› Forums › General Melanoma Community › IPI/NIVO treatment almost 2 weeks ago and having reactions
- This topic has 33 replies, 6 voices, and was last updated 8 years, 5 months ago by
gregor913.
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- November 26, 2015 at 12:06 am
I got my first infusion 2 Friday's ago and started having a small fever (99) this past weekend. I now have a rash over my entire body that itches like crazy. I am able to curb the itching with Sarna and Benadryl spray. I was also having some mild diarrhea that I am able to control fairly well with Imodium. Seems as though within 5-10 minutes after whatever I eat I get a cramping stomach. I'm curious if people that have had side effects if they were similar and how long did it last?
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- November 26, 2015 at 3:07 am
I was on the combo when it was a trial. I had pretty much the exact side effects as you. Taking Zyrtec helped A TON (I actually take a generic store brand). I also used Dove soap. I did exactly what you're doing for the diarrhea, which continued after the combo. Taking a probiotic has helped a lot. Just a heads up, I was kicked off of the combo after 3/4 treatments. Watch your fever and diarrhea – don't be afraid to go in if you have to.
BTW…I am now cancer free, so just ecause you have side effects, even if they get bad, there is hope!
Best of luck!
Ashley
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- November 26, 2015 at 12:58 pm
I find that I can't eat or drink like a regular size meal. I am eating a more bland diet and in smaller portions. This helps a bit with the diarrhea. Only have it after eating meals so I know it's not as bad as some I have heard of uncontrollable. I do get a little winded easier when doing tasks. Right now I am attributing that to that I had a fever the last few days and am recouping. Fever is gone now.
kind of a funny thing about the itching. I can control myself during the day but have been having dreams about itching and wake up finding myself going crazy itching all over. Kind of wonder how long I had been itching away.
How long after the combo did you continue with the diarrhea and rash?
That is so awesome that you are cancer free. This is the first time my doctors have used the word "cured" with melanoma with me and I find it exciting. Worth the sacrifice for sure.
Chris
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- November 26, 2015 at 12:58 pm
I find that I can't eat or drink like a regular size meal. I am eating a more bland diet and in smaller portions. This helps a bit with the diarrhea. Only have it after eating meals so I know it's not as bad as some I have heard of uncontrollable. I do get a little winded easier when doing tasks. Right now I am attributing that to that I had a fever the last few days and am recouping. Fever is gone now.
kind of a funny thing about the itching. I can control myself during the day but have been having dreams about itching and wake up finding myself going crazy itching all over. Kind of wonder how long I had been itching away.
How long after the combo did you continue with the diarrhea and rash?
That is so awesome that you are cancer free. This is the first time my doctors have used the word "cured" with melanoma with me and I find it exciting. Worth the sacrifice for sure.
Chris
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- November 26, 2015 at 12:58 pm
I find that I can't eat or drink like a regular size meal. I am eating a more bland diet and in smaller portions. This helps a bit with the diarrhea. Only have it after eating meals so I know it's not as bad as some I have heard of uncontrollable. I do get a little winded easier when doing tasks. Right now I am attributing that to that I had a fever the last few days and am recouping. Fever is gone now.
kind of a funny thing about the itching. I can control myself during the day but have been having dreams about itching and wake up finding myself going crazy itching all over. Kind of wonder how long I had been itching away.
How long after the combo did you continue with the diarrhea and rash?
That is so awesome that you are cancer free. This is the first time my doctors have used the word "cured" with melanoma with me and I find it exciting. Worth the sacrifice for sure.
Chris
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- November 26, 2015 at 3:07 am
I was on the combo when it was a trial. I had pretty much the exact side effects as you. Taking Zyrtec helped A TON (I actually take a generic store brand). I also used Dove soap. I did exactly what you're doing for the diarrhea, which continued after the combo. Taking a probiotic has helped a lot. Just a heads up, I was kicked off of the combo after 3/4 treatments. Watch your fever and diarrhea – don't be afraid to go in if you have to.
BTW…I am now cancer free, so just ecause you have side effects, even if they get bad, there is hope!
Best of luck!
Ashley
-
- November 26, 2015 at 3:07 am
I was on the combo when it was a trial. I had pretty much the exact side effects as you. Taking Zyrtec helped A TON (I actually take a generic store brand). I also used Dove soap. I did exactly what you're doing for the diarrhea, which continued after the combo. Taking a probiotic has helped a lot. Just a heads up, I was kicked off of the combo after 3/4 treatments. Watch your fever and diarrhea – don't be afraid to go in if you have to.
BTW…I am now cancer free, so just ecause you have side effects, even if they get bad, there is hope!
Best of luck!
Ashley
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- November 26, 2015 at 3:44 am
Did you docs tell you to get in touch with them if you suspected you might be having a reaction? For myself I would contact the doctors, especially knowing that the skin is the largest organ in the body. I'd want to make sure it doesn't get out of hand.
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- November 26, 2015 at 1:04 pm
They did tell me to get in contact with them and I have been tempted to call a couple of times but I wait a few hours and am feeling better. The stomach issue seems to come and go with food intake. Think it's kind of normal from what I have been reading. Doctors are in Houston and I live in Dallas. Have an appt. with an oncologist in my area Dec 8 just to have one closer.
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- November 26, 2015 at 1:04 pm
They did tell me to get in contact with them and I have been tempted to call a couple of times but I wait a few hours and am feeling better. The stomach issue seems to come and go with food intake. Think it's kind of normal from what I have been reading. Doctors are in Houston and I live in Dallas. Have an appt. with an oncologist in my area Dec 8 just to have one closer.
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- November 26, 2015 at 3:58 pm
Hi Bearsworth, the one thing that I have learned over the last two years about the combination is that the side effects are easily managed as long as the doctors treat it early. Some times they might have to skip a treatment or two before starting you back on the meds. I used to think that I should do anything to keep getting access to the drugs and I did not always communicate the full amount of my side effects to my doctors. The top doctors who have seen hundreds of patients on immunotherapy drugs find the side effects easy to manage as long as they catch them early. Diarrhea is one of the main side effects that they look for do to the fact it can lead to severe side effects(Enterocolitis) if not treated early. Dr. Weber and Dr. Sanjiv Agarwala of Temple university did a webcast on Omedlive in Sept of 2015 on this topic. Wishing you the best!!!! Ed
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- November 26, 2015 at 3:58 pm
Hi Bearsworth, the one thing that I have learned over the last two years about the combination is that the side effects are easily managed as long as the doctors treat it early. Some times they might have to skip a treatment or two before starting you back on the meds. I used to think that I should do anything to keep getting access to the drugs and I did not always communicate the full amount of my side effects to my doctors. The top doctors who have seen hundreds of patients on immunotherapy drugs find the side effects easy to manage as long as they catch them early. Diarrhea is one of the main side effects that they look for do to the fact it can lead to severe side effects(Enterocolitis) if not treated early. Dr. Weber and Dr. Sanjiv Agarwala of Temple university did a webcast on Omedlive in Sept of 2015 on this topic. Wishing you the best!!!! Ed
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- November 27, 2015 at 1:25 am
How do you ascertain whether the diarrhea is out of control?
I mean I have had the runs for 10 days and have maybe 10 trips to the loo a day and that is with taking immodium.
I dont have any pain or fever or feel dehydrated but i am wondering if it will ever stop and what to do if it doesnt?
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- November 27, 2015 at 1:25 am
How do you ascertain whether the diarrhea is out of control?
I mean I have had the runs for 10 days and have maybe 10 trips to the loo a day and that is with taking immodium.
I dont have any pain or fever or feel dehydrated but i am wondering if it will ever stop and what to do if it doesnt?
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- November 27, 2015 at 12:20 pm
I'm not sure how to tell if it's out of control but I tried a few tricks yesterday for Thanksgiving and it worked like a charm. About an hour before I ate, I took the Imodium. Did not have an issue all day. Yesterday was obviously one of the more rich meals I have had in a few weeks and I was honestly dreading it for that reason but it worked. Trial and error I guess. In addition, all other days I have been eating very bland. Toast, bananas and soups. Also try a probiotic.
Im not sure what constitutes out of control diarrhea but I have not had that bad of it. Try some of these tricks and see if they work. Everyone's body is different. Good luck to you.
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- November 27, 2015 at 12:20 pm
I'm not sure how to tell if it's out of control but I tried a few tricks yesterday for Thanksgiving and it worked like a charm. About an hour before I ate, I took the Imodium. Did not have an issue all day. Yesterday was obviously one of the more rich meals I have had in a few weeks and I was honestly dreading it for that reason but it worked. Trial and error I guess. In addition, all other days I have been eating very bland. Toast, bananas and soups. Also try a probiotic.
Im not sure what constitutes out of control diarrhea but I have not had that bad of it. Try some of these tricks and see if they work. Everyone's body is different. Good luck to you.
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- November 27, 2015 at 1:57 pm
On the subject that Anon brought up about how do you know if the diarrhea is too bad. I would recommend contacting your Dr.s Nurse, she should be following the clinical trial standards set out by the Drug company. There is an excellent webinar on the subject on Omedlive, you have to join ( no big deal) they don't send you emails afterwards. The webinar has Dr. Weber and Dr. Sanjuv Agarwala of Temple University. The date of the webinar is Sept. 22, 2015. The title is a bit long " A Team based approach to Optimizing outcomes in Melanoma. Managing Immune Response related and Dermatologic side effects in patients being treated with Novel therapies." Hope this is helpfull. Ed
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- November 27, 2015 at 1:57 pm
On the subject that Anon brought up about how do you know if the diarrhea is too bad. I would recommend contacting your Dr.s Nurse, she should be following the clinical trial standards set out by the Drug company. There is an excellent webinar on the subject on Omedlive, you have to join ( no big deal) they don't send you emails afterwards. The webinar has Dr. Weber and Dr. Sanjuv Agarwala of Temple University. The date of the webinar is Sept. 22, 2015. The title is a bit long " A Team based approach to Optimizing outcomes in Melanoma. Managing Immune Response related and Dermatologic side effects in patients being treated with Novel therapies." Hope this is helpfull. Ed
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- November 27, 2015 at 1:57 pm
On the subject that Anon brought up about how do you know if the diarrhea is too bad. I would recommend contacting your Dr.s Nurse, she should be following the clinical trial standards set out by the Drug company. There is an excellent webinar on the subject on Omedlive, you have to join ( no big deal) they don't send you emails afterwards. The webinar has Dr. Weber and Dr. Sanjuv Agarwala of Temple University. The date of the webinar is Sept. 22, 2015. The title is a bit long " A Team based approach to Optimizing outcomes in Melanoma. Managing Immune Response related and Dermatologic side effects in patients being treated with Novel therapies." Hope this is helpfull. Ed
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- November 27, 2015 at 12:20 pm
I'm not sure how to tell if it's out of control but I tried a few tricks yesterday for Thanksgiving and it worked like a charm. About an hour before I ate, I took the Imodium. Did not have an issue all day. Yesterday was obviously one of the more rich meals I have had in a few weeks and I was honestly dreading it for that reason but it worked. Trial and error I guess. In addition, all other days I have been eating very bland. Toast, bananas and soups. Also try a probiotic.
Im not sure what constitutes out of control diarrhea but I have not had that bad of it. Try some of these tricks and see if they work. Everyone's body is different. Good luck to you.
-
- November 27, 2015 at 1:25 am
How do you ascertain whether the diarrhea is out of control?
I mean I have had the runs for 10 days and have maybe 10 trips to the loo a day and that is with taking immodium.
I dont have any pain or fever or feel dehydrated but i am wondering if it will ever stop and what to do if it doesnt?
-
- November 26, 2015 at 3:58 pm
Hi Bearsworth, the one thing that I have learned over the last two years about the combination is that the side effects are easily managed as long as the doctors treat it early. Some times they might have to skip a treatment or two before starting you back on the meds. I used to think that I should do anything to keep getting access to the drugs and I did not always communicate the full amount of my side effects to my doctors. The top doctors who have seen hundreds of patients on immunotherapy drugs find the side effects easy to manage as long as they catch them early. Diarrhea is one of the main side effects that they look for do to the fact it can lead to severe side effects(Enterocolitis) if not treated early. Dr. Weber and Dr. Sanjiv Agarwala of Temple university did a webcast on Omedlive in Sept of 2015 on this topic. Wishing you the best!!!! Ed
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- November 26, 2015 at 6:32 pm
My opinion/three cents is it's worth it to call your doc, before things get out of hand rather than waiting for to see if it gets really bad. For myself I just know these treatments can have serious side effects. I'm actually thinking more of the skin that the GI issues although GI issues are also a biggie for the IPI half of the treatment. I managed to miss all that with IPI alone.
I like the Gold Bond Eczema Relief Skin Protectant Cream, in relation to eczema (mild in my case), not specifically related to immune treatment side effects. It has 2% colloidal oatmeal. Personally I did not find the Sarna lotion helpful when I had skin rashes from high dose IL-2.
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- November 26, 2015 at 6:32 pm
My opinion/three cents is it's worth it to call your doc, before things get out of hand rather than waiting for to see if it gets really bad. For myself I just know these treatments can have serious side effects. I'm actually thinking more of the skin that the GI issues although GI issues are also a biggie for the IPI half of the treatment. I managed to miss all that with IPI alone.
I like the Gold Bond Eczema Relief Skin Protectant Cream, in relation to eczema (mild in my case), not specifically related to immune treatment side effects. It has 2% colloidal oatmeal. Personally I did not find the Sarna lotion helpful when I had skin rashes from high dose IL-2.
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- November 26, 2015 at 6:32 pm
My opinion/three cents is it's worth it to call your doc, before things get out of hand rather than waiting for to see if it gets really bad. For myself I just know these treatments can have serious side effects. I'm actually thinking more of the skin that the GI issues although GI issues are also a biggie for the IPI half of the treatment. I managed to miss all that with IPI alone.
I like the Gold Bond Eczema Relief Skin Protectant Cream, in relation to eczema (mild in my case), not specifically related to immune treatment side effects. It has 2% colloidal oatmeal. Personally I did not find the Sarna lotion helpful when I had skin rashes from high dose IL-2.
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- November 27, 2015 at 12:22 pm
Thanks. I will try the gold bond.
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- November 27, 2015 at 12:22 pm
Thanks. I will try the gold bond.
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- November 28, 2015 at 12:32 am
Hey hope your rash is feeling better. I was just wondering what stage you are since I am 3b and looking into treatment options. Just trying to have all my eggs in the basket. So far i have my treatment options narrowed down to watch and wait, interferon, yervoy, and now im reading about your yervoy/nivo combo. Is IPI/NIVO adjuvant care for stage 3b?
thanks Greg
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- November 28, 2015 at 12:32 am
Hey hope your rash is feeling better. I was just wondering what stage you are since I am 3b and looking into treatment options. Just trying to have all my eggs in the basket. So far i have my treatment options narrowed down to watch and wait, interferon, yervoy, and now im reading about your yervoy/nivo combo. Is IPI/NIVO adjuvant care for stage 3b?
thanks Greg
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- November 28, 2015 at 12:32 am
Hey hope your rash is feeling better. I was just wondering what stage you are since I am 3b and looking into treatment options. Just trying to have all my eggs in the basket. So far i have my treatment options narrowed down to watch and wait, interferon, yervoy, and now im reading about your yervoy/nivo combo. Is IPI/NIVO adjuvant care for stage 3b?
thanks Greg
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- November 27, 2015 at 12:22 pm
Thanks. I will try the gold bond.
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- November 26, 2015 at 1:04 pm
They did tell me to get in contact with them and I have been tempted to call a couple of times but I wait a few hours and am feeling better. The stomach issue seems to come and go with food intake. Think it's kind of normal from what I have been reading. Doctors are in Houston and I live in Dallas. Have an appt. with an oncologist in my area Dec 8 just to have one closer.
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- November 26, 2015 at 3:44 am
Did you docs tell you to get in touch with them if you suspected you might be having a reaction? For myself I would contact the doctors, especially knowing that the skin is the largest organ in the body. I'd want to make sure it doesn't get out of hand.
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- November 26, 2015 at 3:44 am
Did you docs tell you to get in touch with them if you suspected you might be having a reaction? For myself I would contact the doctors, especially knowing that the skin is the largest organ in the body. I'd want to make sure it doesn't get out of hand.
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