We Need an Update! Really Good news!

Well, looking back at last month's post I see I need to let you know I am fine. I had to adjust to being on a lower dose of medication, and then get back to "normal".  So I'm sick in the morning a few days a week, but I do very well during the week after my long-acting shot while the Octreotide is at a high level in my blood.

The good news comes from my meeting with Dr. Imagawa, my surgeon, regarding my MRI. The scan, as usual, didn't show any sign of my tumor. It is not any larger than 3 mm, so it still cannot be seen. I asked the doctor if there is any way to know if I still have just one tumor or if they are like tiny grains of salt across my liver. He said there is no way to know when the tumors remain tiny.

The good news is that the tumor has grown so slowly for the last 4 years that Dr. Imagawa doesn't think it will be the cause of my death! He said I will still be sick, but I won't die from the oncology of carcinoid cancer. He said I will live long enough to die of something else.

This caused me to chuckle because I have spent five years wondering if I have five more years or 10 more years. Now I don't have to think about that, and I'm glad I already have been following the advice of my cardiologist since my recent female ancestors have had heart disease.

I asked him about a case like Dennis Woods who was pretty well the first six years he had carcinoid cancer, but during the next 7 years his liver filled with tumors. His liver is failing and he has brain damage from  the ammonia produced by his liver. The doctor interrupted me and said that I won't do that. That was what I needed to hear!

If my tumor gets large enough to be seen, the good doctor will take it out.

Regarding the phrase saying I will not die of the oncology of carcinoid cancer: he means that I still have carcinoid syndrome. That means my tumors are busy pouring chemicals into my bloodstream: that's why I am sick. The serotonin overload affects the heart, and the leading cause of death of carcinoid patients is actually cardiac insufficiency. That is why I already have a cardiologist watching my heart valves with an echocardiogram

 I feel like I am in good hands. Now I no longer feel like there is a giant pan lid over my head ready to clamp down on my life and confine me until I die. I feel more like a normal person.

Thank you, Father for your grace!

Love,
Sharon

So,This is How it's Going to Be? Day by Day and with Each Passing Moment

Hi,

Well, I guess the big experiment was a bust. A couple weeks after having my medication reduced by 6 mg per month, I am all the way back to giving myself two 200mcg shots per day at home. I am also getting a 20mg long-acting, repeatable (LAR) injection at the medical center every two weeks. So I am back to total of 52mg per month.

Unfortunately, I have had a couple of rough weeks. Last week I was ill for a few days, then this week I was pretty well Sunday through Wednesday, but sick for three days so far. Even on days where I don't camp out in the bathroom, I am still weak. I use the support of  my cane and my walker when I need their help. It's becoming more common to be ill. I am developing the philosophy reflected in the title of this post: so this is the way it is going to be.

Disclaimer! See the change that occurred just a week after I wrote this post by reading below! 8/10/13.

God is good. This morning when I woke up He brought to mind an old hymn:"Day by Day and with each Passing Moment." The link above has several great scriptures before the singer begins the song. Just wait, she does sing and the lyrics are posted. It's a lovely hymn from 1865.

You probably Do NOT want to read the section below unless you are a patient with bowel issues.

I must express my appreciation for Welchol one more time. From all the posts on this blog the one about Welchol being effective on diarrhea is the most popular. It is read every day.  So, let me repeat some information about it one more time.

I use the packet of 3.75 grams of the powdered Welchol and mix it with water. It is made of resin beads called colesevelam hydrochloride that attract cholesterol to cling to them. I was having frequent diarrhea a couple years ago and mentioned my problem to my cardiologist. The Holy Spirit must have impressed it on me because it busted into my thoughts twice while I was talking to him. After I told him, the doctor instantly lit up, and told me how this cholesterol-lowering drug also causes constipation.

Welchol is the reason I was able to sleep last night. I took a dose about midnight and slept until 8:50 am. It is effective for me 60-90 minutes after taking it when I have been in the middle of hours of diarrhea. If I have already emptied my gut, Welchol can hold back the next bout for 3-48 hours. Typically, it gives me one night's sleep or rest for a few hours in the middle of the day.

I hope this helps someone.

Post Script on August 10, 2013:
A week or so after writing the paragraphs above, I was doing better.  I had good health from late in March until July 7. For the second time in two years I had particularly good health for 3.5 months: in 2012 it was from about the middle of February through the end of May. I do not know why this happens, but I am certainly grateful for it, Father! This year we went on my "bucket trip" to France, and I only missed a couple of events.

As I was writing the original post in March, I came across this version of "Day by Day and With Each Passing Moment," but I uploaded the other one because the verses with it are encouraging. However, I do prefer this rendition by Russ Taff from his album Faroe Islands.

The Results of the Experiment!

Hi!

After one month on less Octreotide, the doctor and I have reached a conclusion. I will gradually resume using two shots per day of Octreotide at home until I can reach a happy balance that removes the dyspepsia and the weakness from too much Octreotide, but avoids the diarrhea and sweaty heat from the tumor!

Now, how will we achieve this perfect balance, you ask? For one month I have been taking just one 200 mcg shot per day about 10 am. I will begin to add in another 200 mcg about 10 pm on Mondays and Thursdays, and then do 3 shots per week. Maybe 4 nighttime shots per week will do the trick.

It is important to note that when my tumor is putting the chemicals into my bloodstream that make me sick, it is probably growing more capillaries, also. Octreotide works by decreasing the capillaries that supply carcinoid tumors. Therefore, when the level of the medicine gets too low in my body, my tumor might be growing.

In general, when I first decreased my shots at home, I felt stronger! I was going up and down the incline at the Grove Theatre where we have church without my cane. I even had my friend Raquel take my arm to walk down the aisle to her seat. Also, my upset stomach  went away after a week. (It was just dyspepsia. My stomach felt unsettled and some days I lost my appetite until after 12 noon.)

However, after 3 weeks of less medication, the cancer symptoms came back. I have had diarrhea on several days and the weakness that continues after it.  Plus, I can't go many places. And I get covered in sweat typically after 9 pm, when the medication in my bloodstream decreases. So the amount of medication needs to go back up, gradually.

Welchol still works for me! Thank God! See my other posts for what it does.

For patients who want to know the number of milligrams of Octreotide we are talking about, here goes: (200 micrograms is 0.2 milligrams)

0.2 mg aqueous shot at home every day
20 mg LAR February 14
0.2mg aqueous shot at home every day
20 mg LAR February 28

That is a total of 46 mg per month. I had been taking 52 mg per month by taking 2 shots at home per day. Now I have to figure out if 48 mg, 49 mg, etc., is the best amount for me.

This is something where prayer can be very effective so that God guides me to select the best amount of medication. Thank you for your prayers!

Love,
Sharon

Abdominal MRI 2013

For the last year I have been seeing my surgeon (Dr. Imagawa) at the University of California Irvine Medical Center every six months. I seem pretty stable, and my scans of all types don't show any tumors, so the doctor has decided to just see me periodically. Just because the scans don't show tumors doesn't mean there are no tumors. I have the microtumors of carcinoid.

When I went to see Dr. I in January, he noticed that I had not had an MRI since 2010, so one was scheduled. I went in on February 27 and had the scan done. I was supported in prayer by friends, and felt peaceful about going in. For the previous scan I had been afraid of claustrophobia causing me to panic during the MRI, so I had prayed, had asked 10 friends to pray, and took my regularly prescribed Effexor and muscle relaxant. That had worked very well, so I did that again. One other detail that really helped--I can see daylight if I look past the top of my head while I am in the MRI tube. It turns out there is open space only 9 inches away from my scalp!

So this time I was calm and the MRI even went faster! I brought in a CD by Mercy Me, and listed to the first two songs while the IV was put in and instructions were given. We were done with the scan before the last two songs were sung! I estimate I was in the tube about 30 minutes while last time it was 45 minutes.

It was good to lie in the MRI and hear "Where can I go from Your spirit? Where can I flee from Your presence? If I make my bed in the depths, If I go up to the heavens, You are there!" Those are lines from Psalm 139 (You are There) by Bart Millard and Kendall Combes from the cd MercyMe The Worship Sessions.

There is a beautiful version of the hymn Come Thou Fount on the same cd. The last verse is so exciting! "O that day when freed from sinning, I shall see thy lovely face! Clothed then in blood washed linen, now I'll sing Thy sovereign grace! Oh, I'll sing my song of grace, I will sing my song of grace! Come Thou Lord, O, do not tarry, Take my ransomed soul away! Come my Lord do not tarry, Take my ransomed soul away! (quietly) Send Thine angels now to carry me to realms of endless day." 

I found out the results of my MRI at a regularly scheduled visit with my oncologist. There is nothing new in the MRI. The same things are still in my liver. Now, I haven't seem the surgeon, Dr. Imagawa, yet. He might decide to do more exploring, and if anything changes, I will let you know.

God bless you!

Sharon

Hello everyone,

I've not written in a few months because I just can't get the words to flow. My health has changed so that I am not well for as long as I was before. In the past I was able to see improvement in my strength from Feruary to May 2012, but now my strength seems to vary from day-to-day.

In November I had a rough time for 8 days with much diarrhea and dehydration. I don't know what caused the diarrhea to begin. Now I seem to catch more of the viruses that go around than I like even though I had a flu shot. I have not had the flu, but I get upper respiratory viruses monthly.

Beginning in February 2013 my oncologist and I have started an experiment with respect to my medication. I have gotten a 20 mg LAR of Octreotide every 14 days since January 2012. I also began giving myself  a shot of Octreotide 200 mcg per day last spring. Then in the fall I increased the dose at home to 200 mcg twice per day. This helped with the flushing, sweating and diarrhea.

However, I have had more frequent exhaustion. Therefore, the doctor and I have decreased my at home dose to only one 200 mcg per day. This should lead to less fatigue and dyspepsia. (The dyspepsia began about July 2012.) These are two side effects of Octreotide that can be confused with the cancer symptoms.

Having my face flush red is only caused by the cancer. It does not come from Octreotide. So I am tracking my (1) strength (2) dyspepsia (3) flushing (4) feelings of heat and sweating.

After several days, I am having a greater area of my face turn red. The dyspepsia is better, but my strength is good on some days and not others. I will let you know the results of the experiment about March 7.

God Bless,
Sharon

Octreotide has to be Mixed and Given Correctly

10-11-12

I went to the Infusion Center for my Octreotide shot today. I go in every two weeks to get an injection of 20mg of a long-acting shot of Octreotide, but today I went in with my husband driving and me leaning on my walker. I usually drive myself in, and I might use a cane just to help me traverse the large, open spaces more securely. I rarely use a walker.

Between September 27 and November 21 of 2012, I learned two things are very important in getting good treatment in the infusion center:
(1.) I need a medical assistant who understand that my vitals need to be taken promptly after I arrive. Then the order needs to be faxed to the pharmacy as soon as possible.
(2.) Also, an RN needs to be ready to give the injection as soon as it arrives. Sometimes this is facilitated by having a terrific medical assistant who has an RN ready when the Octreotide arrives.

On September 27, the lovely assistant Juliana was not working when I got to the Infusion Center. I had arrived when she was at lunch. The Center was busy, so I didn't protest when I sat there over 30 minutes without having my bp, pulse, etc. checked.

Then a medical assistant I had never seen before was standing in the doorway shaking my syringe back and forth!

I said, "My shot is here, and you haven't even taken my vitals yet!?"

She didn't seem to know anything about taking my vitals...

To make a long story short, I got sick before the next injection because the medication was delayed about 10 minutes after the pharmacy technician arrived with the shot. The "sickness" is an unusual weakness that began on Monday and lasted until Friday. I could not do my usual chores. My husband drove me to the grocery store and I walked around using my walker to lean on and to hold a few groceries. At one point I was so weak that my arms could not hold on to a jar of jam, and I asked my spouse to put it in the grocery cart.

Continuing this on November 24, 2012: the next three treatments were completely different. Juliana and Ermalinda teamed up to make sure my shots were given exactly as they should be done. Juliana would get my vitals in 10 or 15 minutes after I arrived; the order was faxed to the pharmacy; the injection was given about two minutes after it arrived, and I was out of there in 45 minutes.

So, getting a couple staff members on your side is very helpful.

I hope you are well. In the USA we are approaching winter and the Holiday Season. To my friends in Australia I hope your Christmas is great and your BBQ is delicious. Happy days!

Sharon

The Summer of 2012

In southern California this has been a pleasant summer. We live in a hot area where temperatures usually reach 105-110 F for several days each year. The rest of the summer always has many weeks with highs 95-104. This year we have had a mild summer so far with many days of only 92-94 F. It has been pleasant enough in the evening for us to open doors and windows to let the cool breeze in after 7:00 pm. I have prayed for the states in the middle of the USA where they have been experiencing many weeks over 105 F.

This week we have entered our really hot time with highs from 105-107 F.  It is good that I have become a nightowl in retirement; I do one load of laundry in the morning and the rest is done after 9:00 pm. This is just to conserve energy during the hottest hours. We are allowed to use power when we need it and, unlike Los Angeles County, we can water our plants any day of the week. My personal opinion is that our summers are shifting to later in the year; I think we will be hot August to October. 

Therefore, since the weather has been mild, I have been doing well. One of my most anoying symptoms of carcinoid is the heat and sweating on my head and back. If I can keep the house cool, I not as uncomfortable or as dehydrated. However, I have started a few new symptoms in the last two months. I believe they are from both Sjogren's Syndrome and carcinoid.

     1. My feet are tingling from exposure to cool temperatures. I have worn socks to bed for years so I can sleep without waking up due to cold feet. For five years I have worn socks all over the house day and night. Last month I finally realized my feet have an unusual sensitivity to cold; they feel irritated by cool temps around them. My rheumatologist called it tingling and had the nerves in my feet tested just two days ago. My feet and toes responded well to the stimuli, so I think it is the neuropathy due to Sjogren's. I  have already gone through the sensation of burning feet about 10 years ago.

     2. My hair is falling out in a new way. Since surgery and going on Octreotide, I have had thinning hair so that when I parted my hair the parts were 1/2 inch wide. For six months I have been losing hair in larger amounts. I can't see what is going on with my scalp except on the sides. Yesterday I saw a round bald spot about 5/8 inch wide. I think that is probably an autoimmune problem, so I will ask the rheumatologist about it when I find out about the nerve test.

     3. The amount of my body that gets too hot increased. I can now get hot on the top of my arm, just as if I was wearing cap-sleeved blouse made of heat. That's gotta be from carcinoid.

The amount of medication I am presently getting is a 20mL shot of Octreotide every 14 days at the medical center and a 100 microgram shot of Octreotide Acetate aqueous twice a day at home.

So this is how I am 5 years after my first tumor began to develop. Thank God for the slow prgression of my disease. My energy level is much the same as my last blog stated. I have to pick my battles, as they say. I can do some things and not others, but that is OK.

Love,
Sharon

The Month of May

May has been the month when I needed to increase my medication. Last month I needed to supplement  my Octreotide LAR with shots at home only for a few days before and a few days after my treatments. During May I gradually added one shot per day, until I am now on one injection every morning and one every night.

My injections are 0.1 mcg of Octreotide Acetate (aqueous) in a pre-filled 1mL syringe. I increased my meds to 2 shots when I had symptoms of waking up hot, sweaty, and with that feeling of "increased bowel motility". First, I began taking one shot every morning because I don't like the feeling of having my back on fire while I'm on my computer in the evening. That feeling has disappeared this month.

So this is just a report to say that things continue to be good. I had a very good April as my strength increased from a rough episode in December and January. I am not really strong compared to going out and doing things as much as other people do, but I can garden and walk Spunky. Last week I was able to take Spunky on one of our long walks like we did a couple years ago; so that is good. On the other hand, we went to San Diego over Memorial Day weekend, and I can only walk around for about three hours. I can go out for the afternoon or the evening, so I have to decide what I really want to do.

One goal I have had for a few years was accomplished this month. The man (Jeff) who takes care of our lawn created a planter in front of our yard. No bricks involved. He created a curved shape for me and filled it in with plants from elsewhere in the yard. Our yard in front of the house looks quite traditional: roses, a fern, lacy hydrangeas, and a type of heather.  The side yard that Jeff landscaped about five years ago has Allium, peach daylilies, and other things I had never planted. I wanted the front planter to integrate the two looks.

So the new planter looks great! Jeff used a deep red daylily, a peach one, some heather, pink roses and Allium to pull it all together. So that is a goal fulfilled from my post about "You can't Change everything, but you can Change Some Things."

Sharon

A Very Good Prognosis

For several months I have subscribed to a service provided by ACOR. (That's an American Cancer group that sponsors an email list for various cancers.) It is a list for carcinoid patients and their caregivers to write each other and write Dr. Eugene Woltering, who is a carcinoid expert at LSU. He has a team of doctors, nurses, dietitians and others at Kenner, Louisiana.

The carcinoid patients share information about their particular case, and write about ideas that have helped them. It was from this group I learned that my dose of Octreotide LAR could be split in half. I found another woman whose metastatic tumor in her liver shrank after she began Octreotide treatment, and is so small that it cannot be seen in scans; so I am not alone. It's quite amazing for me to be able to address a question to an expert who has seen over 1000 carcinoid patients. He, also, has access to data from many more patients, and publishes about neuroendocrine cancer.

Therefore, on April 3 this year, I decided to ask Dr. Woltering what my prognosis is. I had been reading other's posts for months, hoping to see anything similar to mine. However, no one else had a primary tumor in the same location as mine, so I went ahead and asked him.

My email:
Subject: Dr. W Ever Seen a Metastatic Microtumor in Proximal Duodenum?

Dear Dr. Woltering,
I'm in good condition right now. My primary tumor (0.7 mm) was removed in 2008, and the small metastasis in the "dome of the liver" seems to be kept calm by Octreotide most months.

I'm just curious if you've had any experience with a foregut tumor in the prox. duodenum? Is the prognosis about the same as for midgut tumors? I've seen information that my odds are better on one hand, and that they are worse because they are microtumors, on the other hand.

I have been helped by your advice to break up my 40 mg of Octreotide LAR into 2 shots per month. Thank you.

God bless,
Sharon

The answer from Dr. Woltering was "Way better prognosis."

So I figure I'm good for the next 20 years. I didn't say things would always be good for 20 years, but there is a brochure that says carcinoid patients can live for 20 years. (I met a couple on the Internet.) If I have a way better prognosis than the typical carcinoid patient, I'm going for 20 beyond the 5 years I've already had!

Thank you very much!