Hi everyone, just hoping to hear some stories of others who have been through or experiencing something similar with a family member or themselves. My mum is 54, before now has been fit and active. About 12 weeks ago she had sickness and diarrhea, we didn't think much of it but about 3 weeks later she was still really poorly, losing weight so went to the hospital. After weeks of antibiotics and countless tests the doctors were confused as her infection levels were getting higher. She had now developed a constant fever too. After having an xray, ct scans, pet scan and 2 biopsys she has now been diagnosed with advanced NSCLC. She has been in hospital for over 9 weeks now, having blood transfusions, she has had a syringe driver in her leg for anti sickness which has helped alot and steroids which in my opinion are responsible for stopping the fevers which are caused by the cancer itself. She now has high blood sugar as a result of the steroids. After our first oncologist appointment this week, she has been booked in for 4 cycles of carboplatin, pemetrexed and pembrolizumab which is then reduced to just the pemetrexed and pembrolizumab for 2 years, starting next week. It's been so hard watching her health decline so rapidly over the last 2 months and would love some insight on what to expect symptom wise from these treatments. The dream is that once she starts treatment some of the side effects from the cancer itself will start to subside but I don't know if I'm just kidding myself. The hospital are thinking of discharging her soon which we are really worried about as she has needed such constant care since being there. They are weaning her off the steroids, which I worry that the fevers will return and then stop her from having her treatment as they will fear she's got an infection but it's caused by the malignancy itself and also taking her off the syringe driver to see if she can handle oral anti sickness now. She has had a much better 10 days since being on both, she's very tired but managing to eat and I'm just so worried that they will take her off these things, send her home and she will go downhill again. We've waited such a long time for her to start treatment and really don't want it to be delayed. Thanks for any responses, wish everyone well x
Hi Hopefulx I am sorry to hear about your mum. I can understand how terrifying all this must be for you. My journey is different to your mums, and I haven’t had chemo, so I cannot help with that unfortunately.
I know how apprehensive you must be that they are stopping the steroids, and her possible discharge, but try to think of these as a step forward rather than a step back.
Can I also suggest you join the Family and friends forum and the Carers only forum where you can connect with other people who are in a similar situation to yourself.
I hope the start of your mums treatment goes well, please let us know how she gets on.
