› Forums › General Melanoma Community › Positive Response to Ipi – What’s next?
- This topic has 24 replies, 6 voices, and was last updated 10 years, 7 months ago by
NYKaren.
- Post
-
- September 6, 2013 at 5:16 pm
My husband, Don, began Ipi treatments on May 20th, after Zelboraf worked for only 2-3 months. The scans Don had this week show definite improvement, and Dr. Flaherty at Mass General said there is no doubt that Don is having a positive response to the immunotherapy. He is so happy with Don’s progress, that we don’t have another appointment for at least eight weeks!
My husband, Don, began Ipi treatments on May 20th, after Zelboraf worked for only 2-3 months. The scans Don had this week show definite improvement, and Dr. Flaherty at Mass General said there is no doubt that Don is having a positive response to the immunotherapy. He is so happy with Don’s progress, that we don’t have another appointment for at least eight weeks!
Needless to say, we both shed a few tears in that doctor’s office yesterday – tears of joy and happiness, tears of relief. Dr. Flaherty was beaming, and his nurse practitioner came in to give us both hugs. We both recounted how the first oncologist who gave us Don’s diagnosis in January told us there was nothing that could be done and he had maybe three months…. (that was the last time we saw that guy!).
Dr. Flaherty felt the prognosis at this point is positive, but we must remain vigilant with blood tests and scans and MRI’s and see how things go over the next few months. Truthfully, I'm afraid to "relax," although I do intend to enjoy the next several weeks. I would love to hear about any experiences with Ipi showing success, and what comes next?
In the meantime, Don and I hosted a beautifully romantic wedding for our daughter, Georgi, on August 31st. And yes, Don did get to dance with his daughter! Our attention now transfers to eldest daughter, Tori, who is pregnant with our first grandchild — a GIRL! — due 12/31/2013. Don and I can't wait for this, but we will while away our time in Florida for a bit before returning to central Mass for the holidays and baby's arrival.
Heartfelt appreciation to all of you who share this war on melanoma with us.
Janet Lee
- Replies
-
-
- September 6, 2013 at 5:43 pm
Hi that is great news for me.. My name is Becky and I 'm from Jackson,MS. I am currenyly on anti-pd1 at MD Anderson I go every three weeks. Did your husband get sick after his treatments? I have been getting sick on day two.I will have scans next month. hoping and praying for good results.
-
- September 6, 2013 at 5:43 pm
Hi that is great news for me.. My name is Becky and I 'm from Jackson,MS. I am currenyly on anti-pd1 at MD Anderson I go every three weeks. Did your husband get sick after his treatments? I have been getting sick on day two.I will have scans next month. hoping and praying for good results.
-
- September 6, 2013 at 5:43 pm
Hi that is great news for me.. My name is Becky and I 'm from Jackson,MS. I am currenyly on anti-pd1 at MD Anderson I go every three weeks. Did your husband get sick after his treatments? I have been getting sick on day two.I will have scans next month. hoping and praying for good results.
-
- September 6, 2013 at 5:43 pm
Hi Janet,
Congratulations on your good news! We go in next week, hoping for good news too.
Rebecca
-
- September 6, 2013 at 5:43 pm
Hi Janet,
Congratulations on your good news! We go in next week, hoping for good news too.
Rebecca
-
- September 6, 2013 at 5:43 pm
Hi Janet,
Congratulations on your good news! We go in next week, hoping for good news too.
Rebecca
-
- September 7, 2013 at 2:02 am
Such good news.Happy that Don got to dance at his daughters wedding.Also waiting to hold his first grandchild.Maybe even on Christmas if she arrives early. What a blessing that will be. With Gods help and the right doctors anything is possible.May your next posts only get even better.Beat the Beast. Al
-
- September 7, 2013 at 2:02 am
Such good news.Happy that Don got to dance at his daughters wedding.Also waiting to hold his first grandchild.Maybe even on Christmas if she arrives early. What a blessing that will be. With Gods help and the right doctors anything is possible.May your next posts only get even better.Beat the Beast. Al
-
- September 7, 2013 at 2:02 am
Such good news.Happy that Don got to dance at his daughters wedding.Also waiting to hold his first grandchild.Maybe even on Christmas if she arrives early. What a blessing that will be. With Gods help and the right doctors anything is possible.May your next posts only get even better.Beat the Beast. Al
-
- September 7, 2013 at 3:04 am
Janet,
Your post brought a tear of joy to my eyes. I'm so happy for you not only for your melanoma news but for all the other blessings occurring in your life that your husband is here to experience. Prayers for you and Don that IPI continues to work miracles for him.
Brian
-
- September 7, 2013 at 3:04 am
Janet,
Your post brought a tear of joy to my eyes. I'm so happy for you not only for your melanoma news but for all the other blessings occurring in your life that your husband is here to experience. Prayers for you and Don that IPI continues to work miracles for him.
Brian
-
- September 7, 2013 at 3:04 am
Janet,
Your post brought a tear of joy to my eyes. I'm so happy for you not only for your melanoma news but for all the other blessings occurring in your life that your husband is here to experience. Prayers for you and Don that IPI continues to work miracles for him.
Brian
-
- September 7, 2013 at 4:45 pm
Janet, I am so happy for you and Don!
To think that back in February he was suddenly diagnosed with Stage IV disease with brain mets and some doctors said there was no hope for him. Then you had that whole agonizing hassle with your insurance company to get them to cover Zelboraf for him, which you finally won! You also won compassionate use of Zelboraf from Genentech. The Zelboraf combined with neurosurgery got the tumors under control. He was finally out of pain and able to regain his strength. As a consequence, when the Z stopped working he was healthy enough and had enough time to transition to ipi. Now the ipi (plus another round of SRS) is working really well for him and he was able to dance at his daughter's wedding!
I am recounting all this (gleaned from your profile and prior posts) to let other warriors know that there really can be some really good news even in the face of a dire prognosis. There is value in the philosophy of "Fight! Fight! Fight!", especially during the first few months after a diagnosis of Stage IV. Too many doctors (including a couple of my brother's doctors) see the words "Stage IV" and mentally give up right there.
It's true that not every treatment works for every patient. It's true that even when a treatment works, you can never tell when or if the melanoma will return. But with improved imaging techniques, better and safer radiosurgery for brain mets, and the new targeted and immunotherapy treatments we have now, it really is worth the effort to insist on trying a couple of different treatment options.
I, personally, believe that there can come a point where it makes absolute sense to "Let go and let God." But not until you have tried a least a couple of the newer treatments. Miracles CAN happen! Don is one of them!
As to what comes next if he progresses after ipi? I think most folks here would recommend anti-PD1. It might be FDA approved by the time Don needs it. But just in case, you might want to investigate which clinical trials are going on that he might quaify for. Just to have a Plan B in mind.
-
- September 7, 2013 at 4:45 pm
Janet, I am so happy for you and Don!
To think that back in February he was suddenly diagnosed with Stage IV disease with brain mets and some doctors said there was no hope for him. Then you had that whole agonizing hassle with your insurance company to get them to cover Zelboraf for him, which you finally won! You also won compassionate use of Zelboraf from Genentech. The Zelboraf combined with neurosurgery got the tumors under control. He was finally out of pain and able to regain his strength. As a consequence, when the Z stopped working he was healthy enough and had enough time to transition to ipi. Now the ipi (plus another round of SRS) is working really well for him and he was able to dance at his daughter's wedding!
I am recounting all this (gleaned from your profile and prior posts) to let other warriors know that there really can be some really good news even in the face of a dire prognosis. There is value in the philosophy of "Fight! Fight! Fight!", especially during the first few months after a diagnosis of Stage IV. Too many doctors (including a couple of my brother's doctors) see the words "Stage IV" and mentally give up right there.
It's true that not every treatment works for every patient. It's true that even when a treatment works, you can never tell when or if the melanoma will return. But with improved imaging techniques, better and safer radiosurgery for brain mets, and the new targeted and immunotherapy treatments we have now, it really is worth the effort to insist on trying a couple of different treatment options.
I, personally, believe that there can come a point where it makes absolute sense to "Let go and let God." But not until you have tried a least a couple of the newer treatments. Miracles CAN happen! Don is one of them!
As to what comes next if he progresses after ipi? I think most folks here would recommend anti-PD1. It might be FDA approved by the time Don needs it. But just in case, you might want to investigate which clinical trials are going on that he might quaify for. Just to have a Plan B in mind.
-
- September 7, 2013 at 4:45 pm
Janet, I am so happy for you and Don!
To think that back in February he was suddenly diagnosed with Stage IV disease with brain mets and some doctors said there was no hope for him. Then you had that whole agonizing hassle with your insurance company to get them to cover Zelboraf for him, which you finally won! You also won compassionate use of Zelboraf from Genentech. The Zelboraf combined with neurosurgery got the tumors under control. He was finally out of pain and able to regain his strength. As a consequence, when the Z stopped working he was healthy enough and had enough time to transition to ipi. Now the ipi (plus another round of SRS) is working really well for him and he was able to dance at his daughter's wedding!
I am recounting all this (gleaned from your profile and prior posts) to let other warriors know that there really can be some really good news even in the face of a dire prognosis. There is value in the philosophy of "Fight! Fight! Fight!", especially during the first few months after a diagnosis of Stage IV. Too many doctors (including a couple of my brother's doctors) see the words "Stage IV" and mentally give up right there.
It's true that not every treatment works for every patient. It's true that even when a treatment works, you can never tell when or if the melanoma will return. But with improved imaging techniques, better and safer radiosurgery for brain mets, and the new targeted and immunotherapy treatments we have now, it really is worth the effort to insist on trying a couple of different treatment options.
I, personally, believe that there can come a point where it makes absolute sense to "Let go and let God." But not until you have tried a least a couple of the newer treatments. Miracles CAN happen! Don is one of them!
As to what comes next if he progresses after ipi? I think most folks here would recommend anti-PD1. It might be FDA approved by the time Don needs it. But just in case, you might want to investigate which clinical trials are going on that he might quaify for. Just to have a Plan B in mind.
-
- September 11, 2013 at 12:59 am
Hi Janet,I posted here exactly when the website was undergoing maintenance, so of course lost everything. Like POW, I was remembering and reflecting all that you and Don have been through and what a wonderful advocate you’ve been for him in this beast we all battle.
Continued good things on the daughter/baby front.
Karen
-
- September 11, 2013 at 12:59 am
Hi Janet,I posted here exactly when the website was undergoing maintenance, so of course lost everything. Like POW, I was remembering and reflecting all that you and Don have been through and what a wonderful advocate you’ve been for him in this beast we all battle.
Continued good things on the daughter/baby front.
Karen
-
- September 11, 2013 at 12:59 am
Hi Janet,I posted here exactly when the website was undergoing maintenance, so of course lost everything. Like POW, I was remembering and reflecting all that you and Don have been through and what a wonderful advocate you’ve been for him in this beast we all battle.
Continued good things on the daughter/baby front.
Karen
-
- September 11, 2013 at 1:15 am
Hi Janet,I posted here exactly when the website was undergoing maintenance, so of course lost everything. Like POW, I was remembering and reflecting all that you and Don have been through and what a wonderful advocate you’ve been for him in this beast we all battle.
Continued good things on the daughter/baby front.
Karen
-
- September 11, 2013 at 1:15 am
Hi Janet,I posted here exactly when the website was undergoing maintenance, so of course lost everything. Like POW, I was remembering and reflecting all that you and Don have been through and what a wonderful advocate you’ve been for him in this beast we all battle.
Continued good things on the daughter/baby front.
Karen
-
- September 11, 2013 at 1:15 am
Hi Janet,I posted here exactly when the website was undergoing maintenance, so of course lost everything. Like POW, I was remembering and reflecting all that you and Don have been through and what a wonderful advocate you’ve been for him in this beast we all battle.
Continued good things on the daughter/baby front.
Karen
-
- September 11, 2013 at 1:15 am
Hi Janet,I posted here exactly when the website was undergoing maintenance, so of course lost everything. Like POW, I was remembering and reflecting all that you and Don have been through and what a wonderful advocate you’ve been for him in this beast we all battle.
Continued good things on the daughter/baby front.
Karen
-
- September 11, 2013 at 1:15 am
Hi Janet,I posted here exactly when the website was undergoing maintenance, so of course lost everything. Like POW, I was remembering and reflecting all that you and Don have been through and what a wonderful advocate you’ve been for him in this beast we all battle.
Continued good things on the daughter/baby front.
Karen
-
- September 11, 2013 at 1:15 am
Hi Janet,I posted here exactly when the website was undergoing maintenance, so of course lost everything. Like POW, I was remembering and reflecting all that you and Don have been through and what a wonderful advocate you’ve been for him in this beast we all battle.
Continued good things on the daughter/baby front.
Karen
-
- You must be logged in to reply to this topic.