› Forums › Cutaneous Melanoma Community › Stage 4 at diagnosis – a positive story
- This topic has 27 replies, 9 voices, and was last updated 9 years, 8 months ago by
pmeyers.
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- September 5, 2015 at 5:20 pm
My father was diagnosed with stage 4 melanoma in March of 2015. He initially presented in February with abdominal pain and had a chest X-ray taken in the emergency department that revealed multiple lung metastases. Unfortunately that X-ray wasn't read and he was told that his pain was probably reflux and sent home. He then went on a 3 week trip through Africa where he continued to have the pain. The day after he returned, his family doctor (who is also one of his closest friends) came over to his house to tell him that he received a report from the chest X-ray in the emergency department stating that there were 3 lung masses consistent with metastatic cancer.
We went back to the hospital for further imaging and found out that my father had bowel, lung, subcutaneous and lymph node involvement and after a non-diagnostic lung biopsy he had a lymph node biopsy confirming the diagnosis of metastatic melanoma. His CT head was initially negative but he later had an MRI showing a 12mm brain mass. He never had a skin lesion. He is considered melanoma of unknown primary.My sister is a physician and after looking at the scans it was clear that our otherwise healthy 59 year old father didn't have very much time left if we didn't act very quickly. His largest lung tumour was around 8cm and he had multiple huge bowel metastases that put him at high risk for bleeding and perforation. We live in Canada and PD-1 inhibitors weren't approved yet. It is also impossible to get IL2 where we are. His treatment options here were very limited and he was given a prognosis of 2 months to live at diagnosis. We decided to leave Canada and go straight to MD Anderson for their opinion on what to do.We had our first meeting with Dr. Wen-Jen Hwu several days after our fathers diagnosis. I could not have more positive things to say about her. She was positive from the start and immediately gave us hope. She genuinely cared about our father. We didn't have his BRAF testing back at the time of his initial consultation and she wanted to wait for the results of mutation testing prior to deciding on a treatment option.Unfortunately prior to his BRAF status coming back (just 3 days after our initial consult with Dr. Hwu) my fathers bowel perforated from one of his tumours. He was seen by Dr. Ross, one of the melanoma surgeons at MD Anderson who elected to conservatively manage him with IV antibiotics and bowel rest. His bowel disease was so extensive they couldn't tell where he perforated and where the free air was coming from. They wouldn't know where to start or stop cutting. It is also very difficult to approximate cancer infiltrated bowel with cancer infiltrated bowel which would make reconnecting his bowel after a resection very difficult. We didn't know whether his bowel would reseal itself or if it would keep leaking and we would lose him. Fortunately he recovered and he had an intraabdominal abscess aspirated by interventional radiology.While in hospital his mutation status came back and we found out that he was BRAF, NRAS and KIT negative. Dr. Hwu decided to start him on Keytruda which we paid for out of pocket. His first dose of Keytruda was very tough and he ended up back in hospital with another near bowel perforation. His tumours on his scan several days after Keytruda were significantly bigger than just a few weeks prior and we hoped that this was an immune response and not very aggressive tumours.It wasn't an easy road but my fathers response to Keytruda has been remarkable. He is back to going to work every day, he played an hour of tennis without a break last week, and he goes on 5+km walks daily. His most recent CT chest was reported as "substantial interval regression in multiple pulmonary metastases". His over 8cm tumour is now 4.8cm, the 2.2cm tumour shrunk to 1.2cm and 2.6cm tumour shrunk to 5mm. His abdominal CT was also very positive with everything either stable or dramatically smaller. Also, his brain metastasis has shrunk from 12mm to 6mm. Why we elected not to radiate the brain metastasis is a little bit complicated but I'm happy to share if anyone wants details. His only side effects are some fatigue, itching and vitiligo.Just wanted to share a currently positive story and give others some hope. My father was at deaths door several times over the past few months and there were a number of times where we thought we were going to lose him. It is unbelievable to see what Keytruda has done for him. He is healthier than he has been in ages and he has his old life back. We owe everything to the outstanding team at MD Anderson. They definitely saved my fathers life.-msitz
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- September 5, 2015 at 7:09 pm
Msitz – that is a great story. It will give many hope when just a few short years ago those kind of options were almost non-existent.
Have a great weekend.
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- September 5, 2015 at 7:09 pm
Msitz – that is a great story. It will give many hope when just a few short years ago those kind of options were almost non-existent.
Have a great weekend.
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- September 5, 2015 at 7:09 pm
Msitz – that is a great story. It will give many hope when just a few short years ago those kind of options were almost non-existent.
Have a great weekend.
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- September 6, 2015 at 2:01 am
Amazing story! I am sure you are enjoying this blessing to the fullest!! I too have a loved one who is doing remarkable on Keytruda. I wish all would, but hopefully more drugs will be developed and this beast will be gone forever. God bless you and your father!
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- September 6, 2015 at 2:01 am
Amazing story! I am sure you are enjoying this blessing to the fullest!! I too have a loved one who is doing remarkable on Keytruda. I wish all would, but hopefully more drugs will be developed and this beast will be gone forever. God bless you and your father!
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- September 6, 2015 at 2:01 am
Amazing story! I am sure you are enjoying this blessing to the fullest!! I too have a loved one who is doing remarkable on Keytruda. I wish all would, but hopefully more drugs will be developed and this beast will be gone forever. God bless you and your father!
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- September 6, 2015 at 3:23 pm
Wow! What a great story! I'm glad your father is doing so well!
My disease isn't nearly as extensive as your father's, but I have also seen some positive signs with the softening of some skin lesions. I have my next scan on the 15th. Hoping to get some good news about several small lung metastases.
Just a couple of weeks ago, my oncologist told me that Keytruda was starting to look like a "wonder drug." With stories like your father's, she may well be right!
Best wishes to your father, you, and your family.
-Bill
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- September 6, 2015 at 3:23 pm
Wow! What a great story! I'm glad your father is doing so well!
My disease isn't nearly as extensive as your father's, but I have also seen some positive signs with the softening of some skin lesions. I have my next scan on the 15th. Hoping to get some good news about several small lung metastases.
Just a couple of weeks ago, my oncologist told me that Keytruda was starting to look like a "wonder drug." With stories like your father's, she may well be right!
Best wishes to your father, you, and your family.
-Bill
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- September 7, 2015 at 1:13 pm
I've had similar successs with Keytruda. Feel better than 100% because I've been off work for the last 6 months since starting to feel better and (like your father) have been working out and exercising every day for a couple hours. Tumors have all shrunk 75%+ and now no more mets on lung, spleen and stomach. Lots of things now stable and some things starting to really clear up. Great to hear your story.
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- September 7, 2015 at 1:13 pm
I've had similar successs with Keytruda. Feel better than 100% because I've been off work for the last 6 months since starting to feel better and (like your father) have been working out and exercising every day for a couple hours. Tumors have all shrunk 75%+ and now no more mets on lung, spleen and stomach. Lots of things now stable and some things starting to really clear up. Great to hear your story.
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- September 7, 2015 at 1:13 pm
I've had similar successs with Keytruda. Feel better than 100% because I've been off work for the last 6 months since starting to feel better and (like your father) have been working out and exercising every day for a couple hours. Tumors have all shrunk 75%+ and now no more mets on lung, spleen and stomach. Lots of things now stable and some things starting to really clear up. Great to hear your story.
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- September 6, 2015 at 3:23 pm
Wow! What a great story! I'm glad your father is doing so well!
My disease isn't nearly as extensive as your father's, but I have also seen some positive signs with the softening of some skin lesions. I have my next scan on the 15th. Hoping to get some good news about several small lung metastases.
Just a couple of weeks ago, my oncologist told me that Keytruda was starting to look like a "wonder drug." With stories like your father's, she may well be right!
Best wishes to your father, you, and your family.
-Bill
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- September 15, 2015 at 4:33 pm
Thanks for the positive story msitz.
My mom was diagnosed with stage 4 melanoma at the end of August. Most of the tumors are in her liver and lungs and one behind her left eye.
She received her first dose of Keytruda about 10 days ago. She went home from the hospital two days after receving the treatment but went back into the hospital 3 days later with severe abdominal pain. They were able to manage the pain but she has grown very weak and now needs oxygen to help her breath.
The doctors aren't sure if it is a reaction to the treatment – if so it seems quite severe and sudden – or just the cancer getting more aggressive. The doctors want to get her well enough to receive her next dose of Keytruda the end of next week.
Does anyone know if her worsening condition could be related to the Keytruda? I'm trying to remain hopeful that it could just be getting worse before it gets better?
Thanks.
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- September 15, 2015 at 4:33 pm
Thanks for the positive story msitz.
My mom was diagnosed with stage 4 melanoma at the end of August. Most of the tumors are in her liver and lungs and one behind her left eye.
She received her first dose of Keytruda about 10 days ago. She went home from the hospital two days after receving the treatment but went back into the hospital 3 days later with severe abdominal pain. They were able to manage the pain but she has grown very weak and now needs oxygen to help her breath.
The doctors aren't sure if it is a reaction to the treatment – if so it seems quite severe and sudden – or just the cancer getting more aggressive. The doctors want to get her well enough to receive her next dose of Keytruda the end of next week.
Does anyone know if her worsening condition could be related to the Keytruda? I'm trying to remain hopeful that it could just be getting worse before it gets better?
Thanks.
-
- September 15, 2015 at 4:33 pm
Thanks for the positive story msitz.
My mom was diagnosed with stage 4 melanoma at the end of August. Most of the tumors are in her liver and lungs and one behind her left eye.
She received her first dose of Keytruda about 10 days ago. She went home from the hospital two days after receving the treatment but went back into the hospital 3 days later with severe abdominal pain. They were able to manage the pain but she has grown very weak and now needs oxygen to help her breath.
The doctors aren't sure if it is a reaction to the treatment – if so it seems quite severe and sudden – or just the cancer getting more aggressive. The doctors want to get her well enough to receive her next dose of Keytruda the end of next week.
Does anyone know if her worsening condition could be related to the Keytruda? I'm trying to remain hopeful that it could just be getting worse before it gets better?
Thanks.
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