More Good News and Some News That Seems too Good to Be True

We were so happy to get the results from Merlynn's latest MRI and hear the good news that his tumors have not grown or spread during the past six months!  We feel so blessed!  Also, his latest CgA marker is lower than it's been in six months.  This is another great indication that his tumors are stable.

Merlynn received some really interesting information from his online support group this week.  Several studies were cited about a virus being developed in Sweden which kills neuroendocrine tumors.  One of the awesome things about the virus is it kills only the cancer tumors and nothing else!  (That type of virus is called an oncolytic virus, by the way.)  So far, the data comes from lab rats, but it's amazing!  More funding and experimentation are needed before it can be given to humans, but scientists are very optimistic about the results.  (Apple is supposedly donating a huge sum of money towards the research since this is the type of cancer that killed Steve Jobs.)

I have to admit, I'm a little skeptical because all of this sounds just too good to be true.  Wouldn't it be great though, if Mer and others like him could survive long enough for this treatment to be available to them?  I'm in awe of people who are smart enough to come up with these ideas, and I'm so grateful for all the hard work being done to try to find a cure for this illness!  (We also owe a debt of gratitude to those lab rats.)

Here's a great article that tells more about how the virus works:  http://www.telegraph.co.uk/health/healthnews/9508895/A-virus-that-kills-cancer-the-cure-thats-waiting-in-the-coldc.html

Bad News, Then Good News

Photos of the Nebraska Medical Center and Dr. Luciano Vargas Jr.

We traveled to Omaha in late July, hoping Merlynn would be a candidate for liver surgery at the Nebraska Medical Center.  We were hopeful Dr. Vargas could take out half of Mer's liver, let that part regenerate, then do the same for the other half of his liver.  We were so encouraged after learning of others who had had this procedure done successfully and are now cancer free.

The facilities at the medical center were first rate, and Dr. Vargas was really nice.  We were impressed with his abilities and liked him very much.  Sadly though, he informed us that Merlynn's tumors are too numerous and widespread, therefore, he cannot be a candidate for the type of surgery performed there.  We didn't realize only 6 people have been able to undergo this surgery since the cancer has to be contained to only one lobe of the liver.  Obviously, we were disappointed.  Dr. Vargas's advice, like those here in Salt Lake, was to just stay the course.  Keep taking the shots and keep checking his cancer markers and imaging results for changes.  He told Merlynn he will never feel any better than he does right now, that surgery would not make him any better and would probably make him feel worse.  He told him to enjoy this time while he feels good.  If the time comes when the tumors are pushing against a rib or a nerve and causing a lot of pain or are pushing on his stomach so he can't eat, then surgery will be an option.

We were amazed to receive two such opposite opinions from two highly respected carcinoid specialists.  (Merlynn is now thinking of seeing another specialist at Cedars-Sinai to break the tie.)
Here's a link to a video about a woman who was treated there and lived for 13 years.  Sadly she just passed away on September 8.

http://abclocal.go.com/kabc/story?section=news/health&id=8382207

For now, we'll just keep an eye on things.  Dr. Vargas's opinion is likely the safest.

We did receive great news last week when Merlynn had a follow-up MRI.  The radiologist said the tumors are stable and they have not grown or spread during the past six months.  For this we feel very blessed and grateful.  This doctor thinks, as the last radiologist did, that Merlynn's primary tumor might be in the tail of his pancreas.  They'll just keep an eye on this for now as well.

Thanks again to all of you for your love, support, and prayers.  Merlynn still feels terrific!

Another Opinion in Omaha

Merlynn has decided surgery is the best option for him.  He's just not the type of person who can sit around knowing 40% of his liver is full of tumors and do nothing about it.

Through his online support group, Merlynn was introduced to a procedure done at the University of Nebraska at Omaha which is similar to the one offered in New Orleans. It seems to have very successful results.

We've decided to go to Omaha next week to meet with the doctor who performs this surgery and get his opinion on what he can do for Merlynn.  Sadly, the only carcinoid specialist at the University of Nebraska, Dr. Jean Botha, recently returned to South Africa to practice medicine.  However, his assistant Dr. Vargas, is supposed to be excellent.

These two links are about 5 minutes long and tell the stories of Ruth Gerdes and Tammy Kleinman. Both of them had their surgeries done in Nebraska and have been completely cancer free for several years.  When Merlynn corresponded with each of them, they were very positive about their experiences with the procedure.  We're anxiously hoping for the same outcome.

http://www.youtube.com/watch?v=rK2E991Nd6Q

http://www.youtube.com/watch?v=SXxS88cRmPI&feature=relmfu

Zebras

The zebra is the symbol used for carcinoid cancer awareness.  We first learned about this when we read a book called Zebras and Stardust which was written by my new friend, Mary Girsch-Bock, about her sister's struggle with the disease.  Mer found the book online soon after his diagnosis, and it really helped us understand this type of cancer.

Dr. Woltering was the one who came up with the zebra idea, and there are all kinds of zebra things in his clinic.

The reason a zebra is associated with carcinoid cancer is because generally, when people hear hoof-beats they think the sound must be coming from wild horses.  However, sometimes instead it turns out to be a herd of zebras.

Many patients with carcinoid cancer are misdiagnosed for many years because the doctors they visit think the symptoms they're having must be due to something else.  I read that doctors are taught in medical school to look for horses (or common problems) first instead of looking for zebras (things that are rare or out of the ordinary).  This has led to a lot of suffering for many carcinoid patients.

We feel very blessed that Merlynn's cancer was discovered early by a wise primary care physician.  We were also happy when we heard from Dr. Boudreaux (the surgeon who will most likely perform Merlynn's surgery) that since 40% of his liver has tumors and he still remains symptom free, he probably will never get the debilitating side-effects so many others do.

I can already tell by the way Merlynn's been talking today that he's probably going to opt for the surgery.  He's been trying to comfort me and help me be at peace about it.  I'm not there yet!

Decisions, Decisions...

We returned yesterday from our visit with Dr. Woltering in New Orleans.  He's basically a nice guy and pretty funny.  I can tell he truly is brilliant and very dedicated to his work with carcinoid cancer.

There's a map on the wall in his clinic showing where all of his patients live. Some of them have come to see him from as far away as Asia and Australia. 

I appreciate very much all the time he spent with us.  However, some of his language was rather crude, he tried to make us feel stupid after some of the questions we asked, and he called Utah a big hole which REALLY bugged me!  (He may have a stereotypical view of OUR beautiful state, but holy cow!  He's working in LOUISIANA, a state that doesn't exactly come across with an outstanding image in my book.)  The medical facilities at Huntsman Cancer Institute and IMC seem far superior to the one we saw in New Orleans.  I'd say the hospital there is a small step up from the Plantation Rest Home. The grounds were a mess, and it just seemed really old and smelled kind of bad.  Hopefully, it's better than it appears, since we may be spending a lot of time there.  If only we had some good carcinoid specialists HERE!

Dr. Woltering's plans for Merlynn's medical care have put a big pit in my stomach.  I need to have faith that Heavenly Father will guide us and won't take Merlynn before his time, but it scares me that Dr. Woltering and surgeon, Dr. Boudreaux, in New Orleans feel strongly that Merlynn's primary (original) tumor must be removed. It's the one sending out most of the bad stuff. The problem is, no one's been able to find it. If it's in the tail of his pancreas, it might not be too horrible to remove, but most likely, it's in his bowel. They will have to open Mer up and go through all of his intestines inch by inch with their hands, feeling for tumor(s) with their fingers.  If tumors are found, they'll have to cut out those parts of his bowel. 

Also, Dr. Boudreaux said he thinks he can remove up to 70% of the tumors in Mer's liver surgically. That would be great if all goes well, but I have so much fear about them cutting him up! What if he bleeds too much or there's a blood clot? What if he gets an infection? What if his bowel doesn't heal and he suffers the effects for the rest of his life? What if he ends up in constant pain?  We were told we should "get on top of it" now while the tumors are stable because it might be too late later on.  It all seems so extreme!  It's so hard to have him go through these procedures when he feels so good right now! 

It's somewhat shocking to have gotten such a different opinion while we were in Louisiana than what we've received from the doctors here in Salt Lake. The Utah doctors just want him to keep taking the shots for as long as they work, which could be up to 10 years. The New Orleans docs feel they could give him 20 years by doing it their way, and he'll probably die of something else before the cancer takes him out.  It just seems so risky to me. Of course I'd love to have 20 years here in mortality with my Merlynn, but I don't want to lose my chance at 10 years either.  We'll see...We'll fast, pray and spend some time in the temple and then decide.

More Tests

In preparation for our May visit to carcinoid specialist Dr. Eugene Woltering in New Orleans, Merlynn has been having more tests run at this doctor's request.

Last week he had another MRI.  The radiologist who studied the results reported finding what he feels is the primary tumor in Merlynn's pancreas. 

Hearing about the possibility of a tumor in his pancreas really scared me and I cried for three days, but according to Dr. Nibley, this is "inconsequential" since he already has "more than 10 but probably less than 20 tumors in his liver."

Dr. Nibley has been great about working with us, but he feels it's unnecessary to do anything to help Merlynn other than offer the monthly shot.  I'm really looking forward to visiting with Dr. Woltering who has written about several other options that are available, including surgery or radio frequency ablation which can somehow burn and kill the tumors.  (Dr. Woltering also thinks it's unlikely the tumor in Mer's pancreas is the primary one.)

I'm glad Merlynn is studying all the options so when the time comes, we can make an informed decision as to how to proceed.

(I'm including the above picture to show the "harpoon" he gets stuck with every month.  OUCH!)

An Octreoscan and a Visit with the Doctor

We spent the past two days at Intermountain Medical Center while Mer had an octreoscan. He was injected with a radioactive substance (indium-111) mixed with octreotide (the drug used to slow the tumor growth and ease the symptoms; the brand name is Sandostatin.) As the mixture went through Merlynn's system, it "lit up" his organs as it traveled throughout his body. Pictures were taken for about a half hour starting at noon on Monday, then for a couple of hours on Tuesday, followed by a CT scan. Most of the concoction eventually left his system, but it stayed and "stuck to" the tumors, making them "glow". By looking at the images, doctors were able to see where the tumors are located.

 

The biggest reasons we decided to have this scan done were to try to find the "primary" or original tumor, which is suspected to be somewhere else in Mer's body, and because the specialist we want to meet with in New Orleans said he wouldn't even see Merlynn unless he could see the results of this scan.

 

Okay, the results: Although the primary tumor site was not found during the octreoscan, and the scan does show 8 large tumors in his liver, we were happy to learn that the tumors do not appear to be in any other major organs. (The radiologist wasn't able to see a difference in the size of the tumors when he compared the CT scan results with the first one.)

 

The above picture shows the results of the octreoscan. You can see the tumors glowing in Merlynn's liver. I can only count 6, but the radiologist could see 8. (Tumors smaller that 2 cm don't show up on the scan.) The reason Merlynn's kidneys are aglow in the image is because some residual radioactive material was still there. There are no tumors in his kidneys.

 

Seeing Mer's liver lit up like a Christmas tree and knowing there are eight big tumors totally freaks me out and makes me cry. (Merlynn continues to remain calm and always dwells on the positive side of things.) We feel very blessed that the results were not worse and no tumors were found in his pancreas, kidneys, bowel, lungs, or spleen. Dr. Nibley also told us Mer's liver is still functioning normally, and that's good!

 

The doctor doesn't feel we need to go to more drastic measures at the present time to try to reduce or remove the tumors, but we'd still like to see what other options are out there and consult with doctors who are specialists in this field. There are only 10 specialists in the United States and none are in Utah, so we'll plan some fun trips and go see them!

An Update From Merlynn

Merlynn sent the following info in an email, and I thought he explained what's going on much better than I can. He told me I could include this update on my blog.

"Once a month Laurie and I go to the Utah Cancer Specialists Clinic (UCS) at the Intermountain Medical Center. Depending on whether we have to wait to see the oncologist, we're normally there for less than an hour. I get a shot in my behind from a nurse, which takes about 10 minutes, and occasionally we get to see the oncologist for another 10 minutes. Most of the time we spend in the clinic we are just waiting for things to happen. 

The shots I am taking, 30 mg Sandostatin LAR, are quite expensive but are very effective in controlling the very undesirable symptoms of carcinoid cancer and are also supposed to slow the growth of the tumors. The needle is the size of a small harpoon but needs to be that big and long because the injection has to go into the muscle and consists of a time-release powdered drug which is dissolved in the liquid phase just prior to the nurse doing her thing. All this being said, we were still surprised at the amount that UCS billed for only my Dec 14, 2011 office visit. Please see the attached graphic. (If you click on it, you'll be able to see it better.) All we can say is: Thank Heavens for good health insurance!!!

 

I had some blood work done last week and had the first CT scan done since Sept. 28, 2011 when I was diagnosed. The scan indicated that the tumors in my liver are "stable", although some of them are quite large, 3" x 1 1/2" x 1", and that there appeared to be no cancer tumors outside of my liver. We are quite anxious to get the "no cancer tumors outside of my liver" confirmed by a more specialized scan called an "octreoscan" that is designed just for detecting carcinoid tumors. That scan is scheduled over a 3 day period next week.

 

The Chromogranin-A (CgA) cancer marker in my blood work was down to 66, which is by far the lowest it has been since I started the shots when it was 1,900+.

 

All in all I feel really great, we feel very blessed that things are going well, and the bills are being paid! Thank you for your faith and prayers in our behalf. "

 

(This is Laurie again.) I just thought I'd mention that the shots Mer's been getting have gotten easier to take. There have been fewer side effects and less pain at the injection site. As Merlynn has said, "All's well that goes in the end well!"