Opdivo Psuedoprogression

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rhominator
rhominator Member Posts: 233 Member
edited April 2017 in Kidney Cancer #1

Just an FYI. 'Got my first scans back recently after being on Opdivo for three months. Mixed results. Some things disappeared; new things appeared.  Most alarming was a new 1.7cm lesion in my spine, yet no clinical symptoms.  At present it's being attributed to psuedoprogression.  Spooky nonetheless.  'Continuing with Opdivo--with a watchful eye on the spine lesions.

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  • Abunai
    Abunai Member Posts: 173 Member
    #2
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    Opdivo

    Glad to hear you are continuing with the Opdivo.

    I've been in a clinical study for two months which pairs a trial drug with Opdivo. I just found out today that the trial sponsor is going to begin paying for the Opdivo as well as the trial drug (my insurance company had been paying for the Opdivo).

    I had scans, on April 5th, ordered by my neurosurgeon, not the trial doctors, and he found some tumors (most noteworthy: one on my sacrum) had grown, slightly, in size, and had the potential for causing problems with my sciatic nerve. I had to tell the trial doctors today that I believe I'm starting to experience clinical symptoms similar to sciatica. I'm going in for another MRI tomorrow.

    I am supposed to have my "official scans" on May 8th to determine if my current treatment is working. I hope these slightly larger tumors are a case of pseudoprogression, and that the Opdivo and trial drug are working (Votrient didn't work for me at all), and that I can continue the Opdivo treatment.

  • rhominator
    rhominator Member Posts: 233 Member
    edited April 2017 #3
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    Abunai said:

    Opdivo

    Glad to hear you are continuing with the Opdivo.

    I've been in a clinical study for two months which pairs a trial drug with Opdivo. I just found out today that the trial sponsor is going to begin paying for the Opdivo as well as the trial drug (my insurance company had been paying for the Opdivo).

    I had scans, on April 5th, ordered by my neurosurgeon, not the trial doctors, and he found some tumors (most noteworthy: one on my sacrum) had grown, slightly, in size, and had the potential for causing problems with my sciatic nerve. I had to tell the trial doctors today that I believe I'm starting to experience clinical symptoms similar to sciatica. I'm going in for another MRI tomorrow.

    I am supposed to have my "official scans" on May 8th to determine if my current treatment is working. I hope these slightly larger tumors are a case of pseudoprogression, and that the Opdivo and trial drug are working (Votrient didn't work for me at all), and that I can continue the Opdivo treatment.

    Thanks for the udpate

    I'm following your posts very closely now given our similarity with Opdivo and spinal lesions. 

    Sorry to hear of the sciatica symtoms.  I hope the MRI and future scans go well.

  • rhominator
    rhominator Member Posts: 233 Member
    #4
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    6 month scans

    I just got my 6-month scan results. PET/CT imagery shows improvements in my lymph nodes but progression in several bone metastases. However, I am manifesting no clinical systems, i.e., no pain from the bone metastases. This is good: under the current treatment, clinical symptoms (or lack thereof) trump the scan results. But, nonetheless, my actual condition is difficult to assess.  I will be scanned again in six weeks. Meanwhile I'm exercising and hiking and feel great!

  • rhominator
    rhominator Member Posts: 233 Member
    #5
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    Zap 'em!

    I'm staged to get a course of radiation treatments for the spinal bone mets.

    I'm singing, "Radioactive, radioactive..."

  • foxhd
    foxhd Member Posts: 3,181 Member
    #6
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    You know

    it's done wonders for me on my bone mets. You will be happy.

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    edited July 2017 #7
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    Sorry for what you are going

    Sorry for what you are going through, always seems so challenging, BUT with some rewards!

    And I love your attitude! Keep it up! We're here for you all the way!

    Hugs, Jan

  • rhominator
    rhominator Member Posts: 233 Member
    #8
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    I hiked 12.5 miles yesterday

    I hiked 12.5 miles yesterday to spite the cancer Tongue Out and enjoy God's creation.

  • hardo718
    hardo718 Member Posts: 853 Member
    #9
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    Good for you!!

    Can't keep a good man down.  Or in some instances, woman.  My husband was kind enough to get a hitch put on my new car so I can start biking again.  I'm so looking forward to it.  I was biking 10 miles a day but when we got the new car I could no longer haul my bike to the trails.  I'm doing the happy dance now!

    Donna~

  • penitent
    penitent Member Posts: 79
    edited August 2017 #10
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    Pseudoprogression

    I keep seeing this term, but even after looking it up in the med journals I don't fully understand it.  Can anyone give me an easily explainable definition?

  • foxhd
    foxhd Member Posts: 3,181 Member
    edited August 2017 #11
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    Pseudoprogression.

    I'll try. Pseudoprogression is when it appears that your tumors are increasing in both number and size when scanned. In reality it is usually an inflammatory response with localized swelling that makes your tumors appear to be larger. This is seen when recieving immunotherapy treatments. i.e. nivolumab. So it looks like your cancer is growing not being attacked by the treatment. Many effective treatments have been stopped early before this was understood. Now a couple rounds of scans are needed to be more certain.

    I had done well with nivo and looked forward to rechallenging it a year and a half ago. My scans showed a lot of growth but I insisted on continuing because I had complete confidence it was pseudoprogression. I was wrong. In 6 months I had about 20 new tumors. Thankfully cabo has corrected that.

  • rhominator
    rhominator Member Posts: 233 Member
    #12
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    A layman's definition:

    The initial PET/CT scans after starting an immunotherapy, like Opdivo, may show signs of cancer progression, which can actually be a mass of white blood cells attacking the cancer. I.e., a false positive reading.  I understand it can be difficult to distinguish between the two.

     

    [edit] It looks like Fox responded while I was typing my message.  His explanation is better.

  • penitent
    penitent Member Posts: 79
    edited August 2017 #13
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    Thanks much for the explanations

    It is much clearer now.  The scans for my SIL came back on Friday.  No visible progression or new tumors and the met on the aorta that was treated with SBRT has shrunk to pretty much nothingness.  However, there is a 4cm shadow in his lung that the onc has determined is scar tissue from the radiation.  The problem is that it is obscuring a good view of that section of lung right now to see if there are any other mets there.  Hopefully it will shrink over time as it heals.  In the meantime, still on bi-weekly Opdivo.

  • Qt34167
    Qt34167 Member Posts: 41
    edited August 2017 #14
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    lesion on Spine

    So sorry to heaar about lesion on spine.  I can no longer do Sutent and starting Opdivo.   My tumors are in my lungs and were in my liver.  They radio emblized my liver which cause many problems.  I am on my 5th biliry duct to drain bile out of my liver.  I have severe Jaundice.  If this does not work my last option is an external drain from my liver into a bag.  probably permanent.  Not sure about that.

     

    Funny how cancer isn't killing me, but my liver where they killed all my tumors

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