Tumors were shrinking- now stable
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Tumors were shrinking- now stable

› Forums › Cutaneous Melanoma Community › Tumors were shrinking- now stable

  • Post
    • January 23, 2017 at 12:14 am
    Abbygx2589
    Participant

    Hi everyone,

    This is my first time posting but I read the boards here all the time. Thank you to every one who posts and supports each other. I am writing about my father who was diagnosed as stage IV last March (2016) after being diagnosed with stage 2 melanoma 17 years prior. We discovered it through a chest x-ray last winter , after his doctors had ignored his subcutaneous lumps for about a year, calling them lipomas. After all of the intial scans, we found out he had spots in his muscles, lung, pancreas, and multiple spots in the brain. He underwent cyberknife and began the ipi/nivo combo last spring in a clinical trial at BIMDC in Boston. He has shown response which is great and we are so thankful for- a 33% reduction in tumor size across the board- including the brain. After his last combo in July he became very sick and discovered he his pituitary had stopped producing cortisol so he now takes a low dose daily to make up for this. It is hard to believe he has stage IV cancer with how active and normal he seems. Anyway, finally, the reason I am writing is because his last scans were stable, the tumors did not shrink. This is the first time that nothing has shrunk. Has anyone had experience like this?  I am so afraid that the next scans will show growth. Have others experienced regrowth after shrinkage has turned to stability?

    Thank you all so much

Viewing 8 reply threads
  • Replies
      • January 23, 2017 at 2:50 am
      Spl25
      Participant

      This is not uncommon based on my doctor's description, and I don't think (anecdotally) it means that the next scan won't be better than the last. At the end of the day, most of the people who respond to PD-1 don't respond completely, but a lot of them stay stable for a long time after an initial response.  

        • February 15, 2017 at 8:46 pm
        Abbygx2589
        Participant

        They shrunk a little more this scan so you are right!

        thanks!

        • February 15, 2017 at 8:46 pm
        Abbygx2589
        Participant

        They shrunk a little more this scan so you are right!

        thanks!

        • February 15, 2017 at 8:46 pm
        Abbygx2589
        Participant

        They shrunk a little more this scan so you are right!

        thanks!

      • January 23, 2017 at 2:50 am
      Spl25
      Participant

      This is not uncommon based on my doctor's description, and I don't think (anecdotally) it means that the next scan won't be better than the last. At the end of the day, most of the people who respond to PD-1 don't respond completely, but a lot of them stay stable for a long time after an initial response.  

      • January 23, 2017 at 2:50 am
      Spl25
      Participant

      This is not uncommon based on my doctor's description, and I don't think (anecdotally) it means that the next scan won't be better than the last. At the end of the day, most of the people who respond to PD-1 don't respond completely, but a lot of them stay stable for a long time after an initial response.  

      • January 23, 2017 at 7:13 am
      debwray
      Participant

      Hi,

      Another scenario is that the remaining lumps or tumours can be filled with immunre cells and the melanoma cells have gone. Until you have evidence of bad shit going on, it is conforting to know there is another more positive explanation. The ride can be wild at  times..but sometimes knowing there may be a positive explanation helps us to deal with current uncertainties

      Good luck with your treatment

      Deb

        • January 23, 2017 at 6:13 pm
        snow white
        Participant

        Oh Deb, you crack me up. Your description of "bad shit going on" is SO on point for this disease. 🙂

        xo Jen

        • January 23, 2017 at 9:22 pm
        debwray
        Participant

        Back on the combo…who hoo. Been at clinic from 9.00am…bloods.. Docs. Blood machine broke down.   Should finish treatment by 9.45 pm then the 70 mile drive home. But its been a good day..back on the treatment wagon..and not thrown off the trial. Anyone else on checkmate 401? They are extending drug holiday to 12 weeks but not yet rubber stamped by the needed committees…..makes sense as trial about managementofside effects and nearly thrown off trial as had side effects… Doh… Get pithier when tapping out on tablet…but you know what I mean..

        Love Deb

        Xx

        • January 23, 2017 at 9:22 pm
        debwray
        Participant

        Back on the combo…who hoo. Been at clinic from 9.00am…bloods.. Docs. Blood machine broke down.   Should finish treatment by 9.45 pm then the 70 mile drive home. But its been a good day..back on the treatment wagon..and not thrown off the trial. Anyone else on checkmate 401? They are extending drug holiday to 12 weeks but not yet rubber stamped by the needed committees…..makes sense as trial about managementofside effects and nearly thrown off trial as had side effects… Doh… Get pithier when tapping out on tablet…but you know what I mean..

        Love Deb

        Xx

        • January 23, 2017 at 9:22 pm
        debwray
        Participant

        Back on the combo…who hoo. Been at clinic from 9.00am…bloods.. Docs. Blood machine broke down.   Should finish treatment by 9.45 pm then the 70 mile drive home. But its been a good day..back on the treatment wagon..and not thrown off the trial. Anyone else on checkmate 401? They are extending drug holiday to 12 weeks but not yet rubber stamped by the needed committees…..makes sense as trial about managementofside effects and nearly thrown off trial as had side effects… Doh… Get pithier when tapping out on tablet…but you know what I mean..

        Love Deb

        Xx

        • January 23, 2017 at 6:13 pm
        snow white
        Participant

        Oh Deb, you crack me up. Your description of "bad shit going on" is SO on point for this disease. 🙂

        xo Jen

        • January 23, 2017 at 6:13 pm
        snow white
        Participant

        Oh Deb, you crack me up. Your description of "bad shit going on" is SO on point for this disease. 🙂

        xo Jen

      • January 23, 2017 at 7:13 am
      debwray
      Participant

      Hi,

      Another scenario is that the remaining lumps or tumours can be filled with immunre cells and the melanoma cells have gone. Until you have evidence of bad shit going on, it is conforting to know there is another more positive explanation. The ride can be wild at  times..but sometimes knowing there may be a positive explanation helps us to deal with current uncertainties

      Good luck with your treatment

      Deb

      • January 23, 2017 at 7:13 am
      debwray
      Participant

      Hi,

      Another scenario is that the remaining lumps or tumours can be filled with immunre cells and the melanoma cells have gone. Until you have evidence of bad shit going on, it is conforting to know there is another more positive explanation. The ride can be wild at  times..but sometimes knowing there may be a positive explanation helps us to deal with current uncertainties

      Good luck with your treatment

      Deb

      • January 23, 2017 at 10:57 am
      Amanda
      Participant
      Hi. My husband was part of the stage 3 study of anti pd1 and had initial shrinkage of all tumors, some more than others, some gone. Then after probably 6 months to a year im not sure they all became stable with no shrinkage or new growths. He contined being stable for another 2 1/2 years or so. So yes stable is good and means the immune sysyem is keeping the cancer in check.

      Note that he was only getting the anti pd1, but had previously received yervoy.

      About 4 months ago he had 2 new tumors pop up on thighs and one on chest. He was then added to a trial combining anti pd1 with dynavex sd-101 which is an agent injected directly into one tumor to innitiate an immune response. So far his immune system has revved back up and has again shrunk some tumors with some stable. No new growths so far.

      Best wishes and i hope the best.

      Also, march 9th of this year will mark 5 years since he was diagnosed (stage 4 right off the bat). Dont ever lose hope. There are long term survivors out there.

      -Amanda-

      • January 23, 2017 at 10:57 am
      Amanda
      Participant
      Hi. My husband was part of the stage 3 study of anti pd1 and had initial shrinkage of all tumors, some more than others, some gone. Then after probably 6 months to a year im not sure they all became stable with no shrinkage or new growths. He contined being stable for another 2 1/2 years or so. So yes stable is good and means the immune sysyem is keeping the cancer in check.

      Note that he was only getting the anti pd1, but had previously received yervoy.

      About 4 months ago he had 2 new tumors pop up on thighs and one on chest. He was then added to a trial combining anti pd1 with dynavex sd-101 which is an agent injected directly into one tumor to innitiate an immune response. So far his immune system has revved back up and has again shrunk some tumors with some stable. No new growths so far.

      Best wishes and i hope the best.

      Also, march 9th of this year will mark 5 years since he was diagnosed (stage 4 right off the bat). Dont ever lose hope. There are long term survivors out there.

      -Amanda-

      • January 23, 2017 at 10:57 am
      Amanda
      Participant
      Hi. My husband was part of the stage 3 study of anti pd1 and had initial shrinkage of all tumors, some more than others, some gone. Then after probably 6 months to a year im not sure they all became stable with no shrinkage or new growths. He contined being stable for another 2 1/2 years or so. So yes stable is good and means the immune sysyem is keeping the cancer in check.

      Note that he was only getting the anti pd1, but had previously received yervoy.

      About 4 months ago he had 2 new tumors pop up on thighs and one on chest. He was then added to a trial combining anti pd1 with dynavex sd-101 which is an agent injected directly into one tumor to innitiate an immune response. So far his immune system has revved back up and has again shrunk some tumors with some stable. No new growths so far.

      Best wishes and i hope the best.

      Also, march 9th of this year will mark 5 years since he was diagnosed (stage 4 right off the bat). Dont ever lose hope. There are long term survivors out there.

      -Amanda-

Viewing 8 reply threads

Tagged: 

  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

Popular Topics