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- This topic has 33 replies, 6 voices, and was last updated 9 years, 5 months ago by
Chance16.
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- June 27, 2016 at 11:07 pm
Hello, I'm new to the forum…..In May I had my annual skin exam which they found a mole on my left ankle to be positive for melanoma (1.1 mm). In June I had WLE and SNLB; margins were clear but the sentinel node was positive. My PET/CT scans and MRI were negative for mets to organs but there were some nodes but doc was not concerned and felt good with results. My surgical oncologists wants to do a CLND which I do not want (no nodes lit up in my left groin). He also said there was no drug therapy for me (Stage 3C). I am going to Moffitt Cancer Center in Tampa for a second opinion. I would appreciate any thoughts, suggestions or experiences. Thank you.
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- June 27, 2016 at 11:27 pm
Hi Chance,
First of all, sorry to hear about all of this. Moffitt is an excellent choice, I wished I still lived in the are so I could get all my treatment there. I'm not an expert but… I have been on a stage IIIb/c clinical trial and I believe the FDA approved Ipi last year without the need for a clinical trial.
Hang in there…
http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm469944.htm
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- June 27, 2016 at 11:27 pm
Hi Chance,
First of all, sorry to hear about all of this. Moffitt is an excellent choice, I wished I still lived in the are so I could get all my treatment there. I'm not an expert but… I have been on a stage IIIb/c clinical trial and I believe the FDA approved Ipi last year without the need for a clinical trial.
Hang in there…
http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm469944.htm
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- June 28, 2016 at 1:19 pm
Thank you for your support. I haven't had my appointment with Moffitt yet, I'm still waiting to hear from them. I feel like I'm in limbo. I hope ipi is working for you. Have you had many side effects from ipi? How have you been managing them? Thank you again for your answers.
Patti
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- June 28, 2016 at 1:19 pm
Thank you for your support. I haven't had my appointment with Moffitt yet, I'm still waiting to hear from them. I feel like I'm in limbo. I hope ipi is working for you. Have you had many side effects from ipi? How have you been managing them? Thank you again for your answers.
Patti
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- June 28, 2016 at 1:19 pm
Thank you for your support. I haven't had my appointment with Moffitt yet, I'm still waiting to hear from them. I feel like I'm in limbo. I hope ipi is working for you. Have you had many side effects from ipi? How have you been managing them? Thank you again for your answers.
Patti
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- June 27, 2016 at 11:27 pm
Hi Chance,
First of all, sorry to hear about all of this. Moffitt is an excellent choice, I wished I still lived in the are so I could get all my treatment there. I'm not an expert but… I have been on a stage IIIb/c clinical trial and I believe the FDA approved Ipi last year without the need for a clinical trial.
Hang in there…
http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm469944.htm
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- June 27, 2016 at 11:27 pm
Welcome and I am sorry you've joined the club.
You definitely need to be treated at a melanoma center by a melanoma oncologist. Moffitt is good and I am glad to hear you will be going there for a second opinion. It is NOT true that there is no drug therapy for you. Yervoy (Ipi) was FDA approved in October 2015 for Stage 3 adjuvant treatment. Before that the only adjuvant treatment was Interferon, which has proven little to no benefit so most good docs don't even offer that anymore. So, the options you have now are:
1. Watch and wait. You can choose to do no drug treatment and be watched and scanned and monitered closely by your oncologist. This is still the top recommended option for Stage 3 right now.
2. You can start Yervoy. I have done it myself so I can answer any questions you have about it. Others on here have also been down the Ipi road, both stage 4 and stage 3 patients. It is a higher dosing for stage 3, and there are some not so fun side effects, but side effects are not a given and not everyone experiences really bad ones. For myself it's been fairly mild, side effects that have come up have been easy to treat or to deal with.
3. Clinical trial. There are some trials right now testing the other great immunotherapy drugs in an adjuvant setting, so you should ask the Moffitt oncologist about your clinical trial options, they will know what is available.
It's a crazy time, but number one thing to do now is get a melanoma oncologist. Not a regular oncologist, not an oncologist that says they have a special interest in melanoma. An oncologist who stricly and only sees melanoma patients. This cancer is different from a lot of other cancers and the immunotherapy treatments are still quite new in the oncology world. Melanoma oncologists have been dealing with these drugs the longest, so they are much more well educated about the side effects and how to properly treat them.
You've come to the right place, lots of great knowledgeable people on here that have been dealing with melanoma a long time and a lot of great support.
All the best,
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- June 27, 2016 at 11:27 pm
Welcome and I am sorry you've joined the club.
You definitely need to be treated at a melanoma center by a melanoma oncologist. Moffitt is good and I am glad to hear you will be going there for a second opinion. It is NOT true that there is no drug therapy for you. Yervoy (Ipi) was FDA approved in October 2015 for Stage 3 adjuvant treatment. Before that the only adjuvant treatment was Interferon, which has proven little to no benefit so most good docs don't even offer that anymore. So, the options you have now are:
1. Watch and wait. You can choose to do no drug treatment and be watched and scanned and monitered closely by your oncologist. This is still the top recommended option for Stage 3 right now.
2. You can start Yervoy. I have done it myself so I can answer any questions you have about it. Others on here have also been down the Ipi road, both stage 4 and stage 3 patients. It is a higher dosing for stage 3, and there are some not so fun side effects, but side effects are not a given and not everyone experiences really bad ones. For myself it's been fairly mild, side effects that have come up have been easy to treat or to deal with.
3. Clinical trial. There are some trials right now testing the other great immunotherapy drugs in an adjuvant setting, so you should ask the Moffitt oncologist about your clinical trial options, they will know what is available.
It's a crazy time, but number one thing to do now is get a melanoma oncologist. Not a regular oncologist, not an oncologist that says they have a special interest in melanoma. An oncologist who stricly and only sees melanoma patients. This cancer is different from a lot of other cancers and the immunotherapy treatments are still quite new in the oncology world. Melanoma oncologists have been dealing with these drugs the longest, so they are much more well educated about the side effects and how to properly treat them.
You've come to the right place, lots of great knowledgeable people on here that have been dealing with melanoma a long time and a lot of great support.
All the best,
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- June 27, 2016 at 11:55 pm
Jenn on number @ you say stage 3 patients get a higher dosing than stage 4 is not correct. In 2011 my husband did Yervoy (Ipi) for Stage IV and he did 10 mg/kg. Maybe right now that is the way it is but it was not always and he took it till Dec. 2013. He became NED in 2012 around Oct. and stayed on Maintenance doses of 1 every 12 weeks after the initial 4 in 12 weeks.
Judy (loving wife of Gene Stage IV and now NED)
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- June 27, 2016 at 11:55 pm
Jenn on number @ you say stage 3 patients get a higher dosing than stage 4 is not correct. In 2011 my husband did Yervoy (Ipi) for Stage IV and he did 10 mg/kg. Maybe right now that is the way it is but it was not always and he took it till Dec. 2013. He became NED in 2012 around Oct. and stayed on Maintenance doses of 1 every 12 weeks after the initial 4 in 12 weeks.
Judy (loving wife of Gene Stage IV and now NED)
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- June 28, 2016 at 12:14 am
The way that it goes now is: stage IV get 3mg/kg and stage III get 10mg/kg.
They are both 4 infusions, 3 weeks apart of the induction phase, most only do this much. Not everyone gets maintenance, but maintenance schedule is then 1 infusion every 3 months until the patient has been on Ipi 1 year.
Glad Gene is doing well.
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- June 28, 2016 at 12:14 am
The way that it goes now is: stage IV get 3mg/kg and stage III get 10mg/kg.
They are both 4 infusions, 3 weeks apart of the induction phase, most only do this much. Not everyone gets maintenance, but maintenance schedule is then 1 infusion every 3 months until the patient has been on Ipi 1 year.
Glad Gene is doing well.
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- June 28, 2016 at 12:14 am
The way that it goes now is: stage IV get 3mg/kg and stage III get 10mg/kg.
They are both 4 infusions, 3 weeks apart of the induction phase, most only do this much. Not everyone gets maintenance, but maintenance schedule is then 1 infusion every 3 months until the patient has been on Ipi 1 year.
Glad Gene is doing well.
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- June 28, 2016 at 1:51 am
This link is for Judy, to help her keep up to date on Melanoma treatments. http://global.onclive.com/web-exclusives/fda-approves-adjuvant-ipilimumab-in-melanoma
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- June 28, 2016 at 1:51 am
This link is for Judy, to help her keep up to date on Melanoma treatments. http://global.onclive.com/web-exclusives/fda-approves-adjuvant-ipilimumab-in-melanoma
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- June 28, 2016 at 1:51 am
This link is for Judy, to help her keep up to date on Melanoma treatments. http://global.onclive.com/web-exclusives/fda-approves-adjuvant-ipilimumab-in-melanoma
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- June 27, 2016 at 11:55 pm
Jenn on number @ you say stage 3 patients get a higher dosing than stage 4 is not correct. In 2011 my husband did Yervoy (Ipi) for Stage IV and he did 10 mg/kg. Maybe right now that is the way it is but it was not always and he took it till Dec. 2013. He became NED in 2012 around Oct. and stayed on Maintenance doses of 1 every 12 weeks after the initial 4 in 12 weeks.
Judy (loving wife of Gene Stage IV and now NED)
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- June 28, 2016 at 1:29 pm
Thank you very much for your advice and response. You sound very knowledgeable on the subject. I feel like I'm in limbo, I go to sleep thinking about Mel and I wake up thinking Mel. You said you experienced side effects. Were you able to manage daily activities? Keep things normal?
Thank you again,
Patti
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- June 28, 2016 at 1:29 pm
Thank you very much for your advice and response. You sound very knowledgeable on the subject. I feel like I'm in limbo, I go to sleep thinking about Mel and I wake up thinking Mel. You said you experienced side effects. Were you able to manage daily activities? Keep things normal?
Thank you again,
Patti
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- June 28, 2016 at 1:29 pm
Thank you very much for your advice and response. You sound very knowledgeable on the subject. I feel like I'm in limbo, I go to sleep thinking about Mel and I wake up thinking Mel. You said you experienced side effects. Were you able to manage daily activities? Keep things normal?
Thank you again,
Patti
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- June 28, 2016 at 3:39 pm
Yes I have been able to go to work and do normal things. I get more tired than I used to, but not to the point that it stops me from doing regular activities. Most recent side effect has been joint pain, it's starting to get a little better, but that's been the most uncomfortable one.
Others have dealt with more serious side effects than I have, but from what I have read, it seems that most are able to go about daily life fairly normal while on Ipi, and other immunotherapy drugs.
This is the most anxious time in your melanoma journey right now. We've all been there, totally understand the feeling of mel taking over your thoughts and feeling in limbo. Once you find a melanoma oncologist you're comfortable with and you get a treatment plan in place, you will start to feel more in control and not as overwhelmed.
Always here if you need to vent or ask questions.
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- June 28, 2016 at 3:39 pm
Yes I have been able to go to work and do normal things. I get more tired than I used to, but not to the point that it stops me from doing regular activities. Most recent side effect has been joint pain, it's starting to get a little better, but that's been the most uncomfortable one.
Others have dealt with more serious side effects than I have, but from what I have read, it seems that most are able to go about daily life fairly normal while on Ipi, and other immunotherapy drugs.
This is the most anxious time in your melanoma journey right now. We've all been there, totally understand the feeling of mel taking over your thoughts and feeling in limbo. Once you find a melanoma oncologist you're comfortable with and you get a treatment plan in place, you will start to feel more in control and not as overwhelmed.
Always here if you need to vent or ask questions.
-
- June 28, 2016 at 3:39 pm
Yes I have been able to go to work and do normal things. I get more tired than I used to, but not to the point that it stops me from doing regular activities. Most recent side effect has been joint pain, it's starting to get a little better, but that's been the most uncomfortable one.
Others have dealt with more serious side effects than I have, but from what I have read, it seems that most are able to go about daily life fairly normal while on Ipi, and other immunotherapy drugs.
This is the most anxious time in your melanoma journey right now. We've all been there, totally understand the feeling of mel taking over your thoughts and feeling in limbo. Once you find a melanoma oncologist you're comfortable with and you get a treatment plan in place, you will start to feel more in control and not as overwhelmed.
Always here if you need to vent or ask questions.
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- June 29, 2016 at 1:40 pm
Jenn – it's good to hear that you have manageable side effects. Thank you for your support and encouragement. I know I need to get past this and accept it but I'm so overwhelmed! Hopefully, when I get to Moffitt they will help me settle down. I have so many thoughts going through my mind; it won't turn off. I try to do things to distract me but it doesn't last long. Oh well, enough of me moaning.
Once again thank you and have a good day.
Patti
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- June 29, 2016 at 1:40 pm
Jenn – it's good to hear that you have manageable side effects. Thank you for your support and encouragement. I know I need to get past this and accept it but I'm so overwhelmed! Hopefully, when I get to Moffitt they will help me settle down. I have so many thoughts going through my mind; it won't turn off. I try to do things to distract me but it doesn't last long. Oh well, enough of me moaning.
Once again thank you and have a good day.
Patti
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- June 29, 2016 at 1:40 pm
Jenn – it's good to hear that you have manageable side effects. Thank you for your support and encouragement. I know I need to get past this and accept it but I'm so overwhelmed! Hopefully, when I get to Moffitt they will help me settle down. I have so many thoughts going through my mind; it won't turn off. I try to do things to distract me but it doesn't last long. Oh well, enough of me moaning.
Once again thank you and have a good day.
Patti
-
- June 27, 2016 at 11:27 pm
Welcome and I am sorry you've joined the club.
You definitely need to be treated at a melanoma center by a melanoma oncologist. Moffitt is good and I am glad to hear you will be going there for a second opinion. It is NOT true that there is no drug therapy for you. Yervoy (Ipi) was FDA approved in October 2015 for Stage 3 adjuvant treatment. Before that the only adjuvant treatment was Interferon, which has proven little to no benefit so most good docs don't even offer that anymore. So, the options you have now are:
1. Watch and wait. You can choose to do no drug treatment and be watched and scanned and monitered closely by your oncologist. This is still the top recommended option for Stage 3 right now.
2. You can start Yervoy. I have done it myself so I can answer any questions you have about it. Others on here have also been down the Ipi road, both stage 4 and stage 3 patients. It is a higher dosing for stage 3, and there are some not so fun side effects, but side effects are not a given and not everyone experiences really bad ones. For myself it's been fairly mild, side effects that have come up have been easy to treat or to deal with.
3. Clinical trial. There are some trials right now testing the other great immunotherapy drugs in an adjuvant setting, so you should ask the Moffitt oncologist about your clinical trial options, they will know what is available.
It's a crazy time, but number one thing to do now is get a melanoma oncologist. Not a regular oncologist, not an oncologist that says they have a special interest in melanoma. An oncologist who stricly and only sees melanoma patients. This cancer is different from a lot of other cancers and the immunotherapy treatments are still quite new in the oncology world. Melanoma oncologists have been dealing with these drugs the longest, so they are much more well educated about the side effects and how to properly treat them.
You've come to the right place, lots of great knowledgeable people on here that have been dealing with melanoma a long time and a lot of great support.
All the best,
-
- June 28, 2016 at 2:26 pm
Im Sorry you are going through this. There are treatment options for you. Going to Moffit is perfect. They are wonderful and will lead you in the right direction. They will work with your local Onc on discussions and treatments. Make sure your Onc specializes in Melanoma.
All my best
R
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- June 28, 2016 at 2:26 pm
Im Sorry you are going through this. There are treatment options for you. Going to Moffit is perfect. They are wonderful and will lead you in the right direction. They will work with your local Onc on discussions and treatments. Make sure your Onc specializes in Melanoma.
All my best
R
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- June 28, 2016 at 2:26 pm
Im Sorry you are going through this. There are treatment options for you. Going to Moffit is perfect. They are wonderful and will lead you in the right direction. They will work with your local Onc on discussions and treatments. Make sure your Onc specializes in Melanoma.
All my best
R
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Tagged: cutaneous melanoma
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