› Forums › General Melanoma Community › Nivolumab/ipilimumab, checkmate 401
- This topic has 15 replies, 4 voices, and was last updated 9 years, 4 months ago by
Hukill.
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- October 23, 2016 at 12:21 pm
Hi.
Can anyone tell me something about this treatment? 4 days ago I get first dose of treatment. I have 25 lumps under my skin. Few are very big. Looks like stones under my skin. For now I don’t have any side effects. Can anyone had same situation? How fast this treatment working, if will be working? How lumps disappear? How the lumps are changing?
Please, let me know if You had similar story…Regads,
Sebastian
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- October 23, 2016 at 12:44 pm
Here is some info on how ipi/nivo compares to ipi alone: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/2-year-survival-outcomes-for-ipinivo.html
Here's a neat chart about time to response: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/time-to-responseipi-vs-nivo-and-ipi.html
There's much more on the blog just use the search bubble if interested. Celeste
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- October 23, 2016 at 12:44 pm
Here is some info on how ipi/nivo compares to ipi alone: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/2-year-survival-outcomes-for-ipinivo.html
Here's a neat chart about time to response: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/time-to-responseipi-vs-nivo-and-ipi.html
There's much more on the blog just use the search bubble if interested. Celeste
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- October 23, 2016 at 12:44 pm
Here is some info on how ipi/nivo compares to ipi alone: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/2-year-survival-outcomes-for-ipinivo.html
Here's a neat chart about time to response: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/time-to-responseipi-vs-nivo-and-ipi.html
There's much more on the blog just use the search bubble if interested. Celeste
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- October 23, 2016 at 12:49 pm
One last post. Pretty good response rate to combo even if you have due to side effects: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-nivo-plus-ipi-checkmate-069.html
Hope this helps. I wish you well. Celeste
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- October 23, 2016 at 12:49 pm
One last post. Pretty good response rate to combo even if you have due to side effects: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-nivo-plus-ipi-checkmate-069.html
Hope this helps. I wish you well. Celeste
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- October 23, 2016 at 12:49 pm
One last post. Pretty good response rate to combo even if you have due to side effects: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-nivo-plus-ipi-checkmate-069.html
Hope this helps. I wish you well. Celeste
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- October 23, 2016 at 1:09 pm
Hi,
Think I am about 2 weeks behind you assuming mri brain scan is clear.
This is one of those difficult questions. Some responses seem to be fairly quick, some have pseudo progression where tumours swell as immune system starts working then start reducing- stable disease with no progression is deemed a response and some seem to have a delayed response more than two months after treatment commencement, and sadly others don't respond.
Think you just have to hang in there, try and be patient and wait and see.
They reassess at week 12, so I guess that gives an indication of when a response might be expected– but given disease prior to starting treatment may have progressed for up to 6 weeks ( valid CT scan date to start of treatment)) it would only be at scan 2 the docs can confirm response.. however you are probably able to do a visual check- how about taking some photos say with coins or ruler so you can log the changes ?
Best of luck
Deb
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- October 23, 2016 at 1:09 pm
Hi,
Think I am about 2 weeks behind you assuming mri brain scan is clear.
This is one of those difficult questions. Some responses seem to be fairly quick, some have pseudo progression where tumours swell as immune system starts working then start reducing- stable disease with no progression is deemed a response and some seem to have a delayed response more than two months after treatment commencement, and sadly others don't respond.
Think you just have to hang in there, try and be patient and wait and see.
They reassess at week 12, so I guess that gives an indication of when a response might be expected– but given disease prior to starting treatment may have progressed for up to 6 weeks ( valid CT scan date to start of treatment)) it would only be at scan 2 the docs can confirm response.. however you are probably able to do a visual check- how about taking some photos say with coins or ruler so you can log the changes ?
Best of luck
Deb
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- October 23, 2016 at 1:09 pm
Hi,
Think I am about 2 weeks behind you assuming mri brain scan is clear.
This is one of those difficult questions. Some responses seem to be fairly quick, some have pseudo progression where tumours swell as immune system starts working then start reducing- stable disease with no progression is deemed a response and some seem to have a delayed response more than two months after treatment commencement, and sadly others don't respond.
Think you just have to hang in there, try and be patient and wait and see.
They reassess at week 12, so I guess that gives an indication of when a response might be expected– but given disease prior to starting treatment may have progressed for up to 6 weeks ( valid CT scan date to start of treatment)) it would only be at scan 2 the docs can confirm response.. however you are probably able to do a visual check- how about taking some photos say with coins or ruler so you can log the changes ?
Best of luck
Deb
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- October 24, 2016 at 1:42 pm
I just posted my scan results at 14 weeks. I had 7 mets in my lungs, 5 are gone and the other 2 are down to 2.5mm and 2mm. I noticed about the 2nd week it was working because I had developed a sharp pain in my chest about where one of the mets was. About the 2nd week the pain went away. I had a chest scan at 8 weeks and 5 were smaller and 2 were larger which they probably were swollen due to Tcells. I got the rash early in my second week. Side effects are a good sign that your body is reacting to the drugs and they are working. I have been very lucky on side effects. I got the rash for several weeks and it went away but came back later. It has not itched like a lot of people say but it is still there on my arms and upper chest. I ran fever for 6 weeks which was horrible but kept it under control with motrin every 4 hours. I now have a very dry mouth for 5 weeks and dealing with it but still able to work and do normal things. Had fatigue and no appetite the first 4 or 5 weeks but that has gone. I just got my second dose of just opdivo on 10/21. If it works it will show over time, be patient. Good luck!
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- October 24, 2016 at 1:42 pm
I just posted my scan results at 14 weeks. I had 7 mets in my lungs, 5 are gone and the other 2 are down to 2.5mm and 2mm. I noticed about the 2nd week it was working because I had developed a sharp pain in my chest about where one of the mets was. About the 2nd week the pain went away. I had a chest scan at 8 weeks and 5 were smaller and 2 were larger which they probably were swollen due to Tcells. I got the rash early in my second week. Side effects are a good sign that your body is reacting to the drugs and they are working. I have been very lucky on side effects. I got the rash for several weeks and it went away but came back later. It has not itched like a lot of people say but it is still there on my arms and upper chest. I ran fever for 6 weeks which was horrible but kept it under control with motrin every 4 hours. I now have a very dry mouth for 5 weeks and dealing with it but still able to work and do normal things. Had fatigue and no appetite the first 4 or 5 weeks but that has gone. I just got my second dose of just opdivo on 10/21. If it works it will show over time, be patient. Good luck!
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- October 24, 2016 at 1:42 pm
I just posted my scan results at 14 weeks. I had 7 mets in my lungs, 5 are gone and the other 2 are down to 2.5mm and 2mm. I noticed about the 2nd week it was working because I had developed a sharp pain in my chest about where one of the mets was. About the 2nd week the pain went away. I had a chest scan at 8 weeks and 5 were smaller and 2 were larger which they probably were swollen due to Tcells. I got the rash early in my second week. Side effects are a good sign that your body is reacting to the drugs and they are working. I have been very lucky on side effects. I got the rash for several weeks and it went away but came back later. It has not itched like a lot of people say but it is still there on my arms and upper chest. I ran fever for 6 weeks which was horrible but kept it under control with motrin every 4 hours. I now have a very dry mouth for 5 weeks and dealing with it but still able to work and do normal things. Had fatigue and no appetite the first 4 or 5 weeks but that has gone. I just got my second dose of just opdivo on 10/21. If it works it will show over time, be patient. Good luck!
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