New PET findings after COVID-19 vaccination: Keep Calm and Carry On?

New PET findings after COVID-19 vaccination: Keep Calm and Carry On?

Patient Advocacy
After a few months of introducing C-19 vaccines, many cases of false-positive lymph nodes were reported on nuclear PET scans, some of which led to unnecessary biopsies and unnecessary worry for the patients concerned.According to Mayo Clinic, the positive nodes were on the same side as the vaccine shot in the cases where the injection site was known.  Mayo added that some cases had uptake in the deltoid muscle, which is normally where vaccine injections are given, leading to increased suspicion of false positive in cases where uptake was in both deltoid muscle and axillary lymph nodes (armpit).  At least one case was found in the supraclavicular nodes (clavicle area), but it was noted that might have been a stronger immune reaction due to the patient undergoing immunotherapy.This issue had…
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Clinical Trial: Triapine and Lutetium Lu 177 Dotatate for Neuroendocrine Tumors

Clinical Trial: Triapine and Lutetium Lu 177 Dotatate for Neuroendocrine Tumors

Clinical Trials
What is PRRT? I'm guessing most of my readers know what Peptide Receptor Radiotherapy (PRRT) is.  But for those new to this field, read more here What is Triapine? Triapine is a ribonucleotide reductase (RNR) inhibitor, I.e. it helps repair DNA.  When I research this drug, I can see it is used in numerous examples of clinical trials in an anti-cancer setting alongside radiotherapy and chemotherapy, in many cancers. Triapine in NET There is currently a trial of Triapine with Lutathera (PRRT) (11 major US hospitals).  This study was testing the hypothesis that triapine is an effective radiation sensitizer that can be safely combined with peptide receptor radionuclide therapy and can improve antitumor activity of Lutetium Lu 177 Dotatate, e.g. increase the objective response rate (ORR) above that found in…
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CAPTEM for Neuroendocrine Tumours

CAPTEM for Neuroendocrine Tumours

Clinical Trials
What is CAPTEM? Capecitabine is an oral drug used alone or with other drugs to treat certain types of colorectal cancer and breast cancer. It is also being studied in the treatment of other types of cancer including in combination with a second drug. Capecitabine is taken up by cancer cells and breaks down into fluorouracil, a substance that kills cancer cells. Xeloda is a type of antimetabolite. Also called Xeloda.Temozolomide is an oral drug used to treat adults with certain types of brain tumors. It is also being studied in the treatment of other types of cancer including in combination with a second drug. Temozolomide damages the cell’s DNA and may kill cancer cells. It is a type of alkylating agent. Also called Temodar.Capecitabine (brand name Xeloda) plus Temozolomide (brand…
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Living with Cancer: Don’t cross the bridge until you come to it

Living with Cancer: Don’t cross the bridge until you come to it

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
When I read comments in my private Facebook community group, I can see that many people do get concerned about upcoming scans and other rest results.  I think the imaging results cause the most angst because those are probably the most telling results someone with Neuroendocrine Cancer will get.  Has it grown, has it shrunk?  What if .......  Many patients experience fear, anxiety, and worry while waiting for imaging test results. It’s a completely normal and understandable feeling.  How can you conquer this fear or is it just something you have to live with? Personally, I look at things more clinically than the average person, perhaps that's just the way my brain is wired.  For example, I try not to be concerned about results over which I have little control once the…
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Clinical Trial:  Dostarlimab, anti–PD-1 monoclonal antibody in Neuroendocrine Carcinoma

Clinical Trial: Dostarlimab, anti–PD-1 monoclonal antibody in Neuroendocrine Carcinoma

Clinical Trials, Treatment
BackgroundFollowing the Americal Society of Clinical Oncology (ASCO) conference in June 2022 (ASCO is the biggest Oncology event in the world), the media widely featured the results of the Phase 2 clinical trial of the drug Dostarlimab, an anti–PD-1 monoclonal antibody. The media often looks for headline-grabbing stories and this was one of them.  One UK TV outlet said they may have found the cure for cancer, which is a reckless statement when you look at the size and boundary of the clinical trial referenced.  The detail is, that this was a phase 2 trial for "rectal adenocarcinoma", but specifically locally advanced mismatch repair-deficient (dMMR) rectal cancer, allowing them to avoid surgery, chemotherapy, and radiation, at least for the time being. Nonetheless, the complete response in all 12 was clinically…
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Low and High Residue Foods

Low and High Residue Foods

Diet and Nutrition, Patient Advocacy
It's clear that no single diet is suitable for everyone, there are just too many variables in Neuroendocrine Cancer. They are a heterogeneous grouping of cancers with different issues; and to a certain extent, different types and different circumstances can throw up different problems.  If you’re not careful, you can go into the 'nth degree' on this subject, so tailored advice from a well-versed registered dietitian is always the preferred option.  I wanted to look at particular circumstances in this article as a low residue diet may be unsuitable for many Neuroendocrine Cancer patients. A low residue diet is sometimes called a low fibre diet.  For others, it might be something they encounter during procedures such as a Colonoscopy or before and after bowel surgery. It could also have some…
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On the Cancer Journey, don’t forget to live your life

On the Cancer Journey, don’t forget to live your life

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Many things in life can seem like a bump in the road or a journey along a windy road not sure where the next turn is.  In some ways, a cancer diagnosis is another of these inopportune moments, albeit one with many facets.  With incurable Neuroendocrine Tumours, many people need to be prepared for a long journey. Beware of the common trap of thinking in terms of all or nothing; or rushing to conclusions.  Even with localised NETs which have been removed with curative intent, the journey may continue for a while until your doctors and you are sure the destination has been reached.  In a few cases, journeys may be extended or new ones started.  For late stage incurable NETs, thinking your journey is going to be a short…
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