› Forums › General Melanoma Community › Sharing some encouragement: Clear scans (Stage IV)
- This topic has 62 replies, 27 voices, and was last updated 14 years, 2 months ago by killmel.
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- September 15, 2010 at 5:43 am
I feel very fortunate to say that the clear scan report I received today marks the two year anniversay since my last recurrence. Even more significant is that it's 3 years since I progressed to stage IV via a lung met with no further incidents internally.
When I was diagnosed almost 10 years ago, I could never have imagined looking ahead this far and believe I would still be here. But 5 recurrences later coupled with INF, vaccine trial, radiation, Ipi, and pulsed IL-2, here I am feeling very humbled and blessed.
I feel very fortunate to say that the clear scan report I received today marks the two year anniversay since my last recurrence. Even more significant is that it's 3 years since I progressed to stage IV via a lung met with no further incidents internally.
When I was diagnosed almost 10 years ago, I could never have imagined looking ahead this far and believe I would still be here. But 5 recurrences later coupled with INF, vaccine trial, radiation, Ipi, and pulsed IL-2, here I am feeling very humbled and blessed.
Over the years, this board has been a lifeline to share the best and worst case scenarios of this devastating disease, laughter and tears, and most of all . . amazing .friendships. This is a difficult journey to be sure, but I can attest to the fact there is hope out there and the prospect of living with the beast as a manageable disease.
And now .. .it's time for a happy dance!! 🙂 🙂
Mary
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- September 15, 2010 at 9:05 am
Congratualtions Mary. I depend on these Huge glimpses of hope. I am really struggling with mine right now even though I received great scans last week also. I can't seem to get out of my own head. My head is my biggest battle!
Thank you for reminding me that HOPE is what it is all about.
Take care and have fun doing the happy dance.
Shelly in SW
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- September 15, 2010 at 9:10 am
Hi Mary,
Did I ever need to read your post…thanks! So happy for you and hopeful for me at the same time…..Keep on dancing!
Hugs,
Vermont_Donna
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- September 15, 2010 at 9:10 am
Hi Mary,
Did I ever need to read your post…thanks! So happy for you and hopeful for me at the same time…..Keep on dancing!
Hugs,
Vermont_Donna
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- September 15, 2010 at 9:05 am
Congratualtions Mary. I depend on these Huge glimpses of hope. I am really struggling with mine right now even though I received great scans last week also. I can't seem to get out of my own head. My head is my biggest battle!
Thank you for reminding me that HOPE is what it is all about.
Take care and have fun doing the happy dance.
Shelly in SW
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- September 15, 2010 at 11:36 am
Mary,
That is fantastic news!!!! What a great milestone to accomplish – 2 years since your last recurrance!
You had been posting while doing the pulsed IL2, are you finished with it now? Weren't you NED when you started that treatment? I am facing decision time next week and am interested in this.
Doing the happy dance for you, we needed some good news to be shared around here!!
Linda
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- September 16, 2010 at 4:17 am
Hi Linda,
I did pulsed IL-2 once a month for six months last year (March – August). It required a 2 day stay in the hospital and really was an abbreviated version of the year long maintneance treatment that is often adminstered after biochemo (I didn't need to do that).
It was a tough choice as I had been waiting to get into another clinical trial that didn't materialize and since I had always done some kind of adjuvant treatment after resectable reucurrences, decided to do it.
Honestly, I haven't heard of anyone else doing this but I'm sure there are a few other of us crazy people out there 🙂 🙂
Wishing you the best of luck with your treatment decisions . .
Mary
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- September 16, 2010 at 4:17 am
Hi Linda,
I did pulsed IL-2 once a month for six months last year (March – August). It required a 2 day stay in the hospital and really was an abbreviated version of the year long maintneance treatment that is often adminstered after biochemo (I didn't need to do that).
It was a tough choice as I had been waiting to get into another clinical trial that didn't materialize and since I had always done some kind of adjuvant treatment after resectable reucurrences, decided to do it.
Honestly, I haven't heard of anyone else doing this but I'm sure there are a few other of us crazy people out there 🙂 🙂
Wishing you the best of luck with your treatment decisions . .
Mary
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- September 25, 2010 at 5:29 pm
Hi I am a stage IV Biochemotherapy survivor and would love to tell you about it. I am 4 years NED. iI have my story on my profile too.
~Suzanne
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- September 25, 2010 at 5:29 pm
Hi I am a stage IV Biochemotherapy survivor and would love to tell you about it. I am 4 years NED. iI have my story on my profile too.
~Suzanne
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- September 15, 2010 at 11:36 am
Mary,
That is fantastic news!!!! What a great milestone to accomplish – 2 years since your last recurrance!
You had been posting while doing the pulsed IL2, are you finished with it now? Weren't you NED when you started that treatment? I am facing decision time next week and am interested in this.
Doing the happy dance for you, we needed some good news to be shared around here!!
Linda
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- September 15, 2010 at 1:00 pm
Mary,
Words can not express how happy this news makes me!!!! Are you still dancing? I'm still smiling…..
Stay Strong
KingStage IV 7/05 Liver mets
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- September 15, 2010 at 8:54 pm
Love it Mary – trying to get to San Ramon in late Oct or Nov. will keep you posted – a celebration bfast, lunch or dinner is in order! Love,Leni
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- September 25, 2010 at 5:28 pm
Hi Leni, I live in Danville, and would love to be in on the celebration too! I am a stage IV survivor who completed Biochemotherapy, and pulse for 18 months and I am 4 years NED!
~Suzanne
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- September 25, 2010 at 5:28 pm
Hi Leni, I live in Danville, and would love to be in on the celebration too! I am a stage IV survivor who completed Biochemotherapy, and pulse for 18 months and I am 4 years NED!
~Suzanne
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- September 15, 2010 at 8:54 pm
Love it Mary – trying to get to San Ramon in late Oct or Nov. will keep you posted – a celebration bfast, lunch or dinner is in order! Love,Leni
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- September 15, 2010 at 2:25 pm
Great news..What is "pulsed IL2"???Thanks & good luck!
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- September 16, 2010 at 4:20 am
Pulsed IL-2 is usually a maintenance treatment administered after biochemotherapy. My Dr. and I decided to do a shorter version (it is usually 12 months) of 6 months – a two day hospital stay once a month X 6. Three different doses are administered over a period of 42 hours. It is not as intense as high dose IL-2 but does require careful monitoring while being treated.
Hope that helps . .
Mary
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- September 16, 2010 at 4:20 am
Pulsed IL-2 is usually a maintenance treatment administered after biochemotherapy. My Dr. and I decided to do a shorter version (it is usually 12 months) of 6 months – a two day hospital stay once a month X 6. Three different doses are administered over a period of 42 hours. It is not as intense as high dose IL-2 but does require careful monitoring while being treated.
Hope that helps . .
Mary
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- September 15, 2010 at 4:20 pm
Mary,
Great to read your good news!! You and John and both making things better today.
May you never see mel again.
Rebecca
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- September 15, 2010 at 4:20 pm
Mary,
Great to read your good news!! You and John and both making things better today.
May you never see mel again.
Rebecca
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- September 15, 2010 at 5:27 pm
That is great news and I needed to hear it. Thank you for sharing.
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- September 15, 2010 at 5:27 pm
That is great news and I needed to hear it. Thank you for sharing.
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- September 15, 2010 at 9:03 pm
Hi Mary
i am so happy to hear the news, you give hope to so many.
best wishes
James
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- September 15, 2010 at 9:03 pm
Hi Mary
i am so happy to hear the news, you give hope to so many.
best wishes
James
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- September 16, 2010 at 4:36 am
Hi Mary,
Your story is most inspiring and encouraging to many of us. I hope to be where you are now, but have a long way to go. Let me be the 3rd Jim in a row here to send many good wishes!!!!
Best,
Jim in Denver
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- September 16, 2010 at 4:36 am
Hi Mary,
Your story is most inspiring and encouraging to many of us. I hope to be where you are now, but have a long way to go. Let me be the 3rd Jim in a row here to send many good wishes!!!!
Best,
Jim in Denver
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- September 16, 2010 at 3:31 pm
So glad to hear!! My dancing shoes are on!!
Lauren (mom to Jenna)
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- September 16, 2010 at 3:31 pm
So glad to hear!! My dancing shoes are on!!
Lauren (mom to Jenna)
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- September 17, 2010 at 3:06 am
Mary,
Thanks so much for sharing your good news. My history is very similar to yours, but I am in the middle of it instead of at the successfull end of it! I am currently under treatment at the Angeles Clinic (John Wayne Cancer Center) in Los Angeles. I currently have two tumors, both about 14 mm, in my left lung, and have had several others removed surgically over the last 4 years. I just finished a clinical trial for combo of Taxotere and YM 155 which slowed growth but did stop it. Monday I will start on a new trial, called VEGF, with a drug that works to stop the growth of new blood vessels to tumors. I know that, as time goes by, we'll find the right combination of meds. We'll be trying IPI next, if this new trial med doesn't help.
Again, thanks for sharing your encouraging news!
Bob (from Visalia)
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- September 25, 2010 at 7:03 pm
Hi Bob,
I am just curious why your doctor just does not put you on IPI???
There is some discussion on clinical trial ethics & it seems like you are trying all these "new" trial which is great for furthering sciences & helping with research, however, why are you not just doing IPI because it has proven to have my long term durable response against melanoma??
What does your doctor say about IPI???
Thanks for replying
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- September 25, 2010 at 7:03 pm
Hi Bob,
I am just curious why your doctor just does not put you on IPI???
There is some discussion on clinical trial ethics & it seems like you are trying all these "new" trial which is great for furthering sciences & helping with research, however, why are you not just doing IPI because it has proven to have my long term durable response against melanoma??
What does your doctor say about IPI???
Thanks for replying
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- September 17, 2010 at 3:06 am
Mary,
Thanks so much for sharing your good news. My history is very similar to yours, but I am in the middle of it instead of at the successfull end of it! I am currently under treatment at the Angeles Clinic (John Wayne Cancer Center) in Los Angeles. I currently have two tumors, both about 14 mm, in my left lung, and have had several others removed surgically over the last 4 years. I just finished a clinical trial for combo of Taxotere and YM 155 which slowed growth but did stop it. Monday I will start on a new trial, called VEGF, with a drug that works to stop the growth of new blood vessels to tumors. I know that, as time goes by, we'll find the right combination of meds. We'll be trying IPI next, if this new trial med doesn't help.
Again, thanks for sharing your encouraging news!
Bob (from Visalia)
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- September 17, 2010 at 3:52 am
Mary,
Great news!! May your happy dance continue forever!
Krista
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- September 17, 2010 at 3:52 am
Mary,
Great news!! May your happy dance continue forever!
Krista
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- September 17, 2010 at 2:45 pm
I am very happy to here your news, Congratulations, I just finished my second round of IL-2 (I've got my fingers crossed). Take Care. -Kevin
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- September 17, 2010 at 2:45 pm
I am very happy to here your news, Congratulations, I just finished my second round of IL-2 (I've got my fingers crossed). Take Care. -Kevin
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- September 24, 2010 at 1:41 am
Mary
Your have truely been blessed~~~~ Thank you for your encouragement we really needed it. Been kind of a rough
week and upcoming scans in about 1 1/2 weeks.
Linda/Kentucky
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- September 24, 2010 at 1:41 am
Mary
Your have truely been blessed~~~~ Thank you for your encouragement we really needed it. Been kind of a rough
week and upcoming scans in about 1 1/2 weeks.
Linda/Kentucky
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- September 25, 2010 at 5:25 pm
Mary, as you know I hardly go on here, but just read your message. I am THRILLED to hear the news!!! Dance, dance, dance! Woo hoo! You have been a great friend and we need to celebrate and get together that California lunch gathering we were talking about.
I saw someone posted about getting together in San Ramon. Since you know so many on this board, I'm sure we can get the word out. Let's plan it!
Next week I will be in Maui, but when I get home, let's plan. I can put the word out on Facebook, and you can get the word out on this board.
Again, I am so happy to hear your news!
~Suzanne
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- September 25, 2010 at 5:25 pm
Mary, as you know I hardly go on here, but just read your message. I am THRILLED to hear the news!!! Dance, dance, dance! Woo hoo! You have been a great friend and we need to celebrate and get together that California lunch gathering we were talking about.
I saw someone posted about getting together in San Ramon. Since you know so many on this board, I'm sure we can get the word out. Let's plan it!
Next week I will be in Maui, but when I get home, let's plan. I can put the word out on Facebook, and you can get the word out on this board.
Again, I am so happy to hear your news!
~Suzanne
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