Scary PET Results

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2/10/2014 1:32pm
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Replies: 6

Today we learned that the melanoma has spread to Don's liver and bones - this just since his last PET scan in December.

he is also getting his first ipi infusion today. Doc says it can be 25% effective! even against such an aggressive spread.

plans for radiation have been cancelled. PD-1 trial is closed.  Our specialist has mentioned biochemotherapy, but is concerned because of Don's age - 72.

i feel we are getting good attention and care - but that there simply is no clear solution. Has anyone with liver and bone mets had good results with ipi? I am looking for a dose of hope.  mm

MicheleM

Maureen038 - (2/11/2014 - 9:23am)

I'm so sorry you are dealing with this latest news Michele. I don't have any treatment advice, but I am sending prayers your way that ipi will work well for Don. Take care of yourself too as best as you can. Hugs!!!

Maureen

Michelem - (2/11/2014 - 9:26am)

Thank you, Maureen.  I am so scared I feel ill. He is dealing with it like such a trooper. Just hope the ipi will work for him, because I can't imagine life without him.

MicheleM

Maureen038 - (2/11/2014 - 9:41am)

Michele,

I know how agonizing and scary it is to watch your best friend and husband go through this journey. My husband has scans next week and I'm already a nervous wreck because he's been off medicine since December because of hemolytic anemia! I try to take it a day at a time. I am also on anxiety medicine which helps so much. If you are not sure about the treatment you can always email Dr. Weber at Moffitt, Dr. Michael Atkins at Georgetown or Dr. Rosenberg at NIH. They all personally answer their emails and may have different advice. For myself, I am attending a caregivers support group which helps me see I am NOT alone. This site is also wonderful because many people truly care. Please email me anytime at Maureen038@aol.com. Sending extra prayers your way!!

Maureen

Michelem - (2/11/2014 - 10:38am)

Thank you, Maureen! Wondering - where you are located? San Diego area?  We are in San Francisco, so seeing a specialist in San Francisco . . . I feel like we are getting the best treatment available, certainly in line with what I read here.  Just that one wants that definitive absolute answer.

MicheleM

Maureen038 - (2/11/2014 - 3:58pm)

Michele,

  I live near Washington DC. If you need advice on a west coast specialist, just make a new topic. We did look into a trial with Dr. Susan Knox at Stanford that combined ipi with radiation. I'm not sure if it is still a trial. Best wishes!

Maureen

Michelem - (2/11/2014 - 4:23pm)

Thanks, Maureen, yes, we have researched west coast specialists and are currently working with Dr David Minor in SF. Travel further would be a problem because of my husand's serious lymphedema.

MicheleM