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.
Monday, December 19, 2011
Saturday, December 17, 2011
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.
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.
Friday, November 11, 2011
Welcome to This Heart of Mine
Hi,
This is a song I discovered a couple years ago when I heard Shaun Groves perform at a Christian Music Festival in Del Mar, California. The festival is called Spirit West Coast. It is the only song I have ever found that is similar to what I experienced when I gave my whole heart over to God in 2007.
I had accepted Christ as my Savior, been filled with the Holy Spirit, and had been baptised in the Holy Spirit years ago. However, I had never let go of wanting to control my own life, instead of handing it over to God. One day I finally let go of wanting to hang on to my health, my daughter, and my Dad. I had been afraid that God would take those things away from me, if I let Him have them. My Dad and my daughter are still here. My health is worse, but I benefit from being in God's will for my life, rather than trying to figure out everything for myself.
This song by Shaun Groves speaks about letting God into all the corners and closets of our life. It can be found on UTube with Shaun singing the lyrics.
Welcome Home
By Shaun Groves c 2001 New Spring Publishing Inc./ASCAP
Take me, make me
All You want me to be
That’s all I’m asking, all I’m asking.
Welcome to this heart of mine
I’ve buried under prideful vines
Grown to hide the mess I’ve made
Inside of me. Come decorate, Lord.
Open up the creaking door
And walk upon the dusty floor
Scrape away the guilty stains
Until no sin or shame remain.
Spread your love upon the walls
And occupy the empty halls
Until the man I am has faded.
No more doors are barricaded.
Chorus: Come inside this heart of mine
It’s not my own. Make it home.
Come and take this heart and make it all Your own
Welcome home.
Take a seat, pull up a chair.
Forgive me for the disrepair
And the souvenirs from floor to ceiling
Gathered in my search for meaning.
Ev’ry closet’s filled with clutter
Messes yet to be discovered.
I’m overwhelmed, I understand
I can’t make this place all that You can.
I took the space you placed in me
Redecorated in shades of greed
And I made sure every door stayed locked
Every window blocked and still You knocked.
Take me, make me
All you want me to be
That’s all I’m asking,
All I’m asking.
This is a song I discovered a couple years ago when I heard Shaun Groves perform at a Christian Music Festival in Del Mar, California. The festival is called Spirit West Coast. It is the only song I have ever found that is similar to what I experienced when I gave my whole heart over to God in 2007.
I had accepted Christ as my Savior, been filled with the Holy Spirit, and had been baptised in the Holy Spirit years ago. However, I had never let go of wanting to control my own life, instead of handing it over to God. One day I finally let go of wanting to hang on to my health, my daughter, and my Dad. I had been afraid that God would take those things away from me, if I let Him have them. My Dad and my daughter are still here. My health is worse, but I benefit from being in God's will for my life, rather than trying to figure out everything for myself.
This song by Shaun Groves speaks about letting God into all the corners and closets of our life. It can be found on UTube with Shaun singing the lyrics.
Welcome Home
By Shaun Groves c 2001 New Spring Publishing Inc./ASCAP
Take me, make me
All You want me to be
That’s all I’m asking, all I’m asking.
Welcome to this heart of mine
I’ve buried under prideful vines
Grown to hide the mess I’ve made
Inside of me. Come decorate, Lord.
Open up the creaking door
And walk upon the dusty floor
Scrape away the guilty stains
Until no sin or shame remain.
Spread your love upon the walls
And occupy the empty halls
Until the man I am has faded.
No more doors are barricaded.
Chorus: Come inside this heart of mine
It’s not my own. Make it home.
Come and take this heart and make it all Your own
Welcome home.
Take a seat, pull up a chair.
Forgive me for the disrepair
And the souvenirs from floor to ceiling
Gathered in my search for meaning.
Ev’ry closet’s filled with clutter
Messes yet to be discovered.
I’m overwhelmed, I understand
I can’t make this place all that You can.
I took the space you placed in me
Redecorated in shades of greed
And I made sure every door stayed locked
Every window blocked and still You knocked.
Take me, make me
All you want me to be
That’s all I’m asking,
All I’m asking.
Sunday, November 6, 2011
PRRT Peptide Receptor Radionuclide Therapy
PRRT is a therapy to treat neuroendocrine tumors that has been used for several years (possibly a decade) in Europe. It uses radioactive elements attached to Octreotide to shrink the tumors. This treatment works because most neuroendocrine tumors have receptors that bind the naturally occurring chemical somatostatin. Octreotide is simply a synthetic version of somatostatin, so Octreotide goes straight to NETs just like somatostatin would.
Somatostatin is a naturally calming compound. When it goes to the cell membrane of a carcinoid cell, it attaches to its receptors on the cell membrane. Then it makes the cell slow down and not produce so much of the neurotransmittors, peptides, or hormones that the tumor usually makes. Therefore, somatostatin is part of a feedback mechanism that tells cells that their secretions are not necessary, so the cells decrease making the secretions that incidentally make carcinoid patients sick.
Since it is a somatostatin analog, Octreotide goes naturally to carcinoid cells, and when a radionuclide is attached to Octreotide then the radiation affects the carcinoid tumor. There are three different radionuclides that have been used in PRRT: Indium-111, Yttrium-90, and Lutetium-177. One of the reasons to use one of the radionuclides versus another is that they have different ranges of penetration.
The doctors use the radionuclide that will penetrate the tumor, but not destroy normal tissue that is around the tumor. Indium-111 has the shortest range of penetration; Lutetium-177 has a range of 2mm; and Yttrium-90 has a range of 12mm. There is more information about PRRT on the Caring for Carcinoid Foundation website at www.caringforcarcinoid.org/PRRT.
The use of Gallium-68 DOTATE PET/CT and PRRT is so new that scientists just had their first conference June 23-26, 2011 at Bad Berka, Germany. Patients are considered for PRRT if their scans show an inoperable tumor(s) that can be measured on the scans, or if their symptoms are not well managed by Sandostatin or Octreotide therapy. This website contains information for patients who want to have PRRT at Bad Berka, Germany: http://www.prrtinfo.org/.
PRRT requires a series of treatments. Reading the accounts of patients (on Cancer Compass) who went to Rotterdam for PRRT reported that they would go for one week at a time, and stay at a local hotel. The treatment would take place at a medical center to which they returned several days in a row. The patients would have to stay over the weekend to make sure they were well enough to travel, then fly home on Monday. A couple years ago people were writing that they would return home for a couple months before returning for treatments two through four. Results were usually very good, with tumors shrinking and symptoms being reduced.
However, I have learned this year that PRRT can have side effects that include leukemia and bone marrow toxicity. The leukemia was written as an effect that can show up later in life, but a woman suffering from bone marrow toxicity had it happen immediately after her PRRT treatment. Her bone marrow was not making the proper amount of platelets and red blood cells, but she was being treated for the condition and was recovering. This just reminds us that every treatment has side effects, so we need to know what they are and how to fight them.
There isn't much data in the USA, yet, on PRRT. However, this weekend (11-11-11) there is a conference at MD Anderson Medical Center in Houston, Texas, under the leadership of a Dr. Lao, about the progress they have made on doing PRRT in this country. Possibly, next week I can report on a date for PRRT to be available to us without a flight across the ocean.
Update: Well, there is no date for PRRT in the US. There are still hoops for the doctors and universities to jump through before the therapy is available in the USA. If you would like to see a synopsis of what happened at the conference at MD Anderson Medical Center, see this blog www.lucysnoidblog.blogspot.com . Lucy was at the conference and she has a great account of how PRRT works and why it is not available here.
Praying for the best possible result,
Sharon
Somatostatin is a naturally calming compound. When it goes to the cell membrane of a carcinoid cell, it attaches to its receptors on the cell membrane. Then it makes the cell slow down and not produce so much of the neurotransmittors, peptides, or hormones that the tumor usually makes. Therefore, somatostatin is part of a feedback mechanism that tells cells that their secretions are not necessary, so the cells decrease making the secretions that incidentally make carcinoid patients sick.
Since it is a somatostatin analog, Octreotide goes naturally to carcinoid cells, and when a radionuclide is attached to Octreotide then the radiation affects the carcinoid tumor. There are three different radionuclides that have been used in PRRT: Indium-111, Yttrium-90, and Lutetium-177. One of the reasons to use one of the radionuclides versus another is that they have different ranges of penetration.
The doctors use the radionuclide that will penetrate the tumor, but not destroy normal tissue that is around the tumor. Indium-111 has the shortest range of penetration; Lutetium-177 has a range of 2mm; and Yttrium-90 has a range of 12mm. There is more information about PRRT on the Caring for Carcinoid Foundation website at www.caringforcarcinoid.org/PRRT.
The use of Gallium-68 DOTATE PET/CT and PRRT is so new that scientists just had their first conference June 23-26, 2011 at Bad Berka, Germany. Patients are considered for PRRT if their scans show an inoperable tumor(s) that can be measured on the scans, or if their symptoms are not well managed by Sandostatin or Octreotide therapy. This website contains information for patients who want to have PRRT at Bad Berka, Germany: http://www.prrtinfo.org/.
PRRT requires a series of treatments. Reading the accounts of patients (on Cancer Compass) who went to Rotterdam for PRRT reported that they would go for one week at a time, and stay at a local hotel. The treatment would take place at a medical center to which they returned several days in a row. The patients would have to stay over the weekend to make sure they were well enough to travel, then fly home on Monday. A couple years ago people were writing that they would return home for a couple months before returning for treatments two through four. Results were usually very good, with tumors shrinking and symptoms being reduced.
However, I have learned this year that PRRT can have side effects that include leukemia and bone marrow toxicity. The leukemia was written as an effect that can show up later in life, but a woman suffering from bone marrow toxicity had it happen immediately after her PRRT treatment. Her bone marrow was not making the proper amount of platelets and red blood cells, but she was being treated for the condition and was recovering. This just reminds us that every treatment has side effects, so we need to know what they are and how to fight them.
There isn't much data in the USA, yet, on PRRT. However, this weekend (11-11-11) there is a conference at MD Anderson Medical Center in Houston, Texas, under the leadership of a Dr. Lao, about the progress they have made on doing PRRT in this country. Possibly, next week I can report on a date for PRRT to be available to us without a flight across the ocean.
Update: Well, there is no date for PRRT in the US. There are still hoops for the doctors and universities to jump through before the therapy is available in the USA. If you would like to see a synopsis of what happened at the conference at MD Anderson Medical Center, see this blog www.lucysnoidblog.blogspot.com . Lucy was at the conference and she has a great account of how PRRT works and why it is not available here.
Praying for the best possible result,
Sharon
Wednesday, October 26, 2011
What's Happening in This Blog
I enjoy looking at the statistics for the blog to see what people are reading, and what countries they are from. The USA is the leading county most weeks, but sometimes I will have had several readers from Russia, Germany or Romania, so those countries will have the most views on certain days. I always have some viewers from Canada, but not very often from the UK this year. These are not all the countries, but they include Slovenia, Hungary, Macedonia, India, Brazil, Mexico, Italy Australia, Austria, and China.
Some of you look at the blog right away after I write something new, and I try to see where you are. Sometimes those people are in Russia, Germany or the USA. Thank you for your loyalty. The three followers on "Journey to Joy" are my cousin, Debbi, and my sisters. Thank you ladies for your love.
What are people reading? The most commonly read post is the one about Welchol from 2010. Last year and earlier this year, the most common post was the one about "What happens during an Octreoscan?" I think there are more doctors talking about Welchol as a way to combat diarrhea, so patients go online to find out information. Some patients have concerns about Welchol; they ask if it affects their cognitive skills, and if if it affects their heart rate, etc.
I have not had any ill effects that I can put down as being caused by Welchol. At the time I was taking it every day in November 2010, I was in desperate need of stopping diarrhea, so I didn't notice side effects. Now I use Welchol once or twice a week, and don't notice any problems. It does seem to work one hour after I take it, and usually stops all action for 24-30 hours. Once recently, it only held for 10 hours, but that was long enough for me to do what I needed to do that day.
Lately, I have joined the email list for ACOR carcinoid. It's going to help me get more information about other types of scans and treatments. There are not too many new things around, but Vanderbilt Neuroendocrine Center in Nashville, Tennessee has the new scan: 68-Gallium PET/CT. It was the first US facility to get FDA approval to use 68-Gallium to diagnose neuroendocrine tumors. The Gallium scan is also at the University of Iowa.
Some of you look at the blog right away after I write something new, and I try to see where you are. Sometimes those people are in Russia, Germany or the USA. Thank you for your loyalty. The three followers on "Journey to Joy" are my cousin, Debbi, and my sisters. Thank you ladies for your love.
What are people reading? The most commonly read post is the one about Welchol from 2010. Last year and earlier this year, the most common post was the one about "What happens during an Octreoscan?" I think there are more doctors talking about Welchol as a way to combat diarrhea, so patients go online to find out information. Some patients have concerns about Welchol; they ask if it affects their cognitive skills, and if if it affects their heart rate, etc.
I have not had any ill effects that I can put down as being caused by Welchol. At the time I was taking it every day in November 2010, I was in desperate need of stopping diarrhea, so I didn't notice side effects. Now I use Welchol once or twice a week, and don't notice any problems. It does seem to work one hour after I take it, and usually stops all action for 24-30 hours. Once recently, it only held for 10 hours, but that was long enough for me to do what I needed to do that day.
Lately, I have joined the email list for ACOR carcinoid. It's going to help me get more information about other types of scans and treatments. There are not too many new things around, but Vanderbilt Neuroendocrine Center in Nashville, Tennessee has the new scan: 68-Gallium PET/CT. It was the first US facility to get FDA approval to use 68-Gallium to diagnose neuroendocrine tumors. The Gallium scan is also at the University of Iowa.
Next week I am going to be doing more research on the Gallium scan and on PRRT. PRRT is the Peptide Receptor Radionuclide Therapy that is not FDA approved yet. It has been in Europe for a decade. People write about going to Rotterdam or Bad Berka for treatment and getting much better. It has been tested in Houston, Texas for about 2 years. Vanderbilt wants to add it to their Neuroendocrine Center. I am holding on waiting for these procedures to be approved, and hoping they will be approved by time I need them. I am not there yet, but I trust the PRRT will be in the US in two more years. Since I have the tiny tumors that do not show up in Octreoscans, in one more year, I may be ready to go wherever there is a 68-Gallium scan available. Particularly, if my symptoms keep increasing, and no one has seen my tumor since November 2008. Four years would be a long time to go without knowing where the enemy is, and how many of them there are.
The scans are not yet available to the public at Vanderbilt University or Iowa State. It has to do with being approved by the FDA and figuring out costs. During the experimental stage, the expense of doing the scan is paid for by the state or the entity that is paying for the research.
Update 11-14-11 on Gallium-68 Availability:The FDA has 100% approved the Ga 68 scan at both sites, but they would have to give it away. The universities hope the application to the FDA for "cost recovery" will be in place soon, but it is doubtful that will happen soon because of the money involved. When Dr. Woltering asked for cost recovery for treating 135 patients with PRRT at LSU the FDA never allowed it. This is a major problem for individuals trying to do drug development in the USA.
Also, there is a limit to what tumors the Gallium scan can detect. Patients from Australia and Europe are finding that the new scans still don't detect the tumors that are the size of a match head or a pinhead. The smallest tumor a Gallium-68 scan can show is 3mm to 5mm. So my tumors may not show up on those scans, anyway. It doesn't sound like I need to plan a trip across the country any time soon.
So it looks like sometime in 2012 we may get the 68-Gallium PET/CT. I know there are people sicker than I am who need the scans done first. Some people don't know where their primary tumor was; that can impact the type of treatment they get. I hope I don't find out that I have tiny tumors scattered like salt across my liver. That last statement doesn't sound like great faith. Hmm, I think I need some scripture here.
Be anxious for nothing, but in everything by prayer and supplication with thanksgiving make your requests be made known to God. And the peace of God, which surpasses all comprehension, shall guard your minds and your hearts in Christ Jesus...And my God shall supply all your needs according to His riches in glory in Jesus Christ. Now to our God and Father be glory forever and ever. Amen. Philippians 4: 6-7, 19-20.
Sunday, October 16, 2011
This is Different
I returned to having the Octreotide LAR two days ago, having finished my Octreoscan. I got a 40mg injection, which is the higher dose of Octreotide that I have gotten since July 27.
For the last two nights I have fallen asleep suddenly with my clothes on, face unwashed and teeth unbrushed. Friday night I slept about 10 hours from 11 until 9. Then Saturday night I slept from 7:30 until 6:15.
I don't know what my tumor is dumping into my bloodstream, but I would sure like to know. This morning I just wanted to lie down and let my eyes roll back into my head. However, I knew I would be better with prayer, so I went to church.
NOTE WELL: What was happening here was an overdose of Octreotide. I had to go through this extreme weakness twice before I was at the oncologist at the same time it was happening. He realized that the overdose symptoms of Octreotide are almost the same as the disease itself. The difference is the extreme weakness caused by the drug. I adjusted my dose to one injection of 20mg every two weeks. That is suggested by Dr. Eugene Woltering of LSU, It works well for me.
I walked into church leaning on my cane and moving my feet about 10 inches at a time. Luckily, I get to park right at the front door because I bring two 80-year-old women to church. I made it to my seat and back out again. I did get some help getting to my chair.
The stuff that carcinoid does is so random. This morning I was much sicker than the 82-year-old lady that rides with me. Then about 4:00 pm I went outside and gardened for 40 minutes. I had to move very carefully, but I wanted to do something to help my daffodils bloom. Then about 9:20 tonight, I could feel the darkness closing in (so to speak). Since 7:00 pm I have been in my nightgown so I could sleep in nightclothes for the first time in 3 days.
This morning I wore my Carcinoid Awareness baseball shirt to church because I felt so bad. I did that on purpose to raise some awareness, but almost no one looks at the shirt. I guess they don't want to look at my chest. At least I pointed it out to three people who asked what was wrong. If I've got to die of this, I'll be one d*** angry dead lady if I can't get at least 100 people to know what it is.
(www.zazzle.com is the place to get shirts and caps printed for most any cause. They offer several things for carcinoid. I got 2 styles of shirts, and a little tote bag. The tote bag is not really strong enough to hold a Bible, but it can hold something smaller.)
For the last two nights I have fallen asleep suddenly with my clothes on, face unwashed and teeth unbrushed. Friday night I slept about 10 hours from 11 until 9. Then Saturday night I slept from 7:30 until 6:15.
I don't know what my tumor is dumping into my bloodstream, but I would sure like to know. This morning I just wanted to lie down and let my eyes roll back into my head. However, I knew I would be better with prayer, so I went to church.
NOTE WELL: What was happening here was an overdose of Octreotide. I had to go through this extreme weakness twice before I was at the oncologist at the same time it was happening. He realized that the overdose symptoms of Octreotide are almost the same as the disease itself. The difference is the extreme weakness caused by the drug. I adjusted my dose to one injection of 20mg every two weeks. That is suggested by Dr. Eugene Woltering of LSU, It works well for me.
I walked into church leaning on my cane and moving my feet about 10 inches at a time. Luckily, I get to park right at the front door because I bring two 80-year-old women to church. I made it to my seat and back out again. I did get some help getting to my chair.
The stuff that carcinoid does is so random. This morning I was much sicker than the 82-year-old lady that rides with me. Then about 4:00 pm I went outside and gardened for 40 minutes. I had to move very carefully, but I wanted to do something to help my daffodils bloom. Then about 9:20 tonight, I could feel the darkness closing in (so to speak). Since 7:00 pm I have been in my nightgown so I could sleep in nightclothes for the first time in 3 days.
This morning I wore my Carcinoid Awareness baseball shirt to church because I felt so bad. I did that on purpose to raise some awareness, but almost no one looks at the shirt. I guess they don't want to look at my chest. At least I pointed it out to three people who asked what was wrong. If I've got to die of this, I'll be one d*** angry dead lady if I can't get at least 100 people to know what it is.
(www.zazzle.com is the place to get shirts and caps printed for most any cause. They offer several things for carcinoid. I got 2 styles of shirts, and a little tote bag. The tote bag is not really strong enough to hold a Bible, but it can hold something smaller.)
Tuesday, September 27, 2011
Scans are Done
Hi,
"You know the Lord's got his hand on you." my friend Raquel, after finding out I've had a tumor in my liver for three years.
I have been through a new round of Octreoscans in the last week. In two days I get the results. This time the Nuclear Medicine Dept. used a new Gamma Camera that is in the new Douglas Hospital at UCI Medical Center in Orange, California. The staff is very pleased with the quality of the images produced by the camera, and hoped it would point out my tiny carcinoid tumors.
Since my symptoms have doubled in the last few months, I hope the tumors are more visible now. It would be good to know where they are located in my liver, rather than just assuming that they remain there. If I could see the tumors are concentrated in a spot on the top of my liver, I would relax, instead of wondering if they have spread out far and wide.
9/29/2011 Today I saw my surgeon about the results of the Octreoscan. The scan was the same as the last three; there is no evidence of any abnormal absorption of the radioactive Octreotide. In other words, the radiologist cannot tell where the tumor(s) is located. It's still very small, so it doesn't absorb enough of the radioactive chemical to be seen. The Octreotide in my regular medication makes the tumor(s) shrink, and then they can't be seen in the scans. I asked the surgeon about the tumors spreading while unseen. He assured me that if they were spreading, we could see them. So, I guess I shouldn't complain.
I did have a higher Chromagranin A level in my blood on the day the scans were done. For scanning, I have to go off of my daily shots of Octreotide (200mcg 3x daily). I stopped the shots Sunday night and had to stay off of them until the scans finished Friday afternoon. On Monday, I was incredibly sleepy all day. I woke up because our dog wanted to eat, but couldn't stay up, so I stayed in bed until noon, sleeping much of the time. I was sleepy and suffering from "brain fog" in the morning all week. About one o'clock in the afternoon it gets better, but I'm still sleepy a week later.
Therefore, while I was on campus waiting for the nuclear medicine scan to be done, I called my oncologist's nurse. She got me a lab slip for Chromogranin A, and I had my blood drawn. It was 107 on a scale that has the high level beginning at 95. The level in August was 67, and Sept.was 107. Being on a regular dose of Octreotide Acetate, definitely works for me.
I pray the you all will feel better today. Some relief from your symptoms courtesy of your Heavenly Father.
God bless you,
Sharon
"You know the Lord's got his hand on you." my friend Raquel, after finding out I've had a tumor in my liver for three years.
I have been through a new round of Octreoscans in the last week. In two days I get the results. This time the Nuclear Medicine Dept. used a new Gamma Camera that is in the new Douglas Hospital at UCI Medical Center in Orange, California. The staff is very pleased with the quality of the images produced by the camera, and hoped it would point out my tiny carcinoid tumors.
Since my symptoms have doubled in the last few months, I hope the tumors are more visible now. It would be good to know where they are located in my liver, rather than just assuming that they remain there. If I could see the tumors are concentrated in a spot on the top of my liver, I would relax, instead of wondering if they have spread out far and wide.
9/29/2011 Today I saw my surgeon about the results of the Octreoscan. The scan was the same as the last three; there is no evidence of any abnormal absorption of the radioactive Octreotide. In other words, the radiologist cannot tell where the tumor(s) is located. It's still very small, so it doesn't absorb enough of the radioactive chemical to be seen. The Octreotide in my regular medication makes the tumor(s) shrink, and then they can't be seen in the scans. I asked the surgeon about the tumors spreading while unseen. He assured me that if they were spreading, we could see them. So, I guess I shouldn't complain.
I did have a higher Chromagranin A level in my blood on the day the scans were done. For scanning, I have to go off of my daily shots of Octreotide (200mcg 3x daily). I stopped the shots Sunday night and had to stay off of them until the scans finished Friday afternoon. On Monday, I was incredibly sleepy all day. I woke up because our dog wanted to eat, but couldn't stay up, so I stayed in bed until noon, sleeping much of the time. I was sleepy and suffering from "brain fog" in the morning all week. About one o'clock in the afternoon it gets better, but I'm still sleepy a week later.
Therefore, while I was on campus waiting for the nuclear medicine scan to be done, I called my oncologist's nurse. She got me a lab slip for Chromogranin A, and I had my blood drawn. It was 107 on a scale that has the high level beginning at 95. The level in August was 67, and Sept.was 107. Being on a regular dose of Octreotide Acetate, definitely works for me.
I pray the you all will feel better today. Some relief from your symptoms courtesy of your Heavenly Father.
God bless you,
Sharon
Thursday, September 8, 2011
Current Chromogranin A Numbers
Hi,
My oncologist's nurse mailed me the results from my CgA check on 8/24/2011. The test was done after I had already eaten breakfast, but my blood glucose was only 91, so it wasn't very much breakfast.
Chromogranin A result 67.
Reference range: 0 to 95 ng.mL
Method: Cisboi Chromoa(TM)EIA
So that was a normal number that is believable.
The results from 7/28/2011. Also done after eating breakfast.
Chromogranin A result 96.
This was done the day after I had gotten my first injection of 40mg of Octreotide. The CgA was high, but I think it was higher before the injection. It was a time when I had feelings of intense heat in my back. Now I am not as hot, but I still heat up and perspire easily.
It's curious to me that last year I began having symptoms from Carcinoid that involved lots of diarrhea from about August 25-November 5. Then I had a nice break and was doing great at my birthday in January. Then since May 1, I have been more and more dizzy. It is more frequent and bothersome than just a month ago, and I keep forgetting to mention it. In May I began to get the really hot sweats. I have diarrhea about once a week. So the symptoms occur in cycles. Curious.
Best regards,
Sharon
My oncologist's nurse mailed me the results from my CgA check on 8/24/2011. The test was done after I had already eaten breakfast, but my blood glucose was only 91, so it wasn't very much breakfast.
Chromogranin A result 67.
Reference range: 0 to 95 ng.mL
Method: Cisboi Chromoa(TM)EIA
So that was a normal number that is believable.
The results from 7/28/2011. Also done after eating breakfast.
Chromogranin A result 96.
This was done the day after I had gotten my first injection of 40mg of Octreotide. The CgA was high, but I think it was higher before the injection. It was a time when I had feelings of intense heat in my back. Now I am not as hot, but I still heat up and perspire easily.
It's curious to me that last year I began having symptoms from Carcinoid that involved lots of diarrhea from about August 25-November 5. Then I had a nice break and was doing great at my birthday in January. Then since May 1, I have been more and more dizzy. It is more frequent and bothersome than just a month ago, and I keep forgetting to mention it. In May I began to get the really hot sweats. I have diarrhea about once a week. So the symptoms occur in cycles. Curious.
Best regards,
Sharon
Tuesday, August 30, 2011
The Voice of Truth by Casting Crowns
There is inspiration in music to help us keep going. I love this song!
"Voice of Truth" lyrics and music by Mark Hall and Steven Curtis Chapman. It was recorded by Casting Crowns. It is based on 2 Corinthians 12:7-10 and 1 Corinthians 1:20-24.
In the middle of the song it says:
"Oh what I would do to have
The kind of strength it takes to stand before a giant
With just a sling and a stone
Surrounded by the sound of a thousand warriors
Shaking in their armor
Wishing they'd have had the strength to stand
But the giant's calling out my name and he laughs at me
Reminding me of all the times before I've tried before and failed.
The giant keeps on telling me
Time and time again, 'Boy you'll never win!'
'You'll never win!'
But the stone was just the right size
To put the giant on the ground
And the waves they don't seem so high
On the top of them lookin' down
I will soar with the wings of eagles
When I stop and listen to the sound of Jesus
Singing over me.
I will choose to listen and believe the voice of truth."
I had not listened to this cd [ Casting Crowns 2003] for months, but it spoke to me this afternoon, especially the lines that say the giant laughs at me.
Then I am reminded in the chorus, " But the voice of truth tells me a different story
The voice of truth says, 'Do not be afraid!'
And the voice of truth says, 'This is for my glory!'
Out of all the voices calling out to me,
I will choose to listen and believe the voice of truth."
May God richly bless you,
Sharon
"Voice of Truth" lyrics and music by Mark Hall and Steven Curtis Chapman. It was recorded by Casting Crowns. It is based on 2 Corinthians 12:7-10 and 1 Corinthians 1:20-24.
In the middle of the song it says:
"Oh what I would do to have
The kind of strength it takes to stand before a giant
With just a sling and a stone
Surrounded by the sound of a thousand warriors
Shaking in their armor
Wishing they'd have had the strength to stand
But the giant's calling out my name and he laughs at me
Reminding me of all the times before I've tried before and failed.
The giant keeps on telling me
Time and time again, 'Boy you'll never win!'
'You'll never win!'
But the stone was just the right size
To put the giant on the ground
And the waves they don't seem so high
On the top of them lookin' down
I will soar with the wings of eagles
When I stop and listen to the sound of Jesus
Singing over me.
I will choose to listen and believe the voice of truth."
I had not listened to this cd [ Casting Crowns 2003] for months, but it spoke to me this afternoon, especially the lines that say the giant laughs at me.
Then I am reminded in the chorus, " But the voice of truth tells me a different story
The voice of truth says, 'Do not be afraid!'
And the voice of truth says, 'This is for my glory!'
Out of all the voices calling out to me,
I will choose to listen and believe the voice of truth."
May God richly bless you,
Sharon
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