Worried mom for 7 Y.O son

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.

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.

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.

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.

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.

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.

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

 

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

 

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

 

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.

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.

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.

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

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

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