National NET Patient Day
November 7th, 2020
Information Day for Irish NET Patients
The National NET Patient Day has had to go virtual this year and the NET Patient Network is determined to make it as informative as it has been for many years.
Because this is a virtual event, you need to register to attend and you will receive a link to click on to attend the event, via email, AFTER you register.
Here is information about the event, how to get questions answered during the Q&A and what you need to do to see the event.
We will be using “Go-To-Webinar” to host the event, it is a web-hosted video conferencing software, a bit like Zoom, so you will be able to see a live video of the event, but no one can see you. This can be used on computers, tablets & most mobile phones.
The Host will be able to see your name, so he/she will know who questions come from in the chat/text area.
On the day of the event, you just click on a link you will have received in the email you will sent after you register and click OK or Allow to install the software.
That’s it, it will automatically start and the event will begin.
For anyone unsure of how this works, on Wednesday 28th October at 7PM to 7:20 PM, if you click on the Event link, you can get into a Test/demo event, to make sure everything will be ok on the day.
10.00 – 10.05
|Welcome and introduction (Mark McDonnell, Chair NPN)|
|10:05 – 10:20||NETs and Covid19 (Prof Dermot O’Toole, National Lead for NETs, Prof Donal O’Shea – NET CoE, SVUH)|
|10:20 – 10:30||Southern Region Update ((Dr Derek Power, Mr Críostóir Ó Suilleabháin – Cork University Hospital / Mercy University Hospital)|
|10:30 – 11:00||Treating the Patient and Not the Disease (Prof Rodney Hicks – Peter McCallum Cancer Centre, Australia)|
|11:00 – 11.05||Break|
|11:05 – 12:10||Q&A Panel with NET Specialists|
|12:10 – 12:15||Closing address (Tommie Gorman, President NET Patient Network)|
St Vincent’s University Hospital
Prof Dermot O’Toole, Prof Donal O’Shea, Mr. Justin Geoghegan and Ms Lisa Cullen
Cork University Hospital
Mr Críostóir Ó Suilleabháin and Dr Derek Power
Peter McCallum Cancer Centre, Victoria, Australia
Prof Rodney Hicks
Ask A Question
Because of time constraints, we will not be able to allow patients to speak during the event, but we will have a host, who will ask questions on your behalf.
There are 3 ways to have your questions answered during the Q&A
- There is a section on the registration form to ask short questions, by writing them on the form before you submit it.
- You can email your questions to [email protected], to be sent to us by November 4th 2020.
- You can ask questions on the day itself, using the Q&A chat option in Go-To-Webinar.
Trial Event: Wednesday 28th October @ 7pm – 7.20pm
Worried about the technology? Not sure how to see the Event?
This is a way to make sure that you will be able to see the Event on November 7th.
On Wednesday 28th October at 7PM to 7:20 PM, if you click on the Event link that will be emailed to you after you register (instruction on registering are below) and you can get into a Test/demo event made available to all participants, so that you can test your internet connection, getting “into” the Event and familiarize yourself with how to ask a question during the Q&A.
We recommend that everyone takes the opportunity to use this trial/demo event, as you will be sure that you can view the actual event in November.
How to Attend the Event
As mentioned before, we will be using Go-To-Webinar to run the event, this can be used on computers, tablets & most mobile phones.
We recommend using a computer or tablet, as there will be some Slides to look at on-screen during presentations, which would be difficult to see on a mobile phone.
The steps to attend are;
- First, if there are any questions you want to ask, you will be able to send them to us at the same time you register, so do take the time to write them out before you register.
- Next, you need to click on the registration link below.
- Check your email for the Event details that will be sent to you.
- Read the email, you will see a link to click on to attend the Event.
- On Wednesday 28th around 7PM, click on the link, to attend the trial/demo. This will install the Go To Webinar software and allow you into the trial/demo event & the event in November.
- If you miss this trial/demo, just click the link in the email as soon as you get the email, it will still install the Go To Webinar software, so you will be ready for the event. Once installed, you can close.
This is the registration link:
What If I Have Problems with getting into the Event or with Go-To-Webinar?
If there are any problems, getting on to the event, we have an email address for you to contact to get help, [email protected]
Please write your issue in as much detail as possible.
We look forward to an interesting event & do hope that you get the opportunity to attend.
As always, a big “Thank You” to the NET Patient Network Sponsors,
Novartis, Ipsen and Pfizer.
If you want to download or print this information, here is a PDF document of this page, click to download.
Here is a list of Questions NET Patients have already sent us to ask the experts on the day.
- Is it possible that Nets will not return having successfully removed them by operation and scans coming back clear 4 years later? / If you have a tumour surgically removed how can you have the same tumour recur 6 years later?
- Will the annual test be carried on as usual? (Consultation/scans/etc)
- Should people with Carcinoid Syndrome diet to reduce their serotonin levels? / Are short term injections of Sandostatin useful for carcinoid syndrome?
- Is there a limit on the number of prrt sessions?
- Had treatment in Uppsala in 2009/2010 would this affect kidneys now?
- Are there any other therapies available after prrt?
- Once there is liver involvement can surgery or ablation be considered in that area alone even if other areas would be too risky?
- Will Brexit affect availability of Sandostatin LAR, Lanreotide or other drugs in the treatment of NETS?
- Is there any update information for Lung Neuroendocrine Patients who also have Carcinoid Syndrome Symptoms after surgery removal?
- I would like to know how long is the waiting list for the Gallium Pet scan. I am still waiting for even a date for the scan.
- What are the best treatments in this country in relation to high grade Neuroendocrine Cancer & if none are available in Ireland what are the best treatments abroad in treatment of high grade NEC?
- Are there any clinical trials in Ireland or worldwide at present involved in the treatment of high grade Neuroendocrine Cancer currently open?
- I have been on xgeva for almost 2 years, have the team seen good results from this drug?
- The gallium per scanner is a great addition, is there anything else new on the horizon?
- In relation to Detectnet which was approved by FDA in September 2020, apparently Detectnet cheaper than Gallium68 to produce & mentioned by Dr.O’Toole last year.
- When will Detectnet(Copper CU64 Dotatate) become widely available in Ireland as a radioactive diagnostic tool with PET scans in localizing somastatin receptor NETS?
- How many of these scans could be done in a week in comparison to Gallium 68?
- In relation to SBRT(Stereotatic Body Radiation Therapy)and its treatment of Nets.
- What type of NETS or NEC is SBRT(Sterotatic Body Radiation Therapy) best suited to treat?
- What are the risks involved?
- Does anyone have problems with restless leg?