› Forums › General Melanoma Community › now stage IV, so discouraged
- This topic has 28 replies, 13 voices, and was last updated 12 years, 11 months ago by
mrsmarilyn.
- Post
-
- May 17, 2011 at 4:19 am
I just found out today I'm now stage IV, with small lesions in my lungs.
it has not been a year since I was diagnosed, and I've had 5 surgeries.
I'm now referred to Johns Hopkins for ipi. I can NEVER go to the doctor and stay ahead of the curve. I always get worse news than I expected.
My four kids and husband are all taking it badly, and so am I.
Friends from church came over when they heard, and I am so grateful. It's prayer or get drunk, and prayer is a better example to the kids! 🙂
I just found out today I'm now stage IV, with small lesions in my lungs.
it has not been a year since I was diagnosed, and I've had 5 surgeries.
I'm now referred to Johns Hopkins for ipi. I can NEVER go to the doctor and stay ahead of the curve. I always get worse news than I expected.
My four kids and husband are all taking it badly, and so am I.
Friends from church came over when they heard, and I am so grateful. It's prayer or get drunk, and prayer is a better example to the kids! 🙂
- Replies
-
-
- May 17, 2011 at 4:35 am
I'm sorry that you've had to join our stage IV club. While it's scary as hell, don't give up or give in to this disease. You had recently posted that Univ. of Penn had suggested ippi. That means that your plan hasn't changed, just your circumstances.
There are many of us that have been long time stage IV survivors, almost 5 years here! Have the lung lesions been biopsied? I'm asking because about 5 months ago I was told the same thing. I've been scanned twice since then and they have not grown!
I know your emotions are on a rollercoaster ride and you just want to get off. Remember to take a mental break when you can and live your life and not mel 24 hours a day.
While you are planning on ippi/yervoy learn about other options. Have your tumor tested for b-raf and have blood work done to determine your hla factors.
Wishing you the best,
Linda
Stage IV since 06
-
- May 17, 2011 at 4:35 am
I'm sorry that you've had to join our stage IV club. While it's scary as hell, don't give up or give in to this disease. You had recently posted that Univ. of Penn had suggested ippi. That means that your plan hasn't changed, just your circumstances.
There are many of us that have been long time stage IV survivors, almost 5 years here! Have the lung lesions been biopsied? I'm asking because about 5 months ago I was told the same thing. I've been scanned twice since then and they have not grown!
I know your emotions are on a rollercoaster ride and you just want to get off. Remember to take a mental break when you can and live your life and not mel 24 hours a day.
While you are planning on ippi/yervoy learn about other options. Have your tumor tested for b-raf and have blood work done to determine your hla factors.
Wishing you the best,
Linda
Stage IV since 06
-
- May 17, 2011 at 5:06 am
I was completely freaked ten plus years ago when I was told that I had many tiny mets to my lungs. It's been ten plus years with no change to these tiny mets and no further spread. Ironically, one of my doctors, a kidney cancer survivor has the exact same occurance.
Live Like You've Got All Day.
Roberta
-
- May 17, 2011 at 5:06 am
I was completely freaked ten plus years ago when I was told that I had many tiny mets to my lungs. It's been ten plus years with no change to these tiny mets and no further spread. Ironically, one of my doctors, a kidney cancer survivor has the exact same occurance.
Live Like You've Got All Day.
Roberta
-
- May 17, 2011 at 6:18 am
Sorry to read of your stage IV diagnosis. It is very understandable that this comes as a shock to
you and your family.As you may have read, there are people here who have been stage IV for a long time. They have
truly defied all statistics and have amazed their doctors with their resilience.It is good that you have received a referral for treatment with Yervoy (ipi). It is a promising
new drug that has given hope to many people in your situation. So, please don't lose hope that
things will get better.You are in my prayers.
Frank from Australia
-
- May 17, 2011 at 6:18 am
Sorry to read of your stage IV diagnosis. It is very understandable that this comes as a shock to
you and your family.As you may have read, there are people here who have been stage IV for a long time. They have
truly defied all statistics and have amazed their doctors with their resilience.It is good that you have received a referral for treatment with Yervoy (ipi). It is a promising
new drug that has given hope to many people in your situation. So, please don't lose hope that
things will get better.You are in my prayers.
Frank from Australia
-
- May 17, 2011 at 6:32 am
I know how hard it is not to be discouraged but as others have said, there are lots of us with Stage IV status living our lives. I was originally diagnosed with mel on my upper left arm in 2001, had 3 recurrences and then progresssed to stage IV in 2007 via one lung met. Prior to that I did interferon, a vaccine trial, and radiation to the arm. Following the lung met I did Ipi for resected melanoma and the only recurrence since then was in the lymph nodes (one node) where it had skipped.
There is hope – we are all here to support you!
Mary
-
- May 17, 2011 at 6:32 am
I know how hard it is not to be discouraged but as others have said, there are lots of us with Stage IV status living our lives. I was originally diagnosed with mel on my upper left arm in 2001, had 3 recurrences and then progresssed to stage IV in 2007 via one lung met. Prior to that I did interferon, a vaccine trial, and radiation to the arm. Following the lung met I did Ipi for resected melanoma and the only recurrence since then was in the lymph nodes (one node) where it had skipped.
There is hope – we are all here to support you!
Mary
-
- May 17, 2011 at 11:41 am
Hi Tracy,
I'm so sorry about your stage change. Being 3b still, I can't identify with all you're feeling and going through, but I do want to offer some encouragement all the same lines as the others have. I've met a man through the Melanoma Prayer Center who has been stage 4 since 1996! That's 15 years Tracy! Problems and issues, yes, but he's here to tell it and still getting around and living life. You can, too!
I've been encouraging him to come on here and tell his story and I hope he will, but long time survivors are here. Prayers for you and your family that you'll be one, too!
Lord, in Your providential mercy, we join hearts and lift Tracy and her family to You. Your hands are the best place to be and we know she's in the best place with You holding her. We pray that You'll move in a mighty way against the melanoma that's threatening her. We pray for her spirits, Lord, that You'll bring her Your peace and hope, that You'll assure her of Your presence in this storm. That You'll still her soul. Encourage her Lord. Open doors for treatment and close the doors that will not be for her good. In Your mercy, Lord. Amen.
Grace and peace to you Friend,
Carol
-
- May 17, 2011 at 11:41 am
Hi Tracy,
I'm so sorry about your stage change. Being 3b still, I can't identify with all you're feeling and going through, but I do want to offer some encouragement all the same lines as the others have. I've met a man through the Melanoma Prayer Center who has been stage 4 since 1996! That's 15 years Tracy! Problems and issues, yes, but he's here to tell it and still getting around and living life. You can, too!
I've been encouraging him to come on here and tell his story and I hope he will, but long time survivors are here. Prayers for you and your family that you'll be one, too!
Lord, in Your providential mercy, we join hearts and lift Tracy and her family to You. Your hands are the best place to be and we know she's in the best place with You holding her. We pray that You'll move in a mighty way against the melanoma that's threatening her. We pray for her spirits, Lord, that You'll bring her Your peace and hope, that You'll assure her of Your presence in this storm. That You'll still her soul. Encourage her Lord. Open doors for treatment and close the doors that will not be for her good. In Your mercy, Lord. Amen.
Grace and peace to you Friend,
Carol
-
- May 17, 2011 at 11:48 am
Hi TracyLee,
How was this determined? CAT/PET? Was this your baseline scan?Or is there another to compare? Has, or can a biopsy be done to verify?
Good that you have been referred to John Hopkins, and that Yervoy is a option.
Michael
-
- May 17, 2011 at 1:19 pm
Hi TracyLee,
I am sorry about your progressing to stage 4 news, and that is hard on family, kids especially and all who care for you. I am stage 3a and had Ipi December 2010 to February 2011…..my right leg was full of melanoma tumors and the Ipi worked to eradicate all of them!! I did not feel many side effects either, mostly fatigue and nausea, a little non itchy rash at one point.
I am hoping Ipi works the miracle for you as it did for me!
Vermont_Donna, stage 3a
-
- May 17, 2011 at 1:19 pm
Hi TracyLee,
I am sorry about your progressing to stage 4 news, and that is hard on family, kids especially and all who care for you. I am stage 3a and had Ipi December 2010 to February 2011…..my right leg was full of melanoma tumors and the Ipi worked to eradicate all of them!! I did not feel many side effects either, mostly fatigue and nausea, a little non itchy rash at one point.
I am hoping Ipi works the miracle for you as it did for me!
Vermont_Donna, stage 3a
-
- May 17, 2011 at 1:51 pm
So sorry to hear this! I can relate… first diagnosed in Oct 2010 and lung spots found on both lungs Jan 2011. As someone else asked below – have you had a biopsy done? I had a VAT procedure done Mar 1 that did confirm melanoma. The other spots – not sure what they are since most have disappeared on my April scan. It's just such a rollercoaster ride! There are so many things that the spots could be.
5 surgeries? I shouldn't complain about the 3 I've had so far! Thoughts and prayers are with you!! Stay strong and positive (I know it's MUCH easier said than done!) Sounds like you have a great support system!
Erin
-
- May 17, 2011 at 1:51 pm
So sorry to hear this! I can relate… first diagnosed in Oct 2010 and lung spots found on both lungs Jan 2011. As someone else asked below – have you had a biopsy done? I had a VAT procedure done Mar 1 that did confirm melanoma. The other spots – not sure what they are since most have disappeared on my April scan. It's just such a rollercoaster ride! There are so many things that the spots could be.
5 surgeries? I shouldn't complain about the 3 I've had so far! Thoughts and prayers are with you!! Stay strong and positive (I know it's MUCH easier said than done!) Sounds like you have a great support system!
Erin
-
- May 17, 2011 at 4:00 pm
Hi TracyLee,
Like others, I'd like to know how this was confirmed? have you had a lung biopsy or bronchoscopy to confrim melanoma? Because, I am here to tell you that I've been told TWICE that I had lung mets when I don't. I just have icky lungs. If you are headed off to Johns Hopkins, I guess there's not much chance anyone is going to treat you for melanoma if it is not actually confirmed, but I want you to know that if it's NOT confirmed, it might not be melanoma!
That's one..two is tricker. I know (since I've been through it) how sickening and depressing it is to advance to stage IV. It's very discouraging, but it is not necessarily a death sentence! Look at how many people on this board are stage IV and NED! PLENTY. and..even those who are NOT NED, but have been stage IV for years, either stable or in treatment, but not at all dead.
I have been stage IV for two years now, and I am still playing music 3 times a week and cooking meals for the family, having houseguests, traveling around the country, blowing my dough in vegas and drinking my way through the distilleries of the British Isles.
You have a family that loves you, and, it sounds like, a community that supports you. It's shocking to discover that your cancer is getting worse, but a heart attack or a car accident could still take you ~without notice~ any day of the week. We should all live, all the time, like we might not be here tomorrow. Plan for the future, live for the day.
Good luck to you TracyLee. Please know that everyone here will keep you in their thoughts and prayers! Keep us posted
dian in spokane
-
- May 17, 2011 at 4:00 pm
Hi TracyLee,
Like others, I'd like to know how this was confirmed? have you had a lung biopsy or bronchoscopy to confrim melanoma? Because, I am here to tell you that I've been told TWICE that I had lung mets when I don't. I just have icky lungs. If you are headed off to Johns Hopkins, I guess there's not much chance anyone is going to treat you for melanoma if it is not actually confirmed, but I want you to know that if it's NOT confirmed, it might not be melanoma!
That's one..two is tricker. I know (since I've been through it) how sickening and depressing it is to advance to stage IV. It's very discouraging, but it is not necessarily a death sentence! Look at how many people on this board are stage IV and NED! PLENTY. and..even those who are NOT NED, but have been stage IV for years, either stable or in treatment, but not at all dead.
I have been stage IV for two years now, and I am still playing music 3 times a week and cooking meals for the family, having houseguests, traveling around the country, blowing my dough in vegas and drinking my way through the distilleries of the British Isles.
You have a family that loves you, and, it sounds like, a community that supports you. It's shocking to discover that your cancer is getting worse, but a heart attack or a car accident could still take you ~without notice~ any day of the week. We should all live, all the time, like we might not be here tomorrow. Plan for the future, live for the day.
Good luck to you TracyLee. Please know that everyone here will keep you in their thoughts and prayers! Keep us posted
dian in spokane
-
- May 17, 2011 at 4:30 pm
Tracy and others who need encouragement,
I found this while going through some notes I wrote for MPC. Maybe it will be helpful:
Blessings and Attitude
by Melanoma Prayer Center on Tuesday, March 29, 2011 at 10:05amWe are told to "count your blessings" and that "attitude is key." How do these adages mesh with cancer in general and melanoma in particular? I feel like Arnold Horshack on "Welcome Back Kotter" Arm waving wildly in the air while shouting "oo oo oo! I know!"
Sometimes we can get bogged down in diagnoses, statistics, preparing for ops & treatments. We can feel downright rotten, and that's putting it mildly. It's easy to throw a first-class pity party. It doesn't matter if you're the patient or the care-giver; it's very easy to find oneself with a negative outlook & attitude and counting everything but blessings.
Let's tackle "attitude" first. Let me refer you to the very first post of one of my blogs:
http://letsgivethanks.blogspot.com/2010/11/benefits-of-attitude-of-gratitude.html
Research is proving the benefits of a positive attitude and if you don't have one, how to cultivate it. I give it to you in a nutshell in that post. A positive outlook is particularly important for people with melanoma. We need as healthy a immune system as possible; we need as healthy a body as possible; we need as healthy a state of emotions as possible; and let's be candid, we need people to like & want to be around us because there are times we'll need them for care and we'll always need them because we love them…we want & need them to WANT to be around US! They'll want to be with us if we give them a good attitude to work with. Think about that!
On to counting our blessings. No matter where you are right now in your journey with melanoma and no matter how much you might want to not believe me, you have blessings to count. If you'll train yourself to focus on these blessings, you'll go a long way toward developing that positive outlook and an attitude of gratitude.
One: you're alive. That's a tremendous blessing and source of hope! No one is guaranteed another second on this earth, no matter what the state of their health. You may well live long enough to die of something totally unrelated to your melanoma. Relish the time you have. Savor being with the ones you love, like, and tolerate, and even appreciate the value of those you don't. You have the opportunity to show those around you how to deal with what life hands you and do it with style, flair, and dignity. OR, you can model anger, bitterness, and fear. The choice is yours. Choose life and choose the better way.
I have a friend in her early 40's whose husband had a major stroke in November. Their "normal" is not the same as it once was. We can all identify with that! Her new motto is:
Life isn't waiting for the storm to pass,
it's learning to dance in the rain…
Here's to dance lessons !!!!!I just love that! And her too!
Two: use this as a time to learn some valuable lessons and re-prioritize your life. I have truly come to see melanoma as quite a blessing and I know others who wouldn't trade their cancer for anything because of the lessons they've learned. I've witnessed God at work in amazing ways and felt the power of prayers that were for me. Again, I refer you to a blog post, this one is the most recent one (about melanoma) and it contains links to two posts that share my story. Please read the linked posts, especially "The Big 'C' Is Not Candy."
http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html
Three: we live in a remarkable day and time with astounding technologies and meds to help us. Without them, how many of would be alive, given our disease, to read this? I wouldn't. My melanoma had spread to my first sentinel node and all 27 were removed in 2 surgeries in latter 2008. I would have been dead along time ago if not for the knowledge available. My only grandchild is 14 months old. There's a good chance that she'll remember me instead of saying she never knew me. That's a blessing!
Bottom line: sometimes we look at the wrong things, don't see the blessings around us, and develop an attitude to match. Be wary of that trap. While counting pills & doses, count blessings. While keeping track of appointments, keep tabs on your attitude.
If nothing else, BE the blessing you seek.
Colossians 3:14-16 (New Living Translation)
14 Above all, clothe yourselves with love, which binds us all together in perfect harmony. 15 And let the peace that comes from Christ rule in your hearts. For as members of one body you are called to live in peace. And always be thankful. 16 Let the message about Christ, in all its richness, fill your lives. Teach and counsel each other with all the wisdom he gives. Sing psalms and hymns and spiritual songs to God with thankful hearts.
Lord, help me cultivate an attitude of gratitude and to count the blessings that you have given me. They are there, open my eyes to them and to the work you are doing in my life. Grant me your peace, even during this trying time, grant me your peace. Help me turn to you for strength and guidance and grant me ears to hear your voice leading me in the ways of what to do in treating my melanoma. My body is not like anyone elses and I need wisdom on what path to go down. Lord, in your mercy. Amen.
Hope that helps in some small way.
Grace and peace,
Carol
-
- May 17, 2011 at 4:30 pm
Tracy and others who need encouragement,
I found this while going through some notes I wrote for MPC. Maybe it will be helpful:
Blessings and Attitude
by Melanoma Prayer Center on Tuesday, March 29, 2011 at 10:05amWe are told to "count your blessings" and that "attitude is key." How do these adages mesh with cancer in general and melanoma in particular? I feel like Arnold Horshack on "Welcome Back Kotter" Arm waving wildly in the air while shouting "oo oo oo! I know!"
Sometimes we can get bogged down in diagnoses, statistics, preparing for ops & treatments. We can feel downright rotten, and that's putting it mildly. It's easy to throw a first-class pity party. It doesn't matter if you're the patient or the care-giver; it's very easy to find oneself with a negative outlook & attitude and counting everything but blessings.
Let's tackle "attitude" first. Let me refer you to the very first post of one of my blogs:
http://letsgivethanks.blogspot.com/2010/11/benefits-of-attitude-of-gratitude.html
Research is proving the benefits of a positive attitude and if you don't have one, how to cultivate it. I give it to you in a nutshell in that post. A positive outlook is particularly important for people with melanoma. We need as healthy a immune system as possible; we need as healthy a body as possible; we need as healthy a state of emotions as possible; and let's be candid, we need people to like & want to be around us because there are times we'll need them for care and we'll always need them because we love them…we want & need them to WANT to be around US! They'll want to be with us if we give them a good attitude to work with. Think about that!
On to counting our blessings. No matter where you are right now in your journey with melanoma and no matter how much you might want to not believe me, you have blessings to count. If you'll train yourself to focus on these blessings, you'll go a long way toward developing that positive outlook and an attitude of gratitude.
One: you're alive. That's a tremendous blessing and source of hope! No one is guaranteed another second on this earth, no matter what the state of their health. You may well live long enough to die of something totally unrelated to your melanoma. Relish the time you have. Savor being with the ones you love, like, and tolerate, and even appreciate the value of those you don't. You have the opportunity to show those around you how to deal with what life hands you and do it with style, flair, and dignity. OR, you can model anger, bitterness, and fear. The choice is yours. Choose life and choose the better way.
I have a friend in her early 40's whose husband had a major stroke in November. Their "normal" is not the same as it once was. We can all identify with that! Her new motto is:
Life isn't waiting for the storm to pass,
it's learning to dance in the rain…
Here's to dance lessons !!!!!I just love that! And her too!
Two: use this as a time to learn some valuable lessons and re-prioritize your life. I have truly come to see melanoma as quite a blessing and I know others who wouldn't trade their cancer for anything because of the lessons they've learned. I've witnessed God at work in amazing ways and felt the power of prayers that were for me. Again, I refer you to a blog post, this one is the most recent one (about melanoma) and it contains links to two posts that share my story. Please read the linked posts, especially "The Big 'C' Is Not Candy."
http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html
Three: we live in a remarkable day and time with astounding technologies and meds to help us. Without them, how many of would be alive, given our disease, to read this? I wouldn't. My melanoma had spread to my first sentinel node and all 27 were removed in 2 surgeries in latter 2008. I would have been dead along time ago if not for the knowledge available. My only grandchild is 14 months old. There's a good chance that she'll remember me instead of saying she never knew me. That's a blessing!
Bottom line: sometimes we look at the wrong things, don't see the blessings around us, and develop an attitude to match. Be wary of that trap. While counting pills & doses, count blessings. While keeping track of appointments, keep tabs on your attitude.
If nothing else, BE the blessing you seek.
Colossians 3:14-16 (New Living Translation)
14 Above all, clothe yourselves with love, which binds us all together in perfect harmony. 15 And let the peace that comes from Christ rule in your hearts. For as members of one body you are called to live in peace. And always be thankful. 16 Let the message about Christ, in all its richness, fill your lives. Teach and counsel each other with all the wisdom he gives. Sing psalms and hymns and spiritual songs to God with thankful hearts.
Lord, help me cultivate an attitude of gratitude and to count the blessings that you have given me. They are there, open my eyes to them and to the work you are doing in my life. Grant me your peace, even during this trying time, grant me your peace. Help me turn to you for strength and guidance and grant me ears to hear your voice leading me in the ways of what to do in treating my melanoma. My body is not like anyone elses and I need wisdom on what path to go down. Lord, in your mercy. Amen.
Hope that helps in some small way.
Grace and peace,
Carol
-
- May 17, 2011 at 4:31 pm
What can I add that hasn't already been said?
Trust in your God, read the accounts of the Stage 4s on this site, HOPE. This is no time to give up hope,
The following books have helped me SO MUCH.
"When God and Cancer Meet" by Lynn Eib, she also has a website
"Finding the Light in Cancer's Shadow" by Lynn Eib
"A Reason for Hope" by Michael Barry, Chaplain for Cancer Centers of America
"A Season for Hope" by Michael Barry.
I stumbled upon the Michael Barry books in my small town library. I then ordered them from our local Christian Bookstore. Might want to check Amazon or Ebay.
My sister, a cancer survivor, sent me the books by Lyn Eib.
They have made a huge difference in my fight against this beast.
Praying for you Tracy,
Nicki
-
- May 17, 2011 at 5:47 pm
I'm also very sorry that you 're received this bad news, however, NEVER give up. 2 weeks ago I failed a screening process for an ipi trial because of tiny nodules in my lungs. I was told they are too small to tell what they are, but they are concerned it's melanoma. I'm going for another scan in 2 weeks to see if they've grown, but I'm remaining hopeful. If the news isn't good, I will likely be devastated as well since I was only diagnosed in January of this year.
I've been very surprised to learn that being Stage 4 doesn't necessarily mean a death sentence. Lots of people here are thriving and living with Stage 4 either stable or NED. Medicine is incredible right now and you have to believe that not all is lost.
Continue to be strong and never give up.
Lisa
-
- May 17, 2011 at 5:47 pm
I'm also very sorry that you 're received this bad news, however, NEVER give up. 2 weeks ago I failed a screening process for an ipi trial because of tiny nodules in my lungs. I was told they are too small to tell what they are, but they are concerned it's melanoma. I'm going for another scan in 2 weeks to see if they've grown, but I'm remaining hopeful. If the news isn't good, I will likely be devastated as well since I was only diagnosed in January of this year.
I've been very surprised to learn that being Stage 4 doesn't necessarily mean a death sentence. Lots of people here are thriving and living with Stage 4 either stable or NED. Medicine is incredible right now and you have to believe that not all is lost.
Continue to be strong and never give up.
Lisa
-
- May 17, 2011 at 4:31 pm
What can I add that hasn't already been said?
Trust in your God, read the accounts of the Stage 4s on this site, HOPE. This is no time to give up hope,
The following books have helped me SO MUCH.
"When God and Cancer Meet" by Lynn Eib, she also has a website
"Finding the Light in Cancer's Shadow" by Lynn Eib
"A Reason for Hope" by Michael Barry, Chaplain for Cancer Centers of America
"A Season for Hope" by Michael Barry.
I stumbled upon the Michael Barry books in my small town library. I then ordered them from our local Christian Bookstore. Might want to check Amazon or Ebay.
My sister, a cancer survivor, sent me the books by Lyn Eib.
They have made a huge difference in my fight against this beast.
Praying for you Tracy,
Nicki
-
- May 21, 2011 at 3:06 pm
You will get ahead of this curve. My brother had spots on lungs-with GSK/MEK/BRAF – he has reduced from 7 tumors including lungs- to only one on pelvic. You can do it-Stage IV- can very possible lead to NED . Lots of new treatments out there- and you are in good hands with your DR. Please stay strong – you will see amazing results.
Best wishes,
MrsMarilyn
Sister of Gary (stage IV)
-
- May 21, 2011 at 3:06 pm
You will get ahead of this curve. My brother had spots on lungs-with GSK/MEK/BRAF – he has reduced from 7 tumors including lungs- to only one on pelvic. You can do it-Stage IV- can very possible lead to NED . Lots of new treatments out there- and you are in good hands with your DR. Please stay strong – you will see amazing results.
Best wishes,
MrsMarilyn
Sister of Gary (stage IV)
-
- You must be logged in to reply to this topic.