Good news and then…

I’ve held off on writing this post for a little while because of the “and then” in the title, but here’s the latest update on my health. I had my tenth Lutetium treatment on Wednesday afternoon, spent the night in seclusion at the Cross Cancer Institute, and underwent follow-up scans early yesterday morning. After lying perfectly still under a warmed blanket (I love those warmed blankets!) while machines whirred around me taking detailed pictures of my insides, I sat down with Dr. Kounma to review the images.

These moments always stir up a bit of scanxiety. Rather than diminishing over time, I think that this has actually increased a bit in recent months. Shortly after I was diagnosed, we read that the average life expectancy for a NET cancer patient was five years following diagnosis. Better than a lot of cancers, I know, but I’m just a few months short of that now. Thankfully, the numbers have changed since that time. Last fall, Dr. MacEwan, head of my treatment team, presented at a NET cancer conference in Europe. By then, the time from diagnosis to disease progression (in other words, the cancer begins to grow and spread again) for patients who are part of the same clinical trial as I am, was 55 months. I passed that milestone a month ago.  This, too, is an ever changing number as more and more of us are meeting with success on this treatment plan.

Once again, the news was good! The post treatment images are not detailed enough to give exact measurements, but it was clear even to me that my cancer is not growing or spreading. In fact, if there has been any change at all in my tumours over the past few months, it appears to be for the better. We left the clinic rejoicing and praising the Lord!

AND THEN…

We were back home and it was four o’clock in the afternoon when the phone rang. It was Dr. Kounma. Apparently, when the radiologist reviewed the morning’s images, he saw something that appeared to be a partial obstruction of my small bowel. This was new since the CT scan that I had in February. Though I have exhibited absolutely no symptoms, Dr. Kounma’s instructions to me were “Go to ER for further evaluation today!”

YIkes!

That must have been one of the quickest ER visits in history! I left immediately for our small rural hospital, about ten minutes away and was back home again in little more than an hour. When I explained the situation to the intake nurse, she immediately picked up the phone and called my family doctor. He came over from his office, which happens to be housed in the same complex, and immediately reviewed the radiologist’s report online. His first comment to me when he saw me was, “Well you certainly look healthy for someone with a bowel obstruction!” He quickly determined that we were likely dealing with a red herring; that this was probably simply a false alarm. He was also quick to assure me that if there really was a blockage, it had absolutely nothing to do with my cancer. That was very reassuring. In fact, I wish that Dr. Kounma had thought to mention that.

Dr. Hanton decided that rather than jumping the gun and sending me back to the city for a CT scan, we would be best to take a wait and see approach. He told me the symptoms to watch for: vomiting, belching, abdominal pain, abdominal distention, lack of appetite, lack of bowel action, inability to pass gas. All of these would be pretty hard to miss if they began to happen. If need be, come back anytime, night or day, he told me and he even gave me his personal cell phone number in case I needed to get in touch with him!

18 hours have passed since the scans were completed and I’m still pooping and passing gas. (I bet you really wanted to know that, didn’t you?) It’s possible that there might be a partial blockage, but both doctors also assured me that these things sometimes resolve themselves. In the meantime, I’m thankful that my cancer is still stable and that, other than the usual post treatment tiredness, I’m feeling fine. Praise the Lord!

Where’s that little black dot?

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

If you’re interested in reading more about PRRT and how it works, one of the best explanations that I’ve found written in language that a non medical person can understand is found here. Keep in mind that this is an American site and some of the information, particularly toward the end of the article, pertains specifically to PRRT use in the US.

When no news is good news

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.

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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

As good as my last scan

Fellow NET cancer patient and blogger, Ronny Allen, published a post awhile back entitled, “I’m only as good as my last scan.” That sentiment definitely resonated with me as I never know what to say when people ask me how I’m doing. For the past while, I’ve been feeling absolutely great, 100% even, but unless I’ve had a recent scan, I really have no idea how I’m doing on the inside. That’s why I was actually looking forward to this week’s treatment and it’s follow-up scans, the first look at my cancer in 6 months.

Today, let me walk you through what this two day process looks like. On Tuesday morning at 9:30 a.m. Richard and I sat down with Dr. Sandy McEwan, scientist and doctor extraordinaire and head of my cancer care team. I told him how great I’ve been feeling, he told me how great I look, and I signed consent for the treatment procedure. He also shared some of the recent findings of the clinical trial that I’m part of including the exciting news of one patient who has been surgically proven to be tumour free!

Next, we were off to the volunteer run Sunroom Cafe to kill time over a cup of tea while we waited for the next step which was having my IV inserted at 11:00. Shortly after that, we headed up to the third floor to check into my private room in the nuclear medicine corner of the inpatient ward. In preparation for the treatment itself, I was given an anti nausea pill and a saline drip was started. Then I sat back and relaxed until the arrival of the radioactive Lutetium-Octreotate, which had just been flown in from the Netherlands where it is produced. At that point, Richard had to leave and I continued to relax  while it flowed through my veins seeking out and attaching itself to my tumours. Because I’m part of a clinical trial, there is lots of monitoring to be done, so Michelle, who administers the treatment, was in and out of my room over the next hour or so constantly checking my vital signs. My blood pressure remained good and she was astonished by my slow, steady heart rate. Obviously, I wasn’t experiencing any stress. Why should I? After all, this was my sixth treatment and I’m an old hand at this now!

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Once the Lutetium was in and the lines were flushed, the IV was removed. If I lived in the city, I’d have been free to go home, but since I live a couple of hours away and had to be back for my scan by 8 o’clock the next morning, I stayed the night. Richard came back to visit bringing me a Subway sandwich as my one and only complaint about the Cross Cancer Institute is the food. It’s so bad that even the staff apologizes for it! Dr. McEwan dropped in to see how the treatment had gone and then I settled in for a quiet evening. I spent awhile visiting and exchanging stories with the patient in the room next to mine, a retired farmer from northern Saskatchewan. At the Cross, Lutetium is administered to three patients at a time.

I slept well and was up bright and early to head back downstairs for my scans. After spending the night at our son’s place, Richard met me there. For the full body scan, I had to lay perfectly still on my back with a pillow beneath my head and another under my knees. Covered by a warmed blanket, I was quite comfortable as my body slowly moved beneath the enormous camera just a few inches above me. Dr. McEwan had planned on having a second, 3D scan done as well, but that machine was down. The technicians were working on it and if he’d felt it was necessary, we’d have waited around until it was up and running again. He was certain, however, that the first scan showed all that we needed to know. My cancer is stable! The tumours haven’t grown and there aren’t any new ones. There’s also no sign of recurrence of my second, unrelated cancer. While it would have been nice to hear that the tumours were continuing to shrink or that, as in the case of the woman mentioned above, they had disappeared completely, that is most unusual and no change is also good news.

I hope Ronny doesn’t mind me borrowing his title, but he is right. I’m only as good as my last scan and right now, that’s very good!

Finally!

Yesterday I FINALLY had the cancer treatment that my doctors wanted to give me a year ago! Thankfully, mine is a slow-growing, chronic cancer or I doubt I’d be here to tell the tale.

When my neuroendocrine tumours (NETS) were diagnosed last September, the doctors at the Cross Cancer Institute in Edmonton would have preferred to start me on a radioisotope therapy, known as Lutetium-Octreotate, that they had been using very effectively since 2010. Unfortunately, shortly before that time, the government had cut off funding for that treatment citing a need for more evidence of its safety and effectiveness. That necessitated the setting up of a clinical trial, a very time-consuming process.

Unlike many NETS patients, my tumours were equally receptive to a second, similar treatment, so rather than waiting for Lutetium to become available again, I received injections of mIBG in November and January. It wasn’t long after that that my second cancer was diagnosed and treating it became a higher priority. My NETS was put on the back burner while I underwent surgery and radiation to rid me of the acinic cell carcinoma in my salivary gland. In fact, my neuroendocrine tumours weren’t looked at again until a CT scan was done in late July. Dealing with a second cancer was bad enough but not knowing what was going on with the first one was equally disconcerting.

While all of that was happening, the Lutetium-Octreotate clinical trial was finally approved and as of yesterday, I’m finally a participant. So, what does that mean? I don’t feel like a guinea pig because the treatment isn’t a brand new, untried one. Having heard the success stories from Dr. MacEwan, chair of the Oncology Department at the University of Alberta and head of the Nuclear Medicine Therapy/Neuroendocrine Tumour Clinic at the Cross Cancer Institute, a man who I trust completely, I have no doubt that it is both safe and effective. Simply put, participating in the clinical trial is the only way that I can access the treatment that Dr. MacEwan feels is the best one for me so it’s clearly a no brainer. I will remain in the study for up to seven years and will be followed up for another year after that. Data that’s gathered along the way will be retained for 25 years and will hopefully be used to improve patient care over the long term.

For me, there are several advantages to taking Lutetium instead of mIBG. From Dr. MacEwan’s point of view, the fact that it will probably be less harmful to my bone marrow was the deciding point, but I’m happiest about the difference in the precautions that I have to take after each treatment. They’ll still leave me radioactive but the effect of that radioactivity isn’t as far reaching. I didn’t have to stay shut away in the lead lined room after yesterday’s injection and Richard was allowed to visit me. Instead of being in virtual seclusion for two weeks afterward, now it will only be one week and the restrictions within that week are much less limiting. Following an mIBG treatment, I had to stay at least 10 feet away from Richard for all but 3 hours a day. For those 3 hours we were allowed to be just 3 feet apart! I still have to have my own bedroom and my own bathroom for the next week but we can be 3 feet apart at any time which definitely makes life easier. I’m also more free to mix with other people as long as I keep a bit of distance between us and I’m careful to stay away from pregnant women and children under the age of 12. Though there’s still the need for several blood tests between treatments, there will also be periods of several weeks when I’m not required to have any blood work done. I definitely see a winter holiday in our future!

I was told that I’d be very tired for the first week after each treatment but I really haven’t felt tired today at all. I suspect that that might have something to do with the exciting news that we received following this morning’s post treatment scans. They confirmed what July’s CT scan appeared to show. In the 7 months since my last mIBG treatment, my neuroendocrine tumours have remained absolutely stable. There are no new growths and the existing ones have not grown! In addition to that news, the scans also showed very clearly that the cancer in my face is completely gone. We were already quite sure of that but seeing it on the screen was absolutely wonderful!

Now I think I can FINALLY breathe a sigh of relief and begin to live a somewhat more normal life again. I still have cancer. In fact, without a miracle, I always will have, but I also have high hopes that the year ahead won’t be quite as crazy as the one we’ve just come through!