NSCLC operated in March, starting che... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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NSCLC operated in March, starting chemotherapy on Monday

lucanus15 profile image

Hello, I'm new here. I'm about to start chemotherapy this Monday using Cisplatin and Alimta.

I had a 5 cm adenocarcinoma removed from my lung during an upper right lobectomy this March and have recovered well physically. My tumour was discovered 31/01/2019. It is apparently stage 2a and has not spread detectably. I am 42 years old and a mother to two young sons at 2 and 4 years old.

I'm not sure what to expect, how tired I may become and sick. According to my blood tests I'm already anaemic..

I'd be grateful to hear anything from anyone.

Best regards to all xx

18 Replies

Cislplatin is a tough but doable treatment. If you should develop neuropathy -a cold, burning, pond and needles feeling in your hands and feet let your infusion nurse or oncologist know right away

If you have time in the next couple weeks ask for a hearing test. Cisplatin is known to cause hearing loss. If you can document it it may make it easier for you to get hearing aides if you need them.

My hair only thinned. It never fell out enough to bother shaving my head. Eat lots of leafy greens while you can. Also, cisplatin will cause a metallic taste in your mouth. Use plastic utensils to help reduce that. Your tastebuds will be affected. Eat whatever you want. A balanced diet can be addressed when treatment is done.

Stay well hydrated. Take all anti nausea and steroid meds exactly as directed.

I’m grateful to learn that yours was caught early enough that you hey can hope to cure it. I pray they do.

lucanus15 profile image
lucanus15 in reply to Denzie

Hello Denzie, thanks so much for your reply.

I've had a browse on here this evening and keep reading things which are making me think twice about having chemotherapy. One thing I just read was one person saying that chemo upped the survival rate only by 4%. Other things I read were that adenocarcinoma is very slow growing.

There were no lymph nodes involved so maybe chemo would do me more harm than good. Then there could be things floating about, who knows. I really have no idea what to do!

I had a quick look at your profile and am happy to see that you have been winning for eight years! Many hats off to you!

Thanks again and best wishes xx

Denzie profile image
Denzie in reply to lucanus15

At 3cm a cancer creates its own blood supply. If a single cell was shed into the blood it can circulate for a couple years before attaching in the brain or other organ. There are 100million cells in a 1cm cancer that’s more than 500million chances for a cell to break loose and circulate.

The real difference is a 10% increase in survival. Not all adenocarcinoma cells are slow growing. Only the lepeidic type is certain to grow slow. Talk to your doctor or the oncology nurse to get answers. Also they can switch out the cisplatin for carboplatin. The difference is a few weeks longer survival with cisplatin but carboplatin has milder side effects. The Roy Castle Foundation has some excellent resources. If hope you reach out to them.

lucanus15 profile image
lucanus15 in reply to Denzie

Hi Denzie, thanks so much for your reply. The nurses and Doctor are always so busy that my questions daren't come out!

lucanus15 profile image
lucanus15 in reply to Denzie

Hi Denzie, are you about? It's just that you mentioned contacting someone immediately if I got pins and needles. I haven't had the whole duration but suddenly today after my fourth infusion I have pins and needles in my hands which has lasted half an hour. There's no one to call on a Saturday, that's crazy huh!? I don't know what to do. Why did you mention calling the nurse, is it an emergency do you think? Thanks in advance xx

Denzie profile image
Denzie in reply to lucanus15

This is something you want to mention to the infusion nurse when you go for your next treatment. Did they do the Cisplatin as they planned? Will they be doing two more rounds of treatment? It is not an emergency that requires immediate attention. They will monitor it or switch to carboplatin if they think it’s necessary.

My neuropathy issue developed after my second round of chemotherapy. I would take comfort in knowing it took this long to develop. But do mention it to the infusion nurse.

lucanus15 profile image
lucanus15 in reply to Denzie

Denzie thanks you've been so helpful. It came on suddenly and lasted an hour and a half, gone now happily. I'm reassured now. Yes they continued the Cisplatin, it was postponed for a week and by then my white blood cells were back up :D So my fourth treatment was this last Monday. I thought it to be the last one. I have a scan 13th August and they said depending on what they see there they will do more or not.

Thanks again for all your help and your rapid response.

Hope you are good yourself, all the best xxx

Denzie profile image
Denzie in reply to lucanus15

Thank you. I send hope that the Cisplatin works as well for you as it did for me. Don’t forget to mention the brief bit of neuropathy to the doctor or nurse. Which ever you see first.

Don’t let other people’s stories freak you out too much is the key. Everyone reacts to chemo differently, my oncologist said he knew of some 70 year olds who breezed through Cisplatin. Unfortunately I didn’t ( I’m 45 ) but don’t let that put you off. You need to be strong mentally more than anything and just remember getting through one cycle is one step closer to the end. Even though there’s no guarantee it’ll work ( sadly mine reoccurred) it’s still worth it, think of it as insurance. You’re in a good situation being stage 2 and much more likely than most with more advanced cancer to survive this. There is no avoiding the truth that it’s really tough, just take all the meds they give you and take comfort from those you love around you. Good luck x

lucanus15 profile image
lucanus15 in reply to BellaBe

Thank-you BellaBe for your reassuring words. I have my second cycle in a week. The first one went okay although I was very nauseous. After a week I was full of energy, hyper I would say, like I have been since my operation. I'm wondering whether I will be more tired as the cycles progress. Hope you're fine, thanks again for your input xx

RoyCastleHelpline profile image
RoyCastleHelplineAdministrator

Dear lucanus15

Welcome to the forum and sorry to hear of your lung cancer. Denzie has provided great practical advice and am sure you will find support and encouragement on the forum.

It is encouraging that it is stage 2a and the Chemotherapy will travel around your body to kill any cancer cells that may have broken off, even if none have been detected, it is as Denzie put it 'like an insurance'

Everyone responds differently to the side effects of Chemotherapy and if you fell well at the moment then that can be an advantage for you and hopefully you will manage the treatment. The important thing is to report any side effects early, take medication prescribed and surround yourself with plenty support, especially the practical things that are needing done with being a Mum.

Discuss any concerns you have with the lung cancer specialist nurse, if you do not have one you can request one either through your GP or specialist.

Sourcing information online (depending on what sites you got to) can sometimes have inaccurate details and confuse people, perhaps use the following sites:

roycastle.org

cancerresearchuk.org

macmillan.org.uk

This link will take you to our booklet on Chemotherapy:

roycastle.org/system/file_u...

This link will take you to information on Cisplatin and Alimta (Pemetrexed) from Cancer Research UK:

cancerresearchuk.org/about-...

The Maggie's centres provide emotional, practical and social support information, you can find your nearest one from this link:

maggiescentres.org

Their helpline number is 0300 12301801

Macmillan support can provide a patient grant to use for anything that you need, they also have a benefits team who can advise on work rights and incomes.

Their Helpline number is 0808 808 0000

Do talk to your family and friends on how you feel and ask for their help, people are only too pleased to feel they are doing something to help.

If you wish to discuss anything you can call us on our Freephone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

Thanks so much! xx

RoyCastleHelpline profile image
RoyCastleHelplineAdministrator

Dear lucanaus15

Meant to add that the anaemia you have they will monitor closely, as they will before each treatment. Sometimes treatment can be postponed depending on the blood results, do not be disheartened if this happens, allow your body to rest and recover to get through the course.

Be good to yourself and be encouraged that treatment for lung cancer has came a long way compared to 10 years ago, still a lot more to do but going in the right direction.

All the very best

The Roy Castle Support Team

Thanks so much everyone for you time, effort and input, this is very helpful. I phoned the clininc yesterday and they said I could chat with the oncologist pulmonologist on Monday when I go in for the treatment. I suppose it will be too late by then.

Someone also mentioned immunotherapy for my condition, it sounds good, I don't understand why I haven't been proposed it. I live in France by the way if that changes anything.

I have another question but it may be better if I put it on a new post, I'll try here just in case because you who have replied know your stuff :)

So this Monday I had a port placed. Last night it started itching, the itching is not skin depth, it feels deeper. Does this ring a bell to anyone, is it normal? It would make sense to me as part of the healing process but obviously I'm wary.

At times I'm feeling really anxious about starting chemotherapy!

Hope everyone is fine, wish you all a good weekend xxx

It can seem scary and now more is known about lung cancers (more being learnt all the time), different biological factors within some people's cancers mean that chemo after surgery is recommended. My adenocarcinoma (then called mucinous BAC) 7cm was removed in Dec 2010 and diagnosed in Jan 2011 but that specific type did not appear to respond positively to chemo so have not had it. I spent all day Friday at the NCRI clinical trials meeting with many of the top researchers/oncologists/scientists/physicians/nurses/surgeon/s discussing new and existing trials. The last few years have seen an explosion of treatments across Europe and immunotherapy has had promising results that were revealed at a conference (ESMO) in summer 2017. The result was that in the UK, immunotherapy is now offered as 'first line' for patients who fulfil certain biological criteria with their tumours. (PDL1 expression) Statistics/information on the internet is outdated and many of the recent changes in treatment have not caught up into the statistics that people read - so try not to scare yourself with outdated data/information. Ask your clinicians about your specific situation and don't be frightened to ask questions. It's your body and your life - important to understand what could happen. Good that you had surgery (not many are eligible for that in the UK as it's frequently found very late) so good luck with your follow on treatment.

Hi there

I was diagnosed aged 43 and had chemo with cisplatin / pemetrexed. I had four cycles with three weeks in between. I must say I didn’t find it so bad - I would have the treatment on the Thursday and by the Tuesday I would be back to doing things normally. It is cumulative so by the 4th cycle I was more tired but nothing drastic. I was eating and drinking normally. The steroids can effect your sleep but you only take them around the treatment days. I would go for it if offered.

I went on to have radiotherapy after that and then had surgery (removed upper right lobe) and was clear then for the next three years. I have had one recurrence in my neck which I had surgery on and radiotherapy and have been clear again since. It is now five years since diagnosis and next scans are next week so fingers crossed.

If you haven’t been tested for mutations that may be worth asking about as there are some targeted drugs if you have EGFR, ALK mutations.

Good luck to you and remember everyone reacts differently to drugs and their response to treatment is different xxx

Thanks ever so much Janey and Janet. I do know that my tumour was Pdl1 negative but nothing else was mentioned so I don't know whether it was tested for other things. How does it work - down to luck as to whether they test or not?!

As for the chemotherapy, I was given Neulasta and Aranesp. I'm wondering whether this is what is helping to keep my strength up. My young boys had a tummy bug too the day after my chemo which I managed not to catch despite being up to my elbows but it was exhausting having to deal with that.

I also had some quite scary palpitations and weak feeling one evening which prompted me to phone the hospital and they said not to worry unless it happens all the time. I didn't feel entirely reassured though since I hadn't actually been checked over. I'm still here for the time being!

Has anyone else been really energetic under these circumstances? I wasn't given steroids the following days. I can't help wondering whether the b12 injection has been good for me too, I may have been deficient for years. Anyway the neighbours are happy, in exchange for them giving me Reiki style healing I spent four hours strimming their garden on Thursday.

OK got to go for now as the boys need my attention (this is also why it's taken me so long to reply).

Thanks again everyone, I'm grateful to have found this site and its forum. All the best xxx

Thanks again everyone, it's great here on this site. Already through with the first two cycles. The nausea is remarkable. For a whole week I could not see my mobile telephone without wretching. This is because I had taken a photo of myself in treatment and knew it was on my phone. Amazing! Five days after treatment my partner had been to get me some things from the chemists and the simple sight of the bag from the chemists set me off wretching again. The anti nausea pills don't work because just the sight of the packet sends me off wretching from the memory of how sick I felt the first time.

I have also been plagued by constipation, to the extent of impaction I'd say, and it's pretty terrifying. I need to do something about that before the next session.

Five days after treatment however I'm back to my usual self and have lots of energy. I have had bouts of tinnitus, enough to make me think about how it would be to lose my hearing which did worry me and I consider myself lucky not to have any problems so far.

All the best to everyone and thanks again xxx

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