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Need Linda’s help

Forums General Melanoma Community Need Linda’s help

  • Post
    Lisa13
    Participant

      Hi Linda,

      I hope you're doing well!

      After 4 months after my 2.5 cm tumour was gamma knifed, this is what they said. 

      "The largest lump on the left side is a few millimeters larger, again, looks mostly like dying tumour, possibly a bit more bleeding"

      Hi Linda,

      I hope you're doing well!

      After 4 months after my 2.5 cm tumour was gamma knifed, this is what they said. 

      "The largest lump on the left side is a few millimeters larger, again, looks mostly like dying tumour, possibly a bit more bleeding"

      They found a small tumour yesterday which quite frankly is better thann the other 2 mets I kept getting after 2 months.  Anyway, I've never been on steroids yet because I didn't want to affect my ipi which my last treatment is on Friday.  What I wanted to know is what are the options of these options?

      Lisa

    Viewing 5 reply threads
    • Replies
        lhaley
        Participant

          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

            killmel
            Participant

              Hi Lisa,

              I am so sorry for your bad news. You must be devasitated and scared. It is just not good that you keep on getting tumors in your brain.

              I have been very fortunate and not had any brain mets so I cannot give you any options. After 3 months on Merck PD1 trial, I am NED. I do not have any suggestions for you but I am praying for you and your family.

              You are so young and I wish you the best.

              Maryann

              killmel
              Participant

                Hi Lisa,

                I am so sorry for your bad news. You must be devasitated and scared. It is just not good that you keep on getting tumors in your brain.

                I have been very fortunate and not had any brain mets so I cannot give you any options. After 3 months on Merck PD1 trial, I am NED. I do not have any suggestions for you but I am praying for you and your family.

                You are so young and I wish you the best.

                Maryann

                killmel
                Participant

                  Hi Lisa,

                  I am so sorry for your bad news. You must be devasitated and scared. It is just not good that you keep on getting tumors in your brain.

                  I have been very fortunate and not had any brain mets so I cannot give you any options. After 3 months on Merck PD1 trial, I am NED. I do not have any suggestions for you but I am praying for you and your family.

                  You are so young and I wish you the best.

                  Maryann

                lhaley
                Participant

                  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

                  lhaley
                  Participant

                    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

                    Phil S
                    Participant
                      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
                        Lisa13
                        Participant

                          Hi Everyone,

                          I've had 3 brain mets, plus the one I just got and the one that I've had some problems with it.

                          First of all, I've been on ipi reinduction since Feruary.  My Dr. told me to hang on before steriods because he didn't want to ruin the chance of ipi. My final ipi shot is on Friday, but they may wait since I have to get the small tumour removed. I always got 2 tumours at a time and now just 1, so I'm truly hoping ipi has done some work.

                          Did you know I've spoken to a few people got a few brain mets while they were on ipi and now don't have any of them. I Also know about 5 people so far that they've had more than 2 and they're still here!  I don't give up. If I could get another met and nothing came back for a long time, it's definately possibly.

                          Once I speak to my oncologist and radiologist, we'll know what's going.  If I can get the one removed, then we can figure out wha we're going to do with the ones that's been hanging out for 5 months.  It's been in a great safe spot, so that's good news.  We just have to figure out what to do with the edema.

                          Lisa 

                          Lisa13
                          Participant

                            Hi Everyone,

                            I've had 3 brain mets, plus the one I just got and the one that I've had some problems with it.

                            First of all, I've been on ipi reinduction since Feruary.  My Dr. told me to hang on before steriods because he didn't want to ruin the chance of ipi. My final ipi shot is on Friday, but they may wait since I have to get the small tumour removed. I always got 2 tumours at a time and now just 1, so I'm truly hoping ipi has done some work.

                            Did you know I've spoken to a few people got a few brain mets while they were on ipi and now don't have any of them. I Also know about 5 people so far that they've had more than 2 and they're still here!  I don't give up. If I could get another met and nothing came back for a long time, it's definately possibly.

                            Once I speak to my oncologist and radiologist, we'll know what's going.  If I can get the one removed, then we can figure out wha we're going to do with the ones that's been hanging out for 5 months.  It's been in a great safe spot, so that's good news.  We just have to figure out what to do with the edema.

                            Lisa 

                            Lisa13
                            Participant

                              Hi Everyone,

                              I've had 3 brain mets, plus the one I just got and the one that I've had some problems with it.

                              First of all, I've been on ipi reinduction since Feruary.  My Dr. told me to hang on before steriods because he didn't want to ruin the chance of ipi. My final ipi shot is on Friday, but they may wait since I have to get the small tumour removed. I always got 2 tumours at a time and now just 1, so I'm truly hoping ipi has done some work.

                              Did you know I've spoken to a few people got a few brain mets while they were on ipi and now don't have any of them. I Also know about 5 people so far that they've had more than 2 and they're still here!  I don't give up. If I could get another met and nothing came back for a long time, it's definately possibly.

                              Once I speak to my oncologist and radiologist, we'll know what's going.  If I can get the one removed, then we can figure out wha we're going to do with the ones that's been hanging out for 5 months.  It's been in a great safe spot, so that's good news.  We just have to figure out what to do with the edema.

                              Lisa 

                              Lisa13
                              Participant

                                Hi Everyone,

                                I've had 3 brain mets, plus the one I just got and the one that I've had some problems with it.

                                First of all, I've been on ipi reinduction since Feruary.  My Dr. told me to hang on before steriods because he didn't want to ruin the chance of ipi. My final ipi shot is on Friday, but they may wait since I have to get the small tumour removed. I always got 2 tumours at a time and now just 1, so I'm truly hoping ipi has done some work.

                                Did you know I've spoken to a few people got a few brain mets while they were on ipi and now don't have any of them. I Also know about 5 people so far that they've had more than 2 and they're still here!  I don't give up. If I could get another met and nothing came back for a long time, it's definately possibly.

                                Once I speak to my oncologist and radiologist, we'll know what's going.  If I can get the one removed, then we can figure out wha we're going to do with the ones that's been hanging out for 5 months.  It's been in a great safe spot, so that's good news.  We just have to figure out what to do with the edema.

                                Lisa 

                                Lisa13
                                Participant

                                  Hi Everyone,

                                  I've had 3 brain mets, plus the one I just got and the one that I've had some problems with it.

                                  First of all, I've been on ipi reinduction since Feruary.  My Dr. told me to hang on before steriods because he didn't want to ruin the chance of ipi. My final ipi shot is on Friday, but they may wait since I have to get the small tumour removed. I always got 2 tumours at a time and now just 1, so I'm truly hoping ipi has done some work.

                                  Did you know I've spoken to a few people got a few brain mets while they were on ipi and now don't have any of them. I Also know about 5 people so far that they've had more than 2 and they're still here!  I don't give up. If I could get another met and nothing came back for a long time, it's definately possibly.

                                  Once I speak to my oncologist and radiologist, we'll know what's going.  If I can get the one removed, then we can figure out wha we're going to do with the ones that's been hanging out for 5 months.  It's been in a great safe spot, so that's good news.  We just have to figure out what to do with the edema.

                                  Lisa 

                                  Lisa13
                                  Participant

                                    Hi Everyone,

                                    I've had 3 brain mets, plus the one I just got and the one that I've had some problems with it.

                                    First of all, I've been on ipi reinduction since Feruary.  My Dr. told me to hang on before steriods because he didn't want to ruin the chance of ipi. My final ipi shot is on Friday, but they may wait since I have to get the small tumour removed. I always got 2 tumours at a time and now just 1, so I'm truly hoping ipi has done some work.

                                    Did you know I've spoken to a few people got a few brain mets while they were on ipi and now don't have any of them. I Also know about 5 people so far that they've had more than 2 and they're still here!  I don't give up. If I could get another met and nothing came back for a long time, it's definately possibly.

                                    Once I speak to my oncologist and radiologist, we'll know what's going.  If I can get the one removed, then we can figure out wha we're going to do with the ones that's been hanging out for 5 months.  It's been in a great safe spot, so that's good news.  We just have to figure out what to do with the edema.

                                    Lisa 

                                  Phil S
                                  Participant
                                    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
                                    Phil S
                                    Participant
                                      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
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