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!
Thursday, April 19, 2012
Friday, January 27, 2012
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.
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.
Tuesday, December 27, 2011
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.
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.
Monday, December 19, 2011
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.
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.
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.)
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