› Forums › General Melanoma Community › stage 4, starting ipi/nivo mid February
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brendon.
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- February 4, 2017 at 3:27 am
Hi, I'm new here and have been reading a lot here already. My husband is diagnosed with stage 4 melanoma in the beginning of January. I thought he'd had a stroke, because he started being confused and had double vision. MRI showed mets in brain (one big, some smaller ones), CT and PET showed mets in kidney, adrenal, thyroid and lung, and some in lymf nodes in body. Had WBRT for 10 days and that seemed to work, he got less confused and is more clear again, luckily….. quite scary when he was so confused, he also had swelling of the brain and steroids helped with that. Now we are tapering off the steroids in order to start with ipi/nivo. We are a little nervous about that, read some good reports and dramatic ones. My question is, is there anything you can do to support the body during the immunotherapy, any additional therapies, certain foods, whatever may help to prevent side-effects. Any experiences?
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- February 4, 2017 at 4:37 am
Hi Judy, as you have been reading on this site, I am sure you have discovered the importance of seeing a "Melanoma Specialist" to treat the disease. A regular Oncologist is good (if that is all you have available), but a specialist is familiar will all of the new drugs, therapies that are current and what is on the horizon. I am surprised that the doc recommended "whole brain" radiation, as the effectiveness is really not that good compared to Gamma Knife radiation. My Dad did 5 treatments of NIVO and now is doing 4 treatments of IPI. He just has his first one and has had NO side effects, nor did he have any with NIVO. I am guessing the side effects will come with his next treatment. I am sure the more experienced ones will chime in with more info, it sounds like you have a good plan started.
Best. Jen
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- February 4, 2017 at 4:44 pm
Hi Jen, we have an oncologist here with experience, but no specialist in melanoma. The oncologist DID recommend GammaKnife, even as two neurosurgeons (incl the one that does GK) and a 3rd expert, but Health Insurance denied THREE times, as they thought Steven has TOO much tumors already and it wasn't according to 'protocol'….very distressing as apparantly they think he's ready to die with so much tumors in head and body…. Anyway, so that;s why we ended up with WBRT. And luckily it seems to have had effect. Since Steven is doing pretty well with all his tumors and has s good state of health, they recommended the combi of ipi/nivo. Thanks for your response this forum has been very helpful.
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- February 4, 2017 at 4:44 pm
Hi Jen, we have an oncologist here with experience, but no specialist in melanoma. The oncologist DID recommend GammaKnife, even as two neurosurgeons (incl the one that does GK) and a 3rd expert, but Health Insurance denied THREE times, as they thought Steven has TOO much tumors already and it wasn't according to 'protocol'….very distressing as apparantly they think he's ready to die with so much tumors in head and body…. Anyway, so that;s why we ended up with WBRT. And luckily it seems to have had effect. Since Steven is doing pretty well with all his tumors and has s good state of health, they recommended the combi of ipi/nivo. Thanks for your response this forum has been very helpful.
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- February 4, 2017 at 4:44 pm
Hi Jen, we have an oncologist here with experience, but no specialist in melanoma. The oncologist DID recommend GammaKnife, even as two neurosurgeons (incl the one that does GK) and a 3rd expert, but Health Insurance denied THREE times, as they thought Steven has TOO much tumors already and it wasn't according to 'protocol'….very distressing as apparantly they think he's ready to die with so much tumors in head and body…. Anyway, so that;s why we ended up with WBRT. And luckily it seems to have had effect. Since Steven is doing pretty well with all his tumors and has s good state of health, they recommended the combi of ipi/nivo. Thanks for your response this forum has been very helpful.
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- February 4, 2017 at 4:37 am
Hi Judy, as you have been reading on this site, I am sure you have discovered the importance of seeing a "Melanoma Specialist" to treat the disease. A regular Oncologist is good (if that is all you have available), but a specialist is familiar will all of the new drugs, therapies that are current and what is on the horizon. I am surprised that the doc recommended "whole brain" radiation, as the effectiveness is really not that good compared to Gamma Knife radiation. My Dad did 5 treatments of NIVO and now is doing 4 treatments of IPI. He just has his first one and has had NO side effects, nor did he have any with NIVO. I am guessing the side effects will come with his next treatment. I am sure the more experienced ones will chime in with more info, it sounds like you have a good plan started.
Best. Jen
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- February 4, 2017 at 4:37 am
Hi Judy, as you have been reading on this site, I am sure you have discovered the importance of seeing a "Melanoma Specialist" to treat the disease. A regular Oncologist is good (if that is all you have available), but a specialist is familiar will all of the new drugs, therapies that are current and what is on the horizon. I am surprised that the doc recommended "whole brain" radiation, as the effectiveness is really not that good compared to Gamma Knife radiation. My Dad did 5 treatments of NIVO and now is doing 4 treatments of IPI. He just has his first one and has had NO side effects, nor did he have any with NIVO. I am guessing the side effects will come with his next treatment. I am sure the more experienced ones will chime in with more info, it sounds like you have a good plan started.
Best. Jen
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- February 4, 2017 at 5:05 pm
Hi Judy,
So sorry that you are here, but your husband is lucky to have an advocate for him. First, good plan to do the ipi/nivo combo. Remember some side-effects are expected and often indicate response so hang tough and treat reactions as needed. More importantly, given Steven's advanced condition, I would suggest you consider traveling, if need be to see a melanoma specialist. Let us know where you live and someone will offer good advice. I travel very, very far and at great expense, yet I'm sure it's the only reason I am here today. I get most treatments locally, but under the direction of the specialist who I see periodically as needed. This is serious business and you need to resolve to do what you must to make it happen. Best in the battle.
Gary
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- February 4, 2017 at 5:15 pm
I can attest to Gary's statement being true. Gary and I go to the same university hospital for our specialists (even though he lives very very far from here) and I have been denied a few times for things and my mel specialist team took care of insurance and got approvals faster than I've ever seen any other doctor. I know my situation would look a lot different if I was still with a general oncologist, especially when it comes to insurance approvals.
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- February 4, 2017 at 5:36 pm
Hi Jenn and Gary, the neurosurgeons who advised the Gamma Knife are experts in this field and they even got colleagues (oncology, radiology, neurosurgeons) in to help assure the health insurance of the need for GK, including an independent third expert etc (especially since on of the tumors is in the middle brain and could cause hydrocephalie), but it didnt help, three times a NO since Steven has too much tumors going on already they said and that's according to guidelines they use. Anyway, we have to deal with it now and going for the ipi/nivo combi with good hope. We are in West Montana, USA.
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- February 4, 2017 at 6:38 pm
…forgot to say, 3 days after diagnosis we flew to Spokane WA to the Gamma Knife center and had consultations with the neurosurgeons over there. In the beginning there was a lot of worry about all the tumors in his brain and neurological symptoms, therefore in the beginning we dealt more with neurosurgeons than oncologist. When we didn;t get the GK, we went back to Montana and started working with the oncologist over there and the radiation oncologist (WBRT). I am goig to talk with our oncologist to see how much experience she has in this field and with the ipi/nico combo therapy.
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- February 6, 2017 at 3:39 am
The main thing now while he is on Ipi/Nivo is how familiar the oncologist is with the side effects of this treatment. I was given an echocardiogram before starting it because myocarditis is one of the more serious side effects that can occur, so that's something that should happen, a base reading of his heart and periodic tests or at least have a base reading so if symptoms of mycarditis comes up they can compare to what his heart looked like before starting. The oncologist should know how to treat these immune related side effects and what to test for when certain symptoms come up. Knowing the oncologist can properly and quickly treat a serious side effect is very important. If Washington is the closest place to travel, I would check out Seattle hospitals for a melanoma specialist, doesn't hurt to at least have one on the list of docs to have someone to consult with when you want a second opinion with an expert in mel.
Glad your husband is doing a lot better since his WBR, wishing him all the best and for a good response to Ipi/Nivo.
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- February 14, 2017 at 1:37 pm
Regarding Jenn's comment about Seattle, I recommend the Seattle Cancer Care Alliance (which is a partnership between University of Washington Medicine, Fred Hutch Research Institute). They have a well-respected Melanoma Clinic – I see Dr. John Thompson there.
Incidentally, I am having my first ipi/nivo infusions there tomorrow.
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- February 14, 2017 at 1:37 pm
Regarding Jenn's comment about Seattle, I recommend the Seattle Cancer Care Alliance (which is a partnership between University of Washington Medicine, Fred Hutch Research Institute). They have a well-respected Melanoma Clinic – I see Dr. John Thompson there.
Incidentally, I am having my first ipi/nivo infusions there tomorrow.
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- February 14, 2017 at 1:37 pm
Regarding Jenn's comment about Seattle, I recommend the Seattle Cancer Care Alliance (which is a partnership between University of Washington Medicine, Fred Hutch Research Institute). They have a well-respected Melanoma Clinic – I see Dr. John Thompson there.
Incidentally, I am having my first ipi/nivo infusions there tomorrow.
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- February 6, 2017 at 3:39 am
The main thing now while he is on Ipi/Nivo is how familiar the oncologist is with the side effects of this treatment. I was given an echocardiogram before starting it because myocarditis is one of the more serious side effects that can occur, so that's something that should happen, a base reading of his heart and periodic tests or at least have a base reading so if symptoms of mycarditis comes up they can compare to what his heart looked like before starting. The oncologist should know how to treat these immune related side effects and what to test for when certain symptoms come up. Knowing the oncologist can properly and quickly treat a serious side effect is very important. If Washington is the closest place to travel, I would check out Seattle hospitals for a melanoma specialist, doesn't hurt to at least have one on the list of docs to have someone to consult with when you want a second opinion with an expert in mel.
Glad your husband is doing a lot better since his WBR, wishing him all the best and for a good response to Ipi/Nivo.
-
- February 6, 2017 at 3:39 am
The main thing now while he is on Ipi/Nivo is how familiar the oncologist is with the side effects of this treatment. I was given an echocardiogram before starting it because myocarditis is one of the more serious side effects that can occur, so that's something that should happen, a base reading of his heart and periodic tests or at least have a base reading so if symptoms of mycarditis comes up they can compare to what his heart looked like before starting. The oncologist should know how to treat these immune related side effects and what to test for when certain symptoms come up. Knowing the oncologist can properly and quickly treat a serious side effect is very important. If Washington is the closest place to travel, I would check out Seattle hospitals for a melanoma specialist, doesn't hurt to at least have one on the list of docs to have someone to consult with when you want a second opinion with an expert in mel.
Glad your husband is doing a lot better since his WBR, wishing him all the best and for a good response to Ipi/Nivo.
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- February 4, 2017 at 6:38 pm
…forgot to say, 3 days after diagnosis we flew to Spokane WA to the Gamma Knife center and had consultations with the neurosurgeons over there. In the beginning there was a lot of worry about all the tumors in his brain and neurological symptoms, therefore in the beginning we dealt more with neurosurgeons than oncologist. When we didn;t get the GK, we went back to Montana and started working with the oncologist over there and the radiation oncologist (WBRT). I am goig to talk with our oncologist to see how much experience she has in this field and with the ipi/nico combo therapy.
-
- February 4, 2017 at 6:38 pm
…forgot to say, 3 days after diagnosis we flew to Spokane WA to the Gamma Knife center and had consultations with the neurosurgeons over there. In the beginning there was a lot of worry about all the tumors in his brain and neurological symptoms, therefore in the beginning we dealt more with neurosurgeons than oncologist. When we didn;t get the GK, we went back to Montana and started working with the oncologist over there and the radiation oncologist (WBRT). I am goig to talk with our oncologist to see how much experience she has in this field and with the ipi/nico combo therapy.
-
- February 4, 2017 at 5:36 pm
Hi Jenn and Gary, the neurosurgeons who advised the Gamma Knife are experts in this field and they even got colleagues (oncology, radiology, neurosurgeons) in to help assure the health insurance of the need for GK, including an independent third expert etc (especially since on of the tumors is in the middle brain and could cause hydrocephalie), but it didnt help, three times a NO since Steven has too much tumors going on already they said and that's according to guidelines they use. Anyway, we have to deal with it now and going for the ipi/nivo combi with good hope. We are in West Montana, USA.
-
- February 4, 2017 at 5:36 pm
Hi Jenn and Gary, the neurosurgeons who advised the Gamma Knife are experts in this field and they even got colleagues (oncology, radiology, neurosurgeons) in to help assure the health insurance of the need for GK, including an independent third expert etc (especially since on of the tumors is in the middle brain and could cause hydrocephalie), but it didnt help, three times a NO since Steven has too much tumors going on already they said and that's according to guidelines they use. Anyway, we have to deal with it now and going for the ipi/nivo combi with good hope. We are in West Montana, USA.
-
- February 4, 2017 at 5:15 pm
I can attest to Gary's statement being true. Gary and I go to the same university hospital for our specialists (even though he lives very very far from here) and I have been denied a few times for things and my mel specialist team took care of insurance and got approvals faster than I've ever seen any other doctor. I know my situation would look a lot different if I was still with a general oncologist, especially when it comes to insurance approvals.
-
- February 4, 2017 at 5:15 pm
I can attest to Gary's statement being true. Gary and I go to the same university hospital for our specialists (even though he lives very very far from here) and I have been denied a few times for things and my mel specialist team took care of insurance and got approvals faster than I've ever seen any other doctor. I know my situation would look a lot different if I was still with a general oncologist, especially when it comes to insurance approvals.
-
- February 4, 2017 at 5:05 pm
Hi Judy,
So sorry that you are here, but your husband is lucky to have an advocate for him. First, good plan to do the ipi/nivo combo. Remember some side-effects are expected and often indicate response so hang tough and treat reactions as needed. More importantly, given Steven's advanced condition, I would suggest you consider traveling, if need be to see a melanoma specialist. Let us know where you live and someone will offer good advice. I travel very, very far and at great expense, yet I'm sure it's the only reason I am here today. I get most treatments locally, but under the direction of the specialist who I see periodically as needed. This is serious business and you need to resolve to do what you must to make it happen. Best in the battle.
Gary
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- February 4, 2017 at 5:05 pm
Hi Judy,
So sorry that you are here, but your husband is lucky to have an advocate for him. First, good plan to do the ipi/nivo combo. Remember some side-effects are expected and often indicate response so hang tough and treat reactions as needed. More importantly, given Steven's advanced condition, I would suggest you consider traveling, if need be to see a melanoma specialist. Let us know where you live and someone will offer good advice. I travel very, very far and at great expense, yet I'm sure it's the only reason I am here today. I get most treatments locally, but under the direction of the specialist who I see periodically as needed. This is serious business and you need to resolve to do what you must to make it happen. Best in the battle.
Gary
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- February 5, 2017 at 1:19 pm
Hi Judy,
Firstly, so glad the WBR has had a good effect, that's the main thing. The ipi/nivo combo is by far the best treatment available at this time and even though there can be side effects, the Drs would not have recommended it if they didn't think your husband could handle it plus they are getting very experienced on how to deal with side effects now.
At this point, it doesn't matter where you are located this would be the best option available. It may be worth getting an appointment at a top melanoma centre to have an introduction, if at any point you need to start considering clinical trials then there would be more on offer. Hopefully, the combo will sort things out for you.
Good luck!
Maria
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- February 5, 2017 at 1:19 pm
Hi Judy,
Firstly, so glad the WBR has had a good effect, that's the main thing. The ipi/nivo combo is by far the best treatment available at this time and even though there can be side effects, the Drs would not have recommended it if they didn't think your husband could handle it plus they are getting very experienced on how to deal with side effects now.
At this point, it doesn't matter where you are located this would be the best option available. It may be worth getting an appointment at a top melanoma centre to have an introduction, if at any point you need to start considering clinical trials then there would be more on offer. Hopefully, the combo will sort things out for you.
Good luck!
Maria
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- February 5, 2017 at 1:19 pm
Hi Judy,
Firstly, so glad the WBR has had a good effect, that's the main thing. The ipi/nivo combo is by far the best treatment available at this time and even though there can be side effects, the Drs would not have recommended it if they didn't think your husband could handle it plus they are getting very experienced on how to deal with side effects now.
At this point, it doesn't matter where you are located this would be the best option available. It may be worth getting an appointment at a top melanoma centre to have an introduction, if at any point you need to start considering clinical trials then there would be more on offer. Hopefully, the combo will sort things out for you.
Good luck!
Maria
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- February 6, 2017 at 3:09 am
Hi again Maria, it looks like you have gotten some great responses here. Just another thought, if you were able to at least consult with a Mel Specialist (actually meet face to face) perhaps your onc. at home could get in touch with the specialist and give further recommendations. Just a thought. My Dad was thought to have only 8 mets, but at the time that they actually did the gamma knife, they found 15!
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- February 6, 2017 at 3:09 am
Hi again Maria, it looks like you have gotten some great responses here. Just another thought, if you were able to at least consult with a Mel Specialist (actually meet face to face) perhaps your onc. at home could get in touch with the specialist and give further recommendations. Just a thought. My Dad was thought to have only 8 mets, but at the time that they actually did the gamma knife, they found 15!
-
- February 6, 2017 at 3:09 am
Hi again Maria, it looks like you have gotten some great responses here. Just another thought, if you were able to at least consult with a Mel Specialist (actually meet face to face) perhaps your onc. at home could get in touch with the specialist and give further recommendations. Just a thought. My Dad was thought to have only 8 mets, but at the time that they actually did the gamma knife, they found 15!
-
- February 6, 2017 at 9:47 pm
Today, we talked to our oncogist and Steven is ready to go for the combo treatment starting Thursday nivo/ipi. She explained about the possible side effects and how she will monitor and what we have to do. We're a little nervous about it, but have good hopes, he is a very healthy man, but now very tired because of the WBRT. So I keep making him super healthy foods, soups, smoothies etc. Keeping fingers crossed.
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- February 6, 2017 at 9:47 pm
Today, we talked to our oncogist and Steven is ready to go for the combo treatment starting Thursday nivo/ipi. She explained about the possible side effects and how she will monitor and what we have to do. We're a little nervous about it, but have good hopes, he is a very healthy man, but now very tired because of the WBRT. So I keep making him super healthy foods, soups, smoothies etc. Keeping fingers crossed.
-
- February 6, 2017 at 9:47 pm
Today, we talked to our oncogist and Steven is ready to go for the combo treatment starting Thursday nivo/ipi. She explained about the possible side effects and how she will monitor and what we have to do. We're a little nervous about it, but have good hopes, he is a very healthy man, but now very tired because of the WBRT. So I keep making him super healthy foods, soups, smoothies etc. Keeping fingers crossed.
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