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.