Mri scan

[Izzy]

Jus !! Not a chance that your going anywhere I won't allow it, your tough and your a fighter, we will never give up, where there's life there's hope, your not down n out yet and your not gonna be, they get stuff wrong all the time and they have this time !! You'll see it's a rough patch but one we can come through, come on let's show em what we're made of and kick this cancer into outer space xx I love you so very very much and I'm not prepared to lose you any time soon xxx If others can do it so can we xxx Love you sweetheart always xxxxxxx Mum xxxxxxx

[LouT]

I'm with your Mom, Justin.

Lou

[Pstar]

You have been put thru the wringer Justin with this horrible disease. Your dr said “possibly” which is the defining word here…they don’t know. You are so strong and need to keep pushing thru. We are all pulling for you with many thoughts and prayers. Hang in there.

[Izzy]

Just a quick message to thank you all soo much for the love and support you are giving to Jus, he so needs it at the moment cause things are really tough for him, but he's a fighter as we all are too and we're not about to let him go, so thanks again it means the world to him as it does to me, it's tough being a mum and seeing you child in so much pain but I'm tough too so this cancers got a fight on its hands, thanks again and lots of love and strength back to you all xx Isla xxx 

[LouT]

Izzy,

Justin is part of our family and when one of us suffers we all feel it.  Our prayers go out for him, but also for you and the rest of his family.

Lou

[Izzy]

Thanks Lou, means a lot to all of us xx

[BridgetO]

hey Justin, Pay attention to your mum and hang in there!

[Justin1970]

I just can't get it out of my head it's probably only a matter of weeks, and I've read online with brain cancer you get really tired and sleep a lot, but I haven't slept well for approximately 12 weeks due to the fatigue so i don't know what to think, I don't feel like I'm dying and I've read that some people have lived a lot longer than expected 

[Izzy]

Well there's your answer Jus xx your not about to die, your knackered because your body has been through masses of trauma and you had a huge seizure which you were lucky to survive but you did !! Your body now needs to relax  that's how you repair,  you've not slept for such a long time you have a lot of catching up to do, you should stop googling everything cause you then only see the bad bits, once you gain some strength back you'll start to feel better but not with a negative attitude, you have to have the will to live, I know you've got it in you so let's see it,  I'm convinced you can do this so let's show em eh ! Xxxx love you so so much Jus xxxxx Mum xxxx 

[Karen_L]

Justin, 

Sounds like you've been reading Dr. Google again. Remember the mantra: Dr. Google is a quack. 

I think if you got in to some things you love, your mind wouldn't have space left to fill up with worry or fear.

If you're not fatigued, that's great! Maybe you could start some simple stretching or exercising to start to build your strength. Don't you have a care nurse who's checking in on you? Seems like she could make suggestions for some ways to start to build your stamina. A physical therapist, perhaps?  

I know the past weeks have given you a wicked case of emotional whiplash. But every minute you get to make a choice about how you want to proceed. Choose something you love and let it fill you up. Yes, even if's watching TV or a movie. 

Keep us posted,

Karen

[LilyMir]

Hi Justin, last night I abruptly woke up in absolute fright, my heart was thumping what felt like 1000 beats per second and for a moment I felt I could not breathe as my throat seemed stuck. I was in so much panic I was convinced I was dying and hugged my kid sleeping next to me as I was trying to whisper alert my husband. The panic took a few minutes but subsided and I was breathing normally again wondering what on earth just happened. You see, we all carry the terrible burden of LC, and the related heavy mental health complications, but none of us have any idea what will happen to us today, tomorrow, in X years. However,lots of times, the moment's fright ends and life resumes somehow. As hard as it can be, please try to focus on beating this cancer one more round. Do not think too much or too far into the future, just focus on here and now and spend as much happy times with your family. I still also think you should consider clinical trials if imaging shows that tumours are still growing. I would never accept an oncologist pontificating a terrible prognosis without her showing me exactly why and what else she can try. Seek a second or third opinion otherwise.  FIGHT, for you mom, wife, kids. Life is worth it for more time with them, even with cancer. Fingers and toes crossed for you Justin! We are all with you!

[RJN]

Hi Justin,

Can’t blame you for feeling anxious and out of sorts. Sounds to me like your medical team has left you in a weird limbo.

I think LilyMir has a point, and you/your family could try to ask about trials and/or contact for example the research team at UCLH to see if there is anything going? There are so many trials in progress, including a fair few for heavily treated LC patients. I have an appointment on Monday and could ask for you if you’d like?

Apart from that, hope you are getting through this rough time ok. Rikke

[Justin1970]

Hi rikke 

I have a telephone appointment tomorrow with the oncologist I will ask them the questions I have wrote a lot down , that would be brilliant if you could ask please,

[RJN]

Good luck with the call and let us know how it goes. Not all treatment centres are focused on research, so it can’t hurt to ask. I’ll keep you posted.
 

[Justin1970]

I had the telephone appointment today and the oncologist said I'm to ill to have anymore chemotherapy and clinical trials, they will keep me on the dexamethasone steroids to try and keep the swelling down but as it stands there's nothing else left to try 

[LouT]

Justin,

This is terrible news.  I don't really know what to say.  Did they at least indicate that the steroids might bring the swelling down for you?  Also, are they giving you anything you need to try and stay comfortable?  You're in my prayers, and I'd love to see this turn around.

Lou

[Izzy]

My sentiments exactly Lou and I still believe it can,  I'm not about to give up on you Jus not ever ! It is not the end of the line and this does not mean your going anywhere any time soon, it just means they can't do anything else but if you get to feeling  stronger things could change and you might then be able to have more chemo, never say never and don't let this latest hurdle make you give up, I'm not ever going to xxxxx love you sweetheart xxxx Mum xxxxxx 

[catlady91]

I'm really sorry to hear this Justin. Doctors are sometimes quick to give up. I read from your earlier posts that you have a KRAS mutation. I looked up more about it and there's this drug available for it. I'm not sure if it's available on the NHS but it's worth looking into.

https://www.onclive.com/view/adagrasib-provides-new-option-for-patients-with-kras-g12c-mutant-nsclc

[LilyMir]

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? 

[catlady91]

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.

[RJN]

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! 

[LilyMir]

@Justin1970 @Izzy Here is the info for contacting Gustav Roussy in Paris, doesn't hurt to ask them for possible consultation. This is a top rated cancer hospital at the world level, and so close to UK.  

https://www.gustaveroussy.fr/en/international-patients

[LilyMir]

On 3/31/2023 at 3:34 PM, catlady91 said:

I'm really sorry to hear this Justin. Doctors are sometimes quick to give up. I read from your earlier posts that you have a KRAS mutation. I looked up more about it and there's this drug available for it. I'm not sure if it's available on the NHS but it's worth looking into.

https://www.onclive.com/view/adagrasib-provides-new-option-for-patients-with-kras-g12c-mutant-nsclc

I addition to @catlady91's note above on Adagrasib, did you doctors use/consider Sotorasib?

https://www.sciencedirect.com/science/article/pii/S2666364322001527

[RJN]

Just to add to above, Adagrasib and Sotorasib are only indicated for KrasG12C under NICE and FDA guidelines. I seem to recall that Justin had a different subtype. (Only adding for info, there are some trial for other subtypes, but to my knowledge none approved yet). 

[LilyMir]

Good point @RJN, I was under the impression Justin had this type of KRAS but I guess I was mistaken. I wonder if in the worst of cases,  patients can ask for compassionate off-label drug use (when one no longer has anything to lose). Something to at least inquire about, maybe as part of a trial but even without...