Palliative Care

[Brianderrick12]

Hi - me again - Just so confused and looking for something positive to cling to. We’ve had a call from the hospital that my brother is being referred for palliative care ? Does this mean the end for him ? He’s been on maintenance Nintendanub for 4/5 months and seemed to be doing well - I could speak to him - his coughing and breathing seemed to be vastly improved. His scan showed progression so they took him off treatment- in the 2 weeks he’s been off it the deterioration is awful - can’t speak can’t breathe etc. Then we get a call from the hospital- that word frightens me to death - we’ve gone from stable disease to palliative in rapid fire time - I feel sick . Sorry for the vent xxxx

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Brianderrick12

Sorry to hear about your brother, as you know, treatment is stopped if the check scan shows progression, which can happen quickly. Palliative means a life limiting illness, and any care directed will be to address any troublesome symptoms, this can either be at home, in the hospital or a hospice. Palliative does not automatically mean end of life care, but it may be helpful to have a face to face discussion with the ward staff or oncologist in regards to your brothers deterioration and perhaps ask what to expect in the days and weeks ahead, and what care is available for him at home etc. It may be worth asking if the change in is health is to do with the cancer or anything else.

This is understandably a distressing and stressful time for you all and you are welcome to contact our ask the nurse team on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email us at [e-mail]

Kind regards

Ask the nurse support team

The Roy Castle Lung Cancer Foundation

[Brianderrick12 in reply to RoyCastleHelpline]

Thankyou - he’s having a round of GemCarbo then a scan - the phone call for palliative care was unexpected and we’re panicking x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to Brianderrick12]

Palliative treatment can mean, although not a cure, they can treat and hopefully improve the symptoms. It may be this chemotherapy can help with this and make him feel better. I can appreciate the word palliative can be frightening and you think it is the end, but not necessarily so. If your brother was at end of life, then there would be no treatment given and they would possibly say that he is at end of life, so hopefully a bit more encouraging that they are giving him some treatment.

Kind regards

Ask the nurse support team

[Brianderrick12 in reply to RoyCastleHelpline]

That’s so helpful thankyou- it’s his cough and hopefully it will help with that - we maybe need to calm down - it’s hard - he’s vulnerable with mental health issues - Thanks again x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

That is challenging for you all, it always helps when you have the accurate information and hopefully you have some clear explanation of what is going from the ward staff. Sometimes, we are unable to get past certain words and hear nothing else that was said, especially when you did not expect to get a phone call that included palliative care.

I hope his symptoms improve and may help his mental health also.

Take care

Ask the nurse support team

[JanetteR57]

sorry to hear of your brother's situation and unexpected call re palliative care.

There is a lot of confusion about the word palliative and medics often bandy it around. Many many LC patients are on palliative treatments which mean the intention is to relieve the symptoms rather than a curative intent. The majority of LC patients in the Uk are detected too late (currently) for curative intent treatment but that doesn't mean the end is imminent. I've been involved in LC research for years and so many I have known and know have responded to different treatments including those that aim to relieve symptoms.

Palliative care likewise doesn't mean imminent end - but hospices and palliative specialists often have far more time and expertise to help the patient/relatives about pain management, eating well (to reduce muscle wastage etc), better sleeping etc and often have more time available with the patient than some regular health services.

hope you get some answers to your concerns soon. sending you strength to help support your brother and family. good luck to you all.

[Brianderrick12 in reply to JanetteR57]

Thankyou so much - trying so hard not to panic - it’s moving quickly like stuff is being put in place - he has a home visit on Monday & that’s never happened before - my sister will be with him - he’s eating well but he’s lost weight - his breathing and coughing definitely needs help - just praying this next round of treatment stabilizes things for a while . Thankyou xx

[JanetteR57]

fingers and everything else crossed for you all. It's quite common to lose weight but good that he's eating well. This link to Roy Castle website about eating well may help you support him further. good luck. roycastle.org/about-lung-ca...

[Glitterpink_18]

I'm not sure how old your brother is. My sister passed away last year at 78 after being treated for lung cancer for 6 years. I was 10 yrs younger. Her treatment was stopped a couple of times because she was getting weaker. I would ask the dr her prognosis and he would just say she had already outlived their expectations. She was on immunotherapy the last year or so. She weighed 117 lbs when her treatment started and she was 74 lbs when she died. Cancer is so horrific. It's terribly hard on the family. Some of the other family members seemed to think she wasn't getting the best care, but I think the drs did all that they could. Even now I wonder if I was the best caregiver for her and if I could have been a better advocate. I honestly think it was her time, just not ours. My sister also was a heavy smoker and had COPD but had no interest in quitting after the cancer diagnosis. It was a difficult situation.I pray for peace and comfort for your brother and your family.

Connie from Stockbridge, Michigan, USA

[Brianderrick12 in reply to Glitterpink_18]

Connie I’m so sorry - it’s so unbelievably hard - my brother is 64 - also a heavy smoker - roll ups - also COPD - he managed to give up smoking after his diagnosis. He had immunotherapy for quite a while but his cancer got clever and it had to be stopped. This latest treatment he’s starting on Friday is 4th line chemo - here in UK I don’t think there’s anything else - we’re trying to keep calm and positive but things seem to be moving quite quickly. Horrible cruel disease- Thankyou for your information much appreciated xxx

[sassassas]

Hello Brian

I'm sorry to hear your brother is having such a difficult time and the effect this is having on you and your sister. I hope the gemcarbo treatment works well for him.

Best, Sarah x

[Brianderrick12 in reply to sassassas]

Thankyou x

[Leniko]

I am sorry and will pray for your brother.