› Forums › General Melanoma Community › 10 Years Stage IV NED
- This topic has 20 replies, 9 voices, and was last updated 12 years, 8 months ago by
Joyce.
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- September 24, 2011 at 5:43 pm
It's been a long time since I've been on this board, and it's gotten pretty high tech since the last time I checked it. My husband Peter was diagnosed with stage IV melanoma in Oct 1999. It was found first in his bowel, then in his brain, then a couple of years later in his chest. The amazing thing is that he has been NED since 2001. He has been working and in good health. In 1999 when I read on this board that stage IV people were NED, I actually thought they were lying. There is hope!
It's been a long time since I've been on this board, and it's gotten pretty high tech since the last time I checked it. My husband Peter was diagnosed with stage IV melanoma in Oct 1999. It was found first in his bowel, then in his brain, then a couple of years later in his chest. The amazing thing is that he has been NED since 2001. He has been working and in good health. In 1999 when I read on this board that stage IV people were NED, I actually thought they were lying. There is hope!
Peter would not have survived without two exceptional doctors. His surgical oncologist is Leland Foshag, (John Wayne Cancer Institute and Angeles Clinic). His medical oncologist is Steve O'Day, who started The Angeles Clinic. We were blindsided when we went for Peter's scans on Thursday and told that he is no longer with the practice. The Angeles Clinic will never be the same. He is irreplaceable.
Judy Clifford
Take charge of your treatment, and find the best doctors out there!
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- September 24, 2011 at 7:51 pm
Judy. Thanks so much for your post,it is always encouraging to see stage IV people doing well and living life. My husband was initially diagnosed with a tumor in his rectum, and in July became stage IV with a lung tumor. The lung tumor was resected and he is currently NED, we can only hope and pray that he can maintain stable stage IV for many years to come. Your story was proof that it can happen! If you get a second, can you post what treatments your husband had during his years of fighting melanoma. Wishing you many more healthy years together! Valerie (Phil’s wife) -
- September 24, 2011 at 7:51 pm
Judy. Thanks so much for your post,it is always encouraging to see stage IV people doing well and living life. My husband was initially diagnosed with a tumor in his rectum, and in July became stage IV with a lung tumor. The lung tumor was resected and he is currently NED, we can only hope and pray that he can maintain stable stage IV for many years to come. Your story was proof that it can happen! If you get a second, can you post what treatments your husband had during his years of fighting melanoma. Wishing you many more healthy years together! Valerie (Phil’s wife) -
- September 24, 2011 at 10:06 pm
Amazing! Congrats to your hubby for reaching 10 years NED! Has your husband just had surgery or has he taken any medication?
Kellie(from Iowa) Stage IV
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- September 24, 2011 at 10:50 pm
Hi Judy,
Congrats to your husband! This is wonderful news and gives the rest of us with Stage 4 hope.
Like Kellie, I would also like to know if it was surgery or treatment that helped your husband.
I hope and send best wishes for many more years of NED!
Lisa – Stage 4
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- September 24, 2011 at 10:50 pm
Hi Judy,
Congrats to your husband! This is wonderful news and gives the rest of us with Stage 4 hope.
Like Kellie, I would also like to know if it was surgery or treatment that helped your husband.
I hope and send best wishes for many more years of NED!
Lisa – Stage 4
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- September 25, 2011 at 4:15 am
Peter's story is kibd of long, but I'll try to be brief. We basically tried everything, because at the time, everything except interfuron was experimental, and I didn't like those odds. His history includes a clear SNB, then lymph node mets in his neck (15-16), 2 rounds of bio-chemo with Dr. O'Day (IL-2, DTIC, cisplat interfuron, vinblastin), radical neck disection, 2 additional rounds of bio-chemo. This was back in the day when they didn't do home hydration for bio-chemo patients. The neck dissection showed that Peter responded incredibly well to the bio-chemo. We did CancerVax vaccine at JWCI, and then he was diagnosed Stage IV. At that point, Foshag recommended we save some of his own tissue to do an autologous vaccine, which we did with part of his intestinal met. We sent ot to Hoag Hospital with Dr. Dillman. Peter got gamma knife for his one brain met at USC. It hemorraged and we did a craniotomy with Keith Black at Cedars. All the while, we kept on maintenance IlL-2 with Dr. O'Day. Except for the chest met, we have had no recurrences of melanoma.
I hope this helps. This site was my refuge when I was up at night worrying about our next step in treatment.
I wish you all the best. God bless.
Judy Clifford
Take charge of your treatment.
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- September 25, 2011 at 4:15 am
Peter's story is kibd of long, but I'll try to be brief. We basically tried everything, because at the time, everything except interfuron was experimental, and I didn't like those odds. His history includes a clear SNB, then lymph node mets in his neck (15-16), 2 rounds of bio-chemo with Dr. O'Day (IL-2, DTIC, cisplat interfuron, vinblastin), radical neck disection, 2 additional rounds of bio-chemo. This was back in the day when they didn't do home hydration for bio-chemo patients. The neck dissection showed that Peter responded incredibly well to the bio-chemo. We did CancerVax vaccine at JWCI, and then he was diagnosed Stage IV. At that point, Foshag recommended we save some of his own tissue to do an autologous vaccine, which we did with part of his intestinal met. We sent ot to Hoag Hospital with Dr. Dillman. Peter got gamma knife for his one brain met at USC. It hemorraged and we did a craniotomy with Keith Black at Cedars. All the while, we kept on maintenance IlL-2 with Dr. O'Day. Except for the chest met, we have had no recurrences of melanoma.
I hope this helps. This site was my refuge when I was up at night worrying about our next step in treatment.
I wish you all the best. God bless.
Judy Clifford
Take charge of your treatment.
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- September 26, 2011 at 11:47 pm
thanks for replying. As a Stage IV fighter right now, these are the stories I need to be reading, of all these people who continue to beat this damn cancer for as long as they can. It's the only thing holding me together.
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- September 26, 2011 at 11:47 pm
thanks for replying. As a Stage IV fighter right now, these are the stories I need to be reading, of all these people who continue to beat this damn cancer for as long as they can. It's the only thing holding me together.
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- September 27, 2011 at 12:00 am
I used to come on line as Dick’s wife (Dick stage 4). I have not been on the board for awhile but want to add to good news. Dick was stage 4 right out of the box in Dec 2002.we were told he had a 10% chance of being alive in 5years. Not only is he alive but he just reached 5years Ned! We wangled our way into an anti ctla -4trial in 2004. That is now ipi and a wonderful drug for stage 3and 4. Just had 5year scans and Dr Lawrence says he thinks it is not going to come back. Be diligent in your research and just know the future is so much brighter than a few years ago. God bless!Joyce from MA.
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- September 27, 2011 at 12:00 am
I used to come on line as Dick’s wife (Dick stage 4). I have not been on the board for awhile but want to add to good news. Dick was stage 4 right out of the box in Dec 2002.we were told he had a 10% chance of being alive in 5years. Not only is he alive but he just reached 5years Ned! We wangled our way into an anti ctla -4trial in 2004. That is now ipi and a wonderful drug for stage 3and 4. Just had 5year scans and Dr Lawrence says he thinks it is not going to come back. Be diligent in your research and just know the future is so much brighter than a few years ago. God bless!Joyce from MA.
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- September 27, 2011 at 12:01 am
I used to come on line as Dick’s wife (Dick stage 4). I have not been on the board for awhile but want to add to good news. Dick was stage 4 right out of the box in Dec 2002.we were told he had a 10% chance of being alive in 5years. Not only is he alive but he just reached 5years Ned! We wangled our way into an anti ctla -4trial in 2004. That is now ipi and a wonderful drug for stage 3and 4. Just had 5year scans and Dr Lawrence says he thinks it is not going to come back. Be diligent in your research and just know the future is so much brighter than a few years ago. God bless!Joyce from MA.
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- September 27, 2011 at 12:01 am
I used to come on line as Dick’s wife (Dick stage 4). I have not been on the board for awhile but want to add to good news. Dick was stage 4 right out of the box in Dec 2002.we were told he had a 10% chance of being alive in 5years. Not only is he alive but he just reached 5years Ned! We wangled our way into an anti ctla -4trial in 2004. That is now ipi and a wonderful drug for stage 3and 4. Just had 5year scans and Dr Lawrence says he thinks it is not going to come back. Be diligent in your research and just know the future is so much brighter than a few years ago. God bless!Joyce from MA.
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