RonnyAllan.NET – Community Newsletter JULY 2018

RonnyAllan.NET – Community Newsletter JULY 2018

Newsletters
Summary for July Personal News  Another unusual month, after a bizarre June.  The chest infection has gone but still awaiting results of an x-ray to confirm.  July was supposed to be partly holiday but that was cancelled due to illness.  The chest infection caused a 4kg weight loss and only half of this has returned to date.  I also got the results of my first ever Ga68 PET Scan and this resulted in an article below. No longer a boring stable patient but nothing that needs doing imminently. Many thanks to all the messages which continue to arrive both public and privately, I'm most grateful.  I received my 100th Lanreotide earlier in the month and I'm still here following my 8 year 'cancerversary' on 26 July 2018.  Many of you…
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Neuroendocrine Cancer: Ga68 PET Scan – a game changer?

Neuroendocrine Cancer: Ga68 PET Scan – a game changer?

Living with Neuroendocrine Cancer, Survivorship, Treatment
This is not my personal scan When I was offered my very first Ga68 PET/CT at a 6 monthly surveillance meeting in May 2018, I was both excited and apprehensive. Let me explain below why I had a mix of emotions. You can read about my Ga68 PET experience here. I was diagnosed in 2010 with metastatic NETs clearly showing on CT scan, the staging was confirmed via an Octreotide Scan which in addition pointed out two further deposits above the diaphragm (one of which has since been dealt with). In addition to routine surveillance via CT scan, I had two further Octreotide Scans in 2011 and 2013 following 3 surgeries, these confirmed the surveillance CT findings of the remnant disease. The third scan in 2013 highlighted an additional lesion…
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Neuroendocrine Cancer: Fibrosis – an unsolved mystery?

Neuroendocrine Cancer: Fibrosis – an unsolved mystery?

Living with Neuroendocrine Cancer, Treatment
What happened to me?Since I was diagnosed in 2010, I've always known I've had a fibrosis issue in the retroperitoneal area, as it was actually identified on my very first CT Scan, which triggered my diagnosis.  Here's how the radiologist described it - "There is a rind of abnormal tissue surrounding the aorta extending distally from below the renal vessels. This measures up to 15mm in thickness".  He went on to describe that "almost certainly malignant".  The second and third scans would go on to describe as "retroperitoneal fibrosis" and "a plaque-like substance".  Interestingly the fibrosis itself does not appear to 'light up' on nuclear scans indicating it was not cancerous (see below).I really didn't know what to make of this issue at diagnosis, although I did know the aorta…
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“What are you doing this afternoon”

“What are you doing this afternoon”

Awareness
"Don't ignore symptoms because you're too busy at work".   I had what was really an incidental diagnosis in 2010 that took around 2 months to be diagnosed from me saying "I think I've lost some weight".  This is actually crazy because I had metastatic (Stage IV) cancer and how can cancer get to that stage without any hints?  Well, often that's what happens with Neuroendocrine Cancer - it's a sneaky little disease.  I didn't hear it coming but there were a few clues.  I'm putting that down to my own intransigence, doctors need you to tell them about your issues. However, in 2021, I'm still here. https://youtu.be/n17KUCiFaqU?t=7On 8th July 2010, I was sat in front of a secondary care consultant. I asked specifically for this consultant for two reasons, firstly, he carried…
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177Lu-DOTA-EB-TATE – Long-lasting radionuclide therapy for advanced neuroendocrine tumors proves effective

177Lu-DOTA-EB-TATE – Long-lasting radionuclide therapy for advanced neuroendocrine tumors proves effective

Clinical Trials
In the NewsUpdate in March 2021.  Molecular Targeting Technologies, Inc. (MTTI), a clinical stage radiopharmaceutical therapy company, announced the approval of an Investigational New Drug (IND) application by the U.S. Food and Drug Administration (FDA). It enables a Phase I clinical study of the Safety and Dosimetry of its lead product, EBTATE (177Lu-DOTA-EB-TATE), in patients with neuroendocrine tumors (NET).  Clinical Trial number to follow. EBTATE is used in Precision Medicine for Targeted Radionuclide Therapy. The key feature of this technology is the appendage of Evans blue (EB) to the targeting radiopharmaceutical. EB binds reversibly to serum albumin to enhance the radiotherapeutic time window with longer circulation half-life and increase tumor uptake/retention to improve therapeutic outcome.Dr. Chris Pak, President & CEO of MTTI commented: “The clearance of our IND is an important…
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RonnyAllan.NET – Community Newsletter JUNE 2018

RonnyAllan.NET – Community Newsletter JUNE 2018

Newsletters
Summary for June For the first time in 3 years, I didn't write any new articles in a single month (other than the monthly newsletter).  This was due to a prolonged chest infection from which I'm still recovering.  I'm so much better now (thankfully) but I suspect recovery has been slightly hampered by the recent UK heatwave. I managed a relaxing short break on the south coast of England to make up for my cancelled 3 week road trip to Scotland  My weight remains below 10 stone, the lightest I have been for over 30 years. For me, weight loss is a red flag, although this occurrence wasn't sufficient for me to start waving one.  I will get the results of my Ga68 PET scan on 11 July (please note…
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