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2014 and Still Stable

I haven’t posted in awhile (such an original blog line) but there hasn’t been a huge reason to do so. No news is good news. Things are indeed stable for me on the carcinoid front. In January I had my routine MRIs and lab work. The imaging showed that my tumors are stable and that there is no new growth or spread. I always love to hear that news! It’s so odd though, even after doing it for so many years, living life in these 6-month cycles then waiting to hear what the imaging shows.

My labs were in a solid range. My 24-hour urine 5-HIAA result was 19.1, which though technically elevated is a great number for me. I stayed off my PPIs for a few weeks and got a ChromograninA reading of 5.8 which is within normal. The only marker that was really elevated was Serotonin at 1142. That’s quite high, even compared to my typical results. The plan is to increase my monthly Sandostatin LAR from 30mg back up to 40mg to see if that helps pull the reading back down. I was on the 40mg dosage prior to PRRT. The only real downside is that it means two painful injections instead of one each round. I know I can’t complain because many of you are on much higher dosages.

I continue to get messages from other patients and caregivers or family members through this site, and am always happy to talk or just listen. I appreciate being able to help in whatever small way I can.

Be well.

Comments

Lisa
Reply

Just beginning my journey.

Pete Malone
Reply

Hi Brian, thanks for sharing all of your journey with us. Id love to know if you can get PRRT more than once? I know it is expensive, but worth it if it works! I am a carcinoid patient and my docs are starting to talk more about PRRT. My thought was to try and delay it as long as i feel pretty good but we’ll see. How were your symptoms prior to PRRT? My tumor burden in my liver is only 20%…but it is in my mesentery and intestines.
Thanks for your help!

Brian
Reply

Hi Pete: It’s been a little over three years now since I had my first round of PRRT at Excel Diagnostics in Houston. At that time I had four doses spread over about 5-6 months. I was told then that the maximum number of doses would be six, so I’d be eligible to return for two more doses in the future if needed. What I don’t know is if the protocol or recommended number of doses has changed since then. My symptoms didn’t change significantly before or after PRRT, and are still managed fairly well with Sandostatin LAR. My problem then was that my disease was spreading and growing quite a bit prior to PRRT, and that therapy slowed all of that and even shrank some of the tumors. I wish you the best. -Brian

Cathie
Reply

Hi Brian. I am so happy to hear how well you are doing. It makes me want to sing. But, I promise not to sing to loud.
Stay healthy.
Cathie from Excel

Brian
Reply

Hi Cathie: So great to hear from you! You’re welcome to sing as loudly as you like – I still have earplugs left over from the MRIs. Please say hello to Susan and the rest of the gang at Excel. -Brian

Julie Pasell
Reply

Hi Brian,
Thank you so much for sharing your story. Can I ask what your ki 67 numbers were? My husband was diagnosed last December, had major debulking surgery in Januay 2014 and as of yesterday has progression in the tumors in the liver, so we are looking into PRRT. The bummer is his ki 67 numbers are pretty high, grade ii, ranging from 11.6 to 21.
Glad you are doing well!
Julie

Brian
Reply

Hi Julie: My Ki-67 from my liver biopsy was low (<1%). That test was done very early on after my initial diagnosis in 2005, and unfortunately I don't have a more recent value. I do know that for myself and many others the PRRT has been a great systemic treatment option. It seems the most important factor with the potential effectiveness of PRRT is that the tumors exhibit good octreotide uptake, on an octreoscan for instance.
You are welcome to contact me anytime. I wish your husband and you the best,
Brian

Adrienne
Reply

Hi, Brian! I have come across your blog while researching doctors. I have been in touch with Dr. Wolin’s office, and in the works to set up an appointment with him for my father-in-law who was recently diagnosed with Neuroendocrine Carcinoma. It seems, the little that I have read so far, that you have had a good experience with Dr. Wolin. Would you have any words or comments that I could pass onto my father-in-law about Dr. Wolin? Thank you so much. I am going to continue to read your story.

derrick
Reply

Hi Brian,
I am looking for support groups related to NET syndrome in the gilroy, Morgan hill area. I am in the process of diagnoses. please email me back if you can offer any information. I am feeling hopeful after reading your story.

Brian
Reply

Hello Derrick:
Unfortunately it’s almost impossible to find fellow NETs patients, let alone support groups, in our area. I will recommend a couple Bay Area groups, and also a very important meeting that’s coming up at Stanford. For meetings and information in our area try http://norcalcarcinet.org/ and https://groups.yahoo.com/neo/groups/NCNCF/info If you can you’ll also want to consider attending The 4th Annual Neuroendocrine Tumor Patient Educational Conference at Stanford on March 1. It’s free and you can register here: https://www.eventbrite.com/e/the-4th-annual-neuroendocrine-tumor-patient-caregiver-educational-conference-tickets-15302678724
I wish you the best!
Brian

Anonymous
Reply

Hi Brian
I’ve been on your website(Blog) here and I’m not sure how to contact you… My husband Paul (61 diagnosed/ same disease) and I are actually here on the 8th floor at Cedars right now, and I would LOVE to be able to talk with you about our situation. Dr. Wollin left Cedars a month after we came here for treatment….Dr. Amersi has been amazing…but think our next move may be to contact Houston…We have Soooooo many questions and following your progress has given us hope…. I’d love to be able to chat with you… I’m being Paul’s advocate …maybe a bit like your wife Kathy was, to get you pointed in right direction… Anyway I’m not even sure I “Clicked” the right comment area to even get this message to you Brian …but if I did please email me at …
PS My poor husband has obstructed 3 times so we may be able to share our information with you as well…..
Leslie

Allie
Reply

Dear Brian,
My mother has suffered from carcinoid in the liver and small intestine for twenty years now, with her first diagnosis and surgery in 1991. Since then she’s had four debulking surgeries on the liver and intestine with various degrees of success. She’s now seventy and her health is declining because her carcinoid is growing much faster than ever before – she hasn’t eaten since December, the date of her last surgery, and is instead reliant on TPN, which she has been on for years as a supplement to the “short gut” syndrome previous surgeries left her with. She now vomits three to four times daily and we’re told it’s because of accelerated tumor growth/obstruction. Given all this, something must be done and we’re hoping to start PRRT soon. We are looking into treatments in Houston at Excel, and abroad at the Bad Berka center in Germany. I’d love to chat with you about your experience at Excel as I have a few specific questions I won’t post here – if you have the time to email, I’d so appreciate it!
All best, Allie Rowbottom

shelley orr
Reply

Your story is encouraging. I have islet cell neuroendocrine cancer , first in the pancreas 6 years ago. After 4 and a half years it recurred in my liver and is spreading. Sandostatin lar 30mg im every 2 weeks after 6 months halted 99 percent of the tumour that are throughout my liver. Eventually i will be put and affinitor and sutent then prrt. If it stays contained maybe liver transplant.
My prayer are with you and your family. I say kick cancer in the ass and say goodbye. Shelley Orr- 54

Brian
Reply

Hi Shelley: Thanks for posting your story. You’re on even more sando than I am so I’m glad to hear it’s helping. My oncologist is considering starting me on affinitor soon. I wish you the best with future treatments, especially prrt, and hope they do the trick for you. Keep up the good fight! -Brian

phillip murphy
Reply

just diagnosed. I’m only 47 and scared out of my mind. Reading information seems to help. My first encounter with an oncologist only worried me more as she seemed to advocate a wait for symptoms to manifest plan. I discovered the neuroendocrine carcinoid during a cat scan for a kidney stone. my primary seems to be near my mezateric (spelling??) artery and has apparently spread to part of my liver and lymph node near my pancreas and aorta areas. I do not want to sit back and wait. I want to be pro-active and fight this. I don’t even know why I’m writing all of this, it just feels better to get it out.

Brian
Reply

Hello Phillip: Thanks for your post. I completely understand how writing helps – it’s cathartic. I was 42 when diagnosed so I can relate to your fears and concerns. The oncologist’s advice to “wait and worry” is no surprise. I received the same direction many times. My very best recommendation to you is to seek out a true NETs/Carcinoid specialist. Check the list out here as a starting point: http://www.carcinoid.org/patient/treatment/find-a-doctor ; and poke around more blogs like mine to find out who people are seeing. You do have to be proactive and take the fight to the disease. I wish you the best! ~Brian

Merrell
Reply

Hi Brian,
I have found comfort in your blog. You see my husband just had his first treatment in Houston 9 days ago. It was a very scary experience but we are hopeful. He still has a lot of fatigue and what he describes as kidney pain that comes in waves. Did you experience this? He does have a history of ascites of the abdomen and the pain started after a paracentesis a week after treatment. We don’t know if they are related or coincidental. Thanks

Brian
Reply

Hello Merrell:
Thanks for your message, and know that I’m wishing your husband all the best with PRRT. Fatigue is no surprise. I was really wiped out after therapy, and once had to be driven home after nearly passing out at a lunch meeting. I didn’t experience the pain you’re describing. My only recommendation there would be to thoroughly discuss it with the medical team (which I’m sure you’ve already done). Also know that I didn’t see any remarkable results after my first round of PRRT. It wasn’t until after all four rounds that my imaging showed shrinking tumors and some dead tumor tissue.
Take care,
Brian

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