Hello there - I have started chemo - 3 weekly. Had Cisplatin + Vinorelbine on Day 1, Vinorelbine on Day 8. Will start 6 weeks R/T every day with next chemo cycle. (Had originally thought was having surgery but too risky as tumour is near heart and Pulmonary Artery). Tumour is in Left upper lobe - completely collapsed lobe.
I was really, really rough for a week or more after main chemo. Very nauseous, very bloated tummy, very tired, terrible headaches, no energy, sleeping a lot. Has anyone else been through this? How did you vote? Any tips?
I am dreading dragging myself out of house for R/T the days after big chemo as felt so awful.
Hoping it may improve each time. Took all anti- sickness, tried to keep fluids up, ate as well ad I could but tricky for a few days.
Hi Rosebud22 I had the exact same treatment for NSLC stage 3 advanced, it was tough going if I'm totally honest my chemo dosage of cisplatin was reduced as the side effects were too much for me once that was sorted things were tolerable, I started my radiotherapy on my second cycle 5 days a week for 6 weeks it was quite tough at times, towards the end I felt really tired and just wanted to stay in bed. The side effect made it hard for me to swallow so was given oral morphine for discomfort and a numbing liquid so I could swallow food. Loved tubs of tice pudding and cauliflowe cheese anything that was smoth and made swallowing easierThis lasted a few weeks but things did improve and my food intake improved. 2 weeks after radiotherapy finished I started immunotherapy for a year durvumulab, once a month.
Thank you so much for your reply. I guess its a learning curve with how to cope with it all. I haven't started the radiotherapy yet but will get some soft foods in ready for the sore oesophagus and swallowing problems - used to love tinned rice pud - great tip!
I have a rare genetic mutation - MET Exon14 Skipping which means can't take Durvlamab or any targeted therapies or Immunotherapy. Only Tepotinib if I relapsed which is annoying. Have to see what scans show once treatment finished.
All the best with your treatment. And thank you once again for your help xx
Well done, lovely to hear of success stories after gruelling treatment. I am due to start SABR targeted radiotherapy on Tuesday 28th, thankfully it is only every other day for two and a half weeks.
I know what to expect regarding side effects with radiotherapy as I had breast cancer quite a few year's ago and had radiotherapy five days a week for six weeks, plus and extra three days of intensive radiotherapy. I too was extremely tired and had what can only be described as severe sunburn on the right side chest wall, also right up to my neck and axillary area. This is because the breast cancer had spread into my axillary lymph nodes so I had an axillary clearance. Long term effects of the radiotherapy was fibrous tissue in my lower right lung and bone tenderness in my ribs and clavicle, which I still have today. The consultant oncologist said unfortunately the long term effects are permanent.
Fortunately I can have the SABR targeted radiotherapy as my lung cancer is stage 1 at 3cm, it was found after I had a chest X-ray after a bout of chest infections at Christmas and New Year and then tested positive for Coronavirus in May which left me with a tickly cough. The side effects of SABR are (hopefully) a bit less than radical radiotherapy apparently so I am hoping I don't have the swallowing problem, but we shall wait and see.
Best wishes.
Hi there - have had radiotherapy and chemo for breast cancer too. This Cisplatin/Vinorelbine chemo seems a lot more toxic than breast chemo (FEC × 6 Cycles)
I coped well with breast radiotherapy - 4 weeks. I can't have SABR for my lung cancer because near heart and Pulmonary artery and veins. Will have to see how 6 weeks goes - had a few warnings of swallowing problems.
Hope your SABR treatment goes well.
All the best xx
Hi, thanks for your reply. I was told the opposite to you that SABR is the better option than the conventional direct beam radiotherapy as mine is close to the heart and pulmonary artery as well. The oncologist said the conventional radiotherapy could encroach on the heart by a larger percentage than the more directed SABR. Also the conventional radiotherapy would also encroach by a larger percentage onto my right side where I had the radiotherapy for breast cancer whereby SABR has a lower percentage.
Having said that, I've found different consultants giving differing opinions on the size of my cancer. The respiratory consultant gave a size smaller (25mm) than the oncology consultant (31mm).
At my local cancer centre they do not do SABR, apparently not a lot of hospitals in the UK do, so I am having to travel 50 miles away for it. Thankfully I can have hospital transport, which is an amazing service. I begin my first treatment on the 28th and my last will be 15th December, it will be 8 fractions every other day for 2½ weeks. Hopefully I won't feel too bad for Christmas with all my family.
Best wishes
Well - we must be twins!!! As I had R sided breast cancer too! So that is conflicting re the different Radiotherapy that we are receiving? My tumour is bigger so I don't know if that makes a difference. My R/t starts on 4 Dec for 6 weeks. L upper lobe mixed squamous and adenocarcinoma. Will see my Oncologist on that day so will ask re why I am not having SABR. As also had R sided R/T.
Next big chemo is 5 Dec..
Good luck with yours.
Thanks. I don't know the size of your tumour, but SABR is only used on cancers up to 5cm, but it is worth asking the Oncologist.
A good friend of mine in is the middle of her chemotherapy treatment, unfortunately it is only palliative as it is small cell advanced, inoperable and incurable. She's not doing too bad, no nausea just tired, her hair fell out within 10 days of her treatment, but on the upside she can now breathe again. The hospital discovered it after admission to hospital for a pleural effusion, she had litre and a half of fluid drained from her left lung and the upper lobe was collapsed. The oncologist said surgery was not an option as it was too large, also surgery is usually never performed on small cell cancer for some reason. She now has no voice as the cancer is compressing a laryngeal nerve which in turn has paralysed her vocal cords. The hospital now has to decide whether radiotherapy will shrink the tumour enough to get her voice back and generally make her more comfortable.
Best wishes, onwards and upwards
My tumour is 5.5cm with cavitation so may be just a little too big for SABR - but will still ask as good to know.
I am sorry to hear about your friend's problems - there is always someone with bigger problems than one's own. I believe small cell lung cancer is more aggressive. I hope she gets her voice back - that must be so distressing for her.
All the best to you with your treatment. And hope you enjoy Christmas with your family - lovely to have them near ️
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