NET Cancer Awareness Day in Utah

We were thrilled to finally have NET Cancer Awareness Day recognized here in Utah.  Thanks to many of the members of our support group who helped make this happen.

Patty and Sharon were able to draft the declaration and submit it to the governor's office for him to sign.  Dan had some contacts in the BYU Athletic Office that he went through to arrange the interview with Coach Rose.  My friend, TV reporter Dan Rascon, was willing to do a story on NET Cancer Awareness Day that aired on KUTV Channel 2 News.  Its amazing how things can come together when so many people are jointly motivated in a great cause!

Hopefully, as more and more people become aware of this type of cancer, funding will increase, more treatments will become available, those who suffer with this disease will be diagnosed correctly in a timely manner, those who are told there is nothing that can be done for them will be able to learn more about what treatments are actually available to them, and life expectancy and quality of life will increase.

A huge thank you to BYU's basketball coach Dave Rose, Dan Rascon, KUTV News, and the members of our support group who did so much to get this story on the air.  We are really excited about it!  Here is the link to the story:

http://www.kutv.com/features/features/inside-the-story/stories/Inside-the-Story-BYU-coach-cancer-battle-56691.shtml#.VGOZXj90yUn

We feel so blessed that Merlynn continues to feel well.  We were worried for a while that perhaps we had been misguided in doing the radioembolization, but after several months of seeing no change, Mer's latest MRI did show that some of his tumors have shrunk and no new tumors were identified.  Life is good!

 

Y-90 Time: My Husband is Hot!

I haven't posted for a while because there hasn't been much to report.  For  nearly two years, Merlynn's liver tumors remained “stable”.  Slowly, over the past few months however, the marker numbers on his blood tests started to trend upwards, and when he received his latest MRI, we discovered as we'd expected that most of his tumors have started to grow again.  Some of them have grown significantly.

 

Merlynn decided it was time to act. 

 

During our Utah Carcinoid Cancer Support Group meeting last May, we heard from an interventional radiologist named Dr. James Carlisle.  He told us about a procedure called radioembolization which involves placing millions of microscopic radioactive resin beads, called SIR-Spheres which are bonded with Yttrium-90, into the liver through the hepatic artery.  If done correctly, the beads settle in next to and deep within the liver tumors.  The radiation kills or shrinks those tumors without harming the good parts of the liver.  The beads lose most of their radiation after about 3 days but remain permanently in place in the liver.    

 

Mer with Dr. James Carlisle at our support group meeting in May

 

After a few weeks of preparation, where Dr. Carlisle "mapped" Merlynn's liver so he knew where each of his arteries went, Mer had the procedure done on his right liver lobe yesterday.  This is an outpatient procedure; but as expected, he is pretty hammered today and will be for the next couple of weeks.  We feel everything went well though and will wait to see how the scans and marker labs look in a month.  If the procedure was successful, he will have the left lobe of his liver done in about two months. 

Merlynn right before the procedure

 

 

Because of Merlynn's occupation in environmental health, he was able to borrow a Geiger Counter from his former employer.  Here is a little video we filmed when we got home last night.  No wonder we were advised not to get within 3 feet of each other for the next 3-4 days!

 

 

 

 

If you are a carcinoid cancer patient or know someone who is, you may be interested in learning more about the radioembolization procedure. Here are some good articles:

For general information:

 http://www.sciencedaily.com/releases/2011/03/110328092409.htm

For more specific and detailed information:
http://www.sirweb.org/clinical/cpg/REBOC.pdf

 

Support Group Success!

I'm a little slow in blogging about this, but we were thrilled with the turn out for our first Utah Carcinoid Cancer Support Group Meeting on March 13.  Thirteen people attended, and considering the rarity of neuroendocrine tumors, we feel this is a great beginning.

Merlynn did a nice job of conducting the meeting and shared some good information.  He gave out binders with charts and other pages which could help the members keep track of their test results, etc.

We're grateful to have met so many new friends and feel blessed to rub shoulders with such remarkable people.  We quickly realized that so many others are struggling with this disease a lot more than we are, and they shared such amazing stories of courage and strength.  We left feeling very uplifted and with a great deal of love for each of them.

We're so thankful that the additional tests Merlynn had this month continue to show us his tumors are stable. 

We're looking forward to our next support group meeting in May and hope we can somehow bring strength, knowledge, and comfort to others.

Good Health, Good News, and Good Work!

We're so happy to report that Merlynn continues to feel terrific, and all of his recent tests and scans came back showing no significant growth or change in his tumors during the past year.  We feel so blessed!

The doctors previously thought the tumor on his pancreas must be the primary, but on last month's octreoscan it didn't "light up".  That means it probably isn't a carcinoid tumor.  Although this is good news, it means his primary tumor still hasn't been found.

Merlynn has devoted many, many hours to studying carcinoid cancer and neuroendocrine tumors.  I really believe he now knows more than most of the doctors in our area.  We feel we're ready to help others who have this awful disease, and we feel we can learn from them as well, so we're starting the first support group for carcinoid cancer in Utah.  We've met or spoken with several people who have helped us set it up, and our group is now listed on many cancer websites and other information sources.  Our first meeting will be at the Intemountain Medical Center on March 13.  It's been interesting to hear from several people from other states who have wanted to help, and so far, three people have signed up to join our group.  Here's the information as it's been published:

If you or a loved one has been diagnosed with carcinoid/NETs or have an interest in learning more, you are invited to join our Utah Carcinoid Cancer Support Group. We will meet beginning March 13 from 6 - 8 pm and continue to meet the second Wednesday of May, July, September and November at the Intermountain Medical Center Campus in Murray. Click here, http://www.carcinoid.org/support/support-groups/directory, for contact information. Please check the Utah listing to register for the new group.

We had fun designing a logo for our support group.  We wanted to use Delicate Arch in our logo since it's so closely associated with Utah.  We found this awesome artwork by artist, Rory Walker.  We wrote and asked permission to use it and he so graciously gave us the okay.  I thought his response was so sweet:

Dear Merlynn,

Thank you for writing and asking permission to use my image in your logo. As it so happens cancer is sadly something that's very much in the forefront of my mind of late. It would be my pleasure to allow you to use the painting, and I hope it can (in whatever sense) go some way to giving the members of your group a small amount of support and encouragement in difficult times. I have a love affair with Utah and could happily spend endless days exploring it. I've been to visit a couple of times, and maybe one day will get the opportunity for further exploration. If you have a website or group page link that I could write about on my website to help spread the word that would be great.

All the best,

Kind regards,

Rory Walker

 

The zebra is the symbol for carcinoid cancer, (see earlier posts) so that's why we've also incorporated it into the logo.  (I purchased the zebra from a clip art site.)

 

We know it will take some time to build, but we're excited about the potential of our new support group.  We'll see how our first meeting goes.

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