Need advice if this radiation plan sounds right please

Forums General Melanoma Community Need advice if this radiation plan sounds right please

  • Post
    arthurjedi007
    Participant

      The PD1 is doing fantastic but there are a few problematic tumors thus they want to do radiation.

      A tumor in my skull is right at my brain. Tomorrow's MRI will show details. But today my radiation doc was thinking of doing external beams to that section of the skull where the tumor is of 39 gray in 13 fractions. After the MRI he will know if he can instead angle the beams to just that tumor or if we are dealing with further problems. The pet scan did seem to indicate several tiny tumors in various spots of my skull as well as this 2cm one.

      There are also the t12 and l2 in my spine. He's thinking of doing those like last time for the t10 of 30 gray each in 5 fractions. Although they are a problem I'm not having anywhere near the symptoms like I did when the t10 almost paralyzed me last winter. Although the pet/ct scan seems to indicate from the light on the skelatal view the t12 is about 2 thirds the size the t10 used to be. It's a short horizontal bar instead of a dot.

      So my first concern is over 90 gray seems like a whole lot of radiation but I dunno maybe that is common. It's certainly more than 3 times what I've had in the past.

      My second concern is the plan to radiate the tumor in my skull. I was thinking something more like gamma knife but maybe that is only for inside the brain not the skull at the brain I dunno. I was also thinking intensity-modulated radiotherapy (IMRT) but again maybe that is only for inside the brain. I know mayo where I get my pd1 is still working on their proton therapy which again may not be for this. I know when my doc kept me from being paralyzed he did stereostatic radiation (SRS) with a CT scanner to more directly pinpoint the beams.

      So I dunno. I'm kind of over my head again. Any advice would be appreciated.

      Artie

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    • Replies
        RJoeyB
        Participant

          Hi Artie,

          Sorry to hear you have some more upcoming radiation, but along with your previous post, I think all told, you're moving in the right direction and it sounds like things are well in hand.  Certainly things around your skull will depend on what the MRI shows, but I am a little surprised to hear the dosing schedule that's been suggested.  Much of what I heard, read, and learned with my own radiation for melanoma experiences (4 rounds of SBRT to various leg bone mets, one round of SBRT to a lung met, and one round of SRS with CyberKnife to the tumor bed of a brain met following craniotomy) has been to "hit it hard and fast", in other words, something in the 30-50 Gy range given in 3-5 fractions on a Mon-Wed-Fri or Tue-Fri schedule.  I'm not sure why that would be different for a met in the skull but outside the brain, definitely something I'd discuss with your radiation oncologist.  Much of the work with melanoma says that melanoma mets respond much better to this approach .  My experience is a small sample size, but even my first two rounds on the leg bone mets were 30-Gy in 5 x 6-Gy fractions, which kept them stable for 2+ years, but they eventually started to grow and required surgery after 2+ years.  But the next two were 30-Gy in 3 x 10-Gy fractions, and they're not only stable but don't even pick up on PET, also about 2+ years later.  Again, I think much will depend on your MRI and if you are dealing with one or several spots.  If it's several, Gamma Knife would seem to be an option unless it is truly reserved for spots inside the brain, but for a single tumor, another form of SBRT like CyberKnife could work as well, I'd think.

          For clarification, and again, this is my understanding, the difference between Sand SBRT is just one of semantics, SRS is used to describe stereotactic radiation therapy when it is used on the brain, and SBRT describes the same thing when used anywhere else on the body.  As you describe it, The tumor you're talking about is intracranial but outside the brain, so I don't know which term would officially be used.

          You also expressed concern about 90 Gy of total radiation.  I'm not sure where you're coming up with that number, so I'm going to make an assumption, but please correct me if I'm assuming incorrectly.  It sounds like you're adding up the total amount of radiation you'll receive in these three treatments to three different areas (skull, T12, and L2), is that right?  If that's the case, the concern with radiation is the total amount received to a single area, so in this case, adding them together doesn't tell you anything and shouldn't raise a concern — but it's definitely a good question.

          It may be worth asking about proton therapy, but I've found that while most think it is a great technology, there are existing (and less expensive) ways of providing the same outcomes with existing methods for many tumors.  But it is appropriate for certain tumor locations.  What proton therapy offers is a way to manage the depth to which the beam maintains its power at which point it drops way off.  While a traditional radiation therapy machine, even SBRT, maintains the intensity of the beam (or multiple beams) pretty much as it enters and exits the body, through any tissues it encounters, proton therapy machines rely on a phenomenon of protons called the "Bragg Peak" that allows the intensity of the beam to intensify and then drop off significantly at a certain distance (preferably the depth of the target tumor), minimizing damage to surrounding tissues, especially those on the "beam exit" side.  That comes at a cost of what is now a very large, expensive machine and planning process.

          I hope that helps, let us know how your MRI goes — and so glad to read the encouraging results you're seeing with PD-1.

          Best, Joe

            RJoeyB
            Participant

              Correction to my second paragraph…

              "…between Sand SBRT…" should read "between SRS and SBRT…"

              Sorry about that.

              Joe

              JerryfromFauq
              Participant

                RJoeyB, where's the LIKE button?

                JerryfromFauq
                Participant

                  RJoeyB, where's the LIKE button?

                  JerryfromFauq
                  Participant

                    RJoeyB, where's the LIKE button?

                    RJoeyB
                    Participant

                      Correction to my second paragraph…

                      "…between Sand SBRT…" should read "between SRS and SBRT…"

                      Sorry about that.

                      Joe

                      RJoeyB
                      Participant

                        Correction to my second paragraph…

                        "…between Sand SBRT…" should read "between SRS and SBRT…"

                        Sorry about that.

                        Joe

                        arthurjedi007
                        Participant

                          Thank you so much Joe. That is really helpful. Yes I was adding up the total gray so I won't worry about that part now.

                          arthurjedi007
                          Participant

                            Thank you so much Joe. That is really helpful. Yes I was adding up the total gray so I won't worry about that part now.

                            arthurjedi007
                            Participant

                              Thank you so much Joe. That is really helpful. Yes I was adding up the total gray so I won't worry about that part now.

                            RJoeyB
                            Participant

                              Hi Artie,

                              Sorry to hear you have some more upcoming radiation, but along with your previous post, I think all told, you're moving in the right direction and it sounds like things are well in hand.  Certainly things around your skull will depend on what the MRI shows, but I am a little surprised to hear the dosing schedule that's been suggested.  Much of what I heard, read, and learned with my own radiation for melanoma experiences (4 rounds of SBRT to various leg bone mets, one round of SBRT to a lung met, and one round of SRS with CyberKnife to the tumor bed of a brain met following craniotomy) has been to "hit it hard and fast", in other words, something in the 30-50 Gy range given in 3-5 fractions on a Mon-Wed-Fri or Tue-Fri schedule.  I'm not sure why that would be different for a met in the skull but outside the brain, definitely something I'd discuss with your radiation oncologist.  Much of the work with melanoma says that melanoma mets respond much better to this approach .  My experience is a small sample size, but even my first two rounds on the leg bone mets were 30-Gy in 5 x 6-Gy fractions, which kept them stable for 2+ years, but they eventually started to grow and required surgery after 2+ years.  But the next two were 30-Gy in 3 x 10-Gy fractions, and they're not only stable but don't even pick up on PET, also about 2+ years later.  Again, I think much will depend on your MRI and if you are dealing with one or several spots.  If it's several, Gamma Knife would seem to be an option unless it is truly reserved for spots inside the brain, but for a single tumor, another form of SBRT like CyberKnife could work as well, I'd think.

                              For clarification, and again, this is my understanding, the difference between Sand SBRT is just one of semantics, SRS is used to describe stereotactic radiation therapy when it is used on the brain, and SBRT describes the same thing when used anywhere else on the body.  As you describe it, The tumor you're talking about is intracranial but outside the brain, so I don't know which term would officially be used.

                              You also expressed concern about 90 Gy of total radiation.  I'm not sure where you're coming up with that number, so I'm going to make an assumption, but please correct me if I'm assuming incorrectly.  It sounds like you're adding up the total amount of radiation you'll receive in these three treatments to three different areas (skull, T12, and L2), is that right?  If that's the case, the concern with radiation is the total amount received to a single area, so in this case, adding them together doesn't tell you anything and shouldn't raise a concern — but it's definitely a good question.

                              It may be worth asking about proton therapy, but I've found that while most think it is a great technology, there are existing (and less expensive) ways of providing the same outcomes with existing methods for many tumors.  But it is appropriate for certain tumor locations.  What proton therapy offers is a way to manage the depth to which the beam maintains its power at which point it drops way off.  While a traditional radiation therapy machine, even SBRT, maintains the intensity of the beam (or multiple beams) pretty much as it enters and exits the body, through any tissues it encounters, proton therapy machines rely on a phenomenon of protons called the "Bragg Peak" that allows the intensity of the beam to intensify and then drop off significantly at a certain distance (preferably the depth of the target tumor), minimizing damage to surrounding tissues, especially those on the "beam exit" side.  That comes at a cost of what is now a very large, expensive machine and planning process.

                              I hope that helps, let us know how your MRI goes — and so glad to read the encouraging results you're seeing with PD-1.

                              Best, Joe

                              RJoeyB
                              Participant

                                Hi Artie,

                                Sorry to hear you have some more upcoming radiation, but along with your previous post, I think all told, you're moving in the right direction and it sounds like things are well in hand.  Certainly things around your skull will depend on what the MRI shows, but I am a little surprised to hear the dosing schedule that's been suggested.  Much of what I heard, read, and learned with my own radiation for melanoma experiences (4 rounds of SBRT to various leg bone mets, one round of SBRT to a lung met, and one round of SRS with CyberKnife to the tumor bed of a brain met following craniotomy) has been to "hit it hard and fast", in other words, something in the 30-50 Gy range given in 3-5 fractions on a Mon-Wed-Fri or Tue-Fri schedule.  I'm not sure why that would be different for a met in the skull but outside the brain, definitely something I'd discuss with your radiation oncologist.  Much of the work with melanoma says that melanoma mets respond much better to this approach .  My experience is a small sample size, but even my first two rounds on the leg bone mets were 30-Gy in 5 x 6-Gy fractions, which kept them stable for 2+ years, but they eventually started to grow and required surgery after 2+ years.  But the next two were 30-Gy in 3 x 10-Gy fractions, and they're not only stable but don't even pick up on PET, also about 2+ years later.  Again, I think much will depend on your MRI and if you are dealing with one or several spots.  If it's several, Gamma Knife would seem to be an option unless it is truly reserved for spots inside the brain, but for a single tumor, another form of SBRT like CyberKnife could work as well, I'd think.

                                For clarification, and again, this is my understanding, the difference between Sand SBRT is just one of semantics, SRS is used to describe stereotactic radiation therapy when it is used on the brain, and SBRT describes the same thing when used anywhere else on the body.  As you describe it, The tumor you're talking about is intracranial but outside the brain, so I don't know which term would officially be used.

                                You also expressed concern about 90 Gy of total radiation.  I'm not sure where you're coming up with that number, so I'm going to make an assumption, but please correct me if I'm assuming incorrectly.  It sounds like you're adding up the total amount of radiation you'll receive in these three treatments to three different areas (skull, T12, and L2), is that right?  If that's the case, the concern with radiation is the total amount received to a single area, so in this case, adding them together doesn't tell you anything and shouldn't raise a concern — but it's definitely a good question.

                                It may be worth asking about proton therapy, but I've found that while most think it is a great technology, there are existing (and less expensive) ways of providing the same outcomes with existing methods for many tumors.  But it is appropriate for certain tumor locations.  What proton therapy offers is a way to manage the depth to which the beam maintains its power at which point it drops way off.  While a traditional radiation therapy machine, even SBRT, maintains the intensity of the beam (or multiple beams) pretty much as it enters and exits the body, through any tissues it encounters, proton therapy machines rely on a phenomenon of protons called the "Bragg Peak" that allows the intensity of the beam to intensify and then drop off significantly at a certain distance (preferably the depth of the target tumor), minimizing damage to surrounding tissues, especially those on the "beam exit" side.  That comes at a cost of what is now a very large, expensive machine and planning process.

                                I hope that helps, let us know how your MRI goes — and so glad to read the encouraging results you're seeing with PD-1.

                                Best, Joe

                                arthurjedi007
                                Participant

                                  I got my MRI report today. I hadn't heard from the Dr so I got it myself. I think I'm really lucky. The worse tumor which is what they plan to radiate "involves the calvarium and extends into the cranial vault involving the dura and displacing the brain and extends into the scalp… blah blah about the size… I do not see definite edema within the brain." It is also bigger than it was in my last mri on Feb 3rd. About 3.65 cm x 2.8 cm now vs 2.8cm by 1.1 cm then. The other 2 similar tumors are smaller "less expansile" than Feb 3rd so I assume that must be either the taf/mek I was on except no report said it or probably the pd1 I'm on now.

                                  "No new lesions are seen. No enhancing brain metastases are seen."

                                  So if I understand right the main tumor is basically pressing on my brain but there is no detectable mel in the brain. So that sounds good to me.

                                  There are lots of fractures in my spine but the Dr is planning on radiating those 2 spots too.

                                  I see the Dr tomorrow so I will ask him about the minimum 6 gray per zap for mel tumors. I think we will probably start the radiation on 9/5.

                                  Again thank you very much Joe. I'm sorry I'm not super responsive. This pressure in my skull is kind of difficult to deal with. But others are way worse than me so I consider myself lucky and very blessed.

                                  Artie

                                   

                                    RJoeyB
                                    Participant

                                      No need to apologize Artie — you're still going through a lot.  It's been good to read about your overall move forward with PD-1, sorry to hear that you're suffering some physical effects of these specific tumors.

                                      I think you're right to be glad that there is nothing actually in the brain right now, what a difference a centimeter or two makes!  From how you describe it in your most recent post, I think I'm a little more clear.  Originally, I thought it was perhaps a met between the cranium and the brain, but as you describe it just now, it sounds like it's truly a bone met, protruding from the bone down into the cranial cavity and pressing on the dura (the protective outer layer of the brain) and also a little upward into the scalp?  Can you feel a bump on your scalp where this met is located?

                                      The size of it will require a larger radiation field and that may be influencing your radiation oncologist's decision on the kind of radiation delivery to use.  I've heard 2.5- to 3.0-cm around as the upper limit for SRS/SBRT, and with the proximity to the brain, as much as possible they want to minimize damage to brain tissue.  They'll need to target the entire mass; unfortunately that can't use a narrow beam and target just the center, but instead deliver the maximum dose to the entire tumor using a wider field.  I would think that would still be possible, with sufficient planning, using SBRT at the higher doses that are more effective for melanoma.  As I've written in other posts, when most people think of SRS or SBRT, they think of Gamma Knife of CyberKnife, which I believe use narrower beams.  However, CyberKnife, for example, is just a small linear accelerator ("linac") on a robotic arm, which allows it to full 3-D motion in space.  SBRT can be done with a traditional linac (the one that looks like a giant KitchenAid mixer), too, again, with the proper planning tools, which would allow for wider, non-uniform field sizes and shapes.  When I had a smaller met in my lung radiated last winter, it was SBRT on a traditional linac — 30-Gy given in 5 fractions of 6-Gy each on a M-W-F schedule.  Each 6-Gy fraction was further divided into 7 or 8 "subfractions" (my word, I'm sure they call it something else), where the machine would deliver the beam, then rotate around me 40 or 50 degrees, and repeat.  Each time the machine moved, the leaves of the collimator, which shape the beam, would move, too.  Again, they plan this all up front and it allows them to precisely change the size and shape of the field from multiple directions.  I think it's worth bringing up with your radiation oncologist if a similar approach might work for the cranial met.

                                      Keep up the good fight Artie, 
                                      Joe

                                      RJoeyB
                                      Participant

                                        No need to apologize Artie — you're still going through a lot.  It's been good to read about your overall move forward with PD-1, sorry to hear that you're suffering some physical effects of these specific tumors.

                                        I think you're right to be glad that there is nothing actually in the brain right now, what a difference a centimeter or two makes!  From how you describe it in your most recent post, I think I'm a little more clear.  Originally, I thought it was perhaps a met between the cranium and the brain, but as you describe it just now, it sounds like it's truly a bone met, protruding from the bone down into the cranial cavity and pressing on the dura (the protective outer layer of the brain) and also a little upward into the scalp?  Can you feel a bump on your scalp where this met is located?

                                        The size of it will require a larger radiation field and that may be influencing your radiation oncologist's decision on the kind of radiation delivery to use.  I've heard 2.5- to 3.0-cm around as the upper limit for SRS/SBRT, and with the proximity to the brain, as much as possible they want to minimize damage to brain tissue.  They'll need to target the entire mass; unfortunately that can't use a narrow beam and target just the center, but instead deliver the maximum dose to the entire tumor using a wider field.  I would think that would still be possible, with sufficient planning, using SBRT at the higher doses that are more effective for melanoma.  As I've written in other posts, when most people think of SRS or SBRT, they think of Gamma Knife of CyberKnife, which I believe use narrower beams.  However, CyberKnife, for example, is just a small linear accelerator ("linac") on a robotic arm, which allows it to full 3-D motion in space.  SBRT can be done with a traditional linac (the one that looks like a giant KitchenAid mixer), too, again, with the proper planning tools, which would allow for wider, non-uniform field sizes and shapes.  When I had a smaller met in my lung radiated last winter, it was SBRT on a traditional linac — 30-Gy given in 5 fractions of 6-Gy each on a M-W-F schedule.  Each 6-Gy fraction was further divided into 7 or 8 "subfractions" (my word, I'm sure they call it something else), where the machine would deliver the beam, then rotate around me 40 or 50 degrees, and repeat.  Each time the machine moved, the leaves of the collimator, which shape the beam, would move, too.  Again, they plan this all up front and it allows them to precisely change the size and shape of the field from multiple directions.  I think it's worth bringing up with your radiation oncologist if a similar approach might work for the cranial met.

                                        Keep up the good fight Artie, 
                                        Joe

                                        RJoeyB
                                        Participant

                                          No need to apologize Artie — you're still going through a lot.  It's been good to read about your overall move forward with PD-1, sorry to hear that you're suffering some physical effects of these specific tumors.

                                          I think you're right to be glad that there is nothing actually in the brain right now, what a difference a centimeter or two makes!  From how you describe it in your most recent post, I think I'm a little more clear.  Originally, I thought it was perhaps a met between the cranium and the brain, but as you describe it just now, it sounds like it's truly a bone met, protruding from the bone down into the cranial cavity and pressing on the dura (the protective outer layer of the brain) and also a little upward into the scalp?  Can you feel a bump on your scalp where this met is located?

                                          The size of it will require a larger radiation field and that may be influencing your radiation oncologist's decision on the kind of radiation delivery to use.  I've heard 2.5- to 3.0-cm around as the upper limit for SRS/SBRT, and with the proximity to the brain, as much as possible they want to minimize damage to brain tissue.  They'll need to target the entire mass; unfortunately that can't use a narrow beam and target just the center, but instead deliver the maximum dose to the entire tumor using a wider field.  I would think that would still be possible, with sufficient planning, using SBRT at the higher doses that are more effective for melanoma.  As I've written in other posts, when most people think of SRS or SBRT, they think of Gamma Knife of CyberKnife, which I believe use narrower beams.  However, CyberKnife, for example, is just a small linear accelerator ("linac") on a robotic arm, which allows it to full 3-D motion in space.  SBRT can be done with a traditional linac (the one that looks like a giant KitchenAid mixer), too, again, with the proper planning tools, which would allow for wider, non-uniform field sizes and shapes.  When I had a smaller met in my lung radiated last winter, it was SBRT on a traditional linac — 30-Gy given in 5 fractions of 6-Gy each on a M-W-F schedule.  Each 6-Gy fraction was further divided into 7 or 8 "subfractions" (my word, I'm sure they call it something else), where the machine would deliver the beam, then rotate around me 40 or 50 degrees, and repeat.  Each time the machine moved, the leaves of the collimator, which shape the beam, would move, too.  Again, they plan this all up front and it allows them to precisely change the size and shape of the field from multiple directions.  I think it's worth bringing up with your radiation oncologist if a similar approach might work for the cranial met.

                                          Keep up the good fight Artie, 
                                          Joe

                                        arthurjedi007
                                        Participant

                                          I got my MRI report today. I hadn't heard from the Dr so I got it myself. I think I'm really lucky. The worse tumor which is what they plan to radiate "involves the calvarium and extends into the cranial vault involving the dura and displacing the brain and extends into the scalp… blah blah about the size… I do not see definite edema within the brain." It is also bigger than it was in my last mri on Feb 3rd. About 3.65 cm x 2.8 cm now vs 2.8cm by 1.1 cm then. The other 2 similar tumors are smaller "less expansile" than Feb 3rd so I assume that must be either the taf/mek I was on except no report said it or probably the pd1 I'm on now.

                                          "No new lesions are seen. No enhancing brain metastases are seen."

                                          So if I understand right the main tumor is basically pressing on my brain but there is no detectable mel in the brain. So that sounds good to me.

                                          There are lots of fractures in my spine but the Dr is planning on radiating those 2 spots too.

                                          I see the Dr tomorrow so I will ask him about the minimum 6 gray per zap for mel tumors. I think we will probably start the radiation on 9/5.

                                          Again thank you very much Joe. I'm sorry I'm not super responsive. This pressure in my skull is kind of difficult to deal with. But others are way worse than me so I consider myself lucky and very blessed.

                                          Artie

                                           

                                          arthurjedi007
                                          Participant

                                            I got my MRI report today. I hadn't heard from the Dr so I got it myself. I think I'm really lucky. The worse tumor which is what they plan to radiate "involves the calvarium and extends into the cranial vault involving the dura and displacing the brain and extends into the scalp… blah blah about the size… I do not see definite edema within the brain." It is also bigger than it was in my last mri on Feb 3rd. About 3.65 cm x 2.8 cm now vs 2.8cm by 1.1 cm then. The other 2 similar tumors are smaller "less expansile" than Feb 3rd so I assume that must be either the taf/mek I was on except no report said it or probably the pd1 I'm on now.

                                            "No new lesions are seen. No enhancing brain metastases are seen."

                                            So if I understand right the main tumor is basically pressing on my brain but there is no detectable mel in the brain. So that sounds good to me.

                                            There are lots of fractures in my spine but the Dr is planning on radiating those 2 spots too.

                                            I see the Dr tomorrow so I will ask him about the minimum 6 gray per zap for mel tumors. I think we will probably start the radiation on 9/5.

                                            Again thank you very much Joe. I'm sorry I'm not super responsive. This pressure in my skull is kind of difficult to deal with. But others are way worse than me so I consider myself lucky and very blessed.

                                            Artie

                                             

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