maperny

Hi Celeste,

Good luck with the next 3 months!  You’ve got this and will, of course, come out swinging.

Maria

Dear Celeste,

I just checked in and have read the updates about the craziness you have been going through.  It really threw me through a loop to be honest.  I am so glad that the support from all the amazing folk on this forum has helped you through these difficult days, you have given so much love and support to so many people over the years including to myself and my beloved, Juan, who is no longer here with us.  You are the most amazing, courageous, smart, resourceful, resilient, cheerful, driven, detailed "embracer-of-life" that I have ever had the pleasure to come across.  I wish you a speedy recovery to get home and get back on with everything.  You are truly inspirational.

Maria

Julie, you are actually truly remarkable x

Thank you so much, Rob.  Adriana and Juan will be smiling today to know that Dr Glitza is not giving up on LMD.  Hoping and praying this is the start of chipping away at it.  

I do not come onto the forum much these days but my heart turned over when I read this post.  I am so sorry you are going through this.

my husband, Juan, was also diagnosed with LMD in his final months.  He had already been through so much and was not in a position to do the treatment offered at MDA but I agree with Rob, you need to get in to see Dr Glitza at MDA as soon as possible.  If there are no symptoms of the LMD yet (brain/spine impairment) then the potential for the treatment to work is much higher as I understand it.  A year ago, MDA was the only place offering treatment I believe and Dr Glitza was running the programme.  Hope you can get a plan together very quickly.

This has truly made me very happy to read.  My son and I lost Juan in April and this was a very hard year with so many losses for our community but I drop in now and then to see how people are doing.  Christmas is an emotional time but I am so glad I did come on the board just to read this post.  There is hope and there will be fewer and fewer losses, I know that, warriors like yourself and wonderful angels like Celeste give everyone hope.  Bless you and Happy Christmas

Maria

Rob,

i am so very, very sorry for your loss.  Adriana was an amazing fighter and it was her love for you and her family that pushed her to fight so hard.  You have provided us all a perfect example of how to care for a loved one.  You looked for every solution, supported her both physically and mentally and made sure that she felt loved every day she was with you.  You were open with everyone on some of the details showing how hard it is for a care-giver and of course, for the poor patient,  It is good to be open as it helps and inspires so many people and everyone feels like a big team in this together.

I know Adriana was very proud to have such a wonderful husband just as you were to love such a wonderful wife.

Today is the Memorial Service In Ireland for my husband, Juan, it is 2.5 months since he passed.  Although Spanish (and I am English), he found much joy over the years in this beautiful village and loved fishing here, so asked for me to bring his ashes.  All his close family and friends have come here to celebrate his life.

it has comforted me to plan this and make it as perfect for him as possible.  If there is something or somewhere special that you know Adriana would have loved (whether she told you or not, I know you know anyway), then maybe you could take your time to plan something special, it has been the best therapy for me.  You can do it in the months or even years to come, grieving cannot be rushed. 

May God bless you and all the family.  And Thank You, Rob, for all the support, advice and love you have shown to all melanoma sufferers and their care-givers on this forum.  You are truly a special man.

Maria

Oh Rob, my heart bleeds for you.  You are such an amazing care-giver and it hurts so much to watch our loved ones deteriorate.  I understand entirely why you needed to make this post and everyone is with you and supporting you.  

Take a deep breath if you can and try to find some peace in these last days with Adriana.  my thoughts and prayers are with you

maria

You are an inspiration, hope everything goes really well

Maria

So sorry for your loss, Janis.  This is so hard, I know.  Try to take comfort that you were an amzing support for Shane and he knew and felt that, you were there the whole way with him and he left this world bathed in your love.

Maria

Hi Scooby,

This is a long time I reckon.  i know you are in the UK so wait time is longer but I think this sounds long….I am  sure it is due to administration, etc.  If it makes you feel better and it would help by pushing them then go for it…  But try not to stress yourself any more than you already are.

Thinking of you

Maria

Love this photo!  You are both amazing and wonderful!  Awesome news on Adriana attending the graduation, that is incredible.  And the Los Angeles trip!  What a star!

Maria

Hi Jenn,

has the Dr confirmed the lesions are melanoma?  Wrong about too small if so.  You could start immunotherapy which actually is an approved treatment for stage 3 and stage 4 now.  I do not wish to scare you as you sound very pragmatic about this, but I believe the chances of immunotherapy working increase significantly if there is less tumour burden (maybe Celeste can confirm this?)

Are you with a melanoma specialist?  Have you been tested for BRAF status?

Good luck

Maria

https://www.aimatmelanoma.org/stages-of-melanoma/stage-iii-melanoma/treatment-options-for-stage-iii-melanoma/

Yes, the genetic testing looks for mutations and if you are BRAF positive then there are some targeted treatments for this that can be helpful.

You are at a very good centre as I understand it, maybe you could ask about adjuvant immunotherapy treatment as you have diagnosed as Stage 3 and It should be available.  Particularly since there is a potential you have something further brewing

Maria