NETS

Another diagnosis, another pill

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No, it’s not another cancer this time!

Seven years ago, I was diagnosed as pre diabetic. I managed to control it with diet alone until recently when I gradually slipped into the diabetic range. Though I’d originally hoped that this would never happen, it comes as no real surprise. In some ways, I’m not a usual candidate for diabetes. I’ve never been overweight, I’m not a smoker, and I ate a healthy diet and exercised regularly long before the pre diabetes diagnosis. In addition to a family history of diabetes, however, the injection of Sandostatin that I receive every 28 days for my neuroendocrine cancer (NETS) can suppress the release of insulin and cause elevated blood glucose levels. With those two strikes against me, I’ve now reached the stage where I need medication and my doctor has prescribed Metformin, the most common treatment for type 2 diabetes. I’m also going to be meeting with a dietician to find out if there are ways that I can further tweak my diet.

If there’s one good thing about having NETS, it’s the fact that the regular surveillance that it requires brings other health issues to light before they become as serious as they might otherwise. Typical symptoms of type 2 diabetes include increased thirst, frequent urination, increased hunger, unintended weight loss, fatigue, blurred vision, slow-healing sores, and frequent infections. I have experienced none of these. If it wasn’t for the regular blood tests that I undergo because of my cancer, I likely wouldn’t have known that I was pre diabetic seven years ago and without the dietary changes that I made back then, I probably would have reached the diabetes threshold much sooner. Looking for silver linings helps me maintain a positive attitude!

I don’t share these health updates to garner sympathy. In spite of cancer, diabetes, and several other health concerns, I continue to enjoy excellent quality of life. Hopefully, with the help of medication, excellent health care practitioners, and healthy lifestyle choices, that will continue for a long time yet!

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One less cancer!

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It’s been several months since I wrote an update about my health which is usually a good thing because it means that there’s been nothing new to report. This week saw something very big happen though! Before I get into that, let me begin with a bit of history for those who are new to the blog.

In the early fall of 2013, I was diagnosed with neuroendocrine cancer (NETS) which is incurable, but often treatable. Exactly seven months later, a second completely unrelated cancer was found in a my left parotid (saliva) gland. Treatment on the first cancer was halted while that one was removed surgically and followed up with thirty radiation treatments. Once I’d had time to heal from that, treatment on the first cancer resumed. I entered a clinical trial that involved 12 radioisotope treatments (PRRT) over a period of approximately five years. Each of these treatments left me highly radioactive for a week, but I responded well and there was some shrinkage of my tumours. In the fall of 2018, toward the end of that regimen, scans detected something suspicious in my thyroid gland which eventually proved to be yet another unrelated cancer. Since only a small percentage of papillary thyroid cancers are aggressive in nature, the decision at that time was to watch and wait. My body had been through enough and we could afford to give it time to heal before deciding how to address this latest discovery.

Skipping ahead three years to last fall, my neuroendocrine cancer continued to be stable. In fact, 20 months after my last PRRT treatment, I was still experiencing some decrease in tumour size. I was feeling great and able to live a normal, active life. Though there had been no change to the thyroid cancer, we decided that the time had come to remove it rather than taking a chance on allowing it to begin growing or spreading.

Then began the long wait due to Covid hospitalizations delaying surgeries! Finally, on Thursday morning, the same amazing surgeon who did my previous neck surgery removed my thyroid. I woke up very early that morning with two distinctly different kinds of cancer and a few hours later I had only one again! It’s taking awhile for the reality of that to truly sink in.

After an overnight stay in the hospital, I’m home and feeling remarkably well considering. I’ve needed nothing more than Tylenol for pain which is such a blessing as heavy duty pain killers make me nauseous. My neck feels a bit like someone held me in a headlock for an extended period of time which is probably pretty similar to what happened during the 3.5 hours of surgery! I have a very husky voice as the result of some difficulties with the breathing tube, but that should gradually heal over the next couple of weeks. I had a super good sleep last night and now I’m just going to lean back and take it easy for a few days! During the first week of March, I’ll be back in the city for a follow up appointment with the surgeon as well as CT scans to check on the neuroendocrine cancer. In the meantime, I’m just rejoicing over having one less cancer!

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NET Cancer Day 2021

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Once again, today is Worldwide NET Cancer Day, a day set aside to increase awareness of neuroendocrine (NET) cancers and to promote improved diagnostics, treatments, information, care and research.

The theme of this year’s campaign is

Know the symptoms.

Push for diagnosis. 

Less than 30% of neuroendocrine cancer patients receive a correct diagnosis the first time they reach out for help. In fact, it often takes five to ten years from onset of symptoms to correct diagnosis. During that time, of course, the cancer quietly spreads. Thankfully, compared to many other cancers, NETS is slow growing, but like many of my fellow patients, I was Stage 4 at diagnosis. This means that my cancer had already spread from its origin to distant parts of my body. At this point, 8 years after diagnosis, treatment has halted it’s progress and resulted in some shrinkage, but there is no cure.

Know the symptoms. 

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Once considered rare, neuroendocrine cancer is actually the fastest growing class of cancers worldwide. Unfortunately, many health care professionals have never seen a case and know little or nothing about this complex disease. In order to achieve early, correct diagnosis for every patient, we need every primary care physician to know and recognize the symptoms. When they are presented with stomach pain, it makes sense for them to suspect gastritis (inflammation of the stomach lining), but we also need them to wonder if it could be neuroendocrine cancer. When the stomach pain is accompanied by severe diarrhea, irritable bowel syndrome is a definite possibility, but we also need the doctor to be aware that it could be NET cancer. When a woman complains of facial flushing, rather than simply assuming that it’s due to menopause, we need her doctor to ask himself if it could be NETS. Depending on the location of the primary tumour, other symptoms may include nausea and vomiting, rapid heartbeat, anxiety, skin rash, shortness of breath or wheezing, lack of appetite, unexplained weight loss and/or lack of energy.

Push for diagnosis. 

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Diagnosing neuroendocrine cancer is complex. In addition to recognizing the symptoms, we need doctors to order the correct laboratory tests and scans. It’s also important for patients to push for correct diagnosis. One of the most important things I’ve learned since my diagnosis is how important it is to advocate for yourself. Know your body. Know what’s normal for you. Pay attention when something feels off. Take note of unusual symptoms and talk to your doctor as soon as possible. If you don’t get the answers you’re looking for, PUSH! Don’t give up. Years before I was finally diagnosed, I remember thinking “at least it’s not cancer” but I was wrong! If I’d pushed for answers then, perhaps it would have been caught much sooner and the outcome might have been very different!

Know the symptoms.

Push for diagnosis. 

When is an accessory not just an accessory?

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LogoAccessories are the finishing touches that can take an outfit from drab to dramatic. They also add versatility to your wardrobe enabling you to create many different looks with the same basic outfit. Accessories are also an opportunity to express your personal style, taste, and preferences, but sometimes they are even more than that. Sometimes an accessory has special meaning or significance to the person who wears it. That’s definitely the case with my new hand-crafted zebra pendant!

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As many of you are already aware, the zebra is a symbol of neuroendocrine cancer (NETS), the cancer that I’ve been living with for the past eight years. In medical school, doctors are taught “when you hear hoofbeats, think horses, not zebras”. NETS was previously considered rare and therefore, a zebra. However, with increasing awareness and quicker diagnosis, neuroendocrine cancers are proving not to be as rare as once thought. Another reason that the Canadian Neuroendocrine Tumour Society (CNETS) chose and continues to use the zebra as their mascot is the fact that every zebra has its own pattern of stripes. Just as each patient and their needs are unique, no two zebras are exactly alike.

Committed to improving the quality of life and the survival rate for NETS cancer patients across Canada, every year CNETS funds research initiatives that will have a direct and meaningful impact on their lives. As a little-known cancer, it falls upon patients to raise much of the money for this ongoing work.

Screen Shot 2021-09-15 at 2.45.32 PMAl Gillis is a neuroendocrine cancer patient who came up with a unique idea for both increasing awareness and raising funds; a beautiful one-of-a-kind pewter pendant/keyfob featuring the CNETS zebra logo. Made entirely of donated materials and using only volunteer labour, the first distribution sold out in less one day! I was fortunate to nab one of those. Now, a second batch is in stock and going fast. If you’re interested in purchasing one and supporting this important endeavour click here, but don’t hesitate too long or you’ll be waiting for Al and his crew to make more!

You might also be interested in watching this video in which Al demonstrates and explains how the pendants (which can also be used as keyfobs) are made. I found it quite fascinating.

Do you have any accessories that are especially meaningful to you? Please tell us about one or more of them in the comments section below. 

 

Blogging woes and cancer news

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My beloved MacBook Air is getting old; old enough that I’m not able to update to a newer browser. Recently, whenever I opened WordPress to check my stats or work on a post, I received a message telling me that I was using an unsupported browser. Until earlier this week, however, I was able to click through to the appropriate page and work as usual. Then came the fateful day when all that I could open was a blank page with the WordPress logo in the centre!

As I usually do when something goes wrong in my blogging world, I fired off a cry for help to WordPress support and hoped for the best. They’ve never let me down yet, but while I wait to find out what they can or can’t do for me, I’m typing this on my husband’s computer. Not easy! Mine is a Mac, but his is not. The keyboard is a different size and my fingers don’t know what to do. Things jump around when I’m not expecting them to and then there’s the issue of all my photos being on my computer and not knowing how to transfer them to his. With practice, I’m sure these things will get easier, but this is, at best, a very temporary solution! I’m hoping that I don’t have to invest in a new computer right now as mine still does everything else I want it to do, but I have to be able to blog!   

Now, for the other news… 

In mid August, I went through a series of tests and scans, as I do every six months, to determine whether or not there were any changes to my cancers. When the results became available online, I was concerned about a spike in one marker that is particularly significant to neuroendocrine cancer (NETS). Not only had the level increased dramatically, but it was now slightly above the normal range. Knowing that I had to wait several weeks to see the doctor for an explanation, my response was similar to when WordPress quit working. I called for support. I sent out a cry for help to eight godly women asking each of them to pray, not only that my cancer had not grown or spread, but also that I wouldn’t be anxious as I waited for answers. Almost immediately, an unnatural peace descended on me and I was able to go on without undue stress or anxiety. 

“Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”  Philippians 4:6-7

And now for the really good news… my cancer continues to be stable and the doctor has no concerns! Though the spike in that one marker looked concerning to me, she assured me that it would have to be much higher before it was anything to worry about. Praise the Lord!

100 butt darts!

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Every 28 days, without fail, a visiting nurse pulls up in front of our house and comes in to give me an injection of Sandostatin LAR. Today was the 100th of those butt darts!

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Sandostatin LAR is a long-acting treatment meant to reduce or eliminate the symptoms associated with neuroendocrine cancer (NETS) and for me it has been an absolute life changer! No longer do I live with the stomach pains and diarrhea that plagued me off and on for several years prior to diagnosis. Though the effect of Sandostatin on tumour size, rate of growth, and development of metastases has not yet been determined, it is thought that it might also be of benefit in those areas.

Sandostatin comes as a powder and a diluent solution that must be mixed and administered according to very precise instructions which is why I haven’t been taught to inject it myself. Once the diluent is added to the powder, it must be allowed to stand for a minimum of 2 minutes and not more than 5 to ensure that the powder is fully saturated. Then, after gently shaking the syringe for about 30 seconds to ensure that the powder is completely suspended, the nurse has to administer it without delay to avoid sedimentation. Even following these guidelines carefully and using a fairly large needle (19 gauge), it sometimes plugs. On those occasions, she has to quickly change the needle and try again. On a couple of occasions it has taken 4 jabs to get the medication into me! My 100 butt darts has actually involved about 130 pokes altogether.

In addition to the benefits that the drug offers, getting it into me and not wasting it is of vital importance because every one of those butt darts costs $2358.52 CAD! In other words, over the past almost 8 years, we have pumped more than $235,000 into my posterior! You could buy a nice house in our small town for that much.

This is where I’m really glad to be Canadian. I pick up the Sandostatin at my local pharmacy every 4 weeks and don’t pay a cent! The cost is fully covered by the government and that includes the cost of having the nurse come to my home. A Mobile Administration Program even enables me to have my injection administered by a trained nurse anywhere else in Canada. A simple phone call is all it takes to make the arrangements. I have to take the medication, which has to be refrigerated, with me but I’ve found that an insulated lunch bag and a mini freezer pack do the job as long as I can put it in a fridge overnight. So far, I’ve had butt darts administered at all 3 of my children’s homes. Arranging to have it done outside the country would be more complicated and isn’t something I’ve tried at this point.

So, is getting my monthly Sandostatin a pain in the butt? Not really. As a child, I was terrified of needles, but I lost that fear a long time ago. Only once in awhile does really hurt going in. Today was one of those occasions, but it went in on the first try, so I’m not complaining! The injection site often feels bruised for a couple of days and a lump often forms that gradually dissipates over the next few weeks, but these minor inconveniences are well worth it when I consider the benefits. So, 100 butt darts down and here’s hoping that I can have 100 more! Or 200. Or more!

Good news!

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In these days of political turmoil, Covid variants, earthquakes, avalanches, and ice storms, we seldom seem to hear any good news, but today was different for us.

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It started with a phone call 45 minutes before we were planning to leave for the city to meet with the doctor to receive the results of the CT scans that I had last Friday. Scans that would tell us whether or not my neuroendocrine cancer (NETs) had grown or spread. Would I be okay with a phone consultation instead of meeting with the doctor in person? You bet I would! I’ve been feeling fine. I didn’t have any specific reason for needing to see the doctor in person and a phone call would save us four and a half hours of driving! 

The really great news came with that second phone call, the call from the doctor himself. Almost immediately, I heard the word I’d been hoping for. Stable! But then I heard, “for the most part.” For the most part? What did that mean? “It’s good news” he hastened to assure me.

There has been a change, but it’s a change for the better! Twenty months after my final PRRT treatment, after feeling like I was stepping off a cliff because I would no longer be on any treatment other than the monthly injection that I’ve been receiving since diagnosis in 2013, I’m still improving! A spot on my liver has decreased in size since the last scan almost seven months ago!

Another indication of how I’m doing showed up in the blood work that accompanied my scans. Chromogranin A, a protein released by neuroendocrine cells, is the most valuable marker of neuroendocrine tumours. In December 2019, six months after that final PRRT treatment, my Chromogranin A level was 112, which in the words of my doctor, was “at or slightly above normal, but not worrisome.” By last August, it was down to 49 and now it’s 27! This, too, is pretty remarkable. 

Neuroendocrine cancer is incurable. I’ll have scans and blood tests again six months from now and once again, we’ll wait for the results and hope to hear that wonderful word. Stable! In the meantime, we’re praising the Lord for today’s good news! 

NET Cancer Day 2020

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Once again, today is Worldwide NET Cancer Day, a day set aside to try to increase awareness of neuroendocrine (NET) cancers and to promote improved diagnostics, treatments, information, care and research. The focus of this year’s campaign is to highlight the challenges that patients and clinicians face around the early diagnosis of NETs.

A recent worldwide survey of NET patients showed that only 27% of them received a correct diagnosis the first time around. 44% of us, myself included, were misdiagnosed for several years before the correct source of our symptoms was discovered, often by accident. Globally, it has been taking 5 years on average from initial symptoms to diagnosis; 6 years here in North America which was also my experience.

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I’m part of the 36% who were initially diagnosed with gastritis, inflammation of the stomach lining. It was a GP who made that diagnosis based only on my symptom, a gnawing abdominal ache. I don’t fault him for that as NET cancer usually presents symptoms that mimic much more common ailments. Had we done a colonoscopy, however, the tiny tumour growing in my cecum would likely have been found before the cancer spread. It was several years later, when unusual spots on my liver showed up on a completely unrelated ultrasound, that suspicions were raised and I eventually learned that I had Stage 4 cancer! By that time, my symptoms had grown to include chronic diarrhea as well as occasional flushing and episodes of tachycardia (extremely rapid heart rate), all common characteristics of NET cancer.

There are 3 As that would significantly improve the outcome for many NET patients:

  1.  Awareness of symptoms  –  We need health care professionals at every level to be aware of this complex disease and to be able to recognize its symptoms. My family physician had been practicing medicine for approximately 20 years when I was diagnosed, but I was his first NET patient and he knew very little about it. I’ll never forget the locum who argued with me that neuroendocrine tumours aren’t malignant (some aren’t) and that I didn’t actually have cancer at all! 
  2.  Availability of diagnostic tools  –  The most precise tool for detecting NET cancer is the Gallium 68 PET scan, but I have never had one. In fact, only 18% of the surveyed patients worldwide have. It isn’t available at many cancer treatment centres. For the past few years, there’s been talk of one coming to the Cross Cancer Institute where I receive all my care, but as far as I know it hasn’t happened yet. 
  3.  Access to NET specialists  –  In the survey mentioned above, 24% of the patients had not even heard of a NET cancer specialist and many others travel long distances to see one. 

So, every year on November 10, and whenever I have the opportunity in between, I’ll do my bit to raise awareness, never giving up hope that eventually better diagnostics and treatments will be available to all NET patients and that ultimately a cure will be found!

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Overcoat overload

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LogoOur beautiful fall weather is rapidly disappearing and winter is on the horizon. It’s time to begin bringing out winter coats and boots. As I thought about doing that, I decided that this week would be a good time to purge my wardrobe of some of the jackets and coats that have been taking up closet space and not being worn. I decided to take a similar approach to my scarf edit of a few weeks ago.  

I started by rounding up all my coats and jackets from various closets around the house and hanging them in one place, the guest room closet. There were 25 of them. Yes, 25! Even with four distinct seasons, no woman needs 25 coats! 

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The next step was the easiest. Pulling out the coats and jackets that I wear regularly, I moved the fall and winter ones to the hall closet and those that I only use in the warmer seasons to the hanging rack in the basement storage room. I also pulled out the jean jackets that I wear from time to time throughout the year and moved them to a different closet.

Next came the much more difficult task of deciding what to do with the 13 items that remained. I’m not as disciplined as I’d like to be when it comes to getting rid of things which is why I ended up with 25 coats and jackets in the first place!

Two items were put aside to keep for sentimental reasons. The first, a vintage reversible wool cape, originally belonged to my mother. Forty-four years ago, on a blustery October day much like today, I wore it over my wedding dress. Thirty years later, my daughter wore it over hers on a stormy mid December day. Though I’ve only worn it a handful of times, it has become a family heirloom and I won’t be parting with it. Since capes are very much on trend this fall, I moved it to the front closet where I might remember to wear it this year.

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The second item that I’m keeping for strictly sentimental reasons is a patchwork jacket that I made for myself from recycled jeans a long time ago. I made a similar one for my very dear friend, Joan. When she lost her valiant battle with breast cancer in 2006, Joan’s husband returned it to me and the two jackets have been hanging side by side in our storage room ever since. Mine has been returned to that spot and they will stay there, a reminder of an enduring friendship that was cut short far too soon. 

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That left me with 11 coats and jackets to decide what to do with, but I hadn’t got rid of any yet! The next step was to try each one on, stand in front of the mirror, and ask myself, “Does this fit well?” “Is the colour right for me?” “Do I love it?” and probably most important, “How likely am I to ever wear this again?” At that point, the donate pile began to grow quickly!

Soon I was down to just three jackets hanging in the closet; three beautiful leather jackets that originally belonged to my very generous sister-in-law, Sue. She often shares with me when she cleans out her own closets. I’ve had the jackets for quite awhile and don’t expect to wear them again, but I hesitate to drop them off at the thrift store with the rest of my donate items because I know that that they’ll be sold for far less than they’re worth. I thought about trying to sell them on one of the buy and sell sites that I belong to on Facebook, but I don’t really want to profit from them, especially when I didn’t buy them in the first place. Then I had an idea. After consulting with Sue, who gave her enthusiastic approval, I’ve decided to sell the jackets and donate the proceeds to neuroendocrine cancer (NETS) research. The recent CNETS HOOFING IT Across Canada fundraiser that I took part in fell a little short of our $100 000 goal, so every bit that we patients can add will help! 

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HOOFED IT!

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Over a three day period while camping at Miquelon Lake Provincial Park this past week, Richard and I hiked a total of 23.9 km, pushing me to within just 2 km of my final HOOFING IT Across Canada goal. This evening, under dark cloudy skies that look like they were about to let go and pour rain, I crossed my self-imposed finish line! Since July 1st, I’ve HOOFED IT 179.5 kilometres (111.5 miles). That’s 2.5 km more than the distance from our front door to the Cross Cancer Institute in Edmonton where I receive all my neuroendocrine (NET) cancer care.

If you’ve been reading my blog or following me on Facebook this summer, you know that I’ve been taking part in the CNETS Canada campaign to raise funds for NET cancer research. The goal was for participants to rack up 5514 km, the distance from Newfoundland and Labrador to the Yukon, by walking, hiking, kayaking, swimming, cycling, roller-blading, or any other forward moving activity that they could think of. We did that in spades, criss-crossing Canada almost five times!

Fundraising has been a bigger and vastly more important challenge. This evening, we’re sitting at just over $73,000, but approximately $20,000 of that has come in over the past ten days! For that reason, the deadline for making donations has been extended to September 25. With an extra two and a half weeks, we’re hopeful that we can bring in the final $27,000 necessary to continue funding critically needed neuroendocrine cancer research.

The need for research and awareness was brought home to me again this afternoon when I spent some time chatting online with a NET patient in another Canadian province who was diagnosed in May of this year. She’s been seen by an oncologist and has had surgery, but she hasn’t been referred to a NET specialist. She hadn’t even heard of Sandostatin, the injection that I’ve been receiving every 28 days since diagnosis. It’s been the workhorse medication for neuroendocrine cancer patients for the past 30 years, but her oncologist may never have encountered a NET patient before and may have little or no idea how to treat it. Sadly, this is a common occurrence for NET cancer patients!

Today, with so much attention being directed toward COVID related research (and rightly so) a relatively unknown cancer like ours can easily get overlooked. With many people facing financial difficulties, it’s not easy to keep asking for donations, but let me do it one more time. If you haven’t already and you’re able to give even a small donation, please visit my fundraising page and help us reach our goal. Every dollar counts!