Devistated
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.

Devistated

› Forums › General Melanoma Community › Devistated

  • Post
    • February 6, 2016 at 12:52 am
    jamieth29
    Participant
    Went in today for scan results and brain mri showed 3 spots. Two 3mm and one 4mm. The doctor wants to wait two weeks and do another mri to make sure they are mets as he said he’s not convinced they are. They were not present on mri in June said there is no edema for whatever that’s worth. I have a appointment with radiologist Monday. The body pet/ct was clear. The doctor wants me to go ahead and start nivo next week. He said i shouldn’t do anything until we repeat scan. Don’t know what else they could be…to me it was pretty cut and dried they didn’t show in June and are now present so…advice? Could hardly be around kids when i got home so scared that the kids will have to watch this play out.
Viewing 29 reply threads
  • Replies
      • February 6, 2016 at 2:07 am
      Bubbles
      Participant

      Sorry for the scary news, Jamie. My advice…Nivo…ASAP! Strike now! Add scans, SRS, surgery…whatever as need be…and as you figure out what these buggers are. Maybe they are red herrings…and that would be great. But you had need of Nivo already…so press on!  Hang in there! C

      • February 6, 2016 at 2:07 am
      Bubbles
      Participant

      Sorry for the scary news, Jamie. My advice…Nivo…ASAP! Strike now! Add scans, SRS, surgery…whatever as need be…and as you figure out what these buggers are. Maybe they are red herrings…and that would be great. But you had need of Nivo already…so press on!  Hang in there! C

      • February 6, 2016 at 2:07 am
      Bubbles
      Participant

      Sorry for the scary news, Jamie. My advice…Nivo…ASAP! Strike now! Add scans, SRS, surgery…whatever as need be…and as you figure out what these buggers are. Maybe they are red herrings…and that would be great. But you had need of Nivo already…so press on!  Hang in there! C

        • February 6, 2016 at 4:30 am
        jamieth29
        Participant
        That is the plan so far Celest. I have a “chemo” education class Wednesday then i think first dose will be Friday. I’m assuming srs will be the route. Not sure about surgery. Lots to figure out.
        • February 6, 2016 at 4:30 am
        jamieth29
        Participant
        That is the plan so far Celest. I have a “chemo” education class Wednesday then i think first dose will be Friday. I’m assuming srs will be the route. Not sure about surgery. Lots to figure out.
        • February 6, 2016 at 4:30 am
        jamieth29
        Participant
        That is the plan so far Celest. I have a “chemo” education class Wednesday then i think first dose will be Friday. I’m assuming srs will be the route. Not sure about surgery. Lots to figure out.
      • February 6, 2016 at 4:16 am
      Rita and Charles
      Participant

      So sorry to hear – I agree with Celeste, start immediately, do everything.  Can I ask, how has your blood work been? 

      Rita

      • February 6, 2016 at 4:16 am
      Rita and Charles
      Participant

      So sorry to hear – I agree with Celeste, start immediately, do everything.  Can I ask, how has your blood work been? 

      Rita

      • February 6, 2016 at 4:16 am
      Rita and Charles
      Participant

      So sorry to hear – I agree with Celeste, start immediately, do everything.  Can I ask, how has your blood work been? 

      Rita

        • February 6, 2016 at 4:26 am
        jamieth29
        Participant
        all blood work has been normal
        • February 6, 2016 at 4:26 am
        jamieth29
        Participant
        all blood work has been normal
        • February 6, 2016 at 4:26 am
        jamieth29
        Participant
        all blood work has been normal
      • February 6, 2016 at 2:16 pm
      mms7angels1
      Participant

      Hello

      Good news on the pet/ct. I've had several mets over the years. Last year found a met in the brain in late July, started Nivo in early August, several days later had brain met SBRT, doing well. Been on Nivo now for 6+ months and have had 2 follow up brain mris and 2 CTs and no new lesions. Take a deep breath, start treatment and go from there. 

      Prayers and blessings sent your way

      Maureen

      • February 6, 2016 at 2:16 pm
      mms7angels1
      Participant

      Hello

      Good news on the pet/ct. I've had several mets over the years. Last year found a met in the brain in late July, started Nivo in early August, several days later had brain met SBRT, doing well. Been on Nivo now for 6+ months and have had 2 follow up brain mris and 2 CTs and no new lesions. Take a deep breath, start treatment and go from there. 

      Prayers and blessings sent your way

      Maureen

      • February 6, 2016 at 2:16 pm
      mms7angels1
      Participant

      Hello

      Good news on the pet/ct. I've had several mets over the years. Last year found a met in the brain in late July, started Nivo in early August, several days later had brain met SBRT, doing well. Been on Nivo now for 6+ months and have had 2 follow up brain mris and 2 CTs and no new lesions. Take a deep breath, start treatment and go from there. 

      Prayers and blessings sent your way

      Maureen

        • February 7, 2016 at 2:52 am
        jamieth29
        Participant
        Thank you Maureen I’m gonna try and just take one day at a time…all I can do.
        • February 7, 2016 at 2:52 am
        jamieth29
        Participant
        Thank you Maureen I’m gonna try and just take one day at a time…all I can do.
        • February 7, 2016 at 2:52 am
        jamieth29
        Participant
        Thank you Maureen I’m gonna try and just take one day at a time…all I can do.
      • February 6, 2016 at 2:36 pm
      jenny22
      Participant

      OH Jamie, I can't tell you how sad I was when I read this…..honestly, it made me cry…..BUT, for now i am going to hope maybe your DOC is right….and that they aren't mets…..we can hope…..Good news that the PET/CT was clear otherwise.

      Regardless, starting NIVO asap makes sense and that was your plan before this…..Hopefully NIVO will do its thing, and if ultimately SRS is needed then that too will knock these things out!!!! Fortunately they are small.

      I cant imagine how you are feeling right now…(though I think i can)…..

      Thinking about you and sending good thoughts. Keep us posted.

      Best,

      Jenny

       

       

       

      • February 6, 2016 at 2:36 pm
      jenny22
      Participant

      OH Jamie, I can't tell you how sad I was when I read this…..honestly, it made me cry…..BUT, for now i am going to hope maybe your DOC is right….and that they aren't mets…..we can hope…..Good news that the PET/CT was clear otherwise.

      Regardless, starting NIVO asap makes sense and that was your plan before this…..Hopefully NIVO will do its thing, and if ultimately SRS is needed then that too will knock these things out!!!! Fortunately they are small.

      I cant imagine how you are feeling right now…(though I think i can)…..

      Thinking about you and sending good thoughts. Keep us posted.

      Best,

      Jenny

       

       

       

      • February 6, 2016 at 2:36 pm
      jenny22
      Participant

      OH Jamie, I can't tell you how sad I was when I read this…..honestly, it made me cry…..BUT, for now i am going to hope maybe your DOC is right….and that they aren't mets…..we can hope…..Good news that the PET/CT was clear otherwise.

      Regardless, starting NIVO asap makes sense and that was your plan before this…..Hopefully NIVO will do its thing, and if ultimately SRS is needed then that too will knock these things out!!!! Fortunately they are small.

      I cant imagine how you are feeling right now…(though I think i can)…..

      Thinking about you and sending good thoughts. Keep us posted.

      Best,

      Jenny

       

       

       

        • February 7, 2016 at 2:51 am
        jamieth29
        Participant
        Thank you Jenny, i was so sure i had got in front of it this time.
        • February 7, 2016 at 2:51 am
        jamieth29
        Participant
        Thank you Jenny, i was so sure i had got in front of it this time.
        • February 7, 2016 at 2:51 am
        jamieth29
        Participant
        Thank you Jenny, i was so sure i had got in front of it this time.
      • February 6, 2016 at 10:08 pm
      gregor913
      Participant
      Prayers for you Jaime. When I read that I was really upset. I’m praying that in 2 weeks they turn out to be nothing. If not your young and strong and will get through this. Greg
      • February 6, 2016 at 10:08 pm
      gregor913
      Participant
      Prayers for you Jaime. When I read that I was really upset. I’m praying that in 2 weeks they turn out to be nothing. If not your young and strong and will get through this. Greg
      • February 6, 2016 at 10:08 pm
      gregor913
      Participant
      Prayers for you Jaime. When I read that I was really upset. I’m praying that in 2 weeks they turn out to be nothing. If not your young and strong and will get through this. Greg
      • February 7, 2016 at 1:58 am
      Mat
      Participant

      Jamie, sorry to hear.  For what it's worth, SRS is an easy procedure.  You might also get the benefit of combining radiation with immunotherapy.

      • February 7, 2016 at 1:58 am
      Mat
      Participant

      Jamie, sorry to hear.  For what it's worth, SRS is an easy procedure.  You might also get the benefit of combining radiation with immunotherapy.

      • February 7, 2016 at 1:58 am
      Mat
      Participant

      Jamie, sorry to hear.  For what it's worth, SRS is an easy procedure.  You might also get the benefit of combining radiation with immunotherapy.

        • February 7, 2016 at 2:25 am
        jamieth29
        Participant
        Thanks Mat, i know you have been down this road, what I’m not getting is how they know for sure. Is it right to wait the 2 weeks and check again? If they are mets which i imagine they are, isn’t the quicker to treat the better? I just don’t see a scenario where they are something else. He didn’t say lets talk with a neurosurgeon or anything. I honestly think he was in a little shock also. He did set me up with the radiation oncologist monday morning. He mentioned whole brain radiation if they are mets and i instantly said no… that’s not the way to go after these. I’m going to try to get a hold of Dr Luke Monday but he might be on maternity leave for 2 weeks. I’m freaked.
        • February 7, 2016 at 2:25 am
        jamieth29
        Participant
        Thanks Mat, i know you have been down this road, what I’m not getting is how they know for sure. Is it right to wait the 2 weeks and check again? If they are mets which i imagine they are, isn’t the quicker to treat the better? I just don’t see a scenario where they are something else. He didn’t say lets talk with a neurosurgeon or anything. I honestly think he was in a little shock also. He did set me up with the radiation oncologist monday morning. He mentioned whole brain radiation if they are mets and i instantly said no… that’s not the way to go after these. I’m going to try to get a hold of Dr Luke Monday but he might be on maternity leave for 2 weeks. I’m freaked.
        • February 7, 2016 at 2:25 am
        jamieth29
        Participant
        Thanks Mat, i know you have been down this road, what I’m not getting is how they know for sure. Is it right to wait the 2 weeks and check again? If they are mets which i imagine they are, isn’t the quicker to treat the better? I just don’t see a scenario where they are something else. He didn’t say lets talk with a neurosurgeon or anything. I honestly think he was in a little shock also. He did set me up with the radiation oncologist monday morning. He mentioned whole brain radiation if they are mets and i instantly said no… that’s not the way to go after these. I’m going to try to get a hold of Dr Luke Monday but he might be on maternity leave for 2 weeks. I’m freaked.
        • February 7, 2016 at 4:15 pm
        kylez
        Participant

        I think both times for me (Kaiser and UCSF) a multidisciplinary tumor review board was convened, as a matter of standard procedure I believe. Neurosurgeon, Radiation Oncologist, Oncologist were all represened and discussing the images and decided on the best treatment plan to recommend. 

        • February 7, 2016 at 4:15 pm
        kylez
        Participant

        I think both times for me (Kaiser and UCSF) a multidisciplinary tumor review board was convened, as a matter of standard procedure I believe. Neurosurgeon, Radiation Oncologist, Oncologist were all represened and discussing the images and decided on the best treatment plan to recommend. 

        • February 7, 2016 at 4:15 pm
        kylez
        Participant

        I think both times for me (Kaiser and UCSF) a multidisciplinary tumor review board was convened, as a matter of standard procedure I believe. Neurosurgeon, Radiation Oncologist, Oncologist were all represened and discussing the images and decided on the best treatment plan to recommend. 

        • February 7, 2016 at 11:05 pm
        Mat
        Participant

        I agree–not excited about waiting and WBR is a non-starter unless the mets could not be treated with SRS or surgery.

        • February 7, 2016 at 11:05 pm
        Mat
        Participant

        I agree–not excited about waiting and WBR is a non-starter unless the mets could not be treated with SRS or surgery.

        • February 7, 2016 at 11:05 pm
        Mat
        Participant

        I agree–not excited about waiting and WBR is a non-starter unless the mets could not be treated with SRS or surgery.

      • February 7, 2016 at 2:10 am
      BrianP
      Participant

      I'm sorry Jamie.  I'm praying that your doctor is right in is hesitance to call them mets.  If they are something it sounds like you're catching them early.  Folks have had some great response to SRS and Nivo. 

      Hang in there.  Prayers coming your way.

      Brian

      • February 7, 2016 at 2:10 am
      BrianP
      Participant

      I'm sorry Jamie.  I'm praying that your doctor is right in is hesitance to call them mets.  If they are something it sounds like you're catching them early.  Folks have had some great response to SRS and Nivo. 

      Hang in there.  Prayers coming your way.

      Brian

      • February 7, 2016 at 2:10 am
      BrianP
      Participant

      I'm sorry Jamie.  I'm praying that your doctor is right in is hesitance to call them mets.  If they are something it sounds like you're catching them early.  Folks have had some great response to SRS and Nivo. 

      Hang in there.  Prayers coming your way.

      Brian

      • February 7, 2016 at 4:39 am
      AshleyS
      Participant

      You're so right, Jaime – you have to live one day at a time. It can be tough to do that and to remain positive, but do your best. And as far as your kiddos go, they'll love you unconditionally, no matter what, so use their positivity. In the meantime, get on Opdivo. It's been a lifesaver for so many, including me.

      Ashley

      • February 7, 2016 at 4:39 am
      AshleyS
      Participant

      You're so right, Jaime – you have to live one day at a time. It can be tough to do that and to remain positive, but do your best. And as far as your kiddos go, they'll love you unconditionally, no matter what, so use their positivity. In the meantime, get on Opdivo. It's been a lifesaver for so many, including me.

      Ashley

      • February 7, 2016 at 4:39 am
      AshleyS
      Participant

      You're so right, Jaime – you have to live one day at a time. It can be tough to do that and to remain positive, but do your best. And as far as your kiddos go, they'll love you unconditionally, no matter what, so use their positivity. In the meantime, get on Opdivo. It's been a lifesaver for so many, including me.

      Ashley

      • February 7, 2016 at 2:42 pm
      ed williams
      Participant

      Hi Jamie, in sept.2013 I had three small brain tumors almost the same size as yours. I was treated by cyberknife at the Ottawa General hospital and three months later the post scan showed total resolution with no swelling. I am glad you said no to whole brain radiation, studies are showing that it has bad cognitive decline issues. I hope your meeting with the radiation oncologist goes well. Best wishes!!! Ed

      • February 7, 2016 at 2:42 pm
      ed williams
      Participant

      Hi Jamie, in sept.2013 I had three small brain tumors almost the same size as yours. I was treated by cyberknife at the Ottawa General hospital and three months later the post scan showed total resolution with no swelling. I am glad you said no to whole brain radiation, studies are showing that it has bad cognitive decline issues. I hope your meeting with the radiation oncologist goes well. Best wishes!!! Ed

      • February 7, 2016 at 2:42 pm
      ed williams
      Participant

      Hi Jamie, in sept.2013 I had three small brain tumors almost the same size as yours. I was treated by cyberknife at the Ottawa General hospital and three months later the post scan showed total resolution with no swelling. I am glad you said no to whole brain radiation, studies are showing that it has bad cognitive decline issues. I hope your meeting with the radiation oncologist goes well. Best wishes!!! Ed

      • February 7, 2016 at 4:11 pm
      kylez
      Participant

      Hi Jamie,

      I understand it being devastating news.

      I hope they'll have SRS ready-to-go quickly if the next MRI makes them think it's necessary. I can't comment on the 2-week delay. Both times with me, the mets were caught much later and there was little doubt. I've heard the webinar with Dr. Chiang from Yale where she says the sooner they can be caught, the better. I don't know if you should be in doubt. If you are, and there's a way to get a second opinion quicker than the 2 weeks elapses, maybe that's something to consider. But my own experience was with larger ones both times, so my experience on timing is not a good analogy. Your profile doesn't list where you are treated. For me the first time I was at a Kaiser, the second time I was at UCSF which has super-highly-rated neurosurgery and radiation oncology programs. While at Kaiser I got second opinions several times from UCSF.

      FWIW I had Gamma Knife in 2011. So far so good. I'm just finishing up 2 years in a clinical trial, Nivo is one of hte drugs. 

      Hang in there. 

      – Kyle

      • February 7, 2016 at 4:11 pm
      kylez
      Participant

      Hi Jamie,

      I understand it being devastating news.

      I hope they'll have SRS ready-to-go quickly if the next MRI makes them think it's necessary. I can't comment on the 2-week delay. Both times with me, the mets were caught much later and there was little doubt. I've heard the webinar with Dr. Chiang from Yale where she says the sooner they can be caught, the better. I don't know if you should be in doubt. If you are, and there's a way to get a second opinion quicker than the 2 weeks elapses, maybe that's something to consider. But my own experience was with larger ones both times, so my experience on timing is not a good analogy. Your profile doesn't list where you are treated. For me the first time I was at a Kaiser, the second time I was at UCSF which has super-highly-rated neurosurgery and radiation oncology programs. While at Kaiser I got second opinions several times from UCSF.

      FWIW I had Gamma Knife in 2011. So far so good. I'm just finishing up 2 years in a clinical trial, Nivo is one of hte drugs. 

      Hang in there. 

      – Kyle

      • February 7, 2016 at 4:11 pm
      kylez
      Participant

      Hi Jamie,

      I understand it being devastating news.

      I hope they'll have SRS ready-to-go quickly if the next MRI makes them think it's necessary. I can't comment on the 2-week delay. Both times with me, the mets were caught much later and there was little doubt. I've heard the webinar with Dr. Chiang from Yale where she says the sooner they can be caught, the better. I don't know if you should be in doubt. If you are, and there's a way to get a second opinion quicker than the 2 weeks elapses, maybe that's something to consider. But my own experience was with larger ones both times, so my experience on timing is not a good analogy. Your profile doesn't list where you are treated. For me the first time I was at a Kaiser, the second time I was at UCSF which has super-highly-rated neurosurgery and radiation oncology programs. While at Kaiser I got second opinions several times from UCSF.

      FWIW I had Gamma Knife in 2011. So far so good. I'm just finishing up 2 years in a clinical trial, Nivo is one of hte drugs. 

      Hang in there. 

      – Kyle

        • February 7, 2016 at 4:48 pm
        jamieth29
        Participant
        Kyle-thanks for the info i am being treated both locally in WI and at university of Chicago by Dr Jason Luke. Monday i can hopefully get a hold of him and get his opinion.
        • February 7, 2016 at 4:48 pm
        jamieth29
        Participant
        Kyle-thanks for the info i am being treated both locally in WI and at university of Chicago by Dr Jason Luke. Monday i can hopefully get a hold of him and get his opinion.
        • February 7, 2016 at 4:48 pm
        jamieth29
        Participant
        Kyle-thanks for the info i am being treated both locally in WI and at university of Chicago by Dr Jason Luke. Monday i can hopefully get a hold of him and get his opinion.
Viewing 29 reply threads
  • 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