› Forums › General Melanoma Community › Beginning clinical trial E1609 this week!
- This topic has 48 replies, 10 voices, and was last updated 10 years, 3 months ago by
Marianne quinn.
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- February 1, 2014 at 7:25 pm
My name is Heidi and I'm 27 years old. I was diagnosed with melanoma at the Elmendorf AFB hospital in Anchorage, Alaska in October 2013. The dermatologist performed a shave biopsy, and assured me that he didn't think anything was wrong. My husband was in the middle of getting out of the Army the week I was diagnosed, so my dermatologist referred me to the Vanderbilt Cancer Center in Nashville, TN because we were moving to Knoxville, TN. I had a great surgical oncologist there who performed the WLE and sentinel node biopsy. Unfortunately, the biopsy found 4 positive lymph nodes of the 8 that he removed. Two weeks later, I had a radical neck dissection, where no more new positive lymph nodes were found. Unfortunately, during the radical neck dissection, my doctor severed my spinal accessory nerve and I'm having some difficulties with that. Vanderbilt told me that their clinical trial was closed, so I was referred to the Thompson Cancer Center here in Knoxville, TN. Thankfully, they accepted me and I was randomized for the high dose Yervoy infusions. I have my port placement on Monday and then have my first infusion on Thursday. I've read through a lot of the forum posts on here and I have learned a lot. Does anyone have any advice for me as I begin? Thank you so much!
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- February 1, 2014 at 9:24 pm
No advice to share as I have not done Yervoy (yet) – just wanted to say good luck.Kevin
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- February 1, 2014 at 9:24 pm
No advice to share as I have not done Yervoy (yet) – just wanted to say good luck.Kevin
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- February 1, 2014 at 9:24 pm
No advice to share as I have not done Yervoy (yet) – just wanted to say good luck.Kevin
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- February 2, 2014 at 1:23 am
Hi Heidi,
Cant offer too much with respect to Yervoy. However, I did want to add for your consideration a couple of thoughts. Vanderbilt is a great institution. As you're being treated, you may want to consider having a melanoma expert, if you do. to have one already. It's a tricky disease and having a good team around you is critical. Next, stage 3 melanoma is not the diagnosis we hope for. However, as you look at the stats you will see that the 5 yer survival rate is good. It's a marathon! Do your research and be your own advocate. Many encouraging g treatments are bothavailable and being developed! Good luck Heidi!!!
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- February 2, 2014 at 1:54 am
Thank you for responding, SABKLYN! I couldn't have been more pleased with Vanderbilt. I wish I could have done the clinical trial there, especially since I didn't get put in the Interferon arm. I have an appointment scheduled in April with the oncologist who performed my surgeries, but since I am doing the clinical trial locally, I'm also seeing an oncologist here.
I've never known anyone that was diagnosed with melanoma, so it's been difficult finding someone to talk to about all of this. I have a very supportive husband and rest of my family, but obviously they don't understand and can't relate. I try to maintain a balance between being fully aware of what's going on vs. living in a state of fear of what may or may not happen.
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- February 2, 2014 at 1:54 am
Thank you for responding, SABKLYN! I couldn't have been more pleased with Vanderbilt. I wish I could have done the clinical trial there, especially since I didn't get put in the Interferon arm. I have an appointment scheduled in April with the oncologist who performed my surgeries, but since I am doing the clinical trial locally, I'm also seeing an oncologist here.
I've never known anyone that was diagnosed with melanoma, so it's been difficult finding someone to talk to about all of this. I have a very supportive husband and rest of my family, but obviously they don't understand and can't relate. I try to maintain a balance between being fully aware of what's going on vs. living in a state of fear of what may or may not happen.
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- February 2, 2014 at 1:54 am
Thank you for responding, SABKLYN! I couldn't have been more pleased with Vanderbilt. I wish I could have done the clinical trial there, especially since I didn't get put in the Interferon arm. I have an appointment scheduled in April with the oncologist who performed my surgeries, but since I am doing the clinical trial locally, I'm also seeing an oncologist here.
I've never known anyone that was diagnosed with melanoma, so it's been difficult finding someone to talk to about all of this. I have a very supportive husband and rest of my family, but obviously they don't understand and can't relate. I try to maintain a balance between being fully aware of what's going on vs. living in a state of fear of what may or may not happen.
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- February 2, 2014 at 2:14 am
Heidi, I was diagnosed in November of 2011 and also have stage 3 disease. I have been NED since my lymph node dissection on 2/6/13. It can be terrifying but from this site you can get perspective and information that will help you both get the info you need as well as give you a sense of perspective fom others to whom the same hand has been dealt. Vanderbiltmis great! Mi started my journey at Emory. I was not totally comfortable so I went to as Sloan Kettering. Wherever you go and whomever is treating you make sure all your questions are being answered and concerns addressed. The diagnosis sucks but there are so many good things happening with both approved treatments and clinical trials. Keep looking forward and be your own advocate!
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- February 2, 2014 at 2:14 am
Heidi, I was diagnosed in November of 2011 and also have stage 3 disease. I have been NED since my lymph node dissection on 2/6/13. It can be terrifying but from this site you can get perspective and information that will help you both get the info you need as well as give you a sense of perspective fom others to whom the same hand has been dealt. Vanderbiltmis great! Mi started my journey at Emory. I was not totally comfortable so I went to as Sloan Kettering. Wherever you go and whomever is treating you make sure all your questions are being answered and concerns addressed. The diagnosis sucks but there are so many good things happening with both approved treatments and clinical trials. Keep looking forward and be your own advocate!
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- February 2, 2014 at 2:14 am
Heidi, I was diagnosed in November of 2011 and also have stage 3 disease. I have been NED since my lymph node dissection on 2/6/13. It can be terrifying but from this site you can get perspective and information that will help you both get the info you need as well as give you a sense of perspective fom others to whom the same hand has been dealt. Vanderbiltmis great! Mi started my journey at Emory. I was not totally comfortable so I went to as Sloan Kettering. Wherever you go and whomever is treating you make sure all your questions are being answered and concerns addressed. The diagnosis sucks but there are so many good things happening with both approved treatments and clinical trials. Keep looking forward and be your own advocate!
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- February 2, 2014 at 1:23 am
Hi Heidi,
Cant offer too much with respect to Yervoy. However, I did want to add for your consideration a couple of thoughts. Vanderbilt is a great institution. As you're being treated, you may want to consider having a melanoma expert, if you do. to have one already. It's a tricky disease and having a good team around you is critical. Next, stage 3 melanoma is not the diagnosis we hope for. However, as you look at the stats you will see that the 5 yer survival rate is good. It's a marathon! Do your research and be your own advocate. Many encouraging g treatments are bothavailable and being developed! Good luck Heidi!!!
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- February 2, 2014 at 1:23 am
Hi Heidi,
Cant offer too much with respect to Yervoy. However, I did want to add for your consideration a couple of thoughts. Vanderbilt is a great institution. As you're being treated, you may want to consider having a melanoma expert, if you do. to have one already. It's a tricky disease and having a good team around you is critical. Next, stage 3 melanoma is not the diagnosis we hope for. However, as you look at the stats you will see that the 5 yer survival rate is good. It's a marathon! Do your research and be your own advocate. Many encouraging g treatments are bothavailable and being developed! Good luck Heidi!!!
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- February 2, 2014 at 6:11 am
http://www.yervoy.com/patient/before-getting-yervoy.ipilimumabaspx
dO YOU KNKOW IF YOU WILL BE GETTING STRAIGHT iPI (yERVOY) or be in one of the combo trials?
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- February 2, 2014 at 6:11 am
http://www.yervoy.com/patient/before-getting-yervoy.ipilimumabaspx
dO YOU KNKOW IF YOU WILL BE GETTING STRAIGHT iPI (yERVOY) or be in one of the combo trials?
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- February 2, 2014 at 6:11 am
http://www.yervoy.com/patient/before-getting-yervoy.ipilimumabaspx
dO YOU KNKOW IF YOU WILL BE GETTING STRAIGHT iPI (yERVOY) or be in one of the combo trials?
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- February 2, 2014 at 8:06 pm
I am getting straight Yervoy. I will be receiving 10 mg/kg for each infusion.
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- February 2, 2014 at 8:06 pm
I am getting straight Yervoy. I will be receiving 10 mg/kg for each infusion.
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- February 2, 2014 at 8:06 pm
I am getting straight Yervoy. I will be receiving 10 mg/kg for each infusion.
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- February 2, 2014 at 6:25 am
Heidi:
I am glad you found this forum. As you have already seen, you will uncover a wealth of information here.
I was just in a meeting with some patients and a couple of top melanoma doctors. We had a side-bar conversation about this specific trial and we all agreed that it is a good and important study. Ipi has been around long enough now that centers like Thompson are comfortable with managing the drug. I am sure they have gone over side effects with you. Some people have very little difficulty tolerating ipi (Yervoy) while others are completely wiped out by it. I met one person who could only take one dose, but that is the exception. The key is that you be very honest with the treatment team about any of the side effects you experience. Do not try to tough it out. One of the common side effects is colitis. This is usually managed well by steroids, but it needs to be addressed early. Some people have failed to report their problems and then the situation gets much more difficult to get under control.
The fear for this, and other treatments, is that if you tell the doctor about problems he or she may just pull you off the study. This rarely happens these days. Studies typically allow for reduced dosage, recovery periods, etc. Again, good communication with the treatment team is essential.
Of course, you have a decent chance that even if you do nothing at all your melanoma is all gone. That certainly would be the hope. Now, with the trial, you are increasing your chances that the cancer will stay away.
By the way, melanoma is the leading cancer diagnosis for women in their 20's. We have a number of volunteers at the MRF who are exactly that profile, and I just spoke with a woman whose 27 year old nephew has just been diagnosed Stage III. The point is you are not alone. If you want to try to connect with some others your age let me know and we can try to make that happen.
Tim–MRF
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- February 2, 2014 at 6:25 am
Heidi:
I am glad you found this forum. As you have already seen, you will uncover a wealth of information here.
I was just in a meeting with some patients and a couple of top melanoma doctors. We had a side-bar conversation about this specific trial and we all agreed that it is a good and important study. Ipi has been around long enough now that centers like Thompson are comfortable with managing the drug. I am sure they have gone over side effects with you. Some people have very little difficulty tolerating ipi (Yervoy) while others are completely wiped out by it. I met one person who could only take one dose, but that is the exception. The key is that you be very honest with the treatment team about any of the side effects you experience. Do not try to tough it out. One of the common side effects is colitis. This is usually managed well by steroids, but it needs to be addressed early. Some people have failed to report their problems and then the situation gets much more difficult to get under control.
The fear for this, and other treatments, is that if you tell the doctor about problems he or she may just pull you off the study. This rarely happens these days. Studies typically allow for reduced dosage, recovery periods, etc. Again, good communication with the treatment team is essential.
Of course, you have a decent chance that even if you do nothing at all your melanoma is all gone. That certainly would be the hope. Now, with the trial, you are increasing your chances that the cancer will stay away.
By the way, melanoma is the leading cancer diagnosis for women in their 20's. We have a number of volunteers at the MRF who are exactly that profile, and I just spoke with a woman whose 27 year old nephew has just been diagnosed Stage III. The point is you are not alone. If you want to try to connect with some others your age let me know and we can try to make that happen.
Tim–MRF
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- February 2, 2014 at 6:25 am
Heidi:
I am glad you found this forum. As you have already seen, you will uncover a wealth of information here.
I was just in a meeting with some patients and a couple of top melanoma doctors. We had a side-bar conversation about this specific trial and we all agreed that it is a good and important study. Ipi has been around long enough now that centers like Thompson are comfortable with managing the drug. I am sure they have gone over side effects with you. Some people have very little difficulty tolerating ipi (Yervoy) while others are completely wiped out by it. I met one person who could only take one dose, but that is the exception. The key is that you be very honest with the treatment team about any of the side effects you experience. Do not try to tough it out. One of the common side effects is colitis. This is usually managed well by steroids, but it needs to be addressed early. Some people have failed to report their problems and then the situation gets much more difficult to get under control.
The fear for this, and other treatments, is that if you tell the doctor about problems he or she may just pull you off the study. This rarely happens these days. Studies typically allow for reduced dosage, recovery periods, etc. Again, good communication with the treatment team is essential.
Of course, you have a decent chance that even if you do nothing at all your melanoma is all gone. That certainly would be the hope. Now, with the trial, you are increasing your chances that the cancer will stay away.
By the way, melanoma is the leading cancer diagnosis for women in their 20's. We have a number of volunteers at the MRF who are exactly that profile, and I just spoke with a woman whose 27 year old nephew has just been diagnosed Stage III. The point is you are not alone. If you want to try to connect with some others your age let me know and we can try to make that happen.
Tim–MRF
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- February 2, 2014 at 2:43 pm
Tim, thank you for pointing out that most clinical trials now allow for reduced dosage, recovery periods, etc for people who are experiencing severe side-effects. I, for one, didn't realize that that was part of some study protocols– I thought it was just individual doctors allowing some flexibility.
As you say, "toughing it out" with side-effects results in needless suffering and might even result in more severe and life-threatening conditions. In the future, we on MPIP can encourage people who are looking into clinical trials to ask the study coordinators what will be done for side effects and whether dose reductions and/or recovery periods are allowed. That's good to know. Thanks!
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- February 2, 2014 at 2:43 pm
Tim, thank you for pointing out that most clinical trials now allow for reduced dosage, recovery periods, etc for people who are experiencing severe side-effects. I, for one, didn't realize that that was part of some study protocols– I thought it was just individual doctors allowing some flexibility.
As you say, "toughing it out" with side-effects results in needless suffering and might even result in more severe and life-threatening conditions. In the future, we on MPIP can encourage people who are looking into clinical trials to ask the study coordinators what will be done for side effects and whether dose reductions and/or recovery periods are allowed. That's good to know. Thanks!
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- February 2, 2014 at 2:43 pm
Tim, thank you for pointing out that most clinical trials now allow for reduced dosage, recovery periods, etc for people who are experiencing severe side-effects. I, for one, didn't realize that that was part of some study protocols– I thought it was just individual doctors allowing some flexibility.
As you say, "toughing it out" with side-effects results in needless suffering and might even result in more severe and life-threatening conditions. In the future, we on MPIP can encourage people who are looking into clinical trials to ask the study coordinators what will be done for side effects and whether dose reductions and/or recovery periods are allowed. That's good to know. Thanks!
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- February 2, 2014 at 8:08 pm
Thank you so much for the info! I'm pretty nervous about side effects, but I'll just have to take all of that as it comes.
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- February 2, 2014 at 8:08 pm
Thank you so much for the info! I'm pretty nervous about side effects, but I'll just have to take all of that as it comes.
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- February 2, 2014 at 8:08 pm
Thank you so much for the info! I'm pretty nervous about side effects, but I'll just have to take all of that as it comes.
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- February 2, 2014 at 2:18 pm
Best wishes to you, Heidi. I hope the Yervoy is a grand slam to melanoma. Also, thank you to your husband for his support to our country and to all your support as well!
Terrie
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- February 2, 2014 at 3:37 pm
Hey Heidi,
Sorry for all that you are going through and the need for seeking such resources regarding melanoma, but very glad you have found some. I am a bit older than you, but have kids in college in Knoxville and live in Chattanooga. The world is always smaller than we realize. Tim is very right. Speak to your docs about all symptoms you may experience. Immunotherapies (like Yervoy) have taught docs a lot about the need to adjust outcome measures and treatments in trials and often adjust things so that patients can continue therapy as long as possible. I completed an anti-PD1 trial 8 months ago. It began in 2010. At the beginning, folks were removed due to any progression. But then….their tumors continued to shrink with no additional treatment! So, docs figured out immunotherapies can take longer to work in some people and they needed to give them a longer grace period and look more at percentages of growth, rather than simple increase in any tumor size. At any rate, over that period of time, I signed many updated versions of my trial agreement as they added amendments and treatment arms. I am glad that all the ratties have managed to help docs and researchers treat the next wave of patients even better. There are many articles regarding yervoy on my blog, though I have never taken it, if you are interested. (just google..chaotically precise…and you can enter 'ipi' or 'yervoy' in the top left search box.) I wish you the very best in your treatment. Hang in there. Celeste
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- February 2, 2014 at 3:37 pm
Hey Heidi,
Sorry for all that you are going through and the need for seeking such resources regarding melanoma, but very glad you have found some. I am a bit older than you, but have kids in college in Knoxville and live in Chattanooga. The world is always smaller than we realize. Tim is very right. Speak to your docs about all symptoms you may experience. Immunotherapies (like Yervoy) have taught docs a lot about the need to adjust outcome measures and treatments in trials and often adjust things so that patients can continue therapy as long as possible. I completed an anti-PD1 trial 8 months ago. It began in 2010. At the beginning, folks were removed due to any progression. But then….their tumors continued to shrink with no additional treatment! So, docs figured out immunotherapies can take longer to work in some people and they needed to give them a longer grace period and look more at percentages of growth, rather than simple increase in any tumor size. At any rate, over that period of time, I signed many updated versions of my trial agreement as they added amendments and treatment arms. I am glad that all the ratties have managed to help docs and researchers treat the next wave of patients even better. There are many articles regarding yervoy on my blog, though I have never taken it, if you are interested. (just google..chaotically precise…and you can enter 'ipi' or 'yervoy' in the top left search box.) I wish you the very best in your treatment. Hang in there. Celeste
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- February 2, 2014 at 3:37 pm
Hey Heidi,
Sorry for all that you are going through and the need for seeking such resources regarding melanoma, but very glad you have found some. I am a bit older than you, but have kids in college in Knoxville and live in Chattanooga. The world is always smaller than we realize. Tim is very right. Speak to your docs about all symptoms you may experience. Immunotherapies (like Yervoy) have taught docs a lot about the need to adjust outcome measures and treatments in trials and often adjust things so that patients can continue therapy as long as possible. I completed an anti-PD1 trial 8 months ago. It began in 2010. At the beginning, folks were removed due to any progression. But then….their tumors continued to shrink with no additional treatment! So, docs figured out immunotherapies can take longer to work in some people and they needed to give them a longer grace period and look more at percentages of growth, rather than simple increase in any tumor size. At any rate, over that period of time, I signed many updated versions of my trial agreement as they added amendments and treatment arms. I am glad that all the ratties have managed to help docs and researchers treat the next wave of patients even better. There are many articles regarding yervoy on my blog, though I have never taken it, if you are interested. (just google..chaotically precise…and you can enter 'ipi' or 'yervoy' in the top left search box.) I wish you the very best in your treatment. Hang in there. Celeste
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- February 2, 2014 at 8:10 pm
Hi, Celeste! It is a small world! I am not originally from Knoxville but I'm learning to love it here. 🙂
My doctors have mentioned that if I do experience side effects, that there are methods to minimize them. Hopefully my young age gives me an advantage. I will definitely be checking out your blog.
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- February 2, 2014 at 8:10 pm
Hi, Celeste! It is a small world! I am not originally from Knoxville but I'm learning to love it here. 🙂
My doctors have mentioned that if I do experience side effects, that there are methods to minimize them. Hopefully my young age gives me an advantage. I will definitely be checking out your blog.
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- February 2, 2014 at 8:10 pm
Hi, Celeste! It is a small world! I am not originally from Knoxville but I'm learning to love it here. 🙂
My doctors have mentioned that if I do experience side effects, that there are methods to minimize them. Hopefully my young age gives me an advantage. I will definitely be checking out your blog.
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- February 2, 2014 at 10:57 pm
Hello Heidi,
There are a lot of good people here that are very willing to help and who have been through a lot or are caregivers that have experienced much.
While my husband is much older than you he started the Clinical Trial for 10mg/kg. Yervoy (Ipi) infusions and GM-CSF self injections in March 2011 after going to stage IV. By October 2012 he was NED (no evidence of disease). He just recently quit the clinical trial after being on it for 2 years and 9 months. He got the initial 4 infusions in the 12 weeks and then continued on the maintenance phase for 1 infusion every 12 weeks. The GM-CSF he did 14 days on and 7 days off during the whole time.
You can read more about his experience on his profile if you would like.
As questions come to mind don't hestitate to ask them as many here will be able to help you.
Judy (loving wife of Gene Stage IV and now NED)
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- February 2, 2014 at 10:57 pm
Hello Heidi,
There are a lot of good people here that are very willing to help and who have been through a lot or are caregivers that have experienced much.
While my husband is much older than you he started the Clinical Trial for 10mg/kg. Yervoy (Ipi) infusions and GM-CSF self injections in March 2011 after going to stage IV. By October 2012 he was NED (no evidence of disease). He just recently quit the clinical trial after being on it for 2 years and 9 months. He got the initial 4 infusions in the 12 weeks and then continued on the maintenance phase for 1 infusion every 12 weeks. The GM-CSF he did 14 days on and 7 days off during the whole time.
You can read more about his experience on his profile if you would like.
As questions come to mind don't hestitate to ask them as many here will be able to help you.
Judy (loving wife of Gene Stage IV and now NED)
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- February 2, 2014 at 10:57 pm
Hello Heidi,
There are a lot of good people here that are very willing to help and who have been through a lot or are caregivers that have experienced much.
While my husband is much older than you he started the Clinical Trial for 10mg/kg. Yervoy (Ipi) infusions and GM-CSF self injections in March 2011 after going to stage IV. By October 2012 he was NED (no evidence of disease). He just recently quit the clinical trial after being on it for 2 years and 9 months. He got the initial 4 infusions in the 12 weeks and then continued on the maintenance phase for 1 infusion every 12 weeks. The GM-CSF he did 14 days on and 7 days off during the whole time.
You can read more about his experience on his profile if you would like.
As questions come to mind don't hestitate to ask them as many here will be able to help you.
Judy (loving wife of Gene Stage IV and now NED)
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- February 4, 2014 at 12:53 am
I think my husband is in the same trial. He has had two doses of 10 mg yervoy. He is doing very well. He has a mild rash that is controlled with antihistamines and lotion to keep his skin moist. He has had mild GI issues but no diarrhea,. A little fatigue.. I put him on a diverticulitis diet- no nuts, seeds, popcorn. He is making smoothies with yogurt and bananas . He seems to crave peanut butter and has lost his sweet tooth. So far so good. Good luck. I will keep you updated,. Incidentally, he did not need a port.
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- February 4, 2014 at 12:53 am
I think my husband is in the same trial. He has had two doses of 10 mg yervoy. He is doing very well. He has a mild rash that is controlled with antihistamines and lotion to keep his skin moist. He has had mild GI issues but no diarrhea,. A little fatigue.. I put him on a diverticulitis diet- no nuts, seeds, popcorn. He is making smoothies with yogurt and bananas . He seems to crave peanut butter and has lost his sweet tooth. So far so good. Good luck. I will keep you updated,. Incidentally, he did not need a port.
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- February 4, 2014 at 12:53 am
I think my husband is in the same trial. He has had two doses of 10 mg yervoy. He is doing very well. He has a mild rash that is controlled with antihistamines and lotion to keep his skin moist. He has had mild GI issues but no diarrhea,. A little fatigue.. I put him on a diverticulitis diet- no nuts, seeds, popcorn. He is making smoothies with yogurt and bananas . He seems to crave peanut butter and has lost his sweet tooth. So far so good. Good luck. I will keep you updated,. Incidentally, he did not need a port.
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