Effing cancer is an effing effer, frankly
Discussion
Update time, today marks a day I never thought I would see, I was given a 16 month prognosis 24 months ago, so set about making plans for my daughters 21st Birthday celebrations, well here I am well enough to be able to enjoy them.
Even more significant is that WE FINALLY HAVE OUR VERY OWN STUDY!!!!! In the later part of 2020 MD Anderson will start enrolling patients, this is the first time in the world for women with high grade neuroendocrine carcinomas of the cervix.
The study will combine niraparib (PARP inhibitor) with TSR-042 (immunotherapy). This is the culmination of a lot of hard work, campaigning and advocacy from all the ladies both past and present.
There is still a way to go as they need to get approval of the protocol and negotiate a budget with the company.
I’ve always maintained that what isn’t possible today maybe possible tomorrow, we are such a small group (fortunately) that we don’t usually make the numbers to run a study, so this is more than I hoped for.
In addition they have found many of us carry some mutations which respond well to other drug therapies.
Here in the U.K. Genomics are expanding their study to include neuroendocrine carcinoma, so hoping my oncologist will approve me for testing.
I’m still managing to work full time, tiredness is a problem as is the damage to my spine and hip, I’ve shrunk by four inches. The Lymphedema in the right leg is fairly pronounced, I’ve developed a tremor in my right side and have some significant memory problems, mainly short term but I’ve lost some of my facial recognition software and some of my favourite memories have gone, which I find sad. Other than that I’m tickety boo 😁
Even more significant is that WE FINALLY HAVE OUR VERY OWN STUDY!!!!! In the later part of 2020 MD Anderson will start enrolling patients, this is the first time in the world for women with high grade neuroendocrine carcinomas of the cervix.
The study will combine niraparib (PARP inhibitor) with TSR-042 (immunotherapy). This is the culmination of a lot of hard work, campaigning and advocacy from all the ladies both past and present.
There is still a way to go as they need to get approval of the protocol and negotiate a budget with the company.
I’ve always maintained that what isn’t possible today maybe possible tomorrow, we are such a small group (fortunately) that we don’t usually make the numbers to run a study, so this is more than I hoped for.
In addition they have found many of us carry some mutations which respond well to other drug therapies.
Here in the U.K. Genomics are expanding their study to include neuroendocrine carcinoma, so hoping my oncologist will approve me for testing.
I’m still managing to work full time, tiredness is a problem as is the damage to my spine and hip, I’ve shrunk by four inches. The Lymphedema in the right leg is fairly pronounced, I’ve developed a tremor in my right side and have some significant memory problems, mainly short term but I’ve lost some of my facial recognition software and some of my favourite memories have gone, which I find sad. Other than that I’m tickety boo 😁
k cancer.
Well some positive news for the thread ive not posted previously but my father in law was diagnosed with stomach cancer in January. He was very very lucky in that the disease had not penetrated too far so underwent chemo and an op. He's had 2 rounds of 4 post op mop up chemo sessions and has been told he can stop (most people are too ill to take the mop up)
He's done really well. We just need to fatten him up now but we still have him here which is the main thing. As is seemingly always the way this %#$%^ of a disease tried to take one of the best people you could ever meet. At the moment it 1-0 to us so long may that continue.
He's done really well. We just need to fatten him up now but we still have him here which is the main thing. As is seemingly always the way this %#$%^ of a disease tried to take one of the best people you could ever meet. At the moment it 1-0 to us so long may that continue.
So after my wife, mum, and sister in law all being diagnosed with breast cancer over the last 5 years and so far beating it, my dad has now being diagnosed with prostate cancer.
Good news is that it sounds like it's been caught early enough but still a little too early to tell how bad it may be.
Also it's made me realise he is actually mortal and won't be around forever so I will try spend some quality time with him over the coming years.
Good news is that it sounds like it's been caught early enough but still a little too early to tell how bad it may be.
Also it's made me realise he is actually mortal and won't be around forever so I will try spend some quality time with him over the coming years.
Killer2005 said:
So after my wife, mum, and sister in law all being diagnosed with breast cancer over the last 5 years and so far beating it, my dad has now being diagnosed with prostate cancer.
Good news is that it sounds like it's been caught early enough but still a little too early to tell how bad it may be.
Also it's made me realise he is actually mortal and won't be around forever so I will try spend some quality time with him over the coming years.
My God K! Your family have really copped some back luck! I can only wish you all the very best of luck. You are, of course, right to do what you can to enjoy your Dad's company as much as you can.Good news is that it sounds like it's been caught early enough but still a little too early to tell how bad it may be.
Also it's made me realise he is actually mortal and won't be around forever so I will try spend some quality time with him over the coming years.
Thanks all, my youngest daughter is taking part in the race for life today.
The photos show what a difference Cancer Research makes. Her words “ Life gave my mum a thousand reasons to cry and yet she still shows life a thousand reasons to smile” says it better than I can myself.
It’s all about hope.
The photos show what a difference Cancer Research makes. Her words “ Life gave my mum a thousand reasons to cry and yet she still shows life a thousand reasons to smile” says it better than I can myself.
It’s all about hope.
I, like most people I assume, never thought I'd be contributing to this thread.
My dad was diagnosed with oesophageal cancer about 8 weeks ago. Due to a previous triple heart bypass and subsequent heart attacks he isn't able to have chemo, and so goes in for an oesophagectomy on Sunday. After he'd decided to go for the surgery rather than palliative care, the surgeon told him that he'd have given my dad a maximum of a year with palliative care, so we're all firmly of the mind that the operation is worth it, no matter how risky.
I am very fortunate that my parents are both pragmatic and we tend to just get on with things as a family. There have been open conversations, plenty of laughs, no visible sadness, and an overall positive attitude. That being said, Sunday will be a tense day as we're under no illusions about the fact he could go while on the table.
I flew back from holiday early and spent the day at Donington with him today and it's been a lovely couple of days. The same again tomorrow and then we'll deal with whatever Sunday and subsequent days throws at us.
My dad was diagnosed with oesophageal cancer about 8 weeks ago. Due to a previous triple heart bypass and subsequent heart attacks he isn't able to have chemo, and so goes in for an oesophagectomy on Sunday. After he'd decided to go for the surgery rather than palliative care, the surgeon told him that he'd have given my dad a maximum of a year with palliative care, so we're all firmly of the mind that the operation is worth it, no matter how risky.
I am very fortunate that my parents are both pragmatic and we tend to just get on with things as a family. There have been open conversations, plenty of laughs, no visible sadness, and an overall positive attitude. That being said, Sunday will be a tense day as we're under no illusions about the fact he could go while on the table.
I flew back from holiday early and spent the day at Donington with him today and it's been a lovely couple of days. The same again tomorrow and then we'll deal with whatever Sunday and subsequent days throws at us.
PostHeads123 said:
A question I have is why after cancer treatment in the post treatment scans why don't they scan the head? My dad originally had lung cancer was treated for that given the all clear after that he was given full body scans what we didn't know at the time was that didn't include the head, apparently not scanning head is standard procedure. His lung cancer metastases to the brain, first we knew of it was he crashed his car, that same week he had a scan earlier and given all clear, only after the crash did they scan the head though and extent of the metastases was found he had no chance by then. Lung cancer is well known to metastase to brain if it been caught earlier he might have had a chance.
Radiation dose (in CT anyway) and accountability.Edited by PostHeads123 on Thursday 6th June 11:42
Head scans are not good at picking up very small mets that are not causing any symptoms. The concern is you have a scan that is reported as normal, then three months later, you start having neuro symptoms, so have another scan, which then shows metastatic disease in the brain. Then, with the benefit of hindsight, it may be possible to back to the original scan and see where those tumours originated, and then you get into a right mess as far as accountability goes.
Is it right to point the finger at a radiologist for not identifying these sub-mm lesions as brain mets? They could be any number of things, including artefacts on the images, so there may not even be anything there. So what's the answer? Either not do the scan, or scan everybody all the time, and over-diagnose brain lesions, causing extra panic, and put people through aggressive treatments which may not be necessary.
There is a limit to what imaging can do as while it may identify the presence of *something*, unless it is sufficiently large to see how it interacts with surrounding tissues and its enhancement pattern after contrast, it can't replace a biopsy and tell you exactly what it is.
My girlfriend took her mother to A+E yesterday after complaining of stomach / abdomen pains, now she has been in & out of the Dr’s over the last few months with this, blood tests etc but no real cause.
Unfortunately after going in last night she has spent 7 hours in surgery today having her ovaries and part of her bowel removed, my girlfriend told me that the surgeon had said it was Stage 4 and I am assuming that’s the case as I think the cancer has spread between the two or it might be bowel cancer and she also had an issue with her ovaries, not too clear at the moment.
Obviously we are gutted, she is one of the nicest ladies you could get meet and I’m so sad for my girlfriend’s grandparents her lost their other daughter / her auntie to breast cancer around 12 years ago.
This lady has been like a second mum to me over the past 7 years, never do enough for me or us, I’m just hoping they’ve caught it early enough (though it doesn’t sound like it).
Biopsies are out for testing at the mo’, so should know a path forward within the next week or so.
She is only 58.
Unfortunately after going in last night she has spent 7 hours in surgery today having her ovaries and part of her bowel removed, my girlfriend told me that the surgeon had said it was Stage 4 and I am assuming that’s the case as I think the cancer has spread between the two or it might be bowel cancer and she also had an issue with her ovaries, not too clear at the moment.
Obviously we are gutted, she is one of the nicest ladies you could get meet and I’m so sad for my girlfriend’s grandparents her lost their other daughter / her auntie to breast cancer around 12 years ago.
This lady has been like a second mum to me over the past 7 years, never do enough for me or us, I’m just hoping they’ve caught it early enough (though it doesn’t sound like it).
Biopsies are out for testing at the mo’, so should know a path forward within the next week or so.
She is only 58.
How many times do you hear about people going to the Dr over and over with a problem that then turns out to be cancer - I probably knew at least 5 people who had cancer which was caught very late.
I presume this will never be solved because the NHS cannot afford rigorous testing at an early stage for every incident.
I presume this will never be solved because the NHS cannot afford rigorous testing at an early stage for every incident.
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