Francyn Stage IV melanoma

55 yo Diagnosed May 20, 2016 with stage IV melanoma. No known side of origin for the melanoma. Just started Yervoy.

 

At the end of April, you notice my left foot and ankle was swollen so I went to the doctor not knowing what it was. An ultrasound showed it was not a blood clot but my groin lymph nodes were swollen. That was followed by a CT, biopsy and an ultrasound showed it was not a blood clot but my groin lymph nodes were swollen. That was followed by a CT, biopsy and on May 20, 2016, I was diagnosed with malignant melanoma.  MRI showed no signs in the brain and PET scan revealed only left groin and abdomen lymph nodes involved, I am BRAF negative with no known point of origin for the melanoma. I am fortunate that it is only in my abdomen and groin lymph nodes on the left side and not in brain, bones, lungs, or other organs. I started my first round of Yervoy on Friday. I would like to connect with other melanoma patients so we can fight together!

Sun, 2016-06-12

Comments

AntSophJess17 - (6/25/2016 - 8:00am)

I was originally diagnosed in 2006; I had a nasty mole on my ankle that I ignored because I didn't have the time to go the doctors! When I finally did, I found out I had stage 3 melanoma....it had spread to several lymph nodes in my groin. After several surgeries and a year of treatment of interferon, I was given a clean bill of health. Fast forward 10 years & here I am again! What started out as 2 masses in the same leg where the melanoma had originated, thinking some more surgery/treatment (new & improved!) from what they had 10 years ago, and I would be on my way again; had me still at a loss for words as to how quickly my Stage 3 recurrent melanoma has turned into Stage 4 recurrent metastatic melanoma. After starting the immunotherapy, I found out the cancer spread to my kidney & stomach. Then I found out I couldn't finish the immunotherapy because it was causing my liver studies to become extremely elevated & I became extremely sick. Now I've started the targeted therapy with Zelboraf & Cotellic. I feel like I'm in a state of panic all the time because I don't want to worry my family with all the "what ifs" I have going constantly through my head; and sometimes when I do go to say something about how I'm feeling, I stop myself because I can feel the water works getting ready to start. I am so grateful I stumbled upon this website. Other people dealing with the same crappy cancer as me! It's a God send! Please feel free to ask me anything. Hopefully I'll have an answer for you, but if I don't I'm sure someone will! Be strong & think positive! 

Hi Francine,
My fiancé, Tony was diagnosed with stage 4 malignant melanoma on April 26, 2016. It was in his left shoulder. He went in for what he thought was a broken collar bone. The x-ray showed cancer. After a PET scan, brain MRI, and biopsy,the diagnosis floored us! We just sat there with our mouths hanging open. They gave him 6-8 months. They also can't find the origin. It spread to his armpit lymph nodes and a 2 cm tumor was discovered in his brain.
He has had 10 rounds of radiation in his shoulder and 5 in his brain. It didn't work in his shoulder. They are giving infusions of Keytuda every 3 weeks.He also tested negative for BRAF. He is getting the Jimmy Carter treatment. Jimmy Carter is still alive and has stopped treatments after 1 year. I still have hope that he will survive this. He is on steroids which make him angry, eat everything in site, can't sleep, etc. We convinced his Dr to ween him off. So he starts on MS Condin and MSIR tonight to help with pain and sleep.
He can no longer work, so he sits around all day with nothing to do but think. By the time I get home from work, he is so angry and bored and scared.
Applied for SSDI...5 month wait. Bills piling up.
Crazy!!
Hoping to shrink the tumors and have surgery soon.

Will update later.

I was diagnosed in May 2015 with Stage III cutaneous melanoma.  I have had 2 surgeries - last June and last September for lymph nodes in the right groin.  In November I went to Stage IV with lung, liver, right and left groin tumors.  I started Opdivo and Yervoy then.  I have infusions every two weeks, PET/CT every 3 months.  I was able to take 2 treatments of both.  Now I just do Opdivo by itself.  The tumors have been shrinking.  I do not have cancer in my brain - had the MRI and it was clear.  They thought the Yervoy was causing diarrhea and I had to stop taking it.  I had severe chills and shaking when it was infused the second time.

I feel very lucky and lead a pretty normal life other than the fact I have stage IV and treatment every two weeks.  I do get a derm check every 3 months and now have gone to every 6 months.  I did have some pre-cancer skin lesions removed but also not a big deal.  I was let go from my job in December and that caused a lot of chaos about insurance but Obama care saved the day.  I feel very blessed. 

It has been a year since diagnosis.  I an happy with how things are going now and that I get to spend more time with my kids and grandkids.  I do have lymphadema in my right leg but I try not to let it slow me down.  Water aerobics really helps.  I wear compression socks and nike 20% spandex shorts.  I am kind of itchy on my scalp, armpits and back.  That's about it for changes in my life.  I'm not letting cancer take over my life at this point.  I am enjoying each and every day.  I have been given a gift of more time.  I hope your treatment is as successful for you as it has been for me!

Sharon93065 - (6/19/2017 - 4:56am)

How are you doing today?  I just started with  my first Opdivo,Vervoi treatment. Are you still doing Opdivo?

 

Sharon93065 - (6/19/2017 - 4:56am)

How are you doing today?  I just started with  my first Opdivo,Vervoi treatment. Are you still doing Opdivo?