Ipi in combination with radiation

Radiation was my first treatment but not in combo with ipi. It was pallative (30 Gy in 10 fractions) to my T10 and a few other vertebrae. I do not believe I would still be walking today without it. Unfortunately I did not know about combining it with ipi until a few weeks ago when I was almost done with ipi. Based on my experience with radiation and ipi side affects done seperately I would do them together if I could go back in time. My radiation was to bone so that might be different side affects. My side affects for both done seperately have been minor temporary things. But like my Dr says everyone is different with these treatments. Also my current Dr is a melanoma oncologist and does not believe in radiation. The radiation I had was by a regular cancer oncologist and radiation oncologist. The radiation shrank the tumor by 20% and removed what was in the spinal canal. The last radiation zap was July 5 2013 and was still holding as of last PET on Oct 17 2013. All the other tumors had grown even with the Zelboraf treatment. I get my next PET on Monday Feb 3 2014 to see the affects of ipi.

One of the other members here has an article on her blog about ipi and radiation.

Here is the link.

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/ipi-and-radiationa-good-combo-for.html

Radiation was my first treatment but not in combo with ipi. It was pallative (30 Gy in 10 fractions) to my T10 and a few other vertebrae. I do not believe I would still be walking today without it. Unfortunately I did not know about combining it with ipi until a few weeks ago when I was almost done with ipi. Based on my experience with radiation and ipi side affects done seperately I would do them together if I could go back in time. My radiation was to bone so that might be different side affects. My side affects for both done seperately have been minor temporary things. But like my Dr says everyone is different with these treatments. Also my current Dr is a melanoma oncologist and does not believe in radiation. The radiation I had was by a regular cancer oncologist and radiation oncologist. The radiation shrank the tumor by 20% and removed what was in the spinal canal. The last radiation zap was July 5 2013 and was still holding as of last PET on Oct 17 2013. All the other tumors had grown even with the Zelboraf treatment. I get my next PET on Monday Feb 3 2014 to see the affects of ipi.

One of the other members here has an article on her blog about ipi and radiation.

Here is the link.

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/ipi-and-radiationa-good-combo-for.html

Radiation was my first treatment but not in combo with ipi. It was pallative (30 Gy in 10 fractions) to my T10 and a few other vertebrae. I do not believe I would still be walking today without it. Unfortunately I did not know about combining it with ipi until a few weeks ago when I was almost done with ipi. Based on my experience with radiation and ipi side affects done seperately I would do them together if I could go back in time. My radiation was to bone so that might be different side affects. My side affects for both done seperately have been minor temporary things. But like my Dr says everyone is different with these treatments. Also my current Dr is a melanoma oncologist and does not believe in radiation. The radiation I had was by a regular cancer oncologist and radiation oncologist. The radiation shrank the tumor by 20% and removed what was in the spinal canal. The last radiation zap was July 5 2013 and was still holding as of last PET on Oct 17 2013. All the other tumors had grown even with the Zelboraf treatment. I get my next PET on Monday Feb 3 2014 to see the affects of ipi.

One of the other members here has an article on her blog about ipi and radiation.

Here is the link.

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/ipi-and-radiationa-good-combo-for.html

hi Michele — 

I had radiation to my left groin area following surgery & concurrent with a course of Interferon (I was in stage III at the time).

I don't have any brilliant advice, but do want to reinforce something that you've already noticed. The medical oncology and radiation oncology worlds don't communicate with each other much at all!

The med onc guys (locally and at Sloan Kettering) both seemed to think it was an utter waste of time to get radiation. And the radiation oncologist thought it was totally obvious that I would have it. . 

I don't think there is much evidence in the medical literature that radiation changes the prognosis.  But the prognosis in the past has been so gloomy that I think there is a "might as well try" kind of attitude. 

Radiation isn't benign, though. I now have some pretty serious lymphedema in that leg, which I suspect is more from radiation than from the surgery. Now that the ipi/nivo seems to have worked for now, my leg is bothering me a fair bit. (When I chose it, I believed that I didn't have more than a few months to live, so I wasn't very worried about a chronic condition like lymphedema. So it's a blessing in its way, I guess). 

Good luck, Michele. Let us know what you decide? Sorry that your husband is in stage IV. I hope he responds really well to the Ipi!

-ursula

hi Michele — 

I had radiation to my left groin area following surgery & concurrent with a course of Interferon (I was in stage III at the time).

I don't have any brilliant advice, but do want to reinforce something that you've already noticed. The medical oncology and radiation oncology worlds don't communicate with each other much at all!

The med onc guys (locally and at Sloan Kettering) both seemed to think it was an utter waste of time to get radiation. And the radiation oncologist thought it was totally obvious that I would have it. . 

I don't think there is much evidence in the medical literature that radiation changes the prognosis.  But the prognosis in the past has been so gloomy that I think there is a "might as well try" kind of attitude. 

Radiation isn't benign, though. I now have some pretty serious lymphedema in that leg, which I suspect is more from radiation than from the surgery. Now that the ipi/nivo seems to have worked for now, my leg is bothering me a fair bit. (When I chose it, I believed that I didn't have more than a few months to live, so I wasn't very worried about a chronic condition like lymphedema. So it's a blessing in its way, I guess). 

Good luck, Michele. Let us know what you decide? Sorry that your husband is in stage IV. I hope he responds really well to the Ipi!

-ursula

hi Michele — 

I had radiation to my left groin area following surgery & concurrent with a course of Interferon (I was in stage III at the time).

I don't have any brilliant advice, but do want to reinforce something that you've already noticed. The medical oncology and radiation oncology worlds don't communicate with each other much at all!

The med onc guys (locally and at Sloan Kettering) both seemed to think it was an utter waste of time to get radiation. And the radiation oncologist thought it was totally obvious that I would have it. . 

I don't think there is much evidence in the medical literature that radiation changes the prognosis.  But the prognosis in the past has been so gloomy that I think there is a "might as well try" kind of attitude. 

Radiation isn't benign, though. I now have some pretty serious lymphedema in that leg, which I suspect is more from radiation than from the surgery. Now that the ipi/nivo seems to have worked for now, my leg is bothering me a fair bit. (When I chose it, I believed that I didn't have more than a few months to live, so I wasn't very worried about a chronic condition like lymphedema. So it's a blessing in its way, I guess). 

Good luck, Michele. Let us know what you decide? Sorry that your husband is in stage IV. I hope he responds really well to the Ipi!

-ursula

I have been meaning to reply to you for awhile. We live in the Roseville area. My husband is in the ipi trial for stage 3. He is in the 10 mg ipi  arm- had 2 doses with little side effects. I think our guys were diagnosed at about the same time. Mine got his melanoma from hitting his thumb with a hammer! He let it got too long. He had 2 nodes and then a lymphendectomy. He also had a partial amputation. Radiation was offered initially but he did not want to deal with the lymph edema. I think it could be brutal for your husband in the groin area, maybe disabling. How much ipi is he going to get? Can he get in a combo trial? 

we go to kaiser. So far, we are very pleased with them.  Please keep us posted. I think about you a lot.i post as anonymous because my sign in is my real name. I will try to change it

I have been meaning to reply to you for awhile. We live in the Roseville area. My husband is in the ipi trial for stage 3. He is in the 10 mg ipi  arm- had 2 doses with little side effects. I think our guys were diagnosed at about the same time. Mine got his melanoma from hitting his thumb with a hammer! He let it got too long. He had 2 nodes and then a lymphendectomy. He also had a partial amputation. Radiation was offered initially but he did not want to deal with the lymph edema. I think it could be brutal for your husband in the groin area, maybe disabling. How much ipi is he going to get? Can he get in a combo trial? 

we go to kaiser. So far, we are very pleased with them.  Please keep us posted. I think about you a lot.i post as anonymous because my sign in is my real name. I will try to change it

I have been meaning to reply to you for awhile. We live in the Roseville area. My husband is in the ipi trial for stage 3. He is in the 10 mg ipi  arm- had 2 doses with little side effects. I think our guys were diagnosed at about the same time. Mine got his melanoma from hitting his thumb with a hammer! He let it got too long. He had 2 nodes and then a lymphendectomy. He also had a partial amputation. Radiation was offered initially but he did not want to deal with the lymph edema. I think it could be brutal for your husband in the groin area, maybe disabling. How much ipi is he going to get? Can he get in a combo trial? 

we go to kaiser. So far, we are very pleased with them.  Please keep us posted. I think about you a lot.i post as anonymous because my sign in is my real name. I will try to change it

My Excellent melanoma Surgeon/Researher was not wild about radiation after he spent 7 hours removing and having my iliac and inquinal nodes tested during the operation.  There was one area of matted ruptured nodes that he wasn't 100% sure of from the 25 January 2007 operation.  He recommended that I talk to a couple of Oncology Radiologists and decide what I wanted to do. 
I talked to two and also talked to several people that had received radiation to their abdomen.  Since mine was anal melanoma, the radiologist wanted to start near my left front/side near waist level, radiate down thru my crotch and up the rear to cover thru the anal area.  I heards so many horror stories of the ongoing pain and operations from the people that had received extensive abdominal radiation, that I was extremely concerned.  The radioloogist said no problem, they would get everything perfect in a couple months of radiation. 

i refused.  Within a month my lungs had innumerable lung mets.  IE, they were there before the groin operation, but too small to see on scans.  I went to IL-2 immediately.  IL-2 held my inumerable tumors  for 20 months and killed the ones that had started in my liver.  After the twenty months, innumerable new lung mets developed and the old lung mets rapidly quadrupled in size.  A new groin soft tissue tumor rapidly grew in the area near where the concern had been about the possibility of a few escaped cells.  This tumor was surgically removed the day I showed it to my surgeon!  That area has had no problem in the five years since then.  My lungs have not been NED since at least Feb 2007. but I am fully functional. 
I am glad I handled things the way I did and have such a great team of Melanoma Specialists at UVA.  You will have to decide whaat you belive is the correct path for your Journey.  Looking backards later is of no benefit.

Good luck!

My Excellent melanoma Surgeon/Researher was not wild about radiation after he spent 7 hours removing and having my iliac and inquinal nodes tested during the operation.  There was one area of matted ruptured nodes that he wasn't 100% sure of from the 25 January 2007 operation.  He recommended that I talk to a couple of Oncology Radiologists and decide what I wanted to do. 
I talked to two and also talked to several people that had received radiation to their abdomen.  Since mine was anal melanoma, the radiologist wanted to start near my left front/side near waist level, radiate down thru my crotch and up the rear to cover thru the anal area.  I heards so many horror stories of the ongoing pain and operations from the people that had received extensive abdominal radiation, that I was extremely concerned.  The radioloogist said no problem, they would get everything perfect in a couple months of radiation. 

i refused.  Within a month my lungs had innumerable lung mets.  IE, they were there before the groin operation, but too small to see on scans.  I went to IL-2 immediately.  IL-2 held my inumerable tumors  for 20 months and killed the ones that had started in my liver.  After the twenty months, innumerable new lung mets developed and the old lung mets rapidly quadrupled in size.  A new groin soft tissue tumor rapidly grew in the area near where the concern had been about the possibility of a few escaped cells.  This tumor was surgically removed the day I showed it to my surgeon!  That area has had no problem in the five years since then.  My lungs have not been NED since at least Feb 2007. but I am fully functional. 
I am glad I handled things the way I did and have such a great team of Melanoma Specialists at UVA.  You will have to decide whaat you belive is the correct path for your Journey.  Looking backards later is of no benefit.

Good luck!

My Excellent melanoma Surgeon/Researher was not wild about radiation after he spent 7 hours removing and having my iliac and inquinal nodes tested during the operation.  There was one area of matted ruptured nodes that he wasn't 100% sure of from the 25 January 2007 operation.  He recommended that I talk to a couple of Oncology Radiologists and decide what I wanted to do. 
I talked to two and also talked to several people that had received radiation to their abdomen.  Since mine was anal melanoma, the radiologist wanted to start near my left front/side near waist level, radiate down thru my crotch and up the rear to cover thru the anal area.  I heards so many horror stories of the ongoing pain and operations from the people that had received extensive abdominal radiation, that I was extremely concerned.  The radioloogist said no problem, they would get everything perfect in a couple months of radiation. 

i refused.  Within a month my lungs had innumerable lung mets.  IE, they were there before the groin operation, but too small to see on scans.  I went to IL-2 immediately.  IL-2 held my inumerable tumors  for 20 months and killed the ones that had started in my liver.  After the twenty months, innumerable new lung mets developed and the old lung mets rapidly quadrupled in size.  A new groin soft tissue tumor rapidly grew in the area near where the concern had been about the possibility of a few escaped cells.  This tumor was surgically removed the day I showed it to my surgeon!  That area has had no problem in the five years since then.  My lungs have not been NED since at least Feb 2007. but I am fully functional. 
I am glad I handled things the way I did and have such a great team of Melanoma Specialists at UVA.  You will have to decide whaat you belive is the correct path for your Journey.  Looking backards later is of no benefit.

Good luck!

My husband has stage 4 and just finished last ipi infusion December 17th, 2013.  He had radiation to brain x 2, right orbital mass, back mass, and upper neck/occipital all during ipi infusions.  He did do the stereotactic radiation, not sure if that would make a difference, but he tolerated everything just fine.  Maybe a little fatigued but we never really knew if that was from yervoy, cancer, radiation or all 3.  

We would do it all again in a heartbeat. 

Holly

My husband has stage 4 and just finished last ipi infusion December 17th, 2013.  He had radiation to brain x 2, right orbital mass, back mass, and upper neck/occipital all during ipi infusions.  He did do the stereotactic radiation, not sure if that would make a difference, but he tolerated everything just fine.  Maybe a little fatigued but we never really knew if that was from yervoy, cancer, radiation or all 3.  

We would do it all again in a heartbeat. 

Holly

My husband has stage 4 and just finished last ipi infusion December 17th, 2013.  He had radiation to brain x 2, right orbital mass, back mass, and upper neck/occipital all during ipi infusions.  He did do the stereotactic radiation, not sure if that would make a difference, but he tolerated everything just fine.  Maybe a little fatigued but we never really knew if that was from yervoy, cancer, radiation or all 3.  

We would do it all again in a heartbeat. 

Holly

Hi Michele:

My husband, Don, was diagnosed last January Stage IV, no known primary, with mets in many, many locations. He's really been through the ringer this past year. His first treatment was radiation to the sacral area, because he had fairly large, inoperable masses which were causing him tremendous pain. It worked and those masses have been stagnant for a year now. He's had SRS for brain mets on three different occasions, brain surgery to remove a tumor, surgery to remove a tumor in his inguinal/groin area. In between, he does manage to get a few weeks of feeling better.

He responded minimally to Zelboraf (2-3 months) and had 4 infusions of Ipi from May to July 2013. His oncologist at Mass General says he is responding to the Ipi. His brain has been stable since August (!), and several key mets have gotten smaller and/or held steady. No new mets seen. Except…

A mass grew rapidly in his left inguinal canal, which led to surgery last October. On his December 30 scans, there was a "lymph node" which had doubled in size, again in his left groin area. It is inoperable, and the oncologist has recommended radiation.

There is an important notation here – according to our oncologist, they have seen very positive results from radiation when the patient has had Ipi, and even better when the patient is an Ipi-responder. Let's hope that's true!

Don has now had 8 out of 16 treatments. Of course, of particular concern to us is that he's already had radiation in this area, so the radiation oncologist has to be very careful in planning the treatment to be careful of stomach, bowels, kidneys.

As for the Ipi itself, Don had very few side effects. He did have some skin rashes, which were relieved by topical prescriptions.

I hope our experience is helpful. Best of luck to you and your husband. I can't emphasize enough, just like everyone else on this Board, the importance of centralizing your care with a melanoma specialist. Not just someone who has treated melanoma, but a real specialist.

And, you will also learn a lot from this group on the MPIP bulletin board. They are all awesome!

Janet Lee

Hi Michele:

My husband, Don, was diagnosed last January Stage IV, no known primary, with mets in many, many locations. He's really been through the ringer this past year. His first treatment was radiation to the sacral area, because he had fairly large, inoperable masses which were causing him tremendous pain. It worked and those masses have been stagnant for a year now. He's had SRS for brain mets on three different occasions, brain surgery to remove a tumor, surgery to remove a tumor in his inguinal/groin area. In between, he does manage to get a few weeks of feeling better.

He responded minimally to Zelboraf (2-3 months) and had 4 infusions of Ipi from May to July 2013. His oncologist at Mass General says he is responding to the Ipi. His brain has been stable since August (!), and several key mets have gotten smaller and/or held steady. No new mets seen. Except…

A mass grew rapidly in his left inguinal canal, which led to surgery last October. On his December 30 scans, there was a "lymph node" which had doubled in size, again in his left groin area. It is inoperable, and the oncologist has recommended radiation.

There is an important notation here – according to our oncologist, they have seen very positive results from radiation when the patient has had Ipi, and even better when the patient is an Ipi-responder. Let's hope that's true!

Don has now had 8 out of 16 treatments. Of course, of particular concern to us is that he's already had radiation in this area, so the radiation oncologist has to be very careful in planning the treatment to be careful of stomach, bowels, kidneys.

As for the Ipi itself, Don had very few side effects. He did have some skin rashes, which were relieved by topical prescriptions.

I hope our experience is helpful. Best of luck to you and your husband. I can't emphasize enough, just like everyone else on this Board, the importance of centralizing your care with a melanoma specialist. Not just someone who has treated melanoma, but a real specialist.

And, you will also learn a lot from this group on the MPIP bulletin board. They are all awesome!

Janet Lee

Hi Michele:

My husband, Don, was diagnosed last January Stage IV, no known primary, with mets in many, many locations. He's really been through the ringer this past year. His first treatment was radiation to the sacral area, because he had fairly large, inoperable masses which were causing him tremendous pain. It worked and those masses have been stagnant for a year now. He's had SRS for brain mets on three different occasions, brain surgery to remove a tumor, surgery to remove a tumor in his inguinal/groin area. In between, he does manage to get a few weeks of feeling better.

He responded minimally to Zelboraf (2-3 months) and had 4 infusions of Ipi from May to July 2013. His oncologist at Mass General says he is responding to the Ipi. His brain has been stable since August (!), and several key mets have gotten smaller and/or held steady. No new mets seen. Except…

A mass grew rapidly in his left inguinal canal, which led to surgery last October. On his December 30 scans, there was a "lymph node" which had doubled in size, again in his left groin area. It is inoperable, and the oncologist has recommended radiation.

There is an important notation here – according to our oncologist, they have seen very positive results from radiation when the patient has had Ipi, and even better when the patient is an Ipi-responder. Let's hope that's true!

Don has now had 8 out of 16 treatments. Of course, of particular concern to us is that he's already had radiation in this area, so the radiation oncologist has to be very careful in planning the treatment to be careful of stomach, bowels, kidneys.

As for the Ipi itself, Don had very few side effects. He did have some skin rashes, which were relieved by topical prescriptions.

I hope our experience is helpful. Best of luck to you and your husband. I can't emphasize enough, just like everyone else on this Board, the importance of centralizing your care with a melanoma specialist. Not just someone who has treated melanoma, but a real specialist.

And, you will also learn a lot from this group on the MPIP bulletin board. They are all awesome!

Janet Lee