› Forums › General Melanoma Community › Stage 3A – NED scans today
- This topic has 15 replies, 4 voices, and was last updated 7 years, 10 months ago by
youngann.
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- June 14, 2016 at 9:20 pm
Just wanted to chime in with some more positive news. My 1.75 year PET scan was completely clear. Don't post as often because my "expertise" was Interferon and my experience has almost become "obsolete"….which I think would be considered universally good news.
Another happy news story….I met a patient in the waiting room and she told me she was diagnosed two years ago as a stage 4. Her original prognosis was the standard 8-11 months to live. She failed on Ipi but was doing great on Opdivo with many tumors retreating. I had never met her before but she looked and sounded like she was doing great. Just think, a couple of years ago…I would not have met her at all at 2 years into stage 4.
I don't think Cure is the right word yet…but hope is there. I know there are some folks fighting for their lives out there (and we have lost some). For the new folks here, do your homework. The new stuff has real promise but it also carries significant challenges if not managed by a real Melanoma specialist.
For those that are Stage 1-3, I think it is safe to say melanoma is no longer a death sentence. But you need to be vigilant. Things like scan anxiety are very real. Your life will never be the same after your diagnosis.
Best wishes.
Michel
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- June 14, 2016 at 10:06 pm
Thank you Michel. Just received my stage IIIA diagnosis today and your post takes a little of the fear away.
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- June 14, 2016 at 10:34 pm
Ann – "welcome" – but also very sorry that you are here. A couple of things that you will see and hear repeated over and over.
This forum is dominated by Stage 4 patients (and rightfully so). They are the one fighting the big fight and trying to keep in front of this nasty disease. So don't get discouraged by all of the "bad and scary" news/commentary.
Second, every single person on this forum will tell you NOT to be treated by your local oncologist. Find a true melanoma specialist…one that sees patients like you all day long, every day of the week. Almost everything that was relevant 2 years ago…is obsolete in terms of the standard of care. The upside is that the disease has become much more survivable…but those treatments are not risk free. (in fact there are some treatments with real promise that many/most patients can not sustain the "full" dosage/frequency and the impacts while largely manageable, there is some permanent damage being sustained)
Third, don't be shy. There are many "experts" on here that have more pragmatic experience than the actual doctors. Folks here want to help with your questions….however simple or complex they may be.
And finally…don't try to do this alone. Find a support network. My wife takes me to every treatment and doctor visit. I met a guy that was also at the exact same place in his journey. Our stories are completely different but at the same time, exactly the same.
I know you are scared…I have never had to deal with something that had survival rates…let alone my survival rate.
A genuine welcome and best wishes.
Michel
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- June 14, 2016 at 10:34 pm
Ann – "welcome" – but also very sorry that you are here. A couple of things that you will see and hear repeated over and over.
This forum is dominated by Stage 4 patients (and rightfully so). They are the one fighting the big fight and trying to keep in front of this nasty disease. So don't get discouraged by all of the "bad and scary" news/commentary.
Second, every single person on this forum will tell you NOT to be treated by your local oncologist. Find a true melanoma specialist…one that sees patients like you all day long, every day of the week. Almost everything that was relevant 2 years ago…is obsolete in terms of the standard of care. The upside is that the disease has become much more survivable…but those treatments are not risk free. (in fact there are some treatments with real promise that many/most patients can not sustain the "full" dosage/frequency and the impacts while largely manageable, there is some permanent damage being sustained)
Third, don't be shy. There are many "experts" on here that have more pragmatic experience than the actual doctors. Folks here want to help with your questions….however simple or complex they may be.
And finally…don't try to do this alone. Find a support network. My wife takes me to every treatment and doctor visit. I met a guy that was also at the exact same place in his journey. Our stories are completely different but at the same time, exactly the same.
I know you are scared…I have never had to deal with something that had survival rates…let alone my survival rate.
A genuine welcome and best wishes.
Michel
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- June 14, 2016 at 10:34 pm
Ann – "welcome" – but also very sorry that you are here. A couple of things that you will see and hear repeated over and over.
This forum is dominated by Stage 4 patients (and rightfully so). They are the one fighting the big fight and trying to keep in front of this nasty disease. So don't get discouraged by all of the "bad and scary" news/commentary.
Second, every single person on this forum will tell you NOT to be treated by your local oncologist. Find a true melanoma specialist…one that sees patients like you all day long, every day of the week. Almost everything that was relevant 2 years ago…is obsolete in terms of the standard of care. The upside is that the disease has become much more survivable…but those treatments are not risk free. (in fact there are some treatments with real promise that many/most patients can not sustain the "full" dosage/frequency and the impacts while largely manageable, there is some permanent damage being sustained)
Third, don't be shy. There are many "experts" on here that have more pragmatic experience than the actual doctors. Folks here want to help with your questions….however simple or complex they may be.
And finally…don't try to do this alone. Find a support network. My wife takes me to every treatment and doctor visit. I met a guy that was also at the exact same place in his journey. Our stories are completely different but at the same time, exactly the same.
I know you are scared…I have never had to deal with something that had survival rates…let alone my survival rate.
A genuine welcome and best wishes.
Michel
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- June 15, 2016 at 9:09 pm
Ann
i am very sorry to hear of your results I have been following your journey since we seem to be only days apart at each step. My results appt from my WLE and SLNB is tomorrow.
Did your doctor give you any indication of the next steps?
This whole journey is so terrifying I'm glad to listen if you ever want to email me directly my address is [email protected]
Kim
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- June 15, 2016 at 10:18 pm
Hi Kim.
Next week I'm to have a brain MRI and full body PET/CT scan. If they're all clear, then doc recommends removal of axilliary lymph nodes and surrounding tissue. – tentatively scheduled for 6/27/16
He only took one node during the SLNB and it was riddled with cancer and also many cells found in the surrounding tissues. There was also more cancer found at the initial biopsy site – another 2mm depth in addition to the 2.5mm taken in the original biopsy.
After that, I'll start on Yervoy. Of course, if the scans show any hot spots, it'll be a whole different ballgame.
I pray that the news you receive tomorrow is much better. I'll be keeping you in my thoughts.
::Hugs::
Ann
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- June 15, 2016 at 10:18 pm
Hi Kim.
Next week I'm to have a brain MRI and full body PET/CT scan. If they're all clear, then doc recommends removal of axilliary lymph nodes and surrounding tissue. – tentatively scheduled for 6/27/16
He only took one node during the SLNB and it was riddled with cancer and also many cells found in the surrounding tissues. There was also more cancer found at the initial biopsy site – another 2mm depth in addition to the 2.5mm taken in the original biopsy.
After that, I'll start on Yervoy. Of course, if the scans show any hot spots, it'll be a whole different ballgame.
I pray that the news you receive tomorrow is much better. I'll be keeping you in my thoughts.
::Hugs::
Ann
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- June 15, 2016 at 10:18 pm
Hi Kim.
Next week I'm to have a brain MRI and full body PET/CT scan. If they're all clear, then doc recommends removal of axilliary lymph nodes and surrounding tissue. – tentatively scheduled for 6/27/16
He only took one node during the SLNB and it was riddled with cancer and also many cells found in the surrounding tissues. There was also more cancer found at the initial biopsy site – another 2mm depth in addition to the 2.5mm taken in the original biopsy.
After that, I'll start on Yervoy. Of course, if the scans show any hot spots, it'll be a whole different ballgame.
I pray that the news you receive tomorrow is much better. I'll be keeping you in my thoughts.
::Hugs::
Ann
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- June 15, 2016 at 9:09 pm
Ann
i am very sorry to hear of your results I have been following your journey since we seem to be only days apart at each step. My results appt from my WLE and SLNB is tomorrow.
Did your doctor give you any indication of the next steps?
This whole journey is so terrifying I'm glad to listen if you ever want to email me directly my address is [email protected]
Kim
-
- June 15, 2016 at 9:09 pm
Ann
i am very sorry to hear of your results I have been following your journey since we seem to be only days apart at each step. My results appt from my WLE and SLNB is tomorrow.
Did your doctor give you any indication of the next steps?
This whole journey is so terrifying I'm glad to listen if you ever want to email me directly my address is [email protected]
Kim
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