Metastatic Melanoma – combination immunotherapy?

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    • #25138
      sgibsoncsgibsonc
      Participant

      I was recently diagnosed with metastatic melanoma – and so began my journey into the healthy system… I had a groin lymph node dissection in May, and started combination immunotherapy (Nivolumab + Ipilimumab) last week. It has been a lot to digest for someone who doesn’t feel sick and/or have many symptoms. I have been told to be super vigilant with side effects, which has caused me to think everything is a side effect. I have tried to find stories of others to get a better handle on what to expect, but have found there’s not much out there.

      Does anyone have any experience with this therapy? Would love to hear about it, if so.

      If not – I enjoyed reading through these topics… made me feel like I wasn’t so alone in this fight. So thanks for that.

    • #25142
      Annette CyrAnnette Cyr
      Participant

      Hi there and thanks for your post. I am hoping someone out there who has been on the combination therapy will take the time to post their experience – it all helps, even though there are vast differences between one person to the other as far as side effects. Some have a lot, some have little. I was just emailing with a lady today who has had her first infusion and is having some itchy skin, which is normal. We had a lady that we profiled in one of our newsletters that made it through the combination therapy. Her story can be found at https://www.melanomanetwork.ca/about/patientstories/melanie-adams/
      I will also reach out to see if she can post or answer some of your questions. If you are interested in peer support, to connect with someone that has been through this, please let me know by sending me an email acyr@melanomanetwork.ca.

      Many people out there are just like you – you have metastatic disease, but perhaps a low burden of disease so are not really feeling too bad for having lousy stage IV disease. That is very hopeful as you can potentially get ahead of this before it has more opportunity to grow The human body is quite remarkable at managing our health and it does take a lot of disease in many cases to actually feel the impact. I hope you will do well on the therapy and not feel too many side effects. Generally it is the first few months, when you are getting the combination therapy that you have the most chance of experiencing significant side effects. Some do, some don’t, but never wait it out if you have fever, diarrhoea, or any of the significant ones they talked to you about. You have to stay ahead of the side effects and help your docs to help manage them. Some folks have had thyroid issues, which are quite common too. Hoping you will sail through this – get plenty of rest, healthy diet, and some light exercise if possible and plenty of fluids. All will help you while on treatment. Feel free to post as it will encourage others to do so as well.

    • #25211
      bethhartebethharte
      Participant

      Hi
      Not sure if you were given a print out information on both Nivolumab and Ipilmumab but if you have you can use the listed side effects to chart on yourself you might find it helpful Note any side effects you are experiencing that match the listed side effect of each drug. If you can, give them a value 1 for mild 10 for the worst. Note what is effective at what gives you relief, such as ; Tylenol, rest, hydration, fiber etc… If you don’t have a print out you can use drugs.com for accurate information. Doing this while on Nivolumab not only helps me predict “bad days” it helps me see any changes that can mean a problem. If your hospital is online you can also register for Mychart to follow your labs and know if they are in normal ranges. Some values such as sodium or calcium can help you direct your diet. If your hospital is not online with Mychart you can request a print out of your labs. I do highly recommend keeping a chart on yourself it not only helps you it will help your careproviders because you will have accurate documentation if an issue arises.

      • This reply was modified 1 year ago by bethhartebethharte.
    • #36267
      Cathy NevinCathy
      Participant

      Hello there, I have not been here in some time, but almost 8 years post diagnosis of melanoma, I am back! What I thought might be a pulled muscle causing shortness of breath and chest pain over a two day period, turns out is metastatic melanoma. YIKES, my recurrence is on my lower left lung. With this happening amid covid-19, it just adds to the fears I am working through every day.
      My oncologist had spoken with me about possible treatment, but I had yet to have a cranial MRI, which would then be the deciding factor. Thankfully that was the last of necessary testing and it was clear. I will speak with my oncologist again on the 20th. The one thing that never changes is the difficulty in the waiting in between everything else.
      The first time around seemed surreal enough, but this time everything seems that much more surreal. 🙁 I’m hanging in and hanging on though and somehow as far as the covid goes, at least the lockdown has me in the same boat as everyone else. Just keeping as busy and as well rested as possible in the meantime. Thanks for being here! …and NO, SgibsonC, you are not alone!

    • #36335
      Mary ZawadzkiMary Zawadzki
      Keymaster

      Hello @nevz84 thank you for sharing your story. Keeping busy and getting your rest are great ways of supporting yourself through these next stages of your journey. Let us know how your appointment on the 20th goes. We are here to support you!

      • This reply was modified 2 months, 3 weeks ago by Mary ZawadzkiMary Zawadzki.
    • #36372
      Cathy NevinCathy
      Participant

      Thank you Mary Zawadski, I very much appreciate your reply. Eight years ago this site was a great resource for information as well as meeting others who, while going through their own unique experience were here to help support and inform each other. That’s when I was first introduced to Annette and greatly appreciated her knowledge and support. I can’t believe this is happening again and I won’t lie, seems even scarier now in many ways.
      Take care and thanks for being here Mary!

    • #36397
      Cathy NevinCathy
      Participant

      …And so it begins. Next Tuesday I will begin treatment for metastatic melanoma of the lung; left lobe.
      While nervous about starting, I am also relieved to know everything will be underway. I had worried everything might be held up due to the Covid crisis. I know my being very diligent in isolation and taking care will have to carry on as it has been these last few weeks in ensuring I don’t become ill in any manner.
      I hope everyone is staying safe, keeping well and finding ways to keep your mind engaged in positivity. I know, at times so much easier said than done. Take care.

    • #36446
      Mary ZawadzkiMary Zawadzki
      Keymaster

      Thank you Cathy for sharing this update. Taking care of yourself physically and mentally right now is so important, staying positive like you said can make a world of difference but there will be ups and downs and that is completely normal. Spending time taking care of yourself and your needs key!

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