@maryd
Forum Replies Created
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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 31, 2016 at 11:05 pm
Thanks for the feedback Celeste – yes, to be sure , it is way better than the alternative! I suspect it is a combination of all the factors coming together. Taking NSAIDs with minimal success and will be having mid foot fusion in the near future.
The very bright side of my journey is that I can give hope to others fighting this disease – there are more and more long term survivors out there 🙂
Mary
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- January 31, 2016 at 11:05 pm
Thanks for the feedback Celeste – yes, to be sure , it is way better than the alternative! I suspect it is a combination of all the factors coming together. Taking NSAIDs with minimal success and will be having mid foot fusion in the near future.
The very bright side of my journey is that I can give hope to others fighting this disease – there are more and more long term survivors out there 🙂
Mary
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- January 31, 2016 at 11:05 pm
Thanks for the feedback Celeste – yes, to be sure , it is way better than the alternative! I suspect it is a combination of all the factors coming together. Taking NSAIDs with minimal success and will be having mid foot fusion in the near future.
The very bright side of my journey is that I can give hope to others fighting this disease – there are more and more long term survivors out there 🙂
Mary
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- January 31, 2016 at 10:52 pm
No , I had no joint pain or obvious arthritis before treatments but my Mom did have Heberdon's nodes on her fingers so I could certainly have inherited those.
It was interesting – during the pulsed IL-2, I noticed the skin on my hands suddenly looked shriveled – like they aged 20 years! It eventuallly improved after treatment but asked one of my physicians, Dr. Jeffrey Weber about it. I thought it might be dehydration but he said it was due to inflammation – and that it can last a long time.
No doubt the arthritis is due to a confluence of factors – inheritance, treatments, normal aging etc.
But, as we know too well, way better than the alternative!
Mary
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- January 31, 2016 at 10:52 pm
No , I had no joint pain or obvious arthritis before treatments but my Mom did have Heberdon's nodes on her fingers so I could certainly have inherited those.
It was interesting – during the pulsed IL-2, I noticed the skin on my hands suddenly looked shriveled – like they aged 20 years! It eventuallly improved after treatment but asked one of my physicians, Dr. Jeffrey Weber about it. I thought it might be dehydration but he said it was due to inflammation – and that it can last a long time.
No doubt the arthritis is due to a confluence of factors – inheritance, treatments, normal aging etc.
But, as we know too well, way better than the alternative!
Mary
-
- January 31, 2016 at 10:52 pm
No , I had no joint pain or obvious arthritis before treatments but my Mom did have Heberdon's nodes on her fingers so I could certainly have inherited those.
It was interesting – during the pulsed IL-2, I noticed the skin on my hands suddenly looked shriveled – like they aged 20 years! It eventuallly improved after treatment but asked one of my physicians, Dr. Jeffrey Weber about it. I thought it might be dehydration but he said it was due to inflammation – and that it can last a long time.
No doubt the arthritis is due to a confluence of factors – inheritance, treatments, normal aging etc.
But, as we know too well, way better than the alternative!
Mary
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