Serotonin

Great news!

/ edebock / 12 Comments

Just a quick update concerning my health. As many of you know, I live with NETS, a little known and incurable cancer. I’ve been waiting all week for the phone to ring with the results of routine CT scans done early last week. I wasn’t anticipating bad news, but I do live with the reality that it could come at any time. Thankfully, today wasn’t that day!

Today, the news was good! Almost four and a half years after diagnosis, my disease continues to be stable with no sign of growth or spread.

Today I also learned that my last two 5H1AA tests have been normal! What does that mean, you ask. While the injection that a nurse comes to the house to give me once a month and the radioactive treatments that I receive twice a year aren’t expected to lead to a complete cure, the hope was that they would render my tumours inactive or dormant. Neuroendocrine tumours (NETS) produce and release excess amounts of hormones, particularly serotonin. 5HIAA is a 24 hour urine test that measures the amount of 5-hydroxyindoleacetic acid, a product of serotonin, found in the body. The normal test results show that my tumours are no longer active; no longer producing serotonin. It’s the serotonin that can cause symptoms including abdominal pain and cramping, diarrhea, joint pain, wheezing, fatigue and flushing of the skin. Because my levels have now been normal for several months, I was told today that I probably won’t have to repeat the 5H1AA test again unless I begin to experience symptoms again! That’s great news as it involves 3 days of dietary restrictions prior to the test and then 24 hours of collecting urine which can be quite a nuisance.

I’ll have my next treatment on May 23. Until then, with the exception of my monthly injections, I can forget about having cancer and get on with the business of living!

zebra

If you’re curious about why the zebra is the symbol of neuroendocrine cancer, check here or here.

When no news is good news

/ edebock / 14 Comments

It’s been quite awhile since I wrote anything about my health as there really hasn’t been anything new to report. That in itself is good news!

As many of you are aware, I was diagnosed with two completely separate and unrelated cancers in late 2013 and early 2014. Yesterday, I finally received the results of CT and PET scans and other tests done three weeks ago. The first good news was that there has been no significant change in my incurable neuroendocrine cancer (NETS) over the last year. I have only had two radioisotope (Lutetium) treatments during that time, one last October and one in April, but that has been enough to keep things stable. The tumours have not grown or spread.

Screen Shot 2016-08-09 at 4.34.33 PMSource

Neuroendocrine tumours (NETS) produce serotonin which is sometimes referred to as a happiness hormone because a deficit can to lead to depression. An excess, however, can result in carcinoid syndrome which, as in my case, results in symptoms that include abdominal cramping and diarrhea, skin flushing, and periods of rapid heart rate. It can also lead to heart disease and other complications. A 24 hour urine test is used to measure the amount of serotonin in the body. Though I don’t know what units are used to measure serotonin, at the time of diagnosis, the level in my body was 150. Now, it’s down to 40. Though still above average, it is considered borderline and indicates that my tumours, if not completely dormant, are barely functioning. Monthly injections of Sandostatin, meant to suppress this serotonin production, are obviously working and I have had none of the above listed symptoms for the past couple of years.

More good news was the fact that there is absolutely no sign of recurrence of my second cancer which was an acinic cell tumour in one of my saliva glands. It was removed surgically followed by six weeks of radiation treatments, thirty in all. I have now been free of that cancer for over two years!

The best news, however, is the fact that I feel 100% healthy! My energy level is normal and except for the monthly injections, which are given by a nurse who comes to the house, and a treatment requiring an overnight stay in hospital in Edmonton once every six months, I’m able to lead a completely normal life. We haven’t gone on any long hikes yet this summer, but I’m quite certain that I could.

If things continue to go this well over the next year, treatments will then be reduced to one every nine months. I have no idea what the long term outlook is, but then, who really does know what their future holds? I know who holds my future and that is good enough for me!

“I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.”                                      Jeremiah 29:11

Hope and a future!

/ edebock / 6 Comments

It’s been awhile since I wrote an update about my battle with cancer which is, in itself, an indication that things have been going well. There really hasn’t been much to report which is a good thing! Yesterday, we sat down with one of my specialists to discuss the results of recent CT and PET scans. Though we weren’t expecting anything dire, I think we both walked out of his office feeling like a load had been lifted off our shoulders. Yes, the news was that good!

As many of you are aware, I have dealt with two completely separate and unrelated cancers over the past two years. The first good news was that there is absolutely no sign of the acinic cell cancer that was removed surgically and treated with radiation last summer. I have routine follow-up appointments with both the surgeon and the radiation oncologist next week, but I’m certain that they’re going to tell me that everything is fine.

We already knew that my primary neuroendocrine tumour, which is located in my colon, has been shrinking as a result of the radioisotope (Lutetium) treatments that I’ve been having. Yesterday we learned that the other four tumours, three on my liver and one in a lymph node, have not changed in size since diagnosis. That’s a glass half full / half empty kind of statement. While it would be nice to hear that they too are shrinking, the fact that they have not grown and that there are no new ones is actually very good news.

Another indication that the disease is stable, that my tumours are essentially dormant now, is hormone production. Neuroendocrine tumours (NETS) produce serotonin, a hormone that we all have in our bodies. Serotonin is sometimes referred to as one of the happiness hormones because a deficit may to lead to depression, but an excess secreted by neuroendocrine tumours results in carcinoid syndrome which, as in my case, results in symptoms that include abdominal cramping and diarrhea, skin flushing, and periods of rapid heart rate. It can also lead to heart disease and other complications. A 24 hour urine test is used to measure the amount of serotonin in the body. I don’t yet understand exactly what the numbers mean, but I was told yesterday that my level at diagnosis was 150. A year ago, it was down to 69 and now, it’s 42. Apparently, normal is around 40. That would indicate that my tumours are no longer actively producing serotonin which is definitely good news!

So what does all this mean for the future? There is no cure for NETS. Even if my tumours were to disappear completely which happens very rarely, I would not be considered cured, but I am now entering a maintenance phase. For the next two years, I will receive a Lutetium treatment every six months instead of every 9 to 12 weeks as has happened so far. Then, if things continue to go well, we’ll go to a treatment every nine months. Yesterday was the first time we were even told of that possibility!

“I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.”  Jeremiah 29:11

Yesterday was definitely a day that gave us hope and a day that gave me greater confidence of a future here on this side of heaven! The battle isn’t over, in fact it never will be, but for now it’s getting easier and that’s enough for me!