How my Medication works

When I picked up my Octreotide (Sandostatin) today, I noticed the excellent list of uses for Octreotide. Nurses are aware that it is used for diarrhea, but most people don't know it is the treatment for some rare cancers.

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.

Love,
Sharon

It's Me, O Lord, Standing in the Need of Prayer

Hi,

Postscript written 12/2/10: Since I wrote this I have seen the gastroenterologist and begun taking a new medication. My cardiologist started me on Welchol, which I write about in another column. The gastro didn't think I had any other digestive conditions and he thought the Welchol was a good idea. I was nice to see him; we had not seen each other since he did the biopsy that found my first carcinoid tumor. Also, I have resumed taking Nexium and Mobic, which did not cause any of the illness. So my symptoms are much relieved. Thank you for your prayers.

Original Post:
I'm in a quandary. All my labs tests for carcinoid cancer are coming back normal: Chromogranin A, gastrin, even the special urine test I asked my oncologist to do [5-HTP.]
However, the diarrhea is getting worse and worse since August. Wednesday I was sick most of 13 hours from 7am to 8pm. I got a few hours of rest in the middle of the afternoon. I am
giving myself rescue shots of Sandostatin and taking Lomotil the maximum dose my doctor allows. Some days I am not sick, but it has become more common for me to be sick.

Last night I had the faith to believe God might heal me. Sometimes I don't think He is going to heal me because it's been so long since I first got sick. My pastor and others were praying for people during church. He prayed for me and others. Then the pastor said, "This might sound odd, but as I was praying for Brandon, I was told to pray for someone's liver." No one else stepped up, so I did, since my cancer is in my liver. It is exciting to think that God recognized I was there, and He sent a special message to Joel (my pastor) to pray for me.

I haven't felt any different since that prayer, but I know I was prayed for regarding healing. That makes me wonder, what if God is healing me, but I can't tell because of the diarrhea? All the data coming back from the labs shows good results. What if the diarrhea is being caused by something else, and not carcinoid cancer? My doctor and I have considered that possibility, so I have an appointment with a gastro-enterologist on November 15. This week I began to wonder if the diarrhea could be caused by one of the many medications I take.

Therefore I am not taking Mobic or Nexium for a week to see if that improves my digestion at all.

So I appreciate your prayers. Very much.
Sharon

God Expects Me to Keep my Promise

September has been a month where I learned that God really hears what I pray to him. He also hears my promises and expects me to keep them.

When I wrote a blog at the end of the school year, I said that I felt God was calling me to be a woman "of one thing"--someone who spends her time worshiping Him. To minister to the heart of God. I quoted a passage from Captivating, a book by John and Stasi Eldredge. Little did I know that this calling was not a product of my overactive imagination.


In August I was having difficulty exercising at Curves because of a pinched nerve at the base of my spine. I could only use 5 out of 12 machines: the ones for the upper body that don't pull on the base of the spine. I was discouraged because I wanted to reduce my waistline. It seemed like the only thing I could do to burn calories was to go for walks. Because of the excessive heat, I decided to take my walks in the morning about 8:30 and walk the dog at 7:30 pm. My plan was to walk every day immediately after breakfast.

There was just one problem. That mean I set out walking before praying and spending my time with God. When I would return from my walk, I'd get busy with the errands of the day. I didn't spend much time in prayer. I prayed, but I didn't sit in my prayer chair very long and worship God. My gradual study of Acts was crawling along. This isn't the behavior of a woman who wants to minister to the heart of God. So He called me on it.

On the last day of August, I set out for my walk and became sick after passing 5 houses. The next day, I walked past only one house, and turned my right foot. I fell down on my foot and broke the 5th metatarsal. It only took me a few days to figure out what God was telling me.

God has been giving me a greater desire to study the Bible. I have had the book When I Don't Desire God How to Fight for Joy by John Piper since Christmas. I read a chapter of it, then set it aside so that I could read a book by Phillip Yancey. As has happened in the past, when I would need the information, God developed the desire in me to read John Piper's book. When I Don't Desire God, has chapters on how to use Bible study and how to use prayer in the fight for joy. Also, there is a chapter on scripture memorization. So it is just what I need to read now. Thank you, Father, for getting me the book I would need.

Lastly, I have joined Bible Study Fellowship, BSF. They are studying Isaiah this year. We have homework every day and meet together once a week. It's a great study, and I have a friend who has been in BSF a few years. She really enjoys it and has grown so much. I can see the change in her, and she is much happier. God is meeting her needs and meeting her in a variety of places. Like at a shoe store, but that's another story.

A quote from John's book- I also saw, moreover, that it was not my good frame of heart that made my righteousness better, nor yet my bad frame that made my righteousness worse, for my righteousness was Jesus Christ himself, "The same yesterday, today, and forever." Now did the chains fall of my legs indeed. I was loosed from my afflictions and irons; my temptations also fled away; so that from that time those dreadful scriptures of God [about the unforgivable sin] left off to trouble me now; now went I also home rejoicing for the love and grace of God.

John Bunyan Grace Abounding to the Chief of Sinners

Off to the Oncologist Today

Hi!

Thank you for your prayers! I am much calmer in this flood of problems than I was a few years ago in a similar situation. Then I went through a time where many things were breaking down, I damaged my car, and my relationships were a mess. After that time I was closer to God.

This time I have had cancer problems twice in the last week, then I broke my foot on Wednesday, September 1st. I can't get a cast on my foot until Friday, Sept. 10th because the orthopedist was on vacation. Then Spunky our beagle (who is a cutie pie) has gotten so sick from his food allergies that he is tearing up his skin by licking at it, and Saturday he got stung by an insect. He went to the vet and got 3 shots, plus now he is wearing an Elizabethan collar so he cannot lick or scratch. He is not a happy camper, but today he feels better. He can move along at a normal rate of speed, and his eye does not look infected anymore. The good thing for him is that I am cooking him yummy chicken and rice, because those are two things that are safe for him to eat. I am having problems with one relationship, but another one may be improving. I cannot exercise at all or take Spunky for a walk because of the broken foot and a pinched nerve in my back.

Saturday September 12th is my 40th class reunion, and I will go as a fat little porker on a walking cast. Tomorrow I had better start trying on clothes to see what will fit. My plan was to spend the last two weeks before the reunion walking 4 days a week and going to Curves 3 days a week. At least I could firm up some muscles and and eat less sweets. So far that has not happened, but I'm not really upset. What can I do?

All I can discern right now is that God wants to order my steps. Also, I'm praying first thing in the morning because I cannot go out for a walk. So my priorities are being rearranged.

Because of your prayers and my maturing, I am not wondering, "Why is God doing this to me???" I have been through a period of hard times before, and it wasn't God attacking me. He was growing me. Some events are also the normal progress of life; we are older so bones break easier. Doctors take vacations. I need to be patient. I am so lucky that I am not working. I wrote that the months of June and July were halcyon days, realizing those times are very brief. I enjoyed them and I thank God for them. It is wonderful to get to relax and enjoy the beauty of the Earth. (I will write a blog on the pursuit of Beauty. Until reading John Piper and the Eldredges, I never realized it was of God. )

I am remembering an old hymn. It goes something like this:
"For the beauty of the Earth, for the Glory of the skies
For the love which from our birth over and around us lies.
Christ, our God, to Thee we raise, this our hymn of grateful praise."

At the beginning of this blog I wrote out the lyric of "The Glory of it All" for a reason. The song says that God does not change. This song was a huge comfort to me on the day I realized my cancer was not curable. It comforts me now when I don't understand what is going on with my cancer. I will ask the oncologist today to increase my dose of Octreotide. On Sept. 2 I had another unexpected bout with diarrhea, just 3 days after the last one. I didn't eat anything that would cause me to be sick and pouring sweat in the middle of the night.

"At the start He was there, He was there. In the end He'll be there, He'll be there. And after all our hands have wrought, He forgives....All is lost, Find Him there, Find Him there. After night, Dawn is there, Dawn is there. And after all falls apart, He repairs, He repairs."

Am I Descending Into the Pit?

Caution: This blog contains graphic details about the symptoms of carcinoid cancer. I am going through another crisis, and I need prayers. Not a crisis of faith, but a physical crisis, as my symptoms are increasing and my oncologist isn't catching on that things are noticeably worse.

Greetings from the Southland! I am now officially retired; other teachers are getting up early to go to work, but I don't have to get up early any more!!! I do get up by 8:00 am on most days and go for a walk in the morning.

Today I was having a great morning. It was sunny, but not hot, when I set out to walk a mile at 9:50 am. I headed a block north with the cat in the house sleeping and the dog in the backyard looking for lizards to chase. I would be back in 20 minutes to shower and get ready to leave for the Cancer Center at 11:30. It was a really lovely day.

I was one block from home when I felt like I needed to use the bathroom. A few more seconds and I realized it was a carcinoid problem. (A carcinoid problem is very urgent) Another second and I realized that I needed to turn around NOW. I was sick when I got back to my house, and was afraid to go on and continue my walk. I was ill until 1:00, including a detour off the 91 Freeway to stop at a Carl's Jr restroom.

Carcinoid cancer is characterized by diarrhea. Also, my face flushes pink, and I get surges of heat that spreads over my head and shoulders. As my long-acting Octreotide shot wears off, the symptoms break through.

This month I have been sick with diarrhea twice in public places. (This has never happened before.) The previous time was just 12 days ago when we were moving K into the dorms at college. I dashed into the restroom in Metzger Hall instead of going to the cashier with a check. By the grace of God, I had brought a change of clothes because I thought I would get grubby helping carry boxes into K's room. I called my husband from the restroom, and he brought me the clothes.

For the rest of my life, I will now have to carry a change of clothes with me every time I leave home. I don't feel safe anymore.

I have read accounts of carcinoid patients on Cancer Compass. I have read the letter of a wife asking what more can be done for her husband whose diarrhea now lasts all day and all night. I have seen a photo of a carcinoid patient sitting in his wheelchair unable to hold his head up anymore. Metastatic carcinoid is not curable. No one wants to go through this. It is a descent into the pit, and it looks like my descent is starting now. I have wondered when this day would come for two years.

When I was at the oncologist's office today, he did not want to increase my prescription of Octreotide. He wants to leave it at 30mg a month because that is the amount used in the PROMID study that we are following. He wants me to take Imodium or Lomotil if I just have diarrhea twice a month. He doesn't consider it a very bad problem.

Here is the problem. Lomotil or Imodium is taken after a patient already has a bout of diarrhea. If my diarrhea begins while I am out in public, it is already too late. I need to be protected from public humiliation. I'm not ready to go into that pit yet.

Luckily, my doctor is having me come back in one week. He wants to see how I am doing. If the medications don't work, he will consider increasing in Octreotide to 40mg. I also need to suggest that he measures another cancer marker in my blood. For several months the Chromogranin A in my blood has been going down to extremely low levels. However, for 3 months my symptoms have been increasing. I have information about Lanreotide, another marker we can check.

I need prayers that the oncologist will consider this other blood test. I am also getting concerned that we need an Octreoscan to see if the tumors in my liver can been seen. I keep having increased symptoms, but nothing shows up in scans. I want an Octreoscan, even if that temporarily raises my Chromagranin A levels. I have this fear that I still have the tiny tumors, but they may be increasing in number while staying very small in size. If the tumors were getting bigger, they would show up in an MRI. They don't show up, but I keep getting sicker. Maybe there are dozens of tiny ones.

Please, Father, help this to work out.

I had a Cool Dream

Hi! How are you doing? I'm doing fine.

I had a dream two nights ago that I want to write out. It was unusual because the interpretation of the dream came to me just as I woke up. It was like God told me right away so I would not wonder. Also, this dream had more color, more pageantry, and more mystery than usual.

I was in the court of Charles I of England. At first I wasn't sure what I was doing there, but I could walk freely about the palace, and I wasn't a serving wench. I wasn't a lady-in-waiting to the Queen, either. I seemed to be rather middle class, but I lived in the palace. The King knew who I was; he spoke to me pleasantly one day and smiled at me as he passed by.

I remember thinking in the dream that being in the court of Charles I was not such a good idea, because he was beheaded later. But nothing bad happened during the dream; I was just trying to figure out what I was doing there. All the palace was abuzz getting ready for a big party. Plans were laid; fabric for gowns was bought. I was concerned about visitors being able to wander all over the palace; and discovered I had a key to lock the door to my room. That was cool. I also had my own room. It was about then I decided that I was a teacher of the girls in the palace.

The day of the party arrived. This time I saw Charles II. He asked me if I knew what he was saying in Latin. I apologized for not knowing, and explained that it had been so many years since I studied Latin that I had forgotten. He explained to me what the phrase meant.

Sometime after the party I figured out what was going on. It was like I had amnesia about who I was and how I got there. It turns out that my family was from the Northeast part of England. (Just below Scotland.) We were a seafaring family. I saw a map in my dream showing the area where we had land and our ships sailed. My father was a local nobleman and had some business on the seas. He found out where I was and was coming to get me.

Now I got to get all dressed up like one of the noblewomen in the palace. All my clothes were ivory-colored. I had an elaborate ivory curled wig. I got to wear a gown with beautiful lace and I got to walk down the front stairs. In the earlier part of the dream, I had to go up and down the back stairway.

Finally, my dad came to get me. His carriage was in front of the palace, and he was waiting at the foot of the stairs. He had a coachman and two other attendants with him. I got to descend the beautiful curving staircase, and get into the coach to go home. The story had a happy ending.

As I woke up I thought, "I found favor with the King, and my Father came to take me home."

I don't think there's any rush on God coming to take me home, but this was a neat way to envision it.

(Isn't it odd how we have dreams inside of a dream? While I was having the longer dream about being in the court of Charles I, I had a short modern dream about shopping for clothes. When the women were getting their gowns ready for the party, I was in a lingerie boutique shopping for things with beautiful lace on them. I didn't find much until the last second of that dream. Then I got to use lace when I had my gown made. )

Halcyon Days

Saturday was a great day. We celebrated the wedding of my Dad's oldest grandson, Andrew, the first grandchild to get married. The groom is 25 and has been living with my Dad for nearly 6 years since my mother died. He married a lovely woman he met 5 years ago. So everyone's happy!

The bride and her family put on a terrific party, and it was a beautiful setting at the University Club at UC Irvine in Southern California. The ceremony was outside surrounded by trees, and the reception was inside a large room with huge windows so we could enjoy the view. We have been looking forward to this wedding for a year, and it was great. It's wonderful to see a couple who have grown into their relationship, and are ready to take the step into marriage.

So these are Halcyon days! Everything with me is fine. My cancer is manageable, and I'm glad not to spend my evenings feeling tired out. I began writing on my book last night: I'm cementing the offspring of my first Lazzieur family. Now I need to locate the photos I took on a trip to Maryland about 7 years ago. I will find them; it just takes time.

Thank you for your prayers! You are one of the reasons I am enjoying these great times. God is giving me a rest before He lets me know what he wants me to do next, and I am accepting that.

Sharon

I'm Having a Good Time!

Hello!

I'm having so much fun, I haven't written for a month. My daughter, husband, and I went on a trip to Tennessee for 8 days and returned one week ago. That followed a party that we gave to celebrate our anniversary, K's graduation from high school, and my retirement from teaching.

Since Monday I have been printing photos (dating back to December 2009) and creating posters and albums from them. Tonight I promised myself I would not do that. #1) It keeps me up until 3 am because I'm having such a good time and trying to get things to come out right. #2) I have to deal with the real world and get my bills paid. Most of my bills are all due by the 11th of the month. So I will be brief.

Today I had my cancer treatment and saw the oncologist. Things continue to go well. I still have symptoms of flushing and odd digestion, but he has decided that's just how my body deals with this stage of my cancer. Some patients are confined to their bedroom and bathroom most of the day, so I can't complain. I am in fourth stage cancer. Amazingly, my Chromogranin A was at 7 last month on the day when it should have been at its highest. (That's the day before I get my treatment.) So even when I try to look for trouble, I can't find much.

I will just give up and accept that God is letting me stay well for months. Having cancer keeps me waiting for the other shoe to fall, but maybe I should just relax. Praise God.

Health Update June 2010

Hi,

I haven't said much lately about my cancer. It is back to letting me know that it's here. I have more flushing- a few times a day. I was going weeks without seeing flushing just a couple months ago. I also sweat profusely from my scalp, usually in the mornings. My digestive symptoms are coming back, with a little nausea, and when I go to the restroom expecting only urine to show up, I get something extra. That's normal carcinoid cancer.

When I would read about carcinoid a couple years ago, some writers would make the distinction that diarrhea includes more frequent stools. That's a good point to make with respect to carcinoid. In fact, that was my first symptom. When it continued more than one week, I made a mental note of it, but didn't say anything to my doctor until I had developed symptoms as if my bile duct from the liver was blocked. Then it turned out that the symptoms were related.

My last Chromogranin A was 15.3. I am going to have it done on Tuesday morning, June 8th, to see what it is at its highest. Then I will go in and have my treatment that afternoon. I will see if my numbers have gone up higher. The 15.3 was done halfway through the month after my injection of Octreotide. That might have been considered an average CgA for me, but this one will be at the time CgA should be the highest.

[I forgot that I need to explain Chromogranin A to new readers. CgA is the marker put out by carcinoid tumors. A number below 50 is normal. I have been below 50 for several months by God's grace and His blessing on my medication.]

I'm continuing getting ready to retire. I filed my form with the school. I completed the PARS packet to get the Early Retirement Package--which was appoved, Thank God! I will get an extra $30,000 spread over the next 5 years. The union had a retirement dinner Friday for 74 retiring teachers. Last year there were only 12 retiring. So we are keeping 74 more jobs in our district.

I feel very good about retiring. This is the beginning of the next chapter of my life.

Love,
Sharon