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Metastatic nodules in Lung, Starting Treatment

Tiggy66
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Hello everyone, a little background for you, I was diagnosed with Kidney cancer in 2018, had left kidney out with no treatment necessary afterwards. Roll on to 2022 they discovered the lung nodules I had that they thought were benign, were indeed cancerous coming from the original kidney cancer. On the 13th May I will be starting treatment, it's the ipilimumab/nivolumab combo, I am naturally feeling very apprehensive as the side effects can be very serious, however I feel positive it's the right decision for me! Is there anyone been through this treatment that can offer any words of advice on how to cope with the side effects?

Thank you Blush 

  • FormerMember
    FormerMember

    Hi  

    I'm sorry to read that your cancer has recurred. I noticed that your post has not yet had a reply. I have a different type of cancer so I hope you don't mind me replying. By responding to your message it will place it back at the top so that it may be seen by other members of the group. I don't have any experience of the types of drugs you mention so I hope you get more replies. Best wishes for your treatment.

    A x

  • Hi - I see your post was from 6 months ago. Can I ask how are you doing? Did you have the treatment? My husband has just had his first cycle of the same combo for metastatic lung nodules too.

    thanks 

  • in reply to Pony14

    Hi Pony14, Yes I had the 4 infusions of ipi/nivo, after 2 infusions I had unrelated gallbladder/stones issue so it was another 8 weeks before I could resume treatment, which I'm happy to say I did get the final 2 infusions! I was very lucky and had minimal side effects, just had my results from my latest CT scan and I've had shrinkage on some whilst the others were stable...most importantly I had no growth!

    I wish your husband well with his treatment.

  • in reply to Tiggy66

    Thank you for the reply. Glad to hear you are having success with treatment and wish you the best. 
    So far my husband has said he has felt short of breath sometimes which I was told could be a side effect due to inflammation, he has had swollen lips like an allergic reaction and extreme tiredness. Did you have similar effects. Great to speak with someone with similar experience. 
    Glad to hear you had minimal effects. Are you now on Nivo maintenance? 

  • in reply to Pony14

    Hi, all I had was mild diarrhea and nausea, after the last infusion I did get joint pain amd muscle stiffness, but that has now subsided, so no I dodnt get the shortness of breath, but everyone reacts differently to the treatment. Yes in November I am starting Nivo maintenance.

  • in reply to Tiggy66

    Thank you for getting back to me. Fingers crossed for you that it remains minimal side effects - wishing you the best for November. Keep us posted Fingers crossed

  • in reply to Pony14

    Thank you, I will and all the best to you and your husband.

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