CT/PET scan results & the beginnings of a new plan: radioembolism

lindaprocopio
lindaprocopio Member Posts: 1,980 Member
Well, I had one of those long deep heart-to-heart meetings with my chemo oncologist yesterday to review Monday's CT/PET scan results and try and come up with a new strategy. The GOOD news of the scan is that the cancer hasn't invaded any new organs. The bad news is that my liver mets have really taken off in the last 2 months and it looks like at least half of my liver is involved now. It was hard to look at the scan pictures as we scrolled through, with the scan from 2 months ago, side-by-side, and see how much my cancer has grown in just 2 months even though I was on Avastin/Cytoxin all that time. We reviewed the chemo drugs I haven't had yet. Most of the approved endometrial cancer drugs left to me are older ones that they don't use unless they have to because they are too harsh or less effective; and the rest of my "targeted inhibitor" options are all super new and reletively unproven for uterine cancer. And we frankly agreed that my cancer appears to be completely chemo resistant. I made it clear that I want to have a nice summer and don't want to roll the dice on something that is going to make me sick and miserable and had less than a 30% chance of working.

I think we both know that it is time that I either throw in the towel and just enjoy the time I have left, or make a bold move. SOOOOOO, although my chemo oncologist has said, and said again yesterday, that radio frequency ablation was counter-indicated because I have more cancer outside of the liver, my husband kept pushing for it. So we got the liver surgeon and the interventional radiologist on speaker phone while we were there with my oncologist. Both opened my scan on their computers for the phone consultation. Both agreed that I had too wide-spread liver mets to do ablation. But the interventional radiologist (who is the surgeon that put in my port) said that he would see me next week to see if I am a candidate for radioembolism. He said that endometrial cancers are VERY receptive to radiation. They run a camera from your groin up an artery and into your liver first to see if you are a candidate for the procedure. If I am, he would do the embolism in 2 sessions 3 weeks apart. For the treatments, radioactive microspheres travel up that same path as the camera did and are shot into the liver. Microspheres is a relatively new treatment suitable for use even in patients with extensive liver involvement.  Radioactive spheres (SIR spheres or Therasphere) are injected into an artery in the liver. The spheres are like very tiny radioactive seeds. After they are injected through the liver artery, they travel into smaller arteries that feed the tumor.  Once the spheres are in the tumor, they give off radiation for about three days. The radioactivity causes damage to cancer cells with little damage to the healthy liver tissue.  It is a highly effective and well-tolerated regional treatment for extensive liver tumors.

Here's a link to learn about this exciting treatment:

http://www.sciencedaily.com/releases/2011/03/110328092409.htm?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed:+sciencedaily+(ScienceDaily:+Latest+Science+News)

Apparently, this is another treatment that insurance companies fight due to cost (about $80,000 a treatment), so insurance approval can take up to 60 days. Meanwhile, I am probably going to take a taxoxifen/megace pill regime, even though I am ER- and PR-, since a combo of the 2 of them has been known to work on a small percentage of ER-/PR- women for some unknown reason. & these pills are so easy to take; you still feel good and DOING something makes me feel better while I wait. My oncologist said that this interventional radiologist is VERY aggressive and does things he would personally never do, but also acknowledged that I am a very motivated patient, that over 90% of my overall cancer in my body is in my liver; and on that scale of overall health outside of cancer, I am still a "0" or a "1", which is the best rating.

I sooooo hope I am a candidate for this. This could buy me some time. Otherwise, with the speed my cancer is spreading, .......

Regardless, I plan to keep 'living large' and with joy each day! My grandkids are upstairs sleeping and we're coloring Easter eggs and going to see "Hop" this afternoon! Life is GOOD!
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Comments

  • Songflower
    Songflower Member Posts: 608
    Your New Plans
    It sounds encouraging. I so hope you get accepted. I did hipec because there were no options. They told me it probably would not cure this serous but I believe it did give me time. It was my decision and I decided to do it. We're with you all the way on this.

    Love,
    Diane
  • Songflower
    Songflower Member Posts: 608
    Your New Plans
    It sounds encouraging. I so hope you get accepted. I did hipec because there were no options. They told me it probably would not cure this serous but I believe it did give me time. It was my decision and I decided to do it. We're with you all the way on this.

    Love,
    Diane
  • Songflower
    Songflower Member Posts: 608
    Your New Plans
    It sounds encouraging. I so hope you get accepted. I did hipec because there were no options. They told me it probably would not cure this serous but I believe it did give me time. It was my decision and I decided to do it. We're with you all the way on this.

    Love,
    Diane
  • upsofloating
    upsofloating Member Posts: 466 Member
    The best news here is how
    The best news here is how well you continue to feel and that you continue to live life - probably fuller and larger than many with no health issues. A life well lived is the most!!! This treatment sounds quite innovative and I do hope the insurance will give you the opportunity to give it a go. You are truly an inspiration with the aggressiveness with which you pursue your options. Show that cancer that you are the boss!

    Have a wonderful Easter celebration with your family.
    Hugs!! Annie
  • Cindy Bear
    Cindy Bear Member Posts: 569
    Linda
    Just wanted to say thinking of you. Hope you and your family have a wonderful holiday weekend. I don't know anything about radioembolism but it sure sounds promising. Keeping my fingers crossed that this is a treatment option for you and that it works. You are amazing and it's amazing that you continue to feel so well and don't have any pain because I know one of the classic symptoms of liver mets is pain ..
    Hugs and prayers,
    Cindy
  • nempark
    nempark Member Posts: 681
    Hi Linda
    With such a powerful interventional radiologist there will be no need to throw in the towel at this time. Continue fighting and keep living large. You are a fighter and when the insurance approves of this new plan, you will have many more years to enjoy your grandkids and the rest of the family. I send you lots of hugs and best wishes.
  • maggie_wilson
    maggie_wilson Member Posts: 596
    dear linda
    i figured when you had something to say, we would be amongst the first to hear about it. i'll look up radioembolism, it does sound promising. we're so hoping you're a good candidate for it. what makes you a candidate? in any case, you'll be a good candidate, damn it! threre's not another option. there's no such thing as throwing in the towel at this point; you have not exhausted your options, and new ones come along all the time. we're still betting on you, dearest heart, and our care and love go with it. as the beloved phil oches sang:" cross your heart and hope to live."

    sisterhood and love,
    maggie
  • TiggersDoBounce
    TiggersDoBounce Member Posts: 408
    Happy Easter Linda
    Sending you the Hope from this season and am so thankful that you have been blessed with such a fighting spirit....I am praying this new treatment gets approved for you quickly and you can turn this ship around....

    Have fun with the grandkids...they are lucky to have you as are we!

    Laurie
  • sleem
    sleem Member Posts: 92
    good wishes
    Linda,
    Glad that you have a new plan and that the approval will come soon so you don't have to wait too long. Thank you for sharing with us.
  • Ro10
    Ro10 Member Posts: 1,561 Member
    Linda hoping the new plan is successful for you
    Linda I am so sorry to hear about the advancement of the liver mets. I hope this radioembolism is going to be an option for you. And I do hope it is going to work for you. I am anxious to read the site that you posted, as I don't know much about it either. I hope the new pills will slow things down for you.

    You are such a strong positive person. I am so glad you are "living large". Hope you have a Blessed Easter and make some more wonderful memories for the grandkids and the rest of your family. Glad to hear you are not having any pain, either. Continue to find joy in each day and enjoy Life is Good. In peace and caring.
  • hopeful girl 1
    hopeful girl 1 Member Posts: 454
    Ro10 said:

    Linda hoping the new plan is successful for you
    Linda I am so sorry to hear about the advancement of the liver mets. I hope this radioembolism is going to be an option for you. And I do hope it is going to work for you. I am anxious to read the site that you posted, as I don't know much about it either. I hope the new pills will slow things down for you.

    You are such a strong positive person. I am so glad you are "living large". Hope you have a Blessed Easter and make some more wonderful memories for the grandkids and the rest of your family. Glad to hear you are not having any pain, either. Continue to find joy in each day and enjoy Life is Good. In peace and caring.

    Linda,
    I am so glad the

    Linda,
    I am so glad the radiologist has offered this option. And the two pills while you wait sounds like a good plan as well.

    Stay strong and have faith.

    Lots of Hugs to you,
    Cindy
  • HellieC
    HellieC Member Posts: 524 Member
    Thinking of you, Linda
    You must have been through the mill and back these last few days/weeks. But in the face of everything, you still find time to tell us what is happening and describe new possibilities for treatment.
    I am hoping and praying that you will be a candidate for this new treatment and/or that the tamoxifen/megace have an effect.
    Keep fighting, Linda. They may keep changing the rules - but you're still in the game!
    With kindest wishes
    Helen
  • Kaleena
    Kaleena Member Posts: 2,088 Member
    Linda:
    Sending my best to

    Linda:

    Sending my best to you. Hoping you are a candidate for the radioembolism. Thanks for sharing all of the newest treatment.

    Kathy
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    Kaleena said:

    Linda:
    Sending my best to

    Linda:

    Sending my best to you. Hoping you are a candidate for the radioembolism. Thanks for sharing all of the newest treatment.

    Kathy

    Echo
    Dear Linda-
    I can only echo what others have said. The radioembolism does sound very interesting, encouraging, and it makes sense. I can't imagine you wouldn't be a candidate.

    Sending hugs, prayers, hopes and positive thoughts your way.

    Suzanne
  • Cler
    Cler Member Posts: 26
    Cyber Knife
    Hello Linda,

    Thinking of you this Easter. I hope the treatment option can go ahead.

    I'm really not sure if this relevant to your case, but I have read about a procedure called radio-surgery. It is done by a machine called a Cyber Knife. It does treat liver cancer so I thought I would mention it just incase it's a viable second option. It is extremely new here in the UK but possibly more common in the USA? It targets tumors very directly without harming surrounding healthy tissue.

    Here is a link : http://www.cyberknife.com/cyberknife-treatments/liver/how-used-treat-cancer.aspx (There is quite a lot of info on the web about it however. I have no idea if it is covered by insurance. Here in the UK it is not available on our healthcare system NHS currently I believe)

    I read it can also be used for tumors like those in lymph nodes which are in places that cannot be operated on with conventional surgery.

    Not sure if this is useful at all but just wanted to share just incase.

    Much love,
    Cler x
  • daisy366
    daisy366 Member Posts: 1,458 Member
    Cler said:

    Cyber Knife
    Hello Linda,

    Thinking of you this Easter. I hope the treatment option can go ahead.

    I'm really not sure if this relevant to your case, but I have read about a procedure called radio-surgery. It is done by a machine called a Cyber Knife. It does treat liver cancer so I thought I would mention it just incase it's a viable second option. It is extremely new here in the UK but possibly more common in the USA? It targets tumors very directly without harming surrounding healthy tissue.

    Here is a link : http://www.cyberknife.com/cyberknife-treatments/liver/how-used-treat-cancer.aspx (There is quite a lot of info on the web about it however. I have no idea if it is covered by insurance. Here in the UK it is not available on our healthcare system NHS currently I believe)

    I read it can also be used for tumors like those in lymph nodes which are in places that cannot be operated on with conventional surgery.

    Not sure if this is useful at all but just wanted to share just incase.

    Much love,
    Cler x

    Linda,
    Thanks for the update and the detailed info. I'm impressed with your healthcare team and their coordination of your case and the fact that you have docs that are risk takers. I think this is all on your side.

    Your attitude is superb! I know you will enjoy every day. Thanks for everything you are giving me!!

    Love, Mary Ann
  • lociee
    lociee Member Posts: 102
    daisy366 said:

    Linda,
    Thanks for the update and the detailed info. I'm impressed with your healthcare team and their coordination of your case and the fact that you have docs that are risk takers. I think this is all on your side.

    Your attitude is superb! I know you will enjoy every day. Thanks for everything you are giving me!!

    Love, Mary Ann

    seeding
    Hi Linda, your possible new treatment sounds a lot like the radioactive seeding they do for prostrate cancer - which is very successful! Seems like a good plan. Off you go again - one step at a time.
    Mia
  • barb55
    barb55 Member Posts: 91
    you
    Linda, Thank you for sharing. I so appreciate your balance of aggressively fighting this cancer and staying in the moment with your joy of life. I know it is not easy. Know that you are helping us all with this information. As always, I'm sending you love. Happy Easter.

    Barb
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    barb55 said:

    you
    Linda, Thank you for sharing. I so appreciate your balance of aggressively fighting this cancer and staying in the moment with your joy of life. I know it is not easy. Know that you are helping us all with this information. As always, I'm sending you love. Happy Easter.

    Barb

    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.
  • Ro10
    Ro10 Member Posts: 1,561 Member

    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 I have my fingers crossed that you will be a candidate
    I also have them crossed that insurance will cover this procedure for you. I am glad it was a positive meeting for you and you continue to have HOPE. I read the article that you posted. It was quite interesting.

    Good luck with your appointment with the interventional radiologist. In peace and caring.