› Forums › General Melanoma Community › IPI/NIVO
- This topic has 18 replies, 5 voices, and was last updated 8 years, 6 months ago by
Bearsworth.
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- October 26, 2015 at 3:53 pm
Just had scans done last week and they found a swollen lymph node. I have hade 2 WLE's on my back and lymph nodes removed in my left and right groin. Had the deep ones removed in my right. Experience shows that this is Melanoma as well but the biopsy hasn't been done yet. It is scheduled for this week. If this comes out as positive for Melanoma, we are looking to do IPI/NIVO treatment. Obviously I am very nervous and am praying the biopsy is benign. If anyone could help with some of these questions I have, I would appreciate it.
1. Will the meds affect my lymphadema in my legs?
2. Will I have to get a port?
3. What kind of side effects/symptoms should I expect? ( I am a healthy 42 yr old other than Melanoma)
4. How long after your first dose did you end up with side effects?
5. Will I be able to function normally throughout the day with my job? (Desk Job)
6. Will exersize help or have adverse effects to the side effects? (Walking and light jogging)
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- October 26, 2015 at 4:35 pm
So you mean the treatment where they combine taking ipi and nivo at the same time for 4 doses then continue with just nivo?
As far as treatments it is the best performing but has major side affects with the majority of people not finishing the 4 doses. Granted those people seem to be some of the best responders once they recover.
Since they tried zelboraf on me first I was no longer treatment naive so I wasn't able to do this treatment so I'm really not sure about all your questions. If you plan to continue with the nivo for over a year I would suggest the port so you aren't getting stuck every couple weeks. Walking is always good. The rest I dunno.
Artie
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- October 26, 2015 at 4:35 pm
So you mean the treatment where they combine taking ipi and nivo at the same time for 4 doses then continue with just nivo?
As far as treatments it is the best performing but has major side affects with the majority of people not finishing the 4 doses. Granted those people seem to be some of the best responders once they recover.
Since they tried zelboraf on me first I was no longer treatment naive so I wasn't able to do this treatment so I'm really not sure about all your questions. If you plan to continue with the nivo for over a year I would suggest the port so you aren't getting stuck every couple weeks. Walking is always good. The rest I dunno.
Artie
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- October 26, 2015 at 11:01 pm
I have recently completed 4 IPI/NIVO and 4 additional NIVO treatments (on-going) and expect to stay with it for as long as the doctors/study recommend. My results so far have been good.
My experence IPI/NIVO treatment is not as difficult as some of the others express. But I know how rough it can get after I had a many months of Chemo ( diffrent treatment) with much more siginificant side effects.
I have continued to work full time but need to take time off for treatment and related test/scans.
I had many of the typical side effects, however my treatment team was insistant that I let them know what I was dealing with and how I was feeling. They do detailed blood test that help monitor overall impact on organs and general impact of the medication. They have a wide range of TOOLS (medications/ treatment), some very simple and others more complicated that can help control the negitive effects. The doctor will temporarly suspend or discontinue the treatment if you can not tolerate the treatment. At this point in MY treatment I dont notice the treatment side effects at all. HOWEVER everyone has a diffrent responce to the medications from what I have been able to understand from the Doctors and this forum. the infusions are not that bad, you get fimiliar with the sticking process, and the dose is given in 2.5 hours for the dual treatment and 1 hour for the NIVO.
I have developed Lymphadema but I dont think it's related to the IPI/NIVO treatment but related to the Lymph node removal that I had prior to the treatment.
STAYING ACTIVE IS MOST LIKELY THE BEST YOU CAN DO FOR YOURSELF, both physically and emotionally.
Dont wory, stay positive and take advantage of the posibilites that the medications offer.
Be well.
Chris
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- October 26, 2015 at 11:01 pm
I have recently completed 4 IPI/NIVO and 4 additional NIVO treatments (on-going) and expect to stay with it for as long as the doctors/study recommend. My results so far have been good.
My experence IPI/NIVO treatment is not as difficult as some of the others express. But I know how rough it can get after I had a many months of Chemo ( diffrent treatment) with much more siginificant side effects.
I have continued to work full time but need to take time off for treatment and related test/scans.
I had many of the typical side effects, however my treatment team was insistant that I let them know what I was dealing with and how I was feeling. They do detailed blood test that help monitor overall impact on organs and general impact of the medication. They have a wide range of TOOLS (medications/ treatment), some very simple and others more complicated that can help control the negitive effects. The doctor will temporarly suspend or discontinue the treatment if you can not tolerate the treatment. At this point in MY treatment I dont notice the treatment side effects at all. HOWEVER everyone has a diffrent responce to the medications from what I have been able to understand from the Doctors and this forum. the infusions are not that bad, you get fimiliar with the sticking process, and the dose is given in 2.5 hours for the dual treatment and 1 hour for the NIVO.
I have developed Lymphadema but I dont think it's related to the IPI/NIVO treatment but related to the Lymph node removal that I had prior to the treatment.
STAYING ACTIVE IS MOST LIKELY THE BEST YOU CAN DO FOR YOURSELF, both physically and emotionally.
Dont wory, stay positive and take advantage of the posibilites that the medications offer.
Be well.
Chris
-
- October 26, 2015 at 11:01 pm
I have recently completed 4 IPI/NIVO and 4 additional NIVO treatments (on-going) and expect to stay with it for as long as the doctors/study recommend. My results so far have been good.
My experence IPI/NIVO treatment is not as difficult as some of the others express. But I know how rough it can get after I had a many months of Chemo ( diffrent treatment) with much more siginificant side effects.
I have continued to work full time but need to take time off for treatment and related test/scans.
I had many of the typical side effects, however my treatment team was insistant that I let them know what I was dealing with and how I was feeling. They do detailed blood test that help monitor overall impact on organs and general impact of the medication. They have a wide range of TOOLS (medications/ treatment), some very simple and others more complicated that can help control the negitive effects. The doctor will temporarly suspend or discontinue the treatment if you can not tolerate the treatment. At this point in MY treatment I dont notice the treatment side effects at all. HOWEVER everyone has a diffrent responce to the medications from what I have been able to understand from the Doctors and this forum. the infusions are not that bad, you get fimiliar with the sticking process, and the dose is given in 2.5 hours for the dual treatment and 1 hour for the NIVO.
I have developed Lymphadema but I dont think it's related to the IPI/NIVO treatment but related to the Lymph node removal that I had prior to the treatment.
STAYING ACTIVE IS MOST LIKELY THE BEST YOU CAN DO FOR YOURSELF, both physically and emotionally.
Dont wory, stay positive and take advantage of the posibilites that the medications offer.
Be well.
Chris
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- October 26, 2015 at 4:35 pm
So you mean the treatment where they combine taking ipi and nivo at the same time for 4 doses then continue with just nivo?
As far as treatments it is the best performing but has major side affects with the majority of people not finishing the 4 doses. Granted those people seem to be some of the best responders once they recover.
Since they tried zelboraf on me first I was no longer treatment naive so I wasn't able to do this treatment so I'm really not sure about all your questions. If you plan to continue with the nivo for over a year I would suggest the port so you aren't getting stuck every couple weeks. Walking is always good. The rest I dunno.
Artie
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- October 26, 2015 at 6:11 pm
Everyone reacts differently. Here is my experience:
-swollen tumors 6-12 hours after first dose
-rash around "melanoma" sites (Zyrtec helped clear this up)
-upset stomach/lack of appetite/diarrhea that increased each round (and ultimately got so bad I was taken off of the combo)
I ended up doing three out of the four combination treatments. I then had scans. All of my subcutaneous tumors were gone. The tumors in my liver were reduced by 85-95%.
Following scans I had one single dose of ipi and then went onto nivo. Early on I had frequent stomach cramps and diarrhea from the nivo. My thyroid also went crazy. I'm now on Synthroid to manage my thyroid and it is fine. I also take a probiotic and eat less gluten, which seems to help with the stomach issues. I actually feel like my old self and I'm able to keep up with my two-year-old and 10-month-old.
Since I lost 20 pounds, ended up in the hospital, and wasn't allowed the full dosage, other melanoma patients have asked if I would go out on the combo again. ABSOLUTELY!
Best of luck to you. I hope this helps.
Ashley
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- October 26, 2015 at 6:15 pm
I realize I didn't answer all of your questions:
1. The swelling in my leg actually improved.
2. I have a port because I was on chemo before this. I don't think you have to have one but it is nice.
3. I believe you could keep working.
4. Exercise, more than anything, helps combat fatigue.
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- October 26, 2015 at 6:15 pm
I realize I didn't answer all of your questions:
1. The swelling in my leg actually improved.
2. I have a port because I was on chemo before this. I don't think you have to have one but it is nice.
3. I believe you could keep working.
4. Exercise, more than anything, helps combat fatigue.
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- October 26, 2015 at 6:15 pm
I realize I didn't answer all of your questions:
1. The swelling in my leg actually improved.
2. I have a port because I was on chemo before this. I don't think you have to have one but it is nice.
3. I believe you could keep working.
4. Exercise, more than anything, helps combat fatigue.
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- October 26, 2015 at 6:11 pm
Everyone reacts differently. Here is my experience:
-swollen tumors 6-12 hours after first dose
-rash around "melanoma" sites (Zyrtec helped clear this up)
-upset stomach/lack of appetite/diarrhea that increased each round (and ultimately got so bad I was taken off of the combo)
I ended up doing three out of the four combination treatments. I then had scans. All of my subcutaneous tumors were gone. The tumors in my liver were reduced by 85-95%.
Following scans I had one single dose of ipi and then went onto nivo. Early on I had frequent stomach cramps and diarrhea from the nivo. My thyroid also went crazy. I'm now on Synthroid to manage my thyroid and it is fine. I also take a probiotic and eat less gluten, which seems to help with the stomach issues. I actually feel like my old self and I'm able to keep up with my two-year-old and 10-month-old.
Since I lost 20 pounds, ended up in the hospital, and wasn't allowed the full dosage, other melanoma patients have asked if I would go out on the combo again. ABSOLUTELY!
Best of luck to you. I hope this helps.
Ashley
-
- October 26, 2015 at 6:11 pm
Everyone reacts differently. Here is my experience:
-swollen tumors 6-12 hours after first dose
-rash around "melanoma" sites (Zyrtec helped clear this up)
-upset stomach/lack of appetite/diarrhea that increased each round (and ultimately got so bad I was taken off of the combo)
I ended up doing three out of the four combination treatments. I then had scans. All of my subcutaneous tumors were gone. The tumors in my liver were reduced by 85-95%.
Following scans I had one single dose of ipi and then went onto nivo. Early on I had frequent stomach cramps and diarrhea from the nivo. My thyroid also went crazy. I'm now on Synthroid to manage my thyroid and it is fine. I also take a probiotic and eat less gluten, which seems to help with the stomach issues. I actually feel like my old self and I'm able to keep up with my two-year-old and 10-month-old.
Since I lost 20 pounds, ended up in the hospital, and wasn't allowed the full dosage, other melanoma patients have asked if I would go out on the combo again. ABSOLUTELY!
Best of luck to you. I hope this helps.
Ashley
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- October 27, 2015 at 7:59 pm
I am on a Trial and get both IPI and NIVO. One of the drugs is a placebo (I think I am getting Opdivo).
I get the IPI once every 3 weeks for 4 infusions and then a follow up one every 3 months. I get NIVO every other week for a year.
I did not have any side effects until my 3rd infusion of NIVO. My side effects are:
1) I have had one rash that lasted 2-3 days and went away. It has not returned.
2) I have has some minor lower back and joint pain. One week it was very bad but I can manage it with Percocets.
3) I do have some swelling on the left side of my chest next to the area where my lymph nodes were removed.
4) I am tired the next day after my infusions.
I have not lost any wt. (gained some). I sleep well. I did get a port because I am sick of all the needle pokes for IV's, blood draws and CT's.
I think you can work, but you will be off a minimum 1/2 day every other week sometimes 2 weeks in a row. I need to sleep most of the next day after an infusion. I work for myself at home so this is not a big issue for me.
Tom
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- October 27, 2015 at 7:59 pm
I am on a Trial and get both IPI and NIVO. One of the drugs is a placebo (I think I am getting Opdivo).
I get the IPI once every 3 weeks for 4 infusions and then a follow up one every 3 months. I get NIVO every other week for a year.
I did not have any side effects until my 3rd infusion of NIVO. My side effects are:
1) I have had one rash that lasted 2-3 days and went away. It has not returned.
2) I have has some minor lower back and joint pain. One week it was very bad but I can manage it with Percocets.
3) I do have some swelling on the left side of my chest next to the area where my lymph nodes were removed.
4) I am tired the next day after my infusions.
I have not lost any wt. (gained some). I sleep well. I did get a port because I am sick of all the needle pokes for IV's, blood draws and CT's.
I think you can work, but you will be off a minimum 1/2 day every other week sometimes 2 weeks in a row. I need to sleep most of the next day after an infusion. I work for myself at home so this is not a big issue for me.
Tom
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- October 27, 2015 at 7:59 pm
I am on a Trial and get both IPI and NIVO. One of the drugs is a placebo (I think I am getting Opdivo).
I get the IPI once every 3 weeks for 4 infusions and then a follow up one every 3 months. I get NIVO every other week for a year.
I did not have any side effects until my 3rd infusion of NIVO. My side effects are:
1) I have had one rash that lasted 2-3 days and went away. It has not returned.
2) I have has some minor lower back and joint pain. One week it was very bad but I can manage it with Percocets.
3) I do have some swelling on the left side of my chest next to the area where my lymph nodes were removed.
4) I am tired the next day after my infusions.
I have not lost any wt. (gained some). I sleep well. I did get a port because I am sick of all the needle pokes for IV's, blood draws and CT's.
I think you can work, but you will be off a minimum 1/2 day every other week sometimes 2 weeks in a row. I need to sleep most of the next day after an infusion. I work for myself at home so this is not a big issue for me.
Tom
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- October 27, 2015 at 11:49 pm
Thank you everyone so much for your input. This helps so much going forward if needed. Good news. No METS from my brain MRI. We were waiting to hear back on those. So as of now, have a CT biopsy scheduled for Friday to confirm if the swollen lymph node is in fact melanoma. Fingers crossed. Thanks again everyone.
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- October 27, 2015 at 11:49 pm
Thank you everyone so much for your input. This helps so much going forward if needed. Good news. No METS from my brain MRI. We were waiting to hear back on those. So as of now, have a CT biopsy scheduled for Friday to confirm if the swollen lymph node is in fact melanoma. Fingers crossed. Thanks again everyone.
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- October 27, 2015 at 11:49 pm
Thank you everyone so much for your input. This helps so much going forward if needed. Good news. No METS from my brain MRI. We were waiting to hear back on those. So as of now, have a CT biopsy scheduled for Friday to confirm if the swollen lymph node is in fact melanoma. Fingers crossed. Thanks again everyone.
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