› Forums › General Melanoma Community › CT/PET For Brain Surveillance
- This topic has 66 replies, 11 voices, and was last updated 9 years, 9 months ago by
_Paul_.
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- August 25, 2015 at 2:28 am
I know many here would say MRI is crucial for brain surveillance but my onc says without symptoms that a CT and/or CT/PET would suffice. I question whether I should just ask for it or find another onc who would be more agressive with scans.
Do symptoms usually present themselves? What are common symptoms?
What is likelihood of Stage 4 getting brain mets?
Are treatments effective for brain mets? Radiation? Does ipi, keytruda and others pass the blood-brain barrier?
I'm giving myself a lot of stress just thinking about this lately. I feel fine but we all know what stress does to us…I'm just in an anxiety phase lately and just trying to work my through. Posting here and getting feedback usually helps.
Thanks…be well!!!
Josh
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- August 25, 2015 at 5:26 am
Josh,
I watched a webinar with a group of oncologists and one question was about preventative scans. There were differences of opinion. One of them in particular didn't put a lot of weight in preventative scans in part because, if I remember correctly, he asserted that new disease was discovered in most of his patients by the appearance of symptoms, rather than being caught in a scan. He wasn't talking about the brain specifically, more about all situations.
My first brain tumor (2010) was found on a PET/CT scan. My second set (2011) was found by symptoms. The 2010 PET/CT probably got me in to treatment a couple of weeks earlier than waiting for symptoms, which started to show up pretty dramatically a week or two after the scan. In 2011 the symptoms showed up a few weeks earlier than I would have had my next MRI. After craniotomy surgery and Gamma Knife I got IPI. My oncologist at that time thinks it's very likely I got benefit from IPI in my brain.
I don't think there's any one symptom typical of a brain tumor. Rather there are as many possible symptoms (dysfunctions) as there are individual functions in the brain to mess with. I certainly had 2 very different sets of symptoms, matching the locations of the brain tumors which were in different lobes/brain areas each time.
More recently a CT scan did catch something much earlier than would have been found without scans — albeit somewhere not in my brain. I haven't had a brain MRI since March 2014, which is when my current clinical trial started for the tumors found in chest lymph nodes. It's not required by the trial. I could push for one from my regular oncologist. I haven't. That's a combination of hoping the treatment (PD1 plus another drug) is having protective effects in my brain, combined with not wanting anything that might be seen in an MRI to upset the apple cart and have them suspend me from the trial.Hope that helps! Kyle -
- August 25, 2015 at 5:26 am
Josh,
I watched a webinar with a group of oncologists and one question was about preventative scans. There were differences of opinion. One of them in particular didn't put a lot of weight in preventative scans in part because, if I remember correctly, he asserted that new disease was discovered in most of his patients by the appearance of symptoms, rather than being caught in a scan. He wasn't talking about the brain specifically, more about all situations.
My first brain tumor (2010) was found on a PET/CT scan. My second set (2011) was found by symptoms. The 2010 PET/CT probably got me in to treatment a couple of weeks earlier than waiting for symptoms, which started to show up pretty dramatically a week or two after the scan. In 2011 the symptoms showed up a few weeks earlier than I would have had my next MRI. After craniotomy surgery and Gamma Knife I got IPI. My oncologist at that time thinks it's very likely I got benefit from IPI in my brain.
I don't think there's any one symptom typical of a brain tumor. Rather there are as many possible symptoms (dysfunctions) as there are individual functions in the brain to mess with. I certainly had 2 very different sets of symptoms, matching the locations of the brain tumors which were in different lobes/brain areas each time.
More recently a CT scan did catch something much earlier than would have been found without scans — albeit somewhere not in my brain. I haven't had a brain MRI since March 2014, which is when my current clinical trial started for the tumors found in chest lymph nodes. It's not required by the trial. I could push for one from my regular oncologist. I haven't. That's a combination of hoping the treatment (PD1 plus another drug) is having protective effects in my brain, combined with not wanting anything that might be seen in an MRI to upset the apple cart and have them suspend me from the trial.Hope that helps! Kyle-
- August 26, 2015 at 3:30 am
Thanks Kyle…my oncologist feels CT and/or PET/CT will suffice at this point. SHe always refernces risk/reward of scanning in general and is considering moving me to every 6 months even though I had local recurrence 8 months ago. I did get second opinion from another melanoma specialist who said given my casse, he's not sure he'd do much differently though if I asked, he would comply with ordering the scan. To that point, she would do the same. Like you I'm not sure I want to see anything on an MRI especially after I had clear PET/CT just a month ago. What a life we live!!!
Be well!!!
Josh
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- August 26, 2015 at 8:18 pm
One more thing– If I wasn't in a clinical trial, I would probably — almost certainly — get an MRI if insirance paid for it. The earlier brand in mets are caught the better. And there is no radiation. Although as I point out they occurred in moth my cases between scans. The CTs I get do not include the head. So I've not been scanned in brain for 17 months.
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- August 26, 2015 at 8:18 pm
One more thing– If I wasn't in a clinical trial, I would probably — almost certainly — get an MRI if insirance paid for it. The earlier brand in mets are caught the better. And there is no radiation. Although as I point out they occurred in moth my cases between scans. The CTs I get do not include the head. So I've not been scanned in brain for 17 months.
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- August 26, 2015 at 8:18 pm
One more thing– If I wasn't in a clinical trial, I would probably — almost certainly — get an MRI if insirance paid for it. The earlier brand in mets are caught the better. And there is no radiation. Although as I point out they occurred in moth my cases between scans. The CTs I get do not include the head. So I've not been scanned in brain for 17 months.
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- August 26, 2015 at 3:30 am
Thanks Kyle…my oncologist feels CT and/or PET/CT will suffice at this point. SHe always refernces risk/reward of scanning in general and is considering moving me to every 6 months even though I had local recurrence 8 months ago. I did get second opinion from another melanoma specialist who said given my casse, he's not sure he'd do much differently though if I asked, he would comply with ordering the scan. To that point, she would do the same. Like you I'm not sure I want to see anything on an MRI especially after I had clear PET/CT just a month ago. What a life we live!!!
Be well!!!
Josh
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- August 26, 2015 at 3:30 am
Thanks Kyle…my oncologist feels CT and/or PET/CT will suffice at this point. SHe always refernces risk/reward of scanning in general and is considering moving me to every 6 months even though I had local recurrence 8 months ago. I did get second opinion from another melanoma specialist who said given my casse, he's not sure he'd do much differently though if I asked, he would comply with ordering the scan. To that point, she would do the same. Like you I'm not sure I want to see anything on an MRI especially after I had clear PET/CT just a month ago. What a life we live!!!
Be well!!!
Josh
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- August 25, 2015 at 5:26 am
Josh,
I watched a webinar with a group of oncologists and one question was about preventative scans. There were differences of opinion. One of them in particular didn't put a lot of weight in preventative scans in part because, if I remember correctly, he asserted that new disease was discovered in most of his patients by the appearance of symptoms, rather than being caught in a scan. He wasn't talking about the brain specifically, more about all situations.
My first brain tumor (2010) was found on a PET/CT scan. My second set (2011) was found by symptoms. The 2010 PET/CT probably got me in to treatment a couple of weeks earlier than waiting for symptoms, which started to show up pretty dramatically a week or two after the scan. In 2011 the symptoms showed up a few weeks earlier than I would have had my next MRI. After craniotomy surgery and Gamma Knife I got IPI. My oncologist at that time thinks it's very likely I got benefit from IPI in my brain.
I don't think there's any one symptom typical of a brain tumor. Rather there are as many possible symptoms (dysfunctions) as there are individual functions in the brain to mess with. I certainly had 2 very different sets of symptoms, matching the locations of the brain tumors which were in different lobes/brain areas each time.
More recently a CT scan did catch something much earlier than would have been found without scans — albeit somewhere not in my brain. I haven't had a brain MRI since March 2014, which is when my current clinical trial started for the tumors found in chest lymph nodes. It's not required by the trial. I could push for one from my regular oncologist. I haven't. That's a combination of hoping the treatment (PD1 plus another drug) is having protective effects in my brain, combined with not wanting anything that might be seen in an MRI to upset the apple cart and have them suspend me from the trial.Hope that helps! Kyle -
- August 25, 2015 at 9:18 am
Josh, I'll defer to others on the type of scan (MRI doesn't have radiation), but I'm a strong believer in regular brain scans. Even though I've had brain mets, my insurance co will decline scans from time to time causing my onc or surgeon to appeal (peer to peer). They haven't lost an appeal. Good luck.
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- August 25, 2015 at 9:18 am
Josh, I'll defer to others on the type of scan (MRI doesn't have radiation), but I'm a strong believer in regular brain scans. Even though I've had brain mets, my insurance co will decline scans from time to time causing my onc or surgeon to appeal (peer to peer). They haven't lost an appeal. Good luck.
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- August 25, 2015 at 9:18 am
Josh, I'll defer to others on the type of scan (MRI doesn't have radiation), but I'm a strong believer in regular brain scans. Even though I've had brain mets, my insurance co will decline scans from time to time causing my onc or surgeon to appeal (peer to peer). They haven't lost an appeal. Good luck.
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- August 25, 2015 at 1:03 pm
Hi Josh, you ask some very good questions for stage 4 people to consider. When it comes to getting regular scans or not, I have been getting Mri scans every 3 months since having cyberknife treatments for 3 small mets in Oct. of 2013. I live near Ottawa the capital of Canada and this is the standard followed by my radiation oncologist. I have read on the forum many posters talk about not being given stereotatic treatments, as an option due to the fact that there were to many tumors. Whole brain radiation seems to have many cognitive function drawbacks and would not be something that I would want to experience. I watched a Webinar from the "Cancer Research Institute" by a leading Neuro-Oncologist at Dana-Farber in Boston named David A Reardon. He talked about break throughs in Cancer Immunotherapy and the break throughs in Brain Cancer using Immunotherapy, Dated June 23/2015. He is an expert in Glioblastoma but he also talked about the applications of Immunotherapy for other Metastatic cancers. He talks about some of the myths about what does and doesn't cross the blood brain barrier. I would recommend you watch the webinar. You also asked about symptoms, I didn't have any since the tumors were only 3 to 4 mm in size. I have been part of a clinical trial checkmate 67 which is due to end in January 2016. It is double blind so I have been getting Ipi or Nivo or both for the last year and a half. My thoughts are that Immunotherapy does work in keeping Melanoma from growing or returning in the brain or else where in the body. The question that I find myself asking today is for how long, I guess that the data from checkmate 67 and other studies will give us all a much clearer picture. Wishing you the best!!! Ed
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- August 25, 2015 at 1:03 pm
Hi Josh, you ask some very good questions for stage 4 people to consider. When it comes to getting regular scans or not, I have been getting Mri scans every 3 months since having cyberknife treatments for 3 small mets in Oct. of 2013. I live near Ottawa the capital of Canada and this is the standard followed by my radiation oncologist. I have read on the forum many posters talk about not being given stereotatic treatments, as an option due to the fact that there were to many tumors. Whole brain radiation seems to have many cognitive function drawbacks and would not be something that I would want to experience. I watched a Webinar from the "Cancer Research Institute" by a leading Neuro-Oncologist at Dana-Farber in Boston named David A Reardon. He talked about break throughs in Cancer Immunotherapy and the break throughs in Brain Cancer using Immunotherapy, Dated June 23/2015. He is an expert in Glioblastoma but he also talked about the applications of Immunotherapy for other Metastatic cancers. He talks about some of the myths about what does and doesn't cross the blood brain barrier. I would recommend you watch the webinar. You also asked about symptoms, I didn't have any since the tumors were only 3 to 4 mm in size. I have been part of a clinical trial checkmate 67 which is due to end in January 2016. It is double blind so I have been getting Ipi or Nivo or both for the last year and a half. My thoughts are that Immunotherapy does work in keeping Melanoma from growing or returning in the brain or else where in the body. The question that I find myself asking today is for how long, I guess that the data from checkmate 67 and other studies will give us all a much clearer picture. Wishing you the best!!! Ed
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- August 25, 2015 at 1:03 pm
Hi Josh, you ask some very good questions for stage 4 people to consider. When it comes to getting regular scans or not, I have been getting Mri scans every 3 months since having cyberknife treatments for 3 small mets in Oct. of 2013. I live near Ottawa the capital of Canada and this is the standard followed by my radiation oncologist. I have read on the forum many posters talk about not being given stereotatic treatments, as an option due to the fact that there were to many tumors. Whole brain radiation seems to have many cognitive function drawbacks and would not be something that I would want to experience. I watched a Webinar from the "Cancer Research Institute" by a leading Neuro-Oncologist at Dana-Farber in Boston named David A Reardon. He talked about break throughs in Cancer Immunotherapy and the break throughs in Brain Cancer using Immunotherapy, Dated June 23/2015. He is an expert in Glioblastoma but he also talked about the applications of Immunotherapy for other Metastatic cancers. He talks about some of the myths about what does and doesn't cross the blood brain barrier. I would recommend you watch the webinar. You also asked about symptoms, I didn't have any since the tumors were only 3 to 4 mm in size. I have been part of a clinical trial checkmate 67 which is due to end in January 2016. It is double blind so I have been getting Ipi or Nivo or both for the last year and a half. My thoughts are that Immunotherapy does work in keeping Melanoma from growing or returning in the brain or else where in the body. The question that I find myself asking today is for how long, I guess that the data from checkmate 67 and other studies will give us all a much clearer picture. Wishing you the best!!! Ed
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- August 26, 2015 at 3:34 am
Thanks for response Ed, I'm going to checkout that webinar…sounds interesting and promosing!When your leisons were found, did you have other tumors in your body or did they just present in the brain? I'm just curious as to whether or not they show up in brain without being anywhere else. With melanoma it seems anything is possible.
Hope you're doing good.
Josh
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- August 26, 2015 at 1:01 pm
They first found a tumor on my lung on a regular x-ray instead of Ct, my oncologist was trying to keep my exposure to radiation down. In order to get into the clinical trial called checkmate 67, they had to due a brain scan as part of the criteria. I kind of got lucky that they scanned and that the tumors were only small. Yesterday, I had my regular 3 month mri scan review and everything remains clear in the brain. I had my 6 year old daughter with me and she asked to see a picture of daddy's brain. The Dr. showed her my new images along with the ones from two years ago showing the tumors. It was kind of neat to see what medical tecnology (cyberknife) is able to accomplish. Wishing you the best !!! Ed
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- August 26, 2015 at 1:01 pm
They first found a tumor on my lung on a regular x-ray instead of Ct, my oncologist was trying to keep my exposure to radiation down. In order to get into the clinical trial called checkmate 67, they had to due a brain scan as part of the criteria. I kind of got lucky that they scanned and that the tumors were only small. Yesterday, I had my regular 3 month mri scan review and everything remains clear in the brain. I had my 6 year old daughter with me and she asked to see a picture of daddy's brain. The Dr. showed her my new images along with the ones from two years ago showing the tumors. It was kind of neat to see what medical tecnology (cyberknife) is able to accomplish. Wishing you the best !!! Ed
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- August 26, 2015 at 1:01 pm
They first found a tumor on my lung on a regular x-ray instead of Ct, my oncologist was trying to keep my exposure to radiation down. In order to get into the clinical trial called checkmate 67, they had to due a brain scan as part of the criteria. I kind of got lucky that they scanned and that the tumors were only small. Yesterday, I had my regular 3 month mri scan review and everything remains clear in the brain. I had my 6 year old daughter with me and she asked to see a picture of daddy's brain. The Dr. showed her my new images along with the ones from two years ago showing the tumors. It was kind of neat to see what medical tecnology (cyberknife) is able to accomplish. Wishing you the best !!! Ed
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- August 26, 2015 at 3:34 am
Thanks for response Ed, I'm going to checkout that webinar…sounds interesting and promosing!When your leisons were found, did you have other tumors in your body or did they just present in the brain? I'm just curious as to whether or not they show up in brain without being anywhere else. With melanoma it seems anything is possible.
Hope you're doing good.
Josh
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- August 26, 2015 at 3:34 am
Thanks for response Ed, I'm going to checkout that webinar…sounds interesting and promosing!When your leisons were found, did you have other tumors in your body or did they just present in the brain? I'm just curious as to whether or not they show up in brain without being anywhere else. With melanoma it seems anything is possible.
Hope you're doing good.
Josh
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- August 25, 2015 at 2:31 pm
The brain always lights up on the pet. It might spot something on the edge but that's about it. However I would say almost all the time they combine it with a ct. The ct can show things in the brain but not quite as clear and accurate as a MRI. MRI should be the standard for the brain.
Artie
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- August 25, 2015 at 2:31 pm
The brain always lights up on the pet. It might spot something on the edge but that's about it. However I would say almost all the time they combine it with a ct. The ct can show things in the brain but not quite as clear and accurate as a MRI. MRI should be the standard for the brain.
Artie
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- August 25, 2015 at 2:31 pm
The brain always lights up on the pet. It might spot something on the edge but that's about it. However I would say almost all the time they combine it with a ct. The ct can show things in the brain but not quite as clear and accurate as a MRI. MRI should be the standard for the brain.
Artie
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- August 26, 2015 at 8:50 pm
Thanks for asking Josh. I'm actually feeling rather crummy. Been that way for a few weeks. I'm not sure if it's the nivolumab, disease or being depressed over trying to get into NIH after trying for so long and hard. Probably some of all 3.
Also found out Monday from the NIH scans I have about a baseball size tumor in each kidney. I imagine that has a lot to do with feeling crummy. I've felt weird pains for awhile but the doc thought they might be kidney stones. Now I know they are from the huge tumors. These are the only new tumors I've got since being on pd1. Kind of weird the location. Everything else has always started in bone. The NIH doc notes said it might be renal cell carcinoma. But it could be worse. My doc said the kidney blood work looks fine so it must be on the outside of the kidneys because so far it isn't affecting the kidney functions. I rattled off several possible things that could be done like surgery to remove the tumors since they aren't affecting the functioning a good surgeon might be able to get them and maintain their fine functioning. Also mentioned for renal cell they put radiation beads directly on the tumor in the kidney. Also mentioned an embolism. Of course external beam radiation. Or cryo or radio ablation. But typical here they don't want to do anything unless it becomes a problem then it takes weeks to make something happen so usually too late.
So I was about to setup the appointment for screening at Sarah cannon in Nashville for a trial there. With in the back of my mind maybe the one in San Antonio instead. But since I learned the size of those kidney tumors I called md anderson instead this morning. Just got some stuff faxed to them and left a message to make sure they got it. So I imagine in a couple weeks I'll be in Houston. I flew to Maryland for NIH ok so I think I can do it. At least thanks to the mayo ablation and cement in my spine seems to help strengthen it so I think I'll travel ok.
Im hoping md anderson will be willing to do something for these kidneys. Like there the surgery would be a two for one because I think they do til harvest in advance there and store it for months or maybe years for all I know. Granted that's major surgery and my doc said I'm a "fragile flower" and he's right. Plus I would have to be off the pd1 for some time but not sure how long. Or maybe they'll do other stuff. Plus hopefully with the plan for a better systemic treatment. I know the one in Nashville is also there. I also hope I don't have to redo the scans I just did at NIH, at least of course until I screen for a trial I agree too anyway. I don't think my kidneys can process anymore of that contrast.
My doc did say the chemo the Chicago doc wants me to do would not be good for me. He's very concerned I would drop fast and not be eligible for any treatment let alone the Chicago one. That's when he said I'm like a delicate flower.
Of course there's over 30 other tumors. A couple have grown out of the ribs and are invading my posterior chest wall. The ones in my left collar, left shoulder and left upper leg. The one in my skull pressing on my brain just to name a few so I guess those make me feel crummy too. The rest I think are all still in bone. Not sure yet if my spinal canal is still narrowing or if that ablation took care of the worst spot. I can't see the ct well enough to figure it out and the doc was too busy so far to see the NIH records yet.
So mda is the plan. I hope they help me.
Artie
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- August 27, 2015 at 9:33 pm
Good luck. Maybe we'll run into each other there.
Artie
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- August 27, 2015 at 9:33 pm
Good luck. Maybe we'll run into each other there.
Artie
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- August 27, 2015 at 9:33 pm
Good luck. Maybe we'll run into each other there.
Artie
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- August 26, 2015 at 8:50 pm
Thanks for asking Josh. I'm actually feeling rather crummy. Been that way for a few weeks. I'm not sure if it's the nivolumab, disease or being depressed over trying to get into NIH after trying for so long and hard. Probably some of all 3.
Also found out Monday from the NIH scans I have about a baseball size tumor in each kidney. I imagine that has a lot to do with feeling crummy. I've felt weird pains for awhile but the doc thought they might be kidney stones. Now I know they are from the huge tumors. These are the only new tumors I've got since being on pd1. Kind of weird the location. Everything else has always started in bone. The NIH doc notes said it might be renal cell carcinoma. But it could be worse. My doc said the kidney blood work looks fine so it must be on the outside of the kidneys because so far it isn't affecting the kidney functions. I rattled off several possible things that could be done like surgery to remove the tumors since they aren't affecting the functioning a good surgeon might be able to get them and maintain their fine functioning. Also mentioned for renal cell they put radiation beads directly on the tumor in the kidney. Also mentioned an embolism. Of course external beam radiation. Or cryo or radio ablation. But typical here they don't want to do anything unless it becomes a problem then it takes weeks to make something happen so usually too late.
So I was about to setup the appointment for screening at Sarah cannon in Nashville for a trial there. With in the back of my mind maybe the one in San Antonio instead. But since I learned the size of those kidney tumors I called md anderson instead this morning. Just got some stuff faxed to them and left a message to make sure they got it. So I imagine in a couple weeks I'll be in Houston. I flew to Maryland for NIH ok so I think I can do it. At least thanks to the mayo ablation and cement in my spine seems to help strengthen it so I think I'll travel ok.
Im hoping md anderson will be willing to do something for these kidneys. Like there the surgery would be a two for one because I think they do til harvest in advance there and store it for months or maybe years for all I know. Granted that's major surgery and my doc said I'm a "fragile flower" and he's right. Plus I would have to be off the pd1 for some time but not sure how long. Or maybe they'll do other stuff. Plus hopefully with the plan for a better systemic treatment. I know the one in Nashville is also there. I also hope I don't have to redo the scans I just did at NIH, at least of course until I screen for a trial I agree too anyway. I don't think my kidneys can process anymore of that contrast.
My doc did say the chemo the Chicago doc wants me to do would not be good for me. He's very concerned I would drop fast and not be eligible for any treatment let alone the Chicago one. That's when he said I'm like a delicate flower.
Of course there's over 30 other tumors. A couple have grown out of the ribs and are invading my posterior chest wall. The ones in my left collar, left shoulder and left upper leg. The one in my skull pressing on my brain just to name a few so I guess those make me feel crummy too. The rest I think are all still in bone. Not sure yet if my spinal canal is still narrowing or if that ablation took care of the worst spot. I can't see the ct well enough to figure it out and the doc was too busy so far to see the NIH records yet.
So mda is the plan. I hope they help me.
Artie
-
- August 26, 2015 at 8:50 pm
Thanks for asking Josh. I'm actually feeling rather crummy. Been that way for a few weeks. I'm not sure if it's the nivolumab, disease or being depressed over trying to get into NIH after trying for so long and hard. Probably some of all 3.
Also found out Monday from the NIH scans I have about a baseball size tumor in each kidney. I imagine that has a lot to do with feeling crummy. I've felt weird pains for awhile but the doc thought they might be kidney stones. Now I know they are from the huge tumors. These are the only new tumors I've got since being on pd1. Kind of weird the location. Everything else has always started in bone. The NIH doc notes said it might be renal cell carcinoma. But it could be worse. My doc said the kidney blood work looks fine so it must be on the outside of the kidneys because so far it isn't affecting the kidney functions. I rattled off several possible things that could be done like surgery to remove the tumors since they aren't affecting the functioning a good surgeon might be able to get them and maintain their fine functioning. Also mentioned for renal cell they put radiation beads directly on the tumor in the kidney. Also mentioned an embolism. Of course external beam radiation. Or cryo or radio ablation. But typical here they don't want to do anything unless it becomes a problem then it takes weeks to make something happen so usually too late.
So I was about to setup the appointment for screening at Sarah cannon in Nashville for a trial there. With in the back of my mind maybe the one in San Antonio instead. But since I learned the size of those kidney tumors I called md anderson instead this morning. Just got some stuff faxed to them and left a message to make sure they got it. So I imagine in a couple weeks I'll be in Houston. I flew to Maryland for NIH ok so I think I can do it. At least thanks to the mayo ablation and cement in my spine seems to help strengthen it so I think I'll travel ok.
Im hoping md anderson will be willing to do something for these kidneys. Like there the surgery would be a two for one because I think they do til harvest in advance there and store it for months or maybe years for all I know. Granted that's major surgery and my doc said I'm a "fragile flower" and he's right. Plus I would have to be off the pd1 for some time but not sure how long. Or maybe they'll do other stuff. Plus hopefully with the plan for a better systemic treatment. I know the one in Nashville is also there. I also hope I don't have to redo the scans I just did at NIH, at least of course until I screen for a trial I agree too anyway. I don't think my kidneys can process anymore of that contrast.
My doc did say the chemo the Chicago doc wants me to do would not be good for me. He's very concerned I would drop fast and not be eligible for any treatment let alone the Chicago one. That's when he said I'm like a delicate flower.
Of course there's over 30 other tumors. A couple have grown out of the ribs and are invading my posterior chest wall. The ones in my left collar, left shoulder and left upper leg. The one in my skull pressing on my brain just to name a few so I guess those make me feel crummy too. The rest I think are all still in bone. Not sure yet if my spinal canal is still narrowing or if that ablation took care of the worst spot. I can't see the ct well enough to figure it out and the doc was too busy so far to see the NIH records yet.
So mda is the plan. I hope they help me.
Artie
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- August 25, 2015 at 3:53 pm
My husband's doc said, wait for symptoms. If you go looking for something and you find it and it isn't causing problems are you going to risk doing something about it? As for symptoms I'd be looking for vision changes, memory/word retrival, balance issue, palsy type stuff. I'd guess it would be similar to a stroke although probably with a slower onset.
I believe the immunotherapies do shrink the brain mets. The brain is pretty good at adapting so as long as the treatment be it gamma knife or ipi can stop or even slow the tumor growth the brain can adapt.
Good luck,
Kathy
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- August 25, 2015 at 3:53 pm
My husband's doc said, wait for symptoms. If you go looking for something and you find it and it isn't causing problems are you going to risk doing something about it? As for symptoms I'd be looking for vision changes, memory/word retrival, balance issue, palsy type stuff. I'd guess it would be similar to a stroke although probably with a slower onset.
I believe the immunotherapies do shrink the brain mets. The brain is pretty good at adapting so as long as the treatment be it gamma knife or ipi can stop or even slow the tumor growth the brain can adapt.
Good luck,
Kathy
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- August 25, 2015 at 3:53 pm
My husband's doc said, wait for symptoms. If you go looking for something and you find it and it isn't causing problems are you going to risk doing something about it? As for symptoms I'd be looking for vision changes, memory/word retrival, balance issue, palsy type stuff. I'd guess it would be similar to a stroke although probably with a slower onset.
I believe the immunotherapies do shrink the brain mets. The brain is pretty good at adapting so as long as the treatment be it gamma knife or ipi can stop or even slow the tumor growth the brain can adapt.
Good luck,
Kathy
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- August 25, 2015 at 5:36 pm
Hi Josh,
My husband's melanoma presented through a grand mal seizure from a brain met (he went straight to Stage IV). The ER docs did a CT scan of his brain and noted 2 lesions. The problematic, symptomatic one was around 2cm. He had had absolutely no other symptoms. Later on that day he had an MRI that showed a small lesion that was around 3mm (I'm a big fan of MRIs for this reason – CTs can see the bigger stuff but can miss some of the smaller lesions). Within 2 weeks he became very symptomatic (paralysis on the right side due to edema, trouble speaking, etc.). I don't think my husband's case is the norm, but I don't think it's that unique, either. I think getting an MRI would calm some of your anxiety…they always seem to help with my husband's!
To answer some of your other questions, I believe it's something like 40% of stage IV melanoma patients end up with brain mets. The brain seems to be one of mel's favorite places to go to. SRS (targeted radiation) has been noted to be effective with brain mets. My husband has had 9 tumors treated with SRS, and none have progressed, that we know of. All of them are either staying the same size or shrinking. We have been told that Keytruda (this is what my husband is on right now) and ipi both pass the blood brain barrier. There are also some studies out there that note that using SRS in combination with immunotherapy increases response rates. I believe Celeste posted the actual study about this not too long ago on another thread. It's worth checking out!
Best,
Katie
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- August 25, 2015 at 5:36 pm
Hi Josh,
My husband's melanoma presented through a grand mal seizure from a brain met (he went straight to Stage IV). The ER docs did a CT scan of his brain and noted 2 lesions. The problematic, symptomatic one was around 2cm. He had had absolutely no other symptoms. Later on that day he had an MRI that showed a small lesion that was around 3mm (I'm a big fan of MRIs for this reason – CTs can see the bigger stuff but can miss some of the smaller lesions). Within 2 weeks he became very symptomatic (paralysis on the right side due to edema, trouble speaking, etc.). I don't think my husband's case is the norm, but I don't think it's that unique, either. I think getting an MRI would calm some of your anxiety…they always seem to help with my husband's!
To answer some of your other questions, I believe it's something like 40% of stage IV melanoma patients end up with brain mets. The brain seems to be one of mel's favorite places to go to. SRS (targeted radiation) has been noted to be effective with brain mets. My husband has had 9 tumors treated with SRS, and none have progressed, that we know of. All of them are either staying the same size or shrinking. We have been told that Keytruda (this is what my husband is on right now) and ipi both pass the blood brain barrier. There are also some studies out there that note that using SRS in combination with immunotherapy increases response rates. I believe Celeste posted the actual study about this not too long ago on another thread. It's worth checking out!
Best,
Katie
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- August 25, 2015 at 5:36 pm
Hi Josh,
My husband's melanoma presented through a grand mal seizure from a brain met (he went straight to Stage IV). The ER docs did a CT scan of his brain and noted 2 lesions. The problematic, symptomatic one was around 2cm. He had had absolutely no other symptoms. Later on that day he had an MRI that showed a small lesion that was around 3mm (I'm a big fan of MRIs for this reason – CTs can see the bigger stuff but can miss some of the smaller lesions). Within 2 weeks he became very symptomatic (paralysis on the right side due to edema, trouble speaking, etc.). I don't think my husband's case is the norm, but I don't think it's that unique, either. I think getting an MRI would calm some of your anxiety…they always seem to help with my husband's!
To answer some of your other questions, I believe it's something like 40% of stage IV melanoma patients end up with brain mets. The brain seems to be one of mel's favorite places to go to. SRS (targeted radiation) has been noted to be effective with brain mets. My husband has had 9 tumors treated with SRS, and none have progressed, that we know of. All of them are either staying the same size or shrinking. We have been told that Keytruda (this is what my husband is on right now) and ipi both pass the blood brain barrier. There are also some studies out there that note that using SRS in combination with immunotherapy increases response rates. I believe Celeste posted the actual study about this not too long ago on another thread. It's worth checking out!
Best,
Katie
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- August 25, 2015 at 11:17 pm
Josh,
Please, Please get a Brain MRI… Insist on it.This disease is evil…if your dr. won't do it find one that will.
I know a fellow Melanoma warrior who said .. Even if you have to say you have headaches … Whatever!
Get Them!
Wishing you only the best!
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- August 25, 2015 at 11:17 pm
Josh,
Please, Please get a Brain MRI… Insist on it.This disease is evil…if your dr. won't do it find one that will.
I know a fellow Melanoma warrior who said .. Even if you have to say you have headaches … Whatever!
Get Them!
Wishing you only the best!
-
- August 25, 2015 at 11:17 pm
Josh,
Please, Please get a Brain MRI… Insist on it.This disease is evil…if your dr. won't do it find one that will.
I know a fellow Melanoma warrior who said .. Even if you have to say you have headaches … Whatever!
Get Them!
Wishing you only the best!
-
- August 26, 2015 at 3:08 pm
Josh – For me, my oncologist never relied on a CT for the brain… has always been an MRI. This was always done to supplement a full body PET/CT… while the PET/CT covered the brain, I do not see how you would be able to identify anything there as the whole brain lights up with heavy glucose uptake.
I will also say that my oncologist believes that while scans are important, your body will be the best diagnostic tool and often times it will be a symptom that leads to a scan which leads to some conclusion. So for us stage 4 guys, if we feel good let's celebrate that – I feel really good.
Kevin
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- August 26, 2015 at 3:08 pm
Josh – For me, my oncologist never relied on a CT for the brain… has always been an MRI. This was always done to supplement a full body PET/CT… while the PET/CT covered the brain, I do not see how you would be able to identify anything there as the whole brain lights up with heavy glucose uptake.
I will also say that my oncologist believes that while scans are important, your body will be the best diagnostic tool and often times it will be a symptom that leads to a scan which leads to some conclusion. So for us stage 4 guys, if we feel good let's celebrate that – I feel really good.
Kevin
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- August 26, 2015 at 3:08 pm
Josh – For me, my oncologist never relied on a CT for the brain… has always been an MRI. This was always done to supplement a full body PET/CT… while the PET/CT covered the brain, I do not see how you would be able to identify anything there as the whole brain lights up with heavy glucose uptake.
I will also say that my oncologist believes that while scans are important, your body will be the best diagnostic tool and often times it will be a symptom that leads to a scan which leads to some conclusion. So for us stage 4 guys, if we feel good let's celebrate that – I feel really good.
Kevin
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