Hello there - any advice about Chemo (Carboplatin and Pemetrexed) and Immunotherapy (Pembrolizomab)?

[Boo_Radley]

Hi, so I was diagnosed just before Christmas (Is cancer the Christmas Grinch? 🤔 It was in my case....) Anyway, having been diagnosed with NSCL cancer I've now been put on a treatment plan, and start on Monday next week. Has anyone got any top tips for getting through the next few months? It all sounds rather gruelling, but I don't feel that waiting around to let the sneaky beggar mutate is an option. Any practical advice / hints / tips on coping with side effects, and the treatment would be very much appreciated. 👍😀 Stay healthy and positive everyone. 😘

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Boo_Radley

Welcome to the forum and so sorry to hear you have lung cancer.

In preparation for any treatments, it can be quite frightening to hear all the side effects and hope you hear from others in the forum who have been through this treatment regime.

Not everyone has the same side effect or intensity, I have placed below a link to our booklet on chemotherapy: roycastle.org/app/uploads/2...

Thankfully, lung cancer treatments have improved over the last decade with new drugs like Immunotherapies and targeted therapies.

Macmillan support online has some good information on this combination of chemotherapy: macmillan.org.uk/cancer-inf...

There can be a few cycles of the chemotherapy with the Pembrolizumab, then you continue on the Pembrolizumab, this is our booklet on Immunotherapy: roycastle.org/app/uploads/2...

The first few cycles may make you feel quite fatigued and if there are any side effects, for most, these symptoms pass when the chemotherapy stops. We always advise that if you have any change or new symptoms during your treatment to let your oncology team know, as the sooner you have this assessed, the better managed it may be.

We have a range of support services, from one to one support to online support groups through zoom , if you are interested in any of these you can register through this link: roycastle.org/help-and-supp...

We offer a one off grant of up to £150 for anyone with primary lung cancer and you can apply for this through this link: roycastle.org/patient-grant...

To qualify for the patient grant, the lung cancer has to be a primary and it is means tested.

If there is anything else you would like to discuss you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

All the very best for your treatment

The Roy Castle Support Team

[Boo_Radley in reply to RoyCastleHelpline]

Thank you! All really helpful information here. I'll have a nosey at those links, thanks again.

[Cockailschemocancer in reply to Boo_Radley]

Hi boo_radley

- so sorry to hear you are on this journey and yes it’s the Christmas grinch.

I had this treatment and I had a really good response and I know others did the same so hope its good for you too!

I wrote a list of things down on what I wish I knew when I started the journey and posted it on my Instagram. My account is @CocktailsChemoandCancer and it’s pinned to my page. Hopefully there will be some helpful tips there for you.

Wishing you all the best

Kerrie xx

Instagram post

[Cosmic54]

hi Boo I was diagnosed 6 months into starting our new life in retirement, brought our dream house moved away from friends and had big plans on visiting friends and relations in Australia, but hey that was when Beryl the lung lodger decided to make her appearance for the first time 🤦‍♀️ I had radiotherapy which took me into Christmas 2021 that was the worst Christmas I ever had in my life, then onto immunotherapy…. The only side effects I have with immunotherapy is tiredness..constipation and headaches (now and then) which all can be sorted with over the counter meds (if you can) didn’t have chemo. Hope that small snippet of info helps..stay strong and positive and try to eat you need to keep up your strength. 🤞

[Brianderrick12]

Hi Boo - my brother is doing really well off that treatment- hasn’t lost his hair or had any sickness etc - his appetite if anything has increased - he’s put 11 kilos on. We’ve been fighting just over a year now & settled into the routine. He has treatment every 3 weeks at the moment. His oncologist is fantastic with him - regular CT scans & tweaks his medication to ease his cough. Good luck with everything- it’s such a shock - my brother was also a Christmas cancer shocker & we were clueless as to what to expect - we just keep going ❤️

[Hidden]

Hi Boo, I was also diagnosed in Dec but one year earlier than you and have had same treatment. I cannot fully remember how I managed it (taking one day at a time and going for a daily walk) but one year after and i am free of cancer at the moment. so that s hopeful. whatever discomfort it is good to remember that it is transient and wont last and brighter days ahead! Good luck and fare well .Chanie

[StevePr]

Hi Boo_Radley,

You will by now have read or heard loads of advice, by far the best of which will have come from your consultant(s).

What I would add is this: immunotherapy REALLY messes with your immune system. Mostly in a good way, of course - that's the point. Also, however, in a bad way - sometimes and unpredictably.

The thing to remember is just doing all the right things (diet, habits, lifestyle, etc) isn't necessarily the way to go. What would normally be "right" can easily turn out to be wrong for a system running on immunotherapy. There's no end of people with bad experiences on immunotherapy despite doing ALL the right things. Few if any experimented with eliminating some of those right things to find out if they were actually wrong for "me on immunotherapy".

Finding out isn't simple, think of the variables: what touches your skin (from shower gel to clothing), what you eat and drink, the air that you breathe (I use a HEPA filter with all options switched on), etc. Do it right and it can take over a year and you'll give up before reaching perfection, but at least you could reach acceptable.

Me? Five years on Pembrolizumab. Could have done longer but I went from stage 4 to stage 1 and then had a lobectomy.

kind regards

Steve

[Nora1234 in reply to StevePr]

hi Steve I am interested to know the side effects you had from immunotherapy. The immunotherapy is working so well on my husbands cancer but the side effects he has got is pneumonitis which he is really struggling with. Your post sounds really interesting and wondered if you could expand on what else you did and what you found out

[StevePr in reply to Nora1234]

Hi Nora,

I hope you will understand that the products of 5 years' trial-and-error experiments on each and every side effect I had conducted one at a time on a "with then without then with again" basis for certainty would probably exceed what's reasonable to expect anyone to read, let alone write. Throw in the fact that we're all different and react differently then whatever I put would be largely irrelevant to anyone else anyway. You're going to have to do the heavy lifting yourself if it's going to mean anything useful.

Specifically to pneumonitis, I became something of a mucus factory pretty much everywhere. Runny nose, productive cough, loose stools, etc. Eyes make mucus too - who knew? Yeah, EVERYWHERE. It only stopped when I came off the Keytruda. That was my immune system fighting an enemy that didn't exist. There wasn't much I could do about it, but the main risk as I saw it was being a host for secondary infection - that mucus make a lovely home for nasties. So I went with strict hygiene, HEPA air filters, all the Covid rules, and I got regular Covid tests before immuno anyway (I kept up with the lateral flows after the swabs got stopped.) Staying hydrated was important too, I was losing moisture faster than normal and the mucus is easier to shift if it's runny.

kind regards

Steve

[Nora1234 in reply to StevePr]

thanks so much Steve I really appreciate your response and it certainly gives us food for thought

[minustwothirds]

Hi Boo-Radley, read all the posts you had, nice to see other's sharing.

I had an op to remove my cancer from my right lung in Feb 2020, because of corona i was unable to have any chemo or other treatment until October that year, they put me on Immunotherapy but after 3 doses it went what has been described as toxic. this meant that it attacked my immune system causing major problems with my joints and bowel's, I have now got Immunotherapy Induced Rheumatoyed arthritis which is now treated with drugs, also along the way I got Colitis, thankfully that is sorted now.

I dont want to be the bearer of bad new's but just want to warn you that you have to be pepaired for the worst, and nobody told me that this may happen.

May I wish you the best of luck and hope all goes well for you.

Cheers

Dave

[Cockailschemocancer in reply to minustwothirds]

Hi Dave

oh I’ve had both of them - colitus is almost gone now but not the arthritis - apart from the Prednisone were you prescribed anything else as I’m back with the rheumatologist on Friday? Thanks Kerrie

[WineWhiskeyandme]

Hi Boo,Although I am not in the UK the treatment is the same. I was diagnosed in Oct 2019 Stage 4 NSCLC out look 18 to 36 months . I was put on immunotherapy (Pembro) side effects tiredness and constipation, also 12 treatments of radiotherapy to the main tumour. side effects redness like sunburn on chest and back. I am still on immunotherapy every 3 weeks and have just had my 49 treatment. C T Scans and chat with doctor every 3 months It takes me, if alls going well, about 2 hours in and out on the day of treatment . Weighting, check of blood results and general health check. 30 mins for the pembro 10 to 20 min for flushing and a cup of tea. No hair loss or loss of appetite. I can still do 10 miIe walks a couple of times a week and I enjoy going for a swim. I don't look like I have any sort of Cancer. Good luck with the immunotherapy it's a great easy treatment to take.

[sassassas]

HI Boo_Radley

Welcome to the club. Sorry you're here too.

My husband was diagnosed 2 years ago (stage 4 NSCLC) and had a full-on chemo combo (4 cycles) and two immunotherapy drugs (still having these every 3 weeks). He had slightly different drugs to the ones you're getting but v similar.

You aren't wrong - 'gruelling' describes the chemo well. However, he is now 'no evidence of disease' - NED - and we are so grateful that immunotherapy has been an option alongside the chemo. When it works, it is genuinely game-changing. You can read some of the different experiences people have here but for my husband, he has no physical side effects from the immuno drugs.

Wishing you all the best on your journey. xx

[nlg1405]

Hey, Pembrolizumab worked really well on my mum's NSCLC. It shrunk her tumours by 80% and kept them stable for 3 years. It did bring on arthritis, however they cannot be 100% sure whether this was completely the cause., however this did mean she had to stop the treatment before the course ended. If you are able to tolerate the full course, this could be really positive for you. Be aware though that once you stop pembrolizumab, even before the end of your full course, the nhs will not allow you to re-access it again. All the best, hopefully this treatment works well for you.

[Boo_Radley]

Thanks for all the advice everyone, it seems like everyone has a different story - goes to show everyone is different.

I'm hoping for a positive outcome, everything crossed. I guess it is just all about taking one day at a time, and persevering.

Thanks for all your help - your stories and advice are really helpful, and it's good to know I'm not alone!

Sending this to the big C from all of us. 😜

Here's to you cancer!

[Mazemaze]

Hi Boo,My dad (75) had exactly this treatment plan and is now on maintenance chemo - reduced dose and no more carboplatin.

He started in September. During the first four doses of the full strength treatment, he felt quite tired with a bit of nausea but everything was bearable. The main difficulty has been not wanting to eat as much as he has experienced a taste and texture change with food. So it's just been a matter of trying different foods at different times to combat this. Eat as much as you can, when you can.

My dad has had a positive response with his treatment with the tumour being reduced by 50% when checking 3 months later and his cough going away.

Good luck with the treatment. Power through. You've got this! 😃

[Boo_Radley in reply to Mazemaze]

Hi Mazemaze, I'm glad he's doing well. So far, so good. My appetite is not affected yet, and I seem to be bearing up well to it. I know it's early days, but taking every positive I can! Thanks for your good wishes, I like to think cancer picked the wrong woman to mess with! 😜

[Mazemaze in reply to Boo_Radley]

Hi Boo, Great to hear that and hope you continue with minimal side effects. Cancer really did mess with the wrong woman! Keep your spirits high and 💪stay strong😊 We will all fight it together!

[Boo_Radley]

We will, useless indiscriminate disease. It can do one! 😜