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catlady91 reacted to LouT in Mri scan
Izzy,
This is sad news indeed. Justin was/is often on my mind and my thoughts of him are those of a brave person who faced this disease with courage and determination while simultaneously helping others along their own journey. There are special places in heaven for people like him and I believe he now occupies one. My thoughts and prayers are now turned over to you and your whole family. He will be missed.
Lou
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catlady91 reacted to Izzy in Mri scan
Hi everyone, it's with great sadness that I have to tell you Jus passed away this morning, we are all completely heartbroken, he fought so hard to beat this evil disease to no avail, thank you all for the support you've given him and me over the last 21 months and I hope you all continue to fight on and beat this devastating disease, he would be saying the same thing to you all don't ever give up , much love and thanks again xxx Izzy (and Jus) xxx
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catlady91 reacted to Izzy in Mri scan
Hi again, no jus is at home but in a hospital bed, he can't do anything much for himself as he's confined to bed. I gave him your messages and he said it was ok for me to talk to you all, he's really quite poorly and we are all struggling, but he's still with us thank god, I will keep you updated lots of love Izzy and Jus xxx
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catlady91 reacted to RJN in Mri scan
Hi Justin,
I hope you are doing ok. I think this is definitely the right time to seek a a second opinion. It certainly cannot hurt. I looked up how to go about this under the NHS, and seems you need to get either your GP or current consultant to refer you. Perhaps @catlady91 can advise? Re medical trials, I spoke to the research team ant UCLH and they don’t currently have any relevant trials, as all of them will exclude recent brain metastises, so I wouldn’t waste precious time on this. However, even in the short span since we were diagnosed, there have been so many new treatments approved, so another oncologist might have more ideas on how to proceed.
We are all with you!
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catlady91 got a reaction from Izzy in Mri scan
I completely agree with LilyMir. It's good to think outside the box and get a different opinion. My mum had two awful oncologists before her current one who is fantastic. One was inexperienced and slagged off my mum's current oncologist who is a very experienced senior doctor who also works in a very prestigious hospital and the other was so rude, negative and unknowledgeable and also slagged off my mum's current oncologist. It was definitely jealousy as the awful oncologists were both men and I think they felt intimidated by and jealous of my mum's oncologist who is a woman and is very well known and revered in her field and has an extremely good reputation.
Some doctors really don't care about their patients and for them it's all about status and money. My mum's lovely oncologist actually cares about my mum and when we thought that the cancer returned (luckily it didn't and was inflammation from immunotherapy), she did everything that she could to get my mum onto clinical trials. The other awful oncologist didn't have a clue about any clinical trials when my mum asked him. Luckily my mum didn't need any clinical trials or treatment as she was NED all along and what they thought the "cancerous activity" was inflammation.
My point is that it's important to find a doctor that you gel with and who will do anything to fight your corner. A lot of success stories come as a result of doctors not giving up on their patients. There were people who were told that they were terminal by one doctor and so they went to see a different doctor who said that they would do anything to help them and thanks to that doctor not giving up on them, they surpassed the initial grim prognosis.
It's also worth having a look abroad as LilyMir says maybe in France or Germany. It can be expensive to fund but crowd funding can really help. We would even be happy to help set up a fundraiser on here if necessary.
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catlady91 got a reaction from Justin1970 in Mri scan
I completely agree with LilyMir. It's good to think outside the box and get a different opinion. My mum had two awful oncologists before her current one who is fantastic. One was inexperienced and slagged off my mum's current oncologist who is a very experienced senior doctor who also works in a very prestigious hospital and the other was so rude, negative and unknowledgeable and also slagged off my mum's current oncologist. It was definitely jealousy as the awful oncologists were both men and I think they felt intimidated by and jealous of my mum's oncologist who is a woman and is very well known and revered in her field and has an extremely good reputation.
Some doctors really don't care about their patients and for them it's all about status and money. My mum's lovely oncologist actually cares about my mum and when we thought that the cancer returned (luckily it didn't and was inflammation from immunotherapy), she did everything that she could to get my mum onto clinical trials. The other awful oncologist didn't have a clue about any clinical trials when my mum asked him. Luckily my mum didn't need any clinical trials or treatment as she was NED all along and what they thought the "cancerous activity" was inflammation.
My point is that it's important to find a doctor that you gel with and who will do anything to fight your corner. A lot of success stories come as a result of doctors not giving up on their patients. There were people who were told that they were terminal by one doctor and so they went to see a different doctor who said that they would do anything to help them and thanks to that doctor not giving up on them, they surpassed the initial grim prognosis.
It's also worth having a look abroad as LilyMir says maybe in France or Germany. It can be expensive to fund but crowd funding can really help. We would even be happy to help set up a fundraiser on here if necessary.
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catlady91 got a reaction from Tom Galli in Mri scan
I completely agree with LilyMir. It's good to think outside the box and get a different opinion. My mum had two awful oncologists before her current one who is fantastic. One was inexperienced and slagged off my mum's current oncologist who is a very experienced senior doctor who also works in a very prestigious hospital and the other was so rude, negative and unknowledgeable and also slagged off my mum's current oncologist. It was definitely jealousy as the awful oncologists were both men and I think they felt intimidated by and jealous of my mum's oncologist who is a woman and is very well known and revered in her field and has an extremely good reputation.
Some doctors really don't care about their patients and for them it's all about status and money. My mum's lovely oncologist actually cares about my mum and when we thought that the cancer returned (luckily it didn't and was inflammation from immunotherapy), she did everything that she could to get my mum onto clinical trials. The other awful oncologist didn't have a clue about any clinical trials when my mum asked him. Luckily my mum didn't need any clinical trials or treatment as she was NED all along and what they thought the "cancerous activity" was inflammation.
My point is that it's important to find a doctor that you gel with and who will do anything to fight your corner. A lot of success stories come as a result of doctors not giving up on their patients. There were people who were told that they were terminal by one doctor and so they went to see a different doctor who said that they would do anything to help them and thanks to that doctor not giving up on them, they surpassed the initial grim prognosis.
It's also worth having a look abroad as LilyMir says maybe in France or Germany. It can be expensive to fund but crowd funding can really help. We would even be happy to help set up a fundraiser on here if necessary.
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catlady91 got a reaction from LouT in Mri scan
I completely agree with LilyMir. It's good to think outside the box and get a different opinion. My mum had two awful oncologists before her current one who is fantastic. One was inexperienced and slagged off my mum's current oncologist who is a very experienced senior doctor who also works in a very prestigious hospital and the other was so rude, negative and unknowledgeable and also slagged off my mum's current oncologist. It was definitely jealousy as the awful oncologists were both men and I think they felt intimidated by and jealous of my mum's oncologist who is a woman and is very well known and revered in her field and has an extremely good reputation.
Some doctors really don't care about their patients and for them it's all about status and money. My mum's lovely oncologist actually cares about my mum and when we thought that the cancer returned (luckily it didn't and was inflammation from immunotherapy), she did everything that she could to get my mum onto clinical trials. The other awful oncologist didn't have a clue about any clinical trials when my mum asked him. Luckily my mum didn't need any clinical trials or treatment as she was NED all along and what they thought the "cancerous activity" was inflammation.
My point is that it's important to find a doctor that you gel with and who will do anything to fight your corner. A lot of success stories come as a result of doctors not giving up on their patients. There were people who were told that they were terminal by one doctor and so they went to see a different doctor who said that they would do anything to help them and thanks to that doctor not giving up on them, they surpassed the initial grim prognosis.
It's also worth having a look abroad as LilyMir says maybe in France or Germany. It can be expensive to fund but crowd funding can really help. We would even be happy to help set up a fundraiser on here if necessary.
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catlady91 reacted to LilyMir in Mri scan
I am so sad Justin to hear about the negativity of your oncologists's assessment. Like @catlady91, I looked up your history and saw at least another occasion when you doctor gave a prognosis of 3-6 months... more than a year ago, so I would take such dire prognoses with a pinch of salt. Most importantly, I think a second or even a third opinion is in order. I would not rely on a single doctor/centre assessment when it comes to such crucial decisions about stopping treatment or giving up. Is there no possibility for other opinions in the UK/France?