› Forums › General Melanoma Community › Update!
- This topic has 18 replies, 5 voices, and was last updated 10 years, 5 months ago by sofistef.
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- November 12, 2013 at 11:25 pm
Hello,
We had the appointemnt with Dr Atkins this afternoon. He thinks systemic treatment is the best apporach right now as he fears the surgery will not be a solution because there is a hilar lymph node that is borderline and it might me affected. I have an order for adbominal and pelvis CT and and MRI that I hope will show nothing. Bloodwork was normal. My head is spinning and it's hard to find an epithet to describe the state of fear I experience right now! Unforunatelly the are no more seats on the ippi/ nivolumab I was hoping I can enroll and this upsets me ! I feel like stupid melanoma was ahead of me this time as well, I'm sorry I was not agresive enough to convince my doctor to remove the lung tumor while it was 5 mm , I accepted to wait 2 more months! I did the same thing 3 years ago when the derm told me not to worry about the mole, as it was nothing!!! I hate the odds I'm presented, but I know I must do whatever it takes be among the lucky ones to respond to whatever treatment as my kids need their mom! I hate this even more as I never ever in my life used a tanning bed or was a sun worshiper, but yet this happened to me!
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- November 13, 2013 at 12:46 am
I think all Stage IV patients have been where you are mentally and emotionally (I know I have). As you're already doing, you push through the fear, anxiety, uncertainty, anger, frustration, etc., focus on your kids and move forward. You get your gameplan in place and then do your best to get back to a normal routine in the "new normal" of your life. You continue to do your research so you know what your options are for plan B, and you keep moving forward.
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- November 13, 2013 at 12:46 am
I think all Stage IV patients have been where you are mentally and emotionally (I know I have). As you're already doing, you push through the fear, anxiety, uncertainty, anger, frustration, etc., focus on your kids and move forward. You get your gameplan in place and then do your best to get back to a normal routine in the "new normal" of your life. You continue to do your research so you know what your options are for plan B, and you keep moving forward.
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- November 13, 2013 at 12:46 am
I think all Stage IV patients have been where you are mentally and emotionally (I know I have). As you're already doing, you push through the fear, anxiety, uncertainty, anger, frustration, etc., focus on your kids and move forward. You get your gameplan in place and then do your best to get back to a normal routine in the "new normal" of your life. You continue to do your research so you know what your options are for plan B, and you keep moving forward.
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- November 13, 2013 at 1:06 am
I understand the shock you must be going through right now. Your anxiety and desperation are perfectly normal. But really, melanoma is not the death sentence it was even 2 or 3 years ago. Several effective new treatments have been introduced in the last few years and several more are in the pipeline. True, we don't yet have anything that works 100% of the time in 100% of the patients. But many, many people are getting long-term remission– even seeming "cures"– from one or another of the new drugs and there is a very good chance that you will be one of them.
You are going through one of the most emotionally difficult phases of the disease right now. You're newly diagnosed, you don't yet know the full extent of your disease, you have no solid direction to go in, and you're probably reading lots of scary (and out-of-date) statistics. Once all the testing is done and you and your doctor have developed a solid plan of action, you will feel much more optimistic and in control. So try to be patient and stay positive. Things will get better.
And please don't start with the "wouldda, shoulda, coulda" stuff. You handled your melanoma exactly right. You took the right steps at the right time. If you had had a biopsy sooner or if you had had lung surgery earlier there is absolutely no guarantee that the outcome would have been any different. Melanoma is a very tricky disease and nobody can predict what will happen with any given patient. All you can do– all any of us can do– is to make the best decision you can with the information you have at the time and then never look back. You and your husband will probably have to make many difficult and confusing decisions in the months and years to come. Do your research, ask all the questions you can think of, and then take the plunge. Make a choice. Then pray for the best and resist the temptation to second-guess yourself if things don't work out quite right. None of us has a crystal ball.
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- November 13, 2013 at 1:06 am
I understand the shock you must be going through right now. Your anxiety and desperation are perfectly normal. But really, melanoma is not the death sentence it was even 2 or 3 years ago. Several effective new treatments have been introduced in the last few years and several more are in the pipeline. True, we don't yet have anything that works 100% of the time in 100% of the patients. But many, many people are getting long-term remission– even seeming "cures"– from one or another of the new drugs and there is a very good chance that you will be one of them.
You are going through one of the most emotionally difficult phases of the disease right now. You're newly diagnosed, you don't yet know the full extent of your disease, you have no solid direction to go in, and you're probably reading lots of scary (and out-of-date) statistics. Once all the testing is done and you and your doctor have developed a solid plan of action, you will feel much more optimistic and in control. So try to be patient and stay positive. Things will get better.
And please don't start with the "wouldda, shoulda, coulda" stuff. You handled your melanoma exactly right. You took the right steps at the right time. If you had had a biopsy sooner or if you had had lung surgery earlier there is absolutely no guarantee that the outcome would have been any different. Melanoma is a very tricky disease and nobody can predict what will happen with any given patient. All you can do– all any of us can do– is to make the best decision you can with the information you have at the time and then never look back. You and your husband will probably have to make many difficult and confusing decisions in the months and years to come. Do your research, ask all the questions you can think of, and then take the plunge. Make a choice. Then pray for the best and resist the temptation to second-guess yourself if things don't work out quite right. None of us has a crystal ball.
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- November 13, 2013 at 1:06 am
I understand the shock you must be going through right now. Your anxiety and desperation are perfectly normal. But really, melanoma is not the death sentence it was even 2 or 3 years ago. Several effective new treatments have been introduced in the last few years and several more are in the pipeline. True, we don't yet have anything that works 100% of the time in 100% of the patients. But many, many people are getting long-term remission– even seeming "cures"– from one or another of the new drugs and there is a very good chance that you will be one of them.
You are going through one of the most emotionally difficult phases of the disease right now. You're newly diagnosed, you don't yet know the full extent of your disease, you have no solid direction to go in, and you're probably reading lots of scary (and out-of-date) statistics. Once all the testing is done and you and your doctor have developed a solid plan of action, you will feel much more optimistic and in control. So try to be patient and stay positive. Things will get better.
And please don't start with the "wouldda, shoulda, coulda" stuff. You handled your melanoma exactly right. You took the right steps at the right time. If you had had a biopsy sooner or if you had had lung surgery earlier there is absolutely no guarantee that the outcome would have been any different. Melanoma is a very tricky disease and nobody can predict what will happen with any given patient. All you can do– all any of us can do– is to make the best decision you can with the information you have at the time and then never look back. You and your husband will probably have to make many difficult and confusing decisions in the months and years to come. Do your research, ask all the questions you can think of, and then take the plunge. Make a choice. Then pray for the best and resist the temptation to second-guess yourself if things don't work out quite right. None of us has a crystal ball.
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- November 13, 2013 at 12:47 pm
Thank you so much for sharing your story. I am so sorry it has progressed. That gut instinct does prove itself time and time again. Your story inspires many of us to pursue more aggressive treatment. I will be following your post and wish you the best of luck through this next step!
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- November 13, 2013 at 6:50 pm
I know exactly how you feel Your head is spinning thinking about what to do..The previous poster is correct. melanoma treatment has come a long way in just a few years. I am currently on a anti-pd1 trial at MD Anderson and my scans have shown great results. you may want to look into something like that. there are several trials out there.Best of luck. Happy to answer any questions you may have.
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- November 13, 2013 at 6:50 pm
I know exactly how you feel Your head is spinning thinking about what to do..The previous poster is correct. melanoma treatment has come a long way in just a few years. I am currently on a anti-pd1 trial at MD Anderson and my scans have shown great results. you may want to look into something like that. there are several trials out there.Best of luck. Happy to answer any questions you may have.
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- November 13, 2013 at 6:50 pm
I know exactly how you feel Your head is spinning thinking about what to do..The previous poster is correct. melanoma treatment has come a long way in just a few years. I am currently on a anti-pd1 trial at MD Anderson and my scans have shown great results. you may want to look into something like that. there are several trials out there.Best of luck. Happy to answer any questions you may have.
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- November 13, 2013 at 6:50 pm
I know exactly how you feel Your head is spinning thinking about what to do..The previous poster is correct. melanoma treatment has come a long way in just a few years. I am currently on a anti-pd1 trial at MD Anderson and my scans have shown great results. you may want to look into something like that. there are several trials out there.Best of luck. Happy to answer any questions you may have.
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- November 13, 2013 at 6:50 pm
I know exactly how you feel Your head is spinning thinking about what to do..The previous poster is correct. melanoma treatment has come a long way in just a few years. I am currently on a anti-pd1 trial at MD Anderson and my scans have shown great results. you may want to look into something like that. there are several trials out there.Best of luck. Happy to answer any questions you may have.
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- November 13, 2013 at 10:05 pm
HI Becky,
I followed your story for quite some time as you were 3A with no really deep primary and micromet in sentinel and you give me hope that this battle can be won! I really want to get in this trial, I hope the MRI and CT will not show anything , it was clean two months ago. I really wanted to get into ipp/ nivo trial but there are no more spots on the phase 1 unfortunately. ๐ I can enroll in phase 3 and I hope I will be lucky to get the combo. Probably next week will have all the results back to have a clear picture and I real plan on how to approach this. What is the trial you are on?
Thank you so much for your reply
Dana
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- November 13, 2013 at 10:05 pm
HI Becky,
I followed your story for quite some time as you were 3A with no really deep primary and micromet in sentinel and you give me hope that this battle can be won! I really want to get in this trial, I hope the MRI and CT will not show anything , it was clean two months ago. I really wanted to get into ipp/ nivo trial but there are no more spots on the phase 1 unfortunately. ๐ I can enroll in phase 3 and I hope I will be lucky to get the combo. Probably next week will have all the results back to have a clear picture and I real plan on how to approach this. What is the trial you are on?
Thank you so much for your reply
Dana
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- November 13, 2013 at 10:05 pm
HI Becky,
I followed your story for quite some time as you were 3A with no really deep primary and micromet in sentinel and you give me hope that this battle can be won! I really want to get in this trial, I hope the MRI and CT will not show anything , it was clean two months ago. I really wanted to get into ipp/ nivo trial but there are no more spots on the phase 1 unfortunately. ๐ I can enroll in phase 3 and I hope I will be lucky to get the combo. Probably next week will have all the results back to have a clear picture and I real plan on how to approach this. What is the trial you are on?
Thank you so much for your reply
Dana
-
- November 13, 2013 at 6:50 pm
I know exactly how you feel Your head is spinning thinking about what to do..The previous poster is correct. melanoma treatment has come a long way in just a few years. I am currently on a anti-pd1 trial at MD Anderson and my scans have shown great results. you may want to look into something like that. there are several trials out there.Best of luck. Happy to answer any questions you may have.
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- November 13, 2013 at 12:47 pm
Thank you so much for sharing your story. I am so sorry it has progressed. That gut instinct does prove itself time and time again. Your story inspires many of us to pursue more aggressive treatment. I will be following your post and wish you the best of luck through this next step!
-
- November 13, 2013 at 12:47 pm
Thank you so much for sharing your story. I am so sorry it has progressed. That gut instinct does prove itself time and time again. Your story inspires many of us to pursue more aggressive treatment. I will be following your post and wish you the best of luck through this next step!
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Tagged: cutaneous melanoma
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