› Forums › General Melanoma Community › Recently diagnosed and looking for guidance, not to mention prayers, support, etc.
- This topic has 30 replies, 10 voices, and was last updated 13 years, 6 months ago by
lhaley.
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- July 19, 2011 at 3:38 am
Recently diagnosed last month when lump in left groin surfaced. Opted for full groin lymph dissection. PET/CT did not show evidence of disease has spread though area in muscle of left thigh showed concern. Area of left muscle was removed during dissection and surgeon is unable to tell me if area was a prior node or disease spread so on the side of caution this moves me from Stage III to Stage IV in their opinion. Treatment has not been determined as yet – local area is not very aggressive with this type of cancer.
Recently diagnosed last month when lump in left groin surfaced. Opted for full groin lymph dissection. PET/CT did not show evidence of disease has spread though area in muscle of left thigh showed concern. Area of left muscle was removed during dissection and surgeon is unable to tell me if area was a prior node or disease spread so on the side of caution this moves me from Stage III to Stage IV in their opinion. Treatment has not been determined as yet – local area is not very aggressive with this type of cancer. I have appointments at Johns Hopkins and Sloan Kettering in the next few weeks. Looking for any suggesstions and/or similar situations and treatments you may have considered. Need to 'flip the switch' to positive thoughts as I am still consumed with fear, the unknown and not being here from my children who are so very young. Thank you for reading and thank you in advance to those that respond – God Bless.
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- July 19, 2011 at 6:01 am
Welcome to our forum. There are many great people here who will assist you with any
questions that you may have. They will also pray for you if you request this.I strongly encourage you to fill in some details on your profile page, as this will help
us to help you better.Best wishes
Frank from Australia
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- July 19, 2011 at 2:16 pm
Too much of a coincidence!! I just read your profile now that it's up. I'm from Smyrna De!! I taught there for 28 years. We moved from there about 6 years ago. My husband worked at Johnson Control. We have 2 other people on this site from Delaware. One is Lear who also goes to Christiana (she posts as Vivian) and the other is TraceyLee.
You are close to Univ of Penn. Check out Dr Lynn Shutler (might be misspelling her name).
Linda
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- July 20, 2011 at 1:08 am
Name is spelled Schuchter, and she is my oncologist. Really. really smart, and really knows melanoma. Pushes clinical trials very hard, but not sure that's a bad thing…especially since she has access to all kinds of trials, etc.
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- July 20, 2011 at 1:08 am
Name is spelled Schuchter, and she is my oncologist. Really. really smart, and really knows melanoma. Pushes clinical trials very hard, but not sure that's a bad thing…especially since she has access to all kinds of trials, etc.
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- July 20, 2011 at 1:08 am
Name is spelled Schuchter, and she is my oncologist. Really. really smart, and really knows melanoma. Pushes clinical trials very hard, but not sure that's a bad thing…especially since she has access to all kinds of trials, etc.
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- July 20, 2011 at 1:08 am
Name is spelled Schuchter, and she is my oncologist. Really. really smart, and really knows melanoma. Pushes clinical trials very hard, but not sure that's a bad thing…especially since she has access to all kinds of trials, etc.
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- July 19, 2011 at 2:16 pm
Too much of a coincidence!! I just read your profile now that it's up. I'm from Smyrna De!! I taught there for 28 years. We moved from there about 6 years ago. My husband worked at Johnson Control. We have 2 other people on this site from Delaware. One is Lear who also goes to Christiana (she posts as Vivian) and the other is TraceyLee.
You are close to Univ of Penn. Check out Dr Lynn Shutler (might be misspelling her name).
Linda
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- July 19, 2011 at 6:01 am
Welcome to our forum. There are many great people here who will assist you with any
questions that you may have. They will also pray for you if you request this.I strongly encourage you to fill in some details on your profile page, as this will help
us to help you better.Best wishes
Frank from Australia
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- July 19, 2011 at 12:28 pm
I'm sorry you've had to join us. There are many of us stage IV long term survivors, many of them just don't come to the board that often and being summer they might be off vacationing. I hit my 5 year mark almost 2 weeks ago! Had dinner the other night with a 3 year survivor. Last year I met rick from NC who is about a 14 year survivor who has been cancer free the entire time since IL2.
You will find yourself in a unique position if I understand you correctly. Stage IV and NED. I've been in and out of that position. You won't have many options because there is no disease to use as a marker so little options. I do know of 2 trials for stage IV NED. 1 is if you have the 0201+ protein marker. Ask your Dr to do the HLA blood test. That trial is being offered at Moffitt in Orlando. Maybe other places also but not many. It's a vacine along with another drug (slipped my mind but is similar to but different than ipi). The other trial is opening up right now around the country so you might be able to find it closer to home either now or in Sept. It's Interfuron vs Yervoy (ipi). The interfuron is for the entire year and the Yervoy is a different dosage then what has been FDA approved. It's 10 mg (instead of 3) every 3 weeks for 12 weeks. Then One infusion every 3 months for the rest of the year.
My oncologist and I discussed the later trial (not eligible for the 1st) but I would have to travel 2 hours and can't do that with the interfuron being every day for the first month. If your closer it might be something for you to consider. I also wasn't thrilled with the thought of doing interfuron for a year after I've avoided it for the past 5 years, but that's a personal decision..
Let us know how the appointments go!
Linda
Stage IV since 06 NED for 6 weeks, currently doing radiation
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- July 19, 2011 at 1:31 pm
Linda, thank you so much for your reply and the information you have provided. I was aware of the trial involving Interfuron and Yervoy as this will be opening to my area shortly. My oncologist is encouraging me to explore options around the BRAF gene as I have been confirmed positive. He would like me involved in a clinical trial around this gene but we are also finding that it will be difficult with NED at this time as many of the trials what something to "measure", as you already noted.
I also found that Bethesda, MD noted a clinical trial that is currently open offering the vacine as well. I have reached out for more information around this trial in hopes to discuss during my next appointment.
Thank you for your reply, Linda – it was very much appreciated.
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- July 19, 2011 at 1:31 pm
Linda, thank you so much for your reply and the information you have provided. I was aware of the trial involving Interfuron and Yervoy as this will be opening to my area shortly. My oncologist is encouraging me to explore options around the BRAF gene as I have been confirmed positive. He would like me involved in a clinical trial around this gene but we are also finding that it will be difficult with NED at this time as many of the trials what something to "measure", as you already noted.
I also found that Bethesda, MD noted a clinical trial that is currently open offering the vacine as well. I have reached out for more information around this trial in hopes to discuss during my next appointment.
Thank you for your reply, Linda – it was very much appreciated.
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- July 20, 2011 at 8:13 am
Linda, Rick had his iL-2 in 1991. (Not sure what month.) So this year makes it 20 ith iL-2 being his only stage IV treatment. Isn't the longivity of that 5% complete responce rate great?
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- July 20, 2011 at 11:03 am
I thought it was longer than 14 years but was afraid to say. You know, some of us have to be in that small percentage! My Dr broke it down for me that there are different percentages depending on where the metastices are. So some areas actually have a much better response.
Linda
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- July 20, 2011 at 11:03 am
I thought it was longer than 14 years but was afraid to say. You know, some of us have to be in that small percentage! My Dr broke it down for me that there are different percentages depending on where the metastices are. So some areas actually have a much better response.
Linda
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- July 20, 2011 at 8:13 am
Linda, Rick had his iL-2 in 1991. (Not sure what month.) So this year makes it 20 ith iL-2 being his only stage IV treatment. Isn't the longivity of that 5% complete responce rate great?
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- July 19, 2011 at 12:28 pm
I'm sorry you've had to join us. There are many of us stage IV long term survivors, many of them just don't come to the board that often and being summer they might be off vacationing. I hit my 5 year mark almost 2 weeks ago! Had dinner the other night with a 3 year survivor. Last year I met rick from NC who is about a 14 year survivor who has been cancer free the entire time since IL2.
You will find yourself in a unique position if I understand you correctly. Stage IV and NED. I've been in and out of that position. You won't have many options because there is no disease to use as a marker so little options. I do know of 2 trials for stage IV NED. 1 is if you have the 0201+ protein marker. Ask your Dr to do the HLA blood test. That trial is being offered at Moffitt in Orlando. Maybe other places also but not many. It's a vacine along with another drug (slipped my mind but is similar to but different than ipi). The other trial is opening up right now around the country so you might be able to find it closer to home either now or in Sept. It's Interfuron vs Yervoy (ipi). The interfuron is for the entire year and the Yervoy is a different dosage then what has been FDA approved. It's 10 mg (instead of 3) every 3 weeks for 12 weeks. Then One infusion every 3 months for the rest of the year.
My oncologist and I discussed the later trial (not eligible for the 1st) but I would have to travel 2 hours and can't do that with the interfuron being every day for the first month. If your closer it might be something for you to consider. I also wasn't thrilled with the thought of doing interfuron for a year after I've avoided it for the past 5 years, but that's a personal decision..
Let us know how the appointments go!
Linda
Stage IV since 06 NED for 6 weeks, currently doing radiation
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- July 19, 2011 at 1:28 pm
Hi B,
I'm still stage 3b, so while I can't offer advice on stage 4 except listen to Linda and others, I want you to know I'll be holding you and your family in prayer. God bless.
Lord, in Your healing mercy, please look on Your daughter and her children with favor and guide her on this journey. Open doors that will help and close all that get in Your way. Thank You God. Amen and Amen.
Grace and peace,
Carol
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- July 19, 2011 at 1:28 pm
Hi B,
I'm still stage 3b, so while I can't offer advice on stage 4 except listen to Linda and others, I want you to know I'll be holding you and your family in prayer. God bless.
Lord, in Your healing mercy, please look on Your daughter and her children with favor and guide her on this journey. Open doors that will help and close all that get in Your way. Thank You God. Amen and Amen.
Grace and peace,
Carol
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- July 19, 2011 at 2:41 pm
Sorry to hear about your recent diagnosis… and to have to 'meet' you this way. I am currently seen at sloan (although haven't done any treatments even though confirmed stage IV in March. June scans showed NED!). but you're on the right track with seeing a Melanoma specialist if you don't feel that your local doctor is up to speed enough on new treatments and trials out there.
Thoughts and prayers with you!
Erin
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- July 19, 2011 at 2:41 pm
Sorry to hear about your recent diagnosis… and to have to 'meet' you this way. I am currently seen at sloan (although haven't done any treatments even though confirmed stage IV in March. June scans showed NED!). but you're on the right track with seeing a Melanoma specialist if you don't feel that your local doctor is up to speed enough on new treatments and trials out there.
Thoughts and prayers with you!
Erin
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- July 19, 2011 at 3:39 pm
So sorry you had to join us…I am also a nearby melanoma warrior–Chincoteague, VA. I was living in Roanoke, VA when I was diagnosed as stage III in January of this year. Because I was only offered Interferon, I quickly decided I needed to be seen by someone who has more experience with melanoma. I have had a GREAT experience at Sloan Kettering. I cannot rave about them enough. I see Dr. Mark Dickson at Sloan. Erin and I can both tell you numerous stories about how encouraging Dr. Dickson continues to be. He's a doctor who insists on doing your worrying FOR you. As he says, that's why he gets paid. 😉
Best wishes to you. Not sure if you have a Facebook page or not, but you will find a lot of support there.
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- July 19, 2011 at 3:39 pm
So sorry you had to join us…I am also a nearby melanoma warrior–Chincoteague, VA. I was living in Roanoke, VA when I was diagnosed as stage III in January of this year. Because I was only offered Interferon, I quickly decided I needed to be seen by someone who has more experience with melanoma. I have had a GREAT experience at Sloan Kettering. I cannot rave about them enough. I see Dr. Mark Dickson at Sloan. Erin and I can both tell you numerous stories about how encouraging Dr. Dickson continues to be. He's a doctor who insists on doing your worrying FOR you. As he says, that's why he gets paid. 😉
Best wishes to you. Not sure if you have a Facebook page or not, but you will find a lot of support there.
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- July 20, 2011 at 12:18 am
Hello — I am a member of a non-profit group in Delaware who raises funds for melanoma research. We are Miles for Melanoma of Delaware, made up of both survivors and caregivers. Website : http://www.miles4melanomade.org. We are here for support, to increase awareness of melanoma and skin cancer, and we give all proceeds to MRF. Our signature event is a 5K walk/run at the Riverfront in Wilmington on Sept. 18. Teams are forming now. Last year we wrote a $65,000 check to MRF. Our director lives in Middletown. Please reach out if you need us.
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- July 20, 2011 at 12:18 am
Hello — I am a member of a non-profit group in Delaware who raises funds for melanoma research. We are Miles for Melanoma of Delaware, made up of both survivors and caregivers. Website : http://www.miles4melanomade.org. We are here for support, to increase awareness of melanoma and skin cancer, and we give all proceeds to MRF. Our signature event is a 5K walk/run at the Riverfront in Wilmington on Sept. 18. Teams are forming now. Last year we wrote a $65,000 check to MRF. Our director lives in Middletown. Please reach out if you need us.
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