Sorry I am struggling!!

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Sorry I am struggling!!

This topic has 1 reply, 2 voices, and was last updated 3 years, 11 months ago by Mark_DC.

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- January 23, 2021 at 5:28 pm
- Quote
Rosiepup
Participant
Sorry folks, I know I’ve been a pain since last week, but I’m just struggling so much! Despite having been going through this hell since 2014, and all the trauma since then, this is the first time I can’t get out of the depths. 🥺🥺 My usual attitude is dipping terribly! What to do/where to go to get the right treatments for me! I know I’m probably repeating myself a lot! But my mind is still mince!🥺

My melanoma oncologist is/has been great but I’m struggling with the decisions made by the neuro team! My previous posts have all the details I’m soo grateful for the advice so far but I’ve never been in this situation before!
I’m trying to sort the information et al I’m sending to my consultant, so any specific questions and if you’re ok with it, can I let anyone that is online in the next couple of days see what are possibles? But input about what to send would be hugely appreciated!! 👍❤️

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- - January 23, 2021 at 9:35 pm
  - Quote
  Mark_DC
  Participant
  Hi Fiona – I understand that you are not in a great place, despite managing pretty well up until now. And am sorry for this. I think a recurrence would knock me out.
  
  In the other thread I mentioned James Larkin at Royal Marsden. I have not worked with him since I live in the states. Maybe MarkR has better ideas since he lives in the UK but my guess is he has private insurance.
  
  I dont know your case in detail (can you add to your profile – used to be possible, then its easier for others to read and understand). But it seems to be that they should do SRS and/or ipi-nivo and not cmpletely sure why they do not. i really hope it is not because the NHS (which I love but just needs money) doesnt want to pay or give you a second chance. Find out the reason. For me i needed 2-3 chances before lucking out.
  
  Beyond that there would seem to be intralesionals or TILS but dont think either really helps w brain mets (not sure abou TILS. Or find a trial. but before doing this I would encourage your providers to do SRS and ipi-nivo. And check w Larkin or some other melanoma specialist in the UK.
  
  I think you live in Scotland and not sure how far you are from London, and train during covid is not great, but if the NHS allow it then I would do it.
  
  Best wishes, Mark

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