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Ireland1

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      Ireland1
      Participant
        Hi Gerry,
        When we first started out on this journey stage 2a / node negative – my husband had a full staging ct / PET which commented on localised small bowel thickening – it turned out to be nothing. I really hope yours does too. Just thought always good to hear of similar situations that did not end up being melanoma.
        Ireland1
        Participant
          Bubbles – just wanted to thank you for all your input on this board.  You manage to provide lots of evidence based information in user friendly posts and we’re very lucky to have you here.
          Ireland1
          Participant
            Thanks Celeste – that’s really helpful – your blog is fantastic.
            Ireland1
            Participant
              Amy – so many of us can empathise with what you’re going through.  First of all – keep reminding yourself this may not be melanoma – and even if it is – you, like many people may just require the lesion to be removed and nothing further.  This board is unfortunately skewed by those of us who have not been so lucky.   Many people with melanoma have surgical management – surveillance – eventually discharged and it never bothers them again.  I too get comfort from information / detail and researching so the place you’re at where you know nothing is so hard.
              I think you need to just keep bringing yourself back to the fact that even if it’s worst case scenario and melanoma – so many patients are never on this board because they have it removed and get on with their lives – I wouldn’t allow yourself to go beyond that at this point – you just need to know what you’re dealing with and take it from there.   Hopefully it will be nothing at all .  Headspace is a great app for mindfulness and might help you calm your mind down a bit.
              Ireland1
              Participant
                So sorry for what you and your Dad are going through.  This is the worst part – waiting for the exact diagnosis / extent of disease to be confirmed.  I imagine once you have the biopsy you will see the local oncologist quickly.  I think it would be important to try and clarify time frames for that and use it as a starting point to see what she offers.  She will at least be knowledgable and even if she can’t offer all the options you hope for – she will hopefully be able to discuss them and point you in the direction of someone who might.  With regard to U.K. – Larkin in the Royal Marsden seems to appear on lots of the immunotherapy papers – but I’m sure others in the U.K. will have more specific advice. The Macmillan website has a melanoma forum which might be helpful too as it will have patients throughout the U.K. – who might be able to give you advice on the best centres.  Wishing you and your Dad the best of luck.
                Ireland1
                Participant
                  It is so completely variable – hopefully you will be one of the lucky ones and not struggle with toxicities.  You do not need to have side effects to get a response.   The time frames on onset of side effects are so variable that I think the only strategy is a day at a time – savour the good days – and report side effects if they occur.  There are lots of graphs showing usual onset of symptoms but it really can happen within days of starting treatment – to many months after stopping it.  Diarrhoea in particular is one to watch and report!  I think the figures suggest half of those on the combination develope grade 3+ side effects – which means the other half have relatively mild manageable side effects – let’s hope you’re in that half.  And report anything that develops and it will be dealt with quickly.
                  Ireland1
                  Participant
                    https://www.esmo.org/content/download/124130/2352601/1/ESMO-Patient-Guide-on-Immunotherapy-Side-Effects.pdf

                    This is a great overview of potential side effects / frequency etc – it also gives you an idea of what treatment might be needed depending on severity so that you can flag symptoms early and ensure they get dealt with.  I’m hoping you get none of these – but I found it a super helpful guide.

                    Ireland1
                    Participant
                      Read your post and can empathise with how you’re feeling.  The majority of lung nodules are benign – but a history of malignancy such as melanoma, a new nodule since diagnosis of your melanoma (you may not have had precious chest X-rays) or larger lesions makes the risk of it being cancerous increase.  I hope that this will be a non melanoma related false alarm – there are lots of stories of those on this forum – particularly with lung nodules.  It’s so hard when something like this happens completely out of the blue – hoping you get this sorted quickly – it’s the not knowing is the worst bit.
                      Ireland1
                      Participant
                        Thanks Judi – your diarrhoea sounds like what my husband started out with – persistent but manageable – if only it had stayed that way for us.  Great that you were able to continue combination treatment.

                        it’s so helpful to read that you’ve done well with nivo monotherapy SRV – which is what we are going to be resuming following our meeting today.  It’s so easy to get hung up on combination treatment – but as with your colitis everything is a risk benefit ratio and reading your post has reminded me to keep perspective!.

                        Ireland1
                        Participant
                          What a rollercoaster threefitty – really interesting to read your experience of ipi after a severe colitis.  It’s all such a judgement call on the part of the oncologist – lots of the guidelines seem to suggest permanent discontinuation with grade 3 colitis (and absolutely with grade 4) but as you point out when you clearly seemed to respond to the ipi it was worth risking the colitis again and great that you and the oncologist were willing to brave it again.  Keep us posted on how you go.
                          Ireland1
                          Participant
                            Thank you both for replying.  I can’t even imagine how tough 10mg/kg must have been – you probably had quite enough in your system with two rounds at that dose.

                            I hadn’t even thought of a reduced dose Edwin or indeed nivo first and then returning to combination with ipi.  I think they’re likely to say we’re done with ipi but it would be great if a solution like yours was considered too.  Delighted to hear you’re 1 year NED.

                            Ireland1
                            Participant
                              Should say he had 2 x ipi/nivo – had mild diarrhoea until second infusion.
                              Ireland1
                              Participant
                                I am new to the forum and await some of the experienced contributors input.  I just wanted to wish you well next week – you’ve had such a rough road.  As you were only able to get one ipi/nivo treatment – I wonder is it hard to assess how you may have responded with more – and rather than a treatment failure you just need a chance now at a sustained treatment (such as nivo alone) to give you a chance to respond hopefully.  I hope you have a good consultation this week.
                                Ireland1
                                Participant
                                  Thank you Melwave and Ed.  Melwave – when you responded privately I presumed you did so for a reason and followed suit – always want to respect people’s privacy – but sounds like we’re all on the same page – this open discussion forum is how we all gain!  I’m very new to this but reading through threads has been so helpful!  It took at least ten minutes to find your private message Melwave :wacko: .

                                  Re lung – thanks for your input Ed.  As he went from having no previous lung lesions on CT imaging to now multiple the dermatology / radiology consultants involved  immediately referred to him being stage 4.  I think a solitary nodule might be less alarming but multiple (albeit tiny apart from the 9mm lesion) is more worrying.  The oncologist referred to things being “highly suspicious” but seems fairly fixed on getting tissue – until there’s tissue we can’t confirm stage.  I can totally understand his standpoint – he’s committing him to probably two years of potentially toxic treatment so you can’t do that on probabilities.  My worry is this is all taking more and more time (we had a failed first attempt at biopsy – this was round two) and the weeks are ticking by.   We meet with him again on Monday so hopefully we will have a plan.  Deep breaths!!!.   Thanks to you both for responding.

                                  Ireland1
                                  Participant
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