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….



4 years

I just passed my four year cancer diagnosis.  It kind of just went by without much thought until now.  It’s hard to believe its been four years.  I’m feeling pretty good.  I have more pain from my neck than anything.  It is probably time for another injection.  I have been having some rib-area pain that is pretty steady.  It isn’t super sharp but it’s not a dull pain either.  It’s hard to know if this is from the liver surgery or something else.  I was told that some people have pain forever after that type of surgery.  It does come and go and is definitely worse when I sit for long periods of time.

My first surgery was July 2nd, 2012.  Right-hemicolectomy via laporoscopic surgery.  My recovery went well and I was in the hospital for 4-5 days.  I can’t remember.  My second surgery was the following February and was a liver resection.  They removed about ten tumors (which left me with about ten small ones).  My remaining rumors have remained fairly stable since.

Next up:  scan on July 20th and i meet with my Oncologist the following week to get results.  He didn’t order any blood work but they’ll do the basics before i see him.

I will let you know how that goes!




More of the Same

I’ve seen my new oncologist twice now.  I like him but it’s definitely different.  I don’t feel “connected”.  Dr. W. and I had some good chats.  We had a history.  I have no history with this Dr.  I guess we will build some as we go–unless I decide to switch and go see my old onc at his new office.  It would be cheaper since he is in my employer’s network and my co-pay is less if I go to a provider there.

My last round of blood work had my CgA the same (normal) and my pancreastatin went down to 146 (still above normal but lower than last time).  Everything else looks great!  I’m having a CT Scan in July (20th) and then I see him the following week.  He did say he’d put me back to yearly scans if all looks good.  I’m not expecting anything different.

Changes… my sister has retired early and moved to California to help take care of her grandson who lives with his dad.  Dad works a ton and can’t do it on his own.  I’ve lived with my sister since I left my husband.  It wasn’t supposed to be for this long but….  this means I have to move.  I have until the end of October (for now) as her daughter wants to buy her townhouse but is in a lease until Nov. 1st.  It could all change between now and then.  The biggest problem for me is money.  I’ve been paying her rent but not nearly as much as if I lived on my own.  Rent is pretty pricey here.  What this really means is that I have to sell my horse, Abbie.  It really breaks my heart.  I just can’t afford her, rent and all that goes with it.  I’ve had a few people come and ride her but nothing has worked out yet.  The most important thing is that she goes to a fantastic home!  I don’t care about the sale price, I would give her to someone I knew would take the best care of her. At least I have some time to find just the right home.  She’s not young.  She’s 16.  It’s harder to re-home the holder horse who may only have a few years left of the rigors of competition or even daily work.  She’s really fit but has a few joint issues like most horses over 12 or so.

Abs-halt II

Above is Abbie and my trainer at the one and only Dressage show we went to.

On a sad note, we’ve lost two members of our support group in a month.  Another lady I knew through my blog passed yesterday.  It happened so fast.  She was a PNET.  She’s been doing pretty good, several treatments and recently had SirSpheres.  She started having some pain and then she was in the hospital with fluid build-up. Next thing I heard  she was being sent home on hospice.  She died two days later.  I felt connected to her through our mutual love of horses.  She recently had lost her mare Ophelia to old age.  I hope they are reunited and galloping through the fields!

Until next time…



No News is…well, boring!

Haven’t written lately because I don’t really have anything to say!  I do have a follow-up with my oncologist next week.  We did blood work 3 weeks ago to check that pancreastatin that had gone up to above normal (was 94 and went to 182; the normal range is 0-135). My CgA was again normal and pancreastatin went down to 146 so slightly above normal.  The rest of my blood work was fabulous, as usual!  LOL.

I did go to Hawaii a month ago with my sister and her husband.  It was nice but it would have been better if it had just been my sister and I.  My friend was supposed to go with us–it was a couples thing.  He ended up not going at the last minute and I got stuck with paying his share of the condo along with mine.  Long story.

I did get to check something off of my “live-it” list.  We went on a helicopter tour!

Napali Coast-helicopter.jpg


I am so glad I did it. Below is me, my sister and her husband!

Helicopter Tour-3

Hanalei Bay Seesters.jpg

My sister and I at Hanalei Bay.

I’ll check in after my apt. if there is anything to report!



CT Scan Results

I had my triple phase CT Scan on the 29th.  Met with my new Oncologist on the 2nd.  He was very nice.  Different from my old oncologist — must more boisterous.  I did really like him though. I was impressed that he seemed to have actually read my history.  Not word-for-word, I’m sure but he had the pertinent facts down!

My scan showed stabled disease.  It pretty much couldn’t get better (okay, may if those tumors disappeared)!  We decided that since my pancreastatin went up 90 points (this can be an early indication of progression or active disease) it is now above normal, I’ll have my blood work done again in 3 months and see him after the results come in.  It takes about 7-10 days for the pancreastatin to get back.  It goes to a specialty lab in California.  Odd is my CgA went down another 2 points to a “2”, which is NORMAL!  Of course, all of my blood work has pretty much been normal since I had my liver surgery (3 years the 21st) with the exception of my creatinine clearance, which has been below normal for a long time now.  No one seems concerned or can even really explain it to me.



Neuroendocrine Cancer doesn’t care if you ignore this post

Great post from Ronny Allan!

Ronny Allan - Living with Neuroendocrine Cancer

cropped-awareness-road-sign.jpg Neuroendocrine Cancer hates awareness

When I was diagnosed, I wasn’t feeling ill. In hindsight, I now know some of the signs were there, I just put up with them. Neuroendocrine Cancer had laid a trap for me and I fell right into it. You see, Neuroendocrine Cancer can be very quiet and unobtrusive. It’s also a very patient cancer and will sometimes take years before it’s finally discovered.

Not satisfied with loitering in your small intestine, appendix, lungs, stomach, pancreas and a host of other places, it wants to reach out to your liver, your lymph nodes, your bones and your heart where it can cause the most damage. As it spreads, it can become noisier through growth but also by secreting excess amounts of hormones and other substances. It knows that tumour growth and these excess hormones and substances will mimic routine illnesses such as IBS, diarrhoea and stool changes including steatorrhoea, stomach…

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Pain in the Neck

I went in on Wednesday for my cervical epidural injection.  I did have light sedation, although if I do it again, I think I could forgo it.  It was one of the quickest procedures I’ve ever had!  I was still at the pain clinic for almost two hours.  I got taken back to the prep room right away but then I sat there for what felt like an hour.  It probably wasn’t that long but close.  I think they were waiting for the doctor to get there.  I really liked him.  He was fairly young.  Probably 35ish.  He said he has done about 25,000 of these!

It was painless and I went home and took a nice nap.  Then my sister and I went and saw Star Wars again.  We have a renovated theater by the house that has all reclining seats now so we wanted to check it out.  Very comfortable.

The steroids take 3-5 to really work so we shall see.  So far, it feels fine.  I do have some pain today.

On the cancer front, I got my Chromogranin A test results back.  This is one of the markers they track that coincides with tumor growth (in some).  Mine actually dropped a point to 2!  Normal range is 0-5.  It’s been in the normal range since after my liver surgery.  I’m still waiting on the pancreastatin test, which is a better indicator of possible progression.  I’m sure it will be within the normal range what with the CgA being normal as well.

My triple phase CT is scheduled for the 29th and I meet with my oncologist on Feb/ 2nd. I will update you after that!

New NET Cancer drug in the pipeline – Fosbretabulin Tromethamine CA4P (from Oxigene)

Ronny Allan - Living with Neuroendocrine Cancer

GoodNewsIt’s always nice to hear that another treatment for Neuroendocrine Cancer is in the pipeline and another great start to 2016.  I had not heard of the one that’s currently in the news, so rather than just retweet and share, I decided to do some detective work and then share with you a much greater understanding of what this drug is and what it has the potential to do.  My initial thoughts are that it looks promising but it’s still ‘early days’.

The new drug is formally known as Fosbretabulin Tromethamine or just Fosbretabulin.  It also goes by the name of Combretastatin or CA4P which translates to Combretastatin A4-phosphate.  In the most basic of terms it’s a type of vascular disrupting agent (VDA).  It appears to be something currently targeted at patients with advanced Pancreatic or Gastrointestinal Neuroendocrine Tumours with elevated biomarkers (CgA, 5HIAA, Pancreastatin etc).  The drug is currently…

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