› Forums › General Melanoma Community › Stage 4 liver tumours and 16 sub q, advice on treatments
- This topic has 36 replies, 7 voices, and was last updated 9 years, 11 months ago by
liberty04281.
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- June 19, 2015 at 4:52 am
Hi everyone
my name is Kelly I'm 29 from highlands in Scotland uk.
im new to this site although not completely new to melanoma but a bit clueless! I had primary removed from my arm in 2013 stage 2a, nodule appeared 2014 beside original site removed and still 2a clear ct scan, may2015 routines an showed 5 small tumours to my liver no lyphnodes involved braff wild,
i started ippy on the 1/6/15 about a week after I started getting horrific bruising with lumps, I have spoke to serval people about this all but one seems to think it is a side affect, my surgeon whom I spoke with last night thinks they are little tumours called subq.
im really just asking all you super warriors if you'd have had subq pop due to ippy or do you think they would have popped up regardless? Also I was wondering what everyone's thoughts were on all the new clinical trials and what has been most successful?
Much love
kelly xx
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- June 19, 2015 at 11:00 am
Dear Kelly,
I have never heard of ipi "causing" tumors. All immunotherapies, we've learned, can cause inflammation that looks like enlargement on scans or on palpation. Biopsy of one of the sub q nodules could answer that question. Given the time of your start, I assume you completed all doses of ipi? Did you have scans since the start? If so, how did the liver mets respond? If no scan hs been done, it would probably be wise to get one. It is possible you either did not respond to ipi…unfortunately not everyone does. Or you may have progressed after a response. You should qualify for either anti-PD1 product (pembro/keytruda or nivo/opdivo). They have similar side effect profiles (similar to but less than ipi) ans response rates (better than ipi). The trial with the best response rates is an ipi and nivo combo. I'm not sure you could enter since you've already had ipi….but it never hurts to ask.
Given your sub q mets (if that is what they are) you may be a very good cndidate for a large number of trials with intralesional therapy….
Hope that helps as a starting place. I wish you well. Celeste
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- June 19, 2015 at 1:52 pm
Thank you so much for your reply sorry I should have put I have only done one round of Ipilimumab I get my next round next Thursday iv had nearly no side affect only tiredness. I know it's very early to start assuming ippy has caused anything it is just so bizarre that they have come up one week after treatment all 16 of them, I am a little clueless still as I'm just learning.
Kelly xx
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- June 19, 2015 at 5:31 pm
Should have realized that! Well, I think the increased inflammation before eradication may well be what you are dealing with….much like it seems Gene experienced and is noted below. Sounds like you may still gain a very good response to ipi! And….now you know you have options if you don't. I wish you well. Celeste
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- June 19, 2015 at 5:31 pm
Should have realized that! Well, I think the increased inflammation before eradication may well be what you are dealing with….much like it seems Gene experienced and is noted below. Sounds like you may still gain a very good response to ipi! And….now you know you have options if you don't. I wish you well. Celeste
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- June 19, 2015 at 5:31 pm
Should have realized that! Well, I think the increased inflammation before eradication may well be what you are dealing with….much like it seems Gene experienced and is noted below. Sounds like you may still gain a very good response to ipi! And….now you know you have options if you don't. I wish you well. Celeste
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- June 19, 2015 at 1:52 pm
Thank you so much for your reply sorry I should have put I have only done one round of Ipilimumab I get my next round next Thursday iv had nearly no side affect only tiredness. I know it's very early to start assuming ippy has caused anything it is just so bizarre that they have come up one week after treatment all 16 of them, I am a little clueless still as I'm just learning.
Kelly xx
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- June 19, 2015 at 1:52 pm
Thank you so much for your reply sorry I should have put I have only done one round of Ipilimumab I get my next round next Thursday iv had nearly no side affect only tiredness. I know it's very early to start assuming ippy has caused anything it is just so bizarre that they have come up one week after treatment all 16 of them, I am a little clueless still as I'm just learning.
Kelly xx
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- June 19, 2015 at 11:00 am
Dear Kelly,
I have never heard of ipi "causing" tumors. All immunotherapies, we've learned, can cause inflammation that looks like enlargement on scans or on palpation. Biopsy of one of the sub q nodules could answer that question. Given the time of your start, I assume you completed all doses of ipi? Did you have scans since the start? If so, how did the liver mets respond? If no scan hs been done, it would probably be wise to get one. It is possible you either did not respond to ipi…unfortunately not everyone does. Or you may have progressed after a response. You should qualify for either anti-PD1 product (pembro/keytruda or nivo/opdivo). They have similar side effect profiles (similar to but less than ipi) ans response rates (better than ipi). The trial with the best response rates is an ipi and nivo combo. I'm not sure you could enter since you've already had ipi….but it never hurts to ask.
Given your sub q mets (if that is what they are) you may be a very good cndidate for a large number of trials with intralesional therapy….
Hope that helps as a starting place. I wish you well. Celeste
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- June 19, 2015 at 11:00 am
Dear Kelly,
I have never heard of ipi "causing" tumors. All immunotherapies, we've learned, can cause inflammation that looks like enlargement on scans or on palpation. Biopsy of one of the sub q nodules could answer that question. Given the time of your start, I assume you completed all doses of ipi? Did you have scans since the start? If so, how did the liver mets respond? If no scan hs been done, it would probably be wise to get one. It is possible you either did not respond to ipi…unfortunately not everyone does. Or you may have progressed after a response. You should qualify for either anti-PD1 product (pembro/keytruda or nivo/opdivo). They have similar side effect profiles (similar to but less than ipi) ans response rates (better than ipi). The trial with the best response rates is an ipi and nivo combo. I'm not sure you could enter since you've already had ipi….but it never hurts to ask.
Given your sub q mets (if that is what they are) you may be a very good cndidate for a large number of trials with intralesional therapy….
Hope that helps as a starting place. I wish you well. Celeste
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- June 19, 2015 at 2:01 pm
Hi Kelly,
So sorry you are going through this.
Celeste, I could be wrong, but I think Kelly was saying she started the Ipi on June 1st…not January 6th (because I think they change the order of month and day in the UK). I'm guessing that because she mentioned that her May 2015 scans showed the liver tumors. So I think Kelly has only been on the Ipi less than a month.
Kelly, I personally am on Keytruda (Pembro) and have been on that clinical trial for over 2.5 years. I started with my first 2.0mm melanoma when I was 26 years old in 2000 (on my upper right arm). I had a few more smaller melanomas, and then I progressed to stage 4 in 2012. Mine had spread through many lymph nodes and to my liver.
Keytruda has worked for me and shrank everything down with very few side effects. So I've been quite healthy and lucky to be feeling great throughout all of this.
All my best, Laurie
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- June 19, 2015 at 2:01 pm
Hi Kelly,
So sorry you are going through this.
Celeste, I could be wrong, but I think Kelly was saying she started the Ipi on June 1st…not January 6th (because I think they change the order of month and day in the UK). I'm guessing that because she mentioned that her May 2015 scans showed the liver tumors. So I think Kelly has only been on the Ipi less than a month.
Kelly, I personally am on Keytruda (Pembro) and have been on that clinical trial for over 2.5 years. I started with my first 2.0mm melanoma when I was 26 years old in 2000 (on my upper right arm). I had a few more smaller melanomas, and then I progressed to stage 4 in 2012. Mine had spread through many lymph nodes and to my liver.
Keytruda has worked for me and shrank everything down with very few side effects. So I've been quite healthy and lucky to be feeling great throughout all of this.
All my best, Laurie
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- June 19, 2015 at 2:01 pm
Hi Kelly,
So sorry you are going through this.
Celeste, I could be wrong, but I think Kelly was saying she started the Ipi on June 1st…not January 6th (because I think they change the order of month and day in the UK). I'm guessing that because she mentioned that her May 2015 scans showed the liver tumors. So I think Kelly has only been on the Ipi less than a month.
Kelly, I personally am on Keytruda (Pembro) and have been on that clinical trial for over 2.5 years. I started with my first 2.0mm melanoma when I was 26 years old in 2000 (on my upper right arm). I had a few more smaller melanomas, and then I progressed to stage 4 in 2012. Mine had spread through many lymph nodes and to my liver.
Keytruda has worked for me and shrank everything down with very few side effects. So I've been quite healthy and lucky to be feeling great throughout all of this.
All my best, Laurie
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- June 19, 2015 at 3:34 pm
Hello Kelly,
My husband had 4 sug q's that came up the week before he was starting his Ipi back in March 2011. Some were very large and purple like being full of blood and he actually bumped one with his comb the day before starting Ipi and it bled quite a bit. By the third dose of Ipi we were watching the sub q's disappear. If you would like to read more about his travels with melanoma and Ipi you can check out his profile.
Judy (loving wife of Gene Stage IV and now NED for over 2 1/2 years.)
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- June 19, 2015 at 4:28 pm
Wow this is amazing. My oncologist who is a penile specialist is a bit of a pessimist as he told me with no treatment or if the treatment didn't work Id only have 6/9 months to live, my friend who is a nurse said he jist wasn't sugar coating anything, I have changed my oncologist to a professor in the Bryson who is not a melanoma specialist but he specialises in immunotherapy it is hard to find a meaning specialist in Scotland.
Xx
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- June 19, 2015 at 7:03 pm
Hi Kelly – I just wanted you to know that I had a recurrence in January 2014 and have not yet started treatment and I'm still here. I wouldn't advise anyone to delay treatment as this disease can move fast and my mets are in my lung, not liver. I made more of a quality of life decision and am somewhat surprised to still be here. But I thought you should know that death-in-six-to-nine-months does not apply to everyone.
Good luck
Maggie
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- June 19, 2015 at 7:03 pm
Hi Kelly – I just wanted you to know that I had a recurrence in January 2014 and have not yet started treatment and I'm still here. I wouldn't advise anyone to delay treatment as this disease can move fast and my mets are in my lung, not liver. I made more of a quality of life decision and am somewhat surprised to still be here. But I thought you should know that death-in-six-to-nine-months does not apply to everyone.
Good luck
Maggie
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- June 19, 2015 at 7:03 pm
Hi Kelly – I just wanted you to know that I had a recurrence in January 2014 and have not yet started treatment and I'm still here. I wouldn't advise anyone to delay treatment as this disease can move fast and my mets are in my lung, not liver. I made more of a quality of life decision and am somewhat surprised to still be here. But I thought you should know that death-in-six-to-nine-months does not apply to everyone.
Good luck
Maggie
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- June 19, 2015 at 4:28 pm
Wow this is amazing. My oncologist who is a penile specialist is a bit of a pessimist as he told me with no treatment or if the treatment didn't work Id only have 6/9 months to live, my friend who is a nurse said he jist wasn't sugar coating anything, I have changed my oncologist to a professor in the Bryson who is not a melanoma specialist but he specialises in immunotherapy it is hard to find a meaning specialist in Scotland.
Xx
-
- June 19, 2015 at 4:28 pm
Wow this is amazing. My oncologist who is a penile specialist is a bit of a pessimist as he told me with no treatment or if the treatment didn't work Id only have 6/9 months to live, my friend who is a nurse said he jist wasn't sugar coating anything, I have changed my oncologist to a professor in the Bryson who is not a melanoma specialist but he specialises in immunotherapy it is hard to find a meaning specialist in Scotland.
Xx
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- June 19, 2015 at 3:34 pm
Hello Kelly,
My husband had 4 sug q's that came up the week before he was starting his Ipi back in March 2011. Some were very large and purple like being full of blood and he actually bumped one with his comb the day before starting Ipi and it bled quite a bit. By the third dose of Ipi we were watching the sub q's disappear. If you would like to read more about his travels with melanoma and Ipi you can check out his profile.
Judy (loving wife of Gene Stage IV and now NED for over 2 1/2 years.)
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- June 19, 2015 at 3:34 pm
Hello Kelly,
My husband had 4 sug q's that came up the week before he was starting his Ipi back in March 2011. Some were very large and purple like being full of blood and he actually bumped one with his comb the day before starting Ipi and it bled quite a bit. By the third dose of Ipi we were watching the sub q's disappear. If you would like to read more about his travels with melanoma and Ipi you can check out his profile.
Judy (loving wife of Gene Stage IV and now NED for over 2 1/2 years.)
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- June 19, 2015 at 5:33 pm
Hi Kelly, could I give you some ideas of where to look for knowledge about Melanoma. For the most current research that has been reported, ASCO 2015, which was held in Chicago a few weeks ago is a good place to start. Celeste ( Bubbles) who wrote to you has many of the links on her blog. ASCO brings the best and the brightest in to report on studies about cancer from all over the world. Immunotherapy treatments using Ipi or Pd-1 drugs have been leading the way for the last couple of years. Combination therapy has shown the best results, as far as % go and durability ( how long the treatment last). Some of the big names in the Melanoma field are Dr. Omid Hamid of "The Angeles Clinic" . Dr. Jedd Wolchok in New York, Dr. Pam Sharma at M.D. Anderson cancer center. Dr.Jim Allison also at M.D. Anderson in Texas. Dr. Jeffrey Weber, Dr.Antoni Ribas at UCLA. Dr.Mario Sznol. Many of these doctors speak at conferences about Melanoma research. I am glad that you are no longer getting advice from the Dr. that told you 6 to 9 months. I just passed my 2 year mark for brain and lung mets, Immunotherapy has changed the game and the stats. Find a Melanoma specialist, it really is important. Wishing you the best and don't be shy to ask questions!!! Ed
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- June 19, 2015 at 5:33 pm
Hi Kelly, could I give you some ideas of where to look for knowledge about Melanoma. For the most current research that has been reported, ASCO 2015, which was held in Chicago a few weeks ago is a good place to start. Celeste ( Bubbles) who wrote to you has many of the links on her blog. ASCO brings the best and the brightest in to report on studies about cancer from all over the world. Immunotherapy treatments using Ipi or Pd-1 drugs have been leading the way for the last couple of years. Combination therapy has shown the best results, as far as % go and durability ( how long the treatment last). Some of the big names in the Melanoma field are Dr. Omid Hamid of "The Angeles Clinic" . Dr. Jedd Wolchok in New York, Dr. Pam Sharma at M.D. Anderson cancer center. Dr.Jim Allison also at M.D. Anderson in Texas. Dr. Jeffrey Weber, Dr.Antoni Ribas at UCLA. Dr.Mario Sznol. Many of these doctors speak at conferences about Melanoma research. I am glad that you are no longer getting advice from the Dr. that told you 6 to 9 months. I just passed my 2 year mark for brain and lung mets, Immunotherapy has changed the game and the stats. Find a Melanoma specialist, it really is important. Wishing you the best and don't be shy to ask questions!!! Ed
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- June 19, 2015 at 5:33 pm
Hi Kelly, could I give you some ideas of where to look for knowledge about Melanoma. For the most current research that has been reported, ASCO 2015, which was held in Chicago a few weeks ago is a good place to start. Celeste ( Bubbles) who wrote to you has many of the links on her blog. ASCO brings the best and the brightest in to report on studies about cancer from all over the world. Immunotherapy treatments using Ipi or Pd-1 drugs have been leading the way for the last couple of years. Combination therapy has shown the best results, as far as % go and durability ( how long the treatment last). Some of the big names in the Melanoma field are Dr. Omid Hamid of "The Angeles Clinic" . Dr. Jedd Wolchok in New York, Dr. Pam Sharma at M.D. Anderson cancer center. Dr.Jim Allison also at M.D. Anderson in Texas. Dr. Jeffrey Weber, Dr.Antoni Ribas at UCLA. Dr.Mario Sznol. Many of these doctors speak at conferences about Melanoma research. I am glad that you are no longer getting advice from the Dr. that told you 6 to 9 months. I just passed my 2 year mark for brain and lung mets, Immunotherapy has changed the game and the stats. Find a Melanoma specialist, it really is important. Wishing you the best and don't be shy to ask questions!!! Ed
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