Translate
Ronny Allan
When you live with any illness, getting through the day can be tough. Trying to get a diagnosis, dealing with a diagnosis, undergoing treatment and then learning to recover and adapt.
I’ve been living with my condition since 2010 and I’m a big advocate of keeping busy, keeping active and keeping my mind occupied. Despite this, there are times with a chronic disease, an invisible disease, an incurable and long-term disease including cancer, occasionally just doing nothing can be very productive in the long term!
Of course, sometimes you have little choice if you’re ill from your condition or something routine.
So now and then, I just breathe in and breathe out (then repeat). It’s very enjoyable!
Take a break if you need one.
Top 10 Posts & Pages in the last 48 hours (auto updates) (Click the titles to read them)
Thanks for reading.
I’m also active on Facebook. Like my page for even more news. Help me build up my new site here – click here and ‘Like’
Sign up for my newsletters – Click Here
My Diagnosis and Treatment History
Check out my online presentations
Check out my WEGO Health Awards
Like my new awareness page – click here or on the photo. (Like rather than follow please!)
Check out my Glossary of Terms – click here
Please Share this post for Neuroendocrine Cancer awareness and to help another patient
Experimental drug for Gastric NET – Netazepide
Gastric NETs When I wrote my post entitled “Spotlight on Gastric Neuroendocrine Neoplasms“, I explained what these were with some emphasis on the association with
A Newsletter from RonnyAllan.NET – 13th March 2023
Newsletter from Ronny Allan – 13th March 2023 Welcome to my new template newsletter compiled using WordPress (my blog app). This is the 2nd in
Fructose intolerance – the NET Effect
Background When I cast my mind back to my very first surgery, I remember all sorts of ‘plumbing’ issues but was told it would take
A tribute to the life and legacy of Miranda Filmer
It’s true to say that Neuroendocrine Cancer is an older person’s disease, the epidemiology is clear on that. But I do see many young people
Treatment for Neuroendocrine Cancer: Beware of the alternatives
The Alternative Hype Cancer Research UK warns of the risks in Alternative Therapies, and I pay great attention to what these guys say. I know
RonnyAllan.NET – Summary of February 2023 – Ronny Allan – Living with Neuroendocrine Cancer
Summary Another great start to 2023 and I thank those who continue to support my social media and this blog. I’m keen to hear any
A spotlight on Gastric Neuroendocrine Neoplasms
What are Gastric NENs Unlike other anatomical types, the word Gastric is used to indicate a tumour (NET) or carcinoma (NEC) in the stomach. The
Sometimes I climb hills just to piss my cancer off
Pissing off cancer is both metaphorical and physical Being diagnosed with a Grade 2 metastatic Neuroendocrine Cancer in 2010 was a bit of a shock.
Belzutifan for the Treatment of Advanced Pheochromocytoma/Paraganglioma (PPGL), Pancreatic Neuroendocrine Tumor (pNET), or Von Hippel-Lindau (VHL) Disease-Associated Tumors
What is von Hippel-Lindau disease (VHL)? Von Hippel-Lindau disease (VHL) is an autosomal dominant disease that can predispose individuals to multiple neoplasms. Germline pathogenic variants in the VHL gene predispose individuals to specific
I agree with Ronny, with liver function no single test stands alone. I am 2 years post-dx with multifocal small intestine NET, no signs of recurrence so far but I am still symptomatic (not carcinoid syndrome, other symptoms) so have gone through a lot of working up in the past 2 months. I also had elevated liver panel results across the board last year for several months, which very much concerned my oncologist, and the GI specialists I met with were equally puzzled, but after a second exploratory surgery in late April 2017 almost all results came back down, and my oncologist’s theory is that the liver wonkiness were due to a long-running small bowel obstruction which the surgery resolved (at least at the moment).
I recommend this excellent website for understanding all kinds of laboratory results; here’s the liver panel information:
https://labtestsonline.org/tests/liver-panel
[…] Ronny’s latest post – Things to do today […]
Ronnie quick question when you were diagnosed where was your primary tumor what stage were you when diagnosed were you well differentiated or poorly differentiated what was your Ki 167
Did you metastasize two other organs or was it contained to a primary site
The reason why I ask is I have advanced neuroendocrine cancer gi-net and my backdrop is pretty damn bad so I’m just curious what kind of protocol you’ve been on if you’ve gone into clinicals or they caught it pretty early and you have a good prognosis
Thank you for your time I appreciate if you could send me back an answer you could send it to my email privately or post here in in the comment thread
great question. Stage 4, Grade 2 Small Intestine NET (via liver biopsy). Diagnosed 2010 showing symptoms of Carcinoid Syndrome. Fairly hefty surgery split across 2010 (primary plus locoregional) and 2011 (liver). Expert surgeon. Lanreotide since 13 Dec 2010. Still got tumors remaining in liver and some dim lights in other areas. Distant nodal surgery in 2012 at first sign of Chromogranin A (CgA) rise. Apart from this small spike in 2012, CgA and 5HIAA been in range. All the detail is in the post you’ve commented on.
My blood work is followed very closely my liver results have been going up consistently there over a hundred right now and just three months ago it was at 35 that’s a bad sign I have a lot of Mets to my liver
when you say ‘liver results’ – what test do you mean. Is it ALP?
Yes alt and.alp..both of those metrics
I had elevated ALP after my liver surgery and it stayed elevated for 18 months before going back to normal. My ALT fluctuates in and out of the higher range figure (not terribly high). Not sure if that helps? ALP needs to be assessed alongside other LFTs for proper meaning apparently. When only ALP is elevated it could mean something totally different than if the others were also abnormal. For example if only ALP elevated, then that could be something as simple as Vit D deficiency. This article is technical but reasonably readable http://gut.bmj.com/content/67/1/6 Your doctors should have a view.
Thanks much ronny!!
Do you know of the cancer test that has been FDA approved that shows very high efficacy rates to detect cancer before it starts and even if you have cancer stage 1 2 3 or 4 that it will detect the cancer at pretty high percentage rates for example if you have stage 4 it’s got a 72% rate if you have stage 1 it will detect it at about 22% and if you are precancerous it has about a 15% rate of accuracy do you know the name of that test and the company that does it it’s here in the USA
for NETs?
I don’t know it’s some cancer test for I think 10 different cancers I don’t know if Nets was included I highly doubt it
https://m.facebook.com/story.php?story_fbid=997002147104743&id=476922399112723
Ronnie do you have an email address that I can send you something that I need to get some statistic and scientific metric research on I’m on a timeline and I just got this request three days ago before this weekend and I need to produce something by February 23rd I’d like to send you an email or the email that I got it’s really a very very important project I’m working on and it’s a game changer in the United States if I can get this going I want to send you what I have to see if you can direct me and help me
If you can send me an email to my email I just don’t want to have anybody else eat our Communications
I cannot promise I can help not just because of the subject matter but I am totally maxed out to the point of putting all my advocacy work on hold for a week! contact@ronnyallan.com (the inspiration behind this actual article you’re commenting on)