I think we can help each other too. My finance has it in his liver, lungs, 4 as of our knowledge right now, and the tumor on his back and the brain was taken care of. Its been less then a month and I am still in shock. Our stories are similar. Want to swap emails? We find out in 3 days what mutation the cancer is...still not comfortable with that word. Are you guys talking about treatment with IL2? Glad you found me...support is huge right now. Good luck with the next few days
- Bishop, CA
- Member Since Jan 2013
Their Diagnoses (1)
- Spouse/Partner: Skin Cancer - Melanoma
- Patient Info: Newly diagnosed (has not begun treatment), Diagnosed: over 4 years ago, Male, Age: 33, Stage IV, BRAF mutation positive: Don't Know, c-kit positive: Don't Know
- View this journey (2 Experiences)
qtkitycat wrote on MamaFagan03's wall
Hi, I read a few of your posts and I think I can be a good resource for you. My fiance was diagnosed May 2012 with a malignant melanoma on his back, clark level three. At the time the removed the leison and removed two lymph nodes. It all came back negative, no more cancer. He was cleared. Now last week he was diagnosed with stage iv cancer that has traveled to his lungs, testicle, kidney, liver, adrenal gland and spleen and possibly more places, they haven't tested everywhere yet, brain scan tomorrow. We are not sure yet if it is melanoma or another form of cancer. I'm scared as XXX and we wont know til the end of the week what the doctors want to do.
I fought tooth and nail with his insurance and doctors last year to get him the necessary treatment...and I was successful. I would like to do what I can to help everybody get the help they need and can advice you or just impart the things I learned along the way.
Main thing, be vigilant with your follow ups. We weren't and he is paying the price right now. Not worth it.
Send me an email [email redacted]. I will do what I can to help you.
qtkitycat wrote on createdone's wall
Hi, my fiance was just diagnosed last week with stage iv cancer. they think it is either his melanoma that has spread from his battle last year or a new case of testicular cancer that has spread. It has gone to his lungs, kidney, liver, spleen and adrenal glands. He has surgery in 2 days and then they can do a biopsy to see what it is and start treatment.
I am scared to death. I am staying positive for him but there is so much cancer I don't know what is going to happen. And there could be more.
I read your posts and maybe we can help each other
qtkitycat wrote on mrharriscmsgt's wall
Hi, my fiance was just diagnosed with stage iv melanoma. It has spread like wildfire. I'm scared and I don't know what to do. Waiting for doctors to decide their plan of attack. I'm trying to stay positive for him, but I'm scared to lose him. How did things go with you? Any advice you can impart would be greatly appreciated
qtkitycat started followingover 4 years ago
Help, my fiance was just diagnosed with stage iv cancer. His melanoma spread to his, lungs, testicle, kidney, liver, spleen and adrenal
As others have pointed out, a lot of progress has been made in the last couple of years in cancer treatment and melanoma is no exception. In 2011 Yervoy, an immunotherapy and Zelboraf, a targeted therapy both received FDA approval and are helping many stage IV melanoma patients. In addition, there are currently a number of promising and exciting clinical trials.
I am a stage IV melanoma patient and it is almost 3 ½ years since my diagnosis. I just had a follow-up with my doctor yesterday and I’m still doing fine and all set for my next check-up in six weeks.
It’s hard to tell from your profile but if you are not yet so doing, I would encourage you to see a melanoma specialist. Best of luck.
You need to discuss whether you are willing to go clinical trial root. Stage 4 patients who want to fight accept that they need access to clinical trials.
Next identify best melanoma research institutions you are willing to travel to & call their Melanoma trial Research nurse or coordinator to find open trials. Try to do this w 2 or 3 so you have comparison. Set an appt & research top institutions so you have back up.
Below is a short list of top melanoma institutions:
Dana Farber, Boston
Memorial Sloan Kettering, NYC , Chapman, Wolcheck
National Cancer Inst,
Univ of Pittsburgh Medical Ctr
The Angeles Clinic