Treatment postponed again

Has your husband got a lung nurse, she is the person he should be talking to, she is the go between for your husband and his oncologist, she is also there to give him the help and information he desperately needs. If your husband has been told to come back next week it’s sounds like a good option for him to get away with some friends even for a couple of days there's no point in him staying home torturing himself about who’s not doing what. He now needs to take things into hand and either contact the lung nurse and have a chat or take a few days away to clear his head because at the minute even if he gets treatment he’s not in the right frame of mind.

hope things turn around for you both

Hi Julie, thanks for reply. Peter is my husbands lung nurse & yesterday I sent a very lengthy message explaining everything. Peter is normally quite good at getting in touch & replying.

My husband as never been able to accept this diagnosis, he was given results in a brutal way a year ago, purely after a routine chest x ray for something else. 

I normally go with him to the Marsden, but I am currently bedbound ( spinal injury) but over the weeks I have asked questions when I have gone to Marsden. One oncologist is very lax with answers ie when I said, well if he cant cont with prem maintenance whats next, she just laughed mumbled & said nothing, he is stage 4 you know. I then requested a call with his proper onco, who said theres other options ( no idea what, as shes keen for him to stay on this prem) & just says this happens to lots of people.

So yesterdays call totally caught me off guard, my meds are knocking me out, I thought my husband had bloods done & seen onco due to time.

She seemed quite upbeat with excellent brain scan results, cyberknife he had last year he had an amazing response to. But never as he had seperate scan results, onco said its only 2 wks since scans & they av been chasing. I asked could she at least ring with results of CT & she said no, wants a face to face to discuss that & bloods. I asked if he was having more saline flush & she said no, to carry on with drinking litres & litres of water. Thats wen I went blank & she said to message if I think of anything else.

So I did think of things one being I cant see what difference a week will make re creatitine levels if only dropping from 133 to 120 in 16 days, what does she expect in a week, a miracle! And as soon as prems given ( if given) the kidney bloods will fly back up. I'm no onco, but it doesnt take a doctor to know that.

So I sent all the questions, but mostly my husbands had enough of this waiting game, its bad enough the scan wait, but put paused treatment on top, its torture & not fair on him or me.

I never used to think like him, but its making me agree with him, somethings not right.

He doesnt want to go away on his own & I cant go anywhere, not even for a blasted walk in the park, as I cant walk for longer than a minute or so.

We should have both been going away on 12th March but canx because of me, not hubby so put it back till 22nd March, hoping my treatment/physio works. Physically you wouldnt think anythings wrong with my husband, no cough, pain, loss of blood anywhere all the symptoms of lung cancer, he doesnt have.

But mentally I think hes given up, had enough as now said pointless going back let nature take its course. I cant let that happen. The Marsden team ( hes on a trials unit) know about his anxiety, they know he doesnt talk in clinic he blanks out never asks any questions. He cant watch a cancer advert on tv. So I dont understand why they are dragging this out or what it feels like.

If I was him, I would not have left the Marsden yesterday until I was given a plan b, as plan a as been on hold since Jan 6th ( only one prem maintenance given on 20th Jan).

So hopefully I'll get some answers today, but who knows & hubby wont talk, I'm in agony & supposed to be resting, but lifes one bloody confusing stressful mess at the minute.

Teresa x

 Tillyboo 

I know how frustrating this is for you, but they cannot discuss a plan b until plan a has been completed. It is not anyone’s fault that treatment has been put on hold, no one can predict blood results, but giving him treatment with his current blood levels would make him extremely ill. 

His medical team are right in saying this happens to lots of people. But he has to continue on this path before any other options can be looked at, as you know how things can change from one week to a next. I don’t think they will be right to say that he can have plan b if plan a fails, because then they would be letting him down if plan b cannot happen. 

On a brighter note I have a relative who has stage 4 incurable lung cancer, who’s chemo had to stop for similar reason, he was told he had 3 months to live, and 12 months later he’s just had another stable scan! So we never know what is going to happen. 

 Justme19 chellesimo 

Just to update. After I messaged Marsden yesterday,  recieved a message from onco. CT scan back absolutely amazing response to treatment.

Last Aug 2025 lung mass 71mm now 29mm, further shrinkage in hip which had already shrunk to 15mm on last scan & we knew brain scan was showing all clear. No new cancer anywhere in his body. He cried with relief & I am just so happy with results, no words. 

So its just hoping to cont treatment next week that bloods come back ok. But the scans have been the worry, because of the treatment pause. Now to relax, sleep & have this black cloud gone.

Thanks for replies, Teresa x

This is great news! I am supporting my husband who has stage 4 nsclc His immunotherapy treatment has been stopped temporarily due to a flare up in his joints and we are obviously extremely worries about this but understand why so your post resonated with me Lots of positive thoughts for you and your husband. I know how hard it is to be watching your loved one go through this and having your own health conditions. Please message if you need to talk/rant! X 

Is your hubby on keytruda? I just read a post about keytruda. My hubby was on that for 6 months last year. But it caused severe joint pain & several months after stopping he had a delayed reaction of colitis. Keytruda worked for the first 3 months as in shrunk lymph nodes & kept cancer stable, then 2nd scan the lung mass grew slightly, but because hes on a trial it was stopped. Also the side affects whilst he was on it along with joint pain, swelling in his feet/legs & just felt unwell mid cycle, he was on it every 6 wks & when it got to about 3 wks, he was in bed a lot, no appetite etc so it eas stopped in August & he had 2 week break & started chemo, Carboplatin/Premextred. He sailed though thev4 cycles, no sickness, no side effects & his last main cycle was Dec 12th 2025. After just 2 cycles his scan showed shrinkage & this scan showed further shrinkage. But when he was due to start premextred maintenance on Jan 6th hus creatitine ( kidney function) level jumped from 75 to 111, so treatment was paused & he had his first treatment Jan 20th, but since then paused again fue to creatitine spiking. Hes back next week again & hoping the levels low enough for treatment.

But I totally understand the fear in pausing of treatment, its terrifying, as you think no treatment things will spread. Its an awful place to be in & my husband as never come to terms with his diagnosis, its on his mind 24/7.

He was diagnosed in a brutal way all through a routine chest x ray. He wss told u have stage 4 cancer in lung its in ur brain spine & hip, given a bunch of leaflets & sent home. Hes never got over that. But his CTDNA blood test qualified him for the trials unit at the Marsden in Sutton.

So he had cyberknife radiotherapy to brain April 2025 & 1 session of radiotherapy to spine May 2025 & 5 sessions of radiotherapy to hip Oct 2025. He as never been symptomatic of lung cancer, no cough, no chest infections, no coughing of blood, he had slight hip pain, but put that down to age, hes 72.

We went on holiday to Fuerteventura Dec 2025 & due away next month back to Fuerte to see friends. His weights gone back to normal, appetite etc

But the ups & downs of this disease are cruel, yesterday was the worst I'd seen him for anxiety & fear, the mind plays tricks, he was convinced the onco knew more & was going to give bad news next week, I was even thinking the same. But it tricks you into thinking all sorts.

I know this is a lengthy reply, but to give you an idea of the ups & downs & thoughts & fears. 

I hope your husband restarts treatment soon. I have the Marsden app & my hubbys lung nurse Peter is amazing. I message him via the Marsden app & he spraks to doctor relays everything, question I forget to ask & how bad my husbands anxiety is. So your husband should have a lung nurse, speak to them about anything & everything.

Take care & hope all goes ok & keep in touch, Teresa x