Lung cancer that’s spread - how long it that piece of string??

[MaitlandGirl]

I know that no-one here can give a definitive answer but MIL isn’t asking the questions and the medics won’t tell us. She’s gatekeeping all info and is very selective on what she tells us.

FIL was diagnosed with stage 1 NSCLC in December. By the time they started treatment in March it had spread to his adrenal gland. He had 3 rounds of immunotherapy and it’s now spread to his liver, jaw, brain and somewhere else she can’t remember. I suspect bowel based on some of his symptoms.

He’s really unwell and is fading away in front of us. He’s been in hospital for 3 weeks now due to extreme weight loss (he’s lost over 1/2 his body weight and is less than 45kg) high calcium levels and now he’s got low potassium. They’re discharging him so he can start chemo.

i know that no-one really knows but if anyone has been in this situation how long did your loved one last once they got to this stage?

TIA

Sounds like he is stage 4, not stage 3. I am so sorry. It sounds like he is in quite bad shape. A lot depends on where or not he responds to chemo, but it sounds like months. I am not a physician, but lost 4 members to lung cancer in the last few years.

Thanks @Crankyaboutfood it’s so hard seeing him like this, he’s really struggled with the immunotherapy and has really only had a few good days since that started in March.

We’ve been trying to get MIL to ask the Drs but she won’t. She’s totally in denial about everything so we’ve got her to worry about as well as everything else.

I’m sorry to hear about your losses, life is so cruel and unfair.

Sounds like he's about to start palliative chemotherapy. This is where they use drugs to try to prolong life but it usually (not always) results in months rather than years. I get it's difficult to live with the uncertainty.

Less than six weeks. Both parents, 23 years apart. Both misdiagnosed. My Dad was told that his illness was all in his mind, until they finally did a blood test at my mother’s pleading. His calcium levels were so high they sent an ambulance to admit him to hospital. My Mum was also in denial. When it was her turn, it was during Covid. She couldn’t get a face to face appointment with her GP and was repeatedly told that the pain in her chest was a pulled muscle (for two years). She had a fall, was admitted to hospital, and then diagnosed with metastatic lung cancer. She gave up at that point and deteriorated rapidly.

Sorry to hear this. As someone else said , this is palliative chemotherapy to try and give him more time. I am surprised that they are offering chemotherapy given how unwell / frail he is and the likelihood is that he will try and not tolerate it . Sadly I think he will deteriorate rapidly and it will be a couple of months or less.

Following this as I have a family member in a very similar position. I'm sorry OP

My dad, in an almost identical situation, refused the chemo. He died 10 days after the diagnosis.

Just for clarity - the hospital said between 4-6 months. His final deterioration was a very quick shock.

When a relative was on hospice care I had a chat with a nurse about this. She said that whilst it is of course impossible to give accurate timescales, which is why doctors don't, she offered this. As a rule of thumb if a person is deteriorating over months they probably have months, weeks, weeks and days, days. I have found it fairly accurate with people I have known.

Sorry you're going through this and your MIL is probably not asking the right questions as she may not want to know the answers.

It really is how long is a piece of string as everyone reacts differently to cancer. My MIL 'lasted' months when her lung cancer metastasised to her bones but the doctors up until the day she died refused to give a timeframe. Her symptoms were very similar to your FIL.

Trigger warning below:

I don't think theres that much time left for the FIL if it's spread to the liver and brain sadly as these are faster acting cancers.

Have you discussed stopping treatment and letting him die instead of prolonging the inevitable with chemo? All the chemo will do is make him live longer but he will be so ill it may just be best to let him go instead of prolonging the pain.

I know that the above sounds super heartless but we had this discussion and it was quite cathartic to get it all out in the open and get everyone's views. We decided as a family to not carry on treatment due to MIL being so ill on chemo when she was first diagnosed. Looking back it was the right thing for us.

That sounds like a pretty rapid deterioration. From your description my mum was in her final weeks when she was that frail. She started palliative chemo and was gone within a week. It was a different type of cancer but the aggressive progression sounds similar. Best wishes for you and your family for what's to come.

My Mum had Bowel Cancer that had spread to her liver.

Her BC was in the abdomen wall so she couldn't have surgery to remove.

Her liver had innumerable tumours so she couldn't have treatment where the liver regrows. Had there been only a few in the same area then they mentioned the possibility of surgery.

She was offered palliative chemo on 10th May but only if she got stronger. She was thinking about it and had just decided not to have any when she suddenly went downhill over a two day period. She died on 22nd May 2022.

From the speed at the end and her significant jaundiced colour, I think it was her liver that caused the speed at the end.

This situation may well have been different if her liver had been treatable. So it is very much a personal thing.

OP@MaitlandGirl with liver mets in NSCLC I wouldn’t be expecting more than a very few months, particularly with that degree of cachexia ( NSCLC only very rarely metastasizes to the bowel so it’s that’s less likely). However for those with loved ones following this thread, immunotherapy and targeted therapies are making a real positive impact and extending lives longer than previously…. some people will always take any treatment that gives them a little longer. Whether or not he continues with palliative chemo I would encourage your family to seek hospice input if you haven’t had any to date, there’s so much they can help with in terms of supporting your FIL and MIL.

It doesn't sound like FIL is strong enough to tolerate chemotherapy tbh

Is he still able to advocate for himself or is he reliant on MIL to make decisions in his best interests?

I don't understand your post. Is this what your MIL chose? you make it sound like you all got together and chose for her

I wish someone could tell us. My husband has breast cancer which metastasised to his spine and other bones. He now has brain mets and has deteriorated a lot over the past month. He’s classed as looking anorexic now and doesn’t eat much, but eats a little. He too has been started on a chemo drug today, but I wonder why as all it will do is prolong his agony, and maybe give him horrid side effects in the meantime. He’s not “living” and I do wonder why the docs haven’t said enough now. He goes from wanting to die asap to wanting to try the drug. It’s heartbreaking.

@notnowmarmaduke she had the overriding decision obviously but she wanted everyones views and then we sat down and discussed when her mind had been made.

So sorry that you're going through this. My mom had lung cancer which metastasised to her bones and liver. She died 5 weeks and 6 days after diagnosis.

Don't blame your MIL, from personal experience, it's really difficult to get an honest answer/perspective from a doctor. They all seem to err on the side of 'super-positive, we can deal with this' when sometimes the reality is 'this is terminal, we shouldn't try and prolong this painful life'.

I agree with this. Quality over quantity.

Thanks everyone for your thoughts and responses.

We’re in Australia so the procedures and options available are a little different (no Macmillan nurses for one thing!). We’re all shocked by the speed of spread and unfortunately he didn’t have a good response to immunotherapy at all. It’s been downhill since he started and he’s spent more time in hospital that out since his first treatment.

Having spoken to the Drs last night it’s his spleen it’s spread to, not his bowel and the 18 days of gastro upset are down to the potassium drip he’s on.

We’re all exhausted so I’ve no idea how he feels. He hasn’t been ‘well’ for so long and it seems so cruel to keep him going. You can’t do it to a dog so why is it ok for a human?

He wasn’t well for enough for discharge last night, to be honest we don’t think he ever will be so he’s not starting his chemo today. He’s sleeping almost all day, doesn’t eat, is doubly incontinent and bedridden on the HDU yet the Drs wanted to send him home. There is hospice care locally he could go to but we need MIL on board for that.

Hopefully we’ll know more today when the results of his yesterdays MRI comes in and after my wife has been in to see him.

Thanks again everyone and I’m so sorry that you’ve all been through this, it’s just so damn unfair.

Just wanted to come back and give an update.

FIL has had a good few days after an iron infusion and 2 units of blood and we started to get a bit hopeful that he’d be ok to have chemo.

Unfortunately the specialist has said chemo is a no go and advised we’re looking at weeks rather than months. To be honest that’s more than we thought a couple of weeks ago but who knows what the quality of those few weeks will be. MIL is still determined not to send FIL to a hospice but she’s not well herself and we don’t know how she’ll manage physically as his needs grow.

It’s going to be a hard few weeks for everyone.

So sorry. It's an incredibly difficult time. Sending strength as you navigate through these next few days and weeks. Thank you for updating us.

My wonderful FIL passed away an hour ago :( he was admitted into the local hospice 3 weeks ago (4 days after being given 2-3mths) as he deteriorated very quickly.

we’ve spent the past few weeks planning his funeral and adjusting to the thought of him not being here anymore but I’m sure once the sun is up in a few hours it will all become very real - for now it’s a stated fact, but soon it’ll become real and heartbreaking.

He was a good man who will be missed by so many.

So sorry to hear this ❤️