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My Dad's got Stage 4 NSCLC, with brain metastases to the Brain


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Hi, my dad was diagnosed with Lung Cancer Stage 3b, which went to his lymph nodes. He had his treatment, and responded to treatment very well! In January just gone, dad had a CT scan as one of his check ups, and everything was going the way it should, the oncologist team were thrilled as the tumors were shrinking significantly! Last week Dad had a seizure, the previous week Dad complained about his arm feeling numb, we didn't think nothing of it! Dad went to hospital after his seizure and they had an idication that it was linked to his cancer. They put him through to have an MRI scan, and they said that Dad had 2 brain mets, so they restaged him at Stage 4 as the lung cancer had metastases to the brain. They sent the MRI results to Bristol to get a plan together and we met the oncologist team yesterday and there going to give Gamma knife radiosurgery, which I read about previously and it seems to be a very effective and positive treatment. We hope there going to get dad in sooner rather than later, they did say to dad, untreated he'd have around 3 month and treated they'd like to think he's got 6 months to a year plus. I just wondered if there's any success stories on this forum, who's received/receiving the same treatment as dad.

My dad's been on the Lugevity forum since 30th August not long after his first diagnosis. Its helped him through this very difficult and challenging time, his name is justin1970, so alot of the forum knows his story already. 

Thank you for all your support and for the support that youll still give us all.

Many thanks Cody 

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Justin,

You asked have others had brain mets and successfully treated them.  I can't name every person, but one of our senior folks here (Tom Galli) talks about this topic in general to another person awaiting treatment.  It can be found here.  Look at Tom's post.  Perhaps he can post here as well, but there are a number of folks who had them, got them treated via radiation and are still here to share their story.

 

Lou

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3 hours ago, Cody foote said:

That's alright dad xx I'll always love and support you xx we couldn't do this without you xx your very special to me xx your the best dad anyone could ever ask for xx love you with all my heart xxxxxx 

Yeah me too Code, xxx he’s a very special son with a lot more living to do xxx I love him so much too xxxx we’re in this together xxx

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Thanks lou it does help when people reply I know most of you are in the states and time differences are difficult but I really do appreciate everyone who bothers and understands how this is for everyone 

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Cancer is always scary but it's not a death sentence. As I mentioned to you Justin, doctors don't always get it right. I've seen miracles happen like with my elderly cat who was diagnosed with two brain tumours and given three months to live and he lived for over three years which is like fifteen human years and he was almost 20 when he died which is like 95 in human years! 

Also that awful McMillan nurse told me people who stage 3 lung cancer usually live six months and my mum is alive two years later and thriving! Doctors have told her she's incurable but her oncologist who is amazing and top in her field gave my my mum treatment with curative intent. When they thought the cancer came back, she had my mum signed up for every clinical trial she was suitable for! It shows that with the right doctor who believes in you, you can get a lot further. 

One of my mum's previous oncologists was so awful and had so little knowledge that he didn't even know anything about any current treatments and trials. He showed a lot of contempt for my mum's brilliant oncologist because she's a woman and is probably jealous because she's one of the rising stars in oncology and also works at one of the top cancer hospitals. 

There's unfortunately a lot of unprofessional doctors with zero table manners who dont care about patients. For them being a doctor is a social status thing not about the passion to help people.

Sorry for rambling but all I'm trying to highlight is that doctors are different and they aren't on the same wavelengths. 

One of my mum's friends was diagnosed with terminal cancer years ago. I remember meeting him and his family a few years back and he said he was terminal but he's still alive today!! That must have been 7 or 8 years ago! He was treated by the same brilliant oncologist that my my has and he had three different primary cancers in his life! 

Fear of death is normal but choose life and be your own advocate. Knowledge is power. I know a woman whose mum has cancer but she knows very little about her mum's type of cancer and doesn't know much about the latest treatments. I kept telling her to find out about immunotherapy and get a second opinion, but she wasn't very proactive. Sometimes you've got to be pushy. My mum is a very pushy person and if she's not happy about something she will make a fuss. She had two useless oncologists before she got her current brilliant oncologist! 

I'm sending you all lots of strength and positive vibes xxx

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Thank you for your reply, reading the success stories is and has been a massive help during this tough time, it just shows that anythings possible! And having the right team to back you goes a long way! I'm glad your mum's doing well! Many thanks and best wishes. 

Cody x

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Thank you I know I have to try and stay strong it's just really hard at the moment to focus on much, I can't change the team yet as they want me to have gamma knife ASAP and changing oncologists will put a hold on the starting of treatment which should be in Bristol, I have told them I felt a bit like a burden to them and that they were very blunt to me when giving prognosis and everyone of them were telling me different outcomes it becomes really confusing and hard to take in I hope I manage to start getting my head around it all, thank you so much for your support it really does help and mean a lot x

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Cody,

Welcome here.

i suggest you use the power of this forum by typing brain mets into the search window and seeing 15,302 results. Here is my search on the topic for reference. Yours will likely be different because we record up to the second.

CyberKnife, a close relative of GammaKnife, saved my life. If it worked for me, it can work for your dad!

Stay the course.

Tom

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Hi, yeah we've used this forum, for all of the success stories, there are so many! Yes I've read that cyber knife Is a close relative to Gamma knife. It seems very promising Tom, I'm glad that it worked for you and that you've got NED. Thank you for your reply. Best wishes.

Cody 

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1 hour ago, Justin1970 said:

Thank you I know I have to try and stay strong it's just really hard at the moment to focus on much, I can't change the team yet as they want me to have gamma knife ASAP and changing oncologists will put a hold on the starting of treatment which should be in Bristol, I have told them I felt a bit like a burden to them and that they were very blunt to me when giving prognosis and everyone of them were telling me different outcomes it becomes really confusing and hard to take in I hope I manage to start getting my head around it all, thank you so much for your support it really does help and mean a lot x

I absolutely agree that you should focus on the treatment first and then think about changing doctors after. I would stick with the more positive doctor who gave you a better prognosis.

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1 hour ago, Cody foote said:

Thank you for your reply, reading the success stories is and has been a massive help during this tough time, it just shows that anythings possible! And having the right team to back you goes a long way! I'm glad your mum's doing well! Many thanks and best wishes. 

Cody x

I absolutely agree; the success stories are what give me strength. Every person is different and their body reacts differently. I think unfortunately in the UK cancer treatment is more behind than in the US. I'm lucky that my mum is under a top hospital that specialises in cancer. There are some very good cancer hospitals in the UK. My mum is under Royal Marsden. It's based in London though but I'm sure that there are other good cancer centres around the UK though.

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https://www.trendrr.net/8000/best-hospitals-uk-london-largest-famous-private/

Here is a link to some good hospitals in the UK. I saw Bristol, the hospital that you're being treated at, on the list but I'm not sure if they specialise specifically in cancer.

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Apologies - I don’t mean to start an argument over this, but many people come on this forum frightened and confused (incl from the UK), so I felt like I need to share my view.

I haven’t seen any evidence that the UK is behind the US on cancer care if you are being treated at one of the major hubs. Just as anywhere you can be unfortunate to get a not-great doctor, but in the major hubs, care is state-of-the art and excellent. More rural centres may not be as good, but patient are often referred to the big hubs for more complex treatment, such as stereotactic radiation. That is the same everywhere - many folks on here travel considerable distances for their treatments as well.  I am in a number of UK and international groups, and I don’t get the impression that cancer patients is getting lesser care in the UK.
 

As for the list, it seems odd that it doesn’t include UCLH which has one of the largest, most advanced cancer centres and research programmes in the world (according to numerous international researchers I have spoken to), but maybe it is outdated as the centre is only 10 years old.

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I'm hoping the Bristol hospital is a good one it does seem to be the best in my area with state of the art equipment, I was wondering how many times you have to have gamma knife radiosurgery if you go every day like radiotherapy or if I have to stay in hospital while doing the treatment, I have another ct scan on Wednesday to see what the lung cancer is doing or if there is any more spreading to other areas nervous is an understatement,  my family have been fantastic and so supportive I don't know how they are coping with it to be honest I feel like a wreck but they are holding me up, I dont think I believe in myself enough even reading the survivors stories are hard to believe but there must be hope thankyou all for listening 

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I believe gamma knife is an outpatient procedure which you have 1-5 times. It’s the same type that I had to the adrenal gland. The actual treatment feels no different than conventional. Biggest difference is that they have to fit you into a molded head cage which they will make prior to treatment (you may have seen them during your previous radiation). Crossing my fingers for you - such rotten luck!

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Thanks rikke hopefully get some good news from all this I hope the treatment isn't to many times as its a bit of a trek to the hospital but hopefully worth it in the end , I just hope there's no other spreading through my body I know I haven't been given a time span but it does make it feel like you won't get through it

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Justin,

  I was diagnosed in March of 2015 and it was all because of a brain met and the sudden neurological changes it caused.  I never had ANY signs of warnings of Lung Cancer.  For me it all started with a "vertigo-like" feeling or maybe a sinus thing -- my head felt 'stuffy and off" == I saw my PCP after a day or so and by then was having some tingling in my arm and felt that I can not clearly process my thoughts into words.   He did a neuro eval and I knew right away I had failed it.  He sent me directly to the hospital for an urgent head CT Scan and that's when I learned I had a brain tumor and severe edema in my brain.  I was transferred to a larger sister hospital and spend the next week in a Neuro unit and underwent all kinds of tests and that week I learned I have Stage IV Lung Cancer that head spread to my brain.   That was back in March of 2015 and today I'm close to being a 7 year survivor thanks to my treaments.

My very first treatment was "Stereotactic Radiation (aka Cyberknife) to my brain - a one time highly precise dose of radiation pinpointed specifically to the tumor. I had excellent results and no side effects.  My follow up MRI later in August showed the tumor was almost fully resolved and it's now been clear ever since.

I then started standard of care chemo which was all they had at that time (outside of trails) and did well for some time.  By the Fall I had progression and moved on to Immunotherapy which by then had been FDA approved for NSCLC.  It was my life saver  - I was put on Opdivo second line and despite common side effects it work amazingly well.   Due to side effects I did have to stop in August of 2016, but I was Stable and doing well.    I have now been NED/Stable every since and have been OFF all treatment for over 5 years!

Please know the brain mets are quite common in Lung Cancer and also can be very effectively treated. I wish you the very best and hope you too will have excellent results.

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Hi Lisa, thank you for the message and for the positivity! I'm glad that you've been NED for 5 years, and your journey has been fantastically successful! These stories are definitely helping and giving us all hope and positivity! Many thanks and kind regards.

Cody x

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Thanks Lisa, that helps me too , I’m his mum and it’s been a living nightmare, so nice to hear some positive and heartwarming news x so very pleased for you and hope you continue to stay well xx regards Isla 

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Hi lisa thank you for the message it really means a lot, this has been a tough journey and this latest setback is really difficult to take in I'm so afraid of leaving my family it's tearing me apart, the great stories of the survivors are such a help and does give some hope, I wish I could stay off of the Internet and stop looking at all the survival rates that say 3 to 6 months I hope I can get my head around everything and start getting some strength from somewhere, I'm so glad you are well and living life as you should and again thank you so much for your message 

Take care 

Justin x

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