› Forums › General Melanoma Community › Stage IV Roll Call
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_Paul_.
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- February 7, 2016 at 10:28 pm
My brother was just diagnosed Stage IV melanoma and is meeting with an oncologist Friday. I thought he might appreciate seeing a roll call. Please let us know when you were diagnosed at stage IV and how you're doing now if you don't mind.
I was Stage IV July 2012 but misdiagnosed until my recurrence January 2014. Still have active mets but also still here and feeling good. Anyone else?
Cheers,
Maggie
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- February 8, 2016 at 1:35 am
After being stage 1 in August 2013, I found a lump in my groin in July 2014. Because I was 20 weeks pregnant at the time, I couldn't have a PET or CT scan. However, in December 2014 I found out I had mets in my liver and several throughout my body (left buttocks, right chest, right shoulder, lower spine). After completing traditional chemotherapy prescribed by Mayo Clinic, all of my tumors, except the one on my spine, grew. I changed care to MD Anderson in February 2015 and went on the (then trial) ipi/nivo combo. I made it 3 rounds and saw 95% tumor reduction. I had one singular dose of ipi and then went on Opdivo. My scans in November and again this January show I'm currently NED. I'll continue with treatment until June 2017….if all keeps going well.
🙂 Ashley
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- February 8, 2016 at 1:35 am
After being stage 1 in August 2013, I found a lump in my groin in July 2014. Because I was 20 weeks pregnant at the time, I couldn't have a PET or CT scan. However, in December 2014 I found out I had mets in my liver and several throughout my body (left buttocks, right chest, right shoulder, lower spine). After completing traditional chemotherapy prescribed by Mayo Clinic, all of my tumors, except the one on my spine, grew. I changed care to MD Anderson in February 2015 and went on the (then trial) ipi/nivo combo. I made it 3 rounds and saw 95% tumor reduction. I had one singular dose of ipi and then went on Opdivo. My scans in November and again this January show I'm currently NED. I'll continue with treatment until June 2017….if all keeps going well.
🙂 Ashley
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- February 8, 2016 at 1:35 am
After being stage 1 in August 2013, I found a lump in my groin in July 2014. Because I was 20 weeks pregnant at the time, I couldn't have a PET or CT scan. However, in December 2014 I found out I had mets in my liver and several throughout my body (left buttocks, right chest, right shoulder, lower spine). After completing traditional chemotherapy prescribed by Mayo Clinic, all of my tumors, except the one on my spine, grew. I changed care to MD Anderson in February 2015 and went on the (then trial) ipi/nivo combo. I made it 3 rounds and saw 95% tumor reduction. I had one singular dose of ipi and then went on Opdivo. My scans in November and again this January show I'm currently NED. I'll continue with treatment until June 2017….if all keeps going well.
🙂 Ashley
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- February 8, 2016 at 12:04 pm
Diagnosed stage IV in Aug 2005. Numerous surgeries, radiation, IL2, and 2 trials including IPI 10mg which all led to NED in 2009. Easy? No. Side effects? Yes, but treatable until they went away. Have not required any treatments since 2009. Of all meds for side effects since 2010. Hang in there!
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- February 8, 2016 at 12:04 pm
Diagnosed stage IV in Aug 2005. Numerous surgeries, radiation, IL2, and 2 trials including IPI 10mg which all led to NED in 2009. Easy? No. Side effects? Yes, but treatable until they went away. Have not required any treatments since 2009. Of all meds for side effects since 2010. Hang in there!
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- February 8, 2016 at 12:04 pm
Diagnosed stage IV in Aug 2005. Numerous surgeries, radiation, IL2, and 2 trials including IPI 10mg which all led to NED in 2009. Easy? No. Side effects? Yes, but treatable until they went away. Have not required any treatments since 2009. Of all meds for side effects since 2010. Hang in there!
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- February 8, 2016 at 1:39 pm
Good Luck
Stage II in May of 2014
Stage III in July of 2014Stage IV in December of 2014 (PET scan)
Did a course of ipi (4 doses, 3 weeks apart). Scan showed no new mets, be enlargening of present mets.
8 doses of pembro produced stability with some "change" in shape and potentially enlargening. Bone Scans/CTs
4 additional does of Pembro showed me NED based on PET.
Getting Pembro dose14 this week.
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- February 8, 2016 at 1:39 pm
Good Luck
Stage II in May of 2014
Stage III in July of 2014Stage IV in December of 2014 (PET scan)
Did a course of ipi (4 doses, 3 weeks apart). Scan showed no new mets, be enlargening of present mets.
8 doses of pembro produced stability with some "change" in shape and potentially enlargening. Bone Scans/CTs
4 additional does of Pembro showed me NED based on PET.
Getting Pembro dose14 this week.
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- February 8, 2016 at 1:39 pm
Good Luck
Stage II in May of 2014
Stage III in July of 2014Stage IV in December of 2014 (PET scan)
Did a course of ipi (4 doses, 3 weeks apart). Scan showed no new mets, be enlargening of present mets.
8 doses of pembro produced stability with some "change" in shape and potentially enlargening. Bone Scans/CTs
4 additional does of Pembro showed me NED based on PET.
Getting Pembro dose14 this week.
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- February 8, 2016 at 4:43 pm
my husband stage IV diagnosed in August 2015, started Opdivo Nov 2015, latest scan results in Jan show no disease. 7 more treatments of Opdivo to go and scan again in April. Opdivo side effects can be brutal but we're clear for now. Best of luck and prayers to your brother.
R
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- February 8, 2016 at 4:43 pm
my husband stage IV diagnosed in August 2015, started Opdivo Nov 2015, latest scan results in Jan show no disease. 7 more treatments of Opdivo to go and scan again in April. Opdivo side effects can be brutal but we're clear for now. Best of luck and prayers to your brother.
R
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- February 8, 2016 at 4:43 pm
my husband stage IV diagnosed in August 2015, started Opdivo Nov 2015, latest scan results in Jan show no disease. 7 more treatments of Opdivo to go and scan again in April. Opdivo side effects can be brutal but we're clear for now. Best of luck and prayers to your brother.
R
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- February 8, 2016 at 5:33 pm
Thank all of you so much for responding! There are so many promising treatments available and I really wanted my brother to see that. So many NEDs too! You give us both hope that it may be possible for us too. I hope more continue to post on this thread. It is just so encouraging. You are wonderful people for sharing your stories. May NED become the "norm" for all of us!
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- February 8, 2016 at 5:33 pm
Thank all of you so much for responding! There are so many promising treatments available and I really wanted my brother to see that. So many NEDs too! You give us both hope that it may be possible for us too. I hope more continue to post on this thread. It is just so encouraging. You are wonderful people for sharing your stories. May NED become the "norm" for all of us!
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- February 8, 2016 at 5:33 pm
Thank all of you so much for responding! There are so many promising treatments available and I really wanted my brother to see that. So many NEDs too! You give us both hope that it may be possible for us too. I hope more continue to post on this thread. It is just so encouraging. You are wonderful people for sharing your stories. May NED become the "norm" for all of us!
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- February 8, 2016 at 10:09 pm
My dad was diagnosed in March of 2015 with a very high tumour burden and widely metastatic disease (brain, lungs, bowel, lymph nodes). He had multiple tumours larger than 8cm and was very sick at presentation (the story is available in my previous posts). He has been on Keytruda since the end of March of 2015 with about an 80% response and all remaining lesions continue to shrink. His quality of life is outstanding and you would never know that he has stage 4 melanoma.
-msitz
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- February 8, 2016 at 10:09 pm
My dad was diagnosed in March of 2015 with a very high tumour burden and widely metastatic disease (brain, lungs, bowel, lymph nodes). He had multiple tumours larger than 8cm and was very sick at presentation (the story is available in my previous posts). He has been on Keytruda since the end of March of 2015 with about an 80% response and all remaining lesions continue to shrink. His quality of life is outstanding and you would never know that he has stage 4 melanoma.
-msitz
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- February 8, 2016 at 10:09 pm
My dad was diagnosed in March of 2015 with a very high tumour burden and widely metastatic disease (brain, lungs, bowel, lymph nodes). He had multiple tumours larger than 8cm and was very sick at presentation (the story is available in my previous posts). He has been on Keytruda since the end of March of 2015 with about an 80% response and all remaining lesions continue to shrink. His quality of life is outstanding and you would never know that he has stage 4 melanoma.
-msitz
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- February 9, 2016 at 1:06 am
I was stage II in 2006 and had WLE and SNB, and then was NED for 8 years, until a recurrence was diagnosed in January 2015 and scans showing mets put me at Stage IV. I started the ipi/nivo trial in late February 2015, and could only tolerate one dose of the combination. Had a couple months off while I weened off prednisone, and then started just Opdivo (nivo) infusions. December 2015 scans showed NED, next scans in March! If all goes well, I'll remain NEDand finish treatments in March of 2017!
I am praying for you and your brother! Best of luck to you both!
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- February 9, 2016 at 1:06 am
I was stage II in 2006 and had WLE and SNB, and then was NED for 8 years, until a recurrence was diagnosed in January 2015 and scans showing mets put me at Stage IV. I started the ipi/nivo trial in late February 2015, and could only tolerate one dose of the combination. Had a couple months off while I weened off prednisone, and then started just Opdivo (nivo) infusions. December 2015 scans showed NED, next scans in March! If all goes well, I'll remain NEDand finish treatments in March of 2017!
I am praying for you and your brother! Best of luck to you both!
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- February 9, 2016 at 1:06 am
I was stage II in 2006 and had WLE and SNB, and then was NED for 8 years, until a recurrence was diagnosed in January 2015 and scans showing mets put me at Stage IV. I started the ipi/nivo trial in late February 2015, and could only tolerate one dose of the combination. Had a couple months off while I weened off prednisone, and then started just Opdivo (nivo) infusions. December 2015 scans showed NED, next scans in March! If all goes well, I'll remain NEDand finish treatments in March of 2017!
I am praying for you and your brother! Best of luck to you both!
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- February 10, 2016 at 5:24 pm
Stage 4 in Oct 2012 with mets to many nodes across my upper body and a mass on my Liver. Started Keytruda right away. Also changed many things in my life to be healthier. Now on Keytruda for about 60 doses and NED. I'm a very lucky girl.
Best of luck to you and your brother Maggie!!
Laurie
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- February 10, 2016 at 5:24 pm
Stage 4 in Oct 2012 with mets to many nodes across my upper body and a mass on my Liver. Started Keytruda right away. Also changed many things in my life to be healthier. Now on Keytruda for about 60 doses and NED. I'm a very lucky girl.
Best of luck to you and your brother Maggie!!
Laurie
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- February 10, 2016 at 5:24 pm
Stage 4 in Oct 2012 with mets to many nodes across my upper body and a mass on my Liver. Started Keytruda right away. Also changed many things in my life to be healthier. Now on Keytruda for about 60 doses and NED. I'm a very lucky girl.
Best of luck to you and your brother Maggie!!
Laurie
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- February 11, 2016 at 12:28 am
Diagnosed stage IV in September 2011. Brain MRIs have been stable since craniotomy #2 in June 2013. Will finish 2 1/2 year nivo trial in May. One lung met has been stable at 3-4mm for 18 months.
Have the occasional seizure (last one November 9). Out of work for a while (doctor's orders) due to fatugue. Hopefully I will slowly reduce keppra and return to work by the end of the year.
Overall very thankful. Tired but happy.
Brendan
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- February 11, 2016 at 12:28 am
Diagnosed stage IV in September 2011. Brain MRIs have been stable since craniotomy #2 in June 2013. Will finish 2 1/2 year nivo trial in May. One lung met has been stable at 3-4mm for 18 months.
Have the occasional seizure (last one November 9). Out of work for a while (doctor's orders) due to fatugue. Hopefully I will slowly reduce keppra and return to work by the end of the year.
Overall very thankful. Tired but happy.
Brendan
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- February 11, 2016 at 12:28 am
Diagnosed stage IV in September 2011. Brain MRIs have been stable since craniotomy #2 in June 2013. Will finish 2 1/2 year nivo trial in May. One lung met has been stable at 3-4mm for 18 months.
Have the occasional seizure (last one November 9). Out of work for a while (doctor's orders) due to fatugue. Hopefully I will slowly reduce keppra and return to work by the end of the year.
Overall very thankful. Tired but happy.
Brendan
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- February 11, 2016 at 1:29 pm
Maggie-
I am not Stage IV, (stage IIIB) in the process of trying to make decisons for my treatment plan………but just so da_n mad to read that your brother now too has to deal with this ….So I am simply sending good thoughts and hopes for treatments that work….Its bad enough that you have to deal with it, but now your brother too…
I lost my brother many years ago at the age of 36 to Lymphoma……it just stinks!!!!!!
Hoping for the best for your both….
Will be thinking about you both!
Best,
jenny
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- February 12, 2016 at 12:41 am
Hi Jenny – thanks so much for the good wishes. We'll take all we can get. So sorry about your own brother. 36 is so young!! My brother and I are now in this together and we plan to double-up on our respective doctor appointments (he's in an HMO and I'm PPO so we see different people – might as well learn as much as we can at each other's apps. Two for one deal!)
I admire how carefully you are weighing all your options, Jenny. Be careful of "analysis paralysis". Too much data and still no clear answer. Sometimes you just have to just trust your gut and jump in. I hope you find a path soon that you are comfortable with.
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- February 12, 2016 at 12:41 am
Hi Jenny – thanks so much for the good wishes. We'll take all we can get. So sorry about your own brother. 36 is so young!! My brother and I are now in this together and we plan to double-up on our respective doctor appointments (he's in an HMO and I'm PPO so we see different people – might as well learn as much as we can at each other's apps. Two for one deal!)
I admire how carefully you are weighing all your options, Jenny. Be careful of "analysis paralysis". Too much data and still no clear answer. Sometimes you just have to just trust your gut and jump in. I hope you find a path soon that you are comfortable with.
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- February 12, 2016 at 12:41 am
Hi Jenny – thanks so much for the good wishes. We'll take all we can get. So sorry about your own brother. 36 is so young!! My brother and I are now in this together and we plan to double-up on our respective doctor appointments (he's in an HMO and I'm PPO so we see different people – might as well learn as much as we can at each other's apps. Two for one deal!)
I admire how carefully you are weighing all your options, Jenny. Be careful of "analysis paralysis". Too much data and still no clear answer. Sometimes you just have to just trust your gut and jump in. I hope you find a path soon that you are comfortable with.
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- February 11, 2016 at 1:29 pm
Maggie-
I am not Stage IV, (stage IIIB) in the process of trying to make decisons for my treatment plan………but just so da_n mad to read that your brother now too has to deal with this ….So I am simply sending good thoughts and hopes for treatments that work….Its bad enough that you have to deal with it, but now your brother too…
I lost my brother many years ago at the age of 36 to Lymphoma……it just stinks!!!!!!
Hoping for the best for your both….
Will be thinking about you both!
Best,
jenny
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- February 11, 2016 at 1:29 pm
Maggie-
I am not Stage IV, (stage IIIB) in the process of trying to make decisons for my treatment plan………but just so da_n mad to read that your brother now too has to deal with this ….So I am simply sending good thoughts and hopes for treatments that work….Its bad enough that you have to deal with it, but now your brother too…
I lost my brother many years ago at the age of 36 to Lymphoma……it just stinks!!!!!!
Hoping for the best for your both….
Will be thinking about you both!
Best,
jenny
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- February 11, 2016 at 10:21 pm
Husband Stage IV Feb 2013. NED until November 2015. Started Keytruda in January. Scans in March to see if it's working. He feels great, asymptomatic since diagnosed in 2011, and so far no side effects from Keytruda.
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- February 11, 2016 at 10:21 pm
Husband Stage IV Feb 2013. NED until November 2015. Started Keytruda in January. Scans in March to see if it's working. He feels great, asymptomatic since diagnosed in 2011, and so far no side effects from Keytruda.
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- February 11, 2016 at 10:21 pm
Husband Stage IV Feb 2013. NED until November 2015. Started Keytruda in January. Scans in March to see if it's working. He feels great, asymptomatic since diagnosed in 2011, and so far no side effects from Keytruda.
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- February 12, 2016 at 12:50 am
I am overwhelmed by how many great stories you are all sharing! Every single one is so encouraging. Just the fact that you are all still here regardless of your current status is so impressive and powerful to those newly diagnosed at Stage IV. I thought for sure I was a goner in six months. So many of you have been Stage IV for so much longer than that. We may be entering the Golden Age for melanoma treatment. Maybe we'll even hear from more folks?
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- February 12, 2016 at 6:02 pm
Hi Maggie,
Sorry to hear about your brother. My husband has been Stage IV since 2008, disease free since 2009. He had lung mets, subqs and intestinal mets. He did IL-2, and multiple surgeries. Tell your brother to be strong and be agressive with this disease. Good luck. Rebecca
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- February 12, 2016 at 6:02 pm
Hi Maggie,
Sorry to hear about your brother. My husband has been Stage IV since 2008, disease free since 2009. He had lung mets, subqs and intestinal mets. He did IL-2, and multiple surgeries. Tell your brother to be strong and be agressive with this disease. Good luck. Rebecca
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- February 12, 2016 at 6:02 pm
Hi Maggie,
Sorry to hear about your brother. My husband has been Stage IV since 2008, disease free since 2009. He had lung mets, subqs and intestinal mets. He did IL-2, and multiple surgeries. Tell your brother to be strong and be agressive with this disease. Good luck. Rebecca
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- February 12, 2016 at 12:50 am
I am overwhelmed by how many great stories you are all sharing! Every single one is so encouraging. Just the fact that you are all still here regardless of your current status is so impressive and powerful to those newly diagnosed at Stage IV. I thought for sure I was a goner in six months. So many of you have been Stage IV for so much longer than that. We may be entering the Golden Age for melanoma treatment. Maybe we'll even hear from more folks?
-
- February 12, 2016 at 12:50 am
I am overwhelmed by how many great stories you are all sharing! Every single one is so encouraging. Just the fact that you are all still here regardless of your current status is so impressive and powerful to those newly diagnosed at Stage IV. I thought for sure I was a goner in six months. So many of you have been Stage IV for so much longer than that. We may be entering the Golden Age for melanoma treatment. Maybe we'll even hear from more folks?
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