When you Respond to Treatment

Hey Josh, I had a golf ball sized tumor in my cheek that had popped through the inside of mouth. there was one piece that i was chewing on every time i would eat. Two weeks after 1st. infusion of Pembro i noticed it shrinking and it slowly shrunk for six months until NED. Also had one node and a bone met that were gone as well. Hope this helps….

Great to hear you are responding!

Best, Paul

Hey Josh, I had a golf ball sized tumor in my cheek that had popped through the inside of mouth. there was one piece that i was chewing on every time i would eat. Two weeks after 1st. infusion of Pembro i noticed it shrinking and it slowly shrunk for six months until NED. Also had one node and a bone met that were gone as well. Hope this helps….

Great to hear you are responding!

Best, Paul

Hey Josh, I had a golf ball sized tumor in my cheek that had popped through the inside of mouth. there was one piece that i was chewing on every time i would eat. Two weeks after 1st. infusion of Pembro i noticed it shrinking and it slowly shrunk for six months until NED. Also had one node and a bone met that were gone as well. Hope this helps….

Great to hear you are responding!

Best, Paul

Hey Josh,

my father has been on pembro for 9months now, his only subq met was really large, it started to shrink a little after second infusion (6 weeks) and then it went down rapidly… at his 3 month mark and first scan it was almost completely gone…

Hang in there Josh!

Love,

Patrisa

Hey Josh,

my father has been on pembro for 9months now, his only subq met was really large, it started to shrink a little after second infusion (6 weeks) and then it went down rapidly… at his 3 month mark and first scan it was almost completely gone…

Hang in there Josh!

Love,

Patrisa

Hey Josh,

my father has been on pembro for 9months now, his only subq met was really large, it started to shrink a little after second infusion (6 weeks) and then it went down rapidly… at his 3 month mark and first scan it was almost completely gone…

Hang in there Josh!

Love,

Patrisa

My Mom had gamma knife radiation and ipi 4 days apart. 3 or 4 days after the infusion the tumors on her scalp and the tumor on her neck started tingling and they became firm.

By the 2nd infusion the tumors were much smaller. By the time she should have had her 3rd infusion some were gone including the one on her neck.

She got colitis and could not get her 3rd infusion for 3 months, but during that time the tumors on her scalp and neck were gone and just the blue color under he skin remained. Another 3 months out her skin was pink and all the tumors were gone.

I will keep my fingers crossed for you!

Good Luck!

My Mom had gamma knife radiation and ipi 4 days apart. 3 or 4 days after the infusion the tumors on her scalp and the tumor on her neck started tingling and they became firm.

By the 2nd infusion the tumors were much smaller. By the time she should have had her 3rd infusion some were gone including the one on her neck.

She got colitis and could not get her 3rd infusion for 3 months, but during that time the tumors on her scalp and neck were gone and just the blue color under he skin remained. Another 3 months out her skin was pink and all the tumors were gone.

I will keep my fingers crossed for you!

Good Luck!

My Mom had gamma knife radiation and ipi 4 days apart. 3 or 4 days after the infusion the tumors on her scalp and the tumor on her neck started tingling and they became firm.

By the 2nd infusion the tumors were much smaller. By the time she should have had her 3rd infusion some were gone including the one on her neck.

She got colitis and could not get her 3rd infusion for 3 months, but during that time the tumors on her scalp and neck were gone and just the blue color under he skin remained. Another 3 months out her skin was pink and all the tumors were gone.

I will keep my fingers crossed for you!

Good Luck!

Hey Josh,

Sounds like you're responding!!  This is great news.

I had numerous sub-qs all up my arm.  It took a few weeks (4-5?) after pembro (more after ipi, I think) but they got sore, a bit larger, and then melted away to nothing (Ok I always think of the wicked witch from the wizard of Oz when I think of them melting, but I digress!).  It was fantastic to watch and so encouraging.  Once they stopped shrinking, sometimes a small lump was left.  Rock Star Doc said that it was just the shell of a dead tumor.  It took a little longer (months) but eventually even those critters disappeared. 

I am ridiculously happy that this is happening for you too!  Happy dancing here in So Cal with you!

Julie

Hey Josh,

Sounds like you're responding!!  This is great news.

I had numerous sub-qs all up my arm.  It took a few weeks (4-5?) after pembro (more after ipi, I think) but they got sore, a bit larger, and then melted away to nothing (Ok I always think of the wicked witch from the wizard of Oz when I think of them melting, but I digress!).  It was fantastic to watch and so encouraging.  Once they stopped shrinking, sometimes a small lump was left.  Rock Star Doc said that it was just the shell of a dead tumor.  It took a little longer (months) but eventually even those critters disappeared. 

I am ridiculously happy that this is happening for you too!  Happy dancing here in So Cal with you!

Julie

Hey Josh,

Sounds like you're responding!!  This is great news.

I had numerous sub-qs all up my arm.  It took a few weeks (4-5?) after pembro (more after ipi, I think) but they got sore, a bit larger, and then melted away to nothing (Ok I always think of the wicked witch from the wizard of Oz when I think of them melting, but I digress!).  It was fantastic to watch and so encouraging.  Once they stopped shrinking, sometimes a small lump was left.  Rock Star Doc said that it was just the shell of a dead tumor.  It took a little longer (months) but eventually even those critters disappeared. 

I am ridiculously happy that this is happening for you too!  Happy dancing here in So Cal with you!

Julie

Josh –

When I started in the combi ipi/nivo trial (Jan 7, 2014) I had about a dozen sub-q lesions on my scalp, all hard and about the size of a pea. The first change I noticed was in about 2 weeks when they became a bit more inflamed (sore) and started to soften up. I also had a large tumor about the size of a lemon in my calf muscle. I had asked the oncologist about a possible resection of that tumor since it was isolated and accessible. I thought his answer was a bit bizarre when he said he wanted to leave it because it was so easily palpable and he could assess my response to therapy by checking it regularly. My other tumors (lungs, spine, neck) could only be seen/tracked on imaging studies. The leg tumor, which had been hard as a rock, started to soften at 2-3 weeks, about the same time my pulmonary symptoms of shortness of breath and coughing started to resolve. The "softening" of the tumors continued until by about 10 weeks into the trial, when they had completely resolved with only a little residual soreness in my leg. A 12 week CT/PET showed resolution of all tumors with just some lucency in the bones where tumors had been. Even this normalized over the next 3 months and I continue to be NED.

Here's hoping a similar experience for you…

DVD

Josh –

When I started in the combi ipi/nivo trial (Jan 7, 2014) I had about a dozen sub-q lesions on my scalp, all hard and about the size of a pea. The first change I noticed was in about 2 weeks when they became a bit more inflamed (sore) and started to soften up. I also had a large tumor about the size of a lemon in my calf muscle. I had asked the oncologist about a possible resection of that tumor since it was isolated and accessible. I thought his answer was a bit bizarre when he said he wanted to leave it because it was so easily palpable and he could assess my response to therapy by checking it regularly. My other tumors (lungs, spine, neck) could only be seen/tracked on imaging studies. The leg tumor, which had been hard as a rock, started to soften at 2-3 weeks, about the same time my pulmonary symptoms of shortness of breath and coughing started to resolve. The "softening" of the tumors continued until by about 10 weeks into the trial, when they had completely resolved with only a little residual soreness in my leg. A 12 week CT/PET showed resolution of all tumors with just some lucency in the bones where tumors had been. Even this normalized over the next 3 months and I continue to be NED.

Here's hoping a similar experience for you…

DVD

Josh –

When I started in the combi ipi/nivo trial (Jan 7, 2014) I had about a dozen sub-q lesions on my scalp, all hard and about the size of a pea. The first change I noticed was in about 2 weeks when they became a bit more inflamed (sore) and started to soften up. I also had a large tumor about the size of a lemon in my calf muscle. I had asked the oncologist about a possible resection of that tumor since it was isolated and accessible. I thought his answer was a bit bizarre when he said he wanted to leave it because it was so easily palpable and he could assess my response to therapy by checking it regularly. My other tumors (lungs, spine, neck) could only be seen/tracked on imaging studies. The leg tumor, which had been hard as a rock, started to soften at 2-3 weeks, about the same time my pulmonary symptoms of shortness of breath and coughing started to resolve. The "softening" of the tumors continued until by about 10 weeks into the trial, when they had completely resolved with only a little residual soreness in my leg. A 12 week CT/PET showed resolution of all tumors with just some lucency in the bones where tumors had been. Even this normalized over the next 3 months and I continue to be NED.

Here's hoping a similar experience for you…

DVD

Hi Josh, 

so glad treatment is working Hun. When I was on ippi I notice subs seemed to get bigger but after second dose started to go down. 

So pleased for you xx

scooby123

Hi Josh, 

so glad treatment is working Hun. When I was on ippi I notice subs seemed to get bigger but after second dose started to go down. 

So pleased for you xx

scooby123

Hi Josh, 

so glad treatment is working Hun. When I was on ippi I notice subs seemed to get bigger but after second dose started to go down. 

So pleased for you xx

scooby123

Josh,  I have absolutely nothing of help to offer.  I just wanted to say how nice it is to see a post from you that feels upbeat.  You can and will beat this beast!!

Josh,  I have absolutely nothing of help to offer.  I just wanted to say how nice it is to see a post from you that feels upbeat.  You can and will beat this beast!!

Josh,  I have absolutely nothing of help to offer.  I just wanted to say how nice it is to see a post from you that feels upbeat.  You can and will beat this beast!!

Hey Josh,

Great to hear from you and glad something seems to be happening with your treatment.  I have had chronic sub-q's over the almost four years since diagnosis.  My first drug therapy, BRAF inhibitor Zelboraf (vemurafenib) attacked the tumors with blinding speed, shrinking was noticeable within days.  Unfortunately success was short-lived.  I have been a non-responder to almost everything since, and needed radiation to destroy three, large sub-q's that were really causing problems in my life.  I would add that it seems not all tumors are created equal, even within the individual, as I have had a range of results from total destruction, now imperceptible on scans, to one that never went away completely, and started to grow back, and another that shrunk to the size of a peanut but is likely necrotic tissue. Mel refuses to follow any set of rules.  Best to you as always.

Gary

Hey Josh,

Great to hear from you and glad something seems to be happening with your treatment.  I have had chronic sub-q's over the almost four years since diagnosis.  My first drug therapy, BRAF inhibitor Zelboraf (vemurafenib) attacked the tumors with blinding speed, shrinking was noticeable within days.  Unfortunately success was short-lived.  I have been a non-responder to almost everything since, and needed radiation to destroy three, large sub-q's that were really causing problems in my life.  I would add that it seems not all tumors are created equal, even within the individual, as I have had a range of results from total destruction, now imperceptible on scans, to one that never went away completely, and started to grow back, and another that shrunk to the size of a peanut but is likely necrotic tissue. Mel refuses to follow any set of rules.  Best to you as always.

Gary

Hey Josh,

Great to hear from you and glad something seems to be happening with your treatment.  I have had chronic sub-q's over the almost four years since diagnosis.  My first drug therapy, BRAF inhibitor Zelboraf (vemurafenib) attacked the tumors with blinding speed, shrinking was noticeable within days.  Unfortunately success was short-lived.  I have been a non-responder to almost everything since, and needed radiation to destroy three, large sub-q's that were really causing problems in my life.  I would add that it seems not all tumors are created equal, even within the individual, as I have had a range of results from total destruction, now imperceptible on scans, to one that never went away completely, and started to grow back, and another that shrunk to the size of a peanut but is likely necrotic tissue. Mel refuses to follow any set of rules.  Best to you as always.

Gary

Hi Josh-

I obviously have nothing to add as far as experience.  I just wanted to say hang in there, it sounds like things are working in your favor, even if slow.  I myself am a cancer survivor and know the battle within, one day your on an upswing and the next not so much.  The battle is tough, but it can be fought and you are a WARRIOR!

🙂

Hi Josh-

I obviously have nothing to add as far as experience.  I just wanted to say hang in there, it sounds like things are working in your favor, even if slow.  I myself am a cancer survivor and know the battle within, one day your on an upswing and the next not so much.  The battle is tough, but it can be fought and you are a WARRIOR!

🙂

Hi Josh-

I obviously have nothing to add as far as experience.  I just wanted to say hang in there, it sounds like things are working in your favor, even if slow.  I myself am a cancer survivor and know the battle within, one day your on an upswing and the next not so much.  The battle is tough, but it can be fought and you are a WARRIOR!

🙂

Hi Josh,

Thanks for asking this question.  I've been thinking of posting this type of question the last few days.  I was curious what other people that had responded had experienced too. I've just had my third Opdivo infusion so am hoping to notice some response myself.  Best wishes with your treatment!  

Christal

Hi Josh,

Thanks for asking this question.  I've been thinking of posting this type of question the last few days.  I was curious what other people that had responded had experienced too. I've just had my third Opdivo infusion so am hoping to notice some response myself.  Best wishes with your treatment!  

Christal

Hi Josh,

Thanks for asking this question.  I've been thinking of posting this type of question the last few days.  I was curious what other people that had responded had experienced too. I've just had my third Opdivo infusion so am hoping to notice some response myself.  Best wishes with your treatment!  

Christal

Hey Joshie,

Glad to hear that palpable sub-q's are shrinking.  I think lots of folks have experienced slight enlargement/tenderness in tumors before they go away!!  Can't give you any personal experience…or even data in your study!  You're the man!!  Too far on the front lines for the rest of us.  Just wanted to say:  You're one awesome rattie!!!  Hang in there!  c

Hey Joshie,

Glad to hear that palpable sub-q's are shrinking.  I think lots of folks have experienced slight enlargement/tenderness in tumors before they go away!!  Can't give you any personal experience…or even data in your study!  You're the man!!  Too far on the front lines for the rest of us.  Just wanted to say:  You're one awesome rattie!!!  Hang in there!  c

Hey Joshie,

Glad to hear that palpable sub-q's are shrinking.  I think lots of folks have experienced slight enlargement/tenderness in tumors before they go away!!  Can't give you any personal experience…or even data in your study!  You're the man!!  Too far on the front lines for the rest of us.  Just wanted to say:  You're one awesome rattie!!!  Hang in there!  c

Hey Josh! 

I'm so glad to hear it sounds like you're responding! You are a great resource on this board – through your responses and through sharing your story. 

I was on the Ipi/Nivo trial starting 3/6/15. TWELVE  HOURS after the conclusion of my first infusion my sub-q's (chest/back) doubled in size and were red/hot. Within weeks, probably 2-4, they shrunk smaller than their original size. It took about 2.5 months until I could no longer feel them. They were gone on my 3 month scans; those scans also indicated 95% tumor reduction on my liver and no evidence of a former tumor on my spine. In November 2015, 9 months after my first infusion, I received NED status. 

Best of luck,

Ashley

Hey Josh! 

I'm so glad to hear it sounds like you're responding! You are a great resource on this board – through your responses and through sharing your story. 

I was on the Ipi/Nivo trial starting 3/6/15. TWELVE  HOURS after the conclusion of my first infusion my sub-q's (chest/back) doubled in size and were red/hot. Within weeks, probably 2-4, they shrunk smaller than their original size. It took about 2.5 months until I could no longer feel them. They were gone on my 3 month scans; those scans also indicated 95% tumor reduction on my liver and no evidence of a former tumor on my spine. In November 2015, 9 months after my first infusion, I received NED status. 

Best of luck,

Ashley

Hey Josh! 

I'm so glad to hear it sounds like you're responding! You are a great resource on this board – through your responses and through sharing your story. 

I was on the Ipi/Nivo trial starting 3/6/15. TWELVE  HOURS after the conclusion of my first infusion my sub-q's (chest/back) doubled in size and were red/hot. Within weeks, probably 2-4, they shrunk smaller than their original size. It took about 2.5 months until I could no longer feel them. They were gone on my 3 month scans; those scans also indicated 95% tumor reduction on my liver and no evidence of a former tumor on my spine. In November 2015, 9 months after my first infusion, I received NED status. 

Best of luck,

Ashley