› Forums › General Melanoma Community › Disconcerting news today
- This topic has 27 replies, 6 voices, and was last updated 10 years, 4 months ago by
mark1101.
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- January 17, 2014 at 10:18 pm
My primary Onc called today to report that the single small met on my right, posterior iliac which showed up on a scan done 4 Nov 2013 is now several small mets in my hip area and along my vertebral column all on bone. We wee hoping my Ipi treatments might shrink the first one into oblivion, but obviously Ipi didn't do its thing for me. So Monday its off to my #2 Onc (referred by #1) who is an advocate of HD IL-2 and has recently been running a trial on HD IL-2 in concert with BRAF meds. I am Braf positive. He also has a BRAF + MEK trial under way as well. Not sure what direction this will take, but guess it will have to be systemic treatment, was hoping for radiotactical treatment on my single spot…kind of rambling.
My questions are abut others with experience with Mel on bone and its progression for them. Also are there particular treatments I should key off given all mets are on bone?
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- January 18, 2014 at 2:29 am
Mark,
Sorry I don't have any knowledge of this type condition. Hopefully others will chime in soon. Just wanted to let you know how sorry I am about the news and I'll be praying for you. Best of luck with your upcoming decision. Sounds like you have some pretty good options.
Brian
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- January 18, 2014 at 2:29 am
Mark,
Sorry I don't have any knowledge of this type condition. Hopefully others will chime in soon. Just wanted to let you know how sorry I am about the news and I'll be praying for you. Best of luck with your upcoming decision. Sounds like you have some pretty good options.
Brian
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- January 18, 2014 at 2:29 am
Mark,
Sorry I don't have any knowledge of this type condition. Hopefully others will chime in soon. Just wanted to let you know how sorry I am about the news and I'll be praying for you. Best of luck with your upcoming decision. Sounds like you have some pretty good options.
Brian
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- January 18, 2014 at 7:28 pm
Sorry Mark,
I know this is not at all what you were hoping for. I am not a melanoma/bone expert, but am pretty well read on the data and don't know of anything more particular or different in the approach to that as opposed to other melanoma lesions other than perhaps a greater use of radiation like the others have said. I agree also that you have some options with maybe BRAF or the BRAF/MEK combo at least until anti-PD1 comes on the market and perhaps you could try that then if need be. There are also trials with antiPDL, the new ADC drug (I know they are still taking occasional patients in Nashville, though I don't know your location or all the trial requirements). Some places including Moffitt are doing trials with Rose Bengal (PV-10) but you must have a lesion superficial enough to inject and I'm not sure it sounds as though you do. One other ray of light if your onc does recommend radiation (and I'm not saying they should or shouldn't)…but if they do…there is more and more data showing the benefits of the ipi/radiation combo…even when the patient didn't respond so well to ipi in the first place. I recently posted some articles talking about that on my blog.
Wishing you my best. Hang in there. Celeste
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- January 18, 2014 at 7:28 pm
Sorry Mark,
I know this is not at all what you were hoping for. I am not a melanoma/bone expert, but am pretty well read on the data and don't know of anything more particular or different in the approach to that as opposed to other melanoma lesions other than perhaps a greater use of radiation like the others have said. I agree also that you have some options with maybe BRAF or the BRAF/MEK combo at least until anti-PD1 comes on the market and perhaps you could try that then if need be. There are also trials with antiPDL, the new ADC drug (I know they are still taking occasional patients in Nashville, though I don't know your location or all the trial requirements). Some places including Moffitt are doing trials with Rose Bengal (PV-10) but you must have a lesion superficial enough to inject and I'm not sure it sounds as though you do. One other ray of light if your onc does recommend radiation (and I'm not saying they should or shouldn't)…but if they do…there is more and more data showing the benefits of the ipi/radiation combo…even when the patient didn't respond so well to ipi in the first place. I recently posted some articles talking about that on my blog.
Wishing you my best. Hang in there. Celeste
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- January 18, 2014 at 7:28 pm
Sorry Mark,
I know this is not at all what you were hoping for. I am not a melanoma/bone expert, but am pretty well read on the data and don't know of anything more particular or different in the approach to that as opposed to other melanoma lesions other than perhaps a greater use of radiation like the others have said. I agree also that you have some options with maybe BRAF or the BRAF/MEK combo at least until anti-PD1 comes on the market and perhaps you could try that then if need be. There are also trials with antiPDL, the new ADC drug (I know they are still taking occasional patients in Nashville, though I don't know your location or all the trial requirements). Some places including Moffitt are doing trials with Rose Bengal (PV-10) but you must have a lesion superficial enough to inject and I'm not sure it sounds as though you do. One other ray of light if your onc does recommend radiation (and I'm not saying they should or shouldn't)…but if they do…there is more and more data showing the benefits of the ipi/radiation combo…even when the patient didn't respond so well to ipi in the first place. I recently posted some articles talking about that on my blog.
Wishing you my best. Hang in there. Celeste
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- January 19, 2014 at 3:56 am
I'm in the same situation. So far all my mel is in/on my bones. So far the only thing that worked some was radiation. It was targetted pallative that reduced that area 20%. 8 weeks of max zelboraf did nothing to shrink any mel. For that everything grew except the radiated area. I get my 4th/final ipi dose monday so won't know for quite awhile how it has done.
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- January 19, 2014 at 3:56 am
I'm in the same situation. So far all my mel is in/on my bones. So far the only thing that worked some was radiation. It was targetted pallative that reduced that area 20%. 8 weeks of max zelboraf did nothing to shrink any mel. For that everything grew except the radiated area. I get my 4th/final ipi dose monday so won't know for quite awhile how it has done.
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- January 19, 2014 at 3:56 am
I'm in the same situation. So far all my mel is in/on my bones. So far the only thing that worked some was radiation. It was targetted pallative that reduced that area 20%. 8 weeks of max zelboraf did nothing to shrink any mel. For that everything grew except the radiated area. I get my 4th/final ipi dose monday so won't know for quite awhile how it has done.
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- January 20, 2014 at 2:02 am
If you are in good shape, HD IL-2 is a valid treatment to try if one has a very experienced Oncologist and staff with its administration/side effects.. While only providing a positive response for around 20% of patients, it has provided what is being referred to as a CURE to about 5% of recipients. It is a tough, but do-able treatment with a quick recovery time from each treatment week. (I received 49 bags and was a partial responder for 20 months.) Others have bee free from Melanoma fro over 20 years from IL-2 administration. For some people Ipi has less short term side effects, for others,Ipi has long/longer lasting negative side effects. -
- January 20, 2014 at 2:02 am
If you are in good shape, HD IL-2 is a valid treatment to try if one has a very experienced Oncologist and staff with its administration/side effects.. While only providing a positive response for around 20% of patients, it has provided what is being referred to as a CURE to about 5% of recipients. It is a tough, but do-able treatment with a quick recovery time from each treatment week. (I received 49 bags and was a partial responder for 20 months.) Others have bee free from Melanoma fro over 20 years from IL-2 administration. For some people Ipi has less short term side effects, for others,Ipi has long/longer lasting negative side effects.-
- January 22, 2014 at 4:46 pm
Thanks, Jerry.
I am getting cardiac and pulmonary testing in 2 days plus a brain MRI to qualify me for IL-2 given in sequence with vemurafinib in a trial to see if the sequence will improve response and duration over either drug independently. I finished Ipi this paast fall with no results for me. Hoping IL-2 will do the trick.
Mark
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- January 22, 2014 at 4:46 pm
Thanks, Jerry.
I am getting cardiac and pulmonary testing in 2 days plus a brain MRI to qualify me for IL-2 given in sequence with vemurafinib in a trial to see if the sequence will improve response and duration over either drug independently. I finished Ipi this paast fall with no results for me. Hoping IL-2 will do the trick.
Mark
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- January 22, 2014 at 4:46 pm
Thanks, Jerry.
I am getting cardiac and pulmonary testing in 2 days plus a brain MRI to qualify me for IL-2 given in sequence with vemurafinib in a trial to see if the sequence will improve response and duration over either drug independently. I finished Ipi this paast fall with no results for me. Hoping IL-2 will do the trick.
Mark
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- January 20, 2014 at 2:02 am
If you are in good shape, HD IL-2 is a valid treatment to try if one has a very experienced Oncologist and staff with its administration/side effects.. While only providing a positive response for around 20% of patients, it has provided what is being referred to as a CURE to about 5% of recipients. It is a tough, but do-able treatment with a quick recovery time from each treatment week. (I received 49 bags and was a partial responder for 20 months.) Others have bee free from Melanoma fro over 20 years from IL-2 administration. For some people Ipi has less short term side effects, for others,Ipi has long/longer lasting negative side effects.
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