Newbie melanoma sufferer

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Hello
I was diagnosed with stage 4 melanoma June 2022 & was sent home for palliative care, at one stage I was given two weeks to live. The cancer had spread to a long list of organs including my brain. Thankfully I have regained my strength, resumed immunotherapy and the cancer is for now, under control.
I am on Opdivo, and would like to know if anyone else has had tingling as a side affect.
Its not too painful, but it is overwhelming especially when its in my head and body at the same time. It tends to get active when I'm hot, for example when I am in the bath, or tend to sweat, eat hot food etc.
I cannot run, or do a light work out without the tingling sensation, it's like being bitten by hundreds of jellyfish.
Is anyone else suffering from these symptoms, and if so do you have any advice please?
It is getting worse every time I have immunotherapy, sometimes it affects me when I am just standing on a train, I have too immediately take layers of clothing off and drink water to prevent it creeping over my body.
  • Hi   and a warm welcome to the Online Community but so sorry to hear about your diagnoses.

    The cancer journey can be such a stressful and challenging time but you have done the right thing in reaching out to a place where you can ask questions and getting support from others who are on the ‘exact’ same cancer journey.

    The Community is divided into support groups (discussion rooms) so you can get the best support can I recommend you join and post in our supportive Melanoma support group. This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

    If you'd like to connect in with a group click on the (Bold) Group Text Link I have created above. Once the group page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."

    You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go.

    You could copy and paste the text from this post into your new post.

    The Macmillan Support Line is open from 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 where you can talk with someone about specific cancer and practical information, get emotional support, benefits/financial guidance or just connect with a listening ear.

    We also have our Ask an Expert section but do allow a few working days for a reply.

    We also have our Telephone Buddy Service where you can be matched with someone who understands what you're going through, and they'll give you a weekly call.

    Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and aim to give support to all the family.

    Do get back to me if you need further help.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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