derMaus Update from the Stage IV Club

derMaus
derMaus Member Posts: 558 Member
edited April 2018 in Uterine/Endometrial Cancer #1

I got my PET scan results today and, while not catastrophic, they certainly weren't what I was hoping for. Last year I developed mets to the retroperitoneal lymph nodes which were diminished, but not eliminated, by external radiation. In January I had had 5 rounds CyberKnife stereotactic radiation which seemed to have worked on the original problem, HOWEVER a bunch of new lymph nodes grew while that was going on. That's the bad news. The (nominally) good news is that it hasn't spread anywhere else, it's staying in the retroperitoneal nodes but, regrettably, expanding. 

My new oncologist has put me on Arimidex (aromatase inhibitor) and is exploring more CyberKnife for the new growth. He also noted that, since I'm now Stage IV with 'systemic' disease, he wants to take a "more proactive" approach and start me on immunotherapy soon. I was hoping to put that off for a few months but given the size and speed of the new growth I don't believe that will be an option. He also mentioned a couple of new drugs to possibly combine w/the immunotherapy, so at least he's thinking outside the box. More shall be revealed...

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Comments

  • Tamlen
    Tamlen Member Posts: 343 Member
    #2
    Oh damn

    You've been riding herd on those retroperitoneal lymph nodes, you'd think they'd start getting their act together.

    How do you feel about immunotherapy?

  • Jairoldi
    Jairoldi Member Posts: 221 Member
    #3
    derMaus

    It's so hard to know what to say when you know someone's heart has sunk a bit. I'm glad your doc is thinking outside of the box. 

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    #4
    Oncologist

    Glad your new oncologist is being aggressive. My oncologist admitted in my appointment this week that she operates on a real “evidence based “ basis.  The time for that for me was a couple years ago. If things get worse, I may be going elsewhere too because advanced cancer doesn’t care about “evidence based”. 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #5
    Dear derMaus, I am sorry to

    Dear derMaus, I am sorry to hear this.  I agree with CQ on having a new onc, because as we all know - there are GOOD docs and NOT SO GOOD docs.  Prayers for all the warriors, and my heart hurts for you, my friend.  Hugs

  • MrsBerry
    MrsBerry Member Posts: 102 Member
    edited April 2018 #6
    DerMaus, I am sorry to hear

    DerMaus, I am sorry to hear this news. Please know you are in my thoughts and I hold you in the light, along with all the strong and compassionate ladies here. 

  • SF73
    SF73 Member Posts: 317 Member
    #7
    Oh DerMaus, I am so sorry to

    Oh DerMaus, I am so sorry to hear this news of cancer spreading to new lymph nodes. But so glad that they are all retroperitoneal nodes . Remember you have immunotherapy in your back pocket which is shown to be effective for MSI-High tumors. Give your T-Cells a boost and they will handle the cancer cells!!! Why were you hoping to put off having immunotherapy a few months? From what I have read it does not sound like a therapy that is hard on the patient. Do you have some concerns? I really like your new oncologist. I cannot wait to hear all the great news from you two :)

     

  • MugsBugs
    MugsBugs Member Posts: 111 Member
    edited April 2018 #8
    Sorry to hear this!

    DerMaus - that sucks!  I wish there was a way to beat those cancer cells into submission and show them who the boss is!  Your doctor sounds awesome and hopefully between the two of you, you can kick the cancer to the curb!

    I will be praying and sending positive thoughts for you!

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    #9
    I'm so sorry, my friend.  I

    I'm so sorry, my friend.  I was hoping for a better outcome - like complete remission!!  But, it sounds like your doctor is 100% on your side and willing to try something new.  At least once a week, some new study comes out linking immunotherapy with another cancer-fighting drug.  True, they're not all for uterine cancer but look how many times they've found something that works for more than one cancer.

    Please let us know what they decide and how you're feeling.

    Love,

    Eldri

  • cmb
    cmb Member Posts: 1,001 Member
    #10
    Fingers crossed

    I'm keeping my fingers crossed that your new doctor and his different strategy brings you better results than you've had before.

  • evolo58
    evolo58 Member Posts: 293 Member
    #11
    These Type-II-like cancers

    These Type-II-like cancers (shakes head). 

    Hope your new onco can get rid of this beast for good ... finally.

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    #12
    Thinking of you

    Not what we want to hear for sure. Know you are in my thougts and I will follow how things go and am hoping the new treatment works wonders!!! Hang in there.

  • barnyardgal
    barnyardgal Member Posts: 272 Member
    #13
    I'm sorry. But that's great

    I'm sorry. But that's great that your doctor thinks outside of the box!

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    #14
    derMaus, So sorry to hear

    derMaus, So sorry to hear this news but thanks very much for sharing it with us. We all are stronger together and you are in my thoughts and prayers. I'm so glad you have a great doctor to work with. With so many new treatments becoming available, maybe, just maybe.... you can still hit NED. 

     

    CQ, I have been thinking about you too. Please get another doctor. You need someone that is open to alternatives! 

    Love and Hugs to you both.

    Cindi

     

  • linmk
    linmk Member Posts: 58
    #15
    Thanks for your update

    The bad effects of the first immunology drug used on me have been very mild compared to the first chemo I had. It's too early in the clinical trial for me to say if the drugs I'm taking are or will be helping. It's a sequential drug trial with two different drugs. I don't think that you should be afraid of having immunotherapy especially since you have MSI and immunotherapy is supposed to work better on that than for those of us who are MSS. Take care. Please keep us updated.

  • derMaus
    derMaus Member Posts: 558 Member
    #16
    linmk said:

    Thanks for your update

    The bad effects of the first immunology drug used on me have been very mild compared to the first chemo I had. It's too early in the clinical trial for me to say if the drugs I'm taking are or will be helping. It's a sequential drug trial with two different drugs. I don't think that you should be afraid of having immunotherapy especially since you have MSI and immunotherapy is supposed to work better on that than for those of us who are MSS. Take care. Please keep us updated.

    Thanks, linmk. It's always

    Thanks, linmk. It's always good to hear from those who are actually doing immunotherapy and I'm glad yours is well tolerated. 

  • Wannabeatit
    Wannabeatit Member Posts: 100 Member
    #17
    My thoughts are with you

    My thoughts are with you through the next leg of your journey. Please keep us updated. You and the others are so inspiring.

  • Wannabeatit
    Wannabeatit Member Posts: 100 Member
    #18
    My thoughts are with you

    My thoughts are with you through the next leg of your journey. Please keep us updated. You and the others are so inspiring.

  • DKK
    DKK Member Posts: 8
    #19
    Time for immunotherapy

    hi DerMaus, I’m reletively new here.  Was diagnosed one  Year ago as stage 4.  (Large aggressive vaginal tumor, lung nodules,  involved lymph nodes) I had 6 rounds of carbo platin and taxol, which worked great the first three months then did almost nothing the last three. Since I wanted my uterus surgicallly removed as the primary site, and since chemo didn’t shrink everything enough to do it, I went on 6 weeks of photon radiation, plus 3 rounds of brachytherapy.  They wait 4-6 weeks and then scan you.  At that time, I got both great news and horrendous news.  The great news was that the radiation killed the vaginal and uterine tumor (to the extent that you can be sure of these things). The horrendous part was that the cancer had metastasized to my liver and I had at least 10 tumors there.  I started on a clinical trial of durvalumab in January but ended up being kicked out of the program just before I was to have round 2 in Feb. (Long and not good story there)

    I went back to Mayo, and my doc set up a protocol of four rounds of chemo and immunotherapy (Pembro, a/k/a Keytruda) beginning in Feb.  i could only do one chemo for several months because my blood counts were so depressed.  But this past week was round 4, and I got the chemo plus the immunotherapy.  

    Compared to chemo, immunotherapy is a walk in the park.  Fatigue is its primary side effect (for me, anyway) but it’s manageable.  I wish I had started immunotherapy Right after or during radiation.  

    If you can -  please start immuno soon.  We are trying to shrink my liver tumors, two in particular, so that the immunotherapy has an easier time destroying the cancer cells.  It seems to make sense to start when the tumors are not really enlarged- it makes it easier to kill the cancer and  even the immune system needs a little help. 

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    #20
    derMaus

    I am so sorry to hear of your “systemic” disease....  The immunotherapy sounds like something that is possible. Just want you to know that I am keeping you in my prayers. Glad you found a new oncologist. 

    Lori 

  • derMaus
    derMaus Member Posts: 558 Member
    #21
    Thank you all

    Thank you all for the kind words and support. Where would I be without you? My concern about immunotherapy is that there's no end point in sight; I'll be on it "indefinitely" per the oncologist and, honestly, I'm just tired right now. I was diagnosed in November 2016 and have been in treatment of some type ever since. I've tolerated everything well, so I feel badly even saying that given how much many of our members have had bad experiences. I'm just exhausted and discouraged right now.

    After much thought, and reading the PET report closely (it was worse the second time around), I left a message for my onc that I was willing to start immunotherapy after I get back from a family wedding in late May. Hopefully the Arimidex will ride herd until then. Thanks again for your support and I'll keep you posted. Bless you all. B

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