› Forums › General Melanoma Community › Stage IV . . . One Year Later
- This topic has 51 replies, 14 voices, and was last updated 9 years, 9 months ago by
Jubes.
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- August 2, 2014 at 11:14 am
One year ago today, I started on the GSK combo (Tafinlar & Mekinist) as my initial treatment following Stage IV diagnosis. Just a few days prior, I had been rejected by the NIH for their TIL trial because I wouldn't survive it–heavy and aggressive tumor burden. The clear implication was that if the BRAFi didn't work, I was toast. That ride home from Bethesda was the longest few hours of my life. My mind was racing. The guilt of ruining the lives of my wife and kids (then 4 and 2 months), the regret of not having acted sooner on that mole taking a odd shape ten years before, the fear of disability and death. I'm not sure which was worse–my tumor burden or the psychological burden!
In any case, at that point, while I was relatively asymptomatic just a few weeks prior, I was fatigued, had little use of my lower left arm as a result of a bone tumor and had just been diagnosed with a brain met. So, I started on the GSK combo, had the bone tumor in my arm radiated and celebrated my 40th birthday having a gamma knife procedure for the brain met. Below is my initial post on MPIP just a week or so after starting the GSK combo.
The GSK combo worked quickly–miracle drugs in my case. They reduced my tumor burden dramatically and gave me my (new, melanoma-altered) life back. (The radiation for my bone tumor and gamma knife worked too.) In addition to the GSK combo, I've since taken my shot with ipi. I'm probably not a responder. My scans have been stable since ipi and I continue with the combo. Although I'm far from NED (I still have 12 or so tumors in my liver), I feel fine–really well actually. I lead a normal (melanoma-altered) life. I work full-time, spend time with my family, run errands, go to sporting events, concerts, etc.
I'm certainly not one of those "cancer is a gift" people, but in some ways, this year has been one of the best years of my life. Cancer makes everything so much more urgent and vivid. I'm grateful for having had another year of watching my kids grow, of being with my wife, of being here for the simple things, like the change of the seasons, a great cup of coffee, etc. I'm grateful for another year of work, of helping people, of feeling productive. And, I'm grateful for feeling relativley well for most of this year.
I'm keenly aware that I'm now on the right of the median of progression-free survival on the GSK combo. So, I try not to take anything for granted. I read your posts (thanks for those–I continue to learn so much from you) and I continue to work on Plans B, C, etc. And, I continue to enjoy my time.
Best, Mat
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- August 2, 2014 at 1:32 pm
Great post Mat. I noticed my reply to your post from a year ago. It's certainly been a year to remember for both you and I. Here's hoping for not just many more years but many more years lived well.
Brian
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- August 3, 2014 at 2:34 am
Awww…Mat,
Thanks for that. I loved your post. You put it all very well. Never will be able to say that I am "Sooo thankful I have melanoma!", but my melanoma-altered normal (great characterization!!!) has certainly taught me a great deal!!! I work hard to appreciate every minute! Glad you have had this year to share with your loved ones and all of us! Hang in there. I think you've got a lot of years to go!!!
WIshing my best to you and yours, Celeste
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- August 3, 2014 at 2:34 am
Awww…Mat,
Thanks for that. I loved your post. You put it all very well. Never will be able to say that I am "Sooo thankful I have melanoma!", but my melanoma-altered normal (great characterization!!!) has certainly taught me a great deal!!! I work hard to appreciate every minute! Glad you have had this year to share with your loved ones and all of us! Hang in there. I think you've got a lot of years to go!!!
WIshing my best to you and yours, Celeste
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- August 3, 2014 at 2:34 am
Awww…Mat,
Thanks for that. I loved your post. You put it all very well. Never will be able to say that I am "Sooo thankful I have melanoma!", but my melanoma-altered normal (great characterization!!!) has certainly taught me a great deal!!! I work hard to appreciate every minute! Glad you have had this year to share with your loved ones and all of us! Hang in there. I think you've got a lot of years to go!!!
WIshing my best to you and yours, Celeste
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- August 2, 2014 at 1:57 pm
Hi Mat, great news and thanks for sharing your story!!!! I will be watching for next years update!!!! Ed
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- August 2, 2014 at 1:57 pm
Hi Mat, great news and thanks for sharing your story!!!! I will be watching for next years update!!!! Ed
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- August 2, 2014 at 1:57 pm
Hi Mat, great news and thanks for sharing your story!!!! I will be watching for next years update!!!! Ed
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- August 2, 2014 at 3:46 pm
Hi Mat,
I want to see you here for many many years.
I have read your first post now and i have to tell you that i was also stage 1 0.35 mm but ulcerated, anyway i have few possibilities to get stage iv but seven years later it happened. I think the doctors have to offer something for stage i to try to avoid these things. For us is too late but many other are going to go through thi, then i hope something change.
Good luck
Juan
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- August 2, 2014 at 3:46 pm
Hi Mat,
I want to see you here for many many years.
I have read your first post now and i have to tell you that i was also stage 1 0.35 mm but ulcerated, anyway i have few possibilities to get stage iv but seven years later it happened. I think the doctors have to offer something for stage i to try to avoid these things. For us is too late but many other are going to go through thi, then i hope something change.
Good luck
Juan
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- August 2, 2014 at 3:46 pm
Hi Mat,
I want to see you here for many many years.
I have read your first post now and i have to tell you that i was also stage 1 0.35 mm but ulcerated, anyway i have few possibilities to get stage iv but seven years later it happened. I think the doctors have to offer something for stage i to try to avoid these things. For us is too late but many other are going to go through thi, then i hope something change.
Good luck
Juan
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- August 2, 2014 at 4:07 pm
Mat was in this video, too, http://melanomainternational.org/events-webinar/patient-experience-video
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- August 2, 2014 at 4:07 pm
Mat was in this video, too, http://melanomainternational.org/events-webinar/patient-experience-video
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- August 2, 2014 at 4:07 pm
Mat was in this video, too, http://melanomainternational.org/events-webinar/patient-experience-video
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- August 3, 2014 at 11:59 am
So happy to hear you're doing well! Happy "anniversary"! This disease certainly does change your perspective a bit. I failed Ipi last summer while I was teaching a summer college course. I was marveling this year as the same course was going on again how I managed to teach that course last year with both WBR and Ipi side effects (which as a combo weren't so great). I think my stubbornness was an asset, and may be at least part of why I'm still kicking around- I just refuse to die. Sounds like maybe you're a little similar?
Best of luck to you
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- August 3, 2014 at 11:59 am
So happy to hear you're doing well! Happy "anniversary"! This disease certainly does change your perspective a bit. I failed Ipi last summer while I was teaching a summer college course. I was marveling this year as the same course was going on again how I managed to teach that course last year with both WBR and Ipi side effects (which as a combo weren't so great). I think my stubbornness was an asset, and may be at least part of why I'm still kicking around- I just refuse to die. Sounds like maybe you're a little similar?
Best of luck to you
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- August 3, 2014 at 11:59 am
So happy to hear you're doing well! Happy "anniversary"! This disease certainly does change your perspective a bit. I failed Ipi last summer while I was teaching a summer college course. I was marveling this year as the same course was going on again how I managed to teach that course last year with both WBR and Ipi side effects (which as a combo weren't so great). I think my stubbornness was an asset, and may be at least part of why I'm still kicking around- I just refuse to die. Sounds like maybe you're a little similar?
Best of luck to you
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- August 3, 2014 at 6:21 pm
Mat – Thank you for your post. You are an encouragement to me and, I'm sure, many more of us dealing with Melanoma.
As for me, I've been dealing with skin cancer for more than 12 years. I had over 15 "surgically" removed, dozens of biopsies, and hundreds burned. All of those were supposedly Basal or Squamous Cell. In January I felt a small lump just in front of my ear, nothing on the surface, to me it felt like an inflamed lymph node. Bottom line, March 19th I heard "Metastatic Melanoma" used to describe my condition. No primary tumor was found. The surgeon and Melanoma Specialist both said that my primary was probably one of three prior surgeries and was misdiagnosed (those were above the sentinel lymph node where we discovered it).
Fortunately, my PET CT and brain scans were clear. In April I had surgery to remove my Parotid Gland, along with a Radical Neck Dissection for Lymph node removal. I've recently started a Drug Study and was randomized to Yervoy and recently received my first infusion.
I too have learned what I call my "new normal" which includes the medical aspects and an appreciation of life and people. I too am grateful for simple things, time with family and friends, a fishing trip with my son. The support of family, friends, and our church.
Congratulations!
Dave
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- August 3, 2014 at 6:21 pm
Mat – Thank you for your post. You are an encouragement to me and, I'm sure, many more of us dealing with Melanoma.
As for me, I've been dealing with skin cancer for more than 12 years. I had over 15 "surgically" removed, dozens of biopsies, and hundreds burned. All of those were supposedly Basal or Squamous Cell. In January I felt a small lump just in front of my ear, nothing on the surface, to me it felt like an inflamed lymph node. Bottom line, March 19th I heard "Metastatic Melanoma" used to describe my condition. No primary tumor was found. The surgeon and Melanoma Specialist both said that my primary was probably one of three prior surgeries and was misdiagnosed (those were above the sentinel lymph node where we discovered it).
Fortunately, my PET CT and brain scans were clear. In April I had surgery to remove my Parotid Gland, along with a Radical Neck Dissection for Lymph node removal. I've recently started a Drug Study and was randomized to Yervoy and recently received my first infusion.
I too have learned what I call my "new normal" which includes the medical aspects and an appreciation of life and people. I too am grateful for simple things, time with family and friends, a fishing trip with my son. The support of family, friends, and our church.
Congratulations!
Dave
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- August 3, 2014 at 6:21 pm
Mat – Thank you for your post. You are an encouragement to me and, I'm sure, many more of us dealing with Melanoma.
As for me, I've been dealing with skin cancer for more than 12 years. I had over 15 "surgically" removed, dozens of biopsies, and hundreds burned. All of those were supposedly Basal or Squamous Cell. In January I felt a small lump just in front of my ear, nothing on the surface, to me it felt like an inflamed lymph node. Bottom line, March 19th I heard "Metastatic Melanoma" used to describe my condition. No primary tumor was found. The surgeon and Melanoma Specialist both said that my primary was probably one of three prior surgeries and was misdiagnosed (those were above the sentinel lymph node where we discovered it).
Fortunately, my PET CT and brain scans were clear. In April I had surgery to remove my Parotid Gland, along with a Radical Neck Dissection for Lymph node removal. I've recently started a Drug Study and was randomized to Yervoy and recently received my first infusion.
I too have learned what I call my "new normal" which includes the medical aspects and an appreciation of life and people. I too am grateful for simple things, time with family and friends, a fishing trip with my son. The support of family, friends, and our church.
Congratulations!
Dave
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- August 5, 2014 at 5:07 pm
So happy for you Mat! Keep beating the beast and living your life to the fullest!
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- August 5, 2014 at 5:07 pm
So happy for you Mat! Keep beating the beast and living your life to the fullest!
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- August 5, 2014 at 5:07 pm
So happy for you Mat! Keep beating the beast and living your life to the fullest!
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- August 7, 2014 at 5:00 pm
Mat, thanks for sharing this milestone with us. I hadn't seen your post from last summer until reading it as part of this thread, and it was good to read and connect back to the beginning of your journey — as always, well written, thought-provoking, and encouraging for others. We've interacted a few times recently on the forum and have commented on the similarities we've experienced, same major city, close in age (my kids are a little older – that's another story, but the feelings we have as parents with cancer are the same), circumstances at diagnosis, and even the doctors, facilities, and treatment options we've considered have crossed paths at several points, although a couple of years apart.Among many of the things you wrote, regret about not acting on things sooner, guilt about impact to my family more than anything else, and more long, emotional drives to/from Bethesda than I can count are all firmly entrenched in the memories of the early part of my own journey, so your post again strikes a cord with me.I'm also reminded how different each of our paths can be through the minefield of treatment for advanced stage melanoma. For anyone reading here and perhaps facing a new Stage IV diagnosis, be encouraged by Mat's and other stories here that there are multiple paths through this. While the new therapies are rapidly changing the landscape, there isn't a single recipe for success. My own doctors and I have often discussed how we tossed out the rule book for me a long time ago, and I know that a number of other posters here have probably had a similar discussion. Educate yourself, find doctors you trust, take advantage of the collective knowledge here, make a plan… and be prepared for that plan to change. It's O.K. to have a plan B in mind; frankly, we should all be thinking about plan B and C — try not to obsess about it, but know what options are out there. We have options that weren't available only a few short years ago.And again Mat, thanks for sharing and congratulations. Wishing you continued success and hope for the future!Best,Joe -
- August 7, 2014 at 5:00 pm
Mat, thanks for sharing this milestone with us. I hadn't seen your post from last summer until reading it as part of this thread, and it was good to read and connect back to the beginning of your journey — as always, well written, thought-provoking, and encouraging for others. We've interacted a few times recently on the forum and have commented on the similarities we've experienced, same major city, close in age (my kids are a little older – that's another story, but the feelings we have as parents with cancer are the same), circumstances at diagnosis, and even the doctors, facilities, and treatment options we've considered have crossed paths at several points, although a couple of years apart.Among many of the things you wrote, regret about not acting on things sooner, guilt about impact to my family more than anything else, and more long, emotional drives to/from Bethesda than I can count are all firmly entrenched in the memories of the early part of my own journey, so your post again strikes a cord with me.I'm also reminded how different each of our paths can be through the minefield of treatment for advanced stage melanoma. For anyone reading here and perhaps facing a new Stage IV diagnosis, be encouraged by Mat's and other stories here that there are multiple paths through this. While the new therapies are rapidly changing the landscape, there isn't a single recipe for success. My own doctors and I have often discussed how we tossed out the rule book for me a long time ago, and I know that a number of other posters here have probably had a similar discussion. Educate yourself, find doctors you trust, take advantage of the collective knowledge here, make a plan… and be prepared for that plan to change. It's O.K. to have a plan B in mind; frankly, we should all be thinking about plan B and C — try not to obsess about it, but know what options are out there. We have options that weren't available only a few short years ago.And again Mat, thanks for sharing and congratulations. Wishing you continued success and hope for the future!Best,Joe -
- August 7, 2014 at 5:00 pm
Mat, thanks for sharing this milestone with us. I hadn't seen your post from last summer until reading it as part of this thread, and it was good to read and connect back to the beginning of your journey — as always, well written, thought-provoking, and encouraging for others. We've interacted a few times recently on the forum and have commented on the similarities we've experienced, same major city, close in age (my kids are a little older – that's another story, but the feelings we have as parents with cancer are the same), circumstances at diagnosis, and even the doctors, facilities, and treatment options we've considered have crossed paths at several points, although a couple of years apart.Among many of the things you wrote, regret about not acting on things sooner, guilt about impact to my family more than anything else, and more long, emotional drives to/from Bethesda than I can count are all firmly entrenched in the memories of the early part of my own journey, so your post again strikes a cord with me.I'm also reminded how different each of our paths can be through the minefield of treatment for advanced stage melanoma. For anyone reading here and perhaps facing a new Stage IV diagnosis, be encouraged by Mat's and other stories here that there are multiple paths through this. While the new therapies are rapidly changing the landscape, there isn't a single recipe for success. My own doctors and I have often discussed how we tossed out the rule book for me a long time ago, and I know that a number of other posters here have probably had a similar discussion. Educate yourself, find doctors you trust, take advantage of the collective knowledge here, make a plan… and be prepared for that plan to change. It's O.K. to have a plan B in mind; frankly, we should all be thinking about plan B and C — try not to obsess about it, but know what options are out there. We have options that weren't available only a few short years ago.And again Mat, thanks for sharing and congratulations. Wishing you continued success and hope for the future!Best,Joe-
- August 8, 2014 at 5:35 am
your story sounds like what we just went through with my 22 year old daughter. just left bethesda tues after failed TIL trial. told nothing left. she is going back to our cancer center hopefully to start the combo. gives me hope that we have more than a couple months left. thank you
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- August 8, 2014 at 5:35 am
your story sounds like what we just went through with my 22 year old daughter. just left bethesda tues after failed TIL trial. told nothing left. she is going back to our cancer center hopefully to start the combo. gives me hope that we have more than a couple months left. thank you
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- August 8, 2014 at 5:35 am
your story sounds like what we just went through with my 22 year old daughter. just left bethesda tues after failed TIL trial. told nothing left. she is going back to our cancer center hopefully to start the combo. gives me hope that we have more than a couple months left. thank you
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- August 8, 2014 at 10:10 am
Mindy, I'm sorry to hear about your daughter's situation. For what it's worth, my impression of the doctors at the NIH (and elsewhere) is that they are very focused on what they do (TIL) and much less focused on what others are doing. As you may already be doing, be sure to visit with more than one melanoma specialist. If you're on the East Coast, there are so many excellent options (not suggesting that there aren't good options elsewhere).
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- August 8, 2014 at 10:10 am
Mindy, I'm sorry to hear about your daughter's situation. For what it's worth, my impression of the doctors at the NIH (and elsewhere) is that they are very focused on what they do (TIL) and much less focused on what others are doing. As you may already be doing, be sure to visit with more than one melanoma specialist. If you're on the East Coast, there are so many excellent options (not suggesting that there aren't good options elsewhere).
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- August 8, 2014 at 10:10 am
Mindy, I'm sorry to hear about your daughter's situation. For what it's worth, my impression of the doctors at the NIH (and elsewhere) is that they are very focused on what they do (TIL) and much less focused on what others are doing. As you may already be doing, be sure to visit with more than one melanoma specialist. If you're on the East Coast, there are so many excellent options (not suggesting that there aren't good options elsewhere).
Tagged: cutaneous melanoma
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