Combo treatment

Ipi/Nivo combo has the highest effectiveness rate of all the approved treatments, so it sounds like you've got a good doctor that wants to get you on a good treatment.

Side effects are not a given. Not everyone gets the same side effects and not everyone gets scary or severe side effects. You won't know until you start treatment how your body will react. Just remember to keep your doctor informed immediately if anything comes up. The sooner they know about a side effect that needs treating, then the sooner they can treat it before it becomes something scary.

I will have my 4th infusion of Ipi/Nivo on Thursday, for me I have only been dealing with itchy skin, eczema flare ups (I already had it prior to treatment), joint pain, and some nausea and loss of appetite here and there.

Sorry you've had to be a part of this "club", but I hope this forum can be of help to you.

All the best,

Ipi/Nivo combo has the highest effectiveness rate of all the approved treatments, so it sounds like you've got a good doctor that wants to get you on a good treatment.

Side effects are not a given. Not everyone gets the same side effects and not everyone gets scary or severe side effects. You won't know until you start treatment how your body will react. Just remember to keep your doctor informed immediately if anything comes up. The sooner they know about a side effect that needs treating, then the sooner they can treat it before it becomes something scary.

I will have my 4th infusion of Ipi/Nivo on Thursday, for me I have only been dealing with itchy skin, eczema flare ups (I already had it prior to treatment), joint pain, and some nausea and loss of appetite here and there.

Sorry you've had to be a part of this "club", but I hope this forum can be of help to you.

All the best,

Ipi/Nivo combo has the highest effectiveness rate of all the approved treatments, so it sounds like you've got a good doctor that wants to get you on a good treatment.

Side effects are not a given. Not everyone gets the same side effects and not everyone gets scary or severe side effects. You won't know until you start treatment how your body will react. Just remember to keep your doctor informed immediately if anything comes up. The sooner they know about a side effect that needs treating, then the sooner they can treat it before it becomes something scary.

I will have my 4th infusion of Ipi/Nivo on Thursday, for me I have only been dealing with itchy skin, eczema flare ups (I already had it prior to treatment), joint pain, and some nausea and loss of appetite here and there.

Sorry you've had to be a part of this "club", but I hope this forum can be of help to you.

All the best,

Hi,

I was diagnosed stage 4 early Oct. Like you I was offered IPI nivo or Keytruda. I am a Braf wild type and the combo offered the best statistical chance of response … At the cost of worse side effects. Like Jenn I had little problems initially, apart from loss of appetite and nausea. Infusion 3 was delayed as liver enzymes spiked and am. currently on day 14 of steroids ( 3_4 day monitoring ) . levels have peaked at under 5 times upper limit of normal. Expect to be started on steroid taper on Wed and to get next treatment soon.

Not regretting the choice so far _ scan at the end of Jan should tell us more.

Have taken probiotics to help the gut flora on treatment and to try to minimise Castro issues. Mice studies seem topoint to this helping. Feel better thank have done in months on the steroids and they seem to have fixed nausea and appetite issues for now.

Everyone's pathway on these drugs is slightly different. I suspect I got liver issues as this is where. My stage 4 disease is lurking. You might sail through it, or you may have problems that require management but as the knowledge base is growing the docs are getting better at stepping in early and treating side effects quickly as they know more what to expect. The list of potential problems is long and scary but so is the prospect of no treatment. The combo is the first go to if you are deemed to be robust enough to handle problems if and when they arise statistically speaking and if things flare up badly in the first 12 weeks you can drop the IPI bit and continue on the pd1 drug which was probably the second choice anyway. Nothing ventured, nothing gained and all that…

Best of wishes,

Deb

Hi,

I was diagnosed stage 4 early Oct. Like you I was offered IPI nivo or Keytruda. I am a Braf wild type and the combo offered the best statistical chance of response … At the cost of worse side effects. Like Jenn I had little problems initially, apart from loss of appetite and nausea. Infusion 3 was delayed as liver enzymes spiked and am. currently on day 14 of steroids ( 3_4 day monitoring ) . levels have peaked at under 5 times upper limit of normal. Expect to be started on steroid taper on Wed and to get next treatment soon.

Not regretting the choice so far _ scan at the end of Jan should tell us more.

Have taken probiotics to help the gut flora on treatment and to try to minimise Castro issues. Mice studies seem topoint to this helping. Feel better thank have done in months on the steroids and they seem to have fixed nausea and appetite issues for now.

Everyone's pathway on these drugs is slightly different. I suspect I got liver issues as this is where. My stage 4 disease is lurking. You might sail through it, or you may have problems that require management but as the knowledge base is growing the docs are getting better at stepping in early and treating side effects quickly as they know more what to expect. The list of potential problems is long and scary but so is the prospect of no treatment. The combo is the first go to if you are deemed to be robust enough to handle problems if and when they arise statistically speaking and if things flare up badly in the first 12 weeks you can drop the IPI bit and continue on the pd1 drug which was probably the second choice anyway. Nothing ventured, nothing gained and all that…

Best of wishes,

Deb

Hi,

I was diagnosed stage 4 early Oct. Like you I was offered IPI nivo or Keytruda. I am a Braf wild type and the combo offered the best statistical chance of response … At the cost of worse side effects. Like Jenn I had little problems initially, apart from loss of appetite and nausea. Infusion 3 was delayed as liver enzymes spiked and am. currently on day 14 of steroids ( 3_4 day monitoring ) . levels have peaked at under 5 times upper limit of normal. Expect to be started on steroid taper on Wed and to get next treatment soon.

Not regretting the choice so far _ scan at the end of Jan should tell us more.

Have taken probiotics to help the gut flora on treatment and to try to minimise Castro issues. Mice studies seem topoint to this helping. Feel better thank have done in months on the steroids and they seem to have fixed nausea and appetite issues for now.

Everyone's pathway on these drugs is slightly different. I suspect I got liver issues as this is where. My stage 4 disease is lurking. You might sail through it, or you may have problems that require management but as the knowledge base is growing the docs are getting better at stepping in early and treating side effects quickly as they know more what to expect. The list of potential problems is long and scary but so is the prospect of no treatment. The combo is the first go to if you are deemed to be robust enough to handle problems if and when they arise statistically speaking and if things flare up badly in the first 12 weeks you can drop the IPI bit and continue on the pd1 drug which was probably the second choice anyway. Nothing ventured, nothing gained and all that…

Best of wishes,

Deb

Hi,

I was diagnosed stage 4 early Oct. Like you I was offered IPI nivo or Keytruda. I am a Braf wild type and the combo offered the best statistical chance of response … At the cost of worse side effects. Like Jenn I had little problems initially, apart from loss of appetite and nausea. Infusion 3 was delayed as liver enzymes spiked and am. currently on day 14 of steroids ( 3_4 day monitoring ) . levels have peaked at under 5 times upper limit of normal. Expect to be started on steroid taper on Wed and to get next treatment soon.

Not regretting the choice so far _ scan at the end of Jan should tell us more.

Have taken probiotics to help the gut flora on treatment and to try to minimise Castro issues. Mice studies seem topoint to this helping. Feel better thank have done in months on the steroids and they seem to have fixed nausea and appetite issues for now.

Everyone's pathway on these drugs is slightly different. I suspect I got liver issues as this is where. My stage 4 disease is lurking. You might sail through it, or you may have problems that require management but as the knowledge base is growing the docs are getting better at stepping in early and treating side effects quickly as they know more what to expect. The list of potential problems is long and scary but so is the prospect of no treatment. The combo is the first go to if you are deemed to be robust enough to handle problems if and when they arise statistically speaking and if things flare up badly in the first 12 weeks you can drop the IPI bit and continue on the pd1 drug which was probably the second choice anyway. Nothing ventured, nothing gained and all that…

Best of wishes,

Deb

Hi,

I was diagnosed stage 4 early Oct. Like you I was offered IPI nivo or Keytruda. I am a Braf wild type and the combo offered the best statistical chance of response … At the cost of worse side effects. Like Jenn I had little problems initially, apart from loss of appetite and nausea. Infusion 3 was delayed as liver enzymes spiked and am. currently on day 14 of steroids ( 3_4 day monitoring ) . levels have peaked at under 5 times upper limit of normal. Expect to be started on steroid taper on Wed and to get next treatment soon.

Not regretting the choice so far _ scan at the end of Jan should tell us more.

Have taken probiotics to help the gut flora on treatment and to try to minimise Castro issues. Mice studies seem topoint to this helping. Feel better thank have done in months on the steroids and they seem to have fixed nausea and appetite issues for now.

Everyone's pathway on these drugs is slightly different. I suspect I got liver issues as this is where. My stage 4 disease is lurking. You might sail through it, or you may have problems that require management but as the knowledge base is growing the docs are getting better at stepping in early and treating side effects quickly as they know more what to expect. The list of potential problems is long and scary but so is the prospect of no treatment. The combo is the first go to if you are deemed to be robust enough to handle problems if and when they arise statistically speaking and if things flare up badly in the first 12 weeks you can drop the IPI bit and continue on the pd1 drug which was probably the second choice anyway. Nothing ventured, nothing gained and all that…

Best of wishes,

Deb

Hi,

I was diagnosed stage 4 early Oct. Like you I was offered IPI nivo or Keytruda. I am a Braf wild type and the combo offered the best statistical chance of response … At the cost of worse side effects. Like Jenn I had little problems initially, apart from loss of appetite and nausea. Infusion 3 was delayed as liver enzymes spiked and am. currently on day 14 of steroids ( 3_4 day monitoring ) . levels have peaked at under 5 times upper limit of normal. Expect to be started on steroid taper on Wed and to get next treatment soon.

Not regretting the choice so far _ scan at the end of Jan should tell us more.

Have taken probiotics to help the gut flora on treatment and to try to minimise Castro issues. Mice studies seem topoint to this helping. Feel better thank have done in months on the steroids and they seem to have fixed nausea and appetite issues for now.

Everyone's pathway on these drugs is slightly different. I suspect I got liver issues as this is where. My stage 4 disease is lurking. You might sail through it, or you may have problems that require management but as the knowledge base is growing the docs are getting better at stepping in early and treating side effects quickly as they know more what to expect. The list of potential problems is long and scary but so is the prospect of no treatment. The combo is the first go to if you are deemed to be robust enough to handle problems if and when they arise statistically speaking and if things flare up badly in the first 12 weeks you can drop the IPI bit and continue on the pd1 drug which was probably the second choice anyway. Nothing ventured, nothing gained and all that…

Best of wishes,

Deb

I have my first treatment on January 5th.  I am with you on the fear of what is to come, but the monster we are up against is tough to kill.  Once you work your way through all the mental aspects of this diagnosis, you will find the urge to fight welling up inside you.  I have read about it on here for months and have been experiencing it for myself the past week and a half.  The combo is the best option we have for success.  In my opinion, choosing it is a no brainer regardless of side-effects.  Side-effects can be managed, but the cancer is a different story.  I pray for you to find peace and strength as you journey down this road. 

Brad

I have my first treatment on January 5th.  I am with you on the fear of what is to come, but the monster we are up against is tough to kill.  Once you work your way through all the mental aspects of this diagnosis, you will find the urge to fight welling up inside you.  I have read about it on here for months and have been experiencing it for myself the past week and a half.  The combo is the best option we have for success.  In my opinion, choosing it is a no brainer regardless of side-effects.  Side-effects can be managed, but the cancer is a different story.  I pray for you to find peace and strength as you journey down this road. 

Brad

I have my first treatment on January 5th.  I am with you on the fear of what is to come, but the monster we are up against is tough to kill.  Once you work your way through all the mental aspects of this diagnosis, you will find the urge to fight welling up inside you.  I have read about it on here for months and have been experiencing it for myself the past week and a half.  The combo is the best option we have for success.  In my opinion, choosing it is a no brainer regardless of side-effects.  Side-effects can be managed, but the cancer is a different story.  I pray for you to find peace and strength as you journey down this road. 

Brad

I started the combo in July, had the 4 doses at 3 weeks apart, then just opdivo 4 doses 3 weeks apart and last friday back to the combo at every 90 days for maintanance. I have had at least 1 side effect since the 2nd week after the first dose. These are the side effects I have had:

1. Rash – developed on arms and chest second week. Still have some rash but never itched or burned except 2 or 3 bumps only.

2. Fatigue, loss of appetite – second week, lasted about 5 weeks

3. Fever – started after the second dose and ran non-stop for 6 to 7 weeks

4. Dry mouth/thick silava – started around the 4th dose of combo, lasted about 11 weeks

5. insomnia – started after 2nd single dose of opdivo, lasted about a week

6. Vitiligo – started just after 4th combo, still developing (research shows this is a good thing)

7. Thyroid gone – The last month I have been very tired and gaining weight. Found out friday my thyroid gland has had it so now on hormones.

To me none of these have been show stoppers as I have continued to work and do normal things. You will find ways to work around the side effects. The way I view side effects is that they are a welcomed thing as it tells me my immune system is still reacting to the drugs. I have another scan on thursday. I started with 7 mets in my lungs. At 14 weeks 3 were either gone or to small to tell, 2 were down to 2mm and 2.5 mm and the other 2 were down to 1cm from 1.4 and 1.5. Of course side effects vary depends on the dose of the drugs but when I was diagnosed I wanted the combo and the sdie effects didn't matter to me. I don't know if there is any way to fight melanoma without some risk of side effects. Whatever you choose I hope it works for you.

I started the combo in July, had the 4 doses at 3 weeks apart, then just opdivo 4 doses 3 weeks apart and last friday back to the combo at every 90 days for maintanance. I have had at least 1 side effect since the 2nd week after the first dose. These are the side effects I have had:

1. Rash – developed on arms and chest second week. Still have some rash but never itched or burned except 2 or 3 bumps only.

2. Fatigue, loss of appetite – second week, lasted about 5 weeks

3. Fever – started after the second dose and ran non-stop for 6 to 7 weeks

4. Dry mouth/thick silava – started around the 4th dose of combo, lasted about 11 weeks

5. insomnia – started after 2nd single dose of opdivo, lasted about a week

6. Vitiligo – started just after 4th combo, still developing (research shows this is a good thing)

7. Thyroid gone – The last month I have been very tired and gaining weight. Found out friday my thyroid gland has had it so now on hormones.

To me none of these have been show stoppers as I have continued to work and do normal things. You will find ways to work around the side effects. The way I view side effects is that they are a welcomed thing as it tells me my immune system is still reacting to the drugs. I have another scan on thursday. I started with 7 mets in my lungs. At 14 weeks 3 were either gone or to small to tell, 2 were down to 2mm and 2.5 mm and the other 2 were down to 1cm from 1.4 and 1.5. Of course side effects vary depends on the dose of the drugs but when I was diagnosed I wanted the combo and the sdie effects didn't matter to me. I don't know if there is any way to fight melanoma without some risk of side effects. Whatever you choose I hope it works for you.

I started the combo in July, had the 4 doses at 3 weeks apart, then just opdivo 4 doses 3 weeks apart and last friday back to the combo at every 90 days for maintanance. I have had at least 1 side effect since the 2nd week after the first dose. These are the side effects I have had:

1. Rash – developed on arms and chest second week. Still have some rash but never itched or burned except 2 or 3 bumps only.

2. Fatigue, loss of appetite – second week, lasted about 5 weeks

3. Fever – started after the second dose and ran non-stop for 6 to 7 weeks

4. Dry mouth/thick silava – started around the 4th dose of combo, lasted about 11 weeks

5. insomnia – started after 2nd single dose of opdivo, lasted about a week

6. Vitiligo – started just after 4th combo, still developing (research shows this is a good thing)

7. Thyroid gone – The last month I have been very tired and gaining weight. Found out friday my thyroid gland has had it so now on hormones.

To me none of these have been show stoppers as I have continued to work and do normal things. You will find ways to work around the side effects. The way I view side effects is that they are a welcomed thing as it tells me my immune system is still reacting to the drugs. I have another scan on thursday. I started with 7 mets in my lungs. At 14 weeks 3 were either gone or to small to tell, 2 were down to 2mm and 2.5 mm and the other 2 were down to 1cm from 1.4 and 1.5. Of course side effects vary depends on the dose of the drugs but when I was diagnosed I wanted the combo and the sdie effects didn't matter to me. I don't know if there is any way to fight melanoma without some risk of side effects. Whatever you choose I hope it works for you.