› Forums › General Melanoma Community › Stage 3B
- This topic has 18 replies, 6 voices, and was last updated 8 years, 6 months ago by
Mamapegela.
- Post
-
- November 20, 2016 at 11:17 pm
Ive been monitoring this forum for a few months. I guess it’s my time to share. I was diagnosed Stage 3B. My primary was .9 with a mitotic rate of 1 on my upper back. The surgeon told me the chance of my biopsy testing postive were low, but not zero. Unfortunately, I fell on the other side of the percentages with one positive node with a few micromets. After a difficult decision, I opted for the complete auxiliary lymph node dissection. I was aware of decog and other studies suggesting a watch and wait rather than the CLD. As others, this whole experience was a mental challenge. I didn’t think I could handle the stress of intense observation of the lymph node basin. I would always wonder, if I ever had a reoccurrence,if it was my failure to do the CLD that put me at a greater risk. The studies suggesting against the CLD were just not conclusive in the long term. I had to make the decision on what I knew at the time.I don’t have regrets. Its been 7 weeks. I have some nerve pain, but no lymphedema. I have full mobility and still go to the gym.
I opted against interfuron. The studies.I have read show it does very little for a year of flu like symptoms. The risk reward didn’t seem worth it.
I have an appointment with my surgeon to decide a future scan schedule. I’m hoping for the best. I’m a patient st Mass General Melanoma Clinic.
- Replies
-
-
- November 21, 2016 at 3:54 pm
I just wanted you to know I felt exactly like you 3 years ago. I was diagnosed 3b as well. I did the clnd… unfortunately I have Lymphadema in my right leg. Not fun but I still don't regret it one bit. I was able to get into a trial and did the full 1 1/2 years of Ipi. I have not recurred yet so that is a very good thing. I go to UNMC and I spoke with my onc about this again the other day and she is a firm about doing it.
-
- November 21, 2016 at 3:54 pm
I just wanted you to know I felt exactly like you 3 years ago. I was diagnosed 3b as well. I did the clnd… unfortunately I have Lymphadema in my right leg. Not fun but I still don't regret it one bit. I was able to get into a trial and did the full 1 1/2 years of Ipi. I have not recurred yet so that is a very good thing. I go to UNMC and I spoke with my onc about this again the other day and she is a firm about doing it.
-
- November 21, 2016 at 3:54 pm
I just wanted you to know I felt exactly like you 3 years ago. I was diagnosed 3b as well. I did the clnd… unfortunately I have Lymphadema in my right leg. Not fun but I still don't regret it one bit. I was able to get into a trial and did the full 1 1/2 years of Ipi. I have not recurred yet so that is a very good thing. I go to UNMC and I spoke with my onc about this again the other day and she is a firm about doing it.
-
- November 21, 2016 at 5:06 pm
I was in a similar situation 10 years ago. Did the clnd and barely survived 6 mos of interferon. Just wanted to add that my treatment facility – University of Iowa – doesn't do regular scans. I've only had 2 pet/cts in the past decade. Of course, if I had symptoms or concerns they would hop on it. Places differ on this so I'm interested to see what Mass General does. Best of luck,
Fen
-
- November 21, 2016 at 5:06 pm
I was in a similar situation 10 years ago. Did the clnd and barely survived 6 mos of interferon. Just wanted to add that my treatment facility – University of Iowa – doesn't do regular scans. I've only had 2 pet/cts in the past decade. Of course, if I had symptoms or concerns they would hop on it. Places differ on this so I'm interested to see what Mass General does. Best of luck,
Fen
-
- November 21, 2016 at 5:06 pm
I was in a similar situation 10 years ago. Did the clnd and barely survived 6 mos of interferon. Just wanted to add that my treatment facility – University of Iowa – doesn't do regular scans. I've only had 2 pet/cts in the past decade. Of course, if I had symptoms or concerns they would hop on it. Places differ on this so I'm interested to see what Mass General does. Best of luck,
Fen
-
- November 21, 2016 at 6:59 pm
Thanks for the responses. I haven’t read a lot of people who have thin melanomas (less than 1mm) with 1 positive node of micromets. Anyone else in a similar situation? Anyforegoing adjuvant therapy? The oncologist I spoke with said interfuron may give me a 10 percent chance of not reoccuring. I was also told Ippi has been shown to cause bowel perforation, so that certainly didn’t sell that. The doctors feel my prognosis is more like a 3A with a 20-25 percent chance or reoccurrence the next 5 years. -
- November 21, 2016 at 6:59 pm
Thanks for the responses. I haven’t read a lot of people who have thin melanomas (less than 1mm) with 1 positive node of micromets. Anyone else in a similar situation? Anyforegoing adjuvant therapy? The oncologist I spoke with said interfuron may give me a 10 percent chance of not reoccuring. I was also told Ippi has been shown to cause bowel perforation, so that certainly didn’t sell that. The doctors feel my prognosis is more like a 3A with a 20-25 percent chance or reoccurrence the next 5 years.-
- November 21, 2016 at 8:25 pm
Your oncologist might want to lower that interferon # of 10% down to 2-4% , and he might want to have a serious conversation about risks for clinical depression that have occurred with interferon treatments. Ipi has some pretty serious risk at 10mg/kg but the data shows that it works in about 25% of the patients. In the near future hopefully pd-1 drugs will be available. One other thing about interferon, if my memory is correct ,I believe most of the people that did show some response were in the ulcerated group. Maybe some one can correct me on the exact details of ulcerated and interferon. Best wishes with the journey!!!Ed
-
- November 21, 2016 at 8:25 pm
Your oncologist might want to lower that interferon # of 10% down to 2-4% , and he might want to have a serious conversation about risks for clinical depression that have occurred with interferon treatments. Ipi has some pretty serious risk at 10mg/kg but the data shows that it works in about 25% of the patients. In the near future hopefully pd-1 drugs will be available. One other thing about interferon, if my memory is correct ,I believe most of the people that did show some response were in the ulcerated group. Maybe some one can correct me on the exact details of ulcerated and interferon. Best wishes with the journey!!!Ed
-
- November 21, 2016 at 8:25 pm
Your oncologist might want to lower that interferon # of 10% down to 2-4% , and he might want to have a serious conversation about risks for clinical depression that have occurred with interferon treatments. Ipi has some pretty serious risk at 10mg/kg but the data shows that it works in about 25% of the patients. In the near future hopefully pd-1 drugs will be available. One other thing about interferon, if my memory is correct ,I believe most of the people that did show some response were in the ulcerated group. Maybe some one can correct me on the exact details of ulcerated and interferon. Best wishes with the journey!!!Ed
-
- November 21, 2016 at 6:59 pm
Thanks for the responses. I haven’t read a lot of people who have thin melanomas (less than 1mm) with 1 positive node of micromets. Anyone else in a similar situation? Anyforegoing adjuvant therapy? The oncologist I spoke with said interfuron may give me a 10 percent chance of not reoccuring. I was also told Ippi has been shown to cause bowel perforation, so that certainly didn’t sell that. The doctors feel my prognosis is more like a 3A with a 20-25 percent chance or reoccurrence the next 5 years. -
- November 22, 2016 at 2:10 am
Hi-
My primary was biopsied Nov 2015 and was .6mm, non- ulcerated, mitotic rate of 2 and yet I ended up with macrometastis in a total of 4 nodes (I had a CLND after finding an enlarged node in my neck which was biospied and positive for mel), making me a 3c, four months after my WLE. My onc did not recommend either interferon or ipi, just close monitoring, and I now am going for a lung biopsy in two days for probable lung mets. I am not convinced that I wouldn't have progressed regardless, as the lung nodules have been present and growing since my first scans in April.
There is no one clear path to follow as you can see from all of the stories here. It is an imperfect science with new research and recommendations coming out all the time. I hope that you find a plan that you feel comfortable with and wish you all the best.
Peggy
-
- November 22, 2016 at 2:10 am
Hi-
My primary was biopsied Nov 2015 and was .6mm, non- ulcerated, mitotic rate of 2 and yet I ended up with macrometastis in a total of 4 nodes (I had a CLND after finding an enlarged node in my neck which was biospied and positive for mel), making me a 3c, four months after my WLE. My onc did not recommend either interferon or ipi, just close monitoring, and I now am going for a lung biopsy in two days for probable lung mets. I am not convinced that I wouldn't have progressed regardless, as the lung nodules have been present and growing since my first scans in April.
There is no one clear path to follow as you can see from all of the stories here. It is an imperfect science with new research and recommendations coming out all the time. I hope that you find a plan that you feel comfortable with and wish you all the best.
Peggy
-
- November 22, 2016 at 2:10 am
Hi-
My primary was biopsied Nov 2015 and was .6mm, non- ulcerated, mitotic rate of 2 and yet I ended up with macrometastis in a total of 4 nodes (I had a CLND after finding an enlarged node in my neck which was biospied and positive for mel), making me a 3c, four months after my WLE. My onc did not recommend either interferon or ipi, just close monitoring, and I now am going for a lung biopsy in two days for probable lung mets. I am not convinced that I wouldn't have progressed regardless, as the lung nodules have been present and growing since my first scans in April.
There is no one clear path to follow as you can see from all of the stories here. It is an imperfect science with new research and recommendations coming out all the time. I hope that you find a plan that you feel comfortable with and wish you all the best.
Peggy
- You must be logged in to reply to this topic.