ALCLFC

Hi,My dad who is 66 has 3B NSCLC too - he had a 9cm tumour on those central lymph nodes.

Dad had 4 sessions of chemo and immunotherapy and it shrunk to 6cm! He's now on immunotherapy - a double dose every 6 weeks...next scan in March.

Sending lots of love x

mannyjoshi in reply to ALCLFC

Sending prayers and good health wishes to your dad. I am glad to see that it has shrunk, I pray he has a full recovery. How long did it take until dad could swallow again after the treatment x

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simlut

It’s so very hard seeing our loved ones struggling.My dad is 70 and was diagnosed in September with stage 4 Squamous Cell Carcinoma NSCLC.

His has spread so is in his right lung, his ribs, spine, hip, femur and adrenal gland.

Did the NHS say why they weren’t offering treatment for your mom? My dads having 4 cycles of chemotherapy Carboplatin and Paclitaxel and immunotherapy drug Pembrolizumab (Keytruda). He’s had 3 cycles so far with his final one due 8th January.

My dad will then have a scan to see whether the treatments been working. If it has he will go on a maintenance treatment plan. I really don’t want to even think it might not have worked and what will happen then.

My dad hasn’t had radiotherapy but my friend has had it this year for mouth and throat cancer and they’ve told her the radiotherapy carries on working for at least 6 months so she finished her treatment in April and in August her scan showed the tumours were still shrinking and she’s just had another scan and will get the results at her January. I think the soreness was better after about 2 weeks.

Has your mom got a mouthwash to numb her throat or a spray? If she is able to have ice cream that’s high calorie/ fat and would be soothing too.

Sending prayers for your mom and big hugs to you both xxx

mannyjoshi in reply to simlut

Thank you for the advice, I have passed it on to mum, I really appreciate it. I have asked her to try the numbing spray, its also the sickness that is not helping. xx

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simlut in reply to mannyjoshi

You can get anti sickness medication so it might be worth asking for some. Hopefully your mom will start feeling better very soon.My dad has Fortisip Compact drinks with a Calogen extra shot in when he misses a meal for whatever reason and he got them on prescription. Both together is only 160ml if drink but 460 calories so if your mom could manage 4 of them a day then she would be having 1840 calories xxx

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JanetteR57

Sorry to read about your mum's diagnosis and that she has already started treatment that shows it hasn't grown. Immunotherapy has proved to be good for many patients and the pandemic has meant it's been available for many others who wouldn't usually be clinically eligible. I'm saddened that the NHS said there was nothing they could do yet privately she has been given treatment - the national lung cancer audit shows every year that many patients in stage 3 are not offered the treatments that could help them. Very few patients are eligible for surgery (which I had in Dec 2010) but many respond to the variety of treatments available - dependent on the specific characteristics of the tumour, patient and any other conditions. Stage 3 is the one that clinicians often differ in their opinions but more in the order of the treatments to be given as multimodality is the common approach - i.e. chemotherapy and radiotherapy, sometimes with immunotherapy and sometimes surgery is possible after other treatments. Clinical Trials offer a chance to try new treatments and are not permitted to be 'less than standard care' so if she is eligible for this, that would be good. Like your mum I was fit and a never smoker and 52 at the time of diagnosis - due to lack of symptoms, too many UK patients are detected when it's already at advanced stages. This information may help and I'm sure other patients or relatives will respond with positive stories as I've met many over the last 5-6 years of involvement in cancer research who have survived even over 20 years at advanced stage without some of today's more targeted treatments even being available. never give up..... roycastle.org/about-lung-ca...

mannyjoshi in reply to JanetteR57

Thank you Janette for your detailed reply. Moms cancer has been such a shock, I just cannot comprehend what is happening. Moms markers/mutants showed no positives, she has something called hur4? They said this would be a concern but not too much as they are treating her through a different pathway which is with the chemo (two times) 30 radiotherapy that she had and now will start the immunotherapy pacific trial. The NHS said it was not curable and wrote her a letter saying we advised you it wasn't curable and you took it quite well (that was six weeks after telling her). Thank god we had private healthcare and they looked at the scans and everything and confirmed mom had stage 3b not 2b like the NHS said. They also said that because only 1cm was on the other lung they could try the curate option. I pray this goes away and never ever comes back anywhere else in moms body. I pray they find a cure soon to stop this horrible disease that is destroying so many peoples lives. Can I ask how come they are offering immunotherapy more during COVID? Is it because it is less labour intensive than radio and chemo. I pray you stay in good health and thanks again for reaching out x

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JanetteR57 in reply to mannyjoshi

It's a mutation of HER4 (often HER2 is affected in breast cancer so women may more be familiar with the genomic term) but quite rare in lung cancer. At the time of my diagnosis the only targeted therapy was for EGFR positive but I tested negative for that but in the intervening years so much more has been learnt about the many many mutations in lung cancer - some of which now have several targeted therapies (ALK, ROS1, EGFR, HER). Immunotherapy is usually prescribed based on a score of PDL1 (a protein level) and above/below a certain level are eligible but those on the opposite end of the scale aren't. however the pandemic allowed access to many more patients (irrespective of their measurement) as it can involve fewer hospital visits and the risk of covid development in hospitals for those who are vulnerable was considered very high especially at the start of the pandemic. Some of the targeted treatments also involve oral (tablets) rather than infusions (drip) treatments so can be given at home in some cases or centres that don't have covid patients in them. The way the independent sector (private) hospitals have been used by the NHS has also meant that cancer services have been able to restart and continue whereas. in the early days of the pandemic all services including cancer service stopped. There are many whose cancers cannot be 'cured' but they live reasonable lives all the same..... Roy Castle lung cancer foundation and macmillan run nurse led helplines for patients and relatives/friends affected by cancer so you can always contact them with your questions/concerns too for some support for you.... good luck. roycastle.org/about-lung-ca...

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DaisyFlower06

I’m not in the same boat as your mum but I have had a 85% reduction from chemo and immunotherapy, there are lots of positive stories out there for treatment that works and sometimes we have to try different ones to the right one is found. I hope that your mums throat and swallowing improves and she can start treatment again soon. Best of luck xx

mannyjoshi in reply to DaisyFlower06

thank you daisy do you have the same cancer as mom and how long have you been fighting this, praying for good health for you all xx

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DaisyFlower06 in reply to mannyjoshi

Hi Manny, yes I think so, but mine is more advanced I believe although I never asked for a number, it won't help me mentally! I was diagnosed in Feb, so quite new. I wish your mum all the best xx

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mannyjoshi in reply to DaisyFlower06

you have had an 85% reduction, you are going to win this fight. Praying for you xx

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flatterycat

Sorry to hear the news about your mum. My mum was diagnosed in April right at the start of the pandemic so I know how hard it is not to be able to see them. My mum was diagnosed with stage 3b NSLC and started chemotherapy combined with immunotherapy. She started with 3 rounds where she had two types of chemo and the keytruda. She had a scan which showed a good reduction. She then continued with chemotherapy and immunotherapy. Only this time there was only one chemo drug used. Her second scan showed marginal growth so I’m worried about that. They have said for her to have another 3 rounds of this in the hope that it does help but I am quite worried - if it hasn’t helped how can another 3 rounds of the same help? My mum had none of the markers for targeted therapy and her PDL1 was less than 1%, so I was surprised that they went with the immunotherapy at all. If at her next scan there’s no improvement, they have mentioned radiotherapy. I hope your mum’s treatment is successful and her trial gets some good results.

Sarah x

mannyjoshi

What is a pdl level? Thank you and I pray for your mom to get better soon xx

JanetteR57 in reply to mannyjoshi

it's a measurement of protein (PDL means protein death ligand) but don't worry too much about all these scientific terms - basically lung cancer these days is treated with targeted agents dependent on the results revealed from the biopsies - and the results then determine the next treatment agent - so although people may have chemotherapy, they may have another 'targeted agent' component in their treatment. PDL1 measurements are usually used to determine who will be eligible for immunotherapy (as this was the patient group on whom it was trialled and for whom use is approved by the regulator) but since the pandemic, it has been offered to some patients whose results wouldn't usually make them eligible for this.

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RoyCastleHelplineAdministrator

Dear Mannyhoshi

Welcome to the forum where as you can see there is plenty support and encouragement. Sorry to hear about your Mum and how difficult and challenging this must be for you all, especially during Covid-19.

There have been some wonderful and informative responses of which there is not much to add.

You may find this link from Cancer Research UK helpful on swallowing difficulties and diet: cancerresearchuk.org/about-...

and also from Macmillan support:

macmillan.org.uk/cancer-inf...

If there is anything you would like to discuss you can either email us at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200

Do take care of yourself

Kind regards

The Roy Castle Support Team

Ellejayb

I'm so sorry to hear what you're going through but what a lovely caring daughter (son?) you are. I was diagnosed with incurable Stage 4 NSCLC in January 2019 and was put on a combo Chemo and Immunotherapy treatment for the first four cycles, then maintenance Chemo and Immuno after that, going to just Immuno every six weeks after last March's lockdown.

My tumour was 8.5 x 5 and has shrunk to 5 x 3 (and the cancer in my spine has all but gone). My PDL expression was >90% so my 'biology' was on my side for Immunotherapy and I am grateful for that. I am living a normal life (just have to ration my energy and my skiing days are behind me!) and only a handful of people even know I have got cancer.

Incurable doesn't mean the end, far from it. There are loads of us out there smashing statistics and I hope your mum is one of them. At treatment chatting with other patients, a common theme is how we've blown our savings on last hurrahs, then found out that we were still going strong!! I've talked to some who expected to be gone 10 years ago and are still chipper. I am 61 and fully intend to be around for my 70th!

I hope she gets the treatment that works for her. Sending you and your mum all the best.

mannyjoshi

Hi Ellejayb thank you for your kind and detailed message. My mom has worked so hard all her life and this is the time she should be enjoying life and now this has happened. It is disheartening and such a worrying time. I am glad to see that you are doing well and hope this continues well into your 70's! Mom is now slowly recovering from chemo and radiotherapy and just started eating a little. She will now start the pacific trial immunotherapy for a year. x (p.s. daughter)