July, 2018 - Ronny Allan - Living with Neuroendocrine Cancer

30Jul 2018 by Ronny Allan 8 Comments

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…

21Jul 2018 by Ronny Allan 16 Comments

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…

17Jul 2018 by Ronny Allan 8 Comments

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…

08Jul 2018 by Ronny Allan 8 Comments

“What are you doing this afternoon”

Awareness

On 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 out a colonoscopy some 20 months previously which turned out to be negative. Secondly, my GP had referred me to the iron deficiency anaemia clinic, and they wanted to do ….. a colonoscopy. I changed that plan because this "non-issue" was dragging on; quite frankly I wanted it to be resolved quickly, and I wanted it to be resolved in my favour - after all, I wasn't actually ill! Rewind two months, I had an incidental set of blood tests ordered by a nurse following a routine visit to my local medical centre (....... "I think I've lost a bit of weight"). My haemoglobin…

03Jul 2018 by Ronny Allan 4 Comments

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…

02Jul 2018 by Ronny Allan 5 Comments

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…