Hello

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Hi All

just wanted to say hello and share my story, I’m on a couple of other forums so sorry if people have seen me write already 

My beautiful mum aged 75 has been diagnosed with a pancoast tumour which has spread into her pulmonary lymph nodes she has a chest wall lesion too and her spine, rib, and hip are also affected 

she had a burning pain in the top part of her back which was the only symptom other than that she’s got no other co morbidities at all

we have been given a treatment plan of chemo consisting of Pembrolizumab
Carboplatin
Paxciltaxel

Just want to understand as much as I can really to help my mum she’s on her own as we lost my dad 6 years ago to bladder cancer and I feel like I’m living the nightmare again I’m the only child so all on me and have always been so close to my mum I’m devastated but trying to stay strong for her 

would like to hear from anyone on the same or similar treatment plan and with pancoast as I know it’s quite rare 

at the moment she isn’t too bad but struggling with much appetite and taking tablets which she cannot do as she has a phobia of swallowing them so having to take soluble pain relief I am speaking to gp about patches to help with the pain 

take care all x 

  • Sorry I can't help you but hopefully someone on here can xxxx

  • Hi there 

    thank you for replying I appreciate that I will update once mum starts treatment and hopefully people will relate to that x 

  • Hi hun,  I’m so sorry your poor mum has been diagnosed with this , it’s awful and effects everyone in the family and friends,  my mum Is currently having treatment she  has been having treatment  since June this year the same  treatment they are going to give your mum,   Yesterday was my mum’s 5th round they were only going to do 4 rounds of chemo and immunotherapy for 2 years , but because the treatment is working and thre oncologist is happy with how it’s going they gave her 5th round of chemo yesterday amd her immunotherapy, 

    since my mums treatment started in June she has lost about 7-10 pound in weight 7st 11 to 7st 5  , 

    my only advice is to get a thermometer and start doing your mums temperature every day a few times a day  to see what’s normal for your mum,  this is so important as this can dertermine any infection once on chemo / and can be caught and tested quickly,   

    my mum had her results Tuesday her cancer is shrinking she has a tuma in her left corner top lung and spotting on adrenal gland and spotting on rib / 

    if there’s anything I can help answer message me. X I kno this is awful , and your world has been flipped , 

    but there are lots of lung cancer survivors on amazing drugs that are doing there job,  medicines and treatment have come such a long way in the last few years ,  try and be positive I know it’s hard  xxx  lots of love x Nicole x 

  • Hi Nicole 

    thank you for replying and likewise I’m sorry to hear about your mum too 

    that’s such great news to hear how your mum has responded to treatment I really hope my mum has the same response too thank you so much for sharing this it’s what I needed to feel more positive 

    please do let me know how she goes and I will update you on my mum too all the very best thinking about you all 

    Katy xx 

  • I kno it is very hard to keep positive x 

    my mum still has her hair and she looked lovely on my birthday on Friday last week x. I did post a picture . But I removed it as my mum had not told anyone only her brothers and me and my sister and her partner, she doesn’t want to worry anyone else , 

    make sure your mum has plenty of meals little and often snacks. / / to keep her weight up / and plenty of fluids x 

    once treatment has started you will feel a lot more at ease x  xx thinking of u and your. Lovely mum xxxxx. Big hugs xxxx 

  • Hi Nicole 

    so mum is there now for her first round of treatment she seems upbeat and positive which is good!  Great news to hear your mum hasn’t lost her hair I think my mum is worried about this 

    How is your mum doing now? And how is she feeling?x

  • Hi darling x 

    hope your mum is ok, it is so scary as it’s the unknown, your mum be in there a few hours ,  it’s a shame no one allowed to go in with them, x  my mums hair has got thinner but not fallen out. Xx. My mum has short hair so it’s not very noticeable, my mum seems ok today,  

    usually with my mum her treatment is always on a Wednesday and then by start day she is tierd and Sunday she sleeps all day , but Wednesday they only have her 1 chemo and immunotherapy, instead of the normal 2 chemo , so she might not be as tierd . We have to just wait and see,  x 

    i hope your mum is ok sending u lots of love xxxxx 

    how are you coping tho xxx