Hi everyone. I’ve been meaning to join this group for a while, finally done it!
I was diagnosed with stage 4 lung cancer in October 2023. The only symptoms I had were a sore hip. Turns out my hip was okay, but the cancer had spread to the top of my femur (and elsewhere). So I was given a total hip replacement which cut out the weakened bone. During 2024, I had 4 rounds of chemo, followed by about 5 rounds of maintenance therapy. I know everyone is affected differently, so I didn’t really understand how well my body was reacting. Each round of chemo put me in bed for about 5 days which I assume is ‘normal’.
I had to stop the Pemetrexed chemo because my kidneys were affected. I was offered different drugs, with unpleasant side effects, but was also offered radiotherapy to my lung tumour when I had a second opinion from the Royal Marsden. I had a short course of RT (one week) and all seemed fine until I went downhill quite dramatically. My lung had become inflamed from the radiation (Radiation Pneumonitis). Steroids were offered and things improved. I’m just trying to drop the steroids because they affect my sleep, and I’m not sure if it’s a good idea to stay on them for long.
I have a CT scan later today which should show the effect of the RT. Naturally I’m apprehensive.
The big issue for me is: what do I do next? There may be various options but I believe it will boil down to two options: restart chemo with different drugs…or call it a day and let nature take its course. I currently favour the latter, on the basis that more chemo will be grim and any life extension I achieve may not be of high quality.
I would be very interested to hear how others approach this. Also, any views on continuing with the steroids?
Thanks for listening.
JonnyB
Hi JonnyB welcome to the group. You have certainly been through a rough ride to get to this point. I can fully understand the apprehension you are feeling about the scan today, but please do not underestimate the radiotherapy. It can be a very successful treatment, I myself had very good results from radiotherapy alone. I can understand the effects of the steroids are worrying for you, and yes it is not good to be on them for a very long period, and your medical team would not want you being on them too long, but if they are needed at the moment for your lung Radiation Pneumonitis then I would continue with them. I wouldn’t be weaning off of them before speaking to someone in your medical team first.
You don’t say how long ago the radiotherapy was, but radiation stays in your body for quite some time after the treatment has finished, so this scan today may not give the full results of the treatment. My tumour continued to shrink during the first 12 months after my treatment had finished, with the largest result of 50% shrinkage being at the 3 month point.
As far as further treatment options go, I don’t think you can decide until you know what the options may be. For the moment concentrate on the scan and recovering from the radiotherapy. I hope it goes well for you today.
I had 5 days of radiotherapy. My tumour was in my bronchial airway and so I was struggling to breath. But by the end of day 5 I could breath quite normally because the tumour had started to shrink already. My side effects I felt build up in my body for about 7 weeks, where it peaked, and then I felt myself coming back down the other side of the hill. So it was about 4 months in total, so with your Pneumonitis I wonder if you are peaking and about half way through side effects.
My radiotherapy was 10 years ago, and I am now experiencing new effects from it! I have nerve damage on my back, which causes pins and needles which are quite extreme at times. My oncologist said this is Radiation-induced neuropathy.
I know exactly what you mean about people’s reactions. I have lost a lot of friends over the years. Before my diagnoses I was a bit of a party animal. I had a huge social group and was out every weekend. After my diagnoses the invites slowly tailed off, the more I couldn’t go because I was too ill, the less invites I received. But so did the phone calls, texts etc. One “friend” even said to me “ I thought you were over all that” as if anyone is ever over getting a cancer diagnoses!
Hi, welcome to the forum.
Bit of a roller coaster this cancer thing isn't it? I am sorry to hear what you have been and are still going through.
I have had cancer twice, first one right sided breast cancer 35 year's ago.....surgery and radiotherapy did the trick. Second cancer diagnosed in August 2023, left upper lobe adenocarcinoma. I just had radiotherapy alone, two and half weeks every other day, so eight sessions in all....last treatment 15 December 2023. Three follow ups later and everything is looking positive, shrinkage going well and no dodgy activity.
It's a shame about your pneumonitis, unfortunately that can happen. I have a small area of fibrosis in my lower right lung due to the radiotherapy I had for the breast cancer, but I have no symptoms from it. I had a bit of inflammation in my left lung soon after my radiotherapy in 2023, but thankfully it settled down without the need for medication.
Very best wishes to you going forward.
PS...I know what you mean about different friend's attitudes.
Ann 
Hi Chelle
Regarding your post-radiation neuropathy, I have just started to have the same, only in my neck radiating to my shoulder, down my arm and into my fingers, no pain just pins and needles. I still have neuropathic pain in my right side from the breast cancer radiotherapy, but that is like an electric shock that happens in the base of my skull and right down the arm, it's few and far between now, but will always be there. The oncologist at the time said, when I had a complete axillary clearance because the cancer had travelled to my lymph nodes, nerves and tendons where damaged and unfortunately it is lifelong, so beginning now on my left side is a double whammy, but hey ho! I will just get on with it.
Regarding losing friends when diagnosed, I know exactly that. My first cancer diagnosis for breast cancer was a shock in itself, at the time I was 41. I had one friend literally cross the road when they saw me out walking. One time she couldn't escape me as we where both in the same shop, I just approached her and said "it's not contagious you know" and walked away. Also friend's who where doom laden with their remarks.
This time round with the second cancer, I have had the usual remarks such as "you are tough, you will be fine", some don't even bother acknowledging it and skirt around the issue, a few have said, "I will call in for a coffee and chat", but never do. To be honest it doesn't bother me now, I am ever the optimist and now consider them my fair weather friends and all contact from them have stopped.
Since my diagnosis I have made two new lovely friends, who at the time I just thought of them as neighbours as they live in the same road as me. One of them has just been discharged from follow up five years after having breast cancer and the other one had a cancerous kidney removed and is half way through through post-op treatment with immunotherapy. They too have lost friends and had the usual generic remarks. When they heard of my diagnosis they knocked on my door and wished me well and told me about their cancer and how they are getting on. Now we get together and have a chat and a laugh, and 99% of the time there is no chat about cancer.
Ann
