Lung and lymph node cancer

[Clarepar]

My mum has stage 3 bordering stage 4 cancer 😥. She was supposed to start chemo and radiation yesterday. The Dr wanted to see us just before. He informed us she cannot have Chemo as her Kidneys wouldn't be able to take it (she has kidney problems too). So for 6 1/2 weeks of Radiation everyday for her.. mon to fri. What is the likelihood of her getting through this? She is on 4mg steriods and has fallen down to under 7stone in weight. She is 63

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello Clarepar

welcome to the Roy Castle forum, I am sorry to hear that your mum has been diagnosed with lung cancer. It is understanable that you will be anxious and have questions about any further treament this is a good place to get first hand advice and support from people who have been through similar treatment.

It is very difficult to predict how anyone will respond to treatment and what types of side effects that will be experienced, we have a patient information booklet on Radiotherapy, this contains lots of information on what to expect and how to manage any possible side effects, links are below

roycastle.org/how-we-help/l...

documents.roycastle.org/Rad...

Do you have a lung cancer specialist nurse ? She will be able to advise on diet and might suggest prescribing some food supplements. I have added a link below to cancer research which has an area on managing diet problems.

cancerresearchuk.org/about-...

If you wish you can call us on our free nurse led helpline number on freephone 0800 358 7200

Kind regards

The Roy Castle Support Team

[jillygirl]

The Roy castle help line , have given you excellent advice. Like they say your lung cancer nurse specialist is one of the best sources of help.

May I wish you and your Mum all the best , and hopefully you will be on here again with good news. xx

[PaulaMog]

Hi Clarepar,

So sorry to hear about your mum.

This Friday I’ll be finishing 6 weeks of radiotherapy for lung and lymph node cancer. I’ll tell you my story and how I managed, in the hope that there'll be something useful you can take away from it to help your mum.

I am 49 and was originally diagnosed as T2N1M0 (stage 2 with hilar node) on 14th Feb 2017. I had tests which included a contrast CT scan, PET scan, CT guided needle biopsy, lung function test and blood tests to check kidney function (due to high blood pressure tablets).

I was told I would have VATS (keyhole) surgery to remove a 38mm tumour in my right lower lobe and the infected lymph node (3cm x 1cm), followed by concurrent chemotherapy and radiotherapy.

I ended up having a lobectomy via open chest surgery (thoracotomy) on 16th March, when they removed the right lower lobe together with the hilar node and all lymph nodes at stations 4 (above hilar node) and 7, 8 & 9 (below hilar node). One further node within station 7 showed microscopic signs of cancer, so my diagnosis was upstaged to T2aN2M0.

I started adjuvant chemo on 28th Apr and was due to have 6 sessions on a 3 week cycle but ended up only having 4 sessions as my oncologist was happy with my progress. I was on 2 drugs, pemetrexed and cisplatin, which took 7 hours to administer. The worst bit was the 5 days afterwards, when all I could do was curl up on the couch and sip water as I felt constantly sick and fatigued. I lost a stone during those 5 days but was able to put most of it back on before the next chemo. Thankfully they changed the cisplatin to carboplatin after the second chemo. That had it’s own side effects but they’re all manageable in the big scheme of things.

So, on to the radiotherapy. I'm having 30 ‘fractions’ over 6 weeks, every day, Mon – Fri. I started on 17th July and am due to have my last one this Friday coming. It depends on exactly where your mum’s cancer is, but with my lymph node involvement they targeted an area close to the oesophagus which has caused some temporary damage. I was told that it would be sore from about the third week and would be cumulative, which was about right, but that it will heal within 2 – 3 weeks of finishing the radiotherapy.

I’ve found that the acid reflux is the worst bit and if I can keep that under control then the soreness isn’t too bad. I’ve found that swallowing smaller amounts than normal (food and liquids) is less painful. The downside of this is that your dinner gets cold, so I warm my dinner plate up in the oven beforehand. If it’s something I can eat from a bowl then that’s even better as it keeps warmer for longer.

I don’t eat anything spicy, crispy or bulky. I pretty much live on yogurts, rice pudding, choc chip muffin with custard, protein drinks (try Complan or other food supplement), pasta and spuds with butter. I also can’t eat or drink anything too hot or too cold, although a cool drink or yogurt is very soothing. I also eat every hour or so as I can’t eat too much in one go.

Having said all that, I have managed not too lose too much weight, but do have to force food down sometimes as I really don’t feel like eating when it’s really painful. The most important thing is that your mum keeps her strength up, which means eating as much as she can when she can. She’ll also get really tired, but again that can be managed. The main thing with the tiredness is to get out and do some walking every day and then have a short nap in the afternoon.

I’m on 40mg Omeprazole, a numbing throat spray, an antacid and numbing oral solution to gargle and swallow, and Rennie when I need them. I tried Gaviscon but couldn’t get on with them.

I’m sorry if this post has gone on, but wanted to try and get everything down in case something in here would help your mum.

The main thing is to keep positive. I ticked off each day on a calendar and it has gone by really quickly.

I really hope that it works out for you and your mum and you both get through it ok. xx

[Clarepar in reply to PaulaMog]

Wow ! You really have been through it ?! Please god you get better? We are thinking positive but its so hard?!

My mum has T3 N3 M0? Not that i really understand what that is either.. i will be asking.

Thank you for taking time out and replying.. I couldn't even begin to imagine how you are feeling! God bless you x

[JanetteR57 in reply to Clarepar]

Hi Clarepar, sorry to hear about your mum but you're getting good advice on here. The T number relates to the state of the tumour which in this case is shown as T3, N equates to the amount of nodal spread (lymph), and the M relates to whether the cancer has metastised beyond the lung itself which in this case shows 0 i.e. zero spread beyond the lung itself. There is information about cancer staging on this link

cancerresearchuk.org/about-...

Do ask questions of your clinician and lung cancer clinical nurse specialist (CNS) if you have one as they will be happy to respond to inform and allay your concerns. If you don't have one, ask if you can have access to one to help you. You can also use the helpline for Roy Castle or Macmillan for you or your mum. good luck.

[Clarepar in reply to JanetteR57]

Thank you 👍

[PaulaMog]

No worries at all. I really do hope that some of it helps you to help your mum.

There are two other things I forgot to mention. One is to stay hydrated by drinking at least 1.5 litres of water a day, and the other is to make sure your mum moisturises her skin in the area where she's going to have the radiotherapy. I used E45 cream and haven't had any problems.

I know how hard it is to stay positive, and there are times when I just get overwhelmed and burst into tears coz I don't know how I'm feeling about everything, but I'm one of the lucky ones because my oncologist says that they caught it in time and the operation, chemo and radiotherapy are all curative.

This site has really helped me. Although this is the first time I've posted anything, I found it really helpful reading about other people's experiences. I would also agree with the Roy Castle Support Team post and the links they have given you. This together with the Macmillan site and Cancer Research all provide excellent information, along with an American site called Inspire.

God willing you and your mum get through this. My thoughts are with you both, so please keep us updated on here. God bless xx

[PaulaMog]

And last but by no means least, my husband has been my rock through all of this. I hope you both have someone you can talk things through with and have a shoulder to cry on when it all just gets too much xx