Theraspheres

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Marauders99
Marauders99 Member Posts: 22
edited March 2014 in Colorectal Cancer #1
Hello folks. I discovered this blog a few weeks ago and have been following from the sidelines until today. The info and support I found here has been inspirational. What a great group of people.

Like many of you I was an apparently health 44 year old cruising through life when I was diagnosed with Stage IV colorectal cancer 16 months ago. I too heard the "you have 6 months" speech. It was obviously devastating. Again, as asvised by many on this board I sought a second opinion, was offered some hope and have been traveling down the path ever since. That consisted of 6 months of FOLFOX with avastin, followed by 6 weeks of radiation on the primary colon tumor, then resection of the primary tumor with a temporary illeostomy for 3 months and then the illeostomy reversal. So all of these phases of treatment when like clockwork. A recent colonoscopy indicates my colon continues to be cancer free. No comes the hard part. The size and quantity of lesions on my liver preclude me from resection, Cyberknife and a number of other treatments. I am back on chemo, FOLFIRI w/Avastin this time due to the side effects of the FOLFOX. The FOLFIRI treatment hasn't been as effective as the FOLFOX, though my latest CT scan indicates things are stable in my liver. Well, my aggressive nature makes it hard for me to sit back and let things be "stable". I want to find something thats going to get things moving in the other direction. I understand that there currently is no cure for our condition but logic says if I can get the lesions knocked back a bit, it buys my more time. More time means more hope of other options. Being reactive rather than proactive seems to be the wrong approach at this point. That brings me to my question for the board. Who has experience with Therasphere treatment and what were your experiences? I've done quite a bit of searching on this treatment and indicators seem generally positive. I have specifically searched for negative outcomes as a result of Theraspheres and really haven't found anything. In addition, for those who have had the treatment, what is a reasonable expectation for an outcome? 20% reduction in tumor size and quantity? I have an angiogram scheduled for March 4th to determine if I am a candidate for the treatment.
Scott

Comments

  • sfmarie
    sfmarie Member Posts: 602
    #2
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    Scott
    While i have no personal experience, i did sit in on a consultation with an interventional radiologist (k not sure that is the correct title) with my sister whom was dx in 03/09 stage IV at age 39 with mets to liver and peritoneum. He was at Stanford and was an extremely bright and articulate doctor. While it may not "cure" your liver tumors, it could lead to resection. Personally, I think that alone is worth the procedure. From what we were told, there is little downtime (you do need to be sequestered from children and young animals a few days after due to the radiation). My sister did not have it done because her insurance denied her twice! (I am not sure where that stands now). You are doing the right thing and being your own advocate. Check out beatlivertumors.org. Suzanne Lindley is the expert on Theraspheres.
  • Marauders99
    Marauders99 Member Posts: 22
    #3
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    sfmarie said:

    Scott
    While i have no personal experience, i did sit in on a consultation with an interventional radiologist (k not sure that is the correct title) with my sister whom was dx in 03/09 stage IV at age 39 with mets to liver and peritoneum. He was at Stanford and was an extremely bright and articulate doctor. While it may not "cure" your liver tumors, it could lead to resection. Personally, I think that alone is worth the procedure. From what we were told, there is little downtime (you do need to be sequestered from children and young animals a few days after due to the radiation). My sister did not have it done because her insurance denied her twice! (I am not sure where that stands now). You are doing the right thing and being your own advocate. Check out beatlivertumors.org. Suzanne Lindley is the expert on Theraspheres.

    Insurance companies...that a
    Insurance companies...that a whole other topic. That is a shame that your sister has been denied. Its hard to understand some of the decisions that are made. I understand it is business but the human factor can't be discounted.

    Thanks for the insight and the lead on the website. I'll share my experiences with this treatment as they occur.

    Scott
  • geotina
    geotina Member Posts: 2,111 Member
    #4
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    Sir Spheres/Theraspheres
    One of our members "ittapp" (patti) very recently (in the last few weeks) had this procedure. You can send her a personal message or perhaps she will come on the board shortly. Patti is a real nice lady and I'm sure will fill you in on her experience if you send her a pm. Take care - Tina
  • geotina
    geotina Member Posts: 2,111 Member
    #5
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    HAI Pump
    If your mets are only to your liver, you may be eligible for the HAI pump. I think (not sure) that this is only offered at Sloan in New York. This is an internal pump type thing that delivers chemo directly to the liver, the oncologist will fill it with the drugs. Not sure how all this works but there are people on the board that have had great success with this pump. Throw it out there in a new discussion for information. Tina
  • clier
    clier Member Posts: 29
    #6
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    Theraspheres response
    Hi Scott. I'm Chris. Similar story: 45, healthy, sudden diagnosis Feb 09 of Stage IV Colon CA w/ mets to liver & lately to lungs. Had primary tumor resected Apr 09, then did 6 months FOLFOX w/ Avastin, after the first FOLFOX treatment, did the Sir Spheres (also Apr 09). Took a break from chemo in Oct, did another round of Sir Spheres Dec 09, then started up with FOLFURI w/o Erbitux or Avastin Jan 10. Going to do a third radiosphere treatment this month or next, while continuing on with FOLFURI. My liver tumors have responded a bit to the radiospheres: the first treatment was to the entire liver & the second treatment was to the left half only. The left half has experienced 5% reduction in size, about, and seems to be stable (no new tumors) but the right half has experienced about 5% growth in size and has new activity. In the last few months, it's gone into my lungs. I'm looking at clinical trials: J Hopkins, Sloan K, MD Anderson, Mayo.

    The guy that did my Sir Spheres was Dr. Charlie Nutting with RIA in Denver. Apparently, he does more of these than any other single doc in the US. He was excellent to work with. You can private message me if you like. I think it was worth doing, even if it just beat them back a bit. I'm almost a year out from my dx, which is better than some.

    chris
  • ittapp
    ittapp Member Posts: 383 Member
    #7
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    Hi Scott, my name is Patti
    Hi Scott, my name is Patti (ittap) and I did have the Sir Spheres around three weeks ago. They do one lobe at a time, I had the right lobe done first and will have the left lobe done this Thurs. It was an in and out procedure, I did have a good bit of pain for a day and fatigue for around three days. I will not know how it has worked until I have a scan a few weeks after the left lobe. The Interventional Radiologist told me to expect anywhere from 20% to 80% reduction. If you have any specific questions please pm me and I will be happy to reply. I know people that have had remarkable results in the size of the tumors from a liver directed therapy board. I will keep everyone updated about my next procedure as well as my results of scan. Patti
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #8
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    Hi, Scott
    Scott,

    I've not had the treatment, but I just want to welcome you to the board and tell you I'm wishing you well.

    *hugs*
    Gail
  • Marauders99
    Marauders99 Member Posts: 22
    #9
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    tootsie1 said:

    Hi, Scott
    Scott,

    I've not had the treatment, but I just want to welcome you to the board and tell you I'm wishing you well.

    *hugs*
    Gail

    Thank you all for your
    Thank you all for your responses. I wish I had found this board sooner! Family and friends have been a critical part of getting through this to this point. Having a place to talk with folks who are in the same situation is already paying dividends.
  • greg@dowlingdennis.net
    greg@dowlingdennis.net Member Posts: 1
    #10
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    Marauders99 said:

    Insurance companies...that a
    Insurance companies...that a whole other topic. That is a shame that your sister has been denied. Its hard to understand some of the decisions that are made. I understand it is business but the human factor can't be discounted.

    Thanks for the insight and the lead on the website. I'll share my experiences with this treatment as they occur.

    Scott

    TheraSphere and insurance coverage
    Insurance coverage has recently been expanded for TheraSphere and SIR Spheres: http://www.mds.nordion.com/therasphere/news/MDSN_TheraSphere_now_covered_ by_two_large_insurers.pdf

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