› Forums › General Melanoma Community › Unsure of how to proceed??
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slh4448.
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- October 19, 2016 at 3:44 pm
Hey all,
I know that many of you have read my posts about what is going on with me with side effects that I have been experiencing with ipi. To recap, I have had the first two infusions with the last one being on September 20th. For the better part of three + weeks after I experienced a lot of nausea and diarrhea.
Since September 30th, I have been on Prednisone 80mg daily, 30mg daily of a ppi. Last week I was in the hospital for two days getting a ct scan and blood work and both came back clear. I had a colonoscopy and it was determined that I have acute moderate colitis, more than likely due to ipi. For the last 10 days I have been taking Budesonide twice daily for the colitis and 10mg of Potassium because those levels were low.
After my release from the hospital I met with my doctor and he is recommending for me to not go further with anymore ipi treatments. Take a watch and see plan of action since I'm stage 3a.
I'm feeling much better, no nausea and no diarrhea and have a pretty good appetite.
So I have a follow up appointment with my doctor tomorrow, will do labs again and discuss everything.
So my thoughts are to discuss with my doctor about having my 3rd infusion maybe by the end of October, beginning of November while I'm still taking the Budesonide and the other meds that I am taking more from a proactive role instead of waiting reactively to any further side effects. I feel like I'm playing with fire with my case of colitis already, but I think that I would like to get through the loading doses. If all went well after the 3rd, have the 4th infusion around mid-December, then get a scan before the end of the year since my deductible will have been met.
I wonder what my dotor will say about my plan???? Any thoughts out there from you on my "possible" plan???
Thanks,
Stacy
- Replies
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- October 19, 2016 at 6:02 pm
Hi Stacy,
With such high-grade adverse reactions to ipi, I can see why your doctor may be discouraging you to continue. Watching and waiting is not completely unreasonable. But I understand the desire to treat disease, especially while it is confined. One idea is if you have "measurable disease", you may be able to qualify for a trial of anti PD-1 for stage 3. I don't have the specifics handy, but I think that's the trend, to prove pembro or nivo can be very effective in earlier stage and as you know, provides a much more tolerable side-effect profile.
Gary
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- October 19, 2016 at 6:02 pm
Hi Stacy,
With such high-grade adverse reactions to ipi, I can see why your doctor may be discouraging you to continue. Watching and waiting is not completely unreasonable. But I understand the desire to treat disease, especially while it is confined. One idea is if you have "measurable disease", you may be able to qualify for a trial of anti PD-1 for stage 3. I don't have the specifics handy, but I think that's the trend, to prove pembro or nivo can be very effective in earlier stage and as you know, provides a much more tolerable side-effect profile.
Gary
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- October 19, 2016 at 6:02 pm
Hi Stacy,
With such high-grade adverse reactions to ipi, I can see why your doctor may be discouraging you to continue. Watching and waiting is not completely unreasonable. But I understand the desire to treat disease, especially while it is confined. One idea is if you have "measurable disease", you may be able to qualify for a trial of anti PD-1 for stage 3. I don't have the specifics handy, but I think that's the trend, to prove pembro or nivo can be very effective in earlier stage and as you know, provides a much more tolerable side-effect profile.
Gary
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- October 19, 2016 at 10:42 pm
At stage 3a, you would be NED after your SLNB, so no measurable disease for you, which is good. I know it's hard to think about stopping Ipi, but watch and wait is still a good option, and is actually considered the top option for stage 3a anyway. You've gotten some Ipi in your system, it will continue to do its thing in your body, and hopefully you'll remain NED for a long long time.
Doesn't hurt to run your idea by your doc though, just see what they think about it. But, I wouldn't be surprised if they don't want to play that game with colitis.
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- October 19, 2016 at 10:42 pm
At stage 3a, you would be NED after your SLNB, so no measurable disease for you, which is good. I know it's hard to think about stopping Ipi, but watch and wait is still a good option, and is actually considered the top option for stage 3a anyway. You've gotten some Ipi in your system, it will continue to do its thing in your body, and hopefully you'll remain NED for a long long time.
Doesn't hurt to run your idea by your doc though, just see what they think about it. But, I wouldn't be surprised if they don't want to play that game with colitis.
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- October 19, 2016 at 10:42 pm
At stage 3a, you would be NED after your SLNB, so no measurable disease for you, which is good. I know it's hard to think about stopping Ipi, but watch and wait is still a good option, and is actually considered the top option for stage 3a anyway. You've gotten some Ipi in your system, it will continue to do its thing in your body, and hopefully you'll remain NED for a long long time.
Doesn't hurt to run your idea by your doc though, just see what they think about it. But, I wouldn't be surprised if they don't want to play that game with colitis.
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- October 20, 2016 at 1:36 am
Hey Stacy glad to hear you’re finally feeling normal again! I know it’s really hard to not “finish” the doses of Ipi, but these doses aren’t a one-size-fits-all. Clearly, your immune system is revved up and its gotten the message. This isn’t a typical medication with a half life. Once your body responds, you’re not doing yourself any good by pushing the issue. They also won’t even consider another dose while you’re still on steroids, and the tapering phase can take quite some time. For 80 mg it can take over 8 weeks with the typical taper of 10 mg/week as you sometimes can relapse during a taper regimen.
Definitely ask your doc about your plan. Definitely ask a ton of questions. But don’t be surprised if they don’t want to play with fire. Keep us updated on the plan!
Lauren -
- October 20, 2016 at 1:36 am
Hey Stacy glad to hear you’re finally feeling normal again! I know it’s really hard to not “finish” the doses of Ipi, but these doses aren’t a one-size-fits-all. Clearly, your immune system is revved up and its gotten the message. This isn’t a typical medication with a half life. Once your body responds, you’re not doing yourself any good by pushing the issue. They also won’t even consider another dose while you’re still on steroids, and the tapering phase can take quite some time. For 80 mg it can take over 8 weeks with the typical taper of 10 mg/week as you sometimes can relapse during a taper regimen.
Definitely ask your doc about your plan. Definitely ask a ton of questions. But don’t be surprised if they don’t want to play with fire. Keep us updated on the plan!
Lauren -
- October 20, 2016 at 1:36 am
Hey Stacy glad to hear you’re finally feeling normal again! I know it’s really hard to not “finish” the doses of Ipi, but these doses aren’t a one-size-fits-all. Clearly, your immune system is revved up and its gotten the message. This isn’t a typical medication with a half life. Once your body responds, you’re not doing yourself any good by pushing the issue. They also won’t even consider another dose while you’re still on steroids, and the tapering phase can take quite some time. For 80 mg it can take over 8 weeks with the typical taper of 10 mg/week as you sometimes can relapse during a taper regimen.
Definitely ask your doc about your plan. Definitely ask a ton of questions. But don’t be surprised if they don’t want to play with fire. Keep us updated on the plan!
Lauren -
- October 20, 2016 at 3:52 pm
Hi Stacey, I wanted to share with you a video that talks about Ipi and if you should continue to give more in the combination of Ipi and Nivo after the patient has Ipi toxicity. It is hard to find specific info for the adjuvant setting and ipi toxicity. Hope this is helpfull. Ed https://www.youtube.com/watch?v=VCOAk7i9kmU
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- October 20, 2016 at 3:52 pm
Hi Stacey, I wanted to share with you a video that talks about Ipi and if you should continue to give more in the combination of Ipi and Nivo after the patient has Ipi toxicity. It is hard to find specific info for the adjuvant setting and ipi toxicity. Hope this is helpfull. Ed https://www.youtube.com/watch?v=VCOAk7i9kmU
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- October 20, 2016 at 3:52 pm
Hi Stacey, I wanted to share with you a video that talks about Ipi and if you should continue to give more in the combination of Ipi and Nivo after the patient has Ipi toxicity. It is hard to find specific info for the adjuvant setting and ipi toxicity. Hope this is helpfull. Ed https://www.youtube.com/watch?v=VCOAk7i9kmU
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- October 21, 2016 at 5:40 pm
Hi Stacy,
Listen to your body (and your doc). I didn't get colitis but got the adrenal/pituitary problems 1 week after my 3rd dose in July. Did the prednisone thing starting at 70mg and weaned down to 10mg. At 10mg in Aug the symptoms came back and I had to go back on prednisone – 100mg and I'm still being weaned down slowly – just dropped to 15 this week. My doc said that my body was definitely reacting to the drug and lets wait to do some scans at the 10 week mark and see what shows up before deciding what to do next. I just got the scans done 2 weeks ago and they were great. They thought there was some remaining melanoma externally where the primary sight was (my primary location was my vulva so its not a typical location and my doc had to do some research as to what to do next). I met with my doc last week and the biopsy came back that its not melanoma but probably some other weird reaction to the ipi.
Basically – and this is the first time I'm putting it in writing so it feels weird – but I'm NED!!!
Like my doc said – my body reacted to the drugs quickly and my body just couldn't take any more AND didn't need any more. Now my goal is to get the prednisone down to 10, start the nivo maintenance on the 28th as scheduled, then get the prednisone down to 5 and get rid of my moon face and belly!!
I truly think that 4 doses is the max of the ipi/nivo combo that they can give but that in many cases for us on this board, 4 aren't needed.
karen
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- October 21, 2016 at 5:40 pm
Hi Stacy,
Listen to your body (and your doc). I didn't get colitis but got the adrenal/pituitary problems 1 week after my 3rd dose in July. Did the prednisone thing starting at 70mg and weaned down to 10mg. At 10mg in Aug the symptoms came back and I had to go back on prednisone – 100mg and I'm still being weaned down slowly – just dropped to 15 this week. My doc said that my body was definitely reacting to the drug and lets wait to do some scans at the 10 week mark and see what shows up before deciding what to do next. I just got the scans done 2 weeks ago and they were great. They thought there was some remaining melanoma externally where the primary sight was (my primary location was my vulva so its not a typical location and my doc had to do some research as to what to do next). I met with my doc last week and the biopsy came back that its not melanoma but probably some other weird reaction to the ipi.
Basically – and this is the first time I'm putting it in writing so it feels weird – but I'm NED!!!
Like my doc said – my body reacted to the drugs quickly and my body just couldn't take any more AND didn't need any more. Now my goal is to get the prednisone down to 10, start the nivo maintenance on the 28th as scheduled, then get the prednisone down to 5 and get rid of my moon face and belly!!
I truly think that 4 doses is the max of the ipi/nivo combo that they can give but that in many cases for us on this board, 4 aren't needed.
karen
-
- October 21, 2016 at 5:40 pm
Hi Stacy,
Listen to your body (and your doc). I didn't get colitis but got the adrenal/pituitary problems 1 week after my 3rd dose in July. Did the prednisone thing starting at 70mg and weaned down to 10mg. At 10mg in Aug the symptoms came back and I had to go back on prednisone – 100mg and I'm still being weaned down slowly – just dropped to 15 this week. My doc said that my body was definitely reacting to the drug and lets wait to do some scans at the 10 week mark and see what shows up before deciding what to do next. I just got the scans done 2 weeks ago and they were great. They thought there was some remaining melanoma externally where the primary sight was (my primary location was my vulva so its not a typical location and my doc had to do some research as to what to do next). I met with my doc last week and the biopsy came back that its not melanoma but probably some other weird reaction to the ipi.
Basically – and this is the first time I'm putting it in writing so it feels weird – but I'm NED!!!
Like my doc said – my body reacted to the drugs quickly and my body just couldn't take any more AND didn't need any more. Now my goal is to get the prednisone down to 10, start the nivo maintenance on the 28th as scheduled, then get the prednisone down to 5 and get rid of my moon face and belly!!
I truly think that 4 doses is the max of the ipi/nivo combo that they can give but that in many cases for us on this board, 4 aren't needed.
karen
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- October 26, 2016 at 5:19 pm
Karen,
Thak you for your response. Quick question for you. My doctor hasn't mentioned Nivo probably because I am stage 3a with NED and I did not have a CLNB. What stage are you and did you have a CLNB? I think having a CLNB is a prerequisite of being able to get Nivo?? Plus I'm apparently NED but will know for sure when I have my first scan around early December. Thanks so much!!!
Stacy
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- October 26, 2016 at 5:19 pm
Karen,
Thak you for your response. Quick question for you. My doctor hasn't mentioned Nivo probably because I am stage 3a with NED and I did not have a CLNB. What stage are you and did you have a CLNB? I think having a CLNB is a prerequisite of being able to get Nivo?? Plus I'm apparently NED but will know for sure when I have my first scan around early December. Thanks so much!!!
Stacy
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- October 29, 2016 at 4:04 pm
Hi Stacy
I was diagnosed stage 4 in May. Did 3 doses of ipi/nivo and one week after the 3rd dose I was put on the steroids. Got down to 10mg and it inflamed again so got put back up to 100mg and went down to 10 last friday. After 1 week with no headache (my symptom of the pituatary getting inflamed) I started Nivo maintenance yesterday. The ipi/nivo is the only treatment I've had. I got scans 10 weeks after my last dose and they were clear. I was so shocked. I had a few more lesions visible and it looked like Melanoma and the doc thought it was but another doc in the practice suggested doing a biopsy to be sure it was melanoma and it surprised all of us that it came back negative. Its some other sort of dermatological thing but NOT melanoma and at that appointment last week she told me I was in remission. I was speechless.
Personally (and I'm not a doctor) but I think the 4 doses is ideal and the maximum you can do but I think many of us absorb and react to these drugs so intensely that 4 would just be too much and the amount already taken is enough. The 3rd dose put my body over the edge but it definitely did the trick.
I just started the Nivo alone so I'm not sure what side affects might arise but I think most of mine were probably from the more toxic ipi. At this point I'm cancer free so I guess I'll deal with the side affects and be thankful that I'll be around for a long time to complain about them 🙂
Karen
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- October 29, 2016 at 4:04 pm
Hi Stacy
I was diagnosed stage 4 in May. Did 3 doses of ipi/nivo and one week after the 3rd dose I was put on the steroids. Got down to 10mg and it inflamed again so got put back up to 100mg and went down to 10 last friday. After 1 week with no headache (my symptom of the pituatary getting inflamed) I started Nivo maintenance yesterday. The ipi/nivo is the only treatment I've had. I got scans 10 weeks after my last dose and they were clear. I was so shocked. I had a few more lesions visible and it looked like Melanoma and the doc thought it was but another doc in the practice suggested doing a biopsy to be sure it was melanoma and it surprised all of us that it came back negative. Its some other sort of dermatological thing but NOT melanoma and at that appointment last week she told me I was in remission. I was speechless.
Personally (and I'm not a doctor) but I think the 4 doses is ideal and the maximum you can do but I think many of us absorb and react to these drugs so intensely that 4 would just be too much and the amount already taken is enough. The 3rd dose put my body over the edge but it definitely did the trick.
I just started the Nivo alone so I'm not sure what side affects might arise but I think most of mine were probably from the more toxic ipi. At this point I'm cancer free so I guess I'll deal with the side affects and be thankful that I'll be around for a long time to complain about them 🙂
Karen
-
- October 29, 2016 at 4:04 pm
Hi Stacy
I was diagnosed stage 4 in May. Did 3 doses of ipi/nivo and one week after the 3rd dose I was put on the steroids. Got down to 10mg and it inflamed again so got put back up to 100mg and went down to 10 last friday. After 1 week with no headache (my symptom of the pituatary getting inflamed) I started Nivo maintenance yesterday. The ipi/nivo is the only treatment I've had. I got scans 10 weeks after my last dose and they were clear. I was so shocked. I had a few more lesions visible and it looked like Melanoma and the doc thought it was but another doc in the practice suggested doing a biopsy to be sure it was melanoma and it surprised all of us that it came back negative. Its some other sort of dermatological thing but NOT melanoma and at that appointment last week she told me I was in remission. I was speechless.
Personally (and I'm not a doctor) but I think the 4 doses is ideal and the maximum you can do but I think many of us absorb and react to these drugs so intensely that 4 would just be too much and the amount already taken is enough. The 3rd dose put my body over the edge but it definitely did the trick.
I just started the Nivo alone so I'm not sure what side affects might arise but I think most of mine were probably from the more toxic ipi. At this point I'm cancer free so I guess I'll deal with the side affects and be thankful that I'll be around for a long time to complain about them 🙂
Karen
-
- October 26, 2016 at 5:19 pm
Karen,
Thak you for your response. Quick question for you. My doctor hasn't mentioned Nivo probably because I am stage 3a with NED and I did not have a CLNB. What stage are you and did you have a CLNB? I think having a CLNB is a prerequisite of being able to get Nivo?? Plus I'm apparently NED but will know for sure when I have my first scan around early December. Thanks so much!!!
Stacy
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- October 26, 2016 at 5:27 pm
Hey all,
Just a quick update from me and thanks for everyone's responses…they have all been helpful.
So after meeting with my docotor last week, I am not moving forward with anymore ipi. Two doses and that is it since I developed colitis. I have been on Budesinide for a few weeks now and they just yesterday upped my dose from 6mg daily to 9mg and last week they dropped by prednisone from 80mg daily to 60mg daily and starting today down to 40mg daily. That's why the increase in Budesinide. I feel relatively fine. Little fatigued, having trouble sleeping but they think it's due to the prednisone (which I take around 6-6:30am every morning). I am also taking 30mg daily of a ppi.
Since I had the colitis flare up, a big fat NO on continuing on with ipi!! Being stage 3a, nothing else for me to do regarding another form of treatment especially since I did not have the CLNB. I'm cool with that. We are doing a wait and watch, get my colitis much more under control and have my first scan in early December. Will go from there.
Stacy
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- October 26, 2016 at 5:27 pm
Hey all,
Just a quick update from me and thanks for everyone's responses…they have all been helpful.
So after meeting with my docotor last week, I am not moving forward with anymore ipi. Two doses and that is it since I developed colitis. I have been on Budesinide for a few weeks now and they just yesterday upped my dose from 6mg daily to 9mg and last week they dropped by prednisone from 80mg daily to 60mg daily and starting today down to 40mg daily. That's why the increase in Budesinide. I feel relatively fine. Little fatigued, having trouble sleeping but they think it's due to the prednisone (which I take around 6-6:30am every morning). I am also taking 30mg daily of a ppi.
Since I had the colitis flare up, a big fat NO on continuing on with ipi!! Being stage 3a, nothing else for me to do regarding another form of treatment especially since I did not have the CLNB. I'm cool with that. We are doing a wait and watch, get my colitis much more under control and have my first scan in early December. Will go from there.
Stacy
-
- October 26, 2016 at 5:27 pm
Hey all,
Just a quick update from me and thanks for everyone's responses…they have all been helpful.
So after meeting with my docotor last week, I am not moving forward with anymore ipi. Two doses and that is it since I developed colitis. I have been on Budesinide for a few weeks now and they just yesterday upped my dose from 6mg daily to 9mg and last week they dropped by prednisone from 80mg daily to 60mg daily and starting today down to 40mg daily. That's why the increase in Budesinide. I feel relatively fine. Little fatigued, having trouble sleeping but they think it's due to the prednisone (which I take around 6-6:30am every morning). I am also taking 30mg daily of a ppi.
Since I had the colitis flare up, a big fat NO on continuing on with ipi!! Being stage 3a, nothing else for me to do regarding another form of treatment especially since I did not have the CLNB. I'm cool with that. We are doing a wait and watch, get my colitis much more under control and have my first scan in early December. Will go from there.
Stacy
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- October 28, 2016 at 12:04 pm
So I guess I spoke to soon 🙁
On Thursday I had 4 more cases of diarrhea and so far this morning I have had three more cases. Yesterday the doctors increased my prednisone back up to 80mg daily from 40mg (had only been two days). They also added an antibiotic Bactram because with long-term usage of prednisone they worry about pneumonia. Just what I don't need! UGH!!!!!!!!!!
Wow this is quite the journey just after two doses of ipi with my last dose being on Spetember 20th.
Stacy
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- October 28, 2016 at 12:04 pm
So I guess I spoke to soon 🙁
On Thursday I had 4 more cases of diarrhea and so far this morning I have had three more cases. Yesterday the doctors increased my prednisone back up to 80mg daily from 40mg (had only been two days). They also added an antibiotic Bactram because with long-term usage of prednisone they worry about pneumonia. Just what I don't need! UGH!!!!!!!!!!
Wow this is quite the journey just after two doses of ipi with my last dose being on Spetember 20th.
Stacy
-
- October 28, 2016 at 12:04 pm
So I guess I spoke to soon 🙁
On Thursday I had 4 more cases of diarrhea and so far this morning I have had three more cases. Yesterday the doctors increased my prednisone back up to 80mg daily from 40mg (had only been two days). They also added an antibiotic Bactram because with long-term usage of prednisone they worry about pneumonia. Just what I don't need! UGH!!!!!!!!!!
Wow this is quite the journey just after two doses of ipi with my last dose being on Spetember 20th.
Stacy
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