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Worried mom for 7 Y.O son

Forums Pediatric & AYA Melanoma Community Worried mom for 7 Y.O son

  • Post
    mom123
    Participant
      Hello all,
       
      My son started PD-1 for sarcoma at Dana Farber. He is the first pediatric who is prescribed for the medicine (Merck MK-3475) and his oncologist does not have experience with it.
      Since I am an avid reader of the forum, I was thinking that posting here might help me with my concern with the current treatment efficiency. Could you please let me know if any of the following behaviors were related to a good/bad response.
       
      The tumor is in his neck lymph nodes. My son's had many cycles of chemotherapy cycles before this treatment, radiation and surgery. He is prescribed for 2mg/kg of the MK-3474 (Keytruda) every 3 weeks. He received the 2nd dose 2 weeks ago. I dont know if the tumor responding and would like to ask if any of the following visible signs are familiar to responders
      – the tumor "moved" from the "original" location to a lower location in his neck
      – The tumor surface became "bumpy" and not a round ball (the way the previous tumor was formed)
      – the tumor has red areas (not all of it – I can attach a picture if needed)
       
      As some of you reported – he is tired, complaining about pain in his legs (not sure if this is a joints pain), headaches, pain at the tumor's area and around his eyes.
       
      Please let me know if any of the above sounds familiar to you.
       
      Many thanks & Happy new year,
      Mom
    Viewing 14 reply threads
    • Replies
        JoshF
        Participant

          I can't really respond but wanted to let you know that I pray everything goes well for your son and family. I hate reading about a child dealing with this…heartbreaking.

          JoshF
          Participant

            I can't really respond but wanted to let you know that I pray everything goes well for your son and family. I hate reading about a child dealing with this…heartbreaking.

            JoshF
            Participant

              I can't really respond but wanted to let you know that I pray everything goes well for your son and family. I hate reading about a child dealing with this…heartbreaking.

                mom123
                Participant

                  Thank you Josh

                  AMEN!

                  mom123
                  Participant

                    Thank you Josh

                    AMEN!

                    mom123
                    Participant

                      Thank you Josh

                      AMEN!

                    Patina
                    Participant
                      My Mom was put on Yervoy/ipi 12/12/13. She had gamma knife radiation on 12/9/13 for 8 tumors. 3 to 4 days after getting ipi the tumors on her scalp and neck felt strange (tingling) and the tumors became hard. Within days they started shrinking. She only had 3 infusions, one which was 2 months after the second due to colitis. By the 6 week the tumors on her scalpe/neck were gone or almost gone. She had stage IV with brain mets.
                      It sounds like your son has some of the same things happening with the description you gave. I hope this is the case.
                      As for my Mom today, het scalp is pink with blue dots where the biopsy were done. All the tumors are gone from her scalp and neck. Doctor’s can’t get over her quick response and say they don’t believe she will need any other treatment. She could not have responded better.

                      My thoughts are with you and your son.

                      Patina
                      Participant
                        My Mom was put on Yervoy/ipi 12/12/13. She had gamma knife radiation on 12/9/13 for 8 tumors. 3 to 4 days after getting ipi the tumors on her scalp and neck felt strange (tingling) and the tumors became hard. Within days they started shrinking. She only had 3 infusions, one which was 2 months after the second due to colitis. By the 6 week the tumors on her scalpe/neck were gone or almost gone. She had stage IV with brain mets.
                        It sounds like your son has some of the same things happening with the description you gave. I hope this is the case.
                        As for my Mom today, het scalp is pink with blue dots where the biopsy were done. All the tumors are gone from her scalp and neck. Doctor’s can’t get over her quick response and say they don’t believe she will need any other treatment. She could not have responded better.

                        My thoughts are with you and your son.

                        Patina
                        Participant
                          My Mom was put on Yervoy/ipi 12/12/13. She had gamma knife radiation on 12/9/13 for 8 tumors. 3 to 4 days after getting ipi the tumors on her scalp and neck felt strange (tingling) and the tumors became hard. Within days they started shrinking. She only had 3 infusions, one which was 2 months after the second due to colitis. By the 6 week the tumors on her scalpe/neck were gone or almost gone. She had stage IV with brain mets.
                          It sounds like your son has some of the same things happening with the description you gave. I hope this is the case.
                          As for my Mom today, het scalp is pink with blue dots where the biopsy were done. All the tumors are gone from her scalp and neck. Doctor’s can’t get over her quick response and say they don’t believe she will need any other treatment. She could not have responded better.

                          My thoughts are with you and your son.

                            mom123
                            Participant

                              Hi,

                              Thank you for your response. Your mom had an amazing reponse! could you please elaborate further on how my son's reponse is similar.

                              Did you see a movement at the tumor location? did it become bumpy?

                               

                              my son says that it the tumor is getting smaller – but I can not see why.

                              please let me know what your thoughts are

                               

                              Mom

                              mom123
                              Participant

                                Hi,

                                Thank you for your response. Your mom had an amazing reponse! could you please elaborate further on how my son's reponse is similar.

                                Did you see a movement at the tumor location? did it become bumpy?

                                 

                                my son says that it the tumor is getting smaller – but I can not see why.

                                please let me know what your thoughts are

                                 

                                Mom

                                mom123
                                Participant

                                  Hi,

                                  Thank you for your response. Your mom had an amazing reponse! could you please elaborate further on how my son's reponse is similar.

                                  Did you see a movement at the tumor location? did it become bumpy?

                                   

                                  my son says that it the tumor is getting smaller – but I can not see why.

                                  please let me know what your thoughts are

                                   

                                  Mom

                                arthurjedi007
                                Participant

                                  I got my first keytruda dose on May 21. I get my twelfth this Tuesday. Same dose and frequency as your son.

                                  For the first ten days I had minor fevers chills grogginess. Since then just occasional fevers.

                                  make sure they are checking his blood work properly. Especially his thyroid. I say that because you said the doc is not familiar with pd1.

                                  As far as your son saying the tumor is shrinking I suggest you believe it. A lot of this battle is in the mind. I remember telling myself my tumors are shrinking and amazingly by the first scan two thirds of them were shrinking. The two external ones I have weren't though.

                                  For my external tumors yes mom measures them every week and she describes it as the tumor has shifted. This has happened several times. I'm not sure what it means but the way I see it is a battle field between the cancer and my immune system. So I guess it shifts from time to time.

                                  Bumpy sounds good. Could be the solid mass being destroyed and breaking into smaller parts.

                                  Red could be a mild rash which can be an indicator of the immune system reacting.

                                  So in my opinion all of that is good signs and except for the bumpy it is based on my own experience. For the red rash do nothing. Cortisone is bad in that it lowers immune system. Found that out the hard way too.

                                  As far as tired my doc said it is the disease but I have a heavy tumor load so maybe he isn't getting enough protein or something .

                                  Joint pains does not sound good. That can be a rare side affect of the braf Meds but not sure about pd1. You might see if there is another doc at Dana farber that is familiar with pd1. Same for the headaches that could be the pituitary gland so they need to check that too.

                                  Pain at the tumor area is surprising. For my big visible one in my shoulder that keeps shifting I found it hurt way less and I could move my arm better and later I found my immune system had destroyed a big chunk in the center of it. So I'm not sure why the pain.

                                  Hope that helps some. Please believe your son when he says it is shrinking. That is the confirmation he needs for hope. I remember asking my parents pretty much every day if the pd1 is working. They always confirm it is and low and behold scans keep proving it. I'm 47 and they moved in to help me through this.

                                  i remember when I was your sons age I was big into comics and playing and having fun. He Is a true melanoma warrior. I will pray for him. Poor little guy. But I think he's going to beat this. I still sometimes wear a superhero tshirt for courage and luck.

                                  Artie

                                   

                                  arthurjedi007
                                  Participant

                                    I got my first keytruda dose on May 21. I get my twelfth this Tuesday. Same dose and frequency as your son.

                                    For the first ten days I had minor fevers chills grogginess. Since then just occasional fevers.

                                    make sure they are checking his blood work properly. Especially his thyroid. I say that because you said the doc is not familiar with pd1.

                                    As far as your son saying the tumor is shrinking I suggest you believe it. A lot of this battle is in the mind. I remember telling myself my tumors are shrinking and amazingly by the first scan two thirds of them were shrinking. The two external ones I have weren't though.

                                    For my external tumors yes mom measures them every week and she describes it as the tumor has shifted. This has happened several times. I'm not sure what it means but the way I see it is a battle field between the cancer and my immune system. So I guess it shifts from time to time.

                                    Bumpy sounds good. Could be the solid mass being destroyed and breaking into smaller parts.

                                    Red could be a mild rash which can be an indicator of the immune system reacting.

                                    So in my opinion all of that is good signs and except for the bumpy it is based on my own experience. For the red rash do nothing. Cortisone is bad in that it lowers immune system. Found that out the hard way too.

                                    As far as tired my doc said it is the disease but I have a heavy tumor load so maybe he isn't getting enough protein or something .

                                    Joint pains does not sound good. That can be a rare side affect of the braf Meds but not sure about pd1. You might see if there is another doc at Dana farber that is familiar with pd1. Same for the headaches that could be the pituitary gland so they need to check that too.

                                    Pain at the tumor area is surprising. For my big visible one in my shoulder that keeps shifting I found it hurt way less and I could move my arm better and later I found my immune system had destroyed a big chunk in the center of it. So I'm not sure why the pain.

                                    Hope that helps some. Please believe your son when he says it is shrinking. That is the confirmation he needs for hope. I remember asking my parents pretty much every day if the pd1 is working. They always confirm it is and low and behold scans keep proving it. I'm 47 and they moved in to help me through this.

                                    i remember when I was your sons age I was big into comics and playing and having fun. He Is a true melanoma warrior. I will pray for him. Poor little guy. But I think he's going to beat this. I still sometimes wear a superhero tshirt for courage and luck.

                                    Artie

                                     

                                    arthurjedi007
                                    Participant

                                      I got my first keytruda dose on May 21. I get my twelfth this Tuesday. Same dose and frequency as your son.

                                      For the first ten days I had minor fevers chills grogginess. Since then just occasional fevers.

                                      make sure they are checking his blood work properly. Especially his thyroid. I say that because you said the doc is not familiar with pd1.

                                      As far as your son saying the tumor is shrinking I suggest you believe it. A lot of this battle is in the mind. I remember telling myself my tumors are shrinking and amazingly by the first scan two thirds of them were shrinking. The two external ones I have weren't though.

                                      For my external tumors yes mom measures them every week and she describes it as the tumor has shifted. This has happened several times. I'm not sure what it means but the way I see it is a battle field between the cancer and my immune system. So I guess it shifts from time to time.

                                      Bumpy sounds good. Could be the solid mass being destroyed and breaking into smaller parts.

                                      Red could be a mild rash which can be an indicator of the immune system reacting.

                                      So in my opinion all of that is good signs and except for the bumpy it is based on my own experience. For the red rash do nothing. Cortisone is bad in that it lowers immune system. Found that out the hard way too.

                                      As far as tired my doc said it is the disease but I have a heavy tumor load so maybe he isn't getting enough protein or something .

                                      Joint pains does not sound good. That can be a rare side affect of the braf Meds but not sure about pd1. You might see if there is another doc at Dana farber that is familiar with pd1. Same for the headaches that could be the pituitary gland so they need to check that too.

                                      Pain at the tumor area is surprising. For my big visible one in my shoulder that keeps shifting I found it hurt way less and I could move my arm better and later I found my immune system had destroyed a big chunk in the center of it. So I'm not sure why the pain.

                                      Hope that helps some. Please believe your son when he says it is shrinking. That is the confirmation he needs for hope. I remember asking my parents pretty much every day if the pd1 is working. They always confirm it is and low and behold scans keep proving it. I'm 47 and they moved in to help me through this.

                                      i remember when I was your sons age I was big into comics and playing and having fun. He Is a true melanoma warrior. I will pray for him. Poor little guy. But I think he's going to beat this. I still sometimes wear a superhero tshirt for courage and luck.

                                      Artie

                                       

                                        mom123
                                        Participant
                                          Hi Artie,
                                          Thank you for sharing your experience with me. I will make sure to check his hormones levels and to keep on supporting him.
                                          your comics note is so true. I think that you know my hero ๐Ÿ˜‰

                                           

                                          Mom
                                          tschmith
                                          Participant

                                            Hi!   I'm sorry you and your son are going through this…nothing worse than seeing our children suffer.  I too am a Keytruda patient.  My doctors said joint pain is one of the side effects.  At first I had fevers and the itchiest rash ever!  I've had nine infusions and the side effects have eased.  I have vitaligo…my eyebrows and lashes turned white.  I also have some areas of lack of pigment on my skin.  Some moles and many freckles have disappeared.  I wonder if your oncologist could consult with a doctor at Dana Farber who has experience with Keytruda? Like Artie said, they have to keep a careful watch on the blood work.   It's been a great drug for me and I hope your son does well with it too!!!

                                            Best wishes…

                                            Terrie

                                            mom123
                                            Participant

                                              Hi Terrie,

                                              Thank you for your advice. I will definitely ask to see an experienced dr.

                                              Best wishes,

                                              Mom

                                              mom123
                                              Participant

                                                Hi Terrie,

                                                Thank you for your advice. I will definitely ask to see an experienced dr.

                                                Best wishes,

                                                Mom

                                                mom123
                                                Participant

                                                  Hi Terrie,

                                                  Thank you for your advice. I will definitely ask to see an experienced dr.

                                                  Best wishes,

                                                  Mom

                                                  tschmith
                                                  Participant

                                                    Hi!   I'm sorry you and your son are going through this…nothing worse than seeing our children suffer.  I too am a Keytruda patient.  My doctors said joint pain is one of the side effects.  At first I had fevers and the itchiest rash ever!  I've had nine infusions and the side effects have eased.  I have vitaligo…my eyebrows and lashes turned white.  I also have some areas of lack of pigment on my skin.  Some moles and many freckles have disappeared.  I wonder if your oncologist could consult with a doctor at Dana Farber who has experience with Keytruda? Like Artie said, they have to keep a careful watch on the blood work.   It's been a great drug for me and I hope your son does well with it too!!!

                                                    Best wishes…

                                                    Terrie

                                                    tschmith
                                                    Participant

                                                      Hi!   I'm sorry you and your son are going through this…nothing worse than seeing our children suffer.  I too am a Keytruda patient.  My doctors said joint pain is one of the side effects.  At first I had fevers and the itchiest rash ever!  I've had nine infusions and the side effects have eased.  I have vitaligo…my eyebrows and lashes turned white.  I also have some areas of lack of pigment on my skin.  Some moles and many freckles have disappeared.  I wonder if your oncologist could consult with a doctor at Dana Farber who has experience with Keytruda? Like Artie said, they have to keep a careful watch on the blood work.   It's been a great drug for me and I hope your son does well with it too!!!

                                                      Best wishes…

                                                      Terrie

                                                      mom123
                                                      Participant
                                                        Hi Artie,
                                                        Thank you for sharing your experience with me. I will make sure to check his hormones levels and to keep on supporting him.
                                                        your comics note is so true. I think that you know my hero ๐Ÿ˜‰

                                                         

                                                        Mom
                                                        mom123
                                                        Participant
                                                          Hi Artie,
                                                          Thank you for sharing your experience with me. I will make sure to check his hormones levels and to keep on supporting him.
                                                          your comics note is so true. I think that you know my hero ๐Ÿ˜‰

                                                           

                                                          Mom
                                                        JustMeInCA
                                                        Participant

                                                          I'm not sure we can compare an 83-year-old with a 7-year-old, but my father has fatigue and much increased pain in his tumors starting a couple days after his Keytruda infusions (he's had four now), and this lasts about a week. I haven't noticed any shifting or bumpiness, though. His smallest cutaneous tumor is now completely gone, the second and third smallest have shrunk by at least half, but the three largest (measuring about 3/4 inch to 1 inch and ulcerated) don't seem to have changed much. I'd also trust in your son's perceptions since it is his body. I wish him and you the best. It breaks my heart to hear of kids suffering with something like this.

                                                          JustMeInCA
                                                          Participant

                                                            I'm not sure we can compare an 83-year-old with a 7-year-old, but my father has fatigue and much increased pain in his tumors starting a couple days after his Keytruda infusions (he's had four now), and this lasts about a week. I haven't noticed any shifting or bumpiness, though. His smallest cutaneous tumor is now completely gone, the second and third smallest have shrunk by at least half, but the three largest (measuring about 3/4 inch to 1 inch and ulcerated) don't seem to have changed much. I'd also trust in your son's perceptions since it is his body. I wish him and you the best. It breaks my heart to hear of kids suffering with something like this.

                                                              mom123
                                                              Participant

                                                                Thank you for posting your dad's experience. It is encouraging to know that a pain in the tumor might imply on immune activity. I know that the reaction is very personal…but it gives me hope

                                                                Thank you,

                                                                Mom

                                                                mom123
                                                                Participant

                                                                  Thank you for posting your dad's experience. It is encouraging to know that a pain in the tumor might imply on immune activity. I know that the reaction is very personal…but it gives me hope

                                                                  Thank you,

                                                                  Mom

                                                                  mom123
                                                                  Participant

                                                                    Thank you for posting your dad's experience. It is encouraging to know that a pain in the tumor might imply on immune activity. I know that the reaction is very personal…but it gives me hope

                                                                    Thank you,

                                                                    Mom

                                                                  JustMeInCA
                                                                  Participant

                                                                    I'm not sure we can compare an 83-year-old with a 7-year-old, but my father has fatigue and much increased pain in his tumors starting a couple days after his Keytruda infusions (he's had four now), and this lasts about a week. I haven't noticed any shifting or bumpiness, though. His smallest cutaneous tumor is now completely gone, the second and third smallest have shrunk by at least half, but the three largest (measuring about 3/4 inch to 1 inch and ulcerated) don't seem to have changed much. I'd also trust in your son's perceptions since it is his body. I wish him and you the best. It breaks my heart to hear of kids suffering with something like this.

                                                                    sweetaugust
                                                                    Participant

                                                                      Hi mom,

                                                                      I can't really help you with the lumps and bumps question, but I have been on MK-3475 since Oct 2012 for my stage 4 melanoma.   I am doing great and have felt pretty great throughout.  I've had a rash on my chest and the back of my head since starting treatment, but they both have cleared up as of a couple months ago.  I've had some nausea and a little joint pain, but really nothing to report.  I don't even take any drugs, whether over-the-counter or prescription. 

                                                                      I am just chiming in because I am also seen at Dana Farber.  My doctor is Stephen Hodi.  He heads up the Melanoma clinic there.  Maybe he could help with your questions.

                                                                      All my best to you and your family, Laurie

                                                                      sweetaugust
                                                                      Participant

                                                                        Hi mom,

                                                                        I can't really help you with the lumps and bumps question, but I have been on MK-3475 since Oct 2012 for my stage 4 melanoma.   I am doing great and have felt pretty great throughout.  I've had a rash on my chest and the back of my head since starting treatment, but they both have cleared up as of a couple months ago.  I've had some nausea and a little joint pain, but really nothing to report.  I don't even take any drugs, whether over-the-counter or prescription. 

                                                                        I am just chiming in because I am also seen at Dana Farber.  My doctor is Stephen Hodi.  He heads up the Melanoma clinic there.  Maybe he could help with your questions.

                                                                        All my best to you and your family, Laurie

                                                                          mom123
                                                                          Participant

                                                                            Hi Laurie,

                                                                            Thank you for your post. I am planned to meet the oncologist on Thursday. I know that he was consulting with dr. Hodi before and during the treatment. I will ask my doctor to schedule a meeting for my son with dr. Hodi.

                                                                            Mom

                                                                            mom123
                                                                            Participant

                                                                              Hi Laurie,

                                                                              Thank you for your post. I am planned to meet the oncologist on Thursday. I know that he was consulting with dr. Hodi before and during the treatment. I will ask my doctor to schedule a meeting for my son with dr. Hodi.

                                                                              Mom

                                                                              mom123
                                                                              Participant

                                                                                Hi Laurie,

                                                                                Thank you for your post. I am planned to meet the oncologist on Thursday. I know that he was consulting with dr. Hodi before and during the treatment. I will ask my doctor to schedule a meeting for my son with dr. Hodi.

                                                                                Mom

                                                                                sweetaugust
                                                                                Participant

                                                                                  Just knowing you have Dr. Hodi consulting with your son's doctor is great news.  You are in very good hands.  All my best to you and your son.  Laurie

                                                                                  sweetaugust
                                                                                  Participant

                                                                                    Just knowing you have Dr. Hodi consulting with your son's doctor is great news.  You are in very good hands.  All my best to you and your son.  Laurie

                                                                                    sweetaugust
                                                                                    Participant

                                                                                      Just knowing you have Dr. Hodi consulting with your son's doctor is great news.  You are in very good hands.  All my best to you and your son.  Laurie

                                                                                    sweetaugust
                                                                                    Participant

                                                                                      Hi mom,

                                                                                      I can't really help you with the lumps and bumps question, but I have been on MK-3475 since Oct 2012 for my stage 4 melanoma.   I am doing great and have felt pretty great throughout.  I've had a rash on my chest and the back of my head since starting treatment, but they both have cleared up as of a couple months ago.  I've had some nausea and a little joint pain, but really nothing to report.  I don't even take any drugs, whether over-the-counter or prescription. 

                                                                                      I am just chiming in because I am also seen at Dana Farber.  My doctor is Stephen Hodi.  He heads up the Melanoma clinic there.  Maybe he could help with your questions.

                                                                                      All my best to you and your family, Laurie

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