Quote for October

A Prayer for the Ephesians Eph. 3:14-21

For this reason I kneel before the Father, from whom His whole family in heaven derives its name. I pray that out of His glorious riches He may strengthen you with power through His Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge--that you may be filled to the measure of all the fullness of God.

Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen!

Monday, April 20, 2015

As of March 2015, the cancer is still gone!

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.

Wednesday, July 16, 2014

It's Still Gone!


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.

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.

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.


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?

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!

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.

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.