Visit to Moffitt

I'm 3b as well since 2013. I go to mayo. I would get a new melanoma doctor if you are not 100% with this one. I would run from any dr that said interferon. I chose watch and wait and so far so good. Unfortunately there is no magic bullet for melanoma as of yet and personally I don't want to poison myself with the single digit chance that it might help something that may never occur. 

I'm 3b as well since 2013. I go to mayo. I would get a new melanoma doctor if you are not 100% with this one. I would run from any dr that said interferon. I chose watch and wait and so far so good. Unfortunately there is no magic bullet for melanoma as of yet and personally I don't want to poison myself with the single digit chance that it might help something that may never occur. 

I'm 3b as well since 2013. I go to mayo. I would get a new melanoma doctor if you are not 100% with this one. I would run from any dr that said interferon. I chose watch and wait and so far so good. Unfortunately there is no magic bullet for melanoma as of yet and personally I don't want to poison myself with the single digit chance that it might help something that may never occur. 

Hi Patti, isn't adjuvant stage 3 melanoma fun!!!!! You almost need to have an advanced medical degree just to be able to compare the choices which are not great at present. I think the future with Pd-1 drugs might be the best choice but without the data being mature it is still a guessing game. Not every one is ready to try a clinical trial especially when some of the Pd-1 trials are set up with Interferon and not placebo, so that they can say which is better for patients? I have a video with Dr. Jason Luke of Chicago talking to Catherine Poole of the Melanoma International Foundation. He still recommend watch and wait as the standard and he gives a pretty detailed description of the choices for stage 3 folk. If you want to skip over some of the details and get to the good stuff, I would recommend starting at either the 25min mark or the 35min mark. Best wishes with making a decision!!!!Ed      http://melanomainternational.org/webinar/2016/01/decision-making-for-melanoma-stage-iii-beyond/#.V30JMM6cHIX       

P.S. you might have to register on the Melanoma International Foundation!!!! They don't send out junk mail afterwards!!!!   

Hi Patti, isn't adjuvant stage 3 melanoma fun!!!!! You almost need to have an advanced medical degree just to be able to compare the choices which are not great at present. I think the future with Pd-1 drugs might be the best choice but without the data being mature it is still a guessing game. Not every one is ready to try a clinical trial especially when some of the Pd-1 trials are set up with Interferon and not placebo, so that they can say which is better for patients? I have a video with Dr. Jason Luke of Chicago talking to Catherine Poole of the Melanoma International Foundation. He still recommend watch and wait as the standard and he gives a pretty detailed description of the choices for stage 3 folk. If you want to skip over some of the details and get to the good stuff, I would recommend starting at either the 25min mark or the 35min mark. Best wishes with making a decision!!!!Ed      http://melanomainternational.org/webinar/2016/01/decision-making-for-melanoma-stage-iii-beyond/#.V30JMM6cHIX       

P.S. you might have to register on the Melanoma International Foundation!!!! They don't send out junk mail afterwards!!!!   

Hi Patti, isn't adjuvant stage 3 melanoma fun!!!!! You almost need to have an advanced medical degree just to be able to compare the choices which are not great at present. I think the future with Pd-1 drugs might be the best choice but without the data being mature it is still a guessing game. Not every one is ready to try a clinical trial especially when some of the Pd-1 trials are set up with Interferon and not placebo, so that they can say which is better for patients? I have a video with Dr. Jason Luke of Chicago talking to Catherine Poole of the Melanoma International Foundation. He still recommend watch and wait as the standard and he gives a pretty detailed description of the choices for stage 3 folk. If you want to skip over some of the details and get to the good stuff, I would recommend starting at either the 25min mark or the 35min mark. Best wishes with making a decision!!!!Ed      http://melanomainternational.org/webinar/2016/01/decision-making-for-melanoma-stage-iii-beyond/#.V30JMM6cHIX       

P.S. you might have to register on the Melanoma International Foundation!!!! They don't send out junk mail afterwards!!!!   

When I graduated to stage 3B, there were no good choices available for me either.  There was one clinical trial I was interested in, but I was not HLA2A positive.  Therefore, I didn't qualify.  The other trial offered at that time had a placebo wing to it and I didn't like the chance of going through treatment for nothing.  I was going to opt for watch and wait until my onc discussed Leukine.  It is not the preferred treatment, but it is the same as Interferon without the side effects.  I have been on it for 8 months and had had little to no issues.  There are better options out there, but none worked out for me at the time of my diagnosis.  I wouldn't have done Interferon either.  The Leukine may not provide much benefit, but the potential benefit is worth going after since the side effects are minimal. 

So sorry you have to go through this… 

Brad

When I graduated to stage 3B, there were no good choices available for me either.  There was one clinical trial I was interested in, but I was not HLA2A positive.  Therefore, I didn't qualify.  The other trial offered at that time had a placebo wing to it and I didn't like the chance of going through treatment for nothing.  I was going to opt for watch and wait until my onc discussed Leukine.  It is not the preferred treatment, but it is the same as Interferon without the side effects.  I have been on it for 8 months and had had little to no issues.  There are better options out there, but none worked out for me at the time of my diagnosis.  I wouldn't have done Interferon either.  The Leukine may not provide much benefit, but the potential benefit is worth going after since the side effects are minimal. 

So sorry you have to go through this… 

Brad

When I graduated to stage 3B, there were no good choices available for me either.  There was one clinical trial I was interested in, but I was not HLA2A positive.  Therefore, I didn't qualify.  The other trial offered at that time had a placebo wing to it and I didn't like the chance of going through treatment for nothing.  I was going to opt for watch and wait until my onc discussed Leukine.  It is not the preferred treatment, but it is the same as Interferon without the side effects.  I have been on it for 8 months and had had little to no issues.  There are better options out there, but none worked out for me at the time of my diagnosis.  I wouldn't have done Interferon either.  The Leukine may not provide much benefit, but the potential benefit is worth going after since the side effects are minimal. 

So sorry you have to go through this… 

Brad

This roller coaster is fun, huh? Ugh, I totally understand not wanting Interferon, don't blame you there. I also understand the doctors concern about Ipi since you already have IBS, your chance of getting colitis is probably higher than someone without gastro issues already. Watch and wait is still the number one recommended treatment for our stage. My onc, who does a lot of research and study on melanoma and the different immunotherapy drugs, told me watch and wait was #1 and Yervoy was #2, but that it was totally up to whatever I was comfortable with doing. If you're comfortable with watch and wait, doing scans and follow up appointments for a while, then you'll be able to move on with life a lot faster than us that are stuck dealing with possible side effects and scheduling life around the next infusion. 

It's your body and your life, you know in your gut what you feel most comfortable doing.

 

This roller coaster is fun, huh? Ugh, I totally understand not wanting Interferon, don't blame you there. I also understand the doctors concern about Ipi since you already have IBS, your chance of getting colitis is probably higher than someone without gastro issues already. Watch and wait is still the number one recommended treatment for our stage. My onc, who does a lot of research and study on melanoma and the different immunotherapy drugs, told me watch and wait was #1 and Yervoy was #2, but that it was totally up to whatever I was comfortable with doing. If you're comfortable with watch and wait, doing scans and follow up appointments for a while, then you'll be able to move on with life a lot faster than us that are stuck dealing with possible side effects and scheduling life around the next infusion. 

It's your body and your life, you know in your gut what you feel most comfortable doing.

 

This roller coaster is fun, huh? Ugh, I totally understand not wanting Interferon, don't blame you there. I also understand the doctors concern about Ipi since you already have IBS, your chance of getting colitis is probably higher than someone without gastro issues already. Watch and wait is still the number one recommended treatment for our stage. My onc, who does a lot of research and study on melanoma and the different immunotherapy drugs, told me watch and wait was #1 and Yervoy was #2, but that it was totally up to whatever I was comfortable with doing. If you're comfortable with watch and wait, doing scans and follow up appointments for a while, then you'll be able to move on with life a lot faster than us that are stuck dealing with possible side effects and scheduling life around the next infusion. 

It's your body and your life, you know in your gut what you feel most comfortable doing.

 

Hi Patti! I too am a Stage 3B and was diagnosed in October of last year so I'm about 9 months out. I am in MN and I have seen two melanoma oncologists. The first was hard core pushing interferon and CLND. My family and I all did not feel comfortable with that oncologist so I chose to get a second opinion. My second onc went through all of the same options you discussed above in great detail and in the end said he strongly felt the best option was no CLND (he felt it was less than a 5% chance it would be in any other nodes) and watch and wait. I am very comfortable with that approach. I feel the same as you, why do a treatment or surgery that could cause horrible side effects and possible life long issues to treat something that isn't there and may never be back. Plus I am being watched so closely by my onc, dermatologist and surgeon that if it does come back we will catch it extremely early and I will cross that road when I get there. 

No matter what, the treatment is whatever you feel comfortable with. Everyone is different and everyone's melanoma is different. Example, my coworker and I were ironically diagnosed with melanoma a few weeks apart. He is a 3A. He had the CLND and interferon (forced upon him from the first onc I saw that I didn't like) and now he just had a PET that showed it spread. So really the interferon and CLND was for nothing because it came back anyway and he has suffered so much in the last 9 months.

Currently I am having CT scans and bloodwork every 3 months with my onc, skin checks with my dermatologist every 3 months and I see my surgeon who did my WLE every 3 months to check my incision (although I think my next visit with him will be the last he will need to see me). All the doctor visits are extremely terrifying and stressful but I am also so grateful to be monitored so closely. 

Watch and wait is a completely acceptable treatment plan in my opinion but again, do what you feel comfortable with and please don't be afraid to get a second opinion. I am so happy I did! It is so important to have doctors that you trust 100%! It makes this journey a little less stressful.

Jenna

Hi Patti! I too am a Stage 3B and was diagnosed in October of last year so I'm about 9 months out. I am in MN and I have seen two melanoma oncologists. The first was hard core pushing interferon and CLND. My family and I all did not feel comfortable with that oncologist so I chose to get a second opinion. My second onc went through all of the same options you discussed above in great detail and in the end said he strongly felt the best option was no CLND (he felt it was less than a 5% chance it would be in any other nodes) and watch and wait. I am very comfortable with that approach. I feel the same as you, why do a treatment or surgery that could cause horrible side effects and possible life long issues to treat something that isn't there and may never be back. Plus I am being watched so closely by my onc, dermatologist and surgeon that if it does come back we will catch it extremely early and I will cross that road when I get there. 

No matter what, the treatment is whatever you feel comfortable with. Everyone is different and everyone's melanoma is different. Example, my coworker and I were ironically diagnosed with melanoma a few weeks apart. He is a 3A. He had the CLND and interferon (forced upon him from the first onc I saw that I didn't like) and now he just had a PET that showed it spread. So really the interferon and CLND was for nothing because it came back anyway and he has suffered so much in the last 9 months.

Currently I am having CT scans and bloodwork every 3 months with my onc, skin checks with my dermatologist every 3 months and I see my surgeon who did my WLE every 3 months to check my incision (although I think my next visit with him will be the last he will need to see me). All the doctor visits are extremely terrifying and stressful but I am also so grateful to be monitored so closely. 

Watch and wait is a completely acceptable treatment plan in my opinion but again, do what you feel comfortable with and please don't be afraid to get a second opinion. I am so happy I did! It is so important to have doctors that you trust 100%! It makes this journey a little less stressful.

Jenna

Hi Patti! I too am a Stage 3B and was diagnosed in October of last year so I'm about 9 months out. I am in MN and I have seen two melanoma oncologists. The first was hard core pushing interferon and CLND. My family and I all did not feel comfortable with that oncologist so I chose to get a second opinion. My second onc went through all of the same options you discussed above in great detail and in the end said he strongly felt the best option was no CLND (he felt it was less than a 5% chance it would be in any other nodes) and watch and wait. I am very comfortable with that approach. I feel the same as you, why do a treatment or surgery that could cause horrible side effects and possible life long issues to treat something that isn't there and may never be back. Plus I am being watched so closely by my onc, dermatologist and surgeon that if it does come back we will catch it extremely early and I will cross that road when I get there. 

No matter what, the treatment is whatever you feel comfortable with. Everyone is different and everyone's melanoma is different. Example, my coworker and I were ironically diagnosed with melanoma a few weeks apart. He is a 3A. He had the CLND and interferon (forced upon him from the first onc I saw that I didn't like) and now he just had a PET that showed it spread. So really the interferon and CLND was for nothing because it came back anyway and he has suffered so much in the last 9 months.

Currently I am having CT scans and bloodwork every 3 months with my onc, skin checks with my dermatologist every 3 months and I see my surgeon who did my WLE every 3 months to check my incision (although I think my next visit with him will be the last he will need to see me). All the doctor visits are extremely terrifying and stressful but I am also so grateful to be monitored so closely. 

Watch and wait is a completely acceptable treatment plan in my opinion but again, do what you feel comfortable with and please don't be afraid to get a second opinion. I am so happy I did! It is so important to have doctors that you trust 100%! It makes this journey a little less stressful.

Jenna

Hey Patti. Doesn’t this decision making suck?! Having to make these big decisions is so difficult! It seems like you’re approaching it the right way, though – collect as much info as you possibly can and go with your gut. We all have an individual journey, and you are the only one who has to walk in your shoes, so do what is best for you and don’t look back. If you choose “watch and wait” as your path, you can still be proactive – ultrasound of the groin lymph nodes is an option and increase your immune system naturally (exercise, good sleep habits, eat well, decrease stress). The choices for stage 3 do suck, but your outlook on your prognosis doesn’t have to. Whatever you choose, believe in your medicine!

Lauren

Hey Patti. Doesn’t this decision making suck?! Having to make these big decisions is so difficult! It seems like you’re approaching it the right way, though – collect as much info as you possibly can and go with your gut. We all have an individual journey, and you are the only one who has to walk in your shoes, so do what is best for you and don’t look back. If you choose “watch and wait” as your path, you can still be proactive – ultrasound of the groin lymph nodes is an option and increase your immune system naturally (exercise, good sleep habits, eat well, decrease stress). The choices for stage 3 do suck, but your outlook on your prognosis doesn’t have to. Whatever you choose, believe in your medicine!

Lauren

Hey Patti. Doesn’t this decision making suck?! Having to make these big decisions is so difficult! It seems like you’re approaching it the right way, though – collect as much info as you possibly can and go with your gut. We all have an individual journey, and you are the only one who has to walk in your shoes, so do what is best for you and don’t look back. If you choose “watch and wait” as your path, you can still be proactive – ultrasound of the groin lymph nodes is an option and increase your immune system naturally (exercise, good sleep habits, eat well, decrease stress). The choices for stage 3 do suck, but your outlook on your prognosis doesn’t have to. Whatever you choose, believe in your medicine!

Lauren

I had the exact same discussion with my Dr. in May of this year. I received the exact statistics and options you received. He was not a melanoma Dr. I felt strongly enough that I demanded Yervoy 10 mg treatment. I also have IBS.

He delayed and tried to get me to change my mind. I finally recieved my first dose in late May. I know everyone reacts different but I have been ok so far in my treatments with one more left. I am going to go to Duke to see a melanoma Dr. My personal feeling was that I at least want to try and if the side effects of yervoy are intolerable then so be it. I was not going to accept, lets do interferon because it is traditional. 

I am stage 3 c and do not want to think that I passed up my chance. Ultimately it is my life and as I left my Doc appointment literally more confused than when I was the day before, I wanted the best chance, not the traditional. I chose my treatment.

I had the exact same discussion with my Dr. in May of this year. I received the exact statistics and options you received. He was not a melanoma Dr. I felt strongly enough that I demanded Yervoy 10 mg treatment. I also have IBS.

He delayed and tried to get me to change my mind. I finally recieved my first dose in late May. I know everyone reacts different but I have been ok so far in my treatments with one more left. I am going to go to Duke to see a melanoma Dr. My personal feeling was that I at least want to try and if the side effects of yervoy are intolerable then so be it. I was not going to accept, lets do interferon because it is traditional. 

I am stage 3 c and do not want to think that I passed up my chance. Ultimately it is my life and as I left my Doc appointment literally more confused than when I was the day before, I wanted the best chance, not the traditional. I chose my treatment.

I had the exact same discussion with my Dr. in May of this year. I received the exact statistics and options you received. He was not a melanoma Dr. I felt strongly enough that I demanded Yervoy 10 mg treatment. I also have IBS.

He delayed and tried to get me to change my mind. I finally recieved my first dose in late May. I know everyone reacts different but I have been ok so far in my treatments with one more left. I am going to go to Duke to see a melanoma Dr. My personal feeling was that I at least want to try and if the side effects of yervoy are intolerable then so be it. I was not going to accept, lets do interferon because it is traditional. 

I am stage 3 c and do not want to think that I passed up my chance. Ultimately it is my life and as I left my Doc appointment literally more confused than when I was the day before, I wanted the best chance, not the traditional. I chose my treatment.