Need Linda’s help

Lisa,

That is a mixed bag.  When I saw my oncologist last week I told him I will never go on the steroids again. His comment was that yes I will… he then explained that my tumor had been vascular and if the steroids hadn't stopped it then would have been fatal.  Of course mine was deep and at the beginning I didn't have options.How long ago did they think it bled or is it still bleeding? If it is then you have to do something right away. Tumors that are that large do take quite a long time to be totally dead. At 3.5 months that was removed was 70% dead from the pathology.

What are they suggesting to you?  Is there also edema around the tumor?  Have they discussed a crainectomy?  If you did that then you have to do steroids but not long.  Even with having been on for so many months they got me off of the steroids within 3 weeks of surgery. They put it on for surgery itself, many are off within a week.  Just wonder why it's growing and at the same time is looking like it's dying.  Maybe they can give another scan in 4 weeks and then compare.

My last scans were mixed also. My lung nodule grew 2 mm. They are rescanning in 6 weeks to compare. For 15 months after it had grown it had just stayed and did nothing. I guess after 5 months of steroids and no immune system this wasn't bad.  The bad part was the brain. I had been told 2 weeks earlier that the final report wasn't in but the radiology oncologist said that he felt the area of the removed tumor was either radiation response or scar tissue, he would call if the final report was different. No call…………….   At the oncologist I told him about the scar tissue. He said no, they aren't sure, it could be a recurrance. WTF!  the Radiologist had never called.  It looks like scar all but one little area that is pointing out (they called it a distal).  Rescan in 6 weeks to decide.  I am freaking. They have already done the radiation and the surgery. Talking about a b-raf trial, I really don't want to be on that yet.  Hoping it's scar tissue. 

If you do steroids now, can they hold off the last ippi shot till you are done?  How close has all of these brain tumors been to each other?

Let us know what you decide to do. Many have had crainectomy's and have had great successes!  Jag is one of them.

Linda

Lisa,

That is a mixed bag.  When I saw my oncologist last week I told him I will never go on the steroids again. His comment was that yes I will… he then explained that my tumor had been vascular and if the steroids hadn't stopped it then would have been fatal.  Of course mine was deep and at the beginning I didn't have options.How long ago did they think it bled or is it still bleeding? If it is then you have to do something right away. Tumors that are that large do take quite a long time to be totally dead. At 3.5 months that was removed was 70% dead from the pathology.

What are they suggesting to you?  Is there also edema around the tumor?  Have they discussed a crainectomy?  If you did that then you have to do steroids but not long.  Even with having been on for so many months they got me off of the steroids within 3 weeks of surgery. They put it on for surgery itself, many are off within a week.  Just wonder why it's growing and at the same time is looking like it's dying.  Maybe they can give another scan in 4 weeks and then compare.

My last scans were mixed also. My lung nodule grew 2 mm. They are rescanning in 6 weeks to compare. For 15 months after it had grown it had just stayed and did nothing. I guess after 5 months of steroids and no immune system this wasn't bad.  The bad part was the brain. I had been told 2 weeks earlier that the final report wasn't in but the radiology oncologist said that he felt the area of the removed tumor was either radiation response or scar tissue, he would call if the final report was different. No call…………….   At the oncologist I told him about the scar tissue. He said no, they aren't sure, it could be a recurrance. WTF!  the Radiologist had never called.  It looks like scar all but one little area that is pointing out (they called it a distal).  Rescan in 6 weeks to decide.  I am freaking. They have already done the radiation and the surgery. Talking about a b-raf trial, I really don't want to be on that yet.  Hoping it's scar tissue. 

If you do steroids now, can they hold off the last ippi shot till you are done?  How close has all of these brain tumors been to each other?

Let us know what you decide to do. Many have had crainectomy's and have had great successes!  Jag is one of them.

Linda

Lisa,

That is a mixed bag.  When I saw my oncologist last week I told him I will never go on the steroids again. His comment was that yes I will… he then explained that my tumor had been vascular and if the steroids hadn't stopped it then would have been fatal.  Of course mine was deep and at the beginning I didn't have options.How long ago did they think it bled or is it still bleeding? If it is then you have to do something right away. Tumors that are that large do take quite a long time to be totally dead. At 3.5 months that was removed was 70% dead from the pathology.

What are they suggesting to you?  Is there also edema around the tumor?  Have they discussed a crainectomy?  If you did that then you have to do steroids but not long.  Even with having been on for so many months they got me off of the steroids within 3 weeks of surgery. They put it on for surgery itself, many are off within a week.  Just wonder why it's growing and at the same time is looking like it's dying.  Maybe they can give another scan in 4 weeks and then compare.

My last scans were mixed also. My lung nodule grew 2 mm. They are rescanning in 6 weeks to compare. For 15 months after it had grown it had just stayed and did nothing. I guess after 5 months of steroids and no immune system this wasn't bad.  The bad part was the brain. I had been told 2 weeks earlier that the final report wasn't in but the radiology oncologist said that he felt the area of the removed tumor was either radiation response or scar tissue, he would call if the final report was different. No call…………….   At the oncologist I told him about the scar tissue. He said no, they aren't sure, it could be a recurrance. WTF!  the Radiologist had never called.  It looks like scar all but one little area that is pointing out (they called it a distal).  Rescan in 6 weeks to decide.  I am freaking. They have already done the radiation and the surgery. Talking about a b-raf trial, I really don't want to be on that yet.  Hoping it's scar tissue. 

If you do steroids now, can they hold off the last ippi shot till you are done?  How close has all of these brain tumors been to each other?

Let us know what you decide to do. Many have had crainectomy's and have had great successes!  Jag is one of them.

Linda

Lisa, I would have a frank discussion with all your doctors and if surgery is an option, go for it and get that tumor removed. Phil’s craniotomy in October was a fairly easy surgery, considering how scared we were at the time. He was very quickly weaned from steroids after the surgery, I personally hate steroids, but in the land of brain mets, they are sometimes a necessary evil. Phil was only on steroids a few weeks total, and has been doing pretty well since this Fall. I personally would avoid more long term steroid use that would be needed to stabilize the symptoms from a bleeding tumor, while waiting to see if it is dying off! Go for the surgery, you are young and can handle it! The best to you and your family, I have followed your journey and know how hard life can be battling melanoma and raising a family. Big hugs, you have plenty of people cheering you on, keep positive! Valerie

Lisa, I would have a frank discussion with all your doctors and if surgery is an option, go for it and get that tumor removed. Phil’s craniotomy in October was a fairly easy surgery, considering how scared we were at the time. He was very quickly weaned from steroids after the surgery, I personally hate steroids, but in the land of brain mets, they are sometimes a necessary evil. Phil was only on steroids a few weeks total, and has been doing pretty well since this Fall. I personally would avoid more long term steroid use that would be needed to stabilize the symptoms from a bleeding tumor, while waiting to see if it is dying off! Go for the surgery, you are young and can handle it! The best to you and your family, I have followed your journey and know how hard life can be battling melanoma and raising a family. Big hugs, you have plenty of people cheering you on, keep positive! Valerie

Lisa, I would have a frank discussion with all your doctors and if surgery is an option, go for it and get that tumor removed. Phil’s craniotomy in October was a fairly easy surgery, considering how scared we were at the time. He was very quickly weaned from steroids after the surgery, I personally hate steroids, but in the land of brain mets, they are sometimes a necessary evil. Phil was only on steroids a few weeks total, and has been doing pretty well since this Fall. I personally would avoid more long term steroid use that would be needed to stabilize the symptoms from a bleeding tumor, while waiting to see if it is dying off! Go for the surgery, you are young and can handle it! The best to you and your family, I have followed your journey and know how hard life can be battling melanoma and raising a family. Big hugs, you have plenty of people cheering you on, keep positive! Valerie