› Forums › General Melanoma Community › Just Diagnosed with Stage IV
- This topic has 15 replies, 5 voices, and was last updated 9 years, 2 months ago by
Patina.
- Post
-
- June 18, 2016 at 9:03 am
Hi all,
I have been reading a few posts and thought I would share my own story.
I am a 35yr old male from Perth, Western Australia. I was recently diagnosed with Stage IV melanoma.
It started almost 2 months ago when I discovered a lump under my right armpit. After ultrasounds and a biopsy I was told I had metastic melanoma. The lump was an enlarged lymph node.
I then went to have a PET scan which confirmed I have a met on my left thigh. My biopsy also confirmed that I am BRAF positive.
This week I start my first treatment of ipilimumab and nivolumab. I have been placed on a clinical trial at Sir Charles Gairdner hospital. I have read some promising results from this trial, but I am not getting ahead fo myself.
I will try and keep this updated on a regular basis for anyone who might be going through the same thing.
I try not to let my thoughts wander into a negative space, but I guess in situations like this it cant be helped.
Good luck to everyone else out there going through the same thing.
- Replies
-
-
- June 18, 2016 at 6:46 pm
Hello FromPerth! So sorry you had to join us here but it's a really good group of people. I have not tried the treatments you are on but many here have and I hope they will share their experiences with you. As I am sure you are aware, all is not lost. Many folks on this message board have been living with a Stage IV diagnosis for years. Best of luck to you!
-
- June 18, 2016 at 6:46 pm
Hello FromPerth! So sorry you had to join us here but it's a really good group of people. I have not tried the treatments you are on but many here have and I hope they will share their experiences with you. As I am sure you are aware, all is not lost. Many folks on this message board have been living with a Stage IV diagnosis for years. Best of luck to you!
-
- June 18, 2016 at 6:46 pm
Hello FromPerth! So sorry you had to join us here but it's a really good group of people. I have not tried the treatments you are on but many here have and I hope they will share their experiences with you. As I am sure you are aware, all is not lost. Many folks on this message board have been living with a Stage IV diagnosis for years. Best of luck to you!
-
- June 20, 2016 at 12:26 pm
Sorry you find yourself here. I think this mob are fairly active and probably a great support, if you need someone locally:
I like your attitude and hope the combo treatment works its magic for you.
-
- June 20, 2016 at 12:26 pm
Sorry you find yourself here. I think this mob are fairly active and probably a great support, if you need someone locally:
I like your attitude and hope the combo treatment works its magic for you.
-
- June 20, 2016 at 12:26 pm
Sorry you find yourself here. I think this mob are fairly active and probably a great support, if you need someone locally:
I like your attitude and hope the combo treatment works its magic for you.
-
- June 21, 2016 at 7:55 am
Hi FromPerth,
You found a great resource and group of people. Ask us anything and share what is going on with us. We can help.
My advice. Make sure you get a brain MRI and get a second opinion even after you start treatment if you have any concerns. It's very helpful.
Also, have a game plan for colitis, watch out for thrush (mouth sores) and find out the best way to communicate with your doctor. We found email very helpful. Get and keep a copy of all of your records. They really come in handy when you need them. And take a tape recorder if you need it to appointments and make sure you have a good advocate. If I wasn't helping my Mom she wouldn't have gotten what she needed. She always likes to minimizes what is going on and if I wasn't as stubborn as her and my Dad put together we would have been in big trouble. Oh, and be honest about what is going on. It can save you a lot of trouble down the road.
My Mom was diagnosed at stage IV in November of 2013. We found out 3 weeks later she also have 3 brain mets they missed! Even after that scare and another with a radiation oncologist and neuro-oncologist my Mom has had excellent results with ipi and gamma knife and later keytruda and gamma knife. She's had no long term effects that affect her life and I think she will end up NED this year which is huge for someone who had 28 brain tumors, 6 tumors in her trunk, 1 on her neck and 18 on her scalp.
Keeping my fingers crossed for you!
-
- June 21, 2016 at 7:55 am
Hi FromPerth,
You found a great resource and group of people. Ask us anything and share what is going on with us. We can help.
My advice. Make sure you get a brain MRI and get a second opinion even after you start treatment if you have any concerns. It's very helpful.
Also, have a game plan for colitis, watch out for thrush (mouth sores) and find out the best way to communicate with your doctor. We found email very helpful. Get and keep a copy of all of your records. They really come in handy when you need them. And take a tape recorder if you need it to appointments and make sure you have a good advocate. If I wasn't helping my Mom she wouldn't have gotten what she needed. She always likes to minimizes what is going on and if I wasn't as stubborn as her and my Dad put together we would have been in big trouble. Oh, and be honest about what is going on. It can save you a lot of trouble down the road.
My Mom was diagnosed at stage IV in November of 2013. We found out 3 weeks later she also have 3 brain mets they missed! Even after that scare and another with a radiation oncologist and neuro-oncologist my Mom has had excellent results with ipi and gamma knife and later keytruda and gamma knife. She's had no long term effects that affect her life and I think she will end up NED this year which is huge for someone who had 28 brain tumors, 6 tumors in her trunk, 1 on her neck and 18 on her scalp.
Keeping my fingers crossed for you!
-
- June 21, 2016 at 7:55 am
Hi FromPerth,
You found a great resource and group of people. Ask us anything and share what is going on with us. We can help.
My advice. Make sure you get a brain MRI and get a second opinion even after you start treatment if you have any concerns. It's very helpful.
Also, have a game plan for colitis, watch out for thrush (mouth sores) and find out the best way to communicate with your doctor. We found email very helpful. Get and keep a copy of all of your records. They really come in handy when you need them. And take a tape recorder if you need it to appointments and make sure you have a good advocate. If I wasn't helping my Mom she wouldn't have gotten what she needed. She always likes to minimizes what is going on and if I wasn't as stubborn as her and my Dad put together we would have been in big trouble. Oh, and be honest about what is going on. It can save you a lot of trouble down the road.
My Mom was diagnosed at stage IV in November of 2013. We found out 3 weeks later she also have 3 brain mets they missed! Even after that scare and another with a radiation oncologist and neuro-oncologist my Mom has had excellent results with ipi and gamma knife and later keytruda and gamma knife. She's had no long term effects that affect her life and I think she will end up NED this year which is huge for someone who had 28 brain tumors, 6 tumors in her trunk, 1 on her neck and 18 on her scalp.
Keeping my fingers crossed for you!
- You must be logged in to reply to this topic.