› Forums › General Melanoma Community › Annual Scans clean! Stage IV NED since 2009
- This topic has 27 replies, 9 voices, and was last updated 8 years, 3 months ago by
Rocco.
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- January 24, 2016 at 1:15 am
Just had my annual visit to DFCI in Boston. Annual CT (chest/abdomen/pelvis) and MRI (brain) were clear! Blessed to still be here. Still praying daily, working and living life. Prayers and good vibes to all dealing with melanoma.
-Rocco, Stage IV in 2005, NED in 2009, Ipi 10mg/kg responder.
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- January 24, 2016 at 2:15 am
Absolutely amazing and wonderful news Rocco!!! I was recently diagnosed Stage IIIB and its posts like yours that give me hope and lessen my fears! God bless you!! I am praying you have many, many more years of NED!!
Jenna
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- January 24, 2016 at 2:15 am
Absolutely amazing and wonderful news Rocco!!! I was recently diagnosed Stage IIIB and its posts like yours that give me hope and lessen my fears! God bless you!! I am praying you have many, many more years of NED!!
Jenna
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- January 24, 2016 at 2:15 am
Absolutely amazing and wonderful news Rocco!!! I was recently diagnosed Stage IIIB and its posts like yours that give me hope and lessen my fears! God bless you!! I am praying you have many, many more years of NED!!
Jenna
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- January 24, 2016 at 4:37 am
Amazing news!! I’m so happy for you, Rocco! I agree, this is very uplifting for all of us still battling. Hoping you have MANY MANY MANY more years of NED!WithinMySkin
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- January 24, 2016 at 4:37 am
Amazing news!! I’m so happy for you, Rocco! I agree, this is very uplifting for all of us still battling. Hoping you have MANY MANY MANY more years of NED!WithinMySkin
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- January 24, 2016 at 4:37 am
Amazing news!! I’m so happy for you, Rocco! I agree, this is very uplifting for all of us still battling. Hoping you have MANY MANY MANY more years of NED!WithinMySkin
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- January 24, 2016 at 3:26 pm
So nice to hear from you Rocco, always nice to hear good news . I have mel in my liver , lungs some in lympth nodes I had ipp only 3 mg thou 4 doses it has reduced my tumours had 2 updated scans with stable . Hoping more shrinkage or stable on next scans in February. Will ask for maintance dose if still stable do not like the idea of not doing anything sitting and waiting. I have pain in my left side at present not sure if it's with treatment we all know treatment can give you side effects well after treatment, but I am concerned about it.
Keep up the good fight my friend enjoy life every day
scooby❤️
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- January 24, 2016 at 3:26 pm
So nice to hear from you Rocco, always nice to hear good news . I have mel in my liver , lungs some in lympth nodes I had ipp only 3 mg thou 4 doses it has reduced my tumours had 2 updated scans with stable . Hoping more shrinkage or stable on next scans in February. Will ask for maintance dose if still stable do not like the idea of not doing anything sitting and waiting. I have pain in my left side at present not sure if it's with treatment we all know treatment can give you side effects well after treatment, but I am concerned about it.
Keep up the good fight my friend enjoy life every day
scooby❤️
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- January 24, 2016 at 3:26 pm
So nice to hear from you Rocco, always nice to hear good news . I have mel in my liver , lungs some in lympth nodes I had ipp only 3 mg thou 4 doses it has reduced my tumours had 2 updated scans with stable . Hoping more shrinkage or stable on next scans in February. Will ask for maintance dose if still stable do not like the idea of not doing anything sitting and waiting. I have pain in my left side at present not sure if it's with treatment we all know treatment can give you side effects well after treatment, but I am concerned about it.
Keep up the good fight my friend enjoy life every day
scooby❤️
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- January 25, 2016 at 5:32 am
So Rocco,
Looks like we are in the same boat (a good one that is). I am NED stage IV since June 2010. Have your docs discussed when to stop scanning? I have lost count on how many PET/CT's, CT's, and other chest x-rays I have had over the years but I feel like I am glowing.
At what point do we pull back from scanning? I am only 48 and don't want to get another cancer due to all of my accumulated radiation exposure. Just wondering what your docs thoughts are. Mine are too leery to stop, but after IL-2 this far out, last long term follow up showed no recurrance and dare I say "cure"?
My one onc still wants chest x-rays but the likelyhood of a second met back to the lungs is even odds against one popping up elsewhere. So why even bother with the chest x-ray then?
Congrats fellow tail of the curve setter!
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- January 25, 2016 at 5:32 am
So Rocco,
Looks like we are in the same boat (a good one that is). I am NED stage IV since June 2010. Have your docs discussed when to stop scanning? I have lost count on how many PET/CT's, CT's, and other chest x-rays I have had over the years but I feel like I am glowing.
At what point do we pull back from scanning? I am only 48 and don't want to get another cancer due to all of my accumulated radiation exposure. Just wondering what your docs thoughts are. Mine are too leery to stop, but after IL-2 this far out, last long term follow up showed no recurrance and dare I say "cure"?
My one onc still wants chest x-rays but the likelyhood of a second met back to the lungs is even odds against one popping up elsewhere. So why even bother with the chest x-ray then?
Congrats fellow tail of the curve setter!
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- January 25, 2016 at 5:32 am
So Rocco,
Looks like we are in the same boat (a good one that is). I am NED stage IV since June 2010. Have your docs discussed when to stop scanning? I have lost count on how many PET/CT's, CT's, and other chest x-rays I have had over the years but I feel like I am glowing.
At what point do we pull back from scanning? I am only 48 and don't want to get another cancer due to all of my accumulated radiation exposure. Just wondering what your docs thoughts are. Mine are too leery to stop, but after IL-2 this far out, last long term follow up showed no recurrance and dare I say "cure"?
My one onc still wants chest x-rays but the likelyhood of a second met back to the lungs is even odds against one popping up elsewhere. So why even bother with the chest x-ray then?
Congrats fellow tail of the curve setter!
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- January 25, 2016 at 6:30 am
Congratulations! I'm right there with you and Kim K (been a long time since I've posted.). I'm Stage IV since 2008 and was originally DX with melanoma in 2001.
I did 1 year INF, vaccine trial, radiation of left arm, Ipi + vaccine clinical trial, and finally, 6 mos of pulsed IL-2 (which at the time was the mainenance treatment following biochemo – I just did it as an adjuvant treatment).
To answer Kim's question about scans, my onc has advised scans for 10 years following the last recurrence. Some advise chest xrays but I'm with Kim on that – given the unpredicatable path mel can take, I am personally uncomfortable with that.
All that said, I probably light up in the dark 🙂 But – we have to pick our battles and I'm now doing the CT of chest, abdomen, and pelvis once a year until I reach the 10 year mark.
I remember both of you from the "old" MPIP days . .it is wonderful that we are here to give others hope.
Mary
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- January 25, 2016 at 6:30 am
Congratulations! I'm right there with you and Kim K (been a long time since I've posted.). I'm Stage IV since 2008 and was originally DX with melanoma in 2001.
I did 1 year INF, vaccine trial, radiation of left arm, Ipi + vaccine clinical trial, and finally, 6 mos of pulsed IL-2 (which at the time was the mainenance treatment following biochemo – I just did it as an adjuvant treatment).
To answer Kim's question about scans, my onc has advised scans for 10 years following the last recurrence. Some advise chest xrays but I'm with Kim on that – given the unpredicatable path mel can take, I am personally uncomfortable with that.
All that said, I probably light up in the dark 🙂 But – we have to pick our battles and I'm now doing the CT of chest, abdomen, and pelvis once a year until I reach the 10 year mark.
I remember both of you from the "old" MPIP days . .it is wonderful that we are here to give others hope.
Mary
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- January 25, 2016 at 6:30 am
Congratulations! I'm right there with you and Kim K (been a long time since I've posted.). I'm Stage IV since 2008 and was originally DX with melanoma in 2001.
I did 1 year INF, vaccine trial, radiation of left arm, Ipi + vaccine clinical trial, and finally, 6 mos of pulsed IL-2 (which at the time was the mainenance treatment following biochemo – I just did it as an adjuvant treatment).
To answer Kim's question about scans, my onc has advised scans for 10 years following the last recurrence. Some advise chest xrays but I'm with Kim on that – given the unpredicatable path mel can take, I am personally uncomfortable with that.
All that said, I probably light up in the dark 🙂 But – we have to pick our battles and I'm now doing the CT of chest, abdomen, and pelvis once a year until I reach the 10 year mark.
I remember both of you from the "old" MPIP days . .it is wonderful that we are here to give others hope.
Mary
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- January 25, 2016 at 11:35 pm
Wonderful news Rocco! I don't visit this site much anymore but I decided to check in tonight and I'm so happy to see people I recognize from the old days still doing well! So very happy to see your post – cheers!
DebbieH, stage 3C, NED over 14 years.
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- January 25, 2016 at 11:35 pm
Wonderful news Rocco! I don't visit this site much anymore but I decided to check in tonight and I'm so happy to see people I recognize from the old days still doing well! So very happy to see your post – cheers!
DebbieH, stage 3C, NED over 14 years.
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- January 25, 2016 at 11:35 pm
Wonderful news Rocco! I don't visit this site much anymore but I decided to check in tonight and I'm so happy to see people I recognize from the old days still doing well! So very happy to see your post – cheers!
DebbieH, stage 3C, NED over 14 years.
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- January 26, 2016 at 3:09 am
To all those that replied to my original post – thank you for the kind words! Posts from long-term survivors helped me immensely back in the days when I was struggling – through initial diagnosis, treatments/surgeries and side effects – by keeping hope alive. It's the very least I can do to try and repay that by posting good news.l
There are also so very many whose posted helped but who are no longer here….I remember them as well and still think of them often.
Kim, Mary, Debbie – I remember all of you. It's been a long road, a hell of a journey, but we are still here!
-Rocco
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- January 26, 2016 at 3:09 am
To all those that replied to my original post – thank you for the kind words! Posts from long-term survivors helped me immensely back in the days when I was struggling – through initial diagnosis, treatments/surgeries and side effects – by keeping hope alive. It's the very least I can do to try and repay that by posting good news.l
There are also so very many whose posted helped but who are no longer here….I remember them as well and still think of them often.
Kim, Mary, Debbie – I remember all of you. It's been a long road, a hell of a journey, but we are still here!
-Rocco
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- January 26, 2016 at 3:09 am
To all those that replied to my original post – thank you for the kind words! Posts from long-term survivors helped me immensely back in the days when I was struggling – through initial diagnosis, treatments/surgeries and side effects – by keeping hope alive. It's the very least I can do to try and repay that by posting good news.l
There are also so very many whose posted helped but who are no longer here….I remember them as well and still think of them often.
Kim, Mary, Debbie – I remember all of you. It's been a long road, a hell of a journey, but we are still here!
-Rocco
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