Surprise phone call

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Yesterday I had my usual blood tests at my surgery, before having my immunotherapy treatment on Thursday. All of my blood tests have been 'normal' for a year. In the evening, I had a surprise phone call from one of my oncologist's team, to say that my platelets count is very low. They cannot understand why. 

So, instead of going to the hospital for my treatment tomorrow, I'm to go there today, for further investigations and possible treatment. I'm not sure how long I'll be there for!

If it turns out that my cancer drug, Novilumab, has caused this problem, then I guess it will be discontinued. It has already caused damage to my pituitary gland, so I'd actually be quite happy if I can't have it anymore!

Has anyone else had a sudden unexplained drop in their platelet count?

Will keep you updated. I am feeling perfectly fine! No symptoms of anything being wrong.


  • Sorry to hear this  I hope all goes well for you today x 


    Try to be a rainbow,in somebody else's cloud
    Maya Angelou

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  • Hi Candysmum

    How have you got on today, any news on your situation.

    Fingers crossed for you


  • Hi Chellesimo and Hamhat

    I was kept in the hospital overnight, and came home a couple of hours ago. I'm feeling OK, not unwell, but very puzzled!

    My platelet count was monitored whilst I was in hospital, and it will continue by having blood tests at my local surgery.

    My oncology team have had discussions with the haemotology consultant, but nothing has been decided for definite about how to proceed. I will be having an urgent out-patient appointment with Haemotology, where they are likely to do a bone marrow biopsy....which I am dreading, frankly!

    Their usual approach when dealing with low platelet counts is to zap you with IV steroids, but as that has caused me some awful 'mental health' issues back in December, I have refused this as a treatment, ever again. The hospital were sympathetic to my standpoint, but it doesn't leave them many treatment options.

    We are basically in a 'wait and see' situation now. If my platelet count rises, they will simply monitor me. It looks likely that I will not be able to continue with my cancer treatment, at least for a month or so, but this isn't definite.

    What is very clear, if this really is a side effect of Novilumab, is that it is extremely rare! I will post again to see if anyone else has experienced this. None of the oncology team at the hospital have come across this happening, but I'll have to wait until I can speak with my consultant to enquire further. 

    I'm glad to be home again, surrounded by dogs and husband, and looking forward to a long soak  in the bath!

  • Hiya

    Great to hear you are back home being taken care of with loves and licks I'm sure the dogs are pleased to have you home.

    As far as treatment goes it looks very much like a wait and see situation, don't let this get you down, they will get some answers for you I'm sure. For now focus on being well so when they have figured out next steps you will be well enough to start treatment immediately.

    Have a good bank holiday sending you a hug


  • Ta! In need of hugs at the moment! planning a restful weekend. Hope weather is kind to us all. :)

  • Sorry I’ve only just caught up with this thread. That is very puzzling CM (hope you don’t mind me calling you that? I do hope you get some answers soon and that you are enjoying the sunshine 

    Jac x

  • Hi Jac

    Yes, it is puzzling! I'm really in the dark about the cause of the drop in platelets, as everything has been ticking along nicely! I'm presuming, behind the scenes, that my oncology team in Edinburgh are doing some asking around, to see if other Nivolumab patients have had this happen. At least, I hope they are!  As far as I know, other possible causes have been ruled out.

    Apart from a 'blip' on Saturday morning, I've felt OK, and this morning I'm back to what might be called normal!

    I'll just have to wait and see what happens next. Having another blood test tomorrow to see what the platelets are doing. Apart from that, it's a waiting game.

    In the meantime, I'm getting on with doing my usual stuff, and trying not to be concerned about it. My dog Candy is having an op at the vet's tomorrow too....yes, it's all happening! I'm more concerned about her than I am about me. It isn't a major problem, so I'm assuming she'll be OK.

    Thanks for asking after me. I'm going to phone Kidney cancer UK to see if I can get more info about this, but it being a bank holiday I'll probably leave it till Tuesday.


  • An update! First, my dog Candy is now sporting a new look...a stylish black polo neck tee shirt! She had a cyst on her neck which was removed yesterday, so she can't wear one of those cone things. She has taken to wearing the tee shirt without any fuss.

    My blood platelet count has gone up from 47 to 120! Good news, and going in the right direction.

    I have an appointment with Haematology tomorrow afternoon, for further investigation.

    Will keep you posted!