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What can we expect?

Forums General Melanoma Community What can we expect?

  • Post
    blessd4x
    Participant

      My husband, stage IV, currently on Opdivo and we're up to treatment #8 of 12 in the next week.  Recent scans show no disease.  The Opdivo is playin havoc with his body as we expected, but grateful for clear scans.  We will have next set of scans in April.  His last Opdivo treatment is May 2nd.  What can we expect after that?  More scans every 3 months?  Different meds?  I guess I feel a little in the dark as far as how this goes forward. 

      Thank you everyone!

    Viewing 11 reply threads
    • Replies
        JuTMSY4
        Participant

          Hi – I'm sorry you're dealing with all this, but I'm glad that you're there to support your husband.  Good caregivers are vital to treatment.

          As to what to expect.  The sorta odd blessing here is, no one knows – which is a pretty good thing.

          First, it depends on your country – most countries have different protocols.  I think the EU is roughly all the same, but the US is definitely different.  I do not know about others.  

          To that end, it generally depends on your doc.  I know pembro patients can have incredibly limit courses, 1 year, 2 years or indefintiely.  My understanding, albeit I don't know, is that Opdivo is similar in that vein, but clearly you have a different experience.  Others will chime in.

          That being said, typically, if you're NED, you can definitely expect continuing scans of the 3 month variety (or whatever you typically get) for several years.  If NED continues, I imagine they'll spread them out more, like they do with Stage III patients, but I don't know.  

          As to additional meds, I suspect, outside a clinical trial, you won't try additional meds.  Again, I don't know.

          These are all great questions to discuss with your doc.  The bad news is, many NED patients are in new territory.  The good news is that that new territory is surviving for longe periods and/or durable responses.

          Good luck and I hope you get continued NED.  

          JuTMSY4
          Participant

            Hi – I'm sorry you're dealing with all this, but I'm glad that you're there to support your husband.  Good caregivers are vital to treatment.

            As to what to expect.  The sorta odd blessing here is, no one knows – which is a pretty good thing.

            First, it depends on your country – most countries have different protocols.  I think the EU is roughly all the same, but the US is definitely different.  I do not know about others.  

            To that end, it generally depends on your doc.  I know pembro patients can have incredibly limit courses, 1 year, 2 years or indefintiely.  My understanding, albeit I don't know, is that Opdivo is similar in that vein, but clearly you have a different experience.  Others will chime in.

            That being said, typically, if you're NED, you can definitely expect continuing scans of the 3 month variety (or whatever you typically get) for several years.  If NED continues, I imagine they'll spread them out more, like they do with Stage III patients, but I don't know.  

            As to additional meds, I suspect, outside a clinical trial, you won't try additional meds.  Again, I don't know.

            These are all great questions to discuss with your doc.  The bad news is, many NED patients are in new territory.  The good news is that that new territory is surviving for longe periods and/or durable responses.

            Good luck and I hope you get continued NED.  

            JuTMSY4
            Participant

              Hi – I'm sorry you're dealing with all this, but I'm glad that you're there to support your husband.  Good caregivers are vital to treatment.

              As to what to expect.  The sorta odd blessing here is, no one knows – which is a pretty good thing.

              First, it depends on your country – most countries have different protocols.  I think the EU is roughly all the same, but the US is definitely different.  I do not know about others.  

              To that end, it generally depends on your doc.  I know pembro patients can have incredibly limit courses, 1 year, 2 years or indefintiely.  My understanding, albeit I don't know, is that Opdivo is similar in that vein, but clearly you have a different experience.  Others will chime in.

              That being said, typically, if you're NED, you can definitely expect continuing scans of the 3 month variety (or whatever you typically get) for several years.  If NED continues, I imagine they'll spread them out more, like they do with Stage III patients, but I don't know.  

              As to additional meds, I suspect, outside a clinical trial, you won't try additional meds.  Again, I don't know.

              These are all great questions to discuss with your doc.  The bad news is, many NED patients are in new territory.  The good news is that that new territory is surviving for longe periods and/or durable responses.

              Good luck and I hope you get continued NED.  

              BrianP
              Participant

                Congrats on the great results.  I have no crystal ball but I just wanted to give you some encouragement.  There are many folks out there who have had amazing results but with severe side effects.  A lot of those folks had to come off treatment but continued to have great results after stopping treatment.  Many if not most remain  NED.  Don't think your husband has to receive all his scheduled treatments to achieve the desired result. 

                After stopping treatment most doctors I've spoken with recommend scans every 3 months for at least the first year.  Some might even do every three months for the first two years.  I myself would be inclined to increase the interval to every 4 to 6 months after the first year.

                Best of luck to you two.

                Brian

                 

                BrianP
                Participant

                  Congrats on the great results.  I have no crystal ball but I just wanted to give you some encouragement.  There are many folks out there who have had amazing results but with severe side effects.  A lot of those folks had to come off treatment but continued to have great results after stopping treatment.  Many if not most remain  NED.  Don't think your husband has to receive all his scheduled treatments to achieve the desired result. 

                  After stopping treatment most doctors I've spoken with recommend scans every 3 months for at least the first year.  Some might even do every three months for the first two years.  I myself would be inclined to increase the interval to every 4 to 6 months after the first year.

                  Best of luck to you two.

                  Brian

                   

                  BrianP
                  Participant

                    Congrats on the great results.  I have no crystal ball but I just wanted to give you some encouragement.  There are many folks out there who have had amazing results but with severe side effects.  A lot of those folks had to come off treatment but continued to have great results after stopping treatment.  Many if not most remain  NED.  Don't think your husband has to receive all his scheduled treatments to achieve the desired result. 

                    After stopping treatment most doctors I've spoken with recommend scans every 3 months for at least the first year.  Some might even do every three months for the first two years.  I myself would be inclined to increase the interval to every 4 to 6 months after the first year.

                    Best of luck to you two.

                    Brian

                     

                    blessd4x
                    Participant

                      Thank you for your words of encouragement.  We are in the US and Opdivo is still a new drug so its uncertain to me how this will play out.  His doctor is good, but flies in and out of the room so quickly and uses medical lingo that takes a while to process what she said.  There are life expentancy rates, that I've seen, on opdivo.  Of course the other life expectancy rates are terrifying.  I feel like Im holding my breath all the time.  Even he seems to be succumbing to it some.  His positivity is being shaken.  I dont share my concerns with him as I just try to stay upbeat and positive for him.  Inside is a different story.  Anyway we are grateful for the clear scans for now and move forward and be hopeful.  We have planned a trip to the UK in May.  His family is there and he feels we need to make this trip.  Im done rambling. lol.  Thank you for everything.

                      R

                      blessd4x
                      Participant

                        Thank you for your words of encouragement.  We are in the US and Opdivo is still a new drug so its uncertain to me how this will play out.  His doctor is good, but flies in and out of the room so quickly and uses medical lingo that takes a while to process what she said.  There are life expentancy rates, that I've seen, on opdivo.  Of course the other life expectancy rates are terrifying.  I feel like Im holding my breath all the time.  Even he seems to be succumbing to it some.  His positivity is being shaken.  I dont share my concerns with him as I just try to stay upbeat and positive for him.  Inside is a different story.  Anyway we are grateful for the clear scans for now and move forward and be hopeful.  We have planned a trip to the UK in May.  His family is there and he feels we need to make this trip.  Im done rambling. lol.  Thank you for everything.

                        R

                        blessd4x
                        Participant

                          Thank you for your words of encouragement.  We are in the US and Opdivo is still a new drug so its uncertain to me how this will play out.  His doctor is good, but flies in and out of the room so quickly and uses medical lingo that takes a while to process what she said.  There are life expentancy rates, that I've seen, on opdivo.  Of course the other life expectancy rates are terrifying.  I feel like Im holding my breath all the time.  Even he seems to be succumbing to it some.  His positivity is being shaken.  I dont share my concerns with him as I just try to stay upbeat and positive for him.  Inside is a different story.  Anyway we are grateful for the clear scans for now and move forward and be hopeful.  We have planned a trip to the UK in May.  His family is there and he feels we need to make this trip.  Im done rambling. lol.  Thank you for everything.

                          R

                          ed williams
                          Participant

                            Hi anon, just curious about the # of treatments being stopped at 12? I thought that Opdivo which most of call Nivolumab is approved by the FDA for continuous treatments unless the patient progresses and stops responding. I know my clinical trial is set up that way, I have been recieving the drug every two weeks for just over 2 years. It is now my choice if I want to stop or continue. Again this is my understanding and if it is different in your area maybe if you ask the drug company they may allow you longer access to the drug. Opdivo is really a great option for beating or controling melanoma, if you are a stats type person. What kind of side effects is your husband having? Wishing your husband the best and I hope he continues with the NED status!!!! Ed

                              blessd4x
                              Participant

                                Hello Ed, I dont know why the magic # is 12 (6 months) honestly.  Im definiteyly a stats person.  My husband is having horrible abdominal paid and stays in the bathroom for 20 minutes at a time. Constipation is an issue.  Pain under his ribs and travels to his back.  Bumps all over his body but no itching.  With each treatment his side effects get worse.  I am guessing its because of build up of the meds.  Head aches, memory loss, some coordination issues and weight loss.  Are you having any side effects? 

                                R

                                blessd4x
                                Participant

                                  Hello Ed, I dont know why the magic # is 12 (6 months) honestly.  Im definiteyly a stats person.  My husband is having horrible abdominal paid and stays in the bathroom for 20 minutes at a time. Constipation is an issue.  Pain under his ribs and travels to his back.  Bumps all over his body but no itching.  With each treatment his side effects get worse.  I am guessing its because of build up of the meds.  Head aches, memory loss, some coordination issues and weight loss.  Are you having any side effects? 

                                  R

                                  blessd4x
                                  Participant

                                    Hello Ed, I dont know why the magic # is 12 (6 months) honestly.  Im definiteyly a stats person.  My husband is having horrible abdominal paid and stays in the bathroom for 20 minutes at a time. Constipation is an issue.  Pain under his ribs and travels to his back.  Bumps all over his body but no itching.  With each treatment his side effects get worse.  I am guessing its because of build up of the meds.  Head aches, memory loss, some coordination issues and weight loss.  Are you having any side effects? 

                                    R

                                    ed williams
                                    Participant

                                      I have been very lucky during my trial, with fatigue after treatments being the main side effects. I get itchy as well but that comes and goes. My scans keep coming back showing stable disease ( partial responder) for the last 22 months. What does your husbands doctor recommend to help with his constipation? Wishing you the best!!! Ed

                                      ed williams
                                      Participant

                                        I have been very lucky during my trial, with fatigue after treatments being the main side effects. I get itchy as well but that comes and goes. My scans keep coming back showing stable disease ( partial responder) for the last 22 months. What does your husbands doctor recommend to help with his constipation? Wishing you the best!!! Ed

                                        blessd4x
                                        Participant

                                          Hello Ed, His dr recommends otc stool softeners for his constipation.  The fatigue and pain in his mid section we are just dealing with.  Same with weight loss.  Its starting to show in his face, sometime the color is off, sometimes he looks like his skin is sunk into his face.  I say nothing but oh how it kills me to see this. 

                                          blessd4x
                                          Participant

                                            Hello Ed, His dr recommends otc stool softeners for his constipation.  The fatigue and pain in his mid section we are just dealing with.  Same with weight loss.  Its starting to show in his face, sometime the color is off, sometimes he looks like his skin is sunk into his face.  I say nothing but oh how it kills me to see this. 

                                            blessd4x
                                            Participant

                                              Hello Ed, His dr recommends otc stool softeners for his constipation.  The fatigue and pain in his mid section we are just dealing with.  Same with weight loss.  Its starting to show in his face, sometime the color is off, sometimes he looks like his skin is sunk into his face.  I say nothing but oh how it kills me to see this. 

                                              ed williams
                                              Participant

                                                I have been very lucky during my trial, with fatigue after treatments being the main side effects. I get itchy as well but that comes and goes. My scans keep coming back showing stable disease ( partial responder) for the last 22 months. What does your husbands doctor recommend to help with his constipation? Wishing you the best!!! Ed

                                              ed williams
                                              Participant

                                                Hi anon, just curious about the # of treatments being stopped at 12? I thought that Opdivo which most of call Nivolumab is approved by the FDA for continuous treatments unless the patient progresses and stops responding. I know my clinical trial is set up that way, I have been recieving the drug every two weeks for just over 2 years. It is now my choice if I want to stop or continue. Again this is my understanding and if it is different in your area maybe if you ask the drug company they may allow you longer access to the drug. Opdivo is really a great option for beating or controling melanoma, if you are a stats type person. What kind of side effects is your husband having? Wishing your husband the best and I hope he continues with the NED status!!!! Ed

                                                ed williams
                                                Participant

                                                  Hi anon, just curious about the # of treatments being stopped at 12? I thought that Opdivo which most of call Nivolumab is approved by the FDA for continuous treatments unless the patient progresses and stops responding. I know my clinical trial is set up that way, I have been recieving the drug every two weeks for just over 2 years. It is now my choice if I want to stop or continue. Again this is my understanding and if it is different in your area maybe if you ask the drug company they may allow you longer access to the drug. Opdivo is really a great option for beating or controling melanoma, if you are a stats type person. What kind of side effects is your husband having? Wishing your husband the best and I hope he continues with the NED status!!!! Ed

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