› Forums › General Melanoma Community › Starting Yervoy on Tuesday
- This topic has 19 replies, 6 voices, and was last updated 12 years ago by
kittylara.
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- August 31, 2011 at 1:53 am
Hello.
I wanted to post an update for those who may have read my recent posts. I was taken off of the MDX-1106 trial about a month ago as I had more than the 20% tumor growth allowed. A brain MRI at that time also showed a 2-3mm lesion suspicious for a tiny metastasis. I had SRS last Wednesday to treat the spot in the brain. I am scheduled to start Yervoy next week at Loyola with Dr. Clark.
Hello.
I wanted to post an update for those who may have read my recent posts. I was taken off of the MDX-1106 trial about a month ago as I had more than the 20% tumor growth allowed. A brain MRI at that time also showed a 2-3mm lesion suspicious for a tiny metastasis. I had SRS last Wednesday to treat the spot in the brain. I am scheduled to start Yervoy next week at Loyola with Dr. Clark.
I currently have a tumor in my right adrenal gland. That is the only major thing that we see going on at this time.I have some spots that show up in my lungs, but they have been stable and never biopsied. So, we are moving on with Yervoy now hoping that it will do the trick and shrink this tumor and kill off any other melanoma cells floating around.
If any of you have started Ipi recently, I'd love to e-mail with you so we can compare notes. =)
~Angela
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- August 31, 2011 at 3:31 am
Hi Angela!
My father started Ipi 3 weeks ago..goes for his 2nd treatment tomorrow. He too has a tumor on his right adrenal gland and his left as well plus one on his abdomen and 4 on his brain. He had SRS at Elmhurst Hospital near Chicago a couple months ago and 2 have disappeared, the other 2 stayed the same. Hopefully next brain MRI is clear.
Keep me posted on any side effects you have! My dad had excruciating abdominal pain and awful night sweats on days 5&6 but has not been in that much pain since then.
I'll be praying for you!
Maggie
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- August 31, 2011 at 3:31 am
Hi Angela!
My father started Ipi 3 weeks ago..goes for his 2nd treatment tomorrow. He too has a tumor on his right adrenal gland and his left as well plus one on his abdomen and 4 on his brain. He had SRS at Elmhurst Hospital near Chicago a couple months ago and 2 have disappeared, the other 2 stayed the same. Hopefully next brain MRI is clear.
Keep me posted on any side effects you have! My dad had excruciating abdominal pain and awful night sweats on days 5&6 but has not been in that much pain since then.
I'll be praying for you!
Maggie
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- August 31, 2011 at 10:18 am
Angela, I have had a quick look at your profile and note that you have tried IL-2. Sorry to read that you have had disease progression while on the MDX-1106.
It is good that you will be starting treatment with Yervoy next week. However, I feel that one needs to be aware of the fact that it is unlikely to completely eradicate all of the melanoma cells that may be present in your bloodstream. As you may know, the current approach that many people take is to try one treatment while researching the next therapy – just in case melanoma continues to be a problem.
I wonder if a tumour has been tested for the BRAF gene mutation, as treatment with a BRAF inhibitor is another treatment option.
Hopefully others will tell you of their experiences with Yervoy.
Best wishes
Frank from Australia
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- August 31, 2011 at 11:43 am
On Thursday, I'm set to have my second infusion of ipi. I must admit, there has been too many postings on this site with negative news about Yervoy. At this stage in the game, it's an option and not a high percentage that it will work. I have alot of hope for this drug because I know that some people are responders and then ones that respond, continue to have tumours shrink and disappear. The very lucky ones can keep this disease in remission for at least 4 years (according to the presentation from Dr. Wolchuk) spelling?
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- August 31, 2011 at 11:34 pm
Hi Lisa.
Yeah, it seems like there aren't real great thing about Yervoy on here recently. But, it does work for some, so we just have to hope and pray that it's us!! I have done several immunotherapies and my most recent melanoma specialist feels strongly that Yervoy will have some benefit for me. I sure hope that he's right!
I have read the stories of some complete responders. There was one lady who had all of her hair turn grey because of it. That would be a small price to pay, huh?
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- August 31, 2011 at 11:34 pm
Hi Lisa.
Yeah, it seems like there aren't real great thing about Yervoy on here recently. But, it does work for some, so we just have to hope and pray that it's us!! I have done several immunotherapies and my most recent melanoma specialist feels strongly that Yervoy will have some benefit for me. I sure hope that he's right!
I have read the stories of some complete responders. There was one lady who had all of her hair turn grey because of it. That would be a small price to pay, huh?
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- August 31, 2011 at 11:43 am
On Thursday, I'm set to have my second infusion of ipi. I must admit, there has been too many postings on this site with negative news about Yervoy. At this stage in the game, it's an option and not a high percentage that it will work. I have alot of hope for this drug because I know that some people are responders and then ones that respond, continue to have tumours shrink and disappear. The very lucky ones can keep this disease in remission for at least 4 years (according to the presentation from Dr. Wolchuk) spelling?
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- August 31, 2011 at 11:29 pm
Hi Frank.
Thanks for the reply. I do not have the BRAF mutation and I am not HLA2 positive. So, Yervoy is the next thing in line for me. I'm kind of at the point now that I don't know what the next option will be if it doesn't work for me. We had talked with the doctors about just removing my adrenal gland since that is the only spot we know fopr sure is melanoma. But doctors agreed that it made more sense to try and treat systemically, so that's what I'm doing. I'm guessing that if Ipi doesn't work for me, we'll try to go to NIH and see what they have to offer. But, here's to hoping and praying that Yervoy does the trick! =)
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- September 1, 2011 at 7:01 am
Angela, I think that there are at least 2 options that are worth considering. The first
one of these is surgery. Although local surgery for a systemic disease has been a
controversial topic, it has recently been shown to have definite benefits. This is
because resection of any area of melanoma has the effect of reducing the overall tumour
burden, and may improve one's prognosis. Therefore, I feel that an operation to remove
your adrenal gland tumour might be beneficial.The second thing to research is TIL treatment (adoptive cell therapy) which is available
at the NIH and some other places. Here is a link to a recent thread about this:
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/randomized-til-tbi-nihHope this helps.
Frank from Australia
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- September 1, 2011 at 11:09 pm
Thanks for the information, Frank. I am only somewhat familiar with TIL, so I'll have to read up on that.
I also think that surgery makes sense, and it is what I wanted to do prior to starting Yervoy, but I talked with two Melanoma specialists who both had the same opinion. They said that they feel I may have benefit from the layering effects of the multiple immunotherapies I have undergone. They were concerned that if I had surgery, it could throw the immune system out of whack. They said they have seen in the past where surgery has a traumatic effect on the body and sometimes a new met will appear and start growing rapidly and then it can take time for the immune system to try and catch up. It is an interesting theory and I can understand that because I do believe that stress has an effect on the body's ability to fight.
So, I guess we'll cross that bridge of surgery when and if that time comes.
~Angela
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- September 1, 2011 at 11:09 pm
Thanks for the information, Frank. I am only somewhat familiar with TIL, so I'll have to read up on that.
I also think that surgery makes sense, and it is what I wanted to do prior to starting Yervoy, but I talked with two Melanoma specialists who both had the same opinion. They said that they feel I may have benefit from the layering effects of the multiple immunotherapies I have undergone. They were concerned that if I had surgery, it could throw the immune system out of whack. They said they have seen in the past where surgery has a traumatic effect on the body and sometimes a new met will appear and start growing rapidly and then it can take time for the immune system to try and catch up. It is an interesting theory and I can understand that because I do believe that stress has an effect on the body's ability to fight.
So, I guess we'll cross that bridge of surgery when and if that time comes.
~Angela
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- September 1, 2011 at 7:01 am
Angela, I think that there are at least 2 options that are worth considering. The first
one of these is surgery. Although local surgery for a systemic disease has been a
controversial topic, it has recently been shown to have definite benefits. This is
because resection of any area of melanoma has the effect of reducing the overall tumour
burden, and may improve one's prognosis. Therefore, I feel that an operation to remove
your adrenal gland tumour might be beneficial.The second thing to research is TIL treatment (adoptive cell therapy) which is available
at the NIH and some other places. Here is a link to a recent thread about this:
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/randomized-til-tbi-nihHope this helps.
Frank from Australia
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- August 31, 2011 at 11:29 pm
Hi Frank.
Thanks for the reply. I do not have the BRAF mutation and I am not HLA2 positive. So, Yervoy is the next thing in line for me. I'm kind of at the point now that I don't know what the next option will be if it doesn't work for me. We had talked with the doctors about just removing my adrenal gland since that is the only spot we know fopr sure is melanoma. But doctors agreed that it made more sense to try and treat systemically, so that's what I'm doing. I'm guessing that if Ipi doesn't work for me, we'll try to go to NIH and see what they have to offer. But, here's to hoping and praying that Yervoy does the trick! =)
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- August 31, 2011 at 10:18 am
Angela, I have had a quick look at your profile and note that you have tried IL-2. Sorry to read that you have had disease progression while on the MDX-1106.
It is good that you will be starting treatment with Yervoy next week. However, I feel that one needs to be aware of the fact that it is unlikely to completely eradicate all of the melanoma cells that may be present in your bloodstream. As you may know, the current approach that many people take is to try one treatment while researching the next therapy – just in case melanoma continues to be a problem.
I wonder if a tumour has been tested for the BRAF gene mutation, as treatment with a BRAF inhibitor is another treatment option.
Hopefully others will tell you of their experiences with Yervoy.
Best wishes
Frank from Australia
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- September 1, 2011 at 3:30 am
Hi, my husband had his second Yervoy treatment last Wednesday. His side effects started about ten days into the first treatment. They are mostly abominal pain and discomfort, tierdness and loss of appetite. He was diagnosed with mm July 14, no primary found. There are metastises to the brain and lung and chest area. His brain mets were gamma knifed and we will get an updated MRI in a couple of weeks.
Good luck with your first Yervoy treatment.
Lise
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- April 20, 2012 at 4:06 am
Hi,
I was just recently diagnosed with metastatic melanoma. I had a melanoma removed by wide excision from my chest wall in 1999. Did all the routine CT check ups for 10 years with no evidence of recurrence. Then on Thursday, March 1, I was sitting at my computer and felt an enlarged lymph node in my right neck area. Had CT scans on Monday and had the node biopsied on Wednesday Diagnosis, melanoma with mets to right neck and lower abdomen. I started my Yervoy treatment on Tuesday, April 10. Didn't have any side effects until the following Monday when the fatigue set in and then on Wednesday, pain in my lower abdomen (where one of the larger nodes is). Hopefully this is a sign that the Yervoy is working and starting to kill the cells. Can only hope. And I heartily agree with lots of PRAYER. Will keep you updated on treatments and side effects as I continue the therapy. Good luck to all.
Kitty
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- April 20, 2012 at 4:06 am
Hi,
I was just recently diagnosed with metastatic melanoma. I had a melanoma removed by wide excision from my chest wall in 1999. Did all the routine CT check ups for 10 years with no evidence of recurrence. Then on Thursday, March 1, I was sitting at my computer and felt an enlarged lymph node in my right neck area. Had CT scans on Monday and had the node biopsied on Wednesday Diagnosis, melanoma with mets to right neck and lower abdomen. I started my Yervoy treatment on Tuesday, April 10. Didn't have any side effects until the following Monday when the fatigue set in and then on Wednesday, pain in my lower abdomen (where one of the larger nodes is). Hopefully this is a sign that the Yervoy is working and starting to kill the cells. Can only hope. And I heartily agree with lots of PRAYER. Will keep you updated on treatments and side effects as I continue the therapy. Good luck to all.
Kitty
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- April 20, 2012 at 4:06 am
Hi,
I was just recently diagnosed with metastatic melanoma. I had a melanoma removed by wide excision from my chest wall in 1999. Did all the routine CT check ups for 10 years with no evidence of recurrence. Then on Thursday, March 1, I was sitting at my computer and felt an enlarged lymph node in my right neck area. Had CT scans on Monday and had the node biopsied on Wednesday Diagnosis, melanoma with mets to right neck and lower abdomen. I started my Yervoy treatment on Tuesday, April 10. Didn't have any side effects until the following Monday when the fatigue set in and then on Wednesday, pain in my lower abdomen (where one of the larger nodes is). Hopefully this is a sign that the Yervoy is working and starting to kill the cells. Can only hope. And I heartily agree with lots of PRAYER. Will keep you updated on treatments and side effects as I continue the therapy. Good luck to all.
Kitty
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- September 1, 2011 at 3:30 am
Hi, my husband had his second Yervoy treatment last Wednesday. His side effects started about ten days into the first treatment. They are mostly abominal pain and discomfort, tierdness and loss of appetite. He was diagnosed with mm July 14, no primary found. There are metastises to the brain and lung and chest area. His brain mets were gamma knifed and we will get an updated MRI in a couple of weeks.
Good luck with your first Yervoy treatment.
Lise
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