Started ipi/nivo yesterday

Happy to hear that you found a great doc. That is a big piece of the puzzle… mentally as well as physically, because one will affect the other. Everyone responds differently to immunotherapy. Sure, there are the general statistics for side effects, but until your own body gets a taste of the drugs, it's really difficult to tell. I have a 72 year old male friend who got colitis from Ipi, and it did NOTHING to me (45 at the time and F). His side effects from Keytruda were fairly minimal, and he made it through 24 months of treatment… still currently NED and now 74. : )  I made it through 20 months of Keytruda and developed mild pancreatitis and inflammatory arthritis issues at around 18 months in… but am also NED. 

If you are a complete responder, it is possible that the 3.8 cm lesion in your lung will go away entirely. It's also possible that it may appear to "grow" at first, and may never entirely disappear, but could become stable… or may even leave behind a little remainder of scar tissue. 

Purely from my personal experience, it took 3 months for the remaining 1.2 cm lung lesion to completely disappear from scans.That was Keytruda as a single agent, and I started that about 16 months after completion of Ipi. 

The best thing you can do is pay attention to what your body is doing. Report anything odd or changing to your doc as soon as possible, so IF… IF you have a strong autoimmune reaction, they can handle it before things go too far south. Best wishes for smooth sailing, and some rapid "bye bye" to the spare melameat!

Happy to hear that you found a great doc. That is a big piece of the puzzle… mentally as well as physically, because one will affect the other. Everyone responds differently to immunotherapy. Sure, there are the general statistics for side effects, but until your own body gets a taste of the drugs, it's really difficult to tell. I have a 72 year old male friend who got colitis from Ipi, and it did NOTHING to me (45 at the time and F). His side effects from Keytruda were fairly minimal, and he made it through 24 months of treatment… still currently NED and now 74. : )  I made it through 20 months of Keytruda and developed mild pancreatitis and inflammatory arthritis issues at around 18 months in… but am also NED. 

If you are a complete responder, it is possible that the 3.8 cm lesion in your lung will go away entirely. It's also possible that it may appear to "grow" at first, and may never entirely disappear, but could become stable… or may even leave behind a little remainder of scar tissue. 

Purely from my personal experience, it took 3 months for the remaining 1.2 cm lung lesion to completely disappear from scans.That was Keytruda as a single agent, and I started that about 16 months after completion of Ipi. 

The best thing you can do is pay attention to what your body is doing. Report anything odd or changing to your doc as soon as possible, so IF… IF you have a strong autoimmune reaction, they can handle it before things go too far south. Best wishes for smooth sailing, and some rapid "bye bye" to the spare melameat!

Happy to hear that you found a great doc. That is a big piece of the puzzle… mentally as well as physically, because one will affect the other. Everyone responds differently to immunotherapy. Sure, there are the general statistics for side effects, but until your own body gets a taste of the drugs, it's really difficult to tell. I have a 72 year old male friend who got colitis from Ipi, and it did NOTHING to me (45 at the time and F). His side effects from Keytruda were fairly minimal, and he made it through 24 months of treatment… still currently NED and now 74. : )  I made it through 20 months of Keytruda and developed mild pancreatitis and inflammatory arthritis issues at around 18 months in… but am also NED. 

If you are a complete responder, it is possible that the 3.8 cm lesion in your lung will go away entirely. It's also possible that it may appear to "grow" at first, and may never entirely disappear, but could become stable… or may even leave behind a little remainder of scar tissue. 

Purely from my personal experience, it took 3 months for the remaining 1.2 cm lung lesion to completely disappear from scans.That was Keytruda as a single agent, and I started that about 16 months after completion of Ipi. 

The best thing you can do is pay attention to what your body is doing. Report anything odd or changing to your doc as soon as possible, so IF… IF you have a strong autoimmune reaction, they can handle it before things go too far south. Best wishes for smooth sailing, and some rapid "bye bye" to the spare melameat!

I am 29, I did Ipi alone for a while, now on Ipi/Nivo, have had mild side effects, nothing major or scary has come up in the year I have been on treatment. But, I don't think age really matters, everyone reacts differently to these drugs. I have heard of other younger patients get a serious side effects after 1 infusion, and others like myself don't deal with much other than fatigue and joint pain. It's going to be totally personal for your body. Just remember to tell your onc right away about anything that feels weird or different. The faster they know about something, the quicker they can treat without it becoming too big of a problem. 

Hope it goes well for you and it shrinks that tumor for you! (sorry, don't have time frame info for you on that, it's really very individual with these things)

All the best,

I am 29, I did Ipi alone for a while, now on Ipi/Nivo, have had mild side effects, nothing major or scary has come up in the year I have been on treatment. But, I don't think age really matters, everyone reacts differently to these drugs. I have heard of other younger patients get a serious side effects after 1 infusion, and others like myself don't deal with much other than fatigue and joint pain. It's going to be totally personal for your body. Just remember to tell your onc right away about anything that feels weird or different. The faster they know about something, the quicker they can treat without it becoming too big of a problem. 

Hope it goes well for you and it shrinks that tumor for you! (sorry, don't have time frame info for you on that, it's really very individual with these things)

All the best,

I am 29, I did Ipi alone for a while, now on Ipi/Nivo, have had mild side effects, nothing major or scary has come up in the year I have been on treatment. But, I don't think age really matters, everyone reacts differently to these drugs. I have heard of other younger patients get a serious side effects after 1 infusion, and others like myself don't deal with much other than fatigue and joint pain. It's going to be totally personal for your body. Just remember to tell your onc right away about anything that feels weird or different. The faster they know about something, the quicker they can treat without it becoming too big of a problem. 

Hope it goes well for you and it shrinks that tumor for you! (sorry, don't have time frame info for you on that, it's really very individual with these things)

All the best,

Hi Nick,

Ipi nivo seems to have common side effects that turn up in a generally predictable sequence but who gets them is not very predictable. The effects seem to build up over the four infusions…and lots of folk seem to have to miss one or more infusions  BUT the thing to remember is the drugs are being used to put the immune system on red alert and this may happen on less doses for some individuals– but even if you don't have the full four doses you can still expect benefit. .. and don't under report side effects as this could be damaging to your body if you have a dose that takes things "Over the Edge "

Apart from fatigue, loss of appetite the high frequency ones seem to on average set in in the following order-   rash, nausea/ diahorea, endocrine, joint pain etc will see if I can find you a slide share presentation in a mo. http://slideplayer.com/slide/10812486/

Other things that might help- keep your skin well moisturised (Minimize Rash ) , consider a probiotic like BIOKULT- good gut bacteria seems to help the immunotherapy work in mice studies and it might help reduce gastro problems. Consider supplementing VIT D. too. and maybe some omega 3 fish oil as a natural anti inflammatory in case of joint syptoms. https://news.uchicago.edu/article/2015/11/06/gut-bacteria-can-dramatically-amplify-cancer-immunotherapy

Yes, as others have said if you are lucky enough to be a complete responder then the lung tumour may disappear … but if it doesn't don't lose hope– sometimes on biopsy they are found to be non malignant remaing cells- which still show up on scans etc Also thetiming of responses variues hugely.

The other thing is that as you are so young your immune system is likely to be primed to launch a successful attack .  Exercise as tolerated seems to be good as well as trying to avoid stress and generally eating a healthy diet — easier typed than done . So , in spite of your docs warning and having had to sign a consent form that listed all sorts of nasties, all I can really add is that this treatment has side effects that are pretty varied and that you are best reporting in if in doubt as thgings like severe headaches or extreme fatigue may prompt your team to test for some of the rarer side effects.

Other big message is – even if you do need to have steroids to calm things down this does not cancel out the therapeutic effects of the combo if you are a responder. I would drink to that for us all tonight but it will have to be an apple juice as my liver is currently complaining about the combo ( Had to miss infusion 3 ) but given my tumours are in the liver and I'm on steroids this will have to do the job. Am hoping for a good result for us all or even a good enough response until the next big advance comes along.

Just had another thought-12-15 weeks is a long time to wait for a scan… but you could also watch for changes in the LDH whichis a biomarker for tumour burden/ tissue damage but like with most things melanoma it can be increased for other reasons  so I would go with how you feel as the maiun thing.

Best wishes for a successful treatment…

Deb

Hi Nick,

Ipi nivo seems to have common side effects that turn up in a generally predictable sequence but who gets them is not very predictable. The effects seem to build up over the four infusions…and lots of folk seem to have to miss one or more infusions  BUT the thing to remember is the drugs are being used to put the immune system on red alert and this may happen on less doses for some individuals– but even if you don't have the full four doses you can still expect benefit. .. and don't under report side effects as this could be damaging to your body if you have a dose that takes things "Over the Edge "

Apart from fatigue, loss of appetite the high frequency ones seem to on average set in in the following order-   rash, nausea/ diahorea, endocrine, joint pain etc will see if I can find you a slide share presentation in a mo. http://slideplayer.com/slide/10812486/

Other things that might help- keep your skin well moisturised (Minimize Rash ) , consider a probiotic like BIOKULT- good gut bacteria seems to help the immunotherapy work in mice studies and it might help reduce gastro problems. Consider supplementing VIT D. too. and maybe some omega 3 fish oil as a natural anti inflammatory in case of joint syptoms. https://news.uchicago.edu/article/2015/11/06/gut-bacteria-can-dramatically-amplify-cancer-immunotherapy

Yes, as others have said if you are lucky enough to be a complete responder then the lung tumour may disappear … but if it doesn't don't lose hope– sometimes on biopsy they are found to be non malignant remaing cells- which still show up on scans etc Also thetiming of responses variues hugely.

The other thing is that as you are so young your immune system is likely to be primed to launch a successful attack .  Exercise as tolerated seems to be good as well as trying to avoid stress and generally eating a healthy diet — easier typed than done . So , in spite of your docs warning and having had to sign a consent form that listed all sorts of nasties, all I can really add is that this treatment has side effects that are pretty varied and that you are best reporting in if in doubt as thgings like severe headaches or extreme fatigue may prompt your team to test for some of the rarer side effects.

Other big message is – even if you do need to have steroids to calm things down this does not cancel out the therapeutic effects of the combo if you are a responder. I would drink to that for us all tonight but it will have to be an apple juice as my liver is currently complaining about the combo ( Had to miss infusion 3 ) but given my tumours are in the liver and I'm on steroids this will have to do the job. Am hoping for a good result for us all or even a good enough response until the next big advance comes along.

Just had another thought-12-15 weeks is a long time to wait for a scan… but you could also watch for changes in the LDH whichis a biomarker for tumour burden/ tissue damage but like with most things melanoma it can be increased for other reasons  so I would go with how you feel as the maiun thing.

Best wishes for a successful treatment…

Deb

Hi Nick,

Ipi nivo seems to have common side effects that turn up in a generally predictable sequence but who gets them is not very predictable. The effects seem to build up over the four infusions…and lots of folk seem to have to miss one or more infusions  BUT the thing to remember is the drugs are being used to put the immune system on red alert and this may happen on less doses for some individuals– but even if you don't have the full four doses you can still expect benefit. .. and don't under report side effects as this could be damaging to your body if you have a dose that takes things "Over the Edge "

Apart from fatigue, loss of appetite the high frequency ones seem to on average set in in the following order-   rash, nausea/ diahorea, endocrine, joint pain etc will see if I can find you a slide share presentation in a mo. http://slideplayer.com/slide/10812486/

Other things that might help- keep your skin well moisturised (Minimize Rash ) , consider a probiotic like BIOKULT- good gut bacteria seems to help the immunotherapy work in mice studies and it might help reduce gastro problems. Consider supplementing VIT D. too. and maybe some omega 3 fish oil as a natural anti inflammatory in case of joint syptoms. https://news.uchicago.edu/article/2015/11/06/gut-bacteria-can-dramatically-amplify-cancer-immunotherapy

Yes, as others have said if you are lucky enough to be a complete responder then the lung tumour may disappear … but if it doesn't don't lose hope– sometimes on biopsy they are found to be non malignant remaing cells- which still show up on scans etc Also thetiming of responses variues hugely.

The other thing is that as you are so young your immune system is likely to be primed to launch a successful attack .  Exercise as tolerated seems to be good as well as trying to avoid stress and generally eating a healthy diet — easier typed than done . So , in spite of your docs warning and having had to sign a consent form that listed all sorts of nasties, all I can really add is that this treatment has side effects that are pretty varied and that you are best reporting in if in doubt as thgings like severe headaches or extreme fatigue may prompt your team to test for some of the rarer side effects.

Other big message is – even if you do need to have steroids to calm things down this does not cancel out the therapeutic effects of the combo if you are a responder. I would drink to that for us all tonight but it will have to be an apple juice as my liver is currently complaining about the combo ( Had to miss infusion 3 ) but given my tumours are in the liver and I'm on steroids this will have to do the job. Am hoping for a good result for us all or even a good enough response until the next big advance comes along.

Just had another thought-12-15 weeks is a long time to wait for a scan… but you could also watch for changes in the LDH whichis a biomarker for tumour burden/ tissue damage but like with most things melanoma it can be increased for other reasons  so I would go with how you feel as the maiun thing.

Best wishes for a successful treatment…

Deb

I am 35 and had only one dose of ipi before I was put on hold for insurance issues. A month later I developed a headache similar to a hangover that lasted 2 weeks. An MRI revealed my pituitary gland was swollen and some high dose steroids relieved my headache pretty quickly. I am now hormone deficient, but the pills aren't too difficult to manage. I can't go back on ipi again because they are hoping my pituitary gland will eventually come back, so in a way I'm glad my insurance messed up. 

Like everyone else said, tell your doctor right away when you get unusual symptoms. 

April 

I am 35 and had only one dose of ipi before I was put on hold for insurance issues. A month later I developed a headache similar to a hangover that lasted 2 weeks. An MRI revealed my pituitary gland was swollen and some high dose steroids relieved my headache pretty quickly. I am now hormone deficient, but the pills aren't too difficult to manage. I can't go back on ipi again because they are hoping my pituitary gland will eventually come back, so in a way I'm glad my insurance messed up. 

Like everyone else said, tell your doctor right away when you get unusual symptoms. 

April 

I am 35 and had only one dose of ipi before I was put on hold for insurance issues. A month later I developed a headache similar to a hangover that lasted 2 weeks. An MRI revealed my pituitary gland was swollen and some high dose steroids relieved my headache pretty quickly. I am now hormone deficient, but the pills aren't too difficult to manage. I can't go back on ipi again because they are hoping my pituitary gland will eventually come back, so in a way I'm glad my insurance messed up. 

Like everyone else said, tell your doctor right away when you get unusual symptoms. 

April 

It can go away completely if you are a complete responder. I had an 8 cm lung tumour which got down to 1 cm. It started to grow again after I was off meds for 18 months. We resected it and now I am ned. I had keyhole surgery which is simply amazing, so even if it doesn't disappear completely, it can be resected down the track. You have options. Best of luck with your combo treatment and wishing you plain sailing!

anne-Louise 

It can go away completely if you are a complete responder. I had an 8 cm lung tumour which got down to 1 cm. It started to grow again after I was off meds for 18 months. We resected it and now I am ned. I had keyhole surgery which is simply amazing, so even if it doesn't disappear completely, it can be resected down the track. You have options. Best of luck with your combo treatment and wishing you plain sailing!

anne-Louise 

It can go away completely if you are a complete responder. I had an 8 cm lung tumour which got down to 1 cm. It started to grow again after I was off meds for 18 months. We resected it and now I am ned. I had keyhole surgery which is simply amazing, so even if it doesn't disappear completely, it can be resected down the track. You have options. Best of luck with your combo treatment and wishing you plain sailing!

anne-Louise 

I wish you good luck with your immunotherapy and that your T-cells are all pumped up and doing their job!  I started the ipi/nivo combo today also for lung mets.  Here's hoping that we both have great response.  

Like others have said, be sure to let your doctor know about any new symptoms- don't second guess, just call.  My doctor said let them know even if I think it is insignificant.

Having said that, after a 13 hour day at the cancer center I have a mild headache but I think I'm just exhausted!

Hang in there and know there are people who are friends along the path out here.

Peggy

I wish you good luck with your immunotherapy and that your T-cells are all pumped up and doing their job!  I started the ipi/nivo combo today also for lung mets.  Here's hoping that we both have great response.  

Like others have said, be sure to let your doctor know about any new symptoms- don't second guess, just call.  My doctor said let them know even if I think it is insignificant.

Having said that, after a 13 hour day at the cancer center I have a mild headache but I think I'm just exhausted!

Hang in there and know there are people who are friends along the path out here.

Peggy

I wish you good luck with your immunotherapy and that your T-cells are all pumped up and doing their job!  I started the ipi/nivo combo today also for lung mets.  Here's hoping that we both have great response.  

Like others have said, be sure to let your doctor know about any new symptoms- don't second guess, just call.  My doctor said let them know even if I think it is insignificant.

Having said that, after a 13 hour day at the cancer center I have a mild headache but I think I'm just exhausted!

Hang in there and know there are people who are friends along the path out here.

Peggy