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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