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!

How is Sharon Doing in January 2012?

Hi,


When there is a new year, I think back to my perceptions of the future from my childhood. I guess by now I expected all our cars to drive themselves, after being linked to a rail (or something) on the street. I sure didn't imagine computers.

So, to bring you up to date on how I am doing... Last month I had an unexpected reaction to being on 40mg LAR of Octreotide. I had my dose increased from 30 mg to 40 mg in June or July 2011 to help with symptoms like excessive heat from the top of my head down to my sacrum. However, in December 2011 the 40 mg treatment backfired.

I was very tired on the 3rd day after my Octreotide shot and left a Christmas party early. The next day I had the horrible diarrhea that carcinoid is so famous for inflicting. I was sick 10 times. I used Welchol twice and gave myself 2 shots. It seemed like there was a halfway point where the medication slowed things down for a couple hours, and I got some rest. By midnight it was over and I got some sleep.

In the next week I became extremely weak. I should have never gone out on December 22 with just a cane to support me, but I forgot that people would be out Christmas shopping in droves. I was just getting my usual haircut, but had to walk about 200 feet from the salon back to my parked car. I was hanging onto my cane for dear life. Thank God, a kind soul in a white Honda Accord waited for me to get across a crosswalk in the parking lot and prevented other cars from running over me.

After that day, I saw my internist, and he prescribed a walker for me. I got an answer regarding what had gone wrong from my oncologist a week later. He read me a list of symptoms from his computer that sounded much like what I was experiencing. It, also, sounded lots like carcinoid cancer symptoms with the exception of the extreme weakness. They were the symptoms of having a reaction to Octreotide, my medication.

I had not expected to have problem with my cancer treatment, I just thought it was my cancer making me weak. So now we had a new puzzle to figure out. Should I change medications? Change the dose? What to do?

I went to Dr. Eugene Woltering who responds to questions patients post on the ACOR email list for carcinoid. He suggested that we split my Octreotide 40 mg LAR into two doses per month. Twenty mg every 14 days. My oncologist agreed to do that. I did not want to switch to Afinitor or another drug because Octreotide or Sandostatin is the drug of choice for carcinoid patients.

My Dream where Everything was Beautiful

This morning I had a chance to follow a dream all the way from beginning to end. Usually I wake up because the cat wants out at 6 am, or the dog gets up at 7:45, but now my husband is home because of Christmas vacation, so he takes care of the dog.


In my dream I was a young woman in a big city. I had just found a beautiful book in a bookstore. It had wood carved covers with an intricate design. The front cover had the sun in the center with sunbeams stretching out toward the corners and the spaces between were filled with designs. The back was carved, also. The wood was light colored, like maple, but it had no finish on it. In my dream it had been a book done by Picasso while he was a student, but the artwork bore no resemblance to anything I have ever seen by Picasso.


When I opened the book, I found it filled with work. I was surprised as I turned page after page. I had expected it to open, but there was not just one set of pictures, but many. How could so many pictures fit into a narrow book? I remember thinking they did not look anything like Picasso's Rose and Blue period, and there were no prints of bulls. I do remember seeing a painting of a man in blue and red clothing like Leonardo DaVinci might have painted. It was in an oval matte.
There were many other beautiful works in the book. In this part of the dream and all the way through, I kept being surprised by what I found. It was always better than what I thought it would be.


Next, I was in my thirties or forties , and I had opened a museum to house this beautiful book.
Throughout the museum I had beautiful things of all different types. There were ceramics and paintings and jewelery. Also, along side the museum pieces, I had shelves of items that patrons could buy. Where there were ceramics, I had pretty ceramics that could be bought and taken home. That way after seeing something beautiful, people could take some beauty home with them and not feel bereft after leaving the museum.

In the next scene I was walking through the museum, and entered a large high-ceilinged room where a performance was about to begin. Switchfoot was setting up to perform! My daughter has liked Switchfoot for several years, so this was amusing. I was going to watch the performance from my own chamber on the next level. I had a room that overlooked the stage, but it was deeper than a balcony. I have had trouble walking lately, so I able to recline on a chaise lounge and see the stage.

Having established that I had a private room in the museum, in the next scene, I had my family living there. It was morning, and we were all getting dressed in one of the museum's rooms. The children were cold, and we were putting on our clothing in a warmer room. There were four or five children. I didn't see them all. I just watched a boy and girl about 8 to 11 years old, pulling on their jackets over shirts or blouses. They were dressed in clothes that looked like they worked in the museum in costume from 200 years ago. My husband was getting dressed like he was going fishing. I think he had hip waders. That was funny, but it seemed like he was going out to do something he enjoyed.


In the last scene, I was getting closer to reality. I was waking up. I often do not get to this point in dreams. My real daughter, Kay, and I were shopping someplace beautiful. I think it was on our anticipated trip to Europe. My daughter was looking at items in a display and talking to a beautiful, blond sales associate the same age as she is. The items for sale were charms made from natural materials like coral. These charms were for sale along with practical items to attach them to, like key chains and nail clippers.

I remember that the metal everything was made of was like silver with a whitened finish rubbed over it. I have a necklace like that from 30 years ago. At the end of the dream Kay was debating if she should just buy the charm, without the item to attach it to, and she would attach it to a bracelet she had at home. I think the point of this part of the dream was to find beauty or to attach beauty to everyday items.


That is a value I learned about in an African Art class. Commonplace items like wrought iron tools used inside the house would be embellished with figures in the handles. A comb that I have has a woman's figure in the handle.

The theme of the dream is Beauty. I believe that our response to Beauty is actually a response to God or an anticipation of heaven. The book at the beginning of the dream is probably God's word. I suppose the museum is Heaven. I had everything there: Beauty, Music, Family, and Fun. I would like to hear your response to the dream.

Christmas Time

At Christmas time I hear the stories of others who are sometimes sad or disappointed with how their holiday is going. I never though I would say this, but I am becoming more pleased that we always had a low-key Christmas when I was a child.

We were a lower middle class family. We were not poor. My father always had a job as an electronics technician, and my parents were buying the house we lived in, and we had a car. We had a TV, but it did not always work.

For Christmas we would get a Christmas tree from the lot in the grocery store parking lot. It always seemed to be 4.5 feet tall. I would want a taller tree, but my parents said the smaller one was fine. It was always taller than I was. We had lights and ornaments and tinsel to put on the tree. I don't remember my parents ever going out to buy newer or better decorations; they didn't replace anything unless it broke. We had bubble lights that lasted many years.

We would open our presents on Christmas morning. There was just my parents and my sisters; no need to start opening gifts on Christmas Eve. We would each get about 2 presents. I remember my older sister and I getting baby dolls one year. I'm not sure if our baby sister was born yet.

Then the next year Aunt Dottie made beautiful clothes for our baby dolls. That was a total surprise, and we were very happy. It was unusual to get a gift from someone besides our parents. Another year, Aunt Jenny got us big baby dolls. I thought that was great! Now I had a big sister for my smaller doll. I named the bigger doll Carolyn and the little doll was Susie. I had a few other dolls, but I especially remember getting those two dolls at Christmas.

We would eat something nice at Christmas, maybe a chicken dinner. We probably had a big Thanksgiving dinner with a turkey, so Christmas was not so much about the food, as it was about being together and giving gifts. I remember getting jigsaw puzzles as occasional gifts, and sitting there with my Dad and my sister at our little child-sized table working on a puzzle for hours after the presents were opened.

We did not go to see other relatives on Christmas. I think my father just had one day off from work, and our family did not think it was necessary to make him drive for 3 hours so we could visit grandma or cousins. Christmas was a pleasant day spent at home enjoying each others company.

Of course, we all knew that Christmas was the day we celebrated that Jesus came here to earth to be with us. We would talk about it and put out the "manger scene" in the living room. We were at Sunday School and church every Sunday. I don't recall ever going to church on Christmas or Christmas Eve. We were at a Baptist church in the San Fernando Valley in California, and I don't even know if they had Christmas Eve services about 1960.

Take Care of Yourself

What I have learned in November and December:

If a carcinoid patient feels like she is doing too much and she ought to rest, then she should do that. No matter that friends will be disappointed that she will not be at their party, stop cooking the cocktail meatballs and go lie down. The same thing goes for Thanksgiving. The other adults can chip in and finish preparing the meal, if necessary. Go lie down.

If the patient does not do that, she risks having classic carcinoid diarrhea and spending four days in bed--or in the bathroom.

In general, I have been very weak for nearly 2 weeks. I had a wonderful 8 days just before that. I did not take my cane with me, and I was able to go Christmas shopping. I also made a big trip to Target to get food and household supplies. It's a good thing I did that because on December 16 I began getting weak.

I am afraid to go anywhere that I will have to cross a parking lot. I had to walk over 200 feet last week to get my hair cut, and had to use my cane to hold me up and propel me forward.

In 2 days I have an appointment with my internist to get a prescription for a walker and to set up a handicapped parking space. I will see my oncologist on January 4. I have been giving myself rescue shots of 100 micrograms of Octreotide 1-3 times per day. I have been having the heat from carcinoid. Also, I have been alternating between diarrhea and constipation. I think all the shots may be causing constipation.

I have an echocardiogram scheduled on December 29, so we can see if there is any heart valve damage.