- 271,299 hits
- Don’t believe the hype – 10 Neuroendocrine Cancer Myths debunked April 6, 2017
- There’s no such thing as a ‘tickbox’ Neuroendocrine Cancer patient April 4, 2017
- NETwork with Ronny © – Newsletter March 2017 April 1, 2017
- In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life March 21, 2017
- Poker Face or Cancer Card? March 20, 2017
- NETwork with Ronny © – Newsletter February 2017 March 1, 2017
- It’s been 5 years since I saw a scalpel (….but my surgeon is still on speed dial) February 27, 2017
- Recent Progress in NET Management – Positive presentation from Jonathan R Strosberg MD February 21, 2017
- 25 Life Lessons From a Two-Time Cancer Survivor February 20, 2017
- Things not to say to someone with cancer February 2, 2017
- NETwork with Ronny © – Newsletter January 2017 February 1, 2017
- Endoscopy for NETs – taking the camera to the tumour January 27, 2017
- Road ahead closed – Bowel Obstructions January 25, 2017
- In the news: Neuroendocrine Tumour Drug in Trial – Cabozantinib January 21, 2017
- Progress report on NETSPOT® and PRRT (Lutathera®) January 18, 2017
- Neuroendocrine Cancer: Nodes, Nodules, Lesions January 17, 2017
- Neuroendocrine Cancer: To cut or not to cut? January 14, 2017
- Does your body now have an extra organ? The MESENTERY January 4, 2017
- NETwork with Ronny © – Newsletter December 2016 January 1, 2017
- Lanreotide vs Octreotide December 28, 2016
- Keep your light burning December 18, 2016
- Neuroendocrine Tumours: a spotlight on Pheochromocytomas and Paragangliomas December 14, 2016
- Drum Roll – Ronny Allan wins WEGO Best in Show ‘Community’ 2016 December 6, 2016
- Neuroendocrine Tumours – Let’s give Carcinoid Crisis a red card! December 5, 2016
- NETwork with Ronny © – Newsletter November 2016 December 2, 2016
- NET Syndromes – chicken or egg? November 30, 2016
- Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it. November 29, 2016
- Neuroendocrine Tumours – benign vs malignant November 28, 2016
- Happy Thanksgiving November 24, 2016
- Chemo or not Chemo – that is the question November 23, 2016
- Palliative Care – it might just save your life November 18, 2016
- “You must be doing OK, you’ve not had chemotherapy” November 16, 2016
- One every 2 hours November 10, 2016
- Scans for Neuroendocrine Cancer – If you can see it, you can detect it! November 5, 2016
- Neuroendocrine Cancer – Exciting Times Ahead! November 2, 2016
- Let’s hear one massive THUNDERCLAP on NET Cancer Day October 26, 2016
- Neuroendocrine Cancer: Hurry up and wait October 21, 2016
- Did you hear the one about the constipated NET patient? October 18, 2016
- Neuroendocrine Cancer – were you irritated by your misdiagnosis? October 11, 2016
- Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had October 5, 2016
- Neuroendocrine Cancer: Patient Power! October 1, 2016
- Neuroendocrine Cancer – tumour markers and hormone levels September 28, 2016
- “Not the Stereotypical picture of sick” September 19, 2016
- Procrastination – it’s a killer September 19, 2016
- Neuroendocrine Cancer – the diarrhea jigsaw September 15, 2016
- Please vote for Neuroendocrine Cancer September 12, 2016
- Serotonin – the NET effect September 8, 2016
- Neuroendocrine is not your average cancer but it can be pretty mean August 25, 2016
- Stop talking about it, just go do it! August 24, 2016
- Not every illness is visible August 8, 2016
- Neuroendocrine Cancer Nutrition Blog 4 – Food for Thought? August 2, 2016
- Living with Cancer – or Cancer Survivor? August 1, 2016
- Exercise and Cancer: Forward is Forward July 27, 2016
- NET Cancer: Somatostatin Receptors July 25, 2016
- NET Cancer: Troublesome Thyroids July 23, 2016
- What you don’t know might kill you June 24, 2016
- Neuroendocrine Cancer – it can be ‘smoke and mirrors’ June 15, 2016
- Intra-Operative RadioTheraphy (IORT) for Neuroendocrine Cancer – new landmark treatment launch June 13, 2016
- Let’s talk about living with NETs June 9, 2016
- Make some noise for a silent cancer June 8, 2016
- It’s scary searching Cancer online June 7, 2016
- Turning points May 28, 2016
- The 5 E’s (of Carcinoid Syndrome) May 25, 2016
- PRRT and Chemo combination therapy – on trial May 20, 2016
- Don’t worry, I really am OK! May 19, 2016
- I can do it May 9, 2016
- Never mind the Bollocks April 21, 2016
- NET Cancer – unexpected detours April 21, 2016
- Living with Neuroendocrine Cancer – it takes guts April 15, 2016
- 5 years since liver surgery April 12, 2016
- Somatostatin Analogues and delivery methods in the pipeline? April 4, 2016
- US FDA Approves Telotristat Ethyl (XERMELO™) – an oral treatment for Carcinoid Syndrome March 31, 2016
- 100,000 blog views – thank you! March 21, 2016
- I’m only as good as my last scan March 21, 2016
- Dear Doctors – There’s no such thing as a ‘good’ cancer! March 17, 2016
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5 years ago today, I had a bunch of lymph nodes removed. Two separate areas were resected, only one was showing growth but both were showing up as hotspots on an Octreoscan. I had known since shortly after diagnosis in 2010 that ‘hotspots’ were showing in my left ‘axillary’ lymph nodes (armpit) and my left ‘supraclavicular fossa’ (SCF) lymph nodes (clavicle area). Some 10 months previously, I had a major liver resection and 5 months prior to the liver resection, I had a small intestinal primary removed including work on some associated complications. There had always been a plan to optimise cytoreduction of my distant metastases, it was just a matter of timing. I still can’t get my head round why metastases from a small intestinal NET managed to get to this area but not others!
Distant nodal metastasis treatment
A total of 9 nodes were removed from my left armpit (a very common operation for breast cancer patients). The surgeon had inspected the area and found some were palpable and my normally stable Chromogranin A marker was showing a small spike out of range. During the same operation under general anaesthetic, an ultrasound directed SCF nodal ‘exploration’ was carried out. When biopsied, 5 of the 9 resected axillary nodes were tested positive (Ki-67 <5) but the 5 SCF nodes removed were tested negative. The subsequent Octreoscan still lit up in the left SCF area but the lights on the left axillary area were ‘extinguished’. There is no pathological enlargement or pain in the left SCF area – so this is just monitored.
Apart from a very faint scar in the left SCF area, there does not appear to be any side effects from this exploratory surgery. The left axillary area cut is well hidden by hair growth but I do sense a lack of feeling in the area. Additionally, I have a very mild case of lymphedema in my left hand which occasionally looks slightly swollen – the consequences of cancer and its treatment. Fluid build-up, or post-operative seroma, can be a side effect of a lymphadenectomy. In fact, within a month of the operation, I had to have circa 160mls of fluid removed on 4 occasions from my armpit. It was uncomfortable and painful, resulting in additional time off work. The surgeon used a fine needle aspiration to draw out the fluid, a painless procedure. It eventually cleared up and everything was back to normal. The specialist said my left arm would be slightly more susceptible to infections and suggested to avoid using my left arm for blood draws and other invasive procedures and injuries.
Other close calls (“to cut or not to cut”)
I have a 19mm thyroid lesion which was pointed out to me in 2013. This has been biopsied with inconclusive results. Although the thyroid is an endocrine gland, it looks like a non-NET problem so far. Thyroid nodules are in fact very common and statistically, 50-70% of all 50-70 year olds will have at least one nodule present (i.e. if you are in your 50s, there is a 50% chance you will have one nodule and so on). The vast majority will never bother a person while they live. I attend an annual Endocrine MDT where this is monitored in close coordination with the NET MDT. It’s actually managed by the same surgeon who carried out the nodal work above.
I have a 3mm lung nodule, discovered in 2011. Apparently, lung nodules are a pretty common incidental finding with 1 per 500 X-rays and 1 per 100 CT scans finding them. This is monitored and hasn’t changed since noted.
You may also be interested in my post “Neuroendocrine Cancer – to cut or not to cut”
I watch and wait but I also watch and learn. Make sure you are under some form of surveillance.
Thanks for reading
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I recently wrote a blog called Neuroendocrine Cancer – Exciting Times Ahead! I wrote that on a day I was feeling particularly positive and at the time, I wanted to share that positivity with you. I genuinely believe there’s a lot of great things happening. Don’t get me wrong, there’s a lot still to be done, particularly in the area of diagnosis and quality of life after being diagnosed. However, this is a really great message from a well-known NET expert.
In an interview with OncLive, Jonathan R. Strosberg, MD, associate professor at the H. Lee Moffitt Cancer Center in Florida, discussed his presentation on NETs at a recent 2016 Symposium, and shed light on the progress that has been made in this treatment landscape.
OncLive: Please highlight some of the main points from your presentation.
Strosberg: The question I was asked to address is whether we’re making progress in the management of NETs, and I think the answer is unequivocally yes. Prior to 2009, there were no positive published phase III trials.
Since then, there have been 8 trials, 7 of which have reached their primary endpoints. So it’s been a decade of significant improvement. And even though none of these studies were powered to look at overall survival as an endpoint, we’re certainly seeing evidence of improvement in outcomes.
OncLive: What are some of the pivotal agents that you feel have impacted the paradigm in the past several years?
Strosberg: The first group is the somatostatin analogs. We use them to control hormonal symptoms like carcinoid syndrome, but with the CLARINET study, we now know that they substantially inhibit tumor growth.
The next significant drug we use in this disease is everolimus (Afinitor), an oral mTOR inhibitor, which is now approved in several indications based on positive phase III studies. The first was in pancreatic NETs and subsequently, based on the RADIANT-4 trial, it was also approved in lung and gastrointestinal NETs. So that was an important advance.
The next important category of treatment is radiolabeled somatostatin analogs, otherwise known as peptide receptor radiotherapy. The one that’s been tested in a phase III trial is lutetium dotatate, also known as Lutathera. It was tested in patients with progressive midgut NETs and showed a very substantial 79% improvement in progression-free survival, and a very strong trend toward improvement in overall survival, which we hope will be confirmed upon final analysis.
OncLive: Are we getting better at diagnosing and managing the treatment of NETs?
Strosberg: Certainly. I think pathologists are better at making the diagnosis of a NET, rather than just calling a cancer pancreatic cancer or colorectal cancer. They’re recognizing the neuroendocrine aspects of the disease, and doing the appropriate immunohistochemical staining.
We also have better diagnostic tools. We used to rely primarily on octreoscan, and in many cases we still do, but there is a new diagnostic scan called Gallium-68 dotatate scan, also known as Netspot, which has substantially improved sensitivity and specificity. It’s not yet widely available, but it is FDA approved and hopefully will enable better diagnosis as well as staging in the coming years.
And, with the increase in number of phase III studies, we’re developing evidence-based guidelines, which will hopefully lead to more standardization, although knowing how to sequence these new drugs is still quite challenging.
OncLive: With sequencing, what are the main questions that we’re still trying to answer?
Strosberg: If we take, for example, NETs of the midgut, beyond first-line somatostatin analogs, physicians and patients often face decisions regarding where to proceed next, and for some patients with liver-dominant disease, liver-directed therapies are still an option.
For others, everolimus is a systemic option, and then hopefully lutetium dotatate will be an option based on approval of the drug, which is currently pending. Knowing how to choose among those 3 options is going to be a challenge, and I think there will be debates. Hopefully, clinical trials that compare one agent to another can help doctors make that choice. It’s even more complicated for pancreatic NETs. Beyond somatostatin analogs, we have about 5 choices—we have everolimus, sunitinib (Sutent), cytotoxic chemotherapy, liver-directed therapy, and peptide receptor radiotherapy. It’s even more challenging in that area.
OncLive: Are there any other ongoing clinical trials with some of these agents that you’re particularly excited about?
Strosberg: There’s a trial that is slated to take place in Europe which will compare lutetium dotatate with everolimus in advanced pancreatic NETs, and I think that’s going to be a very important trial that will help us get some information on both sequencing of these drugs, as well as the efficacy of Lutathera in the pancreatic NET population, based on well-run prospective clinical trials. I’m particularly looking forward to that trial.
OncLive: Looking to the future, what are some of the immediate challenges you hope to tackle with NETs?
Strosberg: One area of particular need is poorly differentiated neuroendocrine carcinomas. That’s a field that’s traditionally been understudied. There have been very few prospective clinical trials looking at this particular population, and we’re hoping that will change in the near future. There are a number of trials taking place looking at immunotherapy drugs. If these agents work anywhere in the neuroendocrine sphere, they are more likely to work in poorly differentiated or high-grade tumors, in my opinion, given the mutational profile of these cancers. So that’s something I’m particularly looking forward to being able to offer these patients something other than the cisplatin/etoposide combination that goes back decades, and is of short-lasting duration.
Thanks for reading
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Sometimes, a blog post comes along and it just resonates! This was one I found via some new friends in Anti-Cancer Club (check it out – sign up for their newsletter). I got chatting with the author who has given me permission to post it here. Shari Berman is a two-time cancer survivor. She was diagnosed with Hodgkin’s Lymphoma at age 25, days after returning from her honeymoon and a second time with breast cancer 8 years later. I posted here full CV below.
Her post “25 Life Lessons From a Two-Time Cancer Survivor” is a fantastic summary of a positive approach to life, despite a cancer diagnosis (or in Shari’s case, two). I’ve seen some similar quotes before but Shari has collated them into one very powerful list. I’m not suggesting they all apply to everyone but perhaps even a ‘pick n mix’ approach would be useful. For example, I couldn’t do number 8 – they make me sneeze! (sorry Shari!)
The first 10 are here, you can see the others by linking below:
1. Life is short. Don’t wait for the perfect moment to DO or SAY something important to you.
2. Death is not failure. It is part of life and the more we accept that fact the more we can live intentionally and without as much fear.
3. A simple act of kindness can make someone’s day and leave a lasting impression.
4. You have the ability to make an impact. Leave your mark. Share your experience, your knowledge with others.
5. “Hope” is powerful.
6. If you don’t know what to say to someone in crisis, try saying “I don’t know what to say. But I want you to know I am thinking of you.”
7. You are stronger than you think. Trust me, you are.
8. Life is better with a dog9. Trust your gut. Intuition is powerful.
10. It is important to take a “time-out”. Walking clears your head.
Read the remainder here, you won’t be disappointed. CLICK HERE to continue
Read Shari’s CV here:
Shari graduated from Cornell University and worked as a Human Resources Manager in the financial services industry for 15 years. After losing her mother to lung cancer she decided to spend her time advocating for patients and lending her perspective and expertise as patient, long-term survivor, caregiver and business professional.
Shari is a former co-chair of the Dana Farber Adult Patient Family Advisory Council where she effectively led an effort to restructure the Council and strengthen its role within the institution. She also served on Dana Farber’s quality committees and is currently a member of the Quality and Patient Safety Committee of the Massachusetts Board of Registration in Medicine.
Shari has spoken on behalf of Dana Farber at many fund-raising events and presentations on survivorship and patient care. Her talks have focused on a variety of topics including her personal experience with cancer, survivorship issues, patient centered care and how to develop and sustain an effective Patient and Family Advisory Council. Shari has also been asked to consult on a variety of projects with organizations such as the National Academies of Medicine, (formally Institute of Medicine), American Society of Clinical Oncology (ASCO), The Journal of American Medical Association (JAMA) and Livestrong.
Shari started a blog called Life According To Somebody in 2015 and writes about a variety of issues through the lens of a cancer survivor. She’s also recently started up a new project called The Patients Prescription (thepatientsprescription.com). It’s still a ‘work in progress’ but check it out to see if this is something which interests you.
The other link to Shari’s featured post was found here: https://anticancerclub.com/inspiring-stories-from-cancer-survivors/25-life-lessons-two-time-cancersurvivor/
Thanks for reading
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This topic comes up regularly on patient forums, twitter, Facebook….. in fact everywhere! Personally, I don’t tend to get too excited about it, although there can be extremes. Most people (not all) are just stumped to know exactly what to say. Even as a person with cancer, I sometimes feel awkward when faced with someone I just found out has a serious illness. It’s really difficult to know what to say, knowing how they might react and it’s particularly difficult if you don’t really know the person, for example on social media, you could be talking to someone who you have never met, you don’t know anything about them; and they may not even speak English as a first language (those who have tried google/twitter or Facebook translator, will know it’s not perfect!).
I’ve dabbled in this arena before with my blogs “I look well but you should see my insides” and “You must be doing OK, you’ve not had chemotherapy”.
This video was produced by BBC and shared by my friends in Macmillan Cancer Support; and it’s getting a huge amount of comments and opinions. Someone suggested it should have been entitled “Things to say to someone with cancer” and there’s something in that I guess – although I suspect it’s just as difficult!
Personally, I think there’s no right or wrong answer. However I know a lot of you guys will enjoy the video
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Welcome to my third ‘community’ newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!).
January was a month for breaking records. I recorded the biggest ever amount of views in any one day, any one week and now any one month and it will probably be a long time before they’re broken again! This was mainly due to the fantastic support you showed for one particular blog post The Anatomy Of Neuroendocrine Cancer. Thank you all so much ♥
January was also a month for making new friends after being invited to speak to an audience of 30 pharma managers at Ipsen’s Germany HQ near Karlsruhe. I was made very welcome by the Ipsen staff and I think it’s great they want to hear the patient voice. Bad weather was coming in fast and I only just escaped in time from Frankfurt Airport, suffering a 2 hour delay while the plane was ‘de-iced’. Nonetheless, I really enjoyed a flying visit to a country where I had lived for 12 years in the 70s/80s. See my Facebook post about this visit: https://goo.gl/hyJ0Si
New Blogs Published
A busy month for new blogs. Due to the vagaries of Facebook inner workings, some of these may not have even shown on your timeline. So, ICYMI …….here’s a summary with links:
- My Dec Newsletter!
- Does your body now have an extra organ? The MESENTERY – I renamed the title after a few days, other scientists are disputing whether it is an extra organ – still interesting for NET patients.
- Neuroendocrine Cancer: Nodes, Nodules and NET Nonsense – Lymph nodes, nodules, lesions and ‘NET nonsense’. Living with Neuroendocrine Cancer!
- Progress report on NETSPOT® and PRRT (Lutathera®) – The most up-to-date information straight from the horse’s mouth.
- In the news: Neuroendocrine Tumour Drug in Trial – Cabozantinib – news of a trial of a novel biological therapy led by Dr Chan and Dr Kulke from Dana Farber
- Road ahead closed – Bowel Obstructions – the worry of a bowel obstruction and a nice card to carry!
- Endoscopy Entertainment – the joys (but necessity) of having a tube stuck down your throat!
Other News in Jan 2017
New Audiences for NET Cancer. From Day 1, I said it was my aim to find new audiences for NETS rather than just share stuff within our own community. Two new openings in Dec to report:
- Ipsen isn’t really a new audience but the individual employees at their German HQ are now more aware of life with Neuroendocrine Cancer. See my Facebook post about this visit: https://goo.gl/hyJ0Si
- I’m ‘extremely’ active on twitter and I find a lot of my research stuff there. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. You can sign up for this newsletter here as I won’t be posting it every day. Click this link and sign up if you think this is something you’d be interested in receiving.
- I’m making new friends in the interventional radiologist community having been invited to join their twitter chat. Many of us will know an Interventional Radiologist (some are known as Interventional Oncologists) following treatment (e.g. a liver embolization). I’m hoping to soon have access to some great videos about their work with NETs.
- I’m proud to have been asked to become a ‘Community Champion’ on the Macmillan Cancer Support Forum. I’ll be reporting on this in the coming weeks.
Patients Included. A new campaign for 2017 and I’ll shortly be bringing you news of an opportunity in Mar 2017. We want to be included right?
Blog Milestone. My blog tipped over 220,000 views in Jan and I’m half way from the 1 Jan position to reaching a quarter of a million. Thanks – keep sharing!
Facebook Milestone. My Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested. The picture of the invite button shown here is an example from a windows computer, it may differ on other platforms.
- Facebook – 3985. This is a key outlet for my blog – please encourage others to like my page (if you’d like to know how to use your Facebook to invite others to my page – let me know, I can provide you with a step by step approach). Please also join my 2017 awareness campaign event here (select ‘Going’)
- Twitter – 3636 / 2807 Follow me here @RonnyAllan1 / @NETCancerBlog
- Total Blog Views: 224,703
- Blog with most views: 7,572 – The Anatomy of Neuroendocrine Cancer
- Most blog views in one day: 2043 on 15 Jan 2017. Why the spike? ….. “The Anatomy of Neuroendocrine Cancer”
- Most blog views in one month: 19,186 in Jan 2017. Why the spike? …. “The Anatomy of Neuroendocrine Cancer” and “Ignore this post about Neuroendocrine Cancer“
Where did January Blog views come from – Top 10 countries:
For interest the 10 Ten Facebook followers by City:
Thanks for your great support in January – a great start to 2017.
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