Just saying hello!
I went to Cedars-Sinai Hospital in February 2015 to be evaluated again. I had an MRI and blood work done.
My husband and I returned for the results on March 12, 2015. There is no sign of carcinoid cancer. I am not relieved or worried about getting that news. I expect the cancer to stay gone. I have been healed.
Monday, April 20, 2015
Wednesday, July 16, 2014
It's Still Gone!
Hi,
I want to be clear about what happened to my tumors.
They were there for a biopsy in Dec. 2007 and 2 surgeries in 2008.
They were there after my June 27, 2008 surgery. At first, I had no symptoms of carcinoid, but 2 months after surgery the symptoms came back. I am sure they were carcinoid symptoms because I had the same symptoms in 2008 before and after the endoscopic surgery . Since the symptoms came back, I had the resection of the small intestine on June 27.
By October 2008 my lab tests for Chromogranin A started going up like they were climbing a mountain. They reached 254. Before my resection the value was only 160. In December 2008 I began taking Octreotide. Octreotide reduced the symptoms and made the cancer markers go down to 20-85 over the next few years.
So, why are my tumors gone? I asked Dr. Edward Wolin, "What did we do, drown the tumors in Octreotide?" He believes the resection removed all the tumor. He did not seem to see my Cg A levels in 2008. My oncologist at UC Irvine Medical Center told me that carcinoid can sometimes go into remission.
I know there was a tumor there. I know it is gone. I believe God healed me. He has healed me twice before, and for 6 years He was besieged with prayers for my healing, not so much from me, but from my loved ones. So He healed me again. Amen.
I want to be clear about what happened to my tumors.
They were there for a biopsy in Dec. 2007 and 2 surgeries in 2008.
They were there after my June 27, 2008 surgery. At first, I had no symptoms of carcinoid, but 2 months after surgery the symptoms came back. I am sure they were carcinoid symptoms because I had the same symptoms in 2008 before and after the endoscopic surgery . Since the symptoms came back, I had the resection of the small intestine on June 27.
By October 2008 my lab tests for Chromogranin A started going up like they were climbing a mountain. They reached 254. Before my resection the value was only 160. In December 2008 I began taking Octreotide. Octreotide reduced the symptoms and made the cancer markers go down to 20-85 over the next few years.
So, why are my tumors gone? I asked Dr. Edward Wolin, "What did we do, drown the tumors in Octreotide?" He believes the resection removed all the tumor. He did not seem to see my Cg A levels in 2008. My oncologist at UC Irvine Medical Center told me that carcinoid can sometimes go into remission.
I know there was a tumor there. I know it is gone. I believe God healed me. He has healed me twice before, and for 6 years He was besieged with prayers for my healing, not so much from me, but from my loved ones. So He healed me again. Amen.
Friday, March 28, 2014
My Cancer is Gone!
My cancer is gone. I went to Cedars-Sinai as I wrote in the last post, and had the new Gallium 68 Dotatate PET/CT done on March 5 and an MRI done a week later. There are no tumors! This new scan can find tumors down to 3 or 4 mm. I don't have any.
Dr. Wolin had to patiently explain to me why my positive tests for Chromagranin A and and Gastrin in the past were not valid. I had been on Nexium,which raises those compounds in the blood. Also, they did not keep going up and up, as they would if a tumor kept growing.Dr. Wolin did test me for other cancer markers like calcitonin, pancreastatin, and glucagon--which can be made by duodenal carcinoid tumors.
I am still trying to wrap my head around this! I will write more in April.
Dr. Wolin had to patiently explain to me why my positive tests for Chromagranin A and and Gastrin in the past were not valid. I had been on Nexium,which raises those compounds in the blood. Also, they did not keep going up and up, as they would if a tumor kept growing.Dr. Wolin did test me for other cancer markers like calcitonin, pancreastatin, and glucagon--which can be made by duodenal carcinoid tumors.
I am still trying to wrap my head around this! I will write more in April.
Thursday, March 6, 2014
I had a GALLIUM-68 Dotatoc PET/CT!
I had the famous Gallium-68 scan done yesterday at UCLA Medical Center, 200 Medical Plaza, Los Angeles. I was able to have it done because I am being cared for by Dr. Edward Wolin of Cedars-Sinai Medical Center. It was quite amazing to have something done that I have read about in www.carcinoid.org for two years. People have flown across oceans to get this done.
In an earlier post I had written about going to Dr. Oberg at Uppsala University Hospital in Uppsala, Sweden. That is not necessary because this scan works the same way. The only difference is in the radioactive element used to make the tumors light up.
When I got to the Nuclear Medicine Center, I filled out paperwork (as usual) and then went back to talk to Dr. Schiepers, the radiologist. He has worked at one of the German treatment centers that does PRRT and has helped over 3000 patients. He is a kind man who explained to me that the Gallium-68 scan can be done in a PET scanner because they used gallium, rather than the indium-111 used in an Octreoscan . I wondered why Octreoscans had a special scanner. So with the new scan, the PET and CT scans are overlapped to give a 3-D image.
The Gallium-68 scan is easy! I had the IV of the radioactive Dotatoc; drank 2 cups of berry flavored barium in an hour; and followed the technician back to the scanner. I got one more cup of barium, and we did the scan. The time for the CT was about 7 minutes, and the PET was about 25 minutes. Piece of cake! I was thanking everyone because I have waited for a scan that would find my tumor since 2009. It seemed to shrink after I began Octreotide treatment.
One new thing I know after going to Dr. Wolin, is that I have been on too much Octreotide! It has caused the weakness and some of the diarrhea I have had. I won't be doing any more rescue shots.
In an earlier post I had written about going to Dr. Oberg at Uppsala University Hospital in Uppsala, Sweden. That is not necessary because this scan works the same way. The only difference is in the radioactive element used to make the tumors light up.
When I got to the Nuclear Medicine Center, I filled out paperwork (as usual) and then went back to talk to Dr. Schiepers, the radiologist. He has worked at one of the German treatment centers that does PRRT and has helped over 3000 patients. He is a kind man who explained to me that the Gallium-68 scan can be done in a PET scanner because they used gallium, rather than the indium-111 used in an Octreoscan . I wondered why Octreoscans had a special scanner. So with the new scan, the PET and CT scans are overlapped to give a 3-D image.
The Gallium-68 scan is easy! I had the IV of the radioactive Dotatoc; drank 2 cups of berry flavored barium in an hour; and followed the technician back to the scanner. I got one more cup of barium, and we did the scan. The time for the CT was about 7 minutes, and the PET was about 25 minutes. Piece of cake! I was thanking everyone because I have waited for a scan that would find my tumor since 2009. It seemed to shrink after I began Octreotide treatment.
One new thing I know after going to Dr. Wolin, is that I have been on too much Octreotide! It has caused the weakness and some of the diarrhea I have had. I won't be doing any more rescue shots.
Friday, February 21, 2014
If You have Carcinoid that Began in the Proximal Duodenum, This is for YOU!
Wow! Feb. 18, 2014, I got to see one of the few US doctors who treat only neuroendocrine cancer patients! Dr. Edward Wolin at the Samuel Oschin Cancer Center at Cedars-Sinai Medical Center, 8700 Beverly Blvd., Los Angeles, CA 90048.
I learned lots of new stuff and scheduled a definitive scan for March 5: Gallium-68-DOTATATE PET Imaging of Neuroendocrine Tumors.
No more Octreoscans for me. They really can't find a tumor less than 1.5 cm. The Gallium-68 scan is coming to more places in the USA in a couple years, and the Octreoscan will become obsolete.
First, new information: A carcinoid tumor in the proximal duodenum is different from the common ones in the jejunum or ileum. A primary tumor in the very beginning of the small intestine happens to only 1 in one million persons. That is why I can find almost no information on my tumor. There are 3 large distinctions between this foregut tumor and the common midgut tumors:
1. The biology is completely different.
2. They make different hormones. They do not make serotonin and 5-HIAA.
3. They spread differently.
I don't know much about the first or third fact, but I learned a little about the hormones. We don't have to pour pee into orange containers for 24 hours and bring it into the lab! (In fact, doctors can do a plasma 5-HIAA test for those of you who need one.) Gastrin is a hormone that is made by the duodenal tumors. We began testing mine soon after my diagnosis. Lately it has been normal, but sometimes it goes up. We also need to be tested for Chromogranin A, and other hormones I don't know yet. I won't know the other lab tests until I have some done.
For all of us noids, Octreotide reduces the production of pancreatic enzymes like lipase and amylase. Therefore we need to be on enzyme supplements, or we have diarrhea because we lack pancreatic enzymes.
Right this minute, I am waiting to hear back from the staff at Cedars-Sinai about scheduling an Eovist MRI. Eovist is the contrast that is injected and it produces a better image than the MRIs I have had in the past. Also, I will come into the Cancer Center for fasting lab work.
I will follow up with you soon.
Love,
Sharon
I learned lots of new stuff and scheduled a definitive scan for March 5: Gallium-68-DOTATATE PET Imaging of Neuroendocrine Tumors.
No more Octreoscans for me. They really can't find a tumor less than 1.5 cm. The Gallium-68 scan is coming to more places in the USA in a couple years, and the Octreoscan will become obsolete.
First, new information: A carcinoid tumor in the proximal duodenum is different from the common ones in the jejunum or ileum. A primary tumor in the very beginning of the small intestine happens to only 1 in one million persons. That is why I can find almost no information on my tumor. There are 3 large distinctions between this foregut tumor and the common midgut tumors:
1. The biology is completely different.
2. They make different hormones. They do not make serotonin and 5-HIAA.
3. They spread differently.
I don't know much about the first or third fact, but I learned a little about the hormones. We don't have to pour pee into orange containers for 24 hours and bring it into the lab! (In fact, doctors can do a plasma 5-HIAA test for those of you who need one.) Gastrin is a hormone that is made by the duodenal tumors. We began testing mine soon after my diagnosis. Lately it has been normal, but sometimes it goes up. We also need to be tested for Chromogranin A, and other hormones I don't know yet. I won't know the other lab tests until I have some done.
For all of us noids, Octreotide reduces the production of pancreatic enzymes like lipase and amylase. Therefore we need to be on enzyme supplements, or we have diarrhea because we lack pancreatic enzymes.
Right this minute, I am waiting to hear back from the staff at Cedars-Sinai about scheduling an Eovist MRI. Eovist is the contrast that is injected and it produces a better image than the MRIs I have had in the past. Also, I will come into the Cancer Center for fasting lab work.
I will follow up with you soon.
Love,
Sharon
Wednesday, January 8, 2014
I'm going to Cedars-Sinai Medical Center in February
I have an appointment with Dr. Edward Wolin at Cedars-Sinai on February 18, 2014. After I began producing large amounts of insulin this year, I realized I needed to be with a doctor who has seem many variations of carcinoid cancer. I don't know what the tumors may stimulate next.
Also, I want to see the nutritionist for help with the diet. I have been stronger for 6 weeks since I have been avoiding foods high in tyramine and drinking coconut water daily.
The main items I want to discuss with the doctor are:
1. Will an insulin pump distribute my daily Octreotide better and keep my body more normal?
2. Seeing the nutritionist.
3. Have you treated patients with the original tumor in the proximal duodenum and how did they fare? Do you have any statistics on my cancer? I have never seen anything except that 2% of carcinoid begins in the duodenum. However, none of them ever are foregut tissue like mine were because of being just 1 inch away from the stomach. That should improve my prognosis.
4. Using a different Somatostatin Analog. Will it help to use Lanreotide or another SSA?
Also, I want to see the nutritionist for help with the diet. I have been stronger for 6 weeks since I have been avoiding foods high in tyramine and drinking coconut water daily.
The main items I want to discuss with the doctor are:
1. Will an insulin pump distribute my daily Octreotide better and keep my body more normal?
2. Seeing the nutritionist.
3. Have you treated patients with the original tumor in the proximal duodenum and how did they fare? Do you have any statistics on my cancer? I have never seen anything except that 2% of carcinoid begins in the duodenum. However, none of them ever are foregut tissue like mine were because of being just 1 inch away from the stomach. That should improve my prognosis.
4. Using a different Somatostatin Analog. Will it help to use Lanreotide or another SSA?
Sunday, December 15, 2013
The Diet and Coconut Water Makes a Difference
For more than a month I have been feeling stronger and able to do more things. I think much of it is because of how I am eating.
First of all, I have been drinking a big glass of coconut water every day which is full of potassium. About 12 ounces, sometimes more. I like the coconut water, and it delays the drinking of my daily Diet Coke.
I began drinking coconut water casually at the suggestion of a cousin during the heat of summer. I began to pursue it at the suggestion of the only other carcinoid patient I have met. We were both in the waiting room at the cancer center, and as soon as she began to talk about her case, I thought it sounded like carcinoid. I told her I had carcinoid and we talked up a storm! She suggested the water because of the potassium.
In September I began drinking coconut water every day, and I am convinced the potassium is what helped me get my strength back. I also did a little advocating at my local grocery store to carry Kern's plain coconut water. They had been stocking only the chocolate variety for a few weeks, and I kept going home empty-handed. Now I noticed the store has increased the space for the product since they began to carry only the plain variety. It is considered a health drink, so I think more people would prefer it to be plain.
As far as foods, I have continued avoiding things on the list of products high in TYRAMINE and high in SEROTONIN precursors. To avoid making serotonin, it seems we have to avoid TRYPTOPHAN. Please do some reading about this, because I am not an expert. However, I have done pretty well at avoiding "bad" foods in restaurants and at home. The difficulty came when I went to a party with wonderful food and I had no idea what had gone into its preparation.
To avoid making lots of serotonin, AVOID eating: TURKEY, CHICKEN, PAPAYA, MANGO, SWEET POTATO, CASHEWS, ALMONDS, ALMOST ALL NUTS, COTTAGE CHEESE AND MILK. This is a short list taken from an interview on Carcinoid.org.
SEROTONIN is the chemical our tumors cause to be made in large quantities that causes diarrhea, so obviously we want to avoid making lots of serotonin. I have not found that I have a big reaction to eating chicken, but I did have some diarrhea after eating a turkey dinner. I only ate a small amount of turkey (3 oz.) so I wasn't very sick.
TYRAMINE is an amino acid that goes into making the bio-active compounds that make us sick.To avoid TYRAMINE, decrease these foods: CURED MEATS (HAM, HOT DOGS, PEPPERONI); FERMENTED or AGED or PICKLED FOODS; OVERLY OLD FOOD; TAP BEER; AGED CHEESES; SOY SAUCE; SAUERKRAUT; TOFU; BOUILLON, SAUCES and GRAVY.
As food ages the amount of tyramine in it increases. Therefore, one nutritionist suggests we freeze meat on the first day that we buy it unless we are going to eat it that day. Eat fresh produce within 48 hours of purchase. I have not been able to make all these changes yet, but I got my husband to freeze most of our meat. He likes to buy in large quantities and then keep his options open. I am the one who uses the microwave to thaw meat; he just leaves the meat in the refrigerator.
When I go out to a restaurant, I have had good success with ordering fish and chips or a steak and avoiding dishes made with cheese. The only cheeses I know of that aren't aged are American cheese and Jack cheese. So I need to keep a list of aged cheeses in my purse. However, at a party I had a less pleasant outcome because everything seemed to have cheese or a variety of ingredients in it. Afterwards, I realized that I need to have an eating plan before I go to a party.
So far my plan to to load up my plate with any fresh fruit or salad that doesn't have cheese in it, eat some plain bread, and choose a simple meat. That's a little hard to do because many cooks soak meat in bouillon or a marinade containing soy sauce. The last luncheon I attended, I ate two types of salad, bread and cake. I didn't get sick, so it worked out OK.
I need to realize the food I eat at the party doesn't have to sustain me forever, and I can eat a little before I even leave home.
Good luck with eating well!
Sharon
First of all, I have been drinking a big glass of coconut water every day which is full of potassium. About 12 ounces, sometimes more. I like the coconut water, and it delays the drinking of my daily Diet Coke.
I began drinking coconut water casually at the suggestion of a cousin during the heat of summer. I began to pursue it at the suggestion of the only other carcinoid patient I have met. We were both in the waiting room at the cancer center, and as soon as she began to talk about her case, I thought it sounded like carcinoid. I told her I had carcinoid and we talked up a storm! She suggested the water because of the potassium.
In September I began drinking coconut water every day, and I am convinced the potassium is what helped me get my strength back. I also did a little advocating at my local grocery store to carry Kern's plain coconut water. They had been stocking only the chocolate variety for a few weeks, and I kept going home empty-handed. Now I noticed the store has increased the space for the product since they began to carry only the plain variety. It is considered a health drink, so I think more people would prefer it to be plain.
As far as foods, I have continued avoiding things on the list of products high in TYRAMINE and high in SEROTONIN precursors. To avoid making serotonin, it seems we have to avoid TRYPTOPHAN. Please do some reading about this, because I am not an expert. However, I have done pretty well at avoiding "bad" foods in restaurants and at home. The difficulty came when I went to a party with wonderful food and I had no idea what had gone into its preparation.
To avoid making lots of serotonin, AVOID eating: TURKEY, CHICKEN, PAPAYA, MANGO, SWEET POTATO, CASHEWS, ALMONDS, ALMOST ALL NUTS, COTTAGE CHEESE AND MILK. This is a short list taken from an interview on Carcinoid.org.
SEROTONIN is the chemical our tumors cause to be made in large quantities that causes diarrhea, so obviously we want to avoid making lots of serotonin. I have not found that I have a big reaction to eating chicken, but I did have some diarrhea after eating a turkey dinner. I only ate a small amount of turkey (3 oz.) so I wasn't very sick.
TYRAMINE is an amino acid that goes into making the bio-active compounds that make us sick.To avoid TYRAMINE, decrease these foods: CURED MEATS (HAM, HOT DOGS, PEPPERONI); FERMENTED or AGED or PICKLED FOODS; OVERLY OLD FOOD; TAP BEER; AGED CHEESES; SOY SAUCE; SAUERKRAUT; TOFU; BOUILLON, SAUCES and GRAVY.
As food ages the amount of tyramine in it increases. Therefore, one nutritionist suggests we freeze meat on the first day that we buy it unless we are going to eat it that day. Eat fresh produce within 48 hours of purchase. I have not been able to make all these changes yet, but I got my husband to freeze most of our meat. He likes to buy in large quantities and then keep his options open. I am the one who uses the microwave to thaw meat; he just leaves the meat in the refrigerator.
When I go out to a restaurant, I have had good success with ordering fish and chips or a steak and avoiding dishes made with cheese. The only cheeses I know of that aren't aged are American cheese and Jack cheese. So I need to keep a list of aged cheeses in my purse. However, at a party I had a less pleasant outcome because everything seemed to have cheese or a variety of ingredients in it. Afterwards, I realized that I need to have an eating plan before I go to a party.
So far my plan to to load up my plate with any fresh fruit or salad that doesn't have cheese in it, eat some plain bread, and choose a simple meat. That's a little hard to do because many cooks soak meat in bouillon or a marinade containing soy sauce. The last luncheon I attended, I ate two types of salad, bread and cake. I didn't get sick, so it worked out OK.
I need to realize the food I eat at the party doesn't have to sustain me forever, and I can eat a little before I even leave home.
Good luck with eating well!
Sharon
Sunday, November 24, 2013
Diet for Carcinoid
For three weeks I have been learning to follow a diet that is suggested for carcinoid patients. It is lower in two amino acids that are used to make the bio-active compounds that our tumors generate. The amino acids are tyramine and tryptophan. Tryptophan breaks down and increases the serotonin that our tumors create.
Since I now can see that my tumors create excessive amounts of insulin; serotonin; Chromogranin A; histamines and others; I am trying harder to regulate how I feel.
For the low-tyramine diet I have been eating less of the following things: caffeine, chocolate, aged cheese, all cured meats, and pickled or smoked foods. One of the basic ideas in this diet is that foods gradually breakdown after we get them home, therefore the amount of tyramine increases as the food gets older. One nutritionist suggested eating all fresh produce within 48 hours of buying it. Also, either eat meat the first day it comes home or freeze it. Just putting fruits and vegetables in the refrigerator does not slow down the production of tyramine.
I can't quite eat everything while it is fresh, but I have been eating less chocolate and drinking less caffeinated tea. (I don't drink coffee because I just don't care for it.) I have 1 cup of caffeinated tea in the morning and the others cups are decaffeinated. I also have only one soda per day. Today at a taco restaurant I got just one glass of iced tea, instead of the usual two. I have not eaten any ham or hot dogs for a month. At a restaurant, I did not chose the meal that had chicken with four cheeses even though it sounded good. I didn't know if they were aged cheeses.
Regarding decreasing serotonin, I have mostly been eating less turkey and chicken. We had our Thanksgiving in America, where a turkey dinner is traditional. I tried to eat only two or three ounces,but I was slightly ill on the next day. I had abdominal pain and diarrhea--which I have only had occasionally lately. So it seemed like there was a correlation between eating the turkey and having problems. If I had eaten my usual portion, I would have been sicker.
Researching a low-serotonin diet required me to look at the diets telling people how to raise serotonin---I guess it's good for some people!
I have been feeling much better since I began following the diet. I do not have the weakness that plagued me from September 15 to November 15. Instead of having 40% to 60% of my energy, I am functioning at 80% of normal. Now I have to get over being so lazy, and get back to doing more for my family. They did so much for me while I was ill.
I will write more about this next later. If you are interested, a low-tyramine diet or low-serotonin diet can be researched on the Internet.
Since I now can see that my tumors create excessive amounts of insulin; serotonin; Chromogranin A; histamines and others; I am trying harder to regulate how I feel.
For the low-tyramine diet I have been eating less of the following things: caffeine, chocolate, aged cheese, all cured meats, and pickled or smoked foods. One of the basic ideas in this diet is that foods gradually breakdown after we get them home, therefore the amount of tyramine increases as the food gets older. One nutritionist suggested eating all fresh produce within 48 hours of buying it. Also, either eat meat the first day it comes home or freeze it. Just putting fruits and vegetables in the refrigerator does not slow down the production of tyramine.
I can't quite eat everything while it is fresh, but I have been eating less chocolate and drinking less caffeinated tea. (I don't drink coffee because I just don't care for it.) I have 1 cup of caffeinated tea in the morning and the others cups are decaffeinated. I also have only one soda per day. Today at a taco restaurant I got just one glass of iced tea, instead of the usual two. I have not eaten any ham or hot dogs for a month. At a restaurant, I did not chose the meal that had chicken with four cheeses even though it sounded good. I didn't know if they were aged cheeses.
Regarding decreasing serotonin, I have mostly been eating less turkey and chicken. We had our Thanksgiving in America, where a turkey dinner is traditional. I tried to eat only two or three ounces,but I was slightly ill on the next day. I had abdominal pain and diarrhea--which I have only had occasionally lately. So it seemed like there was a correlation between eating the turkey and having problems. If I had eaten my usual portion, I would have been sicker.
Researching a low-serotonin diet required me to look at the diets telling people how to raise serotonin---I guess it's good for some people!
I have been feeling much better since I began following the diet. I do not have the weakness that plagued me from September 15 to November 15. Instead of having 40% to 60% of my energy, I am functioning at 80% of normal. Now I have to get over being so lazy, and get back to doing more for my family. They did so much for me while I was ill.
I will write more about this next later. If you are interested, a low-tyramine diet or low-serotonin diet can be researched on the Internet.
November 2013
How have you been this month? I'm glad I am better.
From approximately September 15 to November 15, I have been facing new challenges from carcinoid. My tumors have been producing widely varying amounts of either glucagon or insulin. The low blood sugar is frightening, but what I hate the most is the general weakness I have. I stayed home most days because I was afraid of falling if I went to the grocery store, for example. I really appreciate my husband for driving me to doctor appointments, and doing the shopping.
I have been checking my blood sugar twice a day and giving myself Octreotide shots on a tight schedule every 12 hours. That has kept my sugars from wide variations. I had experienced sugar at 54 on October 3rd; 178 fasting on October 6th; and 59 on October 7. Once my internist saw that, he had me make sure to take all my shots and do it on schedule.
From October 14 through October 28, I gave myself shots every 12 hours, and the wide variations in sugar stopped. There were no exceptions. I am keeping a diary of my symptoms and what I eat. I noticed my face was red and I was hot and sweaty when I woke up, so I shifted my shots around so I was up at 4:00 am to have the Octreotide in my system before I went anywhere. Then I went back to sleep. It helped me tremendously for a couple days. Now I'm not sure it made a lasting difference, but it is something to consider when we are facing many symptoms. Find the best time of day to take your shots.
If you are interested in the numbers, my fasting sugar tends to be high, probably from genetics and from being on Octreotide. My fasting sugar on 2 regular shots ranged from 87 to 113. The day it was 113, I had eaten french fries at dinner the night before. I don't eat fries very often.
Sooooo, having been successful at stopping the big variations in blood sugar by taking 2 shots per day, I decided to try 3 shots per day. My prescription is written for 3 shots per day, just in case I suddenly got worse and needed to use more medicine. From October 29 through November 13, I took 3 shots a day and got these fasting blood sugars: 99-117. The last several days, my fasting sugar was 110, 110, 117,112, 109, and 117. You can see why I went back to giving myself shots every 12 hours.
For a week I have been feeling much stronger. I have been to a play, shopping, and church services without needing my walker. Besides having the blood sugar more regular, I am feeling better all over.
From approximately September 15 to November 15, I have been facing new challenges from carcinoid. My tumors have been producing widely varying amounts of either glucagon or insulin. The low blood sugar is frightening, but what I hate the most is the general weakness I have. I stayed home most days because I was afraid of falling if I went to the grocery store, for example. I really appreciate my husband for driving me to doctor appointments, and doing the shopping.
I have been checking my blood sugar twice a day and giving myself Octreotide shots on a tight schedule every 12 hours. That has kept my sugars from wide variations. I had experienced sugar at 54 on October 3rd; 178 fasting on October 6th; and 59 on October 7. Once my internist saw that, he had me make sure to take all my shots and do it on schedule.
From October 14 through October 28, I gave myself shots every 12 hours, and the wide variations in sugar stopped. There were no exceptions. I am keeping a diary of my symptoms and what I eat. I noticed my face was red and I was hot and sweaty when I woke up, so I shifted my shots around so I was up at 4:00 am to have the Octreotide in my system before I went anywhere. Then I went back to sleep. It helped me tremendously for a couple days. Now I'm not sure it made a lasting difference, but it is something to consider when we are facing many symptoms. Find the best time of day to take your shots.
If you are interested in the numbers, my fasting sugar tends to be high, probably from genetics and from being on Octreotide. My fasting sugar on 2 regular shots ranged from 87 to 113. The day it was 113, I had eaten french fries at dinner the night before. I don't eat fries very often.
Sooooo, having been successful at stopping the big variations in blood sugar by taking 2 shots per day, I decided to try 3 shots per day. My prescription is written for 3 shots per day, just in case I suddenly got worse and needed to use more medicine. From October 29 through November 13, I took 3 shots a day and got these fasting blood sugars: 99-117. The last several days, my fasting sugar was 110, 110, 117,112, 109, and 117. You can see why I went back to giving myself shots every 12 hours.
For a week I have been feeling much stronger. I have been to a play, shopping, and church services without needing my walker. Besides having the blood sugar more regular, I am feeling better all over.
Thursday, October 24, 2013
A New Activity from My Tumor--Goofy Insulin Levels
As the title suggests my carcinoid tumor or tumors are now affecting my insulin levels. It began several months ago with an episode at my friend Janet's house.
I began to have my usual symptoms from low blood sugar about 12 noon: hunger, weakness, sweating. Janet offered me some crackers to eat, but I rapidly began to feel nausea and a hint of diarrhea coming on. Janet asked if I wanted to lie down in her spare room, but I thought I had better just get home in case the diarrhea began. You know how it is with carcinoid, and I didn't want to be at Janet's house for hours afraid to get in the car.
Basically, without eating anything my condition began to self-correct. I checked with myself every mile as I drove to see if I should pull off the road, but I never got any worse. It is an 8 mile drive, and I began to feel a little less shaky about 4 miles along the way. Another half mile and I was less sweaty. When I had driven 5 or 6 miles toward home, I was much better. I felt hungry and like my blood sugar was about 75, but not like it was 55, and I was shaking.
After hearing this story, my internist prescribed a glucose monitor for me in August, but I didn't use it much until the middle of September when my sugar did a really fast drop down to 54. It was about 3 minutes from just thinking I needed something to eat, to shaking and sweating again.
I had another sugar drop down to 59, and one Sunday day I had morning blood sugar of 187. I felt bad for about 8 hours before my blood sugar dropped.
So now my good internist has sat down with me and looked at my table of blood sugars, and figured out how to help me. I was scared that I was just going to go through this with no way to help myself except to eat frequent small meals. The doctor questioned me and realized that I was not giving myself my Octreotide shots on schedule every day.
Sometimes I will get busy doing something at the computer and I don't give myself my injection until 2 or 3 hours after I should have given them. Twice I did not give myself an injection until 4 pm, so I never got a second shot until the next morning about 9 am.
Therefore, now I make sure to give my Octreotide injection between 11:00 and 11:30 am and pm. Since I have done that I have not had any unusual episodes. My blood sugar may start to drop and when I test it, it is at 75. So I have learned what the symptoms are for when my sugar is at 75, and I will eat then.
I still get a long-acting-repeatable injection of Octreotide at the cancer center every two weeks. I hope this information helps someone who is beginning to have these same
symptoms.
Update on 12/27/2013: My sugar levels continue to stay level most of the time. One weekend during Christmas shopping season I had a low blood sugar while I was out shopping. Then the next day I had another one at home in spite of being on regular injections every 12 hours. Luckily, I was alright both times because I had some hard candy with me in my purse, and I slowly walked back to where Richard was loading merchandise in our car. God was good and Richard was still there where I could find him.
I began to have my usual symptoms from low blood sugar about 12 noon: hunger, weakness, sweating. Janet offered me some crackers to eat, but I rapidly began to feel nausea and a hint of diarrhea coming on. Janet asked if I wanted to lie down in her spare room, but I thought I had better just get home in case the diarrhea began. You know how it is with carcinoid, and I didn't want to be at Janet's house for hours afraid to get in the car.
Basically, without eating anything my condition began to self-correct. I checked with myself every mile as I drove to see if I should pull off the road, but I never got any worse. It is an 8 mile drive, and I began to feel a little less shaky about 4 miles along the way. Another half mile and I was less sweaty. When I had driven 5 or 6 miles toward home, I was much better. I felt hungry and like my blood sugar was about 75, but not like it was 55, and I was shaking.
After hearing this story, my internist prescribed a glucose monitor for me in August, but I didn't use it much until the middle of September when my sugar did a really fast drop down to 54. It was about 3 minutes from just thinking I needed something to eat, to shaking and sweating again.
I had another sugar drop down to 59, and one Sunday day I had morning blood sugar of 187. I felt bad for about 8 hours before my blood sugar dropped.
So now my good internist has sat down with me and looked at my table of blood sugars, and figured out how to help me. I was scared that I was just going to go through this with no way to help myself except to eat frequent small meals. The doctor questioned me and realized that I was not giving myself my Octreotide shots on schedule every day.
Sometimes I will get busy doing something at the computer and I don't give myself my injection until 2 or 3 hours after I should have given them. Twice I did not give myself an injection until 4 pm, so I never got a second shot until the next morning about 9 am.
Therefore, now I make sure to give my Octreotide injection between 11:00 and 11:30 am and pm. Since I have done that I have not had any unusual episodes. My blood sugar may start to drop and when I test it, it is at 75. So I have learned what the symptoms are for when my sugar is at 75, and I will eat then.
I still get a long-acting-repeatable injection of Octreotide at the cancer center every two weeks. I hope this information helps someone who is beginning to have these same
symptoms.
Update on 12/27/2013: My sugar levels continue to stay level most of the time. One weekend during Christmas shopping season I had a low blood sugar while I was out shopping. Then the next day I had another one at home in spite of being on regular injections every 12 hours. Luckily, I was alright both times because I had some hard candy with me in my purse, and I slowly walked back to where Richard was loading merchandise in our car. God was good and Richard was still there where I could find him.
Tuesday, October 8, 2013
Help from Psalm 91
It's fall now, and I have returned to going to Bible Study Fellowship to study Matthew in the New Testament. We are reading about the early life of Christ, and one assignment was to read Psalm 91. We were to put ourselves in the place of Mary and Joseph when they had to flee from Bethlehem to Egypt and write how this Psalm may have comforted them.
I could see how having to flee to and from Egypt would put Mary and Joseph in the mind to benefit from "If you make the Most High your dwelling--even the Lord who is my refuge--then no harm will befall you, no disaster will come near your tent. for he will command His angels concerning you to guard you in all your ways; they will lift you up in their hands, so that you will not strike your foot against a stone."
As I read farther in the chapter, I found verses that helped me, "Because she loves me," says the Lord, "I will rescue her; I will protect her for she acknowledges My name. She will call upon me and I will answer her; I will be with her in trouble, I will deliver her and honor her. With long life I will satisfy her and show her My salvation."
I realized how many illnesses I have that God has rescued me from in-a-manner-of-speaking. He has given me a very mild case of Sjogren's Syndrome. Several years ago my internist commented that my symptoms are milder than most patients after 25 years. At one point, the medication Restasis was released to the market just as I was no longer being helped by over-the-counter moisturizing eye drops. I have a dry mouth, but there are OTC medicines for that. I have developed neuropathy in my feet slowly. There are patients who cannot feel their feet very well and have even fallen off step-stools because they did not feel the bottom of their feet. Plaquenil helps to relieve the stiffness in my fingers.
I have been healed by God from fibrimyalgia and the extreme dryness in my left eye that caused stabbing pains. I have required only one incision to remove carcinoid tumors; some patients have surgery every few years. I could be near death or crippled up due to arthritis, degenerative disk disease or carcinoid cancer. I don't feel very well today, and my blood sugar is shooting up and plunging down, but God has blessed me and I love Him. I love God and He has blessed me. It's a two-way street.
I could see how having to flee to and from Egypt would put Mary and Joseph in the mind to benefit from "If you make the Most High your dwelling--even the Lord who is my refuge--then no harm will befall you, no disaster will come near your tent. for he will command His angels concerning you to guard you in all your ways; they will lift you up in their hands, so that you will not strike your foot against a stone."
As I read farther in the chapter, I found verses that helped me, "Because she loves me," says the Lord, "I will rescue her; I will protect her for she acknowledges My name. She will call upon me and I will answer her; I will be with her in trouble, I will deliver her and honor her. With long life I will satisfy her and show her My salvation."
I realized how many illnesses I have that God has rescued me from in-a-manner-of-speaking. He has given me a very mild case of Sjogren's Syndrome. Several years ago my internist commented that my symptoms are milder than most patients after 25 years. At one point, the medication Restasis was released to the market just as I was no longer being helped by over-the-counter moisturizing eye drops. I have a dry mouth, but there are OTC medicines for that. I have developed neuropathy in my feet slowly. There are patients who cannot feel their feet very well and have even fallen off step-stools because they did not feel the bottom of their feet. Plaquenil helps to relieve the stiffness in my fingers.
I have been healed by God from fibrimyalgia and the extreme dryness in my left eye that caused stabbing pains. I have required only one incision to remove carcinoid tumors; some patients have surgery every few years. I could be near death or crippled up due to arthritis, degenerative disk disease or carcinoid cancer. I don't feel very well today, and my blood sugar is shooting up and plunging down, but God has blessed me and I love Him. I love God and He has blessed me. It's a two-way street.
Thursday, August 29, 2013
What Octreotide Does to Hair
My hair is like dryer lint.
You know, that fuzz that you take out of the lint trap after a load of laundry is finished. That is how I have thought of my hair for the last year. This week I have a revised comparison: my hair is like dust bunnies. I spotted one-a dust bunny- underneath the wooden bench at the foot of our bed. (We have a tile floor.) That gives a better visual--there is some hair in there, but it is surrounded with fuzz.
All because of Octreotide. Now you should know that my hair is naturally wavy and coarse. Without calming influences applied as soon as possible after washing, my hair might resemble a bush. However, after shooting up Octreotide since December 2008, it hangs there more limply than a bush would; more like dryer lint. The texture of a single hair is fuzzy.
I also have less hair than 6 years ago, but I doubt the loss is totally from Octreotide. Part of my hair loss is genetic. I think my Mom had a little receding hairline at the temples, but not much. It is her father who was bald. Is it true you inherit your hair loss from your maternal grandfather? I also lost 3x as much hair as usual in February and March last year due to stress, but it mostly grew back. My generally thin hair, I have decided, is due to Octreotide. (There is some data to back this up.)
Every several days when I wash my hair I have been working on this monologue. (Those of us with falling-out hair wash it less frequently.) How does one make dust bunnies on her head look like hair? I thought I had it figured out until two weeks ago when the curled hair on my head returned to dust bunnies in only 4 hours. That means members of the public got to witness strands that had looked like hair returning to dryer lint.
Therefore, this Sunday I mounted a full frontal assault. I used one product to spray on wet wavy hair to reduce frizziness. Dry hair was curled with a curling iron. This actually straightens my hair, but it is what makes my hair actually LOOK like hair. I have been informed that it smooths the hair's cuticle. Cream was applied to reduce frizziness and coax out some curl. To me this looks fine, but I know it won't last, so I enveloped my head in a cloud of noxious gas called hair spray. (Don't worry, Diana, I have washed it all out so that I can come see you tomorrow.)
I am glad to report that at the end of the day my hair still looked like someone had curled it in the morning. It was droopy, but it still looked like hair. Success!
Are ya'll finding that Octreotide has affected your hair?
Saturday, August 24, 2013
Moving slowly in August 2013
For two or three weeks, I have not gotten much done. I made the comparison of how I feel to having measuring cups full of energy. I need 5 cups full of energy to do the things I normally do, but I have been getting only 2 or 3 cups of energy per day; so I have to choose what to do.
On Monday I went to have lunch with fellow retired teachers that I began working with in 1999. Several of them retired 5 or 6 years ago. We had a wonderful time catching up on recent news. My husband and daughter went with me, and we took our scrapbook of pictures from France. It was a lovely time.
On Thursday I cooked dinner using some chicken and vegetables that were already in the refrigerator. I stir-fried the food and it was delicious. I was very tired with aching legs afterwards. Friday I walked our beagle. On many of these days I also washed 1-3 loads of laundry. It's a quiet life, and I don't get much accomplished. Grrr.
I would like to garden. Our house needs cleaning. I have been trimming our very large day lilies and an iris by cutting away 1/3 of each plant at a time. That takes about 20 minutes. I did some gardening Tuesday and ran out of energy quickly.
That's how things are going. I have decided to ask my oncologist to do an Octreoscan when I have a regular appointment with him September 4th. Today is August 24th, and I have been weak since July 7th, so I think we should check to see if any tumors have gotten larger. It has been at least a year since an Octreoscan was done.
Thank you for your concern. God bless you all.
Sharon
On Monday I went to have lunch with fellow retired teachers that I began working with in 1999. Several of them retired 5 or 6 years ago. We had a wonderful time catching up on recent news. My husband and daughter went with me, and we took our scrapbook of pictures from France. It was a lovely time.
On Thursday I cooked dinner using some chicken and vegetables that were already in the refrigerator. I stir-fried the food and it was delicious. I was very tired with aching legs afterwards. Friday I walked our beagle. On many of these days I also washed 1-3 loads of laundry. It's a quiet life, and I don't get much accomplished. Grrr.
I would like to garden. Our house needs cleaning. I have been trimming our very large day lilies and an iris by cutting away 1/3 of each plant at a time. That takes about 20 minutes. I did some gardening Tuesday and ran out of energy quickly.
That's how things are going. I have decided to ask my oncologist to do an Octreoscan when I have a regular appointment with him September 4th. Today is August 24th, and I have been weak since July 7th, so I think we should check to see if any tumors have gotten larger. It has been at least a year since an Octreoscan was done.
Thank you for your concern. God bless you all.
Sharon
Friday, July 12, 2013
Good Music! Come Thou Fount of Every Blessing
David Crowder Band does a version more like what my family might have sung in the past. It has more of a bluegrass feel. This video posted the lyrics.
Enjoy the music. Do you have a version of this old hymn that you would recommend ?
Thursday, July 11, 2013
I am not Ready to Make Trips to the Emergency Room, Yet
One thing that (sort of) amuses me is the way our symptoms are referred to as being "flushing and diarrhea". Flushing, like my face just turns pink or red. Why doesn't anyone show a flushed face with sweat running down from the front hairline to the ear? How come they don't show the back of the head with wet hair on the neck?
When I was suffering from diarrhea this week, I kept waking up at 4:00, 5:00, and 6:00 am bathed in sweat from my head to my waist. How I longed to take a shower, but I didn't want to wake up my husband. He takes care of buying the groceries, cooking meals and cleaning up when I am sick. He has been in pain from gout; so I wanted him to sleep. (I did bathe, but it was later in the day.) I seem to really overheat before dawn when cancer makes me sick.
Early on the third day of being sick, I got my body out of bed and pulled the pillowcase off the sweat-soaked pillow, as a reminder to wash the sheets. I managed to lift the shower chair out of the bathtub, and put it in place. I wasn't strong enough to take a complete shower, but I could sit down and get the water to run over my upper body and wash off the worst smells. So I succeeded in getting washed off before I started my day, but I was horribly weak.
So, why not go to the Emergency Room and get an IV of electrolytes when I am so weak? I know that was probably what I needed because of the fluid loss from diarrhea and perspiration.
OK, Update! 7-18-2013: I talked to my gastroenterologist about being dehydrated. He says I should be OK by just drinking water and Gatorade when I feel better. Unless I have very dark urine or no urine, my body should replenish its fluids in the next days after being ill.
So, what causes the weakness? Well, I am somewhat dehydrated, but it's the cancer making me feel weak. I have been having the D-word and feeling ill for nearly 2 weeks. My face is flushed. That's just carcinoid syndrome.
I am not ready to begin making visits to the ER, yet. I guess it's just an attitude. I am not ready to begin that pilgrimage that will go with me for the rest of my life. Other patients write of the strong pain that develops later in the progress of carcinoid cancer. They go in for shots of dilaudin or other painkillers to relieve chest and abdominal pain. Others have heart and lung problems, and, of course, our livers begin to fail. I don't want to go from France to an ER in 21 days. So for now, I am depending on Gatorade and fresh fruit to help adjust my electrolytes. I am getting stronger every day.
When I was suffering from diarrhea this week, I kept waking up at 4:00, 5:00, and 6:00 am bathed in sweat from my head to my waist. How I longed to take a shower, but I didn't want to wake up my husband. He takes care of buying the groceries, cooking meals and cleaning up when I am sick. He has been in pain from gout; so I wanted him to sleep. (I did bathe, but it was later in the day.) I seem to really overheat before dawn when cancer makes me sick.
Early on the third day of being sick, I got my body out of bed and pulled the pillowcase off the sweat-soaked pillow, as a reminder to wash the sheets. I managed to lift the shower chair out of the bathtub, and put it in place. I wasn't strong enough to take a complete shower, but I could sit down and get the water to run over my upper body and wash off the worst smells. So I succeeded in getting washed off before I started my day, but I was horribly weak.
So, why not go to the Emergency Room and get an IV of electrolytes when I am so weak? I know that was probably what I needed because of the fluid loss from diarrhea and perspiration.
OK, Update! 7-18-2013: I talked to my gastroenterologist about being dehydrated. He says I should be OK by just drinking water and Gatorade when I feel better. Unless I have very dark urine or no urine, my body should replenish its fluids in the next days after being ill.
So, what causes the weakness? Well, I am somewhat dehydrated, but it's the cancer making me feel weak. I have been having the D-word and feeling ill for nearly 2 weeks. My face is flushed. That's just carcinoid syndrome.
I am not ready to begin making visits to the ER, yet. I guess it's just an attitude. I am not ready to begin that pilgrimage that will go with me for the rest of my life. Other patients write of the strong pain that develops later in the progress of carcinoid cancer. They go in for shots of dilaudin or other painkillers to relieve chest and abdominal pain. Others have heart and lung problems, and, of course, our livers begin to fail. I don't want to go from France to an ER in 21 days. So for now, I am depending on Gatorade and fresh fruit to help adjust my electrolytes. I am getting stronger every day.
Wednesday, July 10, 2013
Tracking Variations in my Health
After posting just last week about our trip to France, I am going through a rough patch in my carcinoid symptoms. From the evening of July 6 through July 9, I had repeated diarrhea. Usually, I am only sick for a day or for the morning, and then I just collapse into bed. When I get up after sleeping, the diarrhea is often gone. I take Welchol at the first sign of unusual bowel activity, and I keep up with my Octreotide shots.
I just want to track that this does happen. I was sick for 3 days and today I am noticeably weak. I took a loooong time to walk 30 feet toward my car from the doctor's office today. I had a regularly scheduled appointment with my oncologist today.
One change we made was to start a standing order to have my Chromogranin A and Gastrin checked every two weeks. Whenever I get sick suddenly, I can go in and use that standing order to see if I have high levels of either compound in my blood. I would really like just one time to catch my cancer markers in the act of making me suddenly sick.
The last time I went through a period of being sick over several days was in March this year. I wrote about it on March 16, 2013. One thing I want to do is to keep track of the regularity of when I get sick. Here we have a four month time again when I gradually got better, then got worse. I would like to figure out why the tough times come around.
I realize that I have not written much lately about drawing strength from scripture or from music. One verse I have known was in the Bible, but I didn't know the location of was found by me while on the Seine!
Psalm 118:17 I shall not die, but will live, and proclaim what the LORD has done. The LORD has chastened me severely, but He has not given me over to death.
I just want to track that this does happen. I was sick for 3 days and today I am noticeably weak. I took a loooong time to walk 30 feet toward my car from the doctor's office today. I had a regularly scheduled appointment with my oncologist today.
One change we made was to start a standing order to have my Chromogranin A and Gastrin checked every two weeks. Whenever I get sick suddenly, I can go in and use that standing order to see if I have high levels of either compound in my blood. I would really like just one time to catch my cancer markers in the act of making me suddenly sick.
The last time I went through a period of being sick over several days was in March this year. I wrote about it on March 16, 2013. One thing I want to do is to keep track of the regularity of when I get sick. Here we have a four month time again when I gradually got better, then got worse. I would like to figure out why the tough times come around.
I realize that I have not written much lately about drawing strength from scripture or from music. One verse I have known was in the Bible, but I didn't know the location of was found by me while on the Seine!
Psalm 118:17 I shall not die, but will live, and proclaim what the LORD has done. The LORD has chastened me severely, but He has not given me over to death.
Sunday, July 7, 2013
Doing Well in June 2013
Hi,
I hope things are well with you! In May and June I have been quite well, and even went on a trip I have been planning for a few years. All three of us were able to go via Air France to Paris and spend 12 days in France! We didn't spent much time in Paris, but saw Reims and Chantilly, and then headed to Normandy. About 8 days were spent in Normandy because it may be the home of my Lesueur ancestors. My ancestor, Joseph Lesueur or Lazzieur, was married in Maryland, in the American colonies in 1702. We are not sure specifically where his family was from as there were many Lesueur's in Normandy, Picardy, and Paris by the time Joseph came along. That story would make another blog.
However, I have wanted to go to France since I was 15 and saw pictures of Versailles. I spent time last year working out where I would want to go, and began praying about when to go. As I was looking up airline schedules and hotel locations, ads for group tours started to pop up on my computer's monitor. After studying several, I realized only one of them would go to the places I wanted to see and stay in one place the length of time I wanted to remain there. So we made the arrangements to go with a tour that would start from Paris and go overland to Chantilly, Reims, and Cabourg. Then we would board a riverboat that would go down the Seine and take us to Paris.
It worked out very well! If you have carcinoid, of course, you wonder, "What will I do on the days I get sick?" I got sick one day while we were at the Grand Hotel in Cabourg and on another day while we were travelling down the Seine. I was sick in the morning and went on the afternoon excursion at 2:00 pm. We never had to change any travel plans.I did miss going to see the famous tapestry at Bayeux, but I began to get better by 9:00 am, and had a lovely walk around Cabourg. I visited gardens, the shopping district, and a local creperie by 1:00 pm.
These photos show the Chateau Chantilly; Reims Cathedral; American Cemetery; Normandy Dancers; Eifel Tower; Notre Dame du Paris, and a garden in Cabourg in Normandy.
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I hope things are well with you! In May and June I have been quite well, and even went on a trip I have been planning for a few years. All three of us were able to go via Air France to Paris and spend 12 days in France! We didn't spent much time in Paris, but saw Reims and Chantilly, and then headed to Normandy. About 8 days were spent in Normandy because it may be the home of my Lesueur ancestors. My ancestor, Joseph Lesueur or Lazzieur, was married in Maryland, in the American colonies in 1702. We are not sure specifically where his family was from as there were many Lesueur's in Normandy, Picardy, and Paris by the time Joseph came along. That story would make another blog.
However, I have wanted to go to France since I was 15 and saw pictures of Versailles. I spent time last year working out where I would want to go, and began praying about when to go. As I was looking up airline schedules and hotel locations, ads for group tours started to pop up on my computer's monitor. After studying several, I realized only one of them would go to the places I wanted to see and stay in one place the length of time I wanted to remain there. So we made the arrangements to go with a tour that would start from Paris and go overland to Chantilly, Reims, and Cabourg. Then we would board a riverboat that would go down the Seine and take us to Paris.
It worked out very well! If you have carcinoid, of course, you wonder, "What will I do on the days I get sick?" I got sick one day while we were at the Grand Hotel in Cabourg and on another day while we were travelling down the Seine. I was sick in the morning and went on the afternoon excursion at 2:00 pm. We never had to change any travel plans.I did miss going to see the famous tapestry at Bayeux, but I began to get better by 9:00 am, and had a lovely walk around Cabourg. I visited gardens, the shopping district, and a local creperie by 1:00 pm.
These photos show the Chateau Chantilly; Reims Cathedral; American Cemetery; Normandy Dancers; Eifel Tower; Notre Dame du Paris, and a garden in Cabourg in Normandy.
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Monday, May 13, 2013
I have an Email Address for the Blog part 2
Hi!
The second part of the eddress is : urney@aol.com
Please don't send ads and unsavory things in the email, or I will remove it. I hope this is a way I can help someone.
God bless you,
Sharon
The second part of the eddress is : urney@aol.com
Please don't send ads and unsavory things in the email, or I will remove it. I hope this is a way I can help someone.
God bless you,
Sharon
I Have Created an Email for This Blog part 1
Hello,
In the last 6 months I have had more readers asking if I could answer a question for them or commiserate with them that I had before. Therefor, I have made us an email address to keep us in touch.
I will write the first half of the address in this post and will follow with the second half in the next post. The first half is; A5YRjo
The case of the letters does matter.
Sharon
In the last 6 months I have had more readers asking if I could answer a question for them or commiserate with them that I had before. Therefor, I have made us an email address to keep us in touch.
I will write the first half of the address in this post and will follow with the second half in the next post. The first half is; A5YRjo
The case of the letters does matter.
Sharon
Thursday, April 18, 2013
We Need an Update! Really Good news!
Well, looking back at last month's post I see I need to let you know I am fine. I had to adjust to being on a lower dose of medication, and then get back to "normal". So I'm sick in the morning a few days a week, but I do very well during the week after my long-acting shot while the Octreotide is at a high level in my blood.
The good news comes from my meeting with Dr. Imagawa, my surgeon, regarding my MRI. The scan, as usual, didn't show any sign of my tumor. It is not any larger than 3 mm, so it still cannot be seen. I asked the doctor if there is any way to know if I still have just one tumor or if they are like tiny grains of salt across my liver. He said there is no way to know when the tumors remain tiny.
The good news is that the tumor has grown so slowly for the last 4 years that Dr. Imagawa doesn't think it will be the cause of my death! He said I will still be sick, but I won't die from the oncology of carcinoid cancer. He said I will live long enough to die of something else.
This caused me to chuckle because I have spent five years wondering if I have five more years or 10 more years. Now I don't have to think about that, and I'm glad I already have been following the advice of my cardiologist since my recent female ancestors have had heart disease.
I asked him about a case like Dennis Woods who was pretty well the first six years he had carcinoid cancer, but during the next 7 years his liver filled with tumors. His liver is failing and he has brain damage from the ammonia produced by his liver. The doctor interrupted me and said that I won't do that. That was what I needed to hear!
If my tumor gets large enough to be seen, the good doctor will take it out.
Regarding the phrase saying I will not die of the oncology of carcinoid cancer: he means that I still have carcinoid syndrome. That means my tumors are busy pouring chemicals into my bloodstream: that's why I am sick. The serotonin overload affects the heart, and the leading cause of death of carcinoid patients is actually cardiac insufficiency. That is why I already have a cardiologist watching my heart valves with an echocardiogram
I feel like I am in good hands. Now I no longer feel like there is a giant pan lid over my head ready to clamp down on my life and confine me until I die. I feel more like a normal person.
Thank you, Father for your grace!
Love,
Sharon
The good news comes from my meeting with Dr. Imagawa, my surgeon, regarding my MRI. The scan, as usual, didn't show any sign of my tumor. It is not any larger than 3 mm, so it still cannot be seen. I asked the doctor if there is any way to know if I still have just one tumor or if they are like tiny grains of salt across my liver. He said there is no way to know when the tumors remain tiny.
The good news is that the tumor has grown so slowly for the last 4 years that Dr. Imagawa doesn't think it will be the cause of my death! He said I will still be sick, but I won't die from the oncology of carcinoid cancer. He said I will live long enough to die of something else.
This caused me to chuckle because I have spent five years wondering if I have five more years or 10 more years. Now I don't have to think about that, and I'm glad I already have been following the advice of my cardiologist since my recent female ancestors have had heart disease.
I asked him about a case like Dennis Woods who was pretty well the first six years he had carcinoid cancer, but during the next 7 years his liver filled with tumors. His liver is failing and he has brain damage from the ammonia produced by his liver. The doctor interrupted me and said that I won't do that. That was what I needed to hear!
If my tumor gets large enough to be seen, the good doctor will take it out.
Regarding the phrase saying I will not die of the oncology of carcinoid cancer: he means that I still have carcinoid syndrome. That means my tumors are busy pouring chemicals into my bloodstream: that's why I am sick. The serotonin overload affects the heart, and the leading cause of death of carcinoid patients is actually cardiac insufficiency. That is why I already have a cardiologist watching my heart valves with an echocardiogram
I feel like I am in good hands. Now I no longer feel like there is a giant pan lid over my head ready to clamp down on my life and confine me until I die. I feel more like a normal person.
Thank you, Father for your grace!
Love,
Sharon
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