CT/PET scan results & the beginnings of a new plan: radioembolism
Comments
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Good luck & many blessingslindaprocopio said:Met with the head Liver Surgeon to discuss my options today.
I have 2 appointments this week: today's with the head liver surgeon at the hospital; and on Wednesday I meet with the Interventional Radiologist who would do the actual Yttrium 90 seeding if I get approved. My oncologist wanted me to meet with the liver specialist so that we could review all of my options for my extensive liver mets, and get the bigger picture for down the road of things they could do to help me.
It was a very positive consultation; I am quite hopeful! He said that uterine cancers are very receptive to radiation, which is why women with uterine cancer get radiation ajuvently whereas ovarian cancer patients don't. He said the radioactive 'microbeads' (Yttrium 90) are inserted in 2 sessions 3 to 4 weeks apart, to the left side of the liver and later to the right. Then if my scans show that it has been effective at killing some of the cancer, they can even go back in and do MORE of it to help beat the cancer back even further. He said that a person could still have good liver function even if a LOT of their liver was involved in cancer. He really made me feel MUCH less like a 'short-timer'. My oncologist really wanted this liver expert's approval and concurrence before we took this idea any further, as he considers the Interventional Radiologist overly aggressive. But "overly aggressive" fits my mindset right now, and I am SOOOO hoping I'll be a candidate for this BIG MOVE!
I asked what would exclude me from getting this treatment. He said the Interventional Radiologist would probably do a sonogram, looking for anatomical abnormalities that would keep the radioactive beads from getting where they need to go, or that would allow them to travel outside the liver. That could keep me from getting this,...or my insurance could balk at the crazy high cost. So keep your fingers crossed for me, ladies, and I will keep you posted after I see the Interventional Radiologist on Wednesday if I have any news or tidbits.
Thank you for your update. Good news for you I hope on Wed.0 -
Keeping my fingers crossed,lindaprocopio said:Met with the head Liver Surgeon to discuss my options today.
I have 2 appointments this week: today's with the head liver surgeon at the hospital; and on Wednesday I meet with the Interventional Radiologist who would do the actual Yttrium 90 seeding if I get approved. My oncologist wanted me to meet with the liver specialist so that we could review all of my options for my extensive liver mets, and get the bigger picture for down the road of things they could do to help me.
It was a very positive consultation; I am quite hopeful! He said that uterine cancers are very receptive to radiation, which is why women with uterine cancer get radiation ajuvently whereas ovarian cancer patients don't. He said the radioactive 'microbeads' (Yttrium 90) are inserted in 2 sessions 3 to 4 weeks apart, to the left side of the liver and later to the right. Then if my scans show that it has been effective at killing some of the cancer, they can even go back in and do MORE of it to help beat the cancer back even further. He said that a person could still have good liver function even if a LOT of their liver was involved in cancer. He really made me feel MUCH less like a 'short-timer'. My oncologist really wanted this liver expert's approval and concurrence before we took this idea any further, as he considers the Interventional Radiologist overly aggressive. But "overly aggressive" fits my mindset right now, and I am SOOOO hoping I'll be a candidate for this BIG MOVE!
I asked what would exclude me from getting this treatment. He said the Interventional Radiologist would probably do a sonogram, looking for anatomical abnormalities that would keep the radioactive beads from getting where they need to go, or that would allow them to travel outside the liver. That could keep me from getting this,...or my insurance could balk at the crazy high cost. So keep your fingers crossed for me, ladies, and I will keep you posted after I see the Interventional Radiologist on Wednesday if I have any news or tidbits.
Keeping my fingers crossed, Linda!
I am glad you got some positive news today and will keep my fingers crossed that you can get the treatment and your insurance company approves it.
Kathy0 -
Blessings to youlindaprocopio said:Met with the head Liver Surgeon to discuss my options today.
I have 2 appointments this week: today's with the head liver surgeon at the hospital; and on Wednesday I meet with the Interventional Radiologist who would do the actual Yttrium 90 seeding if I get approved. My oncologist wanted me to meet with the liver specialist so that we could review all of my options for my extensive liver mets, and get the bigger picture for down the road of things they could do to help me.
It was a very positive consultation; I am quite hopeful! He said that uterine cancers are very receptive to radiation, which is why women with uterine cancer get radiation ajuvently whereas ovarian cancer patients don't. He said the radioactive 'microbeads' (Yttrium 90) are inserted in 2 sessions 3 to 4 weeks apart, to the left side of the liver and later to the right. Then if my scans show that it has been effective at killing some of the cancer, they can even go back in and do MORE of it to help beat the cancer back even further. He said that a person could still have good liver function even if a LOT of their liver was involved in cancer. He really made me feel MUCH less like a 'short-timer'. My oncologist really wanted this liver expert's approval and concurrence before we took this idea any further, as he considers the Interventional Radiologist overly aggressive. But "overly aggressive" fits my mindset right now, and I am SOOOO hoping I'll be a candidate for this BIG MOVE!
I asked what would exclude me from getting this treatment. He said the Interventional Radiologist would probably do a sonogram, looking for anatomical abnormalities that would keep the radioactive beads from getting where they need to go, or that would allow them to travel outside the liver. That could keep me from getting this,...or my insurance could balk at the crazy high cost. So keep your fingers crossed for me, ladies, and I will keep you posted after I see the Interventional Radiologist on Wednesday if I have any news or tidbits.
Linda, catching up on your treatment plan. You are a strong and amazing woman. Your grandchildren have a special "Nana"-Grandma!!! Keeping you in my prayers for acceptance for the radiation treatment to your liver. ((HUGS))
Lori0 -
Thank you Linda for keepinglindaprocopio said:Met with the head Liver Surgeon to discuss my options today.
I have 2 appointments this week: today's with the head liver surgeon at the hospital; and on Wednesday I meet with the Interventional Radiologist who would do the actual Yttrium 90 seeding if I get approved. My oncologist wanted me to meet with the liver specialist so that we could review all of my options for my extensive liver mets, and get the bigger picture for down the road of things they could do to help me.
It was a very positive consultation; I am quite hopeful! He said that uterine cancers are very receptive to radiation, which is why women with uterine cancer get radiation ajuvently whereas ovarian cancer patients don't. He said the radioactive 'microbeads' (Yttrium 90) are inserted in 2 sessions 3 to 4 weeks apart, to the left side of the liver and later to the right. Then if my scans show that it has been effective at killing some of the cancer, they can even go back in and do MORE of it to help beat the cancer back even further. He said that a person could still have good liver function even if a LOT of their liver was involved in cancer. He really made me feel MUCH less like a 'short-timer'. My oncologist really wanted this liver expert's approval and concurrence before we took this idea any further, as he considers the Interventional Radiologist overly aggressive. But "overly aggressive" fits my mindset right now, and I am SOOOO hoping I'll be a candidate for this BIG MOVE!
I asked what would exclude me from getting this treatment. He said the Interventional Radiologist would probably do a sonogram, looking for anatomical abnormalities that would keep the radioactive beads from getting where they need to go, or that would allow them to travel outside the liver. That could keep me from getting this,...or my insurance could balk at the crazy high cost. So keep your fingers crossed for me, ladies, and I will keep you posted after I see the Interventional Radiologist on Wednesday if I have any news or tidbits.
Thank you Linda for keeping us up to date on your progress. Your aggressiveness with pursuing all potential - and quite innovative - treatments is quite impressive. What one woman can do! You are an inspiration always and a reminder to not be accepting but to question and seek all possiblities. I hope this scenario works out, all ducks get in line to make it so.
Annie0 -
Fingers crossed for youlindaprocopio said:Met with the head Liver Surgeon to discuss my options today.
I have 2 appointments this week: today's with the head liver surgeon at the hospital; and on Wednesday I meet with the Interventional Radiologist who would do the actual Yttrium 90 seeding if I get approved. My oncologist wanted me to meet with the liver specialist so that we could review all of my options for my extensive liver mets, and get the bigger picture for down the road of things they could do to help me.
It was a very positive consultation; I am quite hopeful! He said that uterine cancers are very receptive to radiation, which is why women with uterine cancer get radiation ajuvently whereas ovarian cancer patients don't. He said the radioactive 'microbeads' (Yttrium 90) are inserted in 2 sessions 3 to 4 weeks apart, to the left side of the liver and later to the right. Then if my scans show that it has been effective at killing some of the cancer, they can even go back in and do MORE of it to help beat the cancer back even further. He said that a person could still have good liver function even if a LOT of their liver was involved in cancer. He really made me feel MUCH less like a 'short-timer'. My oncologist really wanted this liver expert's approval and concurrence before we took this idea any further, as he considers the Interventional Radiologist overly aggressive. But "overly aggressive" fits my mindset right now, and I am SOOOO hoping I'll be a candidate for this BIG MOVE!
I asked what would exclude me from getting this treatment. He said the Interventional Radiologist would probably do a sonogram, looking for anatomical abnormalities that would keep the radioactive beads from getting where they need to go, or that would allow them to travel outside the liver. That could keep me from getting this,...or my insurance could balk at the crazy high cost. So keep your fingers crossed for me, ladies, and I will keep you posted after I see the Interventional Radiologist on Wednesday if I have any news or tidbits.
Fingers, toes and everything crossed for you. Please keep us posted - you are our pathfinder.
Kindest wishes
Helen0 -
Hoping for the best for your second appointmentlindaprocopio said:Met with the head Liver Surgeon to discuss my options today.
I have 2 appointments this week: today's with the head liver surgeon at the hospital; and on Wednesday I meet with the Interventional Radiologist who would do the actual Yttrium 90 seeding if I get approved. My oncologist wanted me to meet with the liver specialist so that we could review all of my options for my extensive liver mets, and get the bigger picture for down the road of things they could do to help me.
It was a very positive consultation; I am quite hopeful! He said that uterine cancers are very receptive to radiation, which is why women with uterine cancer get radiation ajuvently whereas ovarian cancer patients don't. He said the radioactive 'microbeads' (Yttrium 90) are inserted in 2 sessions 3 to 4 weeks apart, to the left side of the liver and later to the right. Then if my scans show that it has been effective at killing some of the cancer, they can even go back in and do MORE of it to help beat the cancer back even further. He said that a person could still have good liver function even if a LOT of their liver was involved in cancer. He really made me feel MUCH less like a 'short-timer'. My oncologist really wanted this liver expert's approval and concurrence before we took this idea any further, as he considers the Interventional Radiologist overly aggressive. But "overly aggressive" fits my mindset right now, and I am SOOOO hoping I'll be a candidate for this BIG MOVE!
I asked what would exclude me from getting this treatment. He said the Interventional Radiologist would probably do a sonogram, looking for anatomical abnormalities that would keep the radioactive beads from getting where they need to go, or that would allow them to travel outside the liver. That could keep me from getting this,...or my insurance could balk at the crazy high cost. So keep your fingers crossed for me, ladies, and I will keep you posted after I see the Interventional Radiologist on Wednesday if I have any news or tidbits.
Hopes, prayers, fingers crossed, you've got it all.
I also think your "overly aggressive" interventional radiologist might take that same posture when dealing with your insurance company. Also, I've seen some research hospitals eat the cost of some off-label procedures and treatments, for the sake of innovation (and being the ones to design the next clinical trial to run).
May everything fall into place for you.0 -
Fingers and toes crossed
Wishing you all the best, as you continue to be our pathfinder and role model forever say never saying 'dye,' (couldn't write outthecorrectspelling!!!!)
Thanks for update,
Sara0 -
lindalindaprocopio said:Met with the head Liver Surgeon to discuss my options today.
I have 2 appointments this week: today's with the head liver surgeon at the hospital; and on Wednesday I meet with the Interventional Radiologist who would do the actual Yttrium 90 seeding if I get approved. My oncologist wanted me to meet with the liver specialist so that we could review all of my options for my extensive liver mets, and get the bigger picture for down the road of things they could do to help me.
It was a very positive consultation; I am quite hopeful! He said that uterine cancers are very receptive to radiation, which is why women with uterine cancer get radiation ajuvently whereas ovarian cancer patients don't. He said the radioactive 'microbeads' (Yttrium 90) are inserted in 2 sessions 3 to 4 weeks apart, to the left side of the liver and later to the right. Then if my scans show that it has been effective at killing some of the cancer, they can even go back in and do MORE of it to help beat the cancer back even further. He said that a person could still have good liver function even if a LOT of their liver was involved in cancer. He really made me feel MUCH less like a 'short-timer'. My oncologist really wanted this liver expert's approval and concurrence before we took this idea any further, as he considers the Interventional Radiologist overly aggressive. But "overly aggressive" fits my mindset right now, and I am SOOOO hoping I'll be a candidate for this BIG MOVE!
I asked what would exclude me from getting this treatment. He said the Interventional Radiologist would probably do a sonogram, looking for anatomical abnormalities that would keep the radioactive beads from getting where they need to go, or that would allow them to travel outside the liver. That could keep me from getting this,...or my insurance could balk at the crazy high cost. So keep your fingers crossed for me, ladies, and I will keep you posted after I see the Interventional Radiologist on Wednesday if I have any news or tidbits.
chances are you don't have any of those abnormalities, etc,. and that you will be a good candidate for the seeding. sounds so promising, so glad your husband was persistent. makes me realize that there are always more options, we just need to be determined enough to find them, ask questions, be aggressive. as far as your insurance goes, if you possibly can, pay for it out of pocket, then appeal if they deny it. it's worth it. we did it with the assay, which admittedly was only $3500, but a lot for us. we're in the process of appealing the denial to blue shield as we speak. just need a letter of medical necessity from my surgeon who we see today.
i just wouldn't let an insurance company decide what treatment i was allowed to have, and make life /death decisions for me. f....that!
in the meantime, dear heart, everything that can be crossed is, so you can't go wrong with all of us crossing fingers and toes, and eyes, and whatever else might work. we're with you every step of the way.
sisterhood and love, maggie0 -
Will be thinking of youSara Zipora said:Fingers and toes crossed
Wishing you all the best, as you continue to be our pathfinder and role model forever say never saying 'dye,' (couldn't write outthecorrectspelling!!!!)
Thanks for update,
Sara
tomorrow, crossing my fingers and toes, and joining with EVERYONE else on this board to send as much positive energy to you as is necessary to get you approved for this procedure.
You have a huge support system, and we are rooting for you!
Jill0 -
GREAT meeting with the Interventional radiologist today!Rewriter said:Will be thinking of you
tomorrow, crossing my fingers and toes, and joining with EVERYONE else on this board to send as much positive energy to you as is necessary to get you approved for this procedure.
You have a huge support system, and we are rooting for you!
Jill
The interventional radiologist took 2 hours with us today, almost as excited about doing this with me as I am about doing it with him. A resident sat in on the consultation, and a P.A. also spent a lot of time talking with us about it. They have only ever done ONE other radioembolism treatment for a gynecologic cancer patient (a cervical cancer patient whose metastisis was predominently in her liver), but they all believe they are on to something very promising as uterine cancer responds so well to radiation. But it really hit home how 'cuttimg edge' this is to try it for uterine cancer and I am proud and will be thrilled if I can be their guinea pig. Now if they can just sell the idea to my insurance provider!!
I learned a lot about the treatment and how the liver works. Did you know that cancer tumors create their own 'shunts' to get the blood they need? That is why I will have to have a 'dry run' of the procedure where they will shoot contrast up there to see if my cancer has built any shunts from my liver to my lungs or elsewhere. They are already planning )as a part of the treatment) on inserting plugs to any shunts in my liver that go down towards my bowel or lower regions. But if a shunt goes up into my lungs, they will need to shoot a different material in there to try and plug up that pathway to the lungs. If there is a shunt to the lungs that they can't plug, it will be too dangerous for me to get this treatment and that will be that. If I can get this radioembolism, it is an outpatient surgery that I would be awake for, and they would do half the liver first; give me 4 weeks to recover; and do the other half a month later. Each time I would be radioactive about 10 days and have to sleep alone and forego any close prolonged contact with anyone for 10 days. Other than some fatigue there are no other side effects; I should feel fine. Then I have to wait a minimum of 4 months before I can have an accurate PET scan because the radiation throws PET scans off.
Our fallback if I have a shunt to the lungs that cannot be plugged up, is that I could try chemoembolism instead of the radioembolism. This is chemo inserted directly into the artery and into the liver. It combines crazy-concentrated chemo with the blood-starving embolism qualities of the procedure, killing the cancer 2 ways. Chemo-embolism requires an overnight hospitalization to manage the expected accompanying pain and nausea. But chemoembolism is only being looked at if 'shunts' preclude me getting the radioembolism.
Now let's see how hard my insurance pushes back here. They have had 2 people with other cancers turned down flat by their insurance for radioembolism, even after appeal. Then we'll have to decide if we dare spend $200,000 of our OWN money on this. I don't think I could let my family do that for something palliative, not curative. & this IS a palliative thing; I still will have cancer when it's done. Just less of it. I won't even be in remission. But statistically radioembolism DOUBLES your life expectancy of time left on this beautiful earth. I'll keep you posted. Meanwhile I start tamoxifen/megace tomorrow to hold me during all of this.
Sorry for the LONG POST.0 -
Linda I am not sorry for your long postlindaprocopio said:GREAT meeting with the Interventional radiologist today!
The interventional radiologist took 2 hours with us today, almost as excited about doing this with me as I am about doing it with him. A resident sat in on the consultation, and a P.A. also spent a lot of time talking with us about it. They have only ever done ONE other radioembolism treatment for a gynecologic cancer patient (a cervical cancer patient whose metastisis was predominently in her liver), but they all believe they are on to something very promising as uterine cancer responds so well to radiation. But it really hit home how 'cuttimg edge' this is to try it for uterine cancer and I am proud and will be thrilled if I can be their guinea pig. Now if they can just sell the idea to my insurance provider!!
I learned a lot about the treatment and how the liver works. Did you know that cancer tumors create their own 'shunts' to get the blood they need? That is why I will have to have a 'dry run' of the procedure where they will shoot contrast up there to see if my cancer has built any shunts from my liver to my lungs or elsewhere. They are already planning )as a part of the treatment) on inserting plugs to any shunts in my liver that go down towards my bowel or lower regions. But if a shunt goes up into my lungs, they will need to shoot a different material in there to try and plug up that pathway to the lungs. If there is a shunt to the lungs that they can't plug, it will be too dangerous for me to get this treatment and that will be that. If I can get this radioembolism, it is an outpatient surgery that I would be awake for, and they would do half the liver first; give me 4 weeks to recover; and do the other half a month later. Each time I would be radioactive about 10 days and have to sleep alone and forego any close prolonged contact with anyone for 10 days. Other than some fatigue there are no other side effects; I should feel fine. Then I have to wait a minimum of 4 months before I can have an accurate PET scan because the radiation throws PET scans off.
Our fallback if I have a shunt to the lungs that cannot be plugged up, is that I could try chemoembolism instead of the radioembolism. This is chemo inserted directly into the artery and into the liver. It combines crazy-concentrated chemo with the blood-starving embolism qualities of the procedure, killing the cancer 2 ways. Chemo-embolism requires an overnight hospitalization to manage the expected accompanying pain and nausea. But chemoembolism is only being looked at if 'shunts' preclude me getting the radioembolism.
Now let's see how hard my insurance pushes back here. They have had 2 people with other cancers turned down flat by their insurance for radioembolism, even after appeal. Then we'll have to decide if we dare spend $200,000 of our OWN money on this. I don't think I could let my family do that for something palliative, not curative. & this IS a palliative thing; I still will have cancer when it's done. Just less of it. I won't even be in remission. But statistically radioembolism DOUBLES your life expectancy of time left on this beautiful earth. I'll keep you posted. Meanwhile I start tamoxifen/megace tomorrow to hold me during all of this.
Sorry for the LONG POST.
You always teach up so much with everything you share with us. What a great session you had today. 2 hours of learning a new plan with someone who is excited about it as you are. I presume you will have to wait for insurance approval before the would insert any plugs into the shunts.
I am glad you have a fallback plan, too. I have heard of people having chemo embolism before. I know of people have had external pumps that pumped chemo into the liver. also.
I wonder how long it takes to get insurance approval, and how long an appeal process takes. I have the tamoxifin and megace program keeps you at a standstill while you wait.
What a big decision to decide if you want to spend your own money if insurance denies your request. I don't envy you at all for possibly having to make that decision. I hope the insurace will approve it for you. Keep the postive attitude, and continue to enjoy each day. In peace and caring.0 -
A long AND informative postlindaprocopio said:GREAT meeting with the Interventional radiologist today!
The interventional radiologist took 2 hours with us today, almost as excited about doing this with me as I am about doing it with him. A resident sat in on the consultation, and a P.A. also spent a lot of time talking with us about it. They have only ever done ONE other radioembolism treatment for a gynecologic cancer patient (a cervical cancer patient whose metastisis was predominently in her liver), but they all believe they are on to something very promising as uterine cancer responds so well to radiation. But it really hit home how 'cuttimg edge' this is to try it for uterine cancer and I am proud and will be thrilled if I can be their guinea pig. Now if they can just sell the idea to my insurance provider!!
I learned a lot about the treatment and how the liver works. Did you know that cancer tumors create their own 'shunts' to get the blood they need? That is why I will have to have a 'dry run' of the procedure where they will shoot contrast up there to see if my cancer has built any shunts from my liver to my lungs or elsewhere. They are already planning )as a part of the treatment) on inserting plugs to any shunts in my liver that go down towards my bowel or lower regions. But if a shunt goes up into my lungs, they will need to shoot a different material in there to try and plug up that pathway to the lungs. If there is a shunt to the lungs that they can't plug, it will be too dangerous for me to get this treatment and that will be that. If I can get this radioembolism, it is an outpatient surgery that I would be awake for, and they would do half the liver first; give me 4 weeks to recover; and do the other half a month later. Each time I would be radioactive about 10 days and have to sleep alone and forego any close prolonged contact with anyone for 10 days. Other than some fatigue there are no other side effects; I should feel fine. Then I have to wait a minimum of 4 months before I can have an accurate PET scan because the radiation throws PET scans off.
Our fallback if I have a shunt to the lungs that cannot be plugged up, is that I could try chemoembolism instead of the radioembolism. This is chemo inserted directly into the artery and into the liver. It combines crazy-concentrated chemo with the blood-starving embolism qualities of the procedure, killing the cancer 2 ways. Chemo-embolism requires an overnight hospitalization to manage the expected accompanying pain and nausea. But chemoembolism is only being looked at if 'shunts' preclude me getting the radioembolism.
Now let's see how hard my insurance pushes back here. They have had 2 people with other cancers turned down flat by their insurance for radioembolism, even after appeal. Then we'll have to decide if we dare spend $200,000 of our OWN money on this. I don't think I could let my family do that for something palliative, not curative. & this IS a palliative thing; I still will have cancer when it's done. Just less of it. I won't even be in remission. But statistically radioembolism DOUBLES your life expectancy of time left on this beautiful earth. I'll keep you posted. Meanwhile I start tamoxifen/megace tomorrow to hold me during all of this.
Sorry for the LONG POST.
A long AND informative post Linda! I do hope the approval comes thru for you. Even though you would not be able to have a PET scan can you get a CT to monitor effectiveness of the treatment? I do hope the insurance process can move along quickly so at least you can make plans. The waiting games can be hard but you are feeling well so just keep on living large!
Annie0 -
Very informative postlindaprocopio said:GREAT meeting with the Interventional radiologist today!
The interventional radiologist took 2 hours with us today, almost as excited about doing this with me as I am about doing it with him. A resident sat in on the consultation, and a P.A. also spent a lot of time talking with us about it. They have only ever done ONE other radioembolism treatment for a gynecologic cancer patient (a cervical cancer patient whose metastisis was predominently in her liver), but they all believe they are on to something very promising as uterine cancer responds so well to radiation. But it really hit home how 'cuttimg edge' this is to try it for uterine cancer and I am proud and will be thrilled if I can be their guinea pig. Now if they can just sell the idea to my insurance provider!!
I learned a lot about the treatment and how the liver works. Did you know that cancer tumors create their own 'shunts' to get the blood they need? That is why I will have to have a 'dry run' of the procedure where they will shoot contrast up there to see if my cancer has built any shunts from my liver to my lungs or elsewhere. They are already planning )as a part of the treatment) on inserting plugs to any shunts in my liver that go down towards my bowel or lower regions. But if a shunt goes up into my lungs, they will need to shoot a different material in there to try and plug up that pathway to the lungs. If there is a shunt to the lungs that they can't plug, it will be too dangerous for me to get this treatment and that will be that. If I can get this radioembolism, it is an outpatient surgery that I would be awake for, and they would do half the liver first; give me 4 weeks to recover; and do the other half a month later. Each time I would be radioactive about 10 days and have to sleep alone and forego any close prolonged contact with anyone for 10 days. Other than some fatigue there are no other side effects; I should feel fine. Then I have to wait a minimum of 4 months before I can have an accurate PET scan because the radiation throws PET scans off.
Our fallback if I have a shunt to the lungs that cannot be plugged up, is that I could try chemoembolism instead of the radioembolism. This is chemo inserted directly into the artery and into the liver. It combines crazy-concentrated chemo with the blood-starving embolism qualities of the procedure, killing the cancer 2 ways. Chemo-embolism requires an overnight hospitalization to manage the expected accompanying pain and nausea. But chemoembolism is only being looked at if 'shunts' preclude me getting the radioembolism.
Now let's see how hard my insurance pushes back here. They have had 2 people with other cancers turned down flat by their insurance for radioembolism, even after appeal. Then we'll have to decide if we dare spend $200,000 of our OWN money on this. I don't think I could let my family do that for something palliative, not curative. & this IS a palliative thing; I still will have cancer when it's done. Just less of it. I won't even be in remission. But statistically radioembolism DOUBLES your life expectancy of time left on this beautiful earth. I'll keep you posted. Meanwhile I start tamoxifen/megace tomorrow to hold me during all of this.
Sorry for the LONG POST.
Don't apologise for the length of the post - it was full of useful, cutting edge information.
I have everything crossed that your insurers will pay and that they can close all the shunts in order to try this new procedure. But, as Ro says, there is also a back up plan, which is always good news.
You are always so positive Linda. I admire you so much - as I've said before - you are a beacon of light to us all.
Kindest wishes
Hellie0 -
Your pursue of treatmentHellieC said:Very informative post
Don't apologise for the length of the post - it was full of useful, cutting edge information.
I have everything crossed that your insurers will pay and that they can close all the shunts in order to try this new procedure. But, as Ro says, there is also a back up plan, which is always good news.
You are always so positive Linda. I admire you so much - as I've said before - you are a beacon of light to us all.
Kindest wishes
Hellie
Linda your post is fascinating. I didn't know of all of these treatments. I get angry when insurance companies dictate to us what we can or cannot do. I did HIPEC knowing it just gave me more time. I believe it did; my peritoneum had so much cancer.
Wow and then this is an outpatient procedure. I wonder why it is so expensive. Because it is new?
I admire all the research you do. Also, if this does not work out I found a neat clinical trial in Bethesda - all paid for by NIH. If you want more info you can email me at home or just call. It involves Parp inhibitors and carbo. It is a phase I. I believe I too have a very agressive serous cancer. Actually, I know so from the last biopsy. I think that's why we have to consider other options.
Godspeed!
Diane0 -
Thanks LindaSongflower said:Your pursue of treatment
Linda your post is fascinating. I didn't know of all of these treatments. I get angry when insurance companies dictate to us what we can or cannot do. I did HIPEC knowing it just gave me more time. I believe it did; my peritoneum had so much cancer.
Wow and then this is an outpatient procedure. I wonder why it is so expensive. Because it is new?
I admire all the research you do. Also, if this does not work out I found a neat clinical trial in Bethesda - all paid for by NIH. If you want more info you can email me at home or just call. It involves Parp inhibitors and carbo. It is a phase I. I believe I too have a very agressive serous cancer. Actually, I know so from the last biopsy. I think that's why we have to consider other options.
Godspeed!
Diane
Your posts are like a class in cancer treatment - very informative. Thanks for taking the time to be so thorough and share what you are learning with all of us.
FIGHT (I know you will) with your insurance. If it is imminently life threatening they have a small window of time to make decision. Hopefully your good docs will grease the wheels and make it happen.
My prayers are with you on all of this. Mary Ann0 -
Linda:lindaprocopio said:GREAT meeting with the Interventional radiologist today!
The interventional radiologist took 2 hours with us today, almost as excited about doing this with me as I am about doing it with him. A resident sat in on the consultation, and a P.A. also spent a lot of time talking with us about it. They have only ever done ONE other radioembolism treatment for a gynecologic cancer patient (a cervical cancer patient whose metastisis was predominently in her liver), but they all believe they are on to something very promising as uterine cancer responds so well to radiation. But it really hit home how 'cuttimg edge' this is to try it for uterine cancer and I am proud and will be thrilled if I can be their guinea pig. Now if they can just sell the idea to my insurance provider!!
I learned a lot about the treatment and how the liver works. Did you know that cancer tumors create their own 'shunts' to get the blood they need? That is why I will have to have a 'dry run' of the procedure where they will shoot contrast up there to see if my cancer has built any shunts from my liver to my lungs or elsewhere. They are already planning )as a part of the treatment) on inserting plugs to any shunts in my liver that go down towards my bowel or lower regions. But if a shunt goes up into my lungs, they will need to shoot a different material in there to try and plug up that pathway to the lungs. If there is a shunt to the lungs that they can't plug, it will be too dangerous for me to get this treatment and that will be that. If I can get this radioembolism, it is an outpatient surgery that I would be awake for, and they would do half the liver first; give me 4 weeks to recover; and do the other half a month later. Each time I would be radioactive about 10 days and have to sleep alone and forego any close prolonged contact with anyone for 10 days. Other than some fatigue there are no other side effects; I should feel fine. Then I have to wait a minimum of 4 months before I can have an accurate PET scan because the radiation throws PET scans off.
Our fallback if I have a shunt to the lungs that cannot be plugged up, is that I could try chemoembolism instead of the radioembolism. This is chemo inserted directly into the artery and into the liver. It combines crazy-concentrated chemo with the blood-starving embolism qualities of the procedure, killing the cancer 2 ways. Chemo-embolism requires an overnight hospitalization to manage the expected accompanying pain and nausea. But chemoembolism is only being looked at if 'shunts' preclude me getting the radioembolism.
Now let's see how hard my insurance pushes back here. They have had 2 people with other cancers turned down flat by their insurance for radioembolism, even after appeal. Then we'll have to decide if we dare spend $200,000 of our OWN money on this. I don't think I could let my family do that for something palliative, not curative. & this IS a palliative thing; I still will have cancer when it's done. Just less of it. I won't even be in remission. But statistically radioembolism DOUBLES your life expectancy of time left on this beautiful earth. I'll keep you posted. Meanwhile I start tamoxifen/megace tomorrow to hold me during all of this.
Sorry for the LONG POST.
Thank you for your
Linda:
Thank you for your long post. It is because of your posts that we here are informed of so many new treatment strategies.
I pray that your insurance company does not turn this treatment down.
My posts are short because everything I want to say gets jumbled up in my head. So read my thoughts!
My best to you!
Kathy0 -
Lindalindaprocopio said:GREAT meeting with the Interventional radiologist today!
The interventional radiologist took 2 hours with us today, almost as excited about doing this with me as I am about doing it with him. A resident sat in on the consultation, and a P.A. also spent a lot of time talking with us about it. They have only ever done ONE other radioembolism treatment for a gynecologic cancer patient (a cervical cancer patient whose metastisis was predominently in her liver), but they all believe they are on to something very promising as uterine cancer responds so well to radiation. But it really hit home how 'cuttimg edge' this is to try it for uterine cancer and I am proud and will be thrilled if I can be their guinea pig. Now if they can just sell the idea to my insurance provider!!
I learned a lot about the treatment and how the liver works. Did you know that cancer tumors create their own 'shunts' to get the blood they need? That is why I will have to have a 'dry run' of the procedure where they will shoot contrast up there to see if my cancer has built any shunts from my liver to my lungs or elsewhere. They are already planning )as a part of the treatment) on inserting plugs to any shunts in my liver that go down towards my bowel or lower regions. But if a shunt goes up into my lungs, they will need to shoot a different material in there to try and plug up that pathway to the lungs. If there is a shunt to the lungs that they can't plug, it will be too dangerous for me to get this treatment and that will be that. If I can get this radioembolism, it is an outpatient surgery that I would be awake for, and they would do half the liver first; give me 4 weeks to recover; and do the other half a month later. Each time I would be radioactive about 10 days and have to sleep alone and forego any close prolonged contact with anyone for 10 days. Other than some fatigue there are no other side effects; I should feel fine. Then I have to wait a minimum of 4 months before I can have an accurate PET scan because the radiation throws PET scans off.
Our fallback if I have a shunt to the lungs that cannot be plugged up, is that I could try chemoembolism instead of the radioembolism. This is chemo inserted directly into the artery and into the liver. It combines crazy-concentrated chemo with the blood-starving embolism qualities of the procedure, killing the cancer 2 ways. Chemo-embolism requires an overnight hospitalization to manage the expected accompanying pain and nausea. But chemoembolism is only being looked at if 'shunts' preclude me getting the radioembolism.
Now let's see how hard my insurance pushes back here. They have had 2 people with other cancers turned down flat by their insurance for radioembolism, even after appeal. Then we'll have to decide if we dare spend $200,000 of our OWN money on this. I don't think I could let my family do that for something palliative, not curative. & this IS a palliative thing; I still will have cancer when it's done. Just less of it. I won't even be in remission. But statistically radioembolism DOUBLES your life expectancy of time left on this beautiful earth. I'll keep you posted. Meanwhile I start tamoxifen/megace tomorrow to hold me during all of this.
Sorry for the LONG POST.
Great meeting....sending prayers this gets approved.
Laurie0 -
Wow, the things these doctors can do...lindaprocopio said:GREAT meeting with the Interventional radiologist today!
The interventional radiologist took 2 hours with us today, almost as excited about doing this with me as I am about doing it with him. A resident sat in on the consultation, and a P.A. also spent a lot of time talking with us about it. They have only ever done ONE other radioembolism treatment for a gynecologic cancer patient (a cervical cancer patient whose metastisis was predominently in her liver), but they all believe they are on to something very promising as uterine cancer responds so well to radiation. But it really hit home how 'cuttimg edge' this is to try it for uterine cancer and I am proud and will be thrilled if I can be their guinea pig. Now if they can just sell the idea to my insurance provider!!
I learned a lot about the treatment and how the liver works. Did you know that cancer tumors create their own 'shunts' to get the blood they need? That is why I will have to have a 'dry run' of the procedure where they will shoot contrast up there to see if my cancer has built any shunts from my liver to my lungs or elsewhere. They are already planning )as a part of the treatment) on inserting plugs to any shunts in my liver that go down towards my bowel or lower regions. But if a shunt goes up into my lungs, they will need to shoot a different material in there to try and plug up that pathway to the lungs. If there is a shunt to the lungs that they can't plug, it will be too dangerous for me to get this treatment and that will be that. If I can get this radioembolism, it is an outpatient surgery that I would be awake for, and they would do half the liver first; give me 4 weeks to recover; and do the other half a month later. Each time I would be radioactive about 10 days and have to sleep alone and forego any close prolonged contact with anyone for 10 days. Other than some fatigue there are no other side effects; I should feel fine. Then I have to wait a minimum of 4 months before I can have an accurate PET scan because the radiation throws PET scans off.
Our fallback if I have a shunt to the lungs that cannot be plugged up, is that I could try chemoembolism instead of the radioembolism. This is chemo inserted directly into the artery and into the liver. It combines crazy-concentrated chemo with the blood-starving embolism qualities of the procedure, killing the cancer 2 ways. Chemo-embolism requires an overnight hospitalization to manage the expected accompanying pain and nausea. But chemoembolism is only being looked at if 'shunts' preclude me getting the radioembolism.
Now let's see how hard my insurance pushes back here. They have had 2 people with other cancers turned down flat by their insurance for radioembolism, even after appeal. Then we'll have to decide if we dare spend $200,000 of our OWN money on this. I don't think I could let my family do that for something palliative, not curative. & this IS a palliative thing; I still will have cancer when it's done. Just less of it. I won't even be in remission. But statistically radioembolism DOUBLES your life expectancy of time left on this beautiful earth. I'll keep you posted. Meanwhile I start tamoxifen/megace tomorrow to hold me during all of this.
Sorry for the LONG POST.
Linda,
Great news. This all sounds spectacularly cutting edge.
As far as the potential cost/insurance issue, if the doctors are anxious for guinea pigs, is there any possibility they will absorb some of the costs? Or can pair the embolization onto some other radiation procedure that would cover the routine items like hospital stay, pain meds? (sometimes getting things covered is just a matter of good coding.) But if the treatment is only covered for neoendocrine cancers, it seems that the teaching hospitals have to do some of the legwork in proving it's viable for all the other cancers that can met to the liver too.
And while it is such a hassle to even consider the legal avenues that come after an insurance denial, the 9th Circuit recently upped the ante insofar as the burden on insurers to prove something is not medically necessary when a patient just went through with a procedure and then was denied. (And it's about time.)
http://www.passionforsubro.com/erisa/denial-of-experimental-treatment-reversed-in-erisa-case/#high_1
Each one of these legal victories is a small step forward for the treatment of every underfunded and understudied disease.
Sincerest wishes that somebody, somewhere, somehow makes one of these embolization treatments work for you.0 -
RADIOEMBOLISM APPROVED !!! My insurance came through!denyingarea said:Wow, the things these doctors can do...
Linda,
Great news. This all sounds spectacularly cutting edge.
As far as the potential cost/insurance issue, if the doctors are anxious for guinea pigs, is there any possibility they will absorb some of the costs? Or can pair the embolization onto some other radiation procedure that would cover the routine items like hospital stay, pain meds? (sometimes getting things covered is just a matter of good coding.) But if the treatment is only covered for neoendocrine cancers, it seems that the teaching hospitals have to do some of the legwork in proving it's viable for all the other cancers that can met to the liver too.
And while it is such a hassle to even consider the legal avenues that come after an insurance denial, the 9th Circuit recently upped the ante insofar as the burden on insurers to prove something is not medically necessary when a patient just went through with a procedure and then was denied. (And it's about time.)
http://www.passionforsubro.com/erisa/denial-of-experimental-treatment-reversed-in-erisa-case/#high_1
Each one of these legal victories is a small step forward for the treatment of every underfunded and understudied disease.
Sincerest wishes that somebody, somewhere, somehow makes one of these embolization treatments work for you.
I just got off the phone with my insurance company, and they told me that a letter was mailed yesterday saying Assurant would consider this procedure for payment under my insurance. I asked, "does that mean I was approved to have this done?", and she said YES!!! So I phoned the Interventional Radiologist and they said as soon as they get the official letter, we can schedule the 'mapping' that will determine whether I am anatomically a candidate for the radioembolism. I'm very excited & hopeful & we're going out to celebrate this weekend!!
0 -
radioembolismlindaprocopio said:RADIOEMBOLISM APPROVED !!! My insurance came through!
I just got off the phone with my insurance company, and they told me that a letter was mailed yesterday saying Assurant would consider this procedure for payment under my insurance. I asked, "does that mean I was approved to have this done?", and she said YES!!! So I phoned the Interventional Radiologist and they said as soon as they get the official letter, we can schedule the 'mapping' that will determine whether I am anatomically a candidate for the radioembolism. I'm very excited & hopeful & we're going out to celebrate this weekend!!
Linda,
GREAT NEWS!!!!! May everything fall into place and go well for you!!! You are a true Warrior!
Debbie
0
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