BREAKING NEWS for email followers
There’s a lot of questions doing the rounds on forums and messages about the approval of Lutathera (PRRT) in USA, Europe and other places. The latest we know is in the red print headlines below. Followed by an update of known activity by region/country and a short primer for those not sure about PRRT.
USA – 26 Jan 2018. FDA approves Lutetium Lu 177 Dotatate (Lutathera®) CLICK HERE
See also here
(full guidance will be updated when received)
ALL – 7 Dec 2017. Novartis and Advanced Accelerator Applications (AAA) Announced that Novartis is buying AAA and the process has been completed. AAA is now a Novartis Company. Read here This will not have any effect on approval timelines.
EUROPE – 29 Sep 2017. AAA Announced that the European Commission (EC) has approved the use of Lutetium Lu 177 Dotatate (Lutathera®). Despite the treatment being used…
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I don’t look ill. I didn’t even look ill when I was diagnosed with metastatic and incurable Neuroendocrine Cancer. People have even told me I look better than many people my age who do not have an incurable disease! There’s a bit of me which is very happy with that predicament, although I’d rather look less good and not have cancer.
Many cancer patients have illnesses that cannot be seen, they are invisible. I know quite a lot of cancer patients who don’t look ill but I know they have a life threatening disease and things could change quickly. For example, some cancer patients who look really well can need quick access to facilities such as toilets as side effects can sometimes not only be instant but also painful. Some just need a place to administer medicine when they need it, often this occurs in the most inconvenient places. There are many other ‘invisible’ problems that might strike at any moment.
Some patients actually avoid going on long journeys (or even short journeys), some avoid social activities and simply remain at home because their illness is unpredictable – they become very risk averse. And they look really well! And it’s terrible they feel they need to do this.
I know some patients who are classed as ‘disabled’ because of their condition (I’ll use the word ‘disabled’ as a generic term because the terminology differs from country to country). I guess some of them don’t look disabled (in terms of people’s perceptions) and on the outside look pretty well. Many people assume that ‘disabled’ means you have some physical deformity which is wrong when you look at various health criteria worldwide. Within these systems, there is also the possibility of a ‘disabled car parking permit’ (again a generic term as it might be called something different where you live).
On the subject of car parking, there are huge campaigns in UK about car parking charges for cancer patients. Many hospital car parks are on ‘private land’ and fees are levied. I’m not classed as disabled, I wouldn’t meet the criteria. However, I’m a frequent visitor to hospitals for tests/treatments and appointments. I’ve spent a considerable amount of money on hospital car parking in the last 7 years. The hospital I attend only provides free parking for cancer patients who are undergoing treatment (something I didn’t know for the first 4 years of my treatment). So if I’m attending for blood tests, scans or appointments, there is no entitlement for free parking. A couple of years ago, I met with my local hospital about car parking for cancer patients and was delighted to obtain a free pass when I explained the sheer number of visits I was making adding that it was probably for the rest of my life. I’m due to meet them soon to enquire about further plans to extend the current ‘treatment only’ benefit for cancer patients. If you google this issue, you will see plenty of comment! I guess these issues are pretty common worldwide with some countries faring better than others. That’s to be expected.
However, what is totally unexpected is this story which I will now lay out. It’s a reminder that you have no idea what’s going on in people’s lives.
Lexi Baskin is a cancer patient and was attending her hospital to have radiotherapy, and has a ‘tag’ for parking as she is prone to side effects as a result of her cancer. She was legally parked in a disabled parking slot and returning to her car in Oct 2017, she found it covered in stickers – see here:
I guess that made her very upset. It makes me upset just looking at these pictures from afar. Lexi posted her story on social media and on twitter, her tweet went viral and so far, has been liked over 100,000 times and she is heading for 50,000 retweets (shares). Great awareness for invisible illness and the issues of car parking and perceptions. It even made the press – see below:
So, to whoever committed this cruel act – SHAME ON YOU! – you are a selfish and terrible person.
You may also enjoy these similarly related articles:
I look well but you should see my insides – click here
Not every illness is visible – click here
You must be doing OK, you’ve not had Chemotherapy – click here
Not the stereotypical picture of sick – click here
An Ode to Invisible Illness – click here
Poker Face or Cancer Card – click here
Thanks for reading