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HelperDaughter

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      HelperDaughter
      Participant

        I'm glad to hear all went well with your husband's surgery.

        My mom just had a craniotomy on Tuesday (11/29/11), which also went well, fortunately.  The neurosurgeon told us the surgery was going to go 2.5 – 3.5 hours.  About 1 hour into surgery, we were called up to the surgical suite.  I started to panic, thinking the surgeon was going to come out and tell us she had had some horrible intra-op complication.  But nope, the surgery went much faster than expected and they got all of it.  Before surgery they told us it was 1.5 cm and bleeding.  When the surgeon spoke with us, she told us it was "a bit bigger" and made a circle with her fingers bigger than a quarter, which made me unhappy, as the imaging study had just been done weeks before (seemed like fast growth to me). Anyway, be grateful for whatever you can, i try to keep remembering – they got it all.

        This was my mom's second brain mass.  The first one (1 cm) was completely eliminated a few months ago with SRS, which I think is the same thing as gamma knife.  The worst thing about that procedure, according to my mom, was the head cage.  I think one of the screws was too tight and pretty painful for the duration (why she didn't tell them is beyond me).  She had a headache afterward and that spot on her head was sore from the screws, but that was pretty much it.  A subsequent scan showed some swelling to the area that they thought might be somehow related to the ipi my mom was taking.  They said they see that sometimes with ipi patients and that they think it's a good sign (must have been in my mom's case since that particular tumor was eradicated).

        I would go with SRS if you can, especially if it's the radiation oncologist recommending it.  That's what they do.  Surgeons don't do radiation.  I guess they do make recommendations, though, since after surgery my mom's neurosurgeon also said that she wanted some radiation to the area.  I'm assuming it's the SRS again since she says she got the whole tumor.  I think there's a 1 cm limit on SRS.  I think WBR is also associated with increased problems, like cognitive deficits, memory loss, whatnot.  If the oncologist thinks they can keep the radiation confined to the area, I say why irradiate the whole brain? 

        I hope this helps.

        HelperDaughter
        Participant

          I'm glad to hear all went well with your husband's surgery.

          My mom just had a craniotomy on Tuesday (11/29/11), which also went well, fortunately.  The neurosurgeon told us the surgery was going to go 2.5 – 3.5 hours.  About 1 hour into surgery, we were called up to the surgical suite.  I started to panic, thinking the surgeon was going to come out and tell us she had had some horrible intra-op complication.  But nope, the surgery went much faster than expected and they got all of it.  Before surgery they told us it was 1.5 cm and bleeding.  When the surgeon spoke with us, she told us it was "a bit bigger" and made a circle with her fingers bigger than a quarter, which made me unhappy, as the imaging study had just been done weeks before (seemed like fast growth to me). Anyway, be grateful for whatever you can, i try to keep remembering – they got it all.

          This was my mom's second brain mass.  The first one (1 cm) was completely eliminated a few months ago with SRS, which I think is the same thing as gamma knife.  The worst thing about that procedure, according to my mom, was the head cage.  I think one of the screws was too tight and pretty painful for the duration (why she didn't tell them is beyond me).  She had a headache afterward and that spot on her head was sore from the screws, but that was pretty much it.  A subsequent scan showed some swelling to the area that they thought might be somehow related to the ipi my mom was taking.  They said they see that sometimes with ipi patients and that they think it's a good sign (must have been in my mom's case since that particular tumor was eradicated).

          I would go with SRS if you can, especially if it's the radiation oncologist recommending it.  That's what they do.  Surgeons don't do radiation.  I guess they do make recommendations, though, since after surgery my mom's neurosurgeon also said that she wanted some radiation to the area.  I'm assuming it's the SRS again since she says she got the whole tumor.  I think there's a 1 cm limit on SRS.  I think WBR is also associated with increased problems, like cognitive deficits, memory loss, whatnot.  If the oncologist thinks they can keep the radiation confined to the area, I say why irradiate the whole brain? 

          I hope this helps.

          HelperDaughter
          Participant

            I'm glad to hear all went well with your husband's surgery.

            My mom just had a craniotomy on Tuesday (11/29/11), which also went well, fortunately.  The neurosurgeon told us the surgery was going to go 2.5 – 3.5 hours.  About 1 hour into surgery, we were called up to the surgical suite.  I started to panic, thinking the surgeon was going to come out and tell us she had had some horrible intra-op complication.  But nope, the surgery went much faster than expected and they got all of it.  Before surgery they told us it was 1.5 cm and bleeding.  When the surgeon spoke with us, she told us it was "a bit bigger" and made a circle with her fingers bigger than a quarter, which made me unhappy, as the imaging study had just been done weeks before (seemed like fast growth to me). Anyway, be grateful for whatever you can, i try to keep remembering – they got it all.

            This was my mom's second brain mass.  The first one (1 cm) was completely eliminated a few months ago with SRS, which I think is the same thing as gamma knife.  The worst thing about that procedure, according to my mom, was the head cage.  I think one of the screws was too tight and pretty painful for the duration (why she didn't tell them is beyond me).  She had a headache afterward and that spot on her head was sore from the screws, but that was pretty much it.  A subsequent scan showed some swelling to the area that they thought might be somehow related to the ipi my mom was taking.  They said they see that sometimes with ipi patients and that they think it's a good sign (must have been in my mom's case since that particular tumor was eradicated).

            I would go with SRS if you can, especially if it's the radiation oncologist recommending it.  That's what they do.  Surgeons don't do radiation.  I guess they do make recommendations, though, since after surgery my mom's neurosurgeon also said that she wanted some radiation to the area.  I'm assuming it's the SRS again since she says she got the whole tumor.  I think there's a 1 cm limit on SRS.  I think WBR is also associated with increased problems, like cognitive deficits, memory loss, whatnot.  If the oncologist thinks they can keep the radiation confined to the area, I say why irradiate the whole brain? 

            I hope this helps.

            HelperDaughter
            Participant

              I'm glad to hear all went well with your husband's surgery.

              My mom just had a craniotomy on Tuesday (11/29/11), which also went well, fortunately.  The neurosurgeon told us the surgery was going to go 2.5 – 3.5 hours.  About 1 hour into surgery, we were called up to the surgical suite.  I started to panic, thinking the surgeon was going to come out and tell us she had had some horrible intra-op complication.  But nope, the surgery went much faster than expected and they got all of it.  Before surgery they told us it was 1.5 cm and bleeding.  When the surgeon spoke with us, she told us it was "a bit bigger" and made a circle with her fingers bigger than a quarter, which made me unhappy, as the imaging study had just been done weeks before (seemed like fast growth to me). Anyway, be grateful for whatever you can, i try to keep remembering – they got it all.

              This was my mom's second brain mass.  The first one (1 cm) was completely eliminated a few months ago with SRS, which I think is the same thing as gamma knife.  The worst thing about that procedure, according to my mom, was the head cage.  I think one of the screws was too tight and pretty painful for the duration (why she didn't tell them is beyond me).  She had a headache afterward and that spot on her head was sore from the screws, but that was pretty much it.  A subsequent scan showed some swelling to the area that they thought might be somehow related to the ipi my mom was taking.  They said they see that sometimes with ipi patients and that they think it's a good sign (must have been in my mom's case since that particular tumor was eradicated).

              I would go with SRS if you can, especially if it's the radiation oncologist recommending it.  That's what they do.  Surgeons don't do radiation.  I guess they do make recommendations, though, since after surgery my mom's neurosurgeon also said that she wanted some radiation to the area.  I'm assuming it's the SRS again since she says she got the whole tumor.  I think there's a 1 cm limit on SRS.  I think WBR is also associated with increased problems, like cognitive deficits, memory loss, whatnot.  If the oncologist thinks they can keep the radiation confined to the area, I say why irradiate the whole brain? 

              I hope this helps.

              HelperDaughter
              Participant

                I'm glad to hear all went well with your husband's surgery.

                My mom just had a craniotomy on Tuesday (11/29/11), which also went well, fortunately.  The neurosurgeon told us the surgery was going to go 2.5 – 3.5 hours.  About 1 hour into surgery, we were called up to the surgical suite.  I started to panic, thinking the surgeon was going to come out and tell us she had had some horrible intra-op complication.  But nope, the surgery went much faster than expected and they got all of it.  Before surgery they told us it was 1.5 cm and bleeding.  When the surgeon spoke with us, she told us it was "a bit bigger" and made a circle with her fingers bigger than a quarter, which made me unhappy, as the imaging study had just been done weeks before (seemed like fast growth to me). Anyway, be grateful for whatever you can, i try to keep remembering – they got it all.

                This was my mom's second brain mass.  The first one (1 cm) was completely eliminated a few months ago with SRS, which I think is the same thing as gamma knife.  The worst thing about that procedure, according to my mom, was the head cage.  I think one of the screws was too tight and pretty painful for the duration (why she didn't tell them is beyond me).  She had a headache afterward and that spot on her head was sore from the screws, but that was pretty much it.  A subsequent scan showed some swelling to the area that they thought might be somehow related to the ipi my mom was taking.  They said they see that sometimes with ipi patients and that they think it's a good sign (must have been in my mom's case since that particular tumor was eradicated).

                I would go with SRS if you can, especially if it's the radiation oncologist recommending it.  That's what they do.  Surgeons don't do radiation.  I guess they do make recommendations, though, since after surgery my mom's neurosurgeon also said that she wanted some radiation to the area.  I'm assuming it's the SRS again since she says she got the whole tumor.  I think there's a 1 cm limit on SRS.  I think WBR is also associated with increased problems, like cognitive deficits, memory loss, whatnot.  If the oncologist thinks they can keep the radiation confined to the area, I say why irradiate the whole brain? 

                I hope this helps.

                HelperDaughter
                Participant

                  I'm glad to hear all went well with your husband's surgery.

                  My mom just had a craniotomy on Tuesday (11/29/11), which also went well, fortunately.  The neurosurgeon told us the surgery was going to go 2.5 – 3.5 hours.  About 1 hour into surgery, we were called up to the surgical suite.  I started to panic, thinking the surgeon was going to come out and tell us she had had some horrible intra-op complication.  But nope, the surgery went much faster than expected and they got all of it.  Before surgery they told us it was 1.5 cm and bleeding.  When the surgeon spoke with us, she told us it was "a bit bigger" and made a circle with her fingers bigger than a quarter, which made me unhappy, as the imaging study had just been done weeks before (seemed like fast growth to me). Anyway, be grateful for whatever you can, i try to keep remembering – they got it all.

                  This was my mom's second brain mass.  The first one (1 cm) was completely eliminated a few months ago with SRS, which I think is the same thing as gamma knife.  The worst thing about that procedure, according to my mom, was the head cage.  I think one of the screws was too tight and pretty painful for the duration (why she didn't tell them is beyond me).  She had a headache afterward and that spot on her head was sore from the screws, but that was pretty much it.  A subsequent scan showed some swelling to the area that they thought might be somehow related to the ipi my mom was taking.  They said they see that sometimes with ipi patients and that they think it's a good sign (must have been in my mom's case since that particular tumor was eradicated).

                  I would go with SRS if you can, especially if it's the radiation oncologist recommending it.  That's what they do.  Surgeons don't do radiation.  I guess they do make recommendations, though, since after surgery my mom's neurosurgeon also said that she wanted some radiation to the area.  I'm assuming it's the SRS again since she says she got the whole tumor.  I think there's a 1 cm limit on SRS.  I think WBR is also associated with increased problems, like cognitive deficits, memory loss, whatnot.  If the oncologist thinks they can keep the radiation confined to the area, I say why irradiate the whole brain? 

                  I hope this helps.

                  HelperDaughter
                  Participant

                    It's been a bit over two months since I posted, but I did read your replies and thank you for your informative and (mostly) supportive posts (To the gentleman who took particular exception to the "tone" of my post, if you want to make someone feel bad, go kick a puppy).

                    Anyway, an update.  The first spot in the brain, which was 1 cm, was actually completely gone just like the radiation oncologist said – virtually promised- it would be.  The bad news is that there's another one in the back of the brain.  It's about 1.5 cm, but they can't tell exactly how big it is because it's bleeding.  It's not accessible by SRS because of the location.  My mom had some edema after the first SRS treatment and they said that edema in that particular area of the brain is bad.  It's the area of the brain responsible for eyesight.  She has no headaches or visual disturbances, which I suppose we are lucky for.  i feel like she's a little "off" – she keeps calling my dad by his first name to me, for example, instead of "Dad" like she normally does.  Just little things like that. 

                    Her post-ipi body PET scan was supposed to be December 1, but now it's the second week of December because she has to have brain surgery.  I just can't believe it – someone operating on my mom's brain – it makes me feel sick and shaky.  Also, it puts off the PET scan for another two weeks.  I almost don't want to know the PET scan results.  My mom is just so tired all the time, she's lost her appetite.  She said today the thought of turkey makes her want to barf.  She said her appetite is like when she was pregnant – certain smells and tastes that used to be OK are now awful.

                    She's anemic and needs transfusions of two units like every two weeks because there's a bleeding lesion in her duodenum.  But I don't understand why she feels SO bad all of the time.  It sounds like there's people here that have much bigger and more numerous tumors without feeling so terrible.  Plus, lots of people are anemic.   She was diagnosed in June, and in July, when she told me, she felt fine.  Everything was under 2 cm.  This is only November – can it really be happening this fast?

                    I know my mom thinks the Ipi isn't working, she told me so today.  She has a lymph node that still has a bump there, and she says she just keeps touching it and knowing it's there.  Plus, her duodenum is obviously still bleeding because she keeps needing blood.  I think the December 1 date was 20 weeks – either that or 24 weeks.  I'm scared she's losing hope, but I feel like I'm losing hope, too. 

                    She is seeing a melanoma specialist at SK (one poster asked, i think).  I don't know how to spell his name, but it sounds like Carbahol to me.  I keep thinking that Carbahol sounds like a type of radiation therapy. They haven't discussed other "options" yet – I think that's what the Dec.1 visit was for (assuming there ARE other options).  Anyway, it doesn't seem like there are too many out there for her, given her brain mets, BRAF negative, etc. In my last post I was gung-ho on research – I just stopped.  It was too depressing and my mom doesn't want to talk about it with me anyway.

                    I am trying to be grateful to have had 31 years with my mom.  Her attitude is that she has had 64 wonderful years, a couple of years of retirement, and if that's it, that's it, don't be greedy.  I'm not ready to let her go, but I can see her point.  I can't even fathom what this must be like for people in their 20s, 30s, and 40s, with small children, new marriages, and full-time jobs. Anyway, thanks for reading (if you still are, at this point) and if it's not presumptuous of me to ask, wish us luck in these next few weeks.

                    HelperDaughter
                    Participant

                      It's been a bit over two months since I posted, but I did read your replies and thank you for your informative and (mostly) supportive posts (To the gentleman who took particular exception to the "tone" of my post, if you want to make someone feel bad, go kick a puppy).

                      Anyway, an update.  The first spot in the brain, which was 1 cm, was actually completely gone just like the radiation oncologist said – virtually promised- it would be.  The bad news is that there's another one in the back of the brain.  It's about 1.5 cm, but they can't tell exactly how big it is because it's bleeding.  It's not accessible by SRS because of the location.  My mom had some edema after the first SRS treatment and they said that edema in that particular area of the brain is bad.  It's the area of the brain responsible for eyesight.  She has no headaches or visual disturbances, which I suppose we are lucky for.  i feel like she's a little "off" – she keeps calling my dad by his first name to me, for example, instead of "Dad" like she normally does.  Just little things like that. 

                      Her post-ipi body PET scan was supposed to be December 1, but now it's the second week of December because she has to have brain surgery.  I just can't believe it – someone operating on my mom's brain – it makes me feel sick and shaky.  Also, it puts off the PET scan for another two weeks.  I almost don't want to know the PET scan results.  My mom is just so tired all the time, she's lost her appetite.  She said today the thought of turkey makes her want to barf.  She said her appetite is like when she was pregnant – certain smells and tastes that used to be OK are now awful.

                      She's anemic and needs transfusions of two units like every two weeks because there's a bleeding lesion in her duodenum.  But I don't understand why she feels SO bad all of the time.  It sounds like there's people here that have much bigger and more numerous tumors without feeling so terrible.  Plus, lots of people are anemic.   She was diagnosed in June, and in July, when she told me, she felt fine.  Everything was under 2 cm.  This is only November – can it really be happening this fast?

                      I know my mom thinks the Ipi isn't working, she told me so today.  She has a lymph node that still has a bump there, and she says she just keeps touching it and knowing it's there.  Plus, her duodenum is obviously still bleeding because she keeps needing blood.  I think the December 1 date was 20 weeks – either that or 24 weeks.  I'm scared she's losing hope, but I feel like I'm losing hope, too. 

                      She is seeing a melanoma specialist at SK (one poster asked, i think).  I don't know how to spell his name, but it sounds like Carbahol to me.  I keep thinking that Carbahol sounds like a type of radiation therapy. They haven't discussed other "options" yet – I think that's what the Dec.1 visit was for (assuming there ARE other options).  Anyway, it doesn't seem like there are too many out there for her, given her brain mets, BRAF negative, etc. In my last post I was gung-ho on research – I just stopped.  It was too depressing and my mom doesn't want to talk about it with me anyway.

                      I am trying to be grateful to have had 31 years with my mom.  Her attitude is that she has had 64 wonderful years, a couple of years of retirement, and if that's it, that's it, don't be greedy.  I'm not ready to let her go, but I can see her point.  I can't even fathom what this must be like for people in their 20s, 30s, and 40s, with small children, new marriages, and full-time jobs. Anyway, thanks for reading (if you still are, at this point) and if it's not presumptuous of me to ask, wish us luck in these next few weeks.

                      HelperDaughter
                      Participant

                        It's been a bit over two months since I posted, but I did read your replies and thank you for your informative and (mostly) supportive posts (To the gentleman who took particular exception to the "tone" of my post, if you want to make someone feel bad, go kick a puppy).

                        Anyway, an update.  The first spot in the brain, which was 1 cm, was actually completely gone just like the radiation oncologist said – virtually promised- it would be.  The bad news is that there's another one in the back of the brain.  It's about 1.5 cm, but they can't tell exactly how big it is because it's bleeding.  It's not accessible by SRS because of the location.  My mom had some edema after the first SRS treatment and they said that edema in that particular area of the brain is bad.  It's the area of the brain responsible for eyesight.  She has no headaches or visual disturbances, which I suppose we are lucky for.  i feel like she's a little "off" – she keeps calling my dad by his first name to me, for example, instead of "Dad" like she normally does.  Just little things like that. 

                        Her post-ipi body PET scan was supposed to be December 1, but now it's the second week of December because she has to have brain surgery.  I just can't believe it – someone operating on my mom's brain – it makes me feel sick and shaky.  Also, it puts off the PET scan for another two weeks.  I almost don't want to know the PET scan results.  My mom is just so tired all the time, she's lost her appetite.  She said today the thought of turkey makes her want to barf.  She said her appetite is like when she was pregnant – certain smells and tastes that used to be OK are now awful.

                        She's anemic and needs transfusions of two units like every two weeks because there's a bleeding lesion in her duodenum.  But I don't understand why she feels SO bad all of the time.  It sounds like there's people here that have much bigger and more numerous tumors without feeling so terrible.  Plus, lots of people are anemic.   She was diagnosed in June, and in July, when she told me, she felt fine.  Everything was under 2 cm.  This is only November – can it really be happening this fast?

                        I know my mom thinks the Ipi isn't working, she told me so today.  She has a lymph node that still has a bump there, and she says she just keeps touching it and knowing it's there.  Plus, her duodenum is obviously still bleeding because she keeps needing blood.  I think the December 1 date was 20 weeks – either that or 24 weeks.  I'm scared she's losing hope, but I feel like I'm losing hope, too. 

                        She is seeing a melanoma specialist at SK (one poster asked, i think).  I don't know how to spell his name, but it sounds like Carbahol to me.  I keep thinking that Carbahol sounds like a type of radiation therapy. They haven't discussed other "options" yet – I think that's what the Dec.1 visit was for (assuming there ARE other options).  Anyway, it doesn't seem like there are too many out there for her, given her brain mets, BRAF negative, etc. In my last post I was gung-ho on research – I just stopped.  It was too depressing and my mom doesn't want to talk about it with me anyway.

                        I am trying to be grateful to have had 31 years with my mom.  Her attitude is that she has had 64 wonderful years, a couple of years of retirement, and if that's it, that's it, don't be greedy.  I'm not ready to let her go, but I can see her point.  I can't even fathom what this must be like for people in their 20s, 30s, and 40s, with small children, new marriages, and full-time jobs. Anyway, thanks for reading (if you still are, at this point) and if it's not presumptuous of me to ask, wish us luck in these next few weeks.

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