› Forums › General Melanoma Community › Starting ipi/nivo Monday.
- This topic has 30 replies, 5 voices, and was last updated 9 years, 4 months ago by
rjanders.
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- December 31, 2015 at 11:20 pm
Just wondering what to expect for my upcoming ipi/nivo treatments. I have heard some people respond without many side effects and some with quite a few. I was diagnosed 7 years ago with a melanoma mole on my right thigh, removed it surgically with very large margins. 5 years later a lump within the same region showed up. Again, surgery very similiar to the first. At the time interfuron was an option or observation. I decided to observe. 2 years later (now) I had a lump in front of my right ear biopsied and it tested positive for melanoma. A subsiquent PET was done and one other tumor was found in my abdomen under my liver on the messentary wall about the size of a softball. Wow have things changed. Anyone else have any similar situations? Just looking for some info as not much is to be had thus far.
FYI, I was originally supposed to start on a clinical trial a couple weeks ago in Portland Oregon. It was a combonation of Ipi and IL2. Just prior the insurance company denied the treatment and said they do not support clinical trials. It sounded like quite the 1-2 punch but I hope the ipi/nivo takes hold.
Thanks so much for listening. Scott.
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- January 1, 2016 at 2:44 am
Hello Scott, I have been on the ipi nivo treatment for about 9 months. I finished the study component this week. I will continue the nivo treatment under insurance for the duration. The treatment has not been that difficult for me. And the best part is it appears to be working. I have had a lot of the various symptions except for severe colitis. My treatment team has been very proactive in immediately addressing the advers reactions. I suspended treatment one time due to liver issues but steriod treatment cleared up the concerns very quickly. I'm 62 and have staid active and working. It's the best way for me to feel better. I was in portland last week. And on mt hood enjoying the recent snow. Nice I live in NYC So it was nice to have a little normal weather The best to you Chris
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- January 1, 2016 at 2:44 am
Hello Scott, I have been on the ipi nivo treatment for about 9 months. I finished the study component this week. I will continue the nivo treatment under insurance for the duration. The treatment has not been that difficult for me. And the best part is it appears to be working. I have had a lot of the various symptions except for severe colitis. My treatment team has been very proactive in immediately addressing the advers reactions. I suspended treatment one time due to liver issues but steriod treatment cleared up the concerns very quickly. I'm 62 and have staid active and working. It's the best way for me to feel better. I was in portland last week. And on mt hood enjoying the recent snow. Nice I live in NYC So it was nice to have a little normal weather The best to you Chris
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- January 1, 2016 at 2:44 am
Hello Scott, I have been on the ipi nivo treatment for about 9 months. I finished the study component this week. I will continue the nivo treatment under insurance for the duration. The treatment has not been that difficult for me. And the best part is it appears to be working. I have had a lot of the various symptions except for severe colitis. My treatment team has been very proactive in immediately addressing the advers reactions. I suspended treatment one time due to liver issues but steriod treatment cleared up the concerns very quickly. I'm 62 and have staid active and working. It's the best way for me to feel better. I was in portland last week. And on mt hood enjoying the recent snow. Nice I live in NYC So it was nice to have a little normal weather The best to you Chris
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- January 1, 2016 at 8:26 pm
Thanks Chris,
Glad to hear things are going well for you and that you got to Mt. Hood. I am in Central Oregon about 2.5 hours from the mountain. I am 57 and also stay active and hope I have the kind of success you have had with the side effects of treatment. My treatment is 4 infusions of the combination at 3 weeks apart and nivo alone to follow as needed. Best to you in the coming year. Scott
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- January 1, 2016 at 8:26 pm
Thanks Chris,
Glad to hear things are going well for you and that you got to Mt. Hood. I am in Central Oregon about 2.5 hours from the mountain. I am 57 and also stay active and hope I have the kind of success you have had with the side effects of treatment. My treatment is 4 infusions of the combination at 3 weeks apart and nivo alone to follow as needed. Best to you in the coming year. Scott
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- January 1, 2016 at 8:26 pm
Thanks Chris,
Glad to hear things are going well for you and that you got to Mt. Hood. I am in Central Oregon about 2.5 hours from the mountain. I am 57 and also stay active and hope I have the kind of success you have had with the side effects of treatment. My treatment is 4 infusions of the combination at 3 weeks apart and nivo alone to follow as needed. Best to you in the coming year. Scott
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- January 2, 2016 at 6:27 am
Hi Scott, I'm sorry you are having to deal with this! I am on nivo, and started with ipi and nivo together at the end of February. A little background, I had my first melanoma in 2006, had WLE in back and sentinel node biopsy under both arms, no further treatment. January 2015 discovered in transit met in my back, and scan showed mets in lungs, lymph nodes and mesenteric bowel. Surgery to remove the met in my back, and then started ipi/nivo trial at Hopkins. The combo was pretty toxic for me, and I could only take the one dose of the combo, switched to just nivo after side effects waned and I was off prednisone. I had fevers, vomiting, diarrhea, shortness of breath, fatigue, thinning hair, and hyperthyroidism… Enough to be hospitalized for a week, but the prednisone is what regulated me. I also had peeling hands and feet, and itchiness everywhere. And then hypothyroidism set in, for which I now take Levothyroxine, works fine. The diarrhea stuck around for months but was manageable… I still get a touch of it here and there. My hair grew back, I don't get the fevers or shortness of breath, and now only my hands itch. To be fair, some of these side effects were caused by my new allergy to CT scan contrast… New since starting the trial. I have had some "allergic" reactions to some random things, and I've never had an allergy a day in my life until now. From what I understand, this is not unheard of. Now I get premeditated before scans. All of my side effects, once we understood them, were manageable and I have continued to work full time on my feet and stay active. The best news is that my December scans showed no evidence of disease! Don't be discouraged if you don't make it to all four doses of the combo… Many people only get one, two, or three doses and then move on to just nivo. In fact, they scanned me while I was hospitalized after that first dose, and already showed tumors shrinking! So I hope this helps… Best of luck to you!
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- January 2, 2016 at 6:27 am
Hi Scott, I'm sorry you are having to deal with this! I am on nivo, and started with ipi and nivo together at the end of February. A little background, I had my first melanoma in 2006, had WLE in back and sentinel node biopsy under both arms, no further treatment. January 2015 discovered in transit met in my back, and scan showed mets in lungs, lymph nodes and mesenteric bowel. Surgery to remove the met in my back, and then started ipi/nivo trial at Hopkins. The combo was pretty toxic for me, and I could only take the one dose of the combo, switched to just nivo after side effects waned and I was off prednisone. I had fevers, vomiting, diarrhea, shortness of breath, fatigue, thinning hair, and hyperthyroidism… Enough to be hospitalized for a week, but the prednisone is what regulated me. I also had peeling hands and feet, and itchiness everywhere. And then hypothyroidism set in, for which I now take Levothyroxine, works fine. The diarrhea stuck around for months but was manageable… I still get a touch of it here and there. My hair grew back, I don't get the fevers or shortness of breath, and now only my hands itch. To be fair, some of these side effects were caused by my new allergy to CT scan contrast… New since starting the trial. I have had some "allergic" reactions to some random things, and I've never had an allergy a day in my life until now. From what I understand, this is not unheard of. Now I get premeditated before scans. All of my side effects, once we understood them, were manageable and I have continued to work full time on my feet and stay active. The best news is that my December scans showed no evidence of disease! Don't be discouraged if you don't make it to all four doses of the combo… Many people only get one, two, or three doses and then move on to just nivo. In fact, they scanned me while I was hospitalized after that first dose, and already showed tumors shrinking! So I hope this helps… Best of luck to you!
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- January 2, 2016 at 6:27 am
Hi Scott, I'm sorry you are having to deal with this! I am on nivo, and started with ipi and nivo together at the end of February. A little background, I had my first melanoma in 2006, had WLE in back and sentinel node biopsy under both arms, no further treatment. January 2015 discovered in transit met in my back, and scan showed mets in lungs, lymph nodes and mesenteric bowel. Surgery to remove the met in my back, and then started ipi/nivo trial at Hopkins. The combo was pretty toxic for me, and I could only take the one dose of the combo, switched to just nivo after side effects waned and I was off prednisone. I had fevers, vomiting, diarrhea, shortness of breath, fatigue, thinning hair, and hyperthyroidism… Enough to be hospitalized for a week, but the prednisone is what regulated me. I also had peeling hands and feet, and itchiness everywhere. And then hypothyroidism set in, for which I now take Levothyroxine, works fine. The diarrhea stuck around for months but was manageable… I still get a touch of it here and there. My hair grew back, I don't get the fevers or shortness of breath, and now only my hands itch. To be fair, some of these side effects were caused by my new allergy to CT scan contrast… New since starting the trial. I have had some "allergic" reactions to some random things, and I've never had an allergy a day in my life until now. From what I understand, this is not unheard of. Now I get premeditated before scans. All of my side effects, once we understood them, were manageable and I have continued to work full time on my feet and stay active. The best news is that my December scans showed no evidence of disease! Don't be discouraged if you don't make it to all four doses of the combo… Many people only get one, two, or three doses and then move on to just nivo. In fact, they scanned me while I was hospitalized after that first dose, and already showed tumors shrinking! So I hope this helps… Best of luck to you!
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- January 2, 2016 at 6:35 pm
Glad to hear you are responding and I wish you continued success. It sure sounds like you struggled with treatment at first. Sounds better now though. It seems that what little I have heard, women seem to struggle with side effects more than men. Now I have no basis or facts for that other than just listining to conversations in forums or alike. It would be interesting if there were some kind of study for that. Oh well.
All the best Eileen,
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- January 2, 2016 at 6:35 pm
Glad to hear you are responding and I wish you continued success. It sure sounds like you struggled with treatment at first. Sounds better now though. It seems that what little I have heard, women seem to struggle with side effects more than men. Now I have no basis or facts for that other than just listining to conversations in forums or alike. It would be interesting if there were some kind of study for that. Oh well.
All the best Eileen,
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- January 2, 2016 at 6:35 pm
Glad to hear you are responding and I wish you continued success. It sure sounds like you struggled with treatment at first. Sounds better now though. It seems that what little I have heard, women seem to struggle with side effects more than men. Now I have no basis or facts for that other than just listining to conversations in forums or alike. It would be interesting if there were some kind of study for that. Oh well.
All the best Eileen,
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- January 5, 2016 at 3:17 pm
I posted a few days ago about my most recent scan results (anaonymously – I did not intend that). I received 4 infusions of ipi followed up 13 (so far) infusions ot Pembro. So a different drug and not in combination but subsequent.
For a little history, I have always had dry skin and my hands have been cracked, painful and dry since about 18 (I'm 31 now). Mel found on my toe and had subsequent SNLB and WLND followed by stage 4 diag last december. Mets throughout cheat bone structure (spine, sternum, ribs) and on liver.
Ippi gave me some dry skin and fatigue but that was about it. Scan after Ipi showed some growth but pain from my bone mets was all but gone. Pembro was similar – growth stopped or was extremely mild, still not pain (for first 2 scans).
Ippi can also have delayed responses because some immune systems take a little while to build up steam. About 6-9 months into my total infusion treatment (so 4 ipi infusions and 7-8 Pembro) i began experiencing very dry skin on the bottoms of my feet, in/near ankles and other weird spots. My hands also got more dry and cracked than ever.
Then I had my most recent scan and I went from mild growth (if at all – Drs suspected inflamation) to no metabolic activity or NED.
Personally, I think the Ipi/Nivo trial is much better than Ipi/IL2. However, there's a lot of science behind it that I don't understand and the IL2 trial may have some significant results which may offer even more advanced combinations or ideas. Hang in there
-Justin
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- January 5, 2016 at 3:17 pm
I posted a few days ago about my most recent scan results (anaonymously – I did not intend that). I received 4 infusions of ipi followed up 13 (so far) infusions ot Pembro. So a different drug and not in combination but subsequent.
For a little history, I have always had dry skin and my hands have been cracked, painful and dry since about 18 (I'm 31 now). Mel found on my toe and had subsequent SNLB and WLND followed by stage 4 diag last december. Mets throughout cheat bone structure (spine, sternum, ribs) and on liver.
Ippi gave me some dry skin and fatigue but that was about it. Scan after Ipi showed some growth but pain from my bone mets was all but gone. Pembro was similar – growth stopped or was extremely mild, still not pain (for first 2 scans).
Ippi can also have delayed responses because some immune systems take a little while to build up steam. About 6-9 months into my total infusion treatment (so 4 ipi infusions and 7-8 Pembro) i began experiencing very dry skin on the bottoms of my feet, in/near ankles and other weird spots. My hands also got more dry and cracked than ever.
Then I had my most recent scan and I went from mild growth (if at all – Drs suspected inflamation) to no metabolic activity or NED.
Personally, I think the Ipi/Nivo trial is much better than Ipi/IL2. However, there's a lot of science behind it that I don't understand and the IL2 trial may have some significant results which may offer even more advanced combinations or ideas. Hang in there
-Justin
-
- January 5, 2016 at 3:17 pm
I posted a few days ago about my most recent scan results (anaonymously – I did not intend that). I received 4 infusions of ipi followed up 13 (so far) infusions ot Pembro. So a different drug and not in combination but subsequent.
For a little history, I have always had dry skin and my hands have been cracked, painful and dry since about 18 (I'm 31 now). Mel found on my toe and had subsequent SNLB and WLND followed by stage 4 diag last december. Mets throughout cheat bone structure (spine, sternum, ribs) and on liver.
Ippi gave me some dry skin and fatigue but that was about it. Scan after Ipi showed some growth but pain from my bone mets was all but gone. Pembro was similar – growth stopped or was extremely mild, still not pain (for first 2 scans).
Ippi can also have delayed responses because some immune systems take a little while to build up steam. About 6-9 months into my total infusion treatment (so 4 ipi infusions and 7-8 Pembro) i began experiencing very dry skin on the bottoms of my feet, in/near ankles and other weird spots. My hands also got more dry and cracked than ever.
Then I had my most recent scan and I went from mild growth (if at all – Drs suspected inflamation) to no metabolic activity or NED.
Personally, I think the Ipi/Nivo trial is much better than Ipi/IL2. However, there's a lot of science behind it that I don't understand and the IL2 trial may have some significant results which may offer even more advanced combinations or ideas. Hang in there
-Justin
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- January 5, 2016 at 8:32 pm
Hey Justin, Its been 24 hours since the ipi-nivo infusion. So far so good just some fatigue and sleeplessness. Hope all gets better for you skin stuff. I don't know if having more time go by will increase side effects but only time will tell. Good luck, Scott.
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- January 5, 2016 at 8:32 pm
Hey Justin, Its been 24 hours since the ipi-nivo infusion. So far so good just some fatigue and sleeplessness. Hope all gets better for you skin stuff. I don't know if having more time go by will increase side effects but only time will tell. Good luck, Scott.
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- January 5, 2016 at 8:32 pm
Hey Justin, Its been 24 hours since the ipi-nivo infusion. So far so good just some fatigue and sleeplessness. Hope all gets better for you skin stuff. I don't know if having more time go by will increase side effects but only time will tell. Good luck, Scott.
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- January 7, 2016 at 2:26 pm
It depends. I think I usually get fatigue after each treatment, but it might just be because those days have a little extra anxiety. Sounds similar to you and it also sounds like your reactions are pretty good.
I should note that side-effects, in quanity and quality, are not known to have a relation to treatment response. Some people have significant side effects, so much so, that they must stop treatment, even after 1 dose. Some of those folks are stable, some are NED, some are no response. The same is said for folks with limited or no side effects (like us!). So do not bother reading into that.
Side effects have increased over time (mine did for example). Again, there doesn't appear to be a relation. It can happen though.
My dry skin is a walk in the park compared to other side effects people have described and my results are great too. A little extra moisturizer is no big deal. On that note, don't feel bad asking the docs for help managing side effects, that also does not affect treatment and/or response.
I wish you the best of luck. I truly think that the ipi-nivo combo is a great option and early results are very promising.
-Justin
-
- January 7, 2016 at 5:22 pm
Yes, I do believe anxiety playes a role in side effect concern,at least initially. Again time will tell as treatment and meds ramp up so hoping for the best. So you did ipi alone followed by pembro. Were you prior to the approvals of ipi and pembro or nivo being used together? Like you said, one wonders sometimes if the side effects seem minimal, are the meds doing there job. I was never offered pembro over nivo. Your success sounds very encouraging and hope you keep it going.
Scott.
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- January 7, 2016 at 5:22 pm
Yes, I do believe anxiety playes a role in side effect concern,at least initially. Again time will tell as treatment and meds ramp up so hoping for the best. So you did ipi alone followed by pembro. Were you prior to the approvals of ipi and pembro or nivo being used together? Like you said, one wonders sometimes if the side effects seem minimal, are the meds doing there job. I was never offered pembro over nivo. Your success sounds very encouraging and hope you keep it going.
Scott.
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- January 8, 2016 at 4:51 pm
I don't think ipi/nivo combo is approved yet. At the time I was diagnosed stage III, the ipi application was still in trial (I applied, got the interferon arm and declined). When I was diagnosed stage IV, ipi was approved (obviously) and Pembro was just recently approved and Nivo was quite literally just approved. However, Ipi was still first-line, so I had to do it first to get to Pembro. I did Pembro because my doctor said they had it readily available and they expected it to take several months to get. Since they had done the pembro trial at my hospital, I'm guessing they had supplied.
So yes – I did ipi for 3 months, followed by Pembro indefintiely (9 months so far). My doc discussed the ipi/nivo trial when i was stable as an alternative should my cancer progress. They are different drugs (and work slightly differently) so it is possible that they could have different effects, reactions and so on.
Hang in there Scott. TIt sounds like you're in good hands.
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- January 8, 2016 at 4:51 pm
I don't think ipi/nivo combo is approved yet. At the time I was diagnosed stage III, the ipi application was still in trial (I applied, got the interferon arm and declined). When I was diagnosed stage IV, ipi was approved (obviously) and Pembro was just recently approved and Nivo was quite literally just approved. However, Ipi was still first-line, so I had to do it first to get to Pembro. I did Pembro because my doctor said they had it readily available and they expected it to take several months to get. Since they had done the pembro trial at my hospital, I'm guessing they had supplied.
So yes – I did ipi for 3 months, followed by Pembro indefintiely (9 months so far). My doc discussed the ipi/nivo trial when i was stable as an alternative should my cancer progress. They are different drugs (and work slightly differently) so it is possible that they could have different effects, reactions and so on.
Hang in there Scott. TIt sounds like you're in good hands.
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- January 8, 2016 at 4:51 pm
I don't think ipi/nivo combo is approved yet. At the time I was diagnosed stage III, the ipi application was still in trial (I applied, got the interferon arm and declined). When I was diagnosed stage IV, ipi was approved (obviously) and Pembro was just recently approved and Nivo was quite literally just approved. However, Ipi was still first-line, so I had to do it first to get to Pembro. I did Pembro because my doctor said they had it readily available and they expected it to take several months to get. Since they had done the pembro trial at my hospital, I'm guessing they had supplied.
So yes – I did ipi for 3 months, followed by Pembro indefintiely (9 months so far). My doc discussed the ipi/nivo trial when i was stable as an alternative should my cancer progress. They are different drugs (and work slightly differently) so it is possible that they could have different effects, reactions and so on.
Hang in there Scott. TIt sounds like you're in good hands.
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- January 28, 2016 at 12:41 pm
This is my first post. I was going for my third ipi/nivo when we discovered I had ipi induced colitis. I am on prednesone which seems to be working great. The two infusions with ipi/nivo left me fatigued, some intermittent diaherra, no nausea, slight skin rash and some mangeable itching. I was diagnosed in April 2013 with a lesion on my righ forearm. We had surgery and biopsies of the right axilla. We were told i was cancer free. One year later I had two infected nodes n the right elbow. They were surgically removed along with 22 nodes in the axilla, as a precaution. Nine months later three more infected nodes were found under the right bicep. We went into the Talimogene laherparepvec clinical trial where the injections were placed directly into the tumors. This seemed not to have any short-term effect. Those were then surgically removed. We had scans three months later that showed no tumors. The next three month scan showed two new infected nodes in the right axilla, tumors in the right upper lung and one tumor at the base of the spine, which also cracked the sacrum. I had radiation on the tumor at the base of the spine to decrease the size and get relief there. That really worked. We then began the ipi/nivo infusions right after the five days of radiation. Right now, I am feeling very good. Just waiting to see what the next steps are. We go for our next appointment in a week. As a side note, I had a very large lump in the one node in my arm pit. It started to decrease after the first ipi/nivo infusion and is now non-existent. Very curious if this is a good sign or if the node burst and is no longer there. Our next appointment is next week and scans two weeks after that. I am continuing on the prednisone for a one month taper. Now in the second week of that.
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- January 28, 2016 at 12:41 pm
This is my first post. I was going for my third ipi/nivo when we discovered I had ipi induced colitis. I am on prednesone which seems to be working great. The two infusions with ipi/nivo left me fatigued, some intermittent diaherra, no nausea, slight skin rash and some mangeable itching. I was diagnosed in April 2013 with a lesion on my righ forearm. We had surgery and biopsies of the right axilla. We were told i was cancer free. One year later I had two infected nodes n the right elbow. They were surgically removed along with 22 nodes in the axilla, as a precaution. Nine months later three more infected nodes were found under the right bicep. We went into the Talimogene laherparepvec clinical trial where the injections were placed directly into the tumors. This seemed not to have any short-term effect. Those were then surgically removed. We had scans three months later that showed no tumors. The next three month scan showed two new infected nodes in the right axilla, tumors in the right upper lung and one tumor at the base of the spine, which also cracked the sacrum. I had radiation on the tumor at the base of the spine to decrease the size and get relief there. That really worked. We then began the ipi/nivo infusions right after the five days of radiation. Right now, I am feeling very good. Just waiting to see what the next steps are. We go for our next appointment in a week. As a side note, I had a very large lump in the one node in my arm pit. It started to decrease after the first ipi/nivo infusion and is now non-existent. Very curious if this is a good sign or if the node burst and is no longer there. Our next appointment is next week and scans two weeks after that. I am continuing on the prednisone for a one month taper. Now in the second week of that.
-
- January 28, 2016 at 12:41 pm
This is my first post. I was going for my third ipi/nivo when we discovered I had ipi induced colitis. I am on prednesone which seems to be working great. The two infusions with ipi/nivo left me fatigued, some intermittent diaherra, no nausea, slight skin rash and some mangeable itching. I was diagnosed in April 2013 with a lesion on my righ forearm. We had surgery and biopsies of the right axilla. We were told i was cancer free. One year later I had two infected nodes n the right elbow. They were surgically removed along with 22 nodes in the axilla, as a precaution. Nine months later three more infected nodes were found under the right bicep. We went into the Talimogene laherparepvec clinical trial where the injections were placed directly into the tumors. This seemed not to have any short-term effect. Those were then surgically removed. We had scans three months later that showed no tumors. The next three month scan showed two new infected nodes in the right axilla, tumors in the right upper lung and one tumor at the base of the spine, which also cracked the sacrum. I had radiation on the tumor at the base of the spine to decrease the size and get relief there. That really worked. We then began the ipi/nivo infusions right after the five days of radiation. Right now, I am feeling very good. Just waiting to see what the next steps are. We go for our next appointment in a week. As a side note, I had a very large lump in the one node in my arm pit. It started to decrease after the first ipi/nivo infusion and is now non-existent. Very curious if this is a good sign or if the node burst and is no longer there. Our next appointment is next week and scans two weeks after that. I am continuing on the prednisone for a one month taper. Now in the second week of that.
-
- January 7, 2016 at 5:22 pm
Yes, I do believe anxiety playes a role in side effect concern,at least initially. Again time will tell as treatment and meds ramp up so hoping for the best. So you did ipi alone followed by pembro. Were you prior to the approvals of ipi and pembro or nivo being used together? Like you said, one wonders sometimes if the side effects seem minimal, are the meds doing there job. I was never offered pembro over nivo. Your success sounds very encouraging and hope you keep it going.
Scott.
-
- January 7, 2016 at 2:26 pm
It depends. I think I usually get fatigue after each treatment, but it might just be because those days have a little extra anxiety. Sounds similar to you and it also sounds like your reactions are pretty good.
I should note that side-effects, in quanity and quality, are not known to have a relation to treatment response. Some people have significant side effects, so much so, that they must stop treatment, even after 1 dose. Some of those folks are stable, some are NED, some are no response. The same is said for folks with limited or no side effects (like us!). So do not bother reading into that.
Side effects have increased over time (mine did for example). Again, there doesn't appear to be a relation. It can happen though.
My dry skin is a walk in the park compared to other side effects people have described and my results are great too. A little extra moisturizer is no big deal. On that note, don't feel bad asking the docs for help managing side effects, that also does not affect treatment and/or response.
I wish you the best of luck. I truly think that the ipi-nivo combo is a great option and early results are very promising.
-Justin
-
- January 7, 2016 at 2:26 pm
It depends. I think I usually get fatigue after each treatment, but it might just be because those days have a little extra anxiety. Sounds similar to you and it also sounds like your reactions are pretty good.
I should note that side-effects, in quanity and quality, are not known to have a relation to treatment response. Some people have significant side effects, so much so, that they must stop treatment, even after 1 dose. Some of those folks are stable, some are NED, some are no response. The same is said for folks with limited or no side effects (like us!). So do not bother reading into that.
Side effects have increased over time (mine did for example). Again, there doesn't appear to be a relation. It can happen though.
My dry skin is a walk in the park compared to other side effects people have described and my results are great too. A little extra moisturizer is no big deal. On that note, don't feel bad asking the docs for help managing side effects, that also does not affect treatment and/or response.
I wish you the best of luck. I truly think that the ipi-nivo combo is a great option and early results are very promising.
-Justin
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Tagged: cutaneous melanoma
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