Treatment end: So yesterday was advised... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Treatment end

mundy
mundy

So yesterday was advised that scan shows progression in the lung and a liver met.

Treatment is not helping so discontinued.

Carry on now with palliative care.

In some ways I’m relieved but also feeling a bit lost.

35 Replies

These words are my exact mums , very recently similar situation , there’s only so much hope and let downs people can take when they find out the treatment isn’t working , it’s soo hard but my mum seems like she’s found peace now she has accepted things and the toll of hospital and treatment isn’t a worry anymore , she is now trying things holistically and has found a little peace having got her head around things a little xx good luck and take care xx ps have a read of Olivia Newton johns story with her cancer metastasis it’s very interesting xx

mundy
mundy in reply to Mistyglo

Thank you

I think we are following a similar timeline . Strange that some of us don’t respond to any treatment.

Mistyglo
Mistyglo in reply to mundy

Funny isn’t it! My mum was the ideal candidate for immunotherapy but it didn’t work , they wanted her to start the clinical trials but the pros and cons of being away from her family and grandchildren were not worth it when the outcome would have been no different anyhow so we have all forgot about the cancer word and will have fun together without her being poorly off chemo and make the most of everyday day taking things one day at a time xx

mundy
mundy in reply to Mistyglo

Immunotherapy didn’t work for me either. I’m not suitable for trials.

He did say he is going to explore requesting a drug on compassionate grounds, but I suspect that was his need to offer something rather than being a realistic option.

Mistyglo
Mistyglo in reply to mundy

I would honestly say like my family that the quality of life is a lot more important rather than quantity which probably isn’t going to be much difference if the drugs arnt working so keep positive xx

Mistyglo
Mistyglo in reply to Mistyglo

That did not mean to sound so harsh , after I read it back it sounded very abrupt I’m really sorry but just giving you the advice that helped my mum and family xx

mundy
mundy in reply to Mistyglo

I did not read it in that way. I agree with you. I am relieved that a decision about carrying on treatment has been taken from me. My husband would have made such a decision very difficult for me.

What holistic things is your mum using?

Mistyglo
Mistyglo in reply to mundy

We really about Olivia Newton johns story and we have gone onto cbd oil now that our local pharmacy has recommended to help with back pain and jaut doing gentle exercises etc only been a day but the pharmacist mother had breast cancer metastasis and it really helped her xx

Mistyglo
Mistyglo in reply to Mistyglo

Read *

mundy
mundy in reply to Mistyglo

Looked into CBS oils before I will look at it again thank you

Mistyglo
Mistyglo in reply to mundy

Your very welcome, good luck and if we try anything that seems to help my mum I will recommend x

mundy
mundy in reply to Mistyglo

I was 61 in May, in 1991 at the age of 61 my mum was diagnosed with bowel cancer, inoperable, after Christmas I took time off work and with my dad we looked after her at home until she died in June. I know something of what you are going through

Mistyglo
Mistyglo in reply to mundy

Aw, It’s just awful isn’t it!! My mum was diagnosed last April to the day and my dad spontaneously took poorly in June last year not long after we found out about our mum and he lasted 6 weeks 🥲🥲 with the same thing lung cancer metastasis!! Xx it’s been a tough year!! Xx thank god for work and our children keeping us all sane and having fond memories and a good close family and friend network Cas I often wonder how we’ve all coped soo well but I suppose you just have to and to be fair I have really found this site and and talking helps xx

Mistyglo
Mistyglo in reply to mundy

I always end up sending more messages because i forget stuff sorry x we like you was lucky to keep our dad at home to of which to his last breath he managed to say thank you 🥲🥲 knowing you did that probably gives you such peace of mind amongst the sadness xx it’s called doing our best by them however heartbreaking and exhausting xx

mundy
mundy in reply to Mistyglo

Me too 😂😂

My mum had both her parents die in our home one breast cancer the other throat ( within a couple of months) we were determined to do the same for her.

My dad frequently had doubts that we were doing the right thing but they never lasted long.

mundy
mundy in reply to Mistyglo

Ordered my oil 😊

Debs0768
Debs0768 in reply to mundy

In the same boat, treatment stopped in December so just trying to make the most of the time I have left Much love x

mundy
mundy in reply to Debs0768

Sorry to hear this Debs

My secondaries are bone and liver. Needing more and more morphine but going to try switch to THC as hopefully fewer side effects

Debs0768
Debs0768 in reply to mundy

I had brain mets diagnosed in December and treatment was stopped as 3rd line treatment had given me surgical emphysema and disease was progressing. Feeling ok except can’t walk far or do much that needs exertion

I can’t begin to imagine how you feel going through this yourself, only how I will feel when my dad is told the same.He’s had 4 cycles of chemotherapy Carboplatin and Paclitaxel with immunotherapy drug Pembrolizumab (Keytruda) and has now had two double doses of immunotherapy without chemotherapy.

Dads PDL1 was less than 1%. His scan is the 20th April but he’s started getting pain under his arm on the side his main tumour was. I’m terrified.

We’re you not given a different chemotherapy option?

Sending you lots of love and big hugs xxx

mundy
mundy in reply to simlut

Thank you

I had tried my second option. I’m not suitable for trials.

He is asking for something unlicensed from the company on compassionate ground but I think this his just his need to offer some hope rather than being realistic

simlut
simlut in reply to mundy

Have you had different chemotherapy options? My dads Oncologist mentioned him having Docetaxel as the next chemotherapy option xxx

mundy
mundy in reply to simlut

Just been on that but it didn’t work for me

simlut
simlut in reply to mundy

Do you know what they are looking into now, the unlicensed drug? I hope you can find some alternatives to try xxx

mundy
mundy in reply to simlut

I didn’t ask but have emailed him since to ask

I take the proper canabis spectrum. I have had and finished treatment but take it for maintainence. It’s worth trying as you have nothing to lose xx

mundy
mundy in reply to Kalilou2

I have ordered some thc oil this morning.

Kalilou2
Kalilou2 in reply to mundy

Great. Go careful with it it can be strong

Build it up steady.

I took it 4weeks before I started treatment had a pet scan and the Dr told me the lymph nodes looked better than what the CT scan did. I carried on with the oil after I had chemo.

I swear that’s what’s helped me. It also helped with the radio inflammation.

Good luck I hope it helps you x

mundy
mundy in reply to Kalilou2

Thank you

I don’t even drink alcohol and have had a few puffs from joints over the years, so I’ll be starting very slowly 😂😊

Mistyglo
Mistyglo in reply to mundy

🙂🙂

Mistyglo
Mistyglo in reply to Kalilou2

Hi what oil did you try and buy as intrigued for my mum , always good to have other recommendations xx

mundy
mundy in reply to Mistyglo

It’s a strong tincture from a guy who has come strongly recommend ed

Strong 67%

facebook.com/groups/3970837...

mundy
mundy in reply to Kalilou2

Yes I gather it is 67%

Sorry to hear treatment options run out although as the oncologist said, some treatments are available on clinical trials or compassionate grounds so don't give up. Also palliative treatment doesn't mean abandonment - there should still be supportive care.... for holistic approach have a read of 'anticancer - a new way of life ' that tackles the whole spectrum, sleep, diet, mental health, keeping active - an interesting read that I've reread several times....hopefully your consultant will arrange the best supportive care and team for you to help you... thinking of you.... roycastle.org/about-lung-ca...

Prayers for everyone 🙏🙏🙏

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