Rita and Charles

I haven't been on this page in forever and a day, and not sure what prompted me today.  It's been 515 days since I lost my husband, and life has gone on, but I look back at all of my whirling deverish moments of research………and wish that I had just held his hand more. My heart understands you, and I tell you this – hold onto each moment, touch, hug, be silent……….close the laptop and rest.  Start a shared page and just share information once, and write that you can't retell the story each day to all members.  When they want to help, tell them to send love.

My life and heart still go on, but this melanoma monster nearly killed me too and I suffer the aftershocks daily but it has made me a new person.  Hold back nothing, give everything you have and talk honestly with everyone about your heart.  You are not alone, he is still with you.  

Rita

My heart goes out to you, I lost my husband on February 1 and one week from tomorrow is the official funeral back East.  We live in CA and had a celebration of life, all a blur now, late February………like Shane, his brain so full the only thing that they could try was full brain radiation.  He died on the last day of his 10 day appointment, in our home, in my arms.  I hate this disease, and the pain it leaves behind, I wish you well in your new journey.  The road is so hard………..

Rita

My prayers are with you, I just popped in to see how all are doing – I still think of you all and pray for release from this horrible train ride of treatments and everyone lives to be old and gray.  Good luck to Jake and to you Kerri – you are amazing.

Rita

My husband uses edibles to assist with pain, even before Melanoma he had a broken back hip, et…..just really a lot of chronic pain. The BRAF combo elevated the joint pain, and marijuana seems to help.  Also, with nausea. We are under no illusion that it will cure his melanoma, but helping with pain and anxiety, feeling better………better that than narcotics.  That is our experience, 

Rita

My husband uses edibles to assist with pain, even before Melanoma he had a broken back hip, et…..just really a lot of chronic pain. The BRAF combo elevated the joint pain, and marijuana seems to help.  Also, with nausea. We are under no illusion that it will cure his melanoma, but helping with pain and anxiety, feeling better………better that than narcotics.  That is our experience, 

Rita

My husband uses edibles to assist with pain, even before Melanoma he had a broken back hip, et…..just really a lot of chronic pain. The BRAF combo elevated the joint pain, and marijuana seems to help.  Also, with nausea. We are under no illusion that it will cure his melanoma, but helping with pain and anxiety, feeling better………better that than narcotics.  That is our experience, 

Rita

So good to hear news of Jake, and at least for this very moment – stable. Vitiligo can be hard for people to "love" to get, my husbands, back, chest, arms and just a bit creep up his neck – but it was the MEK/Taf working………….so we'll take it.  Once you get used to it – polka dots are acceptable if it means you keep the disease at bay.  I don't have any Ipi experiences to share, Charles has been off meds now since June [ after being on MEK/Taf for 9 months until his side effects became too hard to handle]- his July scan was great, and now we are counting the days until 10/4 for the next one to see how he is.

It seems like a summer we all took a break and enjoyed where and when we could, until we need to get back in the fight. Day by day…………I think of you and Jake, hoping his bright future unfolds…………keep doing and fighting until the next new drug combo is found, stay alive to live.

Rita 

So good to hear news of Jake, and at least for this very moment – stable. Vitiligo can be hard for people to "love" to get, my husbands, back, chest, arms and just a bit creep up his neck – but it was the MEK/Taf working………….so we'll take it.  Once you get used to it – polka dots are acceptable if it means you keep the disease at bay.  I don't have any Ipi experiences to share, Charles has been off meds now since June [ after being on MEK/Taf for 9 months until his side effects became too hard to handle]- his July scan was great, and now we are counting the days until 10/4 for the next one to see how he is.

It seems like a summer we all took a break and enjoyed where and when we could, until we need to get back in the fight. Day by day…………I think of you and Jake, hoping his bright future unfolds…………keep doing and fighting until the next new drug combo is found, stay alive to live.

Rita 

So good to hear news of Jake, and at least for this very moment – stable. Vitiligo can be hard for people to "love" to get, my husbands, back, chest, arms and just a bit creep up his neck – but it was the MEK/Taf working………….so we'll take it.  Once you get used to it – polka dots are acceptable if it means you keep the disease at bay.  I don't have any Ipi experiences to share, Charles has been off meds now since June [ after being on MEK/Taf for 9 months until his side effects became too hard to handle]- his July scan was great, and now we are counting the days until 10/4 for the next one to see how he is.

It seems like a summer we all took a break and enjoyed where and when we could, until we need to get back in the fight. Day by day…………I think of you and Jake, hoping his bright future unfolds…………keep doing and fighting until the next new drug combo is found, stay alive to live.

Rita 

Prayers will be coming your way………try to not think of the day as it counts down, the hardest part stretches between scan and results time. Good luck…..

Rita

Prayers will be coming your way………try to not think of the day as it counts down, the hardest part stretches between scan and results time. Good luck…..

Rita

Prayers will be coming your way………try to not think of the day as it counts down, the hardest part stretches between scan and results time. Good luck…..

Rita