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Aggressive Digital Papillary Adenocarcinoma with lung metastases

Margo12
Posts: 29
Joined: Jun 2010

I have posted elsewhere on this cancer (a type of sweat gland cancer). This is my diagnosis and I am seeking others who may have experience with this entity. I am always looking for the experience of others: treatments, cancer centers that may have particular expertise etc. etc. If you or someone you know/ care about has or had this condition, I would appreciate hearing from you. Happy and Healthy New Year to one and all!

Beckymarie
Posts: 358
Joined: Aug 2009

Margo...an update on my friend, he was encouraged to have radiation on the finger and area where the tumor/cyst was originally found. He has declined to do this as did not seem to be any real benefit to doing this. He will be followed up by his oncologist and take a wait and see approach. Hope you are doing okay and wish you a peaceful and hopeful New Year.

Margo12
Posts: 29
Joined: Jun 2010

Thanks for your reply - hope all will go well for your friend. Happy New Year!

Beckymarie
Posts: 358
Joined: Aug 2009

Margo,

Checking in to see how you are doing?
Becky

JuliaM82
Posts: 2
Joined: Feb 2012

Hi Margo,
My friend has this exact same diagnosis, with lung metastases and all. He got it last week, in Seattle. He goes in for biopsy/amputation of the finger on feb 15th. How are you doing?

Cover1
Posts: 3
Joined: May 2016

My husband (age 50) was diagnosed with digital papillary Adenocarcinoma with Metastases to the lungs.  His oncologist started him on chemo right away!  Radiation was out othe question...studies have shown radiation causes this cancer to grow.  After 8 months the tumors are stable with no growth or spreading.  I would like to hear how others are doing.

thank you!

rimo89
Posts: 1
Joined: Jan 2018

I was diagnosed with Aggressive Digital Papillary Adenocarcinoma at the age of 32, back in 2012.  I'm currently 36.  They found it in my fourth right toe and my right groin.  The toe was amputated and multiple inguinal lymph nodes removed from my groin.  I would say that every several months another small "pea sized" lump would appear throughout my right leg, typically in the ankle, lower leg, and behind my knee.  These were all surgically removed as well.  More infected lymph nodes were removed from my groin last year.  I still have an infected node deep behind my knee, near an artery, so they decided to try immuno therapy with a new drug Keytruda, aka Pembrolizumab.  I've been taking this through an IV for about 45 minutes, every three weeks, for a few months.  It took some time to get approved for this drug because there isn't enough evidence to show it's success with this rare cancer.  It's typically used to treat more common cancers.  My most recent scan hasn't shown improvement.  I've had multiple nodes on my lungs from previous scans that weren't cancerous, but they have increased in number and size since I started this drug a few months ago, so I'm eager to find out what's going on when I go back this week.  I'm trying to avoid additional surgeries, especially in a sensitive area behind my knee, but was wondering how radiation or chemo has worked for anyone on here with Aggressive Papillary Adenocarcinoma.  I'm concerned about the change in my lungs and know that's a common area for this type of cancer to metastasize to.  I feel like surgery has been the only thing to combat this.  Thanks in advance!  I will continue to post updates after this Thursday.

Rmckeaveney
Posts: 1
Joined: Feb 2018

Hello all, my name is Will. I’ve recently been diagnosed with ADPA. I had a cyst removed from my left palm in 2010 at the age of 38. It wasn’t discovered to be cancer at that time. After some trouble breathing and a chest X-ray, CT and eventually a PET scan, I was diagnosed in dec of 17, at age 45. I have 3 tumors in my lungs, One fairly large, a tumor in my left armpit lympnode and a hot spot in the muscle of my left thigh. I happen to live in Chapel Hill, NC so I went to UNC 1st. I was told there that there was no known successful treatment for my condition. I then went to MD Anderson in TX for a second opinion. Again I was told no known treatment. The doctor said if I couldn’t find anything else, I might try some generic chemo, aka “platinum mix”. with the little know data, that didn’t seem to be such a good idea. I decided, even though it’s rare to reach out and try to find others with my condition. I’m interested to know what your medical professionals have told you, what type of treatment you’ve tried and the results. I’m also interested if any of you have tried any alternative treatments like diet, supplements, oxygen therapies, clinical trials or anything else. I’ve been rather discouraged by the doctors. I figure if I’m gonna beat this, im going to have to initiate it. I wish you all the best and think if we’re going to raise awareness about this disease, we will have to do it together. 

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