Palliative care : I have stage 4 nsclc... - The Roy Castle Lu...

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Palliative care

Debs0768
Debs0768

I have stage 4 nsclc diagnosed in March 2020. Over last 6 weeks have been in hospital 3 times and am in at the moment.

Been told no further treatment and palliative care team have been to see me. Devastated that I have not even had a year, now have to prepare for the end

19 Replies
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Hi! This is my 1st time replying here. Please don’t give up! Ask for alternatives, find other docs for 2nd, 3rd, 4th opinions! Stay positive and god bless!

So sorry Debs please please get second, third, fourth opinions...hang in there & fight as I wish I had done when my husband was diagnosed. Sending a big virtual hug. Xx

Have you been tested for mutations? Definitely worth knowing that you have. Thinking of you x

I can only imagine how you are feeling so sending you a big hug.

My dad is stage 4 and was diagnosed in September. He has his 4th and final chemotherapy and immunotherapy together tomorrow then a scan the 16th January to see if the treatment has worked. If it has then he will remain on immunotherapy every 3 weeks.

I’m terrified for the future for him.

What’s causing you to be in hospital? Have they stopped your treatment because you are having the same recurring problem?

At this stage I would be looking at a 2nd opinion as you’ve nothing to lose.

My heart hurts for you facing this. Sending lots of prayers for you xxx

Debs0768
Debs0768 in reply to simlut

Infection that they can’t really source. Left lung basically not working at all , tumour has collapsed the top of the lung. Right lung showing some inflammation as it’s been working to compensate.I do t know if asking for a second opinion is something I have the energy for. I’ve had chemo, immunotherapy and a single cycle of a further chemo that is apparently last chance saloon stuff. I think it’s too far gone.

Thank you for your kind words

simlut
simlut in reply to Debs0768

Are they trying different IV antibiotics each time? I hope you start responding to the antibiotics and things improve for you.

Did your tumour shrink after the original chemotherapy and immunotherapy treatment? Xxx

Debs0768
Debs0768 in reply to simlut

No first chemo( carboplatin and Pemetexed) was stopped after two cycles as it had grown. Had 9 cycles of immunotherapy, most scans were inconclusive but it wasn’t working either. One cycle of Docataxel caused surgical emphysema. I am on an antibiotic call Taz ( short for a longer name I’m sure! No fever in last 24 hrs so fingers crossed!

simlut
simlut in reply to Debs0768

My dads stage 4 Squamous Cell Carcinoma NSCLC and his is in his right lung, his ribs, spine, hip and femur and adrenal gland.He’s having 4 cycles of chemotherapy Carboplatin and Paclitaxel and immunotherapy drug Pembrolizumab (Keytruda). His last one is tomorrow then his scan is 16th January.

Thankfully my dads had minimal side effects from the treatments so far (touch wood). He’s had Emphysema for over 20 years and takes the Trelegy Ellipta inhaler for that which helps as he’s not breathless and his oxygen SATS are 98% most of the time.

He also had Klebsiella Pneumonia 4.5 years ago and it caused fluid around his heart and left him with Atrial Fibrillation so he’s on lots of medication to control that.

Keeping everything crossed for the antibiotics to work but don’t give up without a fight. My aunt had severe Emphysema and 5 years ago was in hospital and the hospital told her that the antibiotics weren’t working and they wanted to stop treatment but we persuaded her to give it another week and she got better and lived another 4 years.

Make sure you eat even if you aren’t hungry have ice cream and custard, rice pudding. Ask for Fortisip drinks to boost your calorie intake and to get your vitamins and minerals.

Sending lots of prayers and big hugs xxx

Sorry to read of your situation Debs - palliative care is important to instigate as early as possible to ensure you can access better pain control, have access to other services whether in your own home or another setting, access financial support where appropriate etc - in recent years the lung cancer and other cancer communities have pushed for it to be labelled 'supportive and palliative care' . Many stage iv nsclc patients live years with treatments almost in a chronic condition. inflammation in the lungs can have many causes including infection - as somebody who's been hospitalised several times since 2015 with severe chest infections since my left upper lobectomy in 2010 there have been several concerns of recurrence although thankfully not turned out that way in my case. It's common in the UK to offer palliative radiotherapy - has that been considered? I understand the need for energy - physical and emotional by seeking a second opinion and looking for another centre but worth asking more questions. the other lung shouldn't show inflammation due to compensating - unless there is another underlying issue like infection or some other inflammatory response condition in your immune system. do you have other conditions like diabetes, COPD or anything? I've met patients since my involvement in research since 2014 who've done way better than they or the medics thought.... hope that's the case for you... thinking of you.

Thanks

RoyCastleHelpline
RoyCastleHelplineAdministrator

Dear Debs0768,

The main aim of palliative care is to help you maintain a good quality of life if you are diagnosed with a serious illness, this can be achieved by managing symptoms such as pain, breathlessness, cough etc. as well as emotional and psychological support and social care if required. As JeanetteR57 has said if referred to the service early problems can be identified and dealt with early. Palliative care can be offered at any stage of your illness and it does not necessarily mean that you are likely to die soon, many people receive palliative care for years and it can be used alongside treatments such as chemotherapy or radiotherapy.

If you would like to talk with someone please get in touch either by email at lungcancerhelp@roycastle.org or our free phone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

I’ve been told I have months .. not sure how many as depends how fast the cancer continues to grow. Palliative team have been very good in reassuring me re care and management of symptoms at home

RoyCastleHelpline
RoyCastleHelplineAdministrator

Dear Debs0768

It must be very hard and confronting to hear what the doctors have said and although an approximate time may be given, many have surprised doctors. It is great to hear you are being well attended to with the palliative care team and continue to be guided by them.

Hope you get out of hospital soon and please do not hesitate to contact us if you would like to chat about anything 0800 358 7200 or email us at lungcancerhelp@roycastle.org

Kindest regards

The Roy Castle Support Team

I’m home now for ‘end of life care’. I thinkI need to talk to someone as my head is so confused, don’t know how to prepare myself for dying

RoyCastleHelpline
RoyCastleHelplineAdministrator

Dear Debs0768

So very sorry Debs, just hearing those words must be very upsetting and no wonder your thoughts are all over the place.

It is good you are home and any symptoms you have can be managed in the comfort of your home with the support of the palliative care team, which are in place for any life limiting condition.

Our helpline is open today until 4pm if you wish to talk to us 0800 358 7200, please leave a message if this goes straight onto voicemail as we will call you back.

Macmillan support provide some good information and suggestions on coping with this if you wish to look at this: macmillan.org.uk/cancer-inf...

Kindest regards

The Roy Castle Support Team

RoyCastleHelpline
RoyCastleHelplineAdministrator

Dear Debs0768

Anyone facing this would have their emotions up and down, you may feel anxious, panicky or angry, all of which is normal. Do speak to your family and friends.

Sometimes it is easier speaking to someone out with your support network.

We have a new service called 'Keep in touch' where one of our dedicated team members will email or telephone you once a week to see how you are and provide support, if you are interested in this you can either let us know by email at lungcancerhelp@roycastle.org or you can register through this link:

roycastle.org/covid-19/info...

Kindest regards

The Roy Castle Support Team

Don’t give up hope please.

Keep your spirit up Debs stay as positive as you can, if you need help please please contact Marie Curie as they were absolute godsends for my husband & me with practical “ end of life care”. Roy Castle support team also provided some helpful information on email/ phone. We found MacMillan useless . All the nurses told us my sons & I were the most organised & efficient team of family Carers they had ever seen...we are in the process of writing a booklet which the palliative nurses asked us to do. If you want to PM me I’d be only too glad to pass on any advice .

Debs0768
Debs0768 in reply to KT22

Thank you xxxx

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