Pembrolizumab experiences...worried about my mum

FormerMember
FormerMember
  • 2 replies
  • 95 subscribers
  • 2262 views

My mum was diagnosed in April, I’m not sure what stage as we have never been told but she had surgery to remove it, it the metastasised to one vertebrae on her spine and the lining of her lungs. 
She was then started on Pembrolizumab which she is 3 doses in. 
She has had fairly minimal side effects but I feel things are getting worse. She was breathless to start with but this has got worse, she was walking a lot previously and now gets breathless from bending over. She keeps feeling like she needs to clear her throat (not coughing much), she went to the doctors and her throat was covered in a yellow type mucus. And she gets crackly type sound breathing when she lays on her left side. The oncologist sent her for a chest X-ray a couple of weeks ago and said the results were an area on the bottom of her right lung that looked like infection but as she didn’t have a fever they would watch and wait instead of giving antibiotics. She has also been prescribed anti fungal tablets. The thing is last time they said about an area on her lung from inflammation it turned out to be from more cancer. I’m completely in panic mode as I’m worried this is all happening because the Pembrolizumab isn’t working and things are progressing? Or is it the Pembrolizumab starting to work ? I’m really worried : ( 

  • FormerMember
    FormerMember

    Hi Mullac

    Sorry to read about your Mum. It is good you have spoken about your concerns with her oncologist. I do hope you bought up about the breathelessness especially when bending down.

    Usually when on treatment they have scan dates to check the response to it. After 3 to 4 there is usually a scan then. Do you have an appointment for a scan coming up? This is the only way or answer you will get that can reliably tell you if it is working. 

    As your Mum is not doing as much as before please ensure that they are fully aware of this and your worries to get them to keep their eye on the ball.

    I am sorry to hear you are worried and fully sympathise, I think we all wonder and worry that throughout.

  • FormerMember
    FormerMember in reply to FormerMember

    Thank you for your reply, it means a lot. 
    I haven’t directly spoken to her oncologist, unfortunately I haven’t been to any of her appointments as my dad has gone with her and I’m worried I wouldn’t keep it together if I went and the last thing my mum needs is me going into hysterics at her appointment. 

    I’m not 100% what my mum has told them, I know she told them she’s more breathless which is why I think they did an X-ray ? 
    My mum is very worried about anything that might make them stop her treatment so I feel she suffers in silence and gets on with it so doesn’t make them fully aware of things that are bothering her. As she puts it she’s still doing things just more slowly. 

    One of her letters says they will do a CT after 3-4 cycles, she’s due her 4th cycle in 2 weeks but we haven’t heard anything about a scan yet. 
    Think mums nervous as expected because this next scan will kind of be a decider of if treatment will continue and we will know if it’s doing anything. 
    I’m a bit confused as well about them just doing a normal CT as it wasn’t until the PET ct that the cancer on her pleura was seen.