SCLC chemo then full brain radiotherapy

SCLC chemo then full brain radiotherapy

My mum was diagnosed with advanced SCLC with piturity gland tumour and lesions to the brain August 2016. Mum's prognosis wasn't very hopeful and was nearly refused treatment. Mum wasn't able to see at this point. Luckily treatment was given 6 rounds of chemo Carboplatin and etoposide and 10 sessions of 4 min full brain radiotherapy. Mum had great response to the chemo and was able to see again. Mum also had very little side affects. Radiotherapy started in January and all seemed good. Mum had scans that revealed her tumour and lesions had gone and the cancer else where had shrunk. Over the last week mum has been come very tired and started getting pains in her stomach. Over the last 5 days mum has had terrible pain in her back. Antibiotics was prescribed Thursday last week as mum was showing signs of a chest infection. Thinking at first the symptoms mum was having was due to the infection. The pain has become increasingly unbearable we had a trip to the hospital. Zomorph and Oramorph was prescribed. No X-ray was taken and a quick check up was done, but then sent back home with the advice to wait for a appointment with the oncologist and may be a pet scan. So now we're sitting here wondering what's going on?? Is this pain a side affect to treatment or could it be something else?? My dad is finding thing very stressful and emotionally draining. We're a supportive family and try our best to help reassure both mum and dad but lack of support and advice from mums care nurses is leaving us all in limbo. I would like to speak to anyone who has had anything similar or could shed some light on this.

9 Replies

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  • Hi

    I'm really pleased to hear that your mum responded so well to the chemo and radiotherapy treatment, the same as my mum.

    Following her chemo my mum had a scan which showed the cancer in her lung had shrunk and she started radiotherapy on her lung yesterday, ongoing every day for the next three weeks.

    Like your mum she had carboplatin and apart from feeling a bit tired she didn't suffer any horrible side effects. Then two weeks ago she started getting really dreadful back pain. She went to the doctor and to A&E and was given pain killers. Nothing seemed to work so an MRI scan of the whole spine was organised by oncology which she had last Friday. I took her for her first radiotherapy yesterday and her oncology nurse told me that the scan results were fine from their point of view. So I'm presuming they were just checking from a cancer point of view.

    I'm not sure why all of a sudden she has had such awful back pain but at least the scan put our minds at rest. I'm really sad to hear that you aren't getting good support from your mums oncology nurses/team. I have to say my mums have been brilliant, really on the ball with everything.

    Maybe it would be an idea to give oncology a call again about your mums back pain or get her GP to call them. It is a worrying time, even after treatment I think you can't help but wonder if any symptom is related to the cancer and, therefore, any symptoms should be checked if only for peace of mind.

    I can't really comment on the effects of the radiotherapy yet as today is only the second round of 15 lots, they did go through the side effects but it's still early days so it's back to the watch and wait.

    I do hope that you get some answers soon about your mums pain. After all the treatment she's been through someone should be monitoring her condition, sometimes you have to shout to be heard.

    Thinking of you all.

    Jacqui X

  • Hi Jacqui

    Thank you for replying. My sister got onto mums oncology consultant and a bone scan is being arranged. Some other treatment options has also been suggest. I have found tho if you don't push for answers your never know. Mum is feeling a bit better today and eating more so the meds have defiantly helped. Just hope mum doesn't have to wait long.

    I hope your mum responds well to the radiotherapy and doesn't suffer to many side affects. It's so frustrating just waiting and watching. May be the back pain could be a side affect from the chemo.

    Would be nice to keep in touch.

    Thinking of you also

    Sam xx

  • Hi Sam

    I'm so pleased to hear your mum has finally got somewhere and a scan is being arranged.

    Maybe the chemo does affect the bones, strange how my mum has had exactly the same reaction as yours, both suffering chronic back pain. I know the injections I had to give my mum after every chemo session caused bone pain, we were told they had to be given half hour before bed because of this, so it makes me wonder whether the back pain does have something to do with all these drugs?

    You're so right, it's awful to watch, feeling helpless, I've learned to be my mums voice, if she doesn't badger I do, unfortunately, sometimes it's necessary. We lost my dad two years ago so I'm extra protective of her, when they're feeling poorly or afraid they need reassurance.

    It would be lovely to stay in touch, it's comforting to know someone going through the same ordeal who understands your fears and how stressful this all is.

    Do let me know how your mum gets on with her scan, I hope she doesn't have to wait too long. And I'll keep you updated on what my mums GP has to say about the back pain and scan results. Her oncology nurse told me yesterday that her GP would go through the results of the scan with her, oncology just said there was no cause for concern from their point of view.

    Day 3 of radiotherapy tomorrow, it's all a worry isn't it but hopefully it'll be ok.

    In my thoughts and prayers.

    Jacqui xx

  • Hello Sammyd10,

    Welcome to the forum

    I am sorry to hear that your mum has been diagnosed with lung cancer, it is good that her response to treatment so far has been good with limited side effects. It is understandable that you are concerned about these new symptoms and the increase in pain, with the bone scan now arranged the oncologist may be able to give you some indication of the cause. As you can see from Reading-Jacqui response symptoms can appear suddenly and these should be investigated, I am sorry that you have not had much support from the medical team, do you have a lung cancer specialist nurse that you can contact they can often act as a liaison between your mum and the oncologist.

    If you wish to discuss anything your can call our free nurse led helpline on 0333 323 7200

    .

    Kind regards

    The Roy Castle Helpline

  • Hey, thank you for responding. We called an ambulance for mum last night as the pain was unbearable again. At one point mum had lost conscious. The doctor at the hospital was very good and had a X-ray done which came back clear and bloods came back fine. Extra pain relief was given.

    Mum's cancer care nurse wasn't great and only had spoken to her twice. We now go through her oncologist direct. She's good and always gets back to us

    Thank you for the advice and concerns

    Sam xx

  • Hi Sam

    I'm so sorry to hear that your mums pain got so much worse and that you had to call an ambulance.

    Good news your mums bloods and the X-ray were ok but have they booked an MRI for her? I only ask because my mums oncologist insisted on an MRI scan of the whole spine just to air on the side of caution.

    Fortunately, the scan was ok from a cancer point of view, unfortunately, it turns out she's got a bulging disc which is pressing on a nerve but totally unrelated to the SCLC which was a relief.

    I hope your mum is starting to improve. Today is one week of radiotherapy done, two weeks to go. I've just spoke to my mum as I take her to her appointments and she's feeling a bit down today. I find that really hard because I've been feeling really emotional this week taking her, putting a brave face on every day for her sake and willing her on, it saps the life out of you. So when she sounds down I put the phone down and cry because I feel so helpless but know I have to stay positive, at least long enough to get her through another session today.

    I do hope your mum is feeling better.

    Thinking of you and your family.

    Jacqui xx

  • Hey, mum still isn't great. This pain is certainly taking its toll on mum.

    That's great about your mums scan. Radiotherapy can be very draining and emotional. It must be 10x worse for those having it. As its one of the things that could keep them alive.

    It's good to cry and let all the emotions out. You use more energy and become more drained holding it in.

    My mum always says stay positive and find nice things to look forward to. It really helps to get through the bad days

    Much love to you both

    Sam xx

  • Thanks Sam

    Your mum sounds so like my mum, very positive.

    It's not often she says she's feeling down, but I could hear it in her voice today and when I asked if she was ok she told me. It must be so daunting for them all this treatment, and when I'm with her at the appointments I keep her mind occupied with conversation about other things while we're waiting.

    However, I've just felt so drained this week and so tearful at home. You know the worst part for me is seeing my mum look vulnerable, that's what I find hard 😢 It's hard to explain, just when I'm driving her to hospital she looks vulnerable and I hate it.

    I know the treatment is going to benefit her, just can't wait for it to be over.

    I'm sorry your mum still isn't feeling great, hopefully she will start to improve soon, back pain is debilitating. Now I can relate to that as I've had major spinal surgery, total neck reconstruction following a car accident, and I suffer with a degenerative disorder of my spine so am under pain clinic for life. The pain is physically draining, the medication takes your appetite away but so does the pain so it's a no win situation really.

    You're in my thoughts and I hope your mum soon feels better.

    Jacqui xx

  • Hey, I know exactly how you feel. Our parents have always been the strong ones and seeing them so vulnerable is heart breaking. I like to keep a happy spirit on appointments. I'm always the one that does silly things to keep us occupied. Mum and dad seem to enjoys my little craziness. We had a bit of a giggle the other day and for a moment things felt normal. Hearing both my parents giggle and laugh in that way was great. Something we've all not done for a long time.

    Oh know so you've had a rough time your self. Your probably worn out from your own troubles on top of your mums.

    Keep your strength up and stay positive

    Thinking of you both

    Sam xx

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