Dostarlimab immunotherapy treatment

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I have been on the above treatment for 5 cycles now and am finding it difficult to find other people who are on it.

I am coping pretty well with minimal side effects, mainly tiredness and a bit wobbly on my feet sometimes. 

My consultant says he is quite happy for me to go abroad on holiday as long as I have good insurance.

My tumour has not shrunk so far with the treatment but I'm hoping for some shrinkage after my next scan in October.

If anyone has experience of long term Dostarlimab and its effects, I would l9ve to hear about it.

Thanks K

  • Hi  

    I don't have any experience with the drug Dostarlimab, but just wanted to pop on to suggest that you also post this question in the womb cancer group, which I can see you're a member of, as you'll then connect directly with people who are on it.

    I don't know if you've got your travel insurance sorted yet but, if not, you could have a look through the 'recommended travel insurance' and 'recommended travel insurance 2023-24' threads that are in the travel insurance group. They are full of recommendations from people who've got insurance.

    That's great to read that you're experiencing minimal side effects from Dostarlimab and I do hope you have a lovely holiday wherever you decide to go.

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  • I have insurance with Insurewith if anyone needs a recommendation. I found them really helpful and was able to talk to them on the phone which I found to be a bonus.

    Also they were very reasonably priced compared to others once they heard my medical history.

    It is good to know I have it here for stay cations too

  • Hi  

    Thanks for taking the time to recommend insurancewith. Although I haven't used them myself, I know they frequently get recommended in the travel insurance group.

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • I have only just started on it. I am taking part in a trial at UCLH. I will be having 2 cycles, 3 weeks apart and then hysterectomy is planned for September, followed by chemo and radiation if necessary.

    No significant side effects from first treatment apart from sniffles and slight cough. Also feel tired but I was feeling tired before the treatment. The day after the treatment I had no cancer pain whatsoever. Prior to the treatment I had been taking Tramadol 4 times a day. Now I'm not taking anything! I had asked my consultant if I would feel better after the treatment, and he said I might not feel any different. It usually takes a fews to kick in. So I am very surprised!