I said a few months ago, I can see the countries my readers are in, and I can see the search words you use on Google or ask.com. I have prayed for the person that entered "dying carcinoid" and "carcinoid 2mm" and others. I have those tiny tumors, also. How moving it is to me to see patients are looking for encouragement, comfort, and information, and they come to this blog. God bless you all. God comfort you, strengthen you, heal you and hold your head up. God loves you.

The post that the most readers look at is the one about the Octreoscan. Everyday 1-5 people read that. I wrote it to be a source of information to you, and I'm glad that it is doing that.

If you want me to pray for you, please leave your request in the comment section, and I will add you to my daily prayers. I know God doesn't heal us all, but He can lessen pain, increase failing appetites, shrink tumors, give us composure, and give us assurance that our lives are not lived in vain. Even our lives that are shortened by this crummy illness have great significance to someone.

Do not fear for I AM with you. Do not be dismayed for I Am your God. I will STRENGTHEN you and HELP you; I will uphold you with my righteous right hand. Isaiah 41:10

Love,
Sharon

Some Encouraging Words

Often when I am studying my Bible, I think of ideas to share with you. I look for large passages to expound on. I haven't found anything very long yet, but I was reminded of a favorite passage today that is encouraging.

It is in Hebrews 12: 1-3. This follows the wonderful chapter of the hall of faith; I love reading chapter 11 and leading right into chapter 12. It goes together.

Therefore, since we have so great a cloud of witnesses surrounding us, let us also lay aside every encumbrance, and the sin which so easily entangles, and let us run with endurance the race that is set before us, fixing our eyes on Jesus, the author and perfecter of faith, who for the joy set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God. For him who has endured such hostility by sinners against Himself, so that you may not grow weary and lose heart.

Hebrews 12:1-3 NAS

Happy New Year!

Hi,

I have added an update near the bottom from my birthday, January 7th.

I haven't said much this month because I've been busy creating another blog about my McDowell ancestors. Remember the big photo of Fallingwater River that was at the beginning of this blog? It's decorating the "McDowell Family of White County Tennessee" now.

The new picture on this blog is from the Mission Inn in Riverside, California; it seems evocative to have my journey symbolized by a stairway and a door. (LOL. Don't read the sign at the bottom, or you will find out the door doesn't lead anywhere. Just pretend there is still a garden at the top of the stairs.) The photo is from our anniversary dinner at the Mission Inn in 2009.

I am doing well. My next oncologist appointment is not until February. I am convinced that the tumor in my liver is smaller than several months ago. I had a little Chardonnay with a Christmas luncheon on December 21, and it became a demonstration of how small my tumor had become.

In January 2010, on my birthday I drank one inch of Reisling (a white wine) with my dinner. I knew there was a possibility of having a reaction to the alcohol with a carcinoid tumor in my liver. I wasn't sure what was going to happen, so I drank just a small amount of wine. I have read of every reaction to alcohol from turning red to having a carcinoid crisis.

In the middle of the night I woke up drenched in sweat. My hair was wet and my pillowcase was wet. Somehow the alcohol in the wine stimulated the carcinoid so that it poured hormones into my bloodstream that produced excessive perspiration.

Last week on the 21st, I drank about one inch of white wine from a white wine glass. I slept through the night just fine. When I woke up in the morning a single trickle of perspiration ran down my chest. That small reaction tells me that the cancer has shrunk; it was too small to produce much hormone, so my reaction was less than 11 months ago.

January 7: When I went out to eat on my birthday, I tried a glass of Reisling with my dinner. This was a larger glass of wine, probably because the restaurant was charging $7.25 for it! Since I don't drink very often, I can feel the effects after only a few ounces, so I stopped at half a glass. That night I had no unpleasant reaction to the wine at all!

So now my scans, blood tests, and my body's own reactions match! The tumor is smaller than it was at the beginning of 2010. That's a good way to end the year! Thank you, Father. I love you.

Chromogranin A and Octreotide Scan Results

Hi,

Here's a recap on how I am doing. After becoming sick from Carcinoid on an increasing basis from August 25, 2010 through November 14, 2010, I am now doing much better. Much of the improvement is due to using Welchol almost daily in addition to Octreotide. Prior to the Welchol I was sick every day and had many activities cancelled. I also believe my tumor has gotten smaller; I don't know how else my Chromogranin A values could be below 5!

However, I have been flushing more often for two weeks. Almost every time I walk past a mirror my face is pink. This is another symptom of hormones being dumped into my bloodstream by my tumor. My oncologist, Dr. Z, says the flushing can be caused by serotonin, histamines, or several other chemicals. We have never checked for histamines in my bloodstream; that's one we can check next. I may be flushing more because I was giving myself shots at home every 8 hours for one month instead of getting one long-lasting shot every 28 days. Also, I went off Octreotide in order to have the scans done last week.

I went to the oncologist today. I had an Octreoscan done on November 29-30, then my blood was drawn on December 3. Usually, after my scans are done, my blood levels of my cancer markers are high because I have to go off my usual cancer medication. Please see the previous post for the explanation.

Chromogranin A (CgA) and gastrin are the two cancer markers for carcinoid that sometimes show up in abnormal amounts in my blood tests. [I am trying to type this in columns, but blogspot doesn't seem to do that, so I am working on something that will be organized.]

Here are some past numbers:

Normal Range FASTING CgA : 0-50 ng/mL; Gastrin < or ="100">

[Right here I had 2 paragraphs of data showing my cancer markers for 2009 and 2010. After a few weeks they disappeared. I don't know how I did that! However, in general the numbers for Chromogranin A were varied from 162 to about 50 ng/mL during 2009. For 2010 the numbers began to drop down from 40 to 20 to 15 then 8, 7, 3, 2.8 and 1.5. So praise the Lord! My cancer markers dropped precipitously!]

The great news is that last week, after going off of Octreotide for my scans, my Chromogranin A was down to 1.5 ng/mL. No new tumors were found in the scans, so that for once, my scans and my cancer markers match! The tumors are small and the production of the hormones is down.

Thank you, Father. I know how you love me.

I looked back at the blog I wrote after my pastor prayed for me on October 24, 2010. Possibly this good result from my scan and my blood work is from that night. God began shrinking my tumor down so that the hormones in my blood return to normal even when I wasn't on my medication.

What Happens during an Octreoscan?

Hi,

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.