Tumors in liver
Comments
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Please suggest that your friend look into radioembolism.
I also have mets to the liver, and my cancer there progressed while I was taking a series of different chemo drugs; nothing seemed to work. I finally got a referral from my chemo oncologist to see a top liver specialist who referred me to a radiation interventionist. On June 1st I had "SirSpheres radioembolism" of the right half of my liver, and will have the left half done when I get back from the beach at the end of July. You can Google it and read all about it, and there is a blog (www.beatlivertumors.org) of people who have had this procedure done for mets to the liver from a wide variety of cancers. Radioembolism is not yet FDA-approved in the USA, but is used widely in the rest of the world. I was pretty sick for 4 or 5 days after the procedure, and radioactive and had to sstay 10' away from everyone for 10 days following the treatment. But within a week, I was back 100% and have felt great since. My insurance approved it after a 4 week battle. I won't know if it worked for at least 3 more months, but it is a ray of hope for those with chemo-resistant liver mets.0 -
Radioembolismlindaprocopio said:Please suggest that your friend look into radioembolism.
I also have mets to the liver, and my cancer there progressed while I was taking a series of different chemo drugs; nothing seemed to work. I finally got a referral from my chemo oncologist to see a top liver specialist who referred me to a radiation interventionist. On June 1st I had "SirSpheres radioembolism" of the right half of my liver, and will have the left half done when I get back from the beach at the end of July. You can Google it and read all about it, and there is a blog (www.beatlivertumors.org) of people who have had this procedure done for mets to the liver from a wide variety of cancers. Radioembolism is not yet FDA-approved in the USA, but is used widely in the rest of the world. I was pretty sick for 4 or 5 days after the procedure, and radioactive and had to sstay 10' away from everyone for 10 days following the treatment. But within a week, I was back 100% and have felt great since. My insurance approved it after a 4 week battle. I won't know if it worked for at least 3 more months, but it is a ray of hope for those with chemo-resistant liver mets.
Thank you so much for the information. I have passed it on. I really appreciate you sharing your experience and I pray for a good outcome for you. If it is not FDA approved, where did you have the procedure done?
Chris0 -
I was able to get it done at Geisinger, where I get my chemo.cfont11 said:Radioembolism
Thank you so much for the information. I have passed it on. I really appreciate you sharing your experience and I pray for a good outcome for you. If it is not FDA approved, where did you have the procedure done?
Chris
On the SIR-Spheres website, there is a page that lists all of the hospitals and clinics that have been trained and approved to do the SIR-Spheres radioembolism. I live in PA, and in my state I could have had the treatment done at Fox Chase, Geisinger, or UPMC. It can be a battle to get your insurance to approve paying for it, but an aggressive certification team usually can make that happen. And radioembolism may not even be the best answer for your friend, but a radiation interventionist can also discuss radiofrequency ablation & other liver-specific treatment options.
I have an initial CT scan tomorrow for an early look at what's happened in my liver since my June 1 radioembolism. It will really be another 3 months before a really relaible scan will show whether this was successful for me. But they like to see what they can see before they do the other half of the liver, & I plan to have the other side done in late July/early August. I hate scan days.0 -
Just an encouraging update: my preliminary CT-scan results....lindaprocopio said:I was able to get it done at Geisinger, where I get my chemo.
On the SIR-Spheres website, there is a page that lists all of the hospitals and clinics that have been trained and approved to do the SIR-Spheres radioembolism. I live in PA, and in my state I could have had the treatment done at Fox Chase, Geisinger, or UPMC. It can be a battle to get your insurance to approve paying for it, but an aggressive certification team usually can make that happen. And radioembolism may not even be the best answer for your friend, but a radiation interventionist can also discuss radiofrequency ablation & other liver-specific treatment options.
I have an initial CT scan tomorrow for an early look at what's happened in my liver since my June 1 radioembolism. It will really be another 3 months before a really relaible scan will show whether this was successful for me. But they like to see what they can see before they do the other half of the liver, & I plan to have the other side done in late July/early August. I hate scan days.
I just wanted to add a note to this thread. I had labs and a CT-scan today to get a preliminary idea if the radioembolism was successful. Although I haven't yet received the official results from the radiologist, the surgeon who did the procedure said that it looks as if the right side of the liver they did June 1st is "improved" and the much smaller left side we have yet to do looks "stable". I will know more once he really gets a chance to study my scans in depth, but all early indicators show that radioembolism worked where chemo did not.
I have cancer mets in a couple of areas of my lymph system outside my liver that we have had to ignore so that I could focus on my liver mets that seemed so determined to kill me. Again, these are just "on first glance" scan results, but I was told that my lungs look clear and everything else looks stable. I have been taking a combination of oral tamoxifen and megace for the past 11 weeks, so maybe that is what is holding me stable.
When I get more official news, I will post it if it seems like something worth knowing in making a decision on radioembolism.
As an aside, my blood labs were a little low: white blood count & red blood count both below normal range. I didn't expect that. But it explains why the hot & humid weather the past week has been making me so short of breath with any exertion. I was afraid it was disease progression or a blood clot in my lungs or something serious. Funny how your mind works when you have a scan coming up! I feel better already now that I know it's just mild anemia!0 -
very encouraging resultslindaprocopio said:Just an encouraging update: my preliminary CT-scan results....
I just wanted to add a note to this thread. I had labs and a CT-scan today to get a preliminary idea if the radioembolism was successful. Although I haven't yet received the official results from the radiologist, the surgeon who did the procedure said that it looks as if the right side of the liver they did June 1st is "improved" and the much smaller left side we have yet to do looks "stable". I will know more once he really gets a chance to study my scans in depth, but all early indicators show that radioembolism worked where chemo did not.
I have cancer mets in a couple of areas of my lymph system outside my liver that we have had to ignore so that I could focus on my liver mets that seemed so determined to kill me. Again, these are just "on first glance" scan results, but I was told that my lungs look clear and everything else looks stable. I have been taking a combination of oral tamoxifen and megace for the past 11 weeks, so maybe that is what is holding me stable.
When I get more official news, I will post it if it seems like something worth knowing in making a decision on radioembolism.
As an aside, my blood labs were a little low: white blood count & red blood count both below normal range. I didn't expect that. But it explains why the hot & humid weather the past week has been making me so short of breath with any exertion. I was afraid it was disease progression or a blood clot in my lungs or something serious. Funny how your mind works when you have a scan coming up! I feel better already now that I know it's just mild anemia!
way to go.. love those words... "improved" and "stable"!! The hot and humid weather does make it harder when your blood counts are low. You are such a warrior!!!!
(((HUGS))) Maria0 -
love to hear thisMwee said:very encouraging results
way to go.. love those words... "improved" and "stable"!! The hot and humid weather does make it harder when your blood counts are low. You are such a warrior!!!!
(((HUGS))) Maria
you deserve some good news and I am thrilled your results have improved!! Keep up the good work..val0 -
another bit of good news: CA125 dropped 4686 points!poopergirl14052 said:love to hear this
you deserve some good news and I am thrilled your results have improved!! Keep up the good work..val
I just checked online to get my CA125 lab results from yesterday’s blood draw. My CA125 is still a horrific 3768, but that means it’s dropped 4686 points since my last blood labs done just before the radioembolism on June 1st. No one is sure how the radioactivity affects CA125, but since this is GOOD news, I will take it as an indicator that the treatment was effective in reducing the amount of cancer in my liver. That may or may not be true, but I always believe in good news when I get it.0 -
Linda: I think the radiationlindaprocopio said:another bit of good news: CA125 dropped 4686 points!
I just checked online to get my CA125 lab results from yesterday’s blood draw. My CA125 is still a horrific 3768, but that means it’s dropped 4686 points since my last blood labs done just before the radioembolism on June 1st. No one is sure how the radioactivity affects CA125, but since this is GOOD news, I will take it as an indicator that the treatment was effective in reducing the amount of cancer in my liver. That may or may not be true, but I always believe in good news when I get it.
Linda: I think the radiation could have an effect on your blood cells. See what the doctor says about this.
You must be so relieved to get some good news at last. I am hoping the good news continues for you.
(((hugs)))
LQ0 -
great newslindaprocopio said:another bit of good news: CA125 dropped 4686 points!
I just checked online to get my CA125 lab results from yesterday’s blood draw. My CA125 is still a horrific 3768, but that means it’s dropped 4686 points since my last blood labs done just before the radioembolism on June 1st. No one is sure how the radioactivity affects CA125, but since this is GOOD news, I will take it as an indicator that the treatment was effective in reducing the amount of cancer in my liver. That may or may not be true, but I always believe in good news when I get it.
This sounds like really great news to me!
Glad everything is going so well!!0 -
sounds awesom
This sounds like great news Linda.. your nos. have dropped by more than half... that's got to be a good thing..
Hugs,
Cindy0 -
Y90 spheres radioembolismlindaprocopio said:another bit of good news: CA125 dropped 4686 points!
I just checked online to get my CA125 lab results from yesterday’s blood draw. My CA125 is still a horrific 3768, but that means it’s dropped 4686 points since my last blood labs done just before the radioembolism on June 1st. No one is sure how the radioactivity affects CA125, but since this is GOOD news, I will take it as an indicator that the treatment was effective in reducing the amount of cancer in my liver. That may or may not be true, but I always believe in good news when I get it.
HI, I am so happy to see your postings. Your results must make you feel there is hope, they do me.
I have lots of tumors in my liver (breast cancer) and had the radioembolism procedure on June 29th, 2011. I live in Hawaii but traveled to Long Beach Memorial Hospital for the procedure under Dr. Gaswami and Dr. Gamie.
My insurance company paid for the procedures which which shocked me.
I personally have felt terrible with extremely low energy since the procedure. I think some of it is my fault for not taking the anti-acid pills consistently.
I have had challenge with what foods to eat. I am going to get my first CT scan next week. Have you had to rest more or change your eating?
I know we are all different but after tons of Chemo then this procedure to be a 100% so quickly makes me wonder what is your secret.
Best to you!0 -
Waves: you need to drink 64 oz. water daily & EAT!Cindy Bear said:sounds awesom
This sounds like great news Linda.. your nos. have dropped by more than half... that's got to be a good thing..
Hugs,
Cindy
Before my radiation interventionist agreed to do the radioembolism on me, he made me promise that no matter how nauseated or uncomfortable eating was for me, I must open my mouth and shovel in healthy food. & he insisted that I commit to drinking 64 oz. of non-caffeine, non-alcohol fluids DAILY. His exact words were, "EAT; or your cancer will eat you." I am a VERY compliant patient; any self-care that my doctors tell me to do, I do, always have. I also made myself get some exercise each day, even though right after the radioembolism when I was still radioactive, I had to sit down every 50 yards or so. But each day I got stronger and could do more.
I felt 100% back to my normal self within a week of my radioembolism. But I do find myself tired by early evening, which is not like me, and I sleep 10 hours a night. The Physician's Assistant told my DIL (who works in CT scan) yesterday that the results shown on my initial CT liver-scan were "even better than they dared hope for." I wouldn't hesitate to do this more than once if my liver mets grow back. I feel like I bought myself some significant time.0 -
Lindalindaprocopio said:Waves: you need to drink 64 oz. water daily & EAT!
Before my radiation interventionist agreed to do the radioembolism on me, he made me promise that no matter how nauseated or uncomfortable eating was for me, I must open my mouth and shovel in healthy food. & he insisted that I commit to drinking 64 oz. of non-caffeine, non-alcohol fluids DAILY. His exact words were, "EAT; or your cancer will eat you." I am a VERY compliant patient; any self-care that my doctors tell me to do, I do, always have. I also made myself get some exercise each day, even though right after the radioembolism when I was still radioactive, I had to sit down every 50 yards or so. But each day I got stronger and could do more.
I felt 100% back to my normal self within a week of my radioembolism. But I do find myself tired by early evening, which is not like me, and I sleep 10 hours a night. The Physician's Assistant told my DIL (who works in CT scan) yesterday that the results shown on my initial CT liver-scan were "even better than they dared hope for." I wouldn't hesitate to do this more than once if my liver mets grow back. I feel like I bought myself some significant time.
I am praying that your results will be great. You have such a positive attitude and are working really hard to keep your health. I feel so proud of my teal sisters and gain strength to live each day to the fullest even if it's spent cleaning out my closet and drawers as I am doing today.
Karen0 -
Radioembolismlindaprocopio said:Waves: you need to drink 64 oz. water daily & EAT!
Before my radiation interventionist agreed to do the radioembolism on me, he made me promise that no matter how nauseated or uncomfortable eating was for me, I must open my mouth and shovel in healthy food. & he insisted that I commit to drinking 64 oz. of non-caffeine, non-alcohol fluids DAILY. His exact words were, "EAT; or your cancer will eat you." I am a VERY compliant patient; any self-care that my doctors tell me to do, I do, always have. I also made myself get some exercise each day, even though right after the radioembolism when I was still radioactive, I had to sit down every 50 yards or so. But each day I got stronger and could do more.
I felt 100% back to my normal self within a week of my radioembolism. But I do find myself tired by early evening, which is not like me, and I sleep 10 hours a night. The Physician's Assistant told my DIL (who works in CT scan) yesterday that the results shown on my initial CT liver-scan were "even better than they dared hope for." I wouldn't hesitate to do this more than once if my liver mets grow back. I feel like I bought myself some significant time.
Linda,
It is great to hear your wonderful news! You are certainly a strong woman and a fighter. It is good to know about all the options that are out there for treatment. Thanks again for sharing. My prayers are with you.0 -
Thanks for Sharing!lindaprocopio said:Waves: you need to drink 64 oz. water daily & EAT!
Before my radiation interventionist agreed to do the radioembolism on me, he made me promise that no matter how nauseated or uncomfortable eating was for me, I must open my mouth and shovel in healthy food. & he insisted that I commit to drinking 64 oz. of non-caffeine, non-alcohol fluids DAILY. His exact words were, "EAT; or your cancer will eat you." I am a VERY compliant patient; any self-care that my doctors tell me to do, I do, always have. I also made myself get some exercise each day, even though right after the radioembolism when I was still radioactive, I had to sit down every 50 yards or so. But each day I got stronger and could do more.
I felt 100% back to my normal self within a week of my radioembolism. But I do find myself tired by early evening, which is not like me, and I sleep 10 hours a night. The Physician's Assistant told my DIL (who works in CT scan) yesterday that the results shown on my initial CT liver-scan were "even better than they dared hope for." I wouldn't hesitate to do this more than once if my liver mets grow back. I feel like I bought myself some significant time.
Hi Linda,
I just wanted to thank you for sharing your experience with radioembolism. In June, after 7 years in remission, my mom has tumors throughout her abdominal and pelvic regions, her spleen has essentially been replaced by tumor and most concerning are the tumors in her liver that are too close to the major blood vessels to be operable. My mom remains ever optimistic and has a strong will to live. Of course, the first line of defense is chemo, but I appreciated your posting about radioembolism because it gave us a 'plan b' to explore if the chemo is not successful in shrinking the tumors.
Thanks again for sharing! I'm sure there are many more people who read and utilize the information that you've posted than those that reply.
I'm so glad to read that you're ca125 has done down. That fantasic news!
All the best,
Kristen0
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