› Forums › General Melanoma Community › spine, lungs, liver and belly
- This topic has 27 replies, 5 voices, and was last updated 8 years, 6 months ago by
Swanee.
- Post
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- October 25, 2015 at 4:46 pm
Dear Fellow Warriors,
I have been battling this disease for the past six years, Originally diagnosed at Stage IIIB. Did a year of interferon, radiation, leukine, and yervoy. Last week's scans showed mets to spine, lungs, liver, and belly. I used to come here daily to stay on top of treatments and be inspired by the warriors battling this disease. Whenever I could, I gave some advice on treatments I had, but I really didn't have the experiece to chime in often. Unfortunately, I have been out of touch for the past few years taking care of my aging parents. Now, I'm just at a loss with my latest scans. I would greatly appreciate any input you can offer.
I am a teacher, so I'm not sure what to do about school. Do you think I should resign immediately? I don't want to die during the year on my students.
I just had my first dose of Keytruda. I'm wondering if anyone knows if this drug works on the kinds of mets I have. Also, I have increasing pain in my back where the bone mets were seen. Any ideas for pain management. Does it intensify quickly? At first, I just thought I pulled a muscle.
Thanks for any help you can offer.
God bless all of you for the battle you fight or help others fight daily!
Tricia
- Replies
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- October 25, 2015 at 7:24 pm
Keytruda can work for the type of mets you have and with minimal side effects. Don't make any drastic life changes (e.g., going on disability) quickly. Take it one day at a time, think things through, etc. Keytruda can be a miracle drug for some. Hopefully, you.
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- October 25, 2015 at 7:24 pm
Keytruda can work for the type of mets you have and with minimal side effects. Don't make any drastic life changes (e.g., going on disability) quickly. Take it one day at a time, think things through, etc. Keytruda can be a miracle drug for some. Hopefully, you.
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- October 25, 2015 at 7:24 pm
Keytruda can work for the type of mets you have and with minimal side effects. Don't make any drastic life changes (e.g., going on disability) quickly. Take it one day at a time, think things through, etc. Keytruda can be a miracle drug for some. Hopefully, you.
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- October 26, 2015 at 12:38 am
Wow. I was on keytruda a year. I wouldn't still be here without it. Unfortunately some stuff continued to grow and some new stuff showed up. Despite radiation too. Had zelboraf, yervoy and taf Mek before that. Just stopped opdivo and now on keytruda plus abraxane.
After I think 4 doses you should get your scan and if everything is shrinking you will know it is the miracle med for you. It has been for others. I wouldn't make any long term decisions until then as long as you feel ok. I would try to keep working but take better care of yourself. Don't let yourself get wore out. Walk a lot practicing deep breathing as you do to get that oxygen into the lungs where those mets are. Eat good.
Also you should get a head MRI if you haven't already.
I have a tumor in almost every part of my spine. One thing that helped a lot was walking. Do the proper posture they can show you how to get up and down and stand and walk. Also the heating pad really helped numb the back pain making it bearable. You might also want to ask about zometa or xgeva. They are bone strengthening stuff. I had a bad reaction to first dose of zometa but have been on xgeva over a year.
To have gone through the meds you went through before you are obviously a strong warrior. Others have got to ned with mets like yours. Maybe with the right luck you can too.
Artie
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- October 26, 2015 at 12:38 am
Wow. I was on keytruda a year. I wouldn't still be here without it. Unfortunately some stuff continued to grow and some new stuff showed up. Despite radiation too. Had zelboraf, yervoy and taf Mek before that. Just stopped opdivo and now on keytruda plus abraxane.
After I think 4 doses you should get your scan and if everything is shrinking you will know it is the miracle med for you. It has been for others. I wouldn't make any long term decisions until then as long as you feel ok. I would try to keep working but take better care of yourself. Don't let yourself get wore out. Walk a lot practicing deep breathing as you do to get that oxygen into the lungs where those mets are. Eat good.
Also you should get a head MRI if you haven't already.
I have a tumor in almost every part of my spine. One thing that helped a lot was walking. Do the proper posture they can show you how to get up and down and stand and walk. Also the heating pad really helped numb the back pain making it bearable. You might also want to ask about zometa or xgeva. They are bone strengthening stuff. I had a bad reaction to first dose of zometa but have been on xgeva over a year.
To have gone through the meds you went through before you are obviously a strong warrior. Others have got to ned with mets like yours. Maybe with the right luck you can too.
Artie
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- October 26, 2015 at 12:38 am
Wow. I was on keytruda a year. I wouldn't still be here without it. Unfortunately some stuff continued to grow and some new stuff showed up. Despite radiation too. Had zelboraf, yervoy and taf Mek before that. Just stopped opdivo and now on keytruda plus abraxane.
After I think 4 doses you should get your scan and if everything is shrinking you will know it is the miracle med for you. It has been for others. I wouldn't make any long term decisions until then as long as you feel ok. I would try to keep working but take better care of yourself. Don't let yourself get wore out. Walk a lot practicing deep breathing as you do to get that oxygen into the lungs where those mets are. Eat good.
Also you should get a head MRI if you haven't already.
I have a tumor in almost every part of my spine. One thing that helped a lot was walking. Do the proper posture they can show you how to get up and down and stand and walk. Also the heating pad really helped numb the back pain making it bearable. You might also want to ask about zometa or xgeva. They are bone strengthening stuff. I had a bad reaction to first dose of zometa but have been on xgeva over a year.
To have gone through the meds you went through before you are obviously a strong warrior. Others have got to ned with mets like yours. Maybe with the right luck you can too.
Artie
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- October 26, 2015 at 9:57 pm
Artie,
Thanks so much for your advice and encouragement. You have been through so much. I hope the Keytruda and abraxane is the one for you. You will definitely be in my prayers.
Interestingly, I've done my share of treatments, but my melanoma was always surgically removed. I never had the leftover tumors, so I never could really give that much advice. I did the treatments because my melanoma had such a high risk of recurring.
I love the idea that deep breathing will help with the lung mets. This year, I was chosen as one of the ten teachers in the district to pilot a yoga/mindfulness program in the classroom. It's all about different methods of breathing to help bring a desired state of mind – calm, energized, focused, etc. I'm so happy to hear that doing this all day with my students (little cherubs!) will help me with this battle. Tomorrow, we'll be doing it even more…thanks for the tip!
What I find most amusing, is that I am laden with allergies: chocolate (yes chocolate!), nuts, fish, penicilin, levaquin, strawberries, latex, flowers, honey, mangoes…just to name a few. Ironically, I have tolerated these harsh medications rather well. Interferon, a full year, without missing a day of school. The same with the other treatments. How is it that a chocolate sprinkle can send me into anaphylactic shock but interferon was not that bad? My doctor used to joke that I had a steel interior to make it through. I told him the real reason was that I wanted a second balloon. You see, after my month of high-dose daily at the hospital, they gave me a "You Made It" balloon and the whole staff signed it. I knew they would give me another if I could just get through the 11 months of low-dose. Obviously, it doesn't take much to motivate me. LOL!
Again, my sincerest thanks and well-wishes for your help and guidance. Many blessings!
Tricia
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- October 26, 2015 at 9:57 pm
Artie,
Thanks so much for your advice and encouragement. You have been through so much. I hope the Keytruda and abraxane is the one for you. You will definitely be in my prayers.
Interestingly, I've done my share of treatments, but my melanoma was always surgically removed. I never had the leftover tumors, so I never could really give that much advice. I did the treatments because my melanoma had such a high risk of recurring.
I love the idea that deep breathing will help with the lung mets. This year, I was chosen as one of the ten teachers in the district to pilot a yoga/mindfulness program in the classroom. It's all about different methods of breathing to help bring a desired state of mind – calm, energized, focused, etc. I'm so happy to hear that doing this all day with my students (little cherubs!) will help me with this battle. Tomorrow, we'll be doing it even more…thanks for the tip!
What I find most amusing, is that I am laden with allergies: chocolate (yes chocolate!), nuts, fish, penicilin, levaquin, strawberries, latex, flowers, honey, mangoes…just to name a few. Ironically, I have tolerated these harsh medications rather well. Interferon, a full year, without missing a day of school. The same with the other treatments. How is it that a chocolate sprinkle can send me into anaphylactic shock but interferon was not that bad? My doctor used to joke that I had a steel interior to make it through. I told him the real reason was that I wanted a second balloon. You see, after my month of high-dose daily at the hospital, they gave me a "You Made It" balloon and the whole staff signed it. I knew they would give me another if I could just get through the 11 months of low-dose. Obviously, it doesn't take much to motivate me. LOL!
Again, my sincerest thanks and well-wishes for your help and guidance. Many blessings!
Tricia
-
- October 26, 2015 at 9:57 pm
Artie,
Thanks so much for your advice and encouragement. You have been through so much. I hope the Keytruda and abraxane is the one for you. You will definitely be in my prayers.
Interestingly, I've done my share of treatments, but my melanoma was always surgically removed. I never had the leftover tumors, so I never could really give that much advice. I did the treatments because my melanoma had such a high risk of recurring.
I love the idea that deep breathing will help with the lung mets. This year, I was chosen as one of the ten teachers in the district to pilot a yoga/mindfulness program in the classroom. It's all about different methods of breathing to help bring a desired state of mind – calm, energized, focused, etc. I'm so happy to hear that doing this all day with my students (little cherubs!) will help me with this battle. Tomorrow, we'll be doing it even more…thanks for the tip!
What I find most amusing, is that I am laden with allergies: chocolate (yes chocolate!), nuts, fish, penicilin, levaquin, strawberries, latex, flowers, honey, mangoes…just to name a few. Ironically, I have tolerated these harsh medications rather well. Interferon, a full year, without missing a day of school. The same with the other treatments. How is it that a chocolate sprinkle can send me into anaphylactic shock but interferon was not that bad? My doctor used to joke that I had a steel interior to make it through. I told him the real reason was that I wanted a second balloon. You see, after my month of high-dose daily at the hospital, they gave me a "You Made It" balloon and the whole staff signed it. I knew they would give me another if I could just get through the 11 months of low-dose. Obviously, it doesn't take much to motivate me. LOL!
Again, my sincerest thanks and well-wishes for your help and guidance. Many blessings!
Tricia
-
- October 26, 2015 at 9:04 pm
Hi Tricia! Sorry to read this post, I remember when I first found this website and you were here often, you too, being recently diagnosed. I too, have stayed connected, if only to read posts from others and know there journey here. There are many new and improved treatments now and I believe you will find one that works for you. As far as your job, I would recommend you keep your job and keep your life as busy and normal as you possibly can, sometimes the normalcy and business of what we do keeps our minds from working overtime dragging us downward. Unless of course, you are to stressed and you don't enjoy the work you are doing. Otherwise, I would find your kids to be very supportive and may provide you with the optimism, humor and support everyone needs in this journey and a classroom of kids have a way of cheering you that is hard to duplicate from family and friends! Taking care of aging parents can be a very stressful and energy draining job which possibly contributed to your recurrence. I'm going through this challenge now and worry that it could affect my immune system, so I am working hard to minimize the stress on myself! Sending positive thoughts your way and clarity with the information you receive and decisions you must make in the coming days. Remember to take big deep breaths and tell yourself you will beat this and believe in the power of healing.
Swanee
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- October 26, 2015 at 9:04 pm
Hi Tricia! Sorry to read this post, I remember when I first found this website and you were here often, you too, being recently diagnosed. I too, have stayed connected, if only to read posts from others and know there journey here. There are many new and improved treatments now and I believe you will find one that works for you. As far as your job, I would recommend you keep your job and keep your life as busy and normal as you possibly can, sometimes the normalcy and business of what we do keeps our minds from working overtime dragging us downward. Unless of course, you are to stressed and you don't enjoy the work you are doing. Otherwise, I would find your kids to be very supportive and may provide you with the optimism, humor and support everyone needs in this journey and a classroom of kids have a way of cheering you that is hard to duplicate from family and friends! Taking care of aging parents can be a very stressful and energy draining job which possibly contributed to your recurrence. I'm going through this challenge now and worry that it could affect my immune system, so I am working hard to minimize the stress on myself! Sending positive thoughts your way and clarity with the information you receive and decisions you must make in the coming days. Remember to take big deep breaths and tell yourself you will beat this and believe in the power of healing.
Swanee
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- October 26, 2015 at 10:33 pm
Swanee,
So good to hear from someone from the "old days." I remember you, too! So many new people to "meet" here. So many new stories to hear about. Most importantly, so many new people for whom to cheer. It's good to be back!
My students are the lights of my life and I take the steps two by two to get to them each day. With them, I can move mountains. I am so lucky to have a job that gives me such joy and happiness. Each day, I get twenty-two little hugs on the way in, twenty-two little hugs on the way out, and a bunch of others in between! They definitely keep me focused and positive.
Good luck to you with taking care of your parents. It is definitely challenging because over time, the roles change. You become the parent; they become the child. Just keep all of the memories you have at the top of your heart. Remember each scrape they patched up; each skill they taught you; each gray hair you gave them; each word of wisdom they bestowed on you. When all else fails, keep your sense of humor up and remember each time-out they gave you and think…can I actually give them a time-out now? Just kidding!!!!! Stay positive and make sure you take time to take care of yourself, too! Caretakers forget that one all too often. Try some yoga or mediation. It does a body (and mind) good!
I lost my Mom in March, so now I just have my Dad. He has alzheimer's, so it can be bittersweet. I cherish every moment I have because I never know when the "light" will finally go off forever. Whenever I get sad, I just hear those words…"God has a plan for all of us." And then, I just follow my heart.
Thanks so much for your encouragement. I wish you all the best with your parents. You are in my prayers. God bless!
Tricia
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- October 26, 2015 at 10:33 pm
Swanee,
So good to hear from someone from the "old days." I remember you, too! So many new people to "meet" here. So many new stories to hear about. Most importantly, so many new people for whom to cheer. It's good to be back!
My students are the lights of my life and I take the steps two by two to get to them each day. With them, I can move mountains. I am so lucky to have a job that gives me such joy and happiness. Each day, I get twenty-two little hugs on the way in, twenty-two little hugs on the way out, and a bunch of others in between! They definitely keep me focused and positive.
Good luck to you with taking care of your parents. It is definitely challenging because over time, the roles change. You become the parent; they become the child. Just keep all of the memories you have at the top of your heart. Remember each scrape they patched up; each skill they taught you; each gray hair you gave them; each word of wisdom they bestowed on you. When all else fails, keep your sense of humor up and remember each time-out they gave you and think…can I actually give them a time-out now? Just kidding!!!!! Stay positive and make sure you take time to take care of yourself, too! Caretakers forget that one all too often. Try some yoga or mediation. It does a body (and mind) good!
I lost my Mom in March, so now I just have my Dad. He has alzheimer's, so it can be bittersweet. I cherish every moment I have because I never know when the "light" will finally go off forever. Whenever I get sad, I just hear those words…"God has a plan for all of us." And then, I just follow my heart.
Thanks so much for your encouragement. I wish you all the best with your parents. You are in my prayers. God bless!
Tricia
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- October 27, 2015 at 5:39 pm
You and I certainly have familiar stories! We've been lucky in that our tumors always seem to be in places they can surgically be removed. However, we are all to aware that they can pop up somewhere else and most likely will do so and now you are finding yourself in that situation. It's so frustrating watching and waiting but in the meantime they continue to make great strides in treatments, much better than when we were first diagnosed 5/6 years ago! I feel encouraged for you, me and everyone else battling today and hopefully soon, you will be ready for one of these treatments, kicking melanoma out of your life for good!
My daughter is a 3 grade teacher and she works very hard to teach and nurture her students, especially the unfortunate ones living with disfunctional families. But the love these kids have for her and the parents too, makes all her efforts worth it, she gets ten fold returned to her. I was hoping you too were in this rewarding teacher relationship because it will go a long way in your power to heal and beat this cancer.
I am currently all set to go in a TIL trial at SCCA, if and when the time arrives. However, I would prefer to try first Anti Pd-1, where if it's not going well or not tolerated, you can stop immediately!
Good luck with choosing your treatment options and so sorry you are back on this website but thinking positive thoughts for you that successful help is just around the corner! Wishing you many blessings of courage, strength, healing and clarity of mind to prepare you for the many questions and choices you will make, negotiating your way through this continued melanoma journey!
Take care,
Swanee
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- October 27, 2015 at 5:39 pm
You and I certainly have familiar stories! We've been lucky in that our tumors always seem to be in places they can surgically be removed. However, we are all to aware that they can pop up somewhere else and most likely will do so and now you are finding yourself in that situation. It's so frustrating watching and waiting but in the meantime they continue to make great strides in treatments, much better than when we were first diagnosed 5/6 years ago! I feel encouraged for you, me and everyone else battling today and hopefully soon, you will be ready for one of these treatments, kicking melanoma out of your life for good!
My daughter is a 3 grade teacher and she works very hard to teach and nurture her students, especially the unfortunate ones living with disfunctional families. But the love these kids have for her and the parents too, makes all her efforts worth it, she gets ten fold returned to her. I was hoping you too were in this rewarding teacher relationship because it will go a long way in your power to heal and beat this cancer.
I am currently all set to go in a TIL trial at SCCA, if and when the time arrives. However, I would prefer to try first Anti Pd-1, where if it's not going well or not tolerated, you can stop immediately!
Good luck with choosing your treatment options and so sorry you are back on this website but thinking positive thoughts for you that successful help is just around the corner! Wishing you many blessings of courage, strength, healing and clarity of mind to prepare you for the many questions and choices you will make, negotiating your way through this continued melanoma journey!
Take care,
Swanee
-
- October 27, 2015 at 5:39 pm
You and I certainly have familiar stories! We've been lucky in that our tumors always seem to be in places they can surgically be removed. However, we are all to aware that they can pop up somewhere else and most likely will do so and now you are finding yourself in that situation. It's so frustrating watching and waiting but in the meantime they continue to make great strides in treatments, much better than when we were first diagnosed 5/6 years ago! I feel encouraged for you, me and everyone else battling today and hopefully soon, you will be ready for one of these treatments, kicking melanoma out of your life for good!
My daughter is a 3 grade teacher and she works very hard to teach and nurture her students, especially the unfortunate ones living with disfunctional families. But the love these kids have for her and the parents too, makes all her efforts worth it, she gets ten fold returned to her. I was hoping you too were in this rewarding teacher relationship because it will go a long way in your power to heal and beat this cancer.
I am currently all set to go in a TIL trial at SCCA, if and when the time arrives. However, I would prefer to try first Anti Pd-1, where if it's not going well or not tolerated, you can stop immediately!
Good luck with choosing your treatment options and so sorry you are back on this website but thinking positive thoughts for you that successful help is just around the corner! Wishing you many blessings of courage, strength, healing and clarity of mind to prepare you for the many questions and choices you will make, negotiating your way through this continued melanoma journey!
Take care,
Swanee
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- October 26, 2015 at 10:33 pm
Swanee,
So good to hear from someone from the "old days." I remember you, too! So many new people to "meet" here. So many new stories to hear about. Most importantly, so many new people for whom to cheer. It's good to be back!
My students are the lights of my life and I take the steps two by two to get to them each day. With them, I can move mountains. I am so lucky to have a job that gives me such joy and happiness. Each day, I get twenty-two little hugs on the way in, twenty-two little hugs on the way out, and a bunch of others in between! They definitely keep me focused and positive.
Good luck to you with taking care of your parents. It is definitely challenging because over time, the roles change. You become the parent; they become the child. Just keep all of the memories you have at the top of your heart. Remember each scrape they patched up; each skill they taught you; each gray hair you gave them; each word of wisdom they bestowed on you. When all else fails, keep your sense of humor up and remember each time-out they gave you and think…can I actually give them a time-out now? Just kidding!!!!! Stay positive and make sure you take time to take care of yourself, too! Caretakers forget that one all too often. Try some yoga or mediation. It does a body (and mind) good!
I lost my Mom in March, so now I just have my Dad. He has alzheimer's, so it can be bittersweet. I cherish every moment I have because I never know when the "light" will finally go off forever. Whenever I get sad, I just hear those words…"God has a plan for all of us." And then, I just follow my heart.
Thanks so much for your encouragement. I wish you all the best with your parents. You are in my prayers. God bless!
Tricia
-
- October 26, 2015 at 9:04 pm
Hi Tricia! Sorry to read this post, I remember when I first found this website and you were here often, you too, being recently diagnosed. I too, have stayed connected, if only to read posts from others and know there journey here. There are many new and improved treatments now and I believe you will find one that works for you. As far as your job, I would recommend you keep your job and keep your life as busy and normal as you possibly can, sometimes the normalcy and business of what we do keeps our minds from working overtime dragging us downward. Unless of course, you are to stressed and you don't enjoy the work you are doing. Otherwise, I would find your kids to be very supportive and may provide you with the optimism, humor and support everyone needs in this journey and a classroom of kids have a way of cheering you that is hard to duplicate from family and friends! Taking care of aging parents can be a very stressful and energy draining job which possibly contributed to your recurrence. I'm going through this challenge now and worry that it could affect my immune system, so I am working hard to minimize the stress on myself! Sending positive thoughts your way and clarity with the information you receive and decisions you must make in the coming days. Remember to take big deep breaths and tell yourself you will beat this and believe in the power of healing.
Swanee
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