› Forums › General Melanoma Community › A deep sense of foreboding with new developments
- This topic has 12 replies, 3 voices, and was last updated 9 years, 11 months ago by
A. A..
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- March 30, 2016 at 10:02 am
I've had a few melanomas now and with each suspicion there is some uneasiness tinged with fear but an internal dialog that overrides the worse case scenarios. Until this time anyway.
I saw the first mole in November 2009 and it was biopsied in December. Came back positive so was excised later that December and again by a wide margin in January. Caught it early and it was not a big worry. In fact, they didn't expect any more would appear. But three years later a new mole about two inches from the first appeared. It grew faster, deeper, darker. A few excisions later, it was deemed solved. Several moles since have been precancerous, but not a worry. So, after being diligent through 2015, I slacked on checking for moles after my visit in August 2015. A factor was that I got pretty sick starting in September with an upper respiratory cold and have been fighting one bug or infection after another all winter long. So I slacked.
But yesterday the Spring weather came out and I decided to take care of getting my legs ready for skirt season. That's when I saw them. One small but very ugly mole about half an inch from the second site. And a tiny black freckle two inches from that, and 8 more tiny dark black freckles, mostly on the left leg (where all previous melanomas and precancerous moles have been) but also two on my right leg–one of which is exactly mirroring one on the left leg. I then did a thorough body check and found a new, ugly, thick, raised mole on my labia that wasn't there last summer. And half a dozen small, flat, raised moles under my breasts and one beside my belly button. None of this was present last August when I had my last exam.
And now I am beginning to question the underlying reason that I have had one bug after another since September, and the painful lymph nodes in my groin that were just on the right side in November through February but became both sides and more painful since the beginning of March. And the steadily increasing tenderness of my left breast. And that I haven't recovered my lungs full function since September.
And I can't quiet the worrisome voice anymore. Because my appointment that was scheduled for April 22nd was bumped to right away when I told them about the new moles. My instinct on whether a mole was a problem or not has so far been 100% accurate. Maybe I am being a worrywort but I just can't get my mind to find a way to not think, "This is it kid. You're done for". And the next thoughts are immediately, oh my poor girls, and their dad, and my darling dog. And I won't see my eldest graduate college next year, nor my youngest start college in the Fall, nor them get married, buy a home, have children. All the civic projects I am building in my community for the arts won't come to be. And all the children who will be less engaged with the arts because I can't make these projects materialize without me. And how visual art saved me as a child during difficult times and circumstances and how I wanted to create a legacy of beauty, expression, access. But I spent too much time doing unimportant things. And now time is up.
I do hope I am wrong. I hope that next week I find instead a renewed energy toward those things I will be sad to have not built and seen. But for tonight, I cannot sleep.
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- March 30, 2016 at 11:34 am
I cannot read your post and leave it unanswered.
I also hope that you are wrong. I will be thinking of you.
If you are not, this is by no means the end. There are an ever-increasing list of treatments. One of them may be effective for you. Even you do not find your 'magic bullet', one or more of the treatments will buy you time. More time to achieve your goals; more time for even more therapies to be developed.
In February 2015 I thought that time was up for me. I had been diagnosed as stage 4. I am so phobic of hospital and doctors that I could not imagine them offering me any treatment that would not ruin whatever little time I had left.
Yet here I am, thirteen months later. I have been treated with immunotherapy (Yervoy/Ipi) and it has shrunk my tumours. Since I sat opposite my oncologist for the first time, another type of immunotherapy had become available in the UK. I am BRAF positive, so if the melanoma cells get past my Ipi-activated T-cells and the other immunotherapy does not work, I can fall back on the kinase inhibiting pills.
I have three lines of defence and I do not even have to be admitted to hospital to get them. Isn't that amazing?
Even if the news is unwelcome, there will be similar lines of defence for you.
Thinking of you.
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- March 30, 2016 at 11:34 am
I cannot read your post and leave it unanswered.
I also hope that you are wrong. I will be thinking of you.
If you are not, this is by no means the end. There are an ever-increasing list of treatments. One of them may be effective for you. Even you do not find your 'magic bullet', one or more of the treatments will buy you time. More time to achieve your goals; more time for even more therapies to be developed.
In February 2015 I thought that time was up for me. I had been diagnosed as stage 4. I am so phobic of hospital and doctors that I could not imagine them offering me any treatment that would not ruin whatever little time I had left.
Yet here I am, thirteen months later. I have been treated with immunotherapy (Yervoy/Ipi) and it has shrunk my tumours. Since I sat opposite my oncologist for the first time, another type of immunotherapy had become available in the UK. I am BRAF positive, so if the melanoma cells get past my Ipi-activated T-cells and the other immunotherapy does not work, I can fall back on the kinase inhibiting pills.
I have three lines of defence and I do not even have to be admitted to hospital to get them. Isn't that amazing?
Even if the news is unwelcome, there will be similar lines of defence for you.
Thinking of you.
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- March 30, 2016 at 6:14 pm
MoiraM,
Thank you for this. Your story prompted me to look into what treatments have changed since my last encounter. I have avoided looking into new information about treatments because in the past I found the information not just daunting, but often quite depressing. (Better to go in cheerful with faith in treatment than to have the knowledge of miniscule success rates). Not so now, it seems. They are far more encouraging.
One of my doctors told me early on that the generally opinion was that if melanoma patients could make it to the year 2020 that their life expectancy would then become about average with the non-melanoma population due to the rapidity and success of new therapies. It seems that his statement was founded in knowledge of these new therapies success rate.
It all seems pretty encouraging now, as does your story.
Thanks again.
A. A.
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- March 30, 2016 at 6:14 pm
MoiraM,
Thank you for this. Your story prompted me to look into what treatments have changed since my last encounter. I have avoided looking into new information about treatments because in the past I found the information not just daunting, but often quite depressing. (Better to go in cheerful with faith in treatment than to have the knowledge of miniscule success rates). Not so now, it seems. They are far more encouraging.
One of my doctors told me early on that the generally opinion was that if melanoma patients could make it to the year 2020 that their life expectancy would then become about average with the non-melanoma population due to the rapidity and success of new therapies. It seems that his statement was founded in knowledge of these new therapies success rate.
It all seems pretty encouraging now, as does your story.
Thanks again.
A. A.
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- March 30, 2016 at 6:14 pm
MoiraM,
Thank you for this. Your story prompted me to look into what treatments have changed since my last encounter. I have avoided looking into new information about treatments because in the past I found the information not just daunting, but often quite depressing. (Better to go in cheerful with faith in treatment than to have the knowledge of miniscule success rates). Not so now, it seems. They are far more encouraging.
One of my doctors told me early on that the generally opinion was that if melanoma patients could make it to the year 2020 that their life expectancy would then become about average with the non-melanoma population due to the rapidity and success of new therapies. It seems that his statement was founded in knowledge of these new therapies success rate.
It all seems pretty encouraging now, as does your story.
Thanks again.
A. A.
-
- March 30, 2016 at 11:34 am
I cannot read your post and leave it unanswered.
I also hope that you are wrong. I will be thinking of you.
If you are not, this is by no means the end. There are an ever-increasing list of treatments. One of them may be effective for you. Even you do not find your 'magic bullet', one or more of the treatments will buy you time. More time to achieve your goals; more time for even more therapies to be developed.
In February 2015 I thought that time was up for me. I had been diagnosed as stage 4. I am so phobic of hospital and doctors that I could not imagine them offering me any treatment that would not ruin whatever little time I had left.
Yet here I am, thirteen months later. I have been treated with immunotherapy (Yervoy/Ipi) and it has shrunk my tumours. Since I sat opposite my oncologist for the first time, another type of immunotherapy had become available in the UK. I am BRAF positive, so if the melanoma cells get past my Ipi-activated T-cells and the other immunotherapy does not work, I can fall back on the kinase inhibiting pills.
I have three lines of defence and I do not even have to be admitted to hospital to get them. Isn't that amazing?
Even if the news is unwelcome, there will be similar lines of defence for you.
Thinking of you.
-
- March 30, 2016 at 6:01 pm
You sound like a beautiful, wonderful person. Don't let fear consume you. Many here, myself included have to face up to the possibility of not finishing our life's work, seeing children graduate, marry, and have the chance to hold a grandchild in our arms, but you must stay positive. Personally my battle to see my daughter graduate high school has gone on over three years (two to go) now since being DX Stage IV. Treatments have been mostly failures, but has at least slowed down the beast. You too can do it. You don't really know where you stand yet, and even if its bad, there are so many new treatments with so many responders. Hang in there. Be committed to living everyday and stay the positive person you clearly are at your core.
Aloha, Gary
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- March 30, 2016 at 6:01 pm
You sound like a beautiful, wonderful person. Don't let fear consume you. Many here, myself included have to face up to the possibility of not finishing our life's work, seeing children graduate, marry, and have the chance to hold a grandchild in our arms, but you must stay positive. Personally my battle to see my daughter graduate high school has gone on over three years (two to go) now since being DX Stage IV. Treatments have been mostly failures, but has at least slowed down the beast. You too can do it. You don't really know where you stand yet, and even if its bad, there are so many new treatments with so many responders. Hang in there. Be committed to living everyday and stay the positive person you clearly are at your core.
Aloha, Gary
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- March 30, 2016 at 6:01 pm
You sound like a beautiful, wonderful person. Don't let fear consume you. Many here, myself included have to face up to the possibility of not finishing our life's work, seeing children graduate, marry, and have the chance to hold a grandchild in our arms, but you must stay positive. Personally my battle to see my daughter graduate high school has gone on over three years (two to go) now since being DX Stage IV. Treatments have been mostly failures, but has at least slowed down the beast. You too can do it. You don't really know where you stand yet, and even if its bad, there are so many new treatments with so many responders. Hang in there. Be committed to living everyday and stay the positive person you clearly are at your core.
Aloha, Gary
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- March 30, 2016 at 6:30 pm
Gary,
Thank you for your kind words. I am glad to read that you have added years so far toward your goals. I hope you greatly exceed your goals.
In reading today about progress and trials for treatment methods I actually found some pretty encouraging statistics that didn't exist just a few years ago. (I am sure you are well aware of these advances as you have likely been through those treatments). The progress is quite good and for me encourages a more positive expectation now than I held late last night.
Plus a headline today related that due to the substantial growth and success in treating with a new type of immune therapies, major funding is now going to this area. We can apparently thank past President Jimmy Carter for that because of his very public total recovery from melanoma in his brain through this treatment. It seems to me that if he, at his age and with history of pancreatic cancer, can totally beat it in such a difficult to treat area, we can all likely hold out some real hope despite what staging we are at, or expected to be at, in a year or so.
Thank you again for your kind words.
A. A.
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- March 30, 2016 at 6:30 pm
Gary,
Thank you for your kind words. I am glad to read that you have added years so far toward your goals. I hope you greatly exceed your goals.
In reading today about progress and trials for treatment methods I actually found some pretty encouraging statistics that didn't exist just a few years ago. (I am sure you are well aware of these advances as you have likely been through those treatments). The progress is quite good and for me encourages a more positive expectation now than I held late last night.
Plus a headline today related that due to the substantial growth and success in treating with a new type of immune therapies, major funding is now going to this area. We can apparently thank past President Jimmy Carter for that because of his very public total recovery from melanoma in his brain through this treatment. It seems to me that if he, at his age and with history of pancreatic cancer, can totally beat it in such a difficult to treat area, we can all likely hold out some real hope despite what staging we are at, or expected to be at, in a year or so.
Thank you again for your kind words.
A. A.
-
- March 30, 2016 at 6:30 pm
Gary,
Thank you for your kind words. I am glad to read that you have added years so far toward your goals. I hope you greatly exceed your goals.
In reading today about progress and trials for treatment methods I actually found some pretty encouraging statistics that didn't exist just a few years ago. (I am sure you are well aware of these advances as you have likely been through those treatments). The progress is quite good and for me encourages a more positive expectation now than I held late last night.
Plus a headline today related that due to the substantial growth and success in treating with a new type of immune therapies, major funding is now going to this area. We can apparently thank past President Jimmy Carter for that because of his very public total recovery from melanoma in his brain through this treatment. It seems to me that if he, at his age and with history of pancreatic cancer, can totally beat it in such a difficult to treat area, we can all likely hold out some real hope despite what staging we are at, or expected to be at, in a year or so.
Thank you again for your kind words.
A. A.
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Tagged: cutaneous melanoma
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