Mucosal melanona

Hello Parklands, welcome to this group.  I'm quite new here but all seem very friendly and supportive.  I saw you'd had no replies after a day so just thought I'd say hello to you. I was diagnosed around the same time as you but with a superficial spreading mole on my right arm plus lymph node involvement in the axilla.  I'm now on three weekly Pembro.

It's certainly a rollercoaster of tests/waiting for results/ emotions isn't it.  I had scan initially before the WLE and SLNB them more when the oncologist took over my care so the upcoming ones are the first since starting treatment. So far mine have all been clear but my next one's are on 20/12/2021 so I'm looking at the new year for results. Not a good time to worry re results!

It's only natural to be anxious about the next scan results hon as that's the info the docs base treatment upon.  I won't say don't worry because it is going to happen to us all. Avoid Google and stay focused on looking after yourself, eat and drink healthy and if possible adopt some distraction strategies for yourself 

Take care, fingers crossed for you x

Hi Alottment lover

Thank you for your lovely reply. I too have my next scans on 20/12/2021. This is the part I fear the most. I Google everything and feel worse for doing so. I have a very supportive family and hope my scans bring good news. I truly hope the same for you.

I will be thinking about you. All the best for your results too

Take care also

Parklands xx

Parklands, no googling!

The thing is that googling doesn't tell us what our results will be, it just says either positive or negative things. The statistics can be frightening, as a nurse I'm interested in these kind of things but I can stand back most of the time and not apply them to me.

Most of the time.  If I'm very honest with you then I'll say to myself- I'm not ready to die yet and so I'm going to live, no suspicious  lumps on my scans!

I swerve between (a)coming across a song I could add to the party tape for my wake and (b) sitting in s sobbing, soggy mess crying for myself and (c) planning my alottment for next year and continuing my application form for the MA I really want to do.

As long as we don't keep all our emotions inside then I think we'll get through.  I'm pleased you have a supportive family, we do need people who care about us to be there.  Snap regarding the scan date. Scans should be banned just before Christmas.  There's no way results will come through so we've got to find a way through the festive season without knowing!  Aarrgghh!   

Take care xx

Hi Alottment 

ditto to the emotional roller coaster! Nice to see how other people actually feel going through this.

I am also a nurse but had to stop working as the Pembro gave me some fatigue but also irritated my asthma so always chesty and with covid not a great combo.

scans before Christmas is not ideal for sure then having to wait for the results, will you get them between Christmas and NY or only after NY? I have mine in January.

wishing you both all the best with your scans and results x

Hi, I have mucosal melanoma and my tumor is aggressive . I had ipi and nivo and then just nivo which worked until only recently. Even with the same cancer everyone is different and respond differently.

I think you will find everyone here has the same fear around scan time and the waiting of results. Hope all goes well for you .

Thanks Jazz5,

It is a fairground ride but without the nausea thank goodness.

I really don't know when the results will be ready. Obviously I want them asap before Christmas but only if they are good!  I think I can get through Christmas and New year with no results, just keep busy and eat lots! 

Good luck with your scans too Jazz5   and enjoy the festivities x

First time I saw mucosal melanoma pop up on a post here when I searched for something else. My husband was diagnosed March 2021 with sinonasal MM. Wondered how things are going for you - my profile shows our journey.