PRRT

Cancer times 3!

/ edebock / 30 Comments

One of the great things about our recent trip to Europe was the fact that for three and a half weeks I was just a Canadian tourist enjoying the sights. I had no medical appointments during that time and no one who saw me would have guessed that I’ve been fighting a little known, incurable cancer for almost six years.

Unfortunately, life isn’t always like that. Less than 24 hours after stepping back onto Canadian soil, I had a needle biopsy of my thyroid. I was visiting family in Vancouver when a call came from the doctor’s office. “He wants to see you,” I was told. I knew immediately that the news wasn’t going to be good. Dr W is a very busy man and he wouldn’t ask to see me without good reason, especially when he knows that I live two hours outside the city.

Since I’m having what will likely be my final PRRT treatment tomorrow morning followed by scans the next day to see if there has been any change to my neuroendocrine cancer (NETs) in the past six months and I’ll also be meeting with those doctors to discuss future treatment options, I convinced Dr W’s receptionist to have him call me. I wanted to know what else I was up against before that discussion took place.

The suspicious looking nodule in my thyroid is indeed another cancer, the third completely unrelated cancer in the past six years. Cancer number two which was located in my left parotid (salivary) gland was diagnosed seven months after the NETs cancer. It was removed surgically followed by six weeks of radiation.

At this point, I don’t even know what this new cancer is called, but Dr W hastened to assure me that it isn’t aggressive and that it is, in fact, quite common in people over the age of 65. Many live their entire lifetime without even knowing they have it. Apparently common practice is simply to monitor it, but since we already know that mine is growing, it may require more than that. I’ll be seeing Dr W next month to discuss options.

My first cancer diagnosis came as as a complete shock and the second one almost as much so. At that point, I didn’t know that second cancers have been reported to occur in 10 to 20% of patients with neuroendocrine cancer. I have no idea what the incidence of third cancers is, but I’m guessing that I’m not the first one to travel this road.

I do know that I’m not stressing out over it. I’m resting in the “peace that passes understanding” (Philippians 4:7). The Lord promised to take care of me at the beginning of this journey and I’m pretty sure He’s still on the job!

At the same time, this might be a good time to remind myself once again what cancer cannot do.

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Milestones

/ edebock / 10 Comments

I’m not sure how it happened so quickly, but our youngest grandson will be 5 tomorrow!

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We spent this past weekend in Calgary for an early birthday celebration. On Friday, while Mommy and Daddy were working and big brother and sister were at school, we took him on a lunch date to his favourite restaurant, a McDonald’s with a great Playplace where he burned off a ton of energy after eating his meal.

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It was a weekend full of fun… sledding, skating, colouring, playing multiple board games and hide and seek, and in the early hours of the morning, a tiny boy crawling into bed with me! I’ve long referred to Simon as my velcro boy because whenever I’m around he attaches himself to me like glue. I thought that that might begin to change as he grew older, but so far it hasn’t and I’m definitely not in any hurry for it to!

Turning 5 is a milestone of sorts. Over the coming year, Simon will leave the preschool stage behind and take another step toward becoming a “big kid”. He’ll go to Kindergarten in the fall.

Simon’s birthday is also a milestone for me. In late August of 2013, when I was first told that I had cancer, Melaina was 10 or 11 weeks pregnant. Before we knew what kind of cancer I had, what sort of treatments I might be facing, or what the outcome might be, I prayed very specifically that I would live to see and hold that baby. It was pure joy to be in the delivery room on March 13, 2014 when he arrived and to have the honour of cutting the umbilical cord (his Daddy was there too, but he’s squeamish about such things and was more than happy to have me do it)! I am extremely grateful to still be here to see Simon turn 5 and to enjoy all the fun of being his Gram!

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Thankfully, recent CT scans have shown that my condition continues to be stable. I’ll be having another, and most likely my final, PRRT treatment in June. We have no idea what will come next, but there’s every reason to believe that I’ll be around to see Simon and my other grandchildren celebrate many more birthdays!

Looking in the mirror

/ edebock / 4 Comments

LogoWhat’s the first thing you notice when you look in a mirror? If you’re a woman, chances are it’s your hair. That’s certainly true for me. If our hair is a wreck, we feel like a wreck. Right?

Lately, I wasn’t happy with what I was seeing in the mirror. I love my curls, but there was just TOO MUCH hair. I had it trimmed awhile ago, but it grows so fast that it seemed like no time before I was back where I started. It was definitely time for something more drastic, so I decided to do something I’d never done before.

In the past, whenever I’ve tired of long hair, I’ve gone from cascading curls to a pixie cut, never anything in between. The only time I’ve had in-between hair has been when I was in the process of growing it out. This time I decided to opt for a short curly bob.

About three weeks after each of my PRRT treatments, I begin losing what looks like an alarming amount of hair. That goes on for the next few weeks, but unlike patients on chemo, I don’t lose it all. Thankfully, I had very thick hair in the first place, so even with the twice a year thinning, I have lots. I also have natural layers now as the regrowth is at all different lengths. All my hairdresser had to do this week was cut off the excess length and my hair fell into place as if this was the length it had always wanted to be! She was as happy with the results as I was.

Now when I look in the mirror, it’s still my hair I notice first, but I’m happier with what I see!

Looking in the mirror and liking what I see.

On chilly days my neck is missing all that hair though, so it looks like my scarves will be coming out to play more often in the next while!

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Radioactive again

/ edebock / 9 Comments

10991307_10153055708750915_6654881605691342497_nI had my 11th PRRT treatment on Monday and once again I’m too radioactive to be in close contact with other people. For a week following each treatment I spend most of my time at home. I sleep in the guest room, have my own bathroom, and stay at least a few feet away from Richard at all times.

There’s nothing funny about cancer and high doses of radiation, but sometimes you just have to laugh. I pose a particularly high risk to pregnant women and children, but since there’s no chance of running into any of them at our weekly senior’s bowling league, I played yesterday but sat apart from the rest of the bowlers. There were some who knew exactly why, but others who were curious. One jovial fellow, noticing that I was sitting alone, commented, “I see you’re sitting back there with all your friends!” I hope he didn’t feel bad when he found out why I was keeping my distance. I thought his comment was funny! Then there are invariably questions about whether or not I glow in the dark! (I don’t) One friend laughed and said I must be a night light! I told him that that must be the reason that I’m not allowed to sleep with Richard! The glow would keep him awake.

In all seriousness though, I have scans the morning after each treatment to determine whether or not there has been any change to my tumours. In the past, I’ve been able to sit down with a doctor immediately afterward to discuss the results, but this time was different. Dr Sandy McEwan, head of the clinical trial that I’ve been part of since 2014 and the driving force behind bringing state of the art NET cancer treatment to Edmonton, has left the program. While I’m sad for myself and the rest of his patients, I’m happy for him that he has been able to relocate to Toronto where he will be closer to family. I knew a couple of years ago when he proudly told me that he’d become a grandpa that that day might come! His departure means that there isn’t time for the remaining doctor to meet with every patient both before their treatment and after their scans. That meant that this time I came home not knowing what they showed. While I was still able to laugh yesterday, the question was there in the back of my mind. Was this the time that the news would be bad?

Thankfully, I wasn’t kept wondering very long. I chatted with one of the program nurses this morning and once again I heard that word that I’ve come to love; stable! There has been no change! Praise the Lord!

On being radioactive

/ edebock / 8 Comments

10991307_10153055708750915_6654881605691342497_nThough we often laugh and joke about it, there’s nothing fun about being radioactive two weeks out of every year. I don’t glow in the dark and I don’t have any special powers. I simply feel tired and have to limit the time I spend in close contact with other people. It’s not that bad really, but when I sit alone and watch Sunday morning’s sermon online and when my husband is out at a social event while I’m at home alone, it’s easy to start feeling a bit sorry for myself.

People often compliment me on my positive attitude and I think they’re right that it has a lot to do with how well my cancer battle is going, but there are moments when it’s hard to remain positive, when I’m tempted to invite myself to a private pity party.

For those who are new to my blog, I have neuroendocrine tumours (NETS), a little-known cancer that is often quite advanced at diagnosis due to the fact that its most common symptoms are very similar to more common ailments such as Irritable Bowel Syndrome, Crohn’s disease, lactose intolerance, asthma, and even menopause. Though it’s incurable, it is slow-growing and often treatable. I have the good fortune to live 2.5 hours by car from a state of the art treatment centre, one of the very few in North America that offer the latest and best treatment available for this type of cancer.

At this point, I am treated with radioisotope therapy once every six months. This involves an overnight stay at the cancer clinic followed by a week of semi-isolation at home. During that week I have to have my own bedroom and my own bathroom and I have to limit my contact with other people because I’m highly radioactive. I pose an especially high risk to pregnant women and children under the age of 12.

I had my most recent treatment on Wednesday. Scans the following morning showed that my condition continues to be stable. My cancer has not grown or spread. That’s exceptionally good news and when I start to feel sorry for myself, I have to remind myself of that!

The first couple of days of radioactivity aren’t bad. I spend a lot of time in the armchair in the corner of our guest room (which becomes my room for the week) or curled up on the love seat in my den. I’ve read almost two books in the past few days and drank copious cups of tea. By today, however, I’m beginning to miss human contact and I’m itching to be set free!

I did go for a short walk this afternoon. It’s a gloomy, grey Sunday afternoon in our very small town and the temperature is -5ºC (23ºF). Two vehicles went by, one at a distance and the other close enough for the driver to wave. Other than that, I didn’t see a single soul. Definitely no danger of radiating anyone! I could hear traffic out on the highway, my own feet crunching on the snow, and the occasional winter bird in the trees. It didn’t do a great deal to lift my spirits, but I’m sure the fresh air and exercise were good for me.

When I start feeling a little mopey, perhaps it’s a good idea to once again remind myself of the things that cancer cannot do.

What Cancer Cannot Do

Cancer is so limited…

It cannot cripple LOVE

It cannot shatter HOPE

It cannot corrode FAITH

It cannot destroy PEACE

It cannot kill FRIENDSHIP

It cannot suppress MEMORIES

It cannot silence COURAGE

It cannot invade the SOUL

It cannot steal ETERNAL LIFE

It cannot conquer THE SPIRIT

Author Unknown

It may leave me radioactive for a little while and feeling a bit sorry for myself. It may even eventually destroy my body, but as the poem says, it cannot conquer MY SPIRIT! 

As the old saying goes, “This too shall pass!” Two more days and I’ll be free again!

Where’s that little black dot?

/ edebock / 24 Comments

Now that my cancer treatments are six months apart and I feel so well in between, sometimes it’s almost possible to forget that I have that dread disease. Almost, but not quite.

Yesterday morning, we were back at the Cross Cancer Institute in Edmonton for Lutetium treatment #7 and this morning, I had the follow-up scans and met with my doctors to learn the results.

Once again, the news was good. The black marks on the screen that represent my tumours were not only significantly smaller than they were at diagnosis three years ago; they appeared to be noticeably smaller than they were six months ago. Three were still very obvious and the doctor pointed out the fourth one, but where was number 5? Gone? Was that possible?

Dr. Koumna, the newest member of my care team, explained that what we know for sure is that that tumour, one of the smallest in the first place, is no longer absorbing Lutetium, the radioactive substance that binds to my tumours and fights them on the spot. It may be gone or it may be dead or completely non-functioning. Either way, the news is definitely good!

On the other hand, the morning was also somewhat sobering as we were reminded once again that neuroendocrine cancer (NETS) is a deadly disease. We learned that a couple of things have changed in the treatment protocol since we last sat down with the doctors six months ago. First of all, I will now be having a CT scan three months after every treatment instead of after every second one. In other words, twice a year instead of only once. According to Dr. MacEwan, head of the team, they’ve discovered that leaving these tumours unchecked for six months, as they had been doing, was putting patients at too great a risk. Secondly, although I was told last year that after I’d had four treatments at six month intervals, if everything was still going well, we would try nine months between treatments, that is no longer an option. Again, leaving these tumours untreated for that long was proving to be too risky.

This type of therapy, known as Peptide Receptor Radionuclide Therapy or PRRT, is still very new. It is extending the lives of NETS patients beyond what was possible in the past and as that happens, even the specialists are still learning. I truly thank the Lord that I live so close to one of the centres where this treatment is available because there are not many of them in North America!

The most disconcerting thing that we learned this morning is that, at this point, only 12 Lutetium treatments are available per patient. For me, that means just 5 more. Two and a half years and then what? Dr. MacEwan was frank in explaining that the clinical trial that I’m part of and that is the only way to access this treatment in western Canada at this time, was set up with a maximum of 12 treatments because they didn’t actually expect to need more than that. Though they knew that in the early stages of use, Lutetium was proving to be successful in providing symptom relief, stopping or slowing tumour progression and improving overall survival, they really did not expect it to be as effective as it’s proving to be. Now that some patients are approaching the 12 treatment maximum and still doing well, Dr. MacEwan will be going back to the government to apply for further funding and permission to continue therapy beyond 12 treatments. He fully expects that to be in place before I need it.

In the meantime, I’m highly radioactive again meaning that I need to stay somewhat isolated from other people for the coming week and, as usual after a treatment, I’m feeling quite tired, but I’m home and very happy to report that one little black dot was missing from the screen today!

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This is not my scan because I got so involved in discussing what I was seeing (and not seeing) on the screen that I forgot to ask if I could take a photo of it, but this gives you an idea what the scan I get after each treatment looks like. This patient has tumours that are larger than mine and located in different areas of the body.

Photo credit