Stage 3B – looking for others

Hello Sharon,

I am also 3B. I am 2 years NED. In fact, Saturday will be the 2nd anniversary of the surgery to remove the lymph nodes in my left groin. It was my 3rd surgery in 5 weeks. My doctor did not think that Interferon was necessary, but allowed me to try it. I took one dose and decided that for how horrible it was and my doctor didn't think it would improve my chances all that much, that I would not continue. It was a hard decision. I wanted to do something, anything. But that was just the initial panic of the situation. I am completely comfortable at this point that I did not continue the Interferon. I have a CT scan once a year now. The last time I had one, I told the oncologist that I was having headaches, probably sinus related, so he did a scan of the head as well, just to be on the safe side. I see a dermatologist every three months, and she had a list of other things I needed to do regularly. Melanoma can show up anywhere so in order to have the earliest possible detection should it come back, I go to the dentist, have mammograms, have my eyes checked by an ophthalmologist, see a podiatrist (melanoma was on the bottom of my foot), and of course the oncologist. Now that I have hit the 2-year mark, some of the doctors that I was seeing every 3 months will be seen every 6 months. It seems like I am always running to some doctor or another, but it would be worth it for early detection.

I had some complications from the last surgery that I am still trying to get a handle on, but other than that I am doing fine.

I also am mainly a lurker on this board, but I find it very encouraging. When someone posts their NED anniversary is the absolute best! It gives me hope.

I wish you well.

Cheri

Hello Sharon,

I am also 3B. I am 2 years NED. In fact, Saturday will be the 2nd anniversary of the surgery to remove the lymph nodes in my left groin. It was my 3rd surgery in 5 weeks. My doctor did not think that Interferon was necessary, but allowed me to try it. I took one dose and decided that for how horrible it was and my doctor didn't think it would improve my chances all that much, that I would not continue. It was a hard decision. I wanted to do something, anything. But that was just the initial panic of the situation. I am completely comfortable at this point that I did not continue the Interferon. I have a CT scan once a year now. The last time I had one, I told the oncologist that I was having headaches, probably sinus related, so he did a scan of the head as well, just to be on the safe side. I see a dermatologist every three months, and she had a list of other things I needed to do regularly. Melanoma can show up anywhere so in order to have the earliest possible detection should it come back, I go to the dentist, have mammograms, have my eyes checked by an ophthalmologist, see a podiatrist (melanoma was on the bottom of my foot), and of course the oncologist. Now that I have hit the 2-year mark, some of the doctors that I was seeing every 3 months will be seen every 6 months. It seems like I am always running to some doctor or another, but it would be worth it for early detection.

I had some complications from the last surgery that I am still trying to get a handle on, but other than that I am doing fine.

I also am mainly a lurker on this board, but I find it very encouraging. When someone posts their NED anniversary is the absolute best! It gives me hope.

I wish you well.

Cheri

Hello Sharon,

I am also 3B. I am 2 years NED. In fact, Saturday will be the 2nd anniversary of the surgery to remove the lymph nodes in my left groin. It was my 3rd surgery in 5 weeks. My doctor did not think that Interferon was necessary, but allowed me to try it. I took one dose and decided that for how horrible it was and my doctor didn't think it would improve my chances all that much, that I would not continue. It was a hard decision. I wanted to do something, anything. But that was just the initial panic of the situation. I am completely comfortable at this point that I did not continue the Interferon. I have a CT scan once a year now. The last time I had one, I told the oncologist that I was having headaches, probably sinus related, so he did a scan of the head as well, just to be on the safe side. I see a dermatologist every three months, and she had a list of other things I needed to do regularly. Melanoma can show up anywhere so in order to have the earliest possible detection should it come back, I go to the dentist, have mammograms, have my eyes checked by an ophthalmologist, see a podiatrist (melanoma was on the bottom of my foot), and of course the oncologist. Now that I have hit the 2-year mark, some of the doctors that I was seeing every 3 months will be seen every 6 months. It seems like I am always running to some doctor or another, but it would be worth it for early detection.

I had some complications from the last surgery that I am still trying to get a handle on, but other than that I am doing fine.

I also am mainly a lurker on this board, but I find it very encouraging. When someone posts their NED anniversary is the absolute best! It gives me hope.

I wish you well.

Cheri

Sharon:

I, too, am Stage IIIB. My original surgery was Feb, 2011 with the removal of the melanoma on my nose (a freckle gone bad in 11 years). Thought everything was fine, SNB negative, etc. Fast forward 7 months and I noticed a swollen lymph node below my chin. The melanoma had spread and I had neck dissection (30+ lymph nodes removed) on Oct 14th. Only the original lymph node had melanoma. I was given the choice to do the IPPI/Interferon trial as well and I declined. I changed my diet to basically no sugar except the natural sugar in fruits, only occasional organic chicken, just eating fish, fruit and vegetables for the most part. I take Vitamin D and are looking into other supplements. I see my dermatologist every 3 months; my surgical oncologist every 3 months; my melanoma specialist 2x a year and will see my local oncologist 3x a year. I just bought a juicer as well and will eventually replace my lunch with a vegetable or fruit juice.

My sister is an acupuncturist so she is giving me some treatments as well. I plan to begin yoga too.

Kelly

Sharon:

I, too, am Stage IIIB. My original surgery was Feb, 2011 with the removal of the melanoma on my nose (a freckle gone bad in 11 years). Thought everything was fine, SNB negative, etc. Fast forward 7 months and I noticed a swollen lymph node below my chin. The melanoma had spread and I had neck dissection (30+ lymph nodes removed) on Oct 14th. Only the original lymph node had melanoma. I was given the choice to do the IPPI/Interferon trial as well and I declined. I changed my diet to basically no sugar except the natural sugar in fruits, only occasional organic chicken, just eating fish, fruit and vegetables for the most part. I take Vitamin D and are looking into other supplements. I see my dermatologist every 3 months; my surgical oncologist every 3 months; my melanoma specialist 2x a year and will see my local oncologist 3x a year. I just bought a juicer as well and will eventually replace my lunch with a vegetable or fruit juice.

My sister is an acupuncturist so she is giving me some treatments as well. I plan to begin yoga too.

Kelly

Sharon:

I, too, am Stage IIIB. My original surgery was Feb, 2011 with the removal of the melanoma on my nose (a freckle gone bad in 11 years). Thought everything was fine, SNB negative, etc. Fast forward 7 months and I noticed a swollen lymph node below my chin. The melanoma had spread and I had neck dissection (30+ lymph nodes removed) on Oct 14th. Only the original lymph node had melanoma. I was given the choice to do the IPPI/Interferon trial as well and I declined. I changed my diet to basically no sugar except the natural sugar in fruits, only occasional organic chicken, just eating fish, fruit and vegetables for the most part. I take Vitamin D and are looking into other supplements. I see my dermatologist every 3 months; my surgical oncologist every 3 months; my melanoma specialist 2x a year and will see my local oncologist 3x a year. I just bought a juicer as well and will eventually replace my lunch with a vegetable or fruit juice.

My sister is an acupuncturist so she is giving me some treatments as well. I plan to begin yoga too.

Kelly

Hi Sharon,

I am also 3B. (Lower leg primary with 2 positive groin lymph nodes.)I will be 11 years NED in March! I only lasted 8 doses of high dose interferon, that was my only treatment. I try to eat healthy and live a positive, happy lifestyle. I still have some lymphedema in my leg but it does not bother me much. I did not have any scans as part of my treatment. I'm sending positive thoughts your way.

Cynthia C

Hi Sharon,

I am also 3B. (Lower leg primary with 2 positive groin lymph nodes.)I will be 11 years NED in March! I only lasted 8 doses of high dose interferon, that was my only treatment. I try to eat healthy and live a positive, happy lifestyle. I still have some lymphedema in my leg but it does not bother me much. I did not have any scans as part of my treatment. I'm sending positive thoughts your way.

Cynthia C

Hi Sharon,

I am also 3B. (Lower leg primary with 2 positive groin lymph nodes.)I will be 11 years NED in March! I only lasted 8 doses of high dose interferon, that was my only treatment. I try to eat healthy and live a positive, happy lifestyle. I still have some lymphedema in my leg but it does not bother me much. I did not have any scans as part of my treatment. I'm sending positive thoughts your way.

Cynthia C

I'm stage IIIB as well I go next Tuesday to have the lymph nodes in my neck removed and my salivia gland on that side removed as weel. I was also offered the same clinical trail but decieded against it for right now. If I have more lymph nodes come back positive I will most likely do it but so far only one from my SLNB came back positive so i'm just waiting to see what happens with this other surgery. What i found from researching is that there doesnt seem to be alot of options out there for stage 3.

I'm stage IIIB as well I go next Tuesday to have the lymph nodes in my neck removed and my salivia gland on that side removed as weel. I was also offered the same clinical trail but decieded against it for right now. If I have more lymph nodes come back positive I will most likely do it but so far only one from my SLNB came back positive so i'm just waiting to see what happens with this other surgery. What i found from researching is that there doesnt seem to be alot of options out there for stage 3.

I'm stage IIIB as well I go next Tuesday to have the lymph nodes in my neck removed and my salivia gland on that side removed as weel. I was also offered the same clinical trail but decieded against it for right now. If I have more lymph nodes come back positive I will most likely do it but so far only one from my SLNB came back positive so i'm just waiting to see what happens with this other surgery. What i found from researching is that there doesnt seem to be alot of options out there for stage 3.

Hi Sharon,

I am stage 3a, so I am pretty close.  I have PET/CT scans every 3 months.  This April will be my 2 year anniversary so I am hopeful I can go to every 6 months.  I am wondering why you want brain scans since your primary was on your Leg.  I have yet to have a brain scan and my primary was on my trunk.  If you are having any symptoms that are numerological than discuss them with your oncologist, otherwise I really would not worry about it. 

Mary

Stage 3

Hi Sharon,

I am stage 3a, so I am pretty close.  I have PET/CT scans every 3 months.  This April will be my 2 year anniversary so I am hopeful I can go to every 6 months.  I am wondering why you want brain scans since your primary was on your Leg.  I have yet to have a brain scan and my primary was on my trunk.  If you are having any symptoms that are numerological than discuss them with your oncologist, otherwise I really would not worry about it. 

Mary

Stage 3

Hi Sharon,

I am stage 3a, so I am pretty close.  I have PET/CT scans every 3 months.  This April will be my 2 year anniversary so I am hopeful I can go to every 6 months.  I am wondering why you want brain scans since your primary was on your Leg.  I have yet to have a brain scan and my primary was on my trunk.  If you are having any symptoms that are numerological than discuss them with your oncologist, otherwise I really would not worry about it. 

Mary

Stage 3

Brand new to the forum as well, and stage IIIb.  (Hi!) 

I'm going back and forth myself right now for the interferon, I was diagnosed with Clark IV, Breslow 4.1mm, ulcerated with Mitosis.  I just went to Chicago to see about the ipi-inf clinical trial but decided against it because I'd have to commute 2hrs everyday if I was chosen to be on inf, and I can't afford to leave my job right now. My onc has been encouraging me to join a trial, but I can't find one that I qualify for that would allow me to even think about keeping my job while doing.  I already lost almost 2 months of the year when I was diagnosed and had lymph node surgeries.  I think I'm going to try inf, but I worry because I've dealt with depression issues since I was in high school (the worst was when I had severe post-partum anxiety and depression after my son was born, I was put on a cocktail of 3 anti-depressants and still had symptoms).

I don't want to just sit back and "wait-and-watch"…  waiting for my mole to normalize itself was how I ended up not going in to get it checked before it got bad, so I'd rather do SOMETHING to even slightly improve my outcome. But there's not really anything else out there that I've seen…

And thank you to everyone on here, I've been lurking as a guest since my diagnosis in Jan, I've gotten great questions for my doctors that I wouldn't have even thought to ask, and seeing all the celebrations helps me not to dwell too much on the worry!  🙂

Brand new to the forum as well, and stage IIIb.  (Hi!) 

I'm going back and forth myself right now for the interferon, I was diagnosed with Clark IV, Breslow 4.1mm, ulcerated with Mitosis.  I just went to Chicago to see about the ipi-inf clinical trial but decided against it because I'd have to commute 2hrs everyday if I was chosen to be on inf, and I can't afford to leave my job right now. My onc has been encouraging me to join a trial, but I can't find one that I qualify for that would allow me to even think about keeping my job while doing.  I already lost almost 2 months of the year when I was diagnosed and had lymph node surgeries.  I think I'm going to try inf, but I worry because I've dealt with depression issues since I was in high school (the worst was when I had severe post-partum anxiety and depression after my son was born, I was put on a cocktail of 3 anti-depressants and still had symptoms).

I don't want to just sit back and "wait-and-watch"…  waiting for my mole to normalize itself was how I ended up not going in to get it checked before it got bad, so I'd rather do SOMETHING to even slightly improve my outcome. But there's not really anything else out there that I've seen…

And thank you to everyone on here, I've been lurking as a guest since my diagnosis in Jan, I've gotten great questions for my doctors that I wouldn't have even thought to ask, and seeing all the celebrations helps me not to dwell too much on the worry!  🙂

Brand new to the forum as well, and stage IIIb.  (Hi!) 

I'm going back and forth myself right now for the interferon, I was diagnosed with Clark IV, Breslow 4.1mm, ulcerated with Mitosis.  I just went to Chicago to see about the ipi-inf clinical trial but decided against it because I'd have to commute 2hrs everyday if I was chosen to be on inf, and I can't afford to leave my job right now. My onc has been encouraging me to join a trial, but I can't find one that I qualify for that would allow me to even think about keeping my job while doing.  I already lost almost 2 months of the year when I was diagnosed and had lymph node surgeries.  I think I'm going to try inf, but I worry because I've dealt with depression issues since I was in high school (the worst was when I had severe post-partum anxiety and depression after my son was born, I was put on a cocktail of 3 anti-depressants and still had symptoms).

I don't want to just sit back and "wait-and-watch"…  waiting for my mole to normalize itself was how I ended up not going in to get it checked before it got bad, so I'd rather do SOMETHING to even slightly improve my outcome. But there's not really anything else out there that I've seen…

And thank you to everyone on here, I've been lurking as a guest since my diagnosis in Jan, I've gotten great questions for my doctors that I wouldn't have even thought to ask, and seeing all the celebrations helps me not to dwell too much on the worry!  🙂