Trial Update

firedude21
firedude21 Member Posts: 52
in Kidney Cancer #1

As some of you may know I am enrolled in a trial going on at UCLA in southern ca. I was randomized to the MPDL3280a + Avastin arm of the trial. Next Monday I will receive my third infusion of both drugs. So far the side effects have been minimal except for some severe shoulder pain that I went through for about two weeks. I do not know if this was "frozen shoulder" or something else but I needed pain pills to get through it. I also don't know if this was a side effect of the drugs or just old age kicking up. Other than that there has been the occasional bouts of diarrhea and a general soreness that seems to move from place to place. All in all, except for the shoulder pain everything has been very tolerable and I am happy to be in the trial. Sometime in the not to distant future I will be getting scanned to see what effect these drugs are having on my cancer. I am trying not to worry about that until the time comes. I will post occasional updates in hopes that something can be learned from my experience that my be helpful to others.

Wishing everyone the best for the New Year. 

 

firedude21

Comments

  • danbren2
    danbren2 Member Posts: 311
    #2
    Fingers Crossed!

    Firedude21,

         Wishing and praying your trial shows great results! Thanks for taking the plunge with a new trial that may be of significant help to us all!

                                         Prayers for good health!

                                          Brenda

  • Positive_Mental_Attitude
    Positive_Mental_Attitude Member Posts: 454
    #3
    firedude21, keep fighting the

    firedude21, keep fighting the good fight, and I hope the trial is a success.  Keep us updated. 

  • alice124
    alice124 Member Posts: 896 Member
    #4
    The shoulder pain is

    The shoulder pain is probably unrelated to the cancer, but you should make sure your oncologist knows about it before your next scan and expands your scan to include the shoulder area. John too started having severe shoulder pain a few months into his trial (Nivolumab/Votrient). He thought it may be a torn rotator cuff or perhaps frozen shoulder. His pain prompted his oncologist to expand his scan to include the neck area down rather than just the abdominal area. Those scans revealed mets in the shoulder and pelvic area. Hope that’s not the case, but better be safe than sorry.

     

    Wishing you super success in the trial.

  • angec
    angec Member Posts: 924 Member
    #5
    Have you ever had an injury

    Have you ever had an injury in that area? Sometimes those immune drugs can activate some pain in old injured areas.  Do get it scanned, it is probably nothing...

  • mjl66
    mjl66 Member Posts: 8
    #6
    shouldernpain

    My husband is in the same trial, Arm A as well.  His first scan is in February.  He's developed shoulder pain as well.  His side effects are the same as yours except he gets headaches.  They seem be be worse after the infusion and then subside.  They took him off the Avastin for the last 2 infusions because he was coughing up blood. He did have a wedge resection prior, and has 5 lung nodules.  His last urinalysis didn't show any blood cells in his urin for the first time since this mess started, I was ready to throw a party with that first bit of good news.

    I'm terrified and excited for the first scan.

    Good luck to you, and please keep us posted.

  • Positive_Mental_Attitude
    Positive_Mental_Attitude Member Posts: 454
    #7
    firedude, wondering how it is

    firedude, wondering how it is going for you.

  • firedude21
    firedude21 Member Posts: 52
    #8
    Positive_Mental_Attitude said:

    firedude, wondering how it is

    firedude, wondering how it is going for you.

    Trial update

    I recently completed my first scan after starting the MPDL3280a + Avastin trial in December of last year.  I was pretty happy with the results as the scan showed all mets to have remained stable or to have shrunk. The  met in my right hip is one that I was very concerned about and it had shrunk the most. It went from 33 x 28 mm to 23 x 23 mm. As for side effects they have been manageable. Two weeks after being infused I seem to get a pain showing up somewhere. The pain usually last for three to four days and I treat it with a heating pad and pain pills. I also deal with fatigue and diarrhea off and on. That's it for now. I will update after my next scan.

     

    Wishing the best to all -

    firedude21

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