› Forums › General Melanoma Community › Stage 3C and they want to do IPI 10 mg
- This topic has 42 replies, 10 voices, and was last updated 8 years, 6 months ago by
Tbailey.
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- October 19, 2016 at 9:01 pm
I did 10mg/kg IPI and 10mg/kg NIVO on a trial stage 3B. Your dr can prescribe 3mg/kg IPI if he chooses. 3mg or 10 mg is at his discretion. Insurance should cover it but ask first.
Typically if a doctor is pushing Interferon you should ask him if he is getting a commission from the drug company. Yes this happens all the time.
You should talk directly with ten people that were given Interferon and I would bet all ten would never do it again. There 1000’s of posts on here about not doing Interferon. It will not cure your cancer. It will not prolong your live but it will get you sick as a dog for one year. -
- October 19, 2016 at 9:01 pm
I did 10mg/kg IPI and 10mg/kg NIVO on a trial stage 3B. Your dr can prescribe 3mg/kg IPI if he chooses. 3mg or 10 mg is at his discretion. Insurance should cover it but ask first.
Typically if a doctor is pushing Interferon you should ask him if he is getting a commission from the drug company. Yes this happens all the time.
You should talk directly with ten people that were given Interferon and I would bet all ten would never do it again. There 1000’s of posts on here about not doing Interferon. It will not cure your cancer. It will not prolong your live but it will get you sick as a dog for one year. -
- October 19, 2016 at 9:01 pm
I did 10mg/kg IPI and 10mg/kg NIVO on a trial stage 3B. Your dr can prescribe 3mg/kg IPI if he chooses. 3mg or 10 mg is at his discretion. Insurance should cover it but ask first.
Typically if a doctor is pushing Interferon you should ask him if he is getting a commission from the drug company. Yes this happens all the time.
You should talk directly with ten people that were given Interferon and I would bet all ten would never do it again. There 1000’s of posts on here about not doing Interferon. It will not cure your cancer. It will not prolong your live but it will get you sick as a dog for one year.-
- October 19, 2016 at 11:16 pm
10mg is the FDA approved dose. Clinical trials for adjuvant therapy were run at 10mg and that is why the approval for stage III is 10mg. But since 3mg is approved for stage IV (based on different trials), doctors MAY prescribe the 3mg in an "off label" protocol. However, not all doctors will do this nor will all insurances pay for "off label" protocols. Look up the numbers on Interferon, they aren't good. IPI isn't great for numbers but it has better numbers than Interferon. You have to do what makes sense to YOU, no one else!
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- October 19, 2016 at 11:16 pm
10mg is the FDA approved dose. Clinical trials for adjuvant therapy were run at 10mg and that is why the approval for stage III is 10mg. But since 3mg is approved for stage IV (based on different trials), doctors MAY prescribe the 3mg in an "off label" protocol. However, not all doctors will do this nor will all insurances pay for "off label" protocols. Look up the numbers on Interferon, they aren't good. IPI isn't great for numbers but it has better numbers than Interferon. You have to do what makes sense to YOU, no one else!
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- October 19, 2016 at 11:16 pm
10mg is the FDA approved dose. Clinical trials for adjuvant therapy were run at 10mg and that is why the approval for stage III is 10mg. But since 3mg is approved for stage IV (based on different trials), doctors MAY prescribe the 3mg in an "off label" protocol. However, not all doctors will do this nor will all insurances pay for "off label" protocols. Look up the numbers on Interferon, they aren't good. IPI isn't great for numbers but it has better numbers than Interferon. You have to do what makes sense to YOU, no one else!
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- October 20, 2016 at 3:20 am
I am stage 3C also and my doctor at University of Michigan (a melanoma specialist) will not prescribe ipi for me. He, too, states that it is too dangerous when there is not proven active disease. It is a strange fluke that the FDA has approved the 10mg for stage 3 yet the mg for stage 4. He would allow me to do interferon although he did not encourage it. Basically he has recommended the watch and wait approach.
I did get a second opinion at MD Anderson and the melanoma specialist that I saw there concurred with my doctor at U of M. She said that she does give ipi at the 3mg/kg dose to a select few of her stage 3 patients, but said 70% of her collegues do not give ipi to stage 3.
Possibly when more studies are done and more data is available the recommendations will chage. I have seen many accounts here of stage 3 patients on ipi who have remained NED yet many others who have progressed to stage 4 on ipi, so I think there is really no way to know.
Peggy
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- October 20, 2016 at 3:20 am
I am stage 3C also and my doctor at University of Michigan (a melanoma specialist) will not prescribe ipi for me. He, too, states that it is too dangerous when there is not proven active disease. It is a strange fluke that the FDA has approved the 10mg for stage 3 yet the mg for stage 4. He would allow me to do interferon although he did not encourage it. Basically he has recommended the watch and wait approach.
I did get a second opinion at MD Anderson and the melanoma specialist that I saw there concurred with my doctor at U of M. She said that she does give ipi at the 3mg/kg dose to a select few of her stage 3 patients, but said 70% of her collegues do not give ipi to stage 3.
Possibly when more studies are done and more data is available the recommendations will chage. I have seen many accounts here of stage 3 patients on ipi who have remained NED yet many others who have progressed to stage 4 on ipi, so I think there is really no way to know.
Peggy
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- October 20, 2016 at 3:20 am
I am stage 3C also and my doctor at University of Michigan (a melanoma specialist) will not prescribe ipi for me. He, too, states that it is too dangerous when there is not proven active disease. It is a strange fluke that the FDA has approved the 10mg for stage 3 yet the mg for stage 4. He would allow me to do interferon although he did not encourage it. Basically he has recommended the watch and wait approach.
I did get a second opinion at MD Anderson and the melanoma specialist that I saw there concurred with my doctor at U of M. She said that she does give ipi at the 3mg/kg dose to a select few of her stage 3 patients, but said 70% of her collegues do not give ipi to stage 3.
Possibly when more studies are done and more data is available the recommendations will chage. I have seen many accounts here of stage 3 patients on ipi who have remained NED yet many others who have progressed to stage 4 on ipi, so I think there is really no way to know.
Peggy
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- October 20, 2016 at 5:22 am
There are many things to consider when making this decision. But a study demonstrating prolonged survival in Stage III melanoma patients using ipi as adjuvant was just published:
For what it's worth. Wishing you all my best. Celeste
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- October 20, 2016 at 5:22 am
There are many things to consider when making this decision. But a study demonstrating prolonged survival in Stage III melanoma patients using ipi as adjuvant was just published:
For what it's worth. Wishing you all my best. Celeste
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- October 20, 2016 at 5:22 am
There are many things to consider when making this decision. But a study demonstrating prolonged survival in Stage III melanoma patients using ipi as adjuvant was just published:
For what it's worth. Wishing you all my best. Celeste
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- October 20, 2016 at 2:43 pm
Hi Anon, for your reading pleasure I will give you a couple of articles that cover why Ipi at 10mg for stage 3. I hope they will be helpfull. Ed http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(15)70122-1/abstract https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-016-0571-0
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- October 20, 2016 at 2:43 pm
Hi Anon, for your reading pleasure I will give you a couple of articles that cover why Ipi at 10mg for stage 3. I hope they will be helpfull. Ed http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(15)70122-1/abstract https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-016-0571-0
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- October 20, 2016 at 2:46 pm
Sorry about the first link. If you google search EORTC 18071, you will find articles about the study of Ipi at 10mg/kg for stage 3 folks. Best Wishes!!!Ed
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- October 20, 2016 at 2:46 pm
Sorry about the first link. If you google search EORTC 18071, you will find articles about the study of Ipi at 10mg/kg for stage 3 folks. Best Wishes!!!Ed
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- October 20, 2016 at 2:46 pm
Sorry about the first link. If you google search EORTC 18071, you will find articles about the study of Ipi at 10mg/kg for stage 3 folks. Best Wishes!!!Ed
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- October 20, 2016 at 2:43 pm
Hi Anon, for your reading pleasure I will give you a couple of articles that cover why Ipi at 10mg for stage 3. I hope they will be helpfull. Ed http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(15)70122-1/abstract https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-016-0571-0
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- October 20, 2016 at 7:22 pm
Hello Anon,
This debate always puzzles me. On the one hand, interferon, with infusions, and then self-injections over the course of an entire year will yield a virtual 100% rate of adverse reations. Basically you will be sick with bad flu-like symptoms for the whole year. Survial statistics are overwheliming. You will not prolong your life going this route. Then on the other hand, Yervoy 10mg (or better yet push for 3mg). You may or may not get serious adverse reations, and if you do, many of them can be treated. You are done after 4 doses, 3 weeks apart and may get periodic additional infusions several months apart. Many people such as myself did the 10mg with almost no side-effects whatsoever, although I did not respond. The folks more likely to respond do seem to suffer more side-effects, but many are now NED, or at least have had a fairly durable response that has bridged a gap to the "next big thing". You want to just stay alive as breakthrough treatments keep coming. In the meantime quality of life is much better. Early stager's are focused on dying. Once you have survived a while at stage IV you just keep going, looking for that magic bullet, and try to live your life positively rather than focusing on the negative. Bottom line is doctors who are fixated on interferon appear to be living in the past. Get new doctors.
Gary
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- October 20, 2016 at 7:22 pm
Hello Anon,
This debate always puzzles me. On the one hand, interferon, with infusions, and then self-injections over the course of an entire year will yield a virtual 100% rate of adverse reations. Basically you will be sick with bad flu-like symptoms for the whole year. Survial statistics are overwheliming. You will not prolong your life going this route. Then on the other hand, Yervoy 10mg (or better yet push for 3mg). You may or may not get serious adverse reations, and if you do, many of them can be treated. You are done after 4 doses, 3 weeks apart and may get periodic additional infusions several months apart. Many people such as myself did the 10mg with almost no side-effects whatsoever, although I did not respond. The folks more likely to respond do seem to suffer more side-effects, but many are now NED, or at least have had a fairly durable response that has bridged a gap to the "next big thing". You want to just stay alive as breakthrough treatments keep coming. In the meantime quality of life is much better. Early stager's are focused on dying. Once you have survived a while at stage IV you just keep going, looking for that magic bullet, and try to live your life positively rather than focusing on the negative. Bottom line is doctors who are fixated on interferon appear to be living in the past. Get new doctors.
Gary
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- October 20, 2016 at 7:39 pm
WOW. Another lecture from another "old timer".. I am new here and am most definitely focused on living. I don't know if you know how you are turning people who really need the experience and knowledge that you could offer but who are turned off by this parental tone that you are dispensing. It is really disheartening.
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- October 20, 2016 at 7:39 pm
WOW. Another lecture from another "old timer".. I am new here and am most definitely focused on living. I don't know if you know how you are turning people who really need the experience and knowledge that you could offer but who are turned off by this parental tone that you are dispensing. It is really disheartening.
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- October 20, 2016 at 7:39 pm
WOW. Another lecture from another "old timer".. I am new here and am most definitely focused on living. I don't know if you know how you are turning people who really need the experience and knowledge that you could offer but who are turned off by this parental tone that you are dispensing. It is really disheartening.
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- October 20, 2016 at 9:12 pm
I understand that interferon has flu-like side effects in everyone, but how many people die from interferon side effects? People die from ipi side effects (which, you are right, do not occur or are minimal in many people, unlike interferon). I think that's why many doctors are hesitant to prescribe ipi at stage 3, even though the risks of death can be minimized with doctors who are well-trained to monitor and treat these side effects.
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- October 20, 2016 at 9:12 pm
I understand that interferon has flu-like side effects in everyone, but how many people die from interferon side effects? People die from ipi side effects (which, you are right, do not occur or are minimal in many people, unlike interferon). I think that's why many doctors are hesitant to prescribe ipi at stage 3, even though the risks of death can be minimized with doctors who are well-trained to monitor and treat these side effects.
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- October 20, 2016 at 10:50 pm
Hi Anon, just wanted to give you some articles for your consideration about interferon. Some recent and some not so recent!!!!Best Wishes!!!Ed http://www.theglobeandmail.com/life/niall-mcgee-didnt-believe-in-depression-until-cancer-meds-put-him-in-a-suicidal-spiral/article24660218/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1255968/ https://books.google.ca/books?id=_4SwO2dHcAIC&pg=PA1311&lpg=PA1311&dq=Melanoma+deaths+suicide+interferon&source=bl&ots=SWU0UA8LvL&sig=csqoBNphjSU57Ha8oclUqH7MYHc&hl=en&sa=X&ved=0ahUKEwjN3PzHterPAhUo6YMKHQgbBMUQ6AEIVTAJ#v=onepage&q=Melanoma%20deaths%20suicide%20interferon&f=falsehttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181938/
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- October 20, 2016 at 10:50 pm
Hi Anon, just wanted to give you some articles for your consideration about interferon. Some recent and some not so recent!!!!Best Wishes!!!Ed http://www.theglobeandmail.com/life/niall-mcgee-didnt-believe-in-depression-until-cancer-meds-put-him-in-a-suicidal-spiral/article24660218/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1255968/ https://books.google.ca/books?id=_4SwO2dHcAIC&pg=PA1311&lpg=PA1311&dq=Melanoma+deaths+suicide+interferon&source=bl&ots=SWU0UA8LvL&sig=csqoBNphjSU57Ha8oclUqH7MYHc&hl=en&sa=X&ved=0ahUKEwjN3PzHterPAhUo6YMKHQgbBMUQ6AEIVTAJ#v=onepage&q=Melanoma%20deaths%20suicide%20interferon&f=falsehttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181938/
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- October 20, 2016 at 10:53 pm
Sorry about the second link, maybe just do a Google search on topic of Interferon and suicide, depression, side effects. Ed
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- October 20, 2016 at 10:53 pm
Sorry about the second link, maybe just do a Google search on topic of Interferon and suicide, depression, side effects. Ed
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- October 20, 2016 at 10:53 pm
Sorry about the second link, maybe just do a Google search on topic of Interferon and suicide, depression, side effects. Ed
-
- October 20, 2016 at 10:50 pm
Hi Anon, just wanted to give you some articles for your consideration about interferon. Some recent and some not so recent!!!!Best Wishes!!!Ed http://www.theglobeandmail.com/life/niall-mcgee-didnt-believe-in-depression-until-cancer-meds-put-him-in-a-suicidal-spiral/article24660218/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1255968/ https://books.google.ca/books?id=_4SwO2dHcAIC&pg=PA1311&lpg=PA1311&dq=Melanoma+deaths+suicide+interferon&source=bl&ots=SWU0UA8LvL&sig=csqoBNphjSU57Ha8oclUqH7MYHc&hl=en&sa=X&ved=0ahUKEwjN3PzHterPAhUo6YMKHQgbBMUQ6AEIVTAJ#v=onepage&q=Melanoma%20deaths%20suicide%20interferon&f=falsehttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181938/
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- October 20, 2016 at 9:12 pm
I understand that interferon has flu-like side effects in everyone, but how many people die from interferon side effects? People die from ipi side effects (which, you are right, do not occur or are minimal in many people, unlike interferon). I think that's why many doctors are hesitant to prescribe ipi at stage 3, even though the risks of death can be minimized with doctors who are well-trained to monitor and treat these side effects.
-
- October 20, 2016 at 7:22 pm
Hello Anon,
This debate always puzzles me. On the one hand, interferon, with infusions, and then self-injections over the course of an entire year will yield a virtual 100% rate of adverse reations. Basically you will be sick with bad flu-like symptoms for the whole year. Survial statistics are overwheliming. You will not prolong your life going this route. Then on the other hand, Yervoy 10mg (or better yet push for 3mg). You may or may not get serious adverse reations, and if you do, many of them can be treated. You are done after 4 doses, 3 weeks apart and may get periodic additional infusions several months apart. Many people such as myself did the 10mg with almost no side-effects whatsoever, although I did not respond. The folks more likely to respond do seem to suffer more side-effects, but many are now NED, or at least have had a fairly durable response that has bridged a gap to the "next big thing". You want to just stay alive as breakthrough treatments keep coming. In the meantime quality of life is much better. Early stager's are focused on dying. Once you have survived a while at stage IV you just keep going, looking for that magic bullet, and try to live your life positively rather than focusing on the negative. Bottom line is doctors who are fixated on interferon appear to be living in the past. Get new doctors.
Gary
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- October 21, 2016 at 1:04 pm
I was Stage 3B, diagnosed November 2014. Both my surgical and medical oncologists recommended that I do not do interferon due to high chance of side effects and low chance of any benefit. They instead recommended that I wait until Yervoy was approved for adjuvant use.
Fast foward to this year, and I've had a power port placed and three infusions of 10mg concentration of Yervoy. Only adverse reactions so far have been slight fatigue, body aches, and a little diarrhea for about a week after each infusion. Other than that I have had no problems.
From what I've read and what I've been told, Yervoy, since it is approved by the FDA, should at least be attempted in patients in an adjuvant setting. If you have adverse reactions, all you have to do is stop getting infusions. Patients have to be very mindful of any new symptoms that arise after infusions. If something comes up, tell your doctor. If it gets unbearable, your doctor will reassess. Most of the side effects of Yervoy, if caught early, are fully reversible.
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- October 21, 2016 at 1:04 pm
I was Stage 3B, diagnosed November 2014. Both my surgical and medical oncologists recommended that I do not do interferon due to high chance of side effects and low chance of any benefit. They instead recommended that I wait until Yervoy was approved for adjuvant use.
Fast foward to this year, and I've had a power port placed and three infusions of 10mg concentration of Yervoy. Only adverse reactions so far have been slight fatigue, body aches, and a little diarrhea for about a week after each infusion. Other than that I have had no problems.
From what I've read and what I've been told, Yervoy, since it is approved by the FDA, should at least be attempted in patients in an adjuvant setting. If you have adverse reactions, all you have to do is stop getting infusions. Patients have to be very mindful of any new symptoms that arise after infusions. If something comes up, tell your doctor. If it gets unbearable, your doctor will reassess. Most of the side effects of Yervoy, if caught early, are fully reversible.
-
- October 21, 2016 at 1:04 pm
I was Stage 3B, diagnosed November 2014. Both my surgical and medical oncologists recommended that I do not do interferon due to high chance of side effects and low chance of any benefit. They instead recommended that I wait until Yervoy was approved for adjuvant use.
Fast foward to this year, and I've had a power port placed and three infusions of 10mg concentration of Yervoy. Only adverse reactions so far have been slight fatigue, body aches, and a little diarrhea for about a week after each infusion. Other than that I have had no problems.
From what I've read and what I've been told, Yervoy, since it is approved by the FDA, should at least be attempted in patients in an adjuvant setting. If you have adverse reactions, all you have to do is stop getting infusions. Patients have to be very mindful of any new symptoms that arise after infusions. If something comes up, tell your doctor. If it gets unbearable, your doctor will reassess. Most of the side effects of Yervoy, if caught early, are fully reversible.
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- October 21, 2016 at 3:03 pm
My husband did a clinical trial at Stage IV of 10mg/kg of IPI and he did not have adverse effects from it either and he has been NED for over 4 years.
Each person reacts differently to medications as well as melanoma.
If you want to read more about his journey check out his profile.
Judy (loving wife of Gene Stage IV and now NED for over 4 years)
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- October 21, 2016 at 3:03 pm
My husband did a clinical trial at Stage IV of 10mg/kg of IPI and he did not have adverse effects from it either and he has been NED for over 4 years.
Each person reacts differently to medications as well as melanoma.
If you want to read more about his journey check out his profile.
Judy (loving wife of Gene Stage IV and now NED for over 4 years)
-
- October 21, 2016 at 3:03 pm
My husband did a clinical trial at Stage IV of 10mg/kg of IPI and he did not have adverse effects from it either and he has been NED for over 4 years.
Each person reacts differently to medications as well as melanoma.
If you want to read more about his journey check out his profile.
Judy (loving wife of Gene Stage IV and now NED for over 4 years)
-
- October 21, 2016 at 4:58 pm
I am Stage 3 Anal with one groin lymph node. They have suggested the Nivolumab , 4 doses over 8 Weeks. They also said the Ipi/Nivo . I am healthy and 45 first time ever being sick with more than the flu.
I am reading online and Nivo sounds to good to be true. She also suggested Chemo. My Doctor is Dr Amaria at MD Anderson. I am brand new to all of this terminalogy and I am wanting to make the best and right decision. Any help would be much appreciated.
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- October 21, 2016 at 4:58 pm
I am Stage 3 Anal with one groin lymph node. They have suggested the Nivolumab , 4 doses over 8 Weeks. They also said the Ipi/Nivo . I am healthy and 45 first time ever being sick with more than the flu.
I am reading online and Nivo sounds to good to be true. She also suggested Chemo. My Doctor is Dr Amaria at MD Anderson. I am brand new to all of this terminalogy and I am wanting to make the best and right decision. Any help would be much appreciated.
-
- October 21, 2016 at 4:58 pm
I am Stage 3 Anal with one groin lymph node. They have suggested the Nivolumab , 4 doses over 8 Weeks. They also said the Ipi/Nivo . I am healthy and 45 first time ever being sick with more than the flu.
I am reading online and Nivo sounds to good to be true. She also suggested Chemo. My Doctor is Dr Amaria at MD Anderson. I am brand new to all of this terminalogy and I am wanting to make the best and right decision. Any help would be much appreciated.
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