Devistated

This topic has 60 replies, 11 voices, and was last updated 9 years, 3 months ago by Mat.

Post

- February 6, 2016 at 12:52 am
- Quote
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
  - Quote
  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
  - Quote
  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
  - Quote
  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
    
    Quote
    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
    
    Quote
    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
    
    Quote
    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
  - Quote
  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
  - Quote
  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
  - Quote
  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
    
    Quote
    jamieth29
    Participant
    
    all blood work has been normal
  - February 6, 2016 at 4:26 am
    
    Quote
    jamieth29
    Participant
    
    all blood work has been normal
  - February 6, 2016 at 4:26 am
    
    Quote
    jamieth29
    Participant
    
    all blood work has been normal
- - February 6, 2016 at 2:16 pm
  - Quote
  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
  - Quote
  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
  - Quote
  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
    
    Quote
    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
    
    Quote
    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
    
    Quote
    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
  - Quote
  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
  - Quote
  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
  - Quote
  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
    
    Quote
    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
    
    Quote
    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
    
    Quote
    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
  - Quote
  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
  - Quote
  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
  - Quote
  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 2:49 am
    
    Quote
    jamieth29
    Participant
    
    Thanks Greg
  - February 7, 2016 at 2:49 am
    
    Quote
    jamieth29
    Participant
    
    Thanks Greg
  - February 7, 2016 at 2:49 am
    
    Quote
    jamieth29
    Participant
    
    Thanks Greg
- - February 7, 2016 at 1:58 am
  - Quote
  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
  - Quote
  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
  - Quote
  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
    
    Quote
    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
    
    Quote
    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
    
    Quote
    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
    
    Quote
    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
    
    Quote
    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
    
    Quote
    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
    
    Quote
    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
    
    Quote
    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
    
    Quote
    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
  - Quote
  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
  - Quote
  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
  - Quote
  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 2:49 am
    
    Quote
    jamieth29
    Participant
    
    Thanks Brian
  - February 7, 2016 at 2:49 am
    
    Quote
    jamieth29
    Participant
    
    Thanks Brian
  - February 7, 2016 at 2:49 am
    
    Quote
    jamieth29
    Participant
    
    Thanks Brian
- - February 7, 2016 at 4:39 am
  - Quote
  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
  - Quote
  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
  - Quote
  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
  - Quote
  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
  - Quote
  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
  - Quote
  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
  - Quote
  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
  - Quote
  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
  - Quote
  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
    
    Quote
    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
    
    Quote
    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
    
    Quote
    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.