Last chance saloon

[Spananf]

My husband was diagnosed with nsclc in November 2018. He has since had chemotherapy and radiotherapy. He had a good response to the radiotherapy but at the scan results we learnt that he had 2 new suspected metastasis. 3 months later we were told he had a tumour in his other lung and also his liver. He than started on 6 cycles of chemotherapy/immunotherapy. We had great hopes for this but after 4 cycles a scan showed disease progression so the treatment was stopped. He also has a choroidaL metastasis which was found during a routine eye test. He is now about to start on docetraxel-nintedanib and we both feel that this is his last chance as nothing else has worked. Is anybody familiar with this chemotherapy or perhaps had it?

[Hidden]

Hi I was wondering how he was getting on

I'm sorry to hear things have not gone well I have had a similar journey as you know Had my latest scan results today and although the immunotherapy has kept the main tumour in my lung stable there are two new mets One in my liver and one in my spine. They are stopping my treatment! Previously doxetraxel was mentioned as a follow on treatment but oncologist now Saying she advises against it I should have no treatment but hopefully a better quality of life OI am devastated as feel all hope has been taken away from me I am not giving up though I am Looking into the use of repurposed medicines e.g. Metformin and statins but can't do hat at the moment as nausea is too bad

I do hope the doxetraxel works for him Apparently 20 per cent are helped by it I hope he is one of the lucky ones Please let me know

Best wishes

[Spananf in reply to Hidden]

I’m so sorry to hear this. This sucks big time. I think we put all our hopes on the immunotherapy so to be told that it’s actually progressed while on this was devastating. The oncologist has said that this chemo is brutal and that he may not be able to tolerate it but he’s going to give it a try. His breathlessness has got really bad but they think he is fit enough to try.

We have also been looking into cannabis oil but not done anything yet.

Please keep me posted and I send my very best wishes to you

[Hidden in reply to Spananf]

I truly hope he responds well he deserves to

[Hidden in reply to Spananf]

Just a thought You say your husband has become more breathless Have they checked for a blood clot? Mine would probably have gone undiagnosed if I hadn't had pneumonia Apparently people with lung cancer much more likely to develop a clot

[Spananf in reply to Hidden]

When he had his scan they thought they had seen a blood clot and checked it out with the doctor straight away. The doctor was convinced that it wasn’t a blood clot so he was allowed home. Apparently his lungs aren’t in great shape after the radiotherapy .

Thank you for the thought, it all helps

[Babydolltina in reply to Spananf]

Spananf, I'm so sorry to read about your Husbands Problems with his NSCLC. Please DO NOT go down the Cannabis Oil Route. It works on certain types of Cancer Maybe, but this week I have heard about the effects of it. My wife is in hospital because her SCLC is causing her some hell. The person next to her has the same Cancer. She had Radiotherapy and it started to work by shrinking the tumor. Cannabis oil was then taken and it is Mutating around her spine. 90% of the Onco's think this was feeding it so it started growing again.

Just Be Careful and Ask their Advice First.

Good Luck To Your Husband.

[Kalilou2 in reply to Spananf]

I was diagnosed Dec 13 2018

Inoperable 58 mm tumour which runs through a nerve and a big vein in the right upper lobe near the windpipe.

I was put on four cycles of cistplatin and vinoralbine.

I like you husband responded well I’m 6 months ok at the moment.

I’ve been taking canabis oil since I was diagnosed but did not take it during the treatment as I wouldn’t have know what was working.

However while I was waiting for treatment I had a CT scan before treatnent then a PET SCAN after one round of chemo. The Dr said the Pet scan looked better than the CT and the lymph node also looked a lot better.

I’m confident it helped me. All you can do is try it you have nothing to lose x.

[448690 in reply to Hidden]

Have you thought about getting a second opinion? You should have all the knowledge to make the decision of further treatment or not. Wishing you good luck.

[Hidden in reply to 448690]

Hi

Thank you for your advice I rang this morning and my oncologist appears to be quite happy to refer me for a second opinion Will keep you informed

[448690 in reply to Hidden]

They usually are good with their patients getting a second opinion. I know if it was me and my oncologist told me, no more treatment, I would want a second opinion. Because you never know, the next treatment could be the one that gives you both. Wishing you all the best. Keep me posted.

[Hidden in reply to 448690]

I have had so many different treatments including trial drugs but always worth another try! Will let you know how I get on Many thanks

[Spananf in reply to Hidden]

Hi Addy

I was just wondering how you’re getting on and if you got your 2nd opinion?

[Hidden in reply to Spananf]

Hi

Still waiting for second opinion Think I will enquire tomorrow Just think whilst I dont know I can carry on hoping! I have been suffering with dreadful nausea Ended up having metrclopamide injectionsThey helped but not as much as I had hoped Currently on Ondensetron twice a day and seems to be helping but of course makes you constipated

How is your husband getting on,? How is he tolerating treatment?

[Spananf in reply to Hidden]

He started last Tuesday. He’s not too bad but very lethargic and a nasty rash on his head. He’s also got a bad back but we don’t know if it’s the cancer, the treatment or the fact that he sits in a chair most of the day at the moment! He had a brain scan last week and although we haven’t had the official report his oncologist said that he’d looked at it and couldn’t see any signs that it had spread. I don’t think he would have said that if he wasn’t sure. So now he will probably have raradiotherapy to his eye but we will find out on dec 16th.

I hope you get some answers soon. Please keep in touch

[Hidden in reply to Spananf]

Pleased to hear no progression in brain I get back ache too and find that heat helps I also use ibuprofen gel Of course you must check if it's ok with other treatments

I will let you know how I get on Good luck and best wishes

[Hidden in reply to Spananf]

Hi

Just to say I have appointment with another oncologist tomorrow in a different health authority for second opinion Fingers and everything else crossed!

Best wishes

[Spananf in reply to Hidden]

I certainly will cross everything possible!

Very best wishes, please let me know!

[Hidden in reply to Spananf]

Hi

Received second opinion today Unfortunately they agreed with my oncologist Immunotherapy not working and I'm not strong enough for other treatments or trials Sort of what I expected but I hoped for a different outcome

I am still going to try the repurposed medicine route taking Metformin Statins and an antibiotic once I have sorted the nausea.

I really hope your husband responds well to his treatment Please keep me informed

Very best wishes

[Spananf in reply to Hidden]

I’m so sorry to hear that. My husband is struggling big time on this new treatment. They warned him it would be hard work but I think he thought he’d be ok. He’s having an IV every 3 weeks and tablets every day so there’s no break from it. I’m not sure how long he will endure it for. He says he will keep going until they scan again after 4 cycles to see what it’s doing. We’re still no further forward about the eye mets. I really hope you can sort out going down the other route.

Please keep in touch, best wishes x

[Hidden in reply to Spananf]

So sorry to hear he's struggling Pass on my best wishes Please keep in touch x

[Spananf in reply to Hidden]

Hi Addy, just wanted to stop by and ask how you’re doing?

As my husband is still very breathless his oncologist doesn’t think that this treatment is working. He had his 2nd fusion on Tuesday and he will be scanned in the new year. If there is still further progression the treatment will be stopped. He also has brain mets now.

Hope you’re doing ok x

[Hidden in reply to Spananf]

Hi I ve been thinking about you too

Sorry to hear isn't going too well for him at the moment I've been in hospital all week Started with dreadful tummy ache and diahoreah Every 15 mins It was intolerable So weak! They admittedme straightaway. On lots of drips etc antibiotics and steroids It appears the immunotherapy which wasn't doing a great job decided to attack my bowel! !Also discovered I had Dif C so put in isolation!! Hoping to be discharged today Cant help but wish everything could be made better with steroids a drips Someone in hospital tell g me about a type of personalised immunotherapy available in Germany Working well on her brothers brain tumour

Hopefully your husbsnds scan will show some improvement Will they do anything about the mets in the brain? I ve read some people have whole brain radiation Treatment seem to vary so much Its just too hard sometimes Please keep in touch I think about you often

[Spananf in reply to Hidden]

I have sent you a message on the private chat with my email address.

Maybe we could chat that way? X

[448690 in reply to Hidden]

Make sure you get them to prescribe you anti-nauseu pills? You shouldn't have to deal with nausea. Call you oncologist nurse.

[Hidden in reply to 448690]

Hi

I have had a range of anti sickness tablets and even some injections It's been really bad at one point sicking back the anti nausea tablets! Now on Ondensetron which seem to be helping

Thanks