CT/PET scan results & the beginnings of a new plan: radioembolism
Comments
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VERY good newslindaprocopio 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!!
I'm so glad that your insurance company is doing the right thing, and my wish for you is that you continue to feel excited and hopeful. May everything be easy for you from this point on and return you to NED.
Best wishes,
Jill0 -
Woo Hoo!Rewriter said:VERY good news
I'm so glad that your insurance company is doing the right thing, and my wish for you is that you continue to feel excited and hopeful. May everything be easy for you from this point on and return you to NED.
Best wishes,
Jill
This morning while walking my dog I was wondering when you'd hear about this. I'm sooooo happy for you. In my little pea brain this means it was approved because your onc is convinced it will help and s/he said/wrote the right words to the insurance company. Next week will bring more good news as the RO gets the official thumbs up and a plan put in motion.
I hope everything goes smoothly for you as you travel through this next phase of your journey and come out the other end NED.
Suzanne0 -
Amazing!lindaprocopio 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!!
Dear Linda,
This is wonderful news! I am so happy. I have a really strong feeling that this treatment will work. It gives hope to us all. enjoy your celebrations!
Cler0 -
Great News, Linda!lindaprocopio 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!!
Your
Great News, Linda!
Your insurance co keeps coming through for you to give you best shots for controlling this disease. Your continuing good health willagain be an asset keeping you battle ready in great fighting form. You go girl !!!
Annie0 -
Yippee!lindaprocopio 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!!
I am sooooo happy for you, Linda! Sending you hugs to have a wonderful weekend!
Kathy0 -
Linda what greast news.lindaprocopio 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!!
I was so happy to read your latest post. I am so happy the radioembolism was approved for you. I hope all goes well with the radiation onocologist. I hope the mapping goes well, too. You remain in my thoughts and prayers. Enjoy your weekend. Hope you continue to feel well. In peace and caring.0 -
WONDERFUL newslindaprocopio 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!!
What wonderful news that this new reatment option is opening up for you. Yet again you are a pathfinder for us.
You're in my thoughts and prayers
Helen0 -
Great News!!!HellieC said:WONDERFUL news
What wonderful news that this new reatment option is opening up for you. Yet again you are a pathfinder for us.
You're in my thoughts and prayers
Helen
Linda, you are an inspiration. Your posts give me hope and courage. Sending you prayers and my wishes for a positive outcome for this procedure. Norma0 -
Yipeeeee! WooHoo! Yabba Dabba Do!norma2 said:Great News!!!
Linda, you are an inspiration. Your posts give me hope and courage. Sending you prayers and my wishes for a positive outcome for this procedure. Norma
I need good news today. This is big. This is hope. Sending hugs and love.
Diane0 -
Linda----this is happy happy newsSongflower said:Yipeeeee! WooHoo! Yabba Dabba Do!
I need good news today. This is big. This is hope. Sending hugs and love.
Diane
Linda,
I have been watching the boards looking for an update from you.
This is wonderful news!
Enjoy your celebration this week-end!
Keep us posted. Can't wait for the next update.
Cindy0 -
Your procedure and Tamoxifenhopeful girl 1 said:Linda----this is happy happy news
Linda,
I have been watching the boards looking for an update from you.
This is wonderful news!
Enjoy your celebration this week-end!
Keep us posted. Can't wait for the next update.
Cindy
Linda,
Tamoxifen often has to be discontinued 10 days before a surgical procedure. Tamoxifen increases clotting. I'd ask my Doctor before the procedure.
Don't feel bad about killing the cancer even tough it is palliative. So was my hipec and it did give me time to orchestrate the wedding. And even now, there is no cancer in the lower part of the body; they are thinking hipec should be done early. I suspected that over a year ago. You can do this.
Love,
Diane0 -
Tomorrow is my 'mapping' to see if I can really have this.Pat51 said:Great News...Happy For You!
I am glad to hear that you got approval from your insurance company for the procedure...finally an insurance company willing to do the right thing!! I hope that this is the beginning of your journey to NED. Keep us informed.
Pat
Tommorrow I go in for the 'mapping', a sort of dry run of the radioembolism, but without the radioactive material. They will shoot some kind of dye up there and watch how it circulates through my liver and look for any shunts (openings) the cancer has created that lead outside the liver and measure for the coils they will need to use to plug those up. If any of the shunts are to large to safely plug up, then I am out for the radioembolism & can't have it, so tomorrow is a BIG DAY for me.
The manufacturer of the radioactive beads offered a CD on the radioembolism procedure on their website, so I emailed them to see if there was a CD on the mapping procedure. I got an very interesting email back from the SIR-Spheres plant in Australia, and we had a brief email exchange. What I wanted to share with you is this.
He said "Your question about clinical trials of SIR-Spheres in the treatment of liver metastases from uterine or ovarian cancer is a good question. In US the FDA has approved SIR-Spheres for the treatment of liver metastases from primary bowel cancer. However, in Europe, UK and other countries, SIR-Spheres are approved for the treatment of any type of liver cancer. This includes gynaecological cancers. We are certainly aiming to broaden the FDA approved indication of SIR-Spheres beyond just bowel cancer liver metastases. However, we have to complete a 2 large clinical trials in primary liver cancer (known as HCC) before we can move on to other forms of liver cancer such as ovarian and uterine liver metastases. I’m sure we will get there eventually."
So it is comforting to know that this procedure is being done in other parts of the world routinely for uterine cancers that have metastacized to the liver. So if you find yourself in this position (God forbid!) don't be too afraid to give it a try.0 -
Linda Good Luck tomorrowlindaprocopio said:Tomorrow is my 'mapping' to see if I can really have this.
Tommorrow I go in for the 'mapping', a sort of dry run of the radioembolism, but without the radioactive material. They will shoot some kind of dye up there and watch how it circulates through my liver and look for any shunts (openings) the cancer has created that lead outside the liver and measure for the coils they will need to use to plug those up. If any of the shunts are to large to safely plug up, then I am out for the radioembolism & can't have it, so tomorrow is a BIG DAY for me.
The manufacturer of the radioactive beads offered a CD on the radioembolism procedure on their website, so I emailed them to see if there was a CD on the mapping procedure. I got an very interesting email back from the SIR-Spheres plant in Australia, and we had a brief email exchange. What I wanted to share with you is this.
He said "Your question about clinical trials of SIR-Spheres in the treatment of liver metastases from uterine or ovarian cancer is a good question. In US the FDA has approved SIR-Spheres for the treatment of liver metastases from primary bowel cancer. However, in Europe, UK and other countries, SIR-Spheres are approved for the treatment of any type of liver cancer. This includes gynaecological cancers. We are certainly aiming to broaden the FDA approved indication of SIR-Spheres beyond just bowel cancer liver metastases. However, we have to complete a 2 large clinical trials in primary liver cancer (known as HCC) before we can move on to other forms of liver cancer such as ovarian and uterine liver metastases. I’m sure we will get there eventually."
So it is comforting to know that this procedure is being done in other parts of the world routinely for uterine cancers that have metastacized to the liver. So if you find yourself in this position (God forbid!) don't be too afraid to give it a try.
I will be thinking and praying for you tomorrow as I sit in my chemo chair for day 2 of my 5th cycle. I hope everything works out that you will be a candidate for the radioembolism.
As usual you have an interesting note about clinical trials for gynecological cancers and go to the liver. Thank you for the information. You always teach us so much.
Sending you cyber hugs, and will be cyber holding your hand as you go through your mapping. In peace and caring.0 -
Hope mapping is finding alllindaprocopio said:Tomorrow is my 'mapping' to see if I can really have this.
Tommorrow I go in for the 'mapping', a sort of dry run of the radioembolism, but without the radioactive material. They will shoot some kind of dye up there and watch how it circulates through my liver and look for any shunts (openings) the cancer has created that lead outside the liver and measure for the coils they will need to use to plug those up. If any of the shunts are to large to safely plug up, then I am out for the radioembolism & can't have it, so tomorrow is a BIG DAY for me.
The manufacturer of the radioactive beads offered a CD on the radioembolism procedure on their website, so I emailed them to see if there was a CD on the mapping procedure. I got an very interesting email back from the SIR-Spheres plant in Australia, and we had a brief email exchange. What I wanted to share with you is this.
He said "Your question about clinical trials of SIR-Spheres in the treatment of liver metastases from uterine or ovarian cancer is a good question. In US the FDA has approved SIR-Spheres for the treatment of liver metastases from primary bowel cancer. However, in Europe, UK and other countries, SIR-Spheres are approved for the treatment of any type of liver cancer. This includes gynaecological cancers. We are certainly aiming to broaden the FDA approved indication of SIR-Spheres beyond just bowel cancer liver metastases. However, we have to complete a 2 large clinical trials in primary liver cancer (known as HCC) before we can move on to other forms of liver cancer such as ovarian and uterine liver metastases. I’m sure we will get there eventually."
So it is comforting to know that this procedure is being done in other parts of the world routinely for uterine cancers that have metastacized to the liver. So if you find yourself in this position (God forbid!) don't be too afraid to give it a try.
Hope mapping is finding all the right places and no danger zones!
Annie0 -
Just got home from 'mapping': I'm a GO for June 1st!!upsofloating said:Hope mapping is finding all
Hope mapping is finding all the right places and no danger zones!
Annie
I'll write a longer post tomorrow when I'm not so beat. But I wanted to let you know that I had my "Mapping" today (hepatic angiography), and I AM an anatomic candidate for the radioembolism and have an appointment June 1st to do the right side of my liver!! I was in surgery about 2 hours this morning and they plugged up 10 small shunts with various coils to keep the radioactive beads I will get on June 1st enclosed within the liver. At the close of the surgery, they add a radioactive contrast and then I had to have a 40 minute special type of scan that follows the path of that radioactive contrast through my liver and to see what % leaks out of the liver. Acceptable for the treatment is 20% leakage; mine was only 7%. I had to stay in recovery for 5 hours flat in my back to be sure that the artery incision by my groin was closed.
It was a FASCINATING procedure, for which I was awake the whole time, and I have other todbits to share about the process. But I need to stretch out now. I'll post again tomorrow. Just wanted to say "YIPPEE!!"0 -
Linda, I say :Yippee" toolindaprocopio said:Just got home from 'mapping': I'm a GO for June 1st!!
I'll write a longer post tomorrow when I'm not so beat. But I wanted to let you know that I had my "Mapping" today (hepatic angiography), and I AM an anatomic candidate for the radioembolism and have an appointment June 1st to do the right side of my liver!! I was in surgery about 2 hours this morning and they plugged up 10 small shunts with various coils to keep the radioactive beads I will get on June 1st enclosed within the liver. At the close of the surgery, they add a radioactive contrast and then I had to have a 40 minute special type of scan that follows the path of that radioactive contrast through my liver and to see what % leaks out of the liver. Acceptable for the treatment is 20% leakage; mine was only 7%. I had to stay in recovery for 5 hours flat in my back to be sure that the artery incision by my groin was closed.
It was a FASCINATING procedure, for which I was awake the whole time, and I have other todbits to share about the process. But I need to stretch out now. I'll post again tomorrow. Just wanted to say "YIPPEE!!"
I am so happy that everything went well today and you are anotomically a candidate. That is such wonderful news. Your procedure sound very much like a cardiac catheterization, but they went to the liver instead of the heart. I think the laying flat on your back for 5 hours would be very hard to do, too. I hardly ever sleep on my back.
Putting in 10 shunts sounds like a lot. I guess that is because they want to keep the radioembolism beads only on the right side of the liver. Glad you had acceptable leakage for the treatment. Everything sound great, and you have a date ----- June 1st. I am so happy for you and wish you very much success with the treatment. I can't wait to hear more of your post. Celebrate each day until then. In peace and caring.0 -
Linda, how did it go?lindaprocopio said:Tomorrow is my 'mapping' to see if I can really have this.
Tommorrow I go in for the 'mapping', a sort of dry run of the radioembolism, but without the radioactive material. They will shoot some kind of dye up there and watch how it circulates through my liver and look for any shunts (openings) the cancer has created that lead outside the liver and measure for the coils they will need to use to plug those up. If any of the shunts are to large to safely plug up, then I am out for the radioembolism & can't have it, so tomorrow is a BIG DAY for me.
The manufacturer of the radioactive beads offered a CD on the radioembolism procedure on their website, so I emailed them to see if there was a CD on the mapping procedure. I got an very interesting email back from the SIR-Spheres plant in Australia, and we had a brief email exchange. What I wanted to share with you is this.
He said "Your question about clinical trials of SIR-Spheres in the treatment of liver metastases from uterine or ovarian cancer is a good question. In US the FDA has approved SIR-Spheres for the treatment of liver metastases from primary bowel cancer. However, in Europe, UK and other countries, SIR-Spheres are approved for the treatment of any type of liver cancer. This includes gynaecological cancers. We are certainly aiming to broaden the FDA approved indication of SIR-Spheres beyond just bowel cancer liver metastases. However, we have to complete a 2 large clinical trials in primary liver cancer (known as HCC) before we can move on to other forms of liver cancer such as ovarian and uterine liver metastases. I’m sure we will get there eventually."
So it is comforting to know that this procedure is being done in other parts of the world routinely for uterine cancers that have metastacized to the liver. So if you find yourself in this position (God forbid!) don't be too afraid to give it a try.
By now you would have had the mapping...
How did it go?
Laurie0 -
more detail on my 'mapping' procedure yesterdayTiggersDoBounce said:Linda, how did it go?
By now you would have had the mapping...
How did it go?
Laurie
I had my mapping YESTERDAY, with an appointment for the SIR-Spheres for the right side of my liver on June 1st. The 2-hour mapping surgery was fascinating, as I was wide awake for the whole thing. I asked them to ‘go light’ on the stuff they give you to relax you (as I am a pin weight and usually am out cold if they give me any kind of sedative at all.) You need to stay awake so that you can hold your breath when they need to have 100% stillness. They use a local anesthetic to numb the area by your groin that they cut to insert the catheter (a narrow flexible tube) into your artery and then up into your liver. I had 10 coils/torpedoes/vortexes (ranging in size from 2 mm to 6 mm) inserted into various shunts they uncovered during my mapping, and each time I was asked to hold my breath as they inserted a wire with the little coil on it. The only way I knew the wires were moving in and out is that sometimes I could feel the interventional radiologist’s hand moving against my thigh as he threaded it in and out of the catheter tube already in there.
You can watch on the monitor and see what’s going on in your body, although I admit that I couldn’t really see all that good with my contacts out! HA! It was fascinating to see all the hundreds of ‘real time’ decisions the interventional radiologist had to make as he followed the path of my circulation on the monitor. Throughout the procedure he was calling out to his assistants for what size and type of plugs he wanted attached to a wire next; and the assistants had to choose the right one from a HUGE assortment of possibilities, over and over. Fifteen minutes before he estimated he wanted to close, he sent someone to get ‘nuclear medicine’ and someone else joined the team at the very end to administer some sort of radioactive contrast. I have a Power Port for my chemo, so I assume it was administered through that tubing, but I couldn’t feel that. I couldn’t really feel ANY pain or discomfort throughout.
The long time in Recovery was a surprise for me: 4 to 5 hours lying flat on your back. Someone came in as soon as I got in Recovery and applied a LOT of pressure on the incision and held it there for what seemed like 20 minutes, but it may have been less. This is how they close the tiny wound, and it worked. The drugs I got were so light that I wasn’t groggy enough to sleep and can’t sleep flat on my back anyway. I’d brought a book, but they wouldn’t let me raise my head to read or have a drink or take a leak or anything. Early in the recovery period hours, I was taken for a special scan that looks at where the radioactive contrast traveled outside the liver. Each position of the ‘camera’ took 10 minutes, for a total of 40 minutes, so a LONG scan time, but at least it gave me some break in the boring 5 hours of recovery! At this facility where I go, you have to have less than 20% of the contrast leak out of the liver to be considered a safe candidate for the SIRS-Spheres. I had only 7% leakage, and they seemed very happy with that. After 4 hours of lying flat I was slowing propped up in bed in increments and finally taken to a chair to sit for a half hour. As soon as I could, I walked to the bathroom and could see that I was fine, not at all shaky or wobbly. I ate a HUGE meal the second I got home, which made me a little uncomfortable for being such a piggy. But I was ravenous!
So I am writing this “the day after”. I feel fine, can’t even see ANY bruising at the incision site or anywhere else, at least not yet. I have to leave the bandage on at least another day and take it a little easy today. But by tomorrow I was okayed for normal activities. No side effects: bowels, appetite, digestion, sleeping, all normal already! I am thrilled to have this process underway!! I look on this as a fascinating adventure and a glimpse into the world of a surgeon.
I’m to start on a prescription Prilosec immediately and take it 45 days, so that means I’ll be taking Prilosec before AND after the SIR-Spheres, to keep stomach acid down as stomach acid is counter-productive for the SIR-Sheres. I was told that the day of the SIR-Spheres procedure I would start taking a prescription antibiotic for the next several weeks, and that I would be taking a steroid for 12 days following the insertion of the SIR-Spheres to combat fatigue and help with healing and nausea. I hate steroids because they make me sleepless, but they insisted steroids were important, and I will do what I must do!0 -
Linda thanks for more details of your Mappinglindaprocopio said:more detail on my 'mapping' procedure yesterday
I had my mapping YESTERDAY, with an appointment for the SIR-Spheres for the right side of my liver on June 1st. The 2-hour mapping surgery was fascinating, as I was wide awake for the whole thing. I asked them to ‘go light’ on the stuff they give you to relax you (as I am a pin weight and usually am out cold if they give me any kind of sedative at all.) You need to stay awake so that you can hold your breath when they need to have 100% stillness. They use a local anesthetic to numb the area by your groin that they cut to insert the catheter (a narrow flexible tube) into your artery and then up into your liver. I had 10 coils/torpedoes/vortexes (ranging in size from 2 mm to 6 mm) inserted into various shunts they uncovered during my mapping, and each time I was asked to hold my breath as they inserted a wire with the little coil on it. The only way I knew the wires were moving in and out is that sometimes I could feel the interventional radiologist’s hand moving against my thigh as he threaded it in and out of the catheter tube already in there.
You can watch on the monitor and see what’s going on in your body, although I admit that I couldn’t really see all that good with my contacts out! HA! It was fascinating to see all the hundreds of ‘real time’ decisions the interventional radiologist had to make as he followed the path of my circulation on the monitor. Throughout the procedure he was calling out to his assistants for what size and type of plugs he wanted attached to a wire next; and the assistants had to choose the right one from a HUGE assortment of possibilities, over and over. Fifteen minutes before he estimated he wanted to close, he sent someone to get ‘nuclear medicine’ and someone else joined the team at the very end to administer some sort of radioactive contrast. I have a Power Port for my chemo, so I assume it was administered through that tubing, but I couldn’t feel that. I couldn’t really feel ANY pain or discomfort throughout.
The long time in Recovery was a surprise for me: 4 to 5 hours lying flat on your back. Someone came in as soon as I got in Recovery and applied a LOT of pressure on the incision and held it there for what seemed like 20 minutes, but it may have been less. This is how they close the tiny wound, and it worked. The drugs I got were so light that I wasn’t groggy enough to sleep and can’t sleep flat on my back anyway. I’d brought a book, but they wouldn’t let me raise my head to read or have a drink or take a leak or anything. Early in the recovery period hours, I was taken for a special scan that looks at where the radioactive contrast traveled outside the liver. Each position of the ‘camera’ took 10 minutes, for a total of 40 minutes, so a LONG scan time, but at least it gave me some break in the boring 5 hours of recovery! At this facility where I go, you have to have less than 20% of the contrast leak out of the liver to be considered a safe candidate for the SIRS-Spheres. I had only 7% leakage, and they seemed very happy with that. After 4 hours of lying flat I was slowing propped up in bed in increments and finally taken to a chair to sit for a half hour. As soon as I could, I walked to the bathroom and could see that I was fine, not at all shaky or wobbly. I ate a HUGE meal the second I got home, which made me a little uncomfortable for being such a piggy. But I was ravenous!
So I am writing this “the day after”. I feel fine, can’t even see ANY bruising at the incision site or anywhere else, at least not yet. I have to leave the bandage on at least another day and take it a little easy today. But by tomorrow I was okayed for normal activities. No side effects: bowels, appetite, digestion, sleeping, all normal already! I am thrilled to have this process underway!! I look on this as a fascinating adventure and a glimpse into the world of a surgeon.
I’m to start on a prescription Prilosec immediately and take it 45 days, so that means I’ll be taking Prilosec before AND after the SIR-Spheres, to keep stomach acid down as stomach acid is counter-productive for the SIR-Sheres. I was told that the day of the SIR-Spheres procedure I would start taking a prescription antibiotic for the next several weeks, and that I would be taking a steroid for 12 days following the insertion of the SIR-Spheres to combat fatigue and help with healing and nausea. I hate steroids because they make me sleepless, but they insisted steroids were important, and I will do what I must do!
Thanks for sharing the information. Sounds like quite a procedure, with more to come. Wishing you the best for the rest of the procedure. Hoping all goes well for you. I can understand your feelings about the steroids. I don't like how they make me feel, and expecially when you come down off the steroids. I know you will "do what you must". You always do, you are so strong and such a warrior. In peace and caring.0
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