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- September 6, 2012 at 12:48 am
HI Everybody,
3 weeks ago after a workout at the fitness center, I noticed a 1.5 CM lump near my left nipple. Since then I've been through mammograms (not something most men get the chance to have :), ultra sounds, needle biopsy, PETscan, tumor removal, and SNB under my left arm. I have new respect and admiration for all of those ladies out there with breast cancer. When they gave me the 4 shots through the nipple for the SNB with no anesthetic, I about came off the table! OMG!!!
HI Everybody,
3 weeks ago after a workout at the fitness center, I noticed a 1.5 CM lump near my left nipple. Since then I've been through mammograms (not something most men get the chance to have :), ultra sounds, needle biopsy, PETscan, tumor removal, and SNB under my left arm. I have new respect and admiration for all of those ladies out there with breast cancer. When they gave me the 4 shots through the nipple for the SNB with no anesthetic, I about came off the table! OMG!!!
What a whirlwind! The diagnosis was advanced metastatic melanoma. To say the least, I'm scared and it's hard finding people to relate to. I'm happy I found this site.
All of my treatments have been at Baptist Hospital in Jacksonville, FL. They seem to be very competent, but I have a feeling I really need to be in the care of a hospital like Moffit in Tampa. Nothing against Baptist, but I really need to feel like I'm dealing with the best melanoma specialists possible on this journey. I have an appointment with Dr. Jeffrey Weber in a couple of days.
Tomorrow I get the results of my SNB and it's really scary. It seems like every step along the way has another surpise in the wings. It would be nice to have someone give me a heads up on what's to come. As an example, what do they do next if the SNB is negative? What do they do if the SNB is positive? Do I need to have more lymph nodes removed? Does an anti-angiogenic diet help melanoma patients? The surgeon tells me the tumor is out and I'm done, but I sincerely doubt that. I'm sure that I will need some kind of post surgical treatment. Immunotherapy?
Due to the fact that I had a skin melanoma 4 years ago (it hit me right between the eyes!), this is now classified as a stage IV according to the oncologist. He thinks I'm very lucky that the PETscan showed no other nodes and my bloodwork looks good.
I apologize for not having mastered the medical jargon, but I'm rapidly learning. The most important thing is that I can't let myself go to the dark place and be depressed or angry. I'm ready for battle. It would be nice hearing from some other warriors that have been through this for support.
Thanks,
Frank
- Replies
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- September 6, 2012 at 2:41 am
Good luck with your appointment with Dr Webber. It was posted tonight that he has 5 openings of Anti pd1 for those who are NED (sounds like you are). There are other requirements also. There are many local oncologists do not understand the latest melanoma drugs.
Let us know what your told!
Linda
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- September 6, 2012 at 2:41 am
Good luck with your appointment with Dr Webber. It was posted tonight that he has 5 openings of Anti pd1 for those who are NED (sounds like you are). There are other requirements also. There are many local oncologists do not understand the latest melanoma drugs.
Let us know what your told!
Linda
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- September 6, 2012 at 2:41 am
Good luck with your appointment with Dr Webber. It was posted tonight that he has 5 openings of Anti pd1 for those who are NED (sounds like you are). There are other requirements also. There are many local oncologists do not understand the latest melanoma drugs.
Let us know what your told!
Linda
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- September 7, 2012 at 1:41 am
Hi Frank. I pray that your SNB will have good results. There are many people on here that have such good advise to share and more that just offer support! This is a great place to be if you need to find understanding. We have all been there.,,In that scary place of a new diagnosis or a new recurrence. I wish you well. Keep us informed. Remember, this board is full of survivors! BethA 3/B
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- September 7, 2012 at 1:41 am
Hi Frank. I pray that your SNB will have good results. There are many people on here that have such good advise to share and more that just offer support! This is a great place to be if you need to find understanding. We have all been there.,,In that scary place of a new diagnosis or a new recurrence. I wish you well. Keep us informed. Remember, this board is full of survivors! BethA 3/B
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- September 7, 2012 at 1:41 am
Hi Frank. I pray that your SNB will have good results. There are many people on here that have such good advise to share and more that just offer support! This is a great place to be if you need to find understanding. We have all been there.,,In that scary place of a new diagnosis or a new recurrence. I wish you well. Keep us informed. Remember, this board is full of survivors! BethA 3/B
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- September 7, 2012 at 2:15 am
Thanks for the reply Beth! I got the SNB results today and it was negative, HOORAY! I'm meeting with Moffitt tomorrow and looking forward to their post op treatment recommendations. I'm sure that this isn't over and I will always be monitored and tested. A new reality.
What is your situation?
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- September 7, 2012 at 2:15 am
Thanks for the reply Beth! I got the SNB results today and it was negative, HOORAY! I'm meeting with Moffitt tomorrow and looking forward to their post op treatment recommendations. I'm sure that this isn't over and I will always be monitored and tested. A new reality.
What is your situation?
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- September 7, 2012 at 5:26 pm
I feel like one of the lucky ones. I had my first MM in 1993 at age 39. Mom of 3 small kids and scared to death. Had surgery and then just followups every 3/6/12 months for 10 years. Always NED. My surgeon released me and retired.
Within 6 mos, I had a reoccurrence near the original, but this one was deep within my upper arm. With the help of wonderful Doctors at UVA, I had more surgery, SNB, participated in a clinical trial, and have continued to be monitered since 2004 every 6 mos. We do blood work, skin checks, and chest x-rays. And I am NED!!!
The thought of MM never really leaves my mind. I have too many scars to forget. But I know worry doesn't fix anything, so I just keep enjoying my life. My kids are grown with little ones for me to enjoy. Life is good.
I'm glad your SNB came back good. Remain attentive to your health, stay close with your Dr, and live. Good luck. You will continue to be in my prayers. Beth 3/B
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- September 7, 2012 at 5:26 pm
I feel like one of the lucky ones. I had my first MM in 1993 at age 39. Mom of 3 small kids and scared to death. Had surgery and then just followups every 3/6/12 months for 10 years. Always NED. My surgeon released me and retired.
Within 6 mos, I had a reoccurrence near the original, but this one was deep within my upper arm. With the help of wonderful Doctors at UVA, I had more surgery, SNB, participated in a clinical trial, and have continued to be monitered since 2004 every 6 mos. We do blood work, skin checks, and chest x-rays. And I am NED!!!
The thought of MM never really leaves my mind. I have too many scars to forget. But I know worry doesn't fix anything, so I just keep enjoying my life. My kids are grown with little ones for me to enjoy. Life is good.
I'm glad your SNB came back good. Remain attentive to your health, stay close with your Dr, and live. Good luck. You will continue to be in my prayers. Beth 3/B
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- September 7, 2012 at 5:26 pm
I feel like one of the lucky ones. I had my first MM in 1993 at age 39. Mom of 3 small kids and scared to death. Had surgery and then just followups every 3/6/12 months for 10 years. Always NED. My surgeon released me and retired.
Within 6 mos, I had a reoccurrence near the original, but this one was deep within my upper arm. With the help of wonderful Doctors at UVA, I had more surgery, SNB, participated in a clinical trial, and have continued to be monitered since 2004 every 6 mos. We do blood work, skin checks, and chest x-rays. And I am NED!!!
The thought of MM never really leaves my mind. I have too many scars to forget. But I know worry doesn't fix anything, so I just keep enjoying my life. My kids are grown with little ones for me to enjoy. Life is good.
I'm glad your SNB came back good. Remain attentive to your health, stay close with your Dr, and live. Good luck. You will continue to be in my prayers. Beth 3/B
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- September 7, 2012 at 2:15 am
Thanks for the reply Beth! I got the SNB results today and it was negative, HOORAY! I'm meeting with Moffitt tomorrow and looking forward to their post op treatment recommendations. I'm sure that this isn't over and I will always be monitored and tested. A new reality.
What is your situation?
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- September 8, 2012 at 7:37 pm
Hi Frank. Greetings from Alachua. I'm a stage IV survivor in Weber's trial at Moffitt…not NED yet but the tumors are shrinking as of my last scans 2 weeks ago. I am now on the every-3-months follow-up schedule. What did Moffitt tell you?
Dan
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- September 9, 2012 at 8:25 pm
Hi Dan,
The last month seems like a bad nightmare, I'm ready to wake up and it's all gone! Actually, my meeting with Dr. Weber went very well. Even though I am NED, he told me that there is an 80% chance it will return within 12 months. He ordered a blood test for HLA-2. As I recall, he said that 70% of people out there have the right antigens (I'll cross my fingers). I told him that I would make the trip to Tampa every couple of weeks for anti-PD1 treatment. My biggest worry is that this is a double blind study, am I going to drive thousands of miles and spend many days of my life getting a placebo? I've been lucky up until now with early detection, single tumor, positive SNB, I guess I'll just have to keep rolling the dice. I'm wondering if I'd be better off getting yervoy versus taking the chance of a placebo. Confusing time.
Thanks for your reply, keep me posted on your progress OK? I'll say some prayers.
Frank
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- September 9, 2012 at 8:25 pm
Hi Dan,
The last month seems like a bad nightmare, I'm ready to wake up and it's all gone! Actually, my meeting with Dr. Weber went very well. Even though I am NED, he told me that there is an 80% chance it will return within 12 months. He ordered a blood test for HLA-2. As I recall, he said that 70% of people out there have the right antigens (I'll cross my fingers). I told him that I would make the trip to Tampa every couple of weeks for anti-PD1 treatment. My biggest worry is that this is a double blind study, am I going to drive thousands of miles and spend many days of my life getting a placebo? I've been lucky up until now with early detection, single tumor, positive SNB, I guess I'll just have to keep rolling the dice. I'm wondering if I'd be better off getting yervoy versus taking the chance of a placebo. Confusing time.
Thanks for your reply, keep me posted on your progress OK? I'll say some prayers.
Frank
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- September 9, 2012 at 8:25 pm
Hi Dan,
The last month seems like a bad nightmare, I'm ready to wake up and it's all gone! Actually, my meeting with Dr. Weber went very well. Even though I am NED, he told me that there is an 80% chance it will return within 12 months. He ordered a blood test for HLA-2. As I recall, he said that 70% of people out there have the right antigens (I'll cross my fingers). I told him that I would make the trip to Tampa every couple of weeks for anti-PD1 treatment. My biggest worry is that this is a double blind study, am I going to drive thousands of miles and spend many days of my life getting a placebo? I've been lucky up until now with early detection, single tumor, positive SNB, I guess I'll just have to keep rolling the dice. I'm wondering if I'd be better off getting yervoy versus taking the chance of a placebo. Confusing time.
Thanks for your reply, keep me posted on your progress OK? I'll say some prayers.
Frank
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Tagged: cutaneous melanoma
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