It’s been so long!

It’s been so long since I’ve done an update.  That is mainly because there is nothing really to update anyone about!  Not my cancer, anyway.  This is a good thing, even a GREAT thing!  Still stable after all these years.  I’m going on 7 now (June 2019).

On the personal front, there is a new man in my life!  He is 15 months old and his name is Duncan.  Duncan_grass2

He’s a crazy Cairn Terrier with a lot of personality!  He was about 4 mo. old in this picture.

 

4 Years Since Diagnosis

Stacie Chevrier

September 1st, 2018 marked four years since I was diagnosed with a Pancreatic Neuroendocrine Tumor.

It was Labor Day weekend 2014 and I found myself in the hospital for the third time in two weeks. Originally sent home with discharge papers listing my diagnosis as, “superbug” (seriously) with instructions that I should drink plenty of fluids and rest. The next day, I felt just as terrible and returned to the emergency room. When they took my blood, my potassium was so low doctors were shocked I had not gone into cardiac arrest. I was admitted and told they would do a CT scan in the morning. I had no idea what a CT scan was or that it’s often used to find tumors. Seconds after returning to returning from the scan, a doctor rushed into my room. “You have a mass on your pancreas, but I don’t think it’s pancreatic…

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NET Cancer Blog – Top 6 posts of 2017

Ronnie really does a great job advocating / educating on Neuroendocrine Tumors/Cancer.

Ronny Allan - Living with Neuroendocrine Cancer

Top 6 posts

These are my top performing posts for 2017 – comprising one eighth of my entire hits for the year.  My blog hits for 2017 almost reached a quarter of a million, double that of 2016 which was double that of 2015.  A chunk of these figures can be attributed to most of these articles.  Please share to maintain the momentum.

Top 6 posts for 2017 (Click on each article title to read) Short Description Hits in 2017
The Human Anatomy of Neuroendocrine Cancer Making the point that Neuroendocrine Cancer is not confined to a particular part of the body 9,906
Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis All about syndromes 7,546
Neuroendocrine Neoplasms – Grade and Stage (incorporating WHO 2017 changes) The very latest information (particularly about grading) 7,027
Neuroendocrine Cancer – no treats, just tricks A very powerful awareness message.  It was only published 2 months…

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Still here…

This was in my fortune cookie yesterday:

It’s time for you to learn to dance in the rain rather than wait for sun.

I thought is was fitting.  I must try. Kind of like the whole “live in the moment” thing.

Let’s see what all I can catch you up on…  I had my neck fused in May.  It ended up being a level 3 fusion (5 disks).  I got lucky and didn’t/don’t have any bad side affects.  I do feel like I have something in my throat a lot but at least it’s not all the time.

I have an appointment next week with my oncologist.  I had a scan the end of June (due to my insurance year starting over again on July 1.  It read like I was still “stable” except the part about multiple high density possible lesions throughout the liver, question prior chemoembolization (which I’ve never had).  I called the clinic to ask about it but NO ONE EVER called me back.  I just decided to wait until I saw the doc.  I’ll ask him.  I also want to get the Gallium 68 Scan next time.  We have it here in Utah now.  So exciting.  They’ve also just done the first PRRT treatment at Huntsman Cancer Institute!  It’s through the expanded access clinical trial.  Unfortunately, they only got permission to treat two patients but the oncologist heading it up (my first oncologist) thinks they will open it up for more.  I hope so.

What else… Its been a year since I moved into my apartment.  I got a puppy (temporary insanity) but he’s super cute and he and Sookie are finally starting to play (I should say Sookie is finally starting to play with him). Sook was not too thrilled the first month or so.  I’d say she’s still not 100% on board with the whole thing.  He’s 4 1/2 months old now and is a Cairn Terrier/Westie mix.  Cairn’s and Westies used to be the same breed so I just tell people he’s a Cairn Terrier like Toto on the Wizard of Oz.  My very first dog ever was a Cairn Terrier so I think it was a bit of nostalgia that prompted the acquisition.  His name is Duncan.  I call him Tur-Duncan a lot.

 

I will try to give an update after my appointment next week!

 

It’s been so long!

I’ve been a bit remiss in updating my blogs (yes, I have two).

There has not been much to “update”.  My cracked rib seems much better although I think this cold, cold, winter weather we’re having is making it hurt!  I’ve had a lot of rib area pain the last few weeks (again).  It’s not the same as when it was cracked though.

I am having a colonoscopy tomorrow.  It’s been 3 years since my last one and I’m not expecting anything but good news, after-all, today is my birthday!  My gift to myself.  Nothing to eat after 9am.  No birthday cake, no drinks with friends.  Oh well…  this was just the best week for me to do it since I have to have someone with me and my sister is in town (plus a slow week at work).

 

My bone scan came back with osteopenia.  Thin bones.  No surprise there.  I recently read where several patients on Sandostatin have been dx’d with either osteopenia or full blown osteoarthritis.  Many wonder if it is the Sandostatin that contributes to it.  I think it could be but it is more likely just our age!  Dr. Woltering suggested 5,000 units of Vitamin D with 1,000 of Vitamin C followed by two tums.  I think I am going to try that–if only I can remember!  I’m supposed to take two calcium supps a day but I forget more than I remember.

If you want to read my story from the very beginning, my other blog is:mylifewithcarcinoidcancer.blogspot

 

I hope everyone had a lovely holiday!

Let’s hear one massive THUNDERCLAP on NET Cancer Day

Great post from Ronny! Add your voice to the Ipsen Thunderclap campaign!

Ronny Allan - Living with Neuroendocrine Cancer

thunderclap-banner-for-ronny-mmc_editedLiving with NETs – add your voice!  

It’s no secret that I and other patients (Helen and Katia) have been helping Ipsen and their website consultants (Kanga Health) with a new site designed to support and help all Neuroendocrine Tumour patients.  I’m delighted to inform you via this awareness campaign that it will launch on 10 November 2016. The site is very aptly named ‘Living with NETs’. You can have a direct involvement with this campaign too.  Make your voice heard via the Ipsen campaign THUNDERCLAP (click on thunderclap).

Thunderclap is a social media system designed to release a synchronised campaign message at a specific time on a specific day, therefore enhancing and amplifying the message as it reaches hundred of thousands or (hopefully) millions of people within minutes.  It only takes a minute and you can choose which social media platform to use (Facebook, Twitter, Tumbl).  You can also…

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Mable is still my friend…

Stable Mable.  That’s me!  Still stable after 3+ years.  I consider my stability from the time of my liver resection.

Interesting what showed up on my scan.  Subacute fracture of the 8th rib!  Ha… that is why I’ve had right-sided rib pain.  I know when it happened too.  Something “popped” one day while I bent over to move a bucket of water.  Bam!  Hurt like hell for about a week and it’s hurt ever since.  My Oncologist didn’t even tell me about it.  I saw it on the written report while in his office.  I said oh, wow!  Broken rib.  He said that it didn’t have anything to do with my cancer–totally blew it off.  He did ask me if I had fallen or anything.  I told him what happened.  I also have a globular lesion in my butt cheek!  Hahaha.  That one made me laugh.  I’m sure that’s from a Sando shot so I’m not worried about it.  The report say’s possible metastatic disease but I know others who get these on scans and they are from the shots.

They did do ALL my blood work so should get my CgA and Pancreastatin back in a couple of weeks. Everything else is completely normal.

The next day, I had an appointment with my GP for a prescription refill.  I told her about the rib fracture and she was quite concerned because I really didn’t do anything that should have broken my rib.  I guess it’s actually quite rare to break a rib from a non-traumatic injury.  She is worried about my bones.  Osteoporosis.  I am going in for a DEXA scan next week.  It’s super fast and like getting an x-ray from what I read. I’m small boned and don’t take calcium much so ???

 

 

Thoughts on Scans

I have my 6 month CT Scan this morning.  I wasn’t really anxious at all about it.  After all, it is what it is. Why get overly worried about the results when I have no control over them.  Don’t get me wrong, I totally understand Scanxiety and where that comes from.  Especially for more aggressive cancers.  That is anxiety and then some!  I HATE waiting for results.  I loved my old insurance’s online portal because they would post my results within a day or two.  They didn’t wait for the doctor to sign off on them or whatever they do now.

I had changed my apt. to have this scan at different location.  I was in the imaging center one Saturday to pick up my cervical MRI and I asked her how their scheduled looked for today. I was scheduled at the hospital where I’ve gotten the last two or three.  This other place is just an imaging center.  It’s small, quiet and everyone is super friendly.  I need to try and get in earlier so I could get to work.  We had a lot going on today.  I did get in earlier and got to work with plenty of time to get ready for my meetings. Whew.

What I was really thinking about-scan wise, is how we try to gleam something from the tech when we’re done.  Are they acting weird? Super friendly?  Different at all?  Make eye contact or avoid it? Did they see something HORRIBLE?   I bet we all do this.

I’ve only had this happen once.  One time, at a different center, the tech came running out after me to see if I could come back because the radiologist saw something in my liver (they were doing a scan of my lungs, looking for pulmonary embolism).  Granted, I was 3 weeks post liver surgery.  I went back in, hopped up on the table and they shot some more pictures.  The tech then asked me if I wanted to see it.  I was like, hell yes!  I did have some large pockets of air and/or gas, or even infection.  It turned out to be nothing but it really did make me worry.

Thinking back, I’ve only had one tech that was not friendly at all.  I believe she was suffering from morning sickness that day.  I know she didn’t want to hook me up for the contrast and another tech came in and did that.  She had the prettiest red hair….