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- This topic has 18 replies, 4 voices, and was last updated 9 years, 6 months ago by
Scooby123.
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- October 13, 2016 at 9:50 pm
Hi guys not been on for a while due to my mum passing and having to sort out things.
I went for my 3 month check today and was also expecting consultant to book 3 month scans as they are due. I have had a back issue which is causing me pain in both legs. I do suffer from back issues but this id not settling down. When i went today i explained about my back which they are going to do MRI to check. I was very concerned when they said for me to have brain scan and body scan in anothet 3 months time. That would be 6 months not 3 month scan. I had a tumour in brain had treatment last scan showed shrunk and liver lungs stable. I am worried that leaving me another 3 months is too long to check things still ok.
Do any of you guys have 6 month scans with liver lungs and brain activity.
Scooby123
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- October 14, 2016 at 2:22 am
I wish I had more to tell you but I'd push for the scan sooner if you're concerned. I think you know my story well…mostly NED for years with a few sub-q's spread out over that time. After 3rd one I pushed for treatment and went in nivo. After awhile on nivo I had another sub-q. Onc wanted to wait in scan and that scan in May showed the disease all over abdominal area. My point being, go with what you feel. I felt scan was warranted but felt onc was being rational. I don't place blame but maybe if I went with my intuition I'd be in better place, maybe not. It's water under bridge now. You've been so kind and supportive of me and just wanted to say you do what makes you comfortable and push for that. God bless you and keep us posted!
Josh
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- October 14, 2016 at 2:22 am
I wish I had more to tell you but I'd push for the scan sooner if you're concerned. I think you know my story well…mostly NED for years with a few sub-q's spread out over that time. After 3rd one I pushed for treatment and went in nivo. After awhile on nivo I had another sub-q. Onc wanted to wait in scan and that scan in May showed the disease all over abdominal area. My point being, go with what you feel. I felt scan was warranted but felt onc was being rational. I don't place blame but maybe if I went with my intuition I'd be in better place, maybe not. It's water under bridge now. You've been so kind and supportive of me and just wanted to say you do what makes you comfortable and push for that. God bless you and keep us posted!
Josh
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- October 14, 2016 at 2:22 am
I wish I had more to tell you but I'd push for the scan sooner if you're concerned. I think you know my story well…mostly NED for years with a few sub-q's spread out over that time. After 3rd one I pushed for treatment and went in nivo. After awhile on nivo I had another sub-q. Onc wanted to wait in scan and that scan in May showed the disease all over abdominal area. My point being, go with what you feel. I felt scan was warranted but felt onc was being rational. I don't place blame but maybe if I went with my intuition I'd be in better place, maybe not. It's water under bridge now. You've been so kind and supportive of me and just wanted to say you do what makes you comfortable and push for that. God bless you and keep us posted!
Josh
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- October 15, 2016 at 6:31 am
Hi Josh , hope you feeling a bit better after your treatment. This disease does what it wants and can take you by suprise at any time. Going back to hospital in three weeks so will ask more questions on scans. Thank you for your support too , it's so nice to have us guys to chat with when feeling worried or down. God bless us all fighting this disease.
will let you know how I go, take care Josh.
scooby123
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- October 15, 2016 at 6:31 am
Hi Josh , hope you feeling a bit better after your treatment. This disease does what it wants and can take you by suprise at any time. Going back to hospital in three weeks so will ask more questions on scans. Thank you for your support too , it's so nice to have us guys to chat with when feeling worried or down. God bless us all fighting this disease.
will let you know how I go, take care Josh.
scooby123
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- October 15, 2016 at 6:31 am
Hi Josh , hope you feeling a bit better after your treatment. This disease does what it wants and can take you by suprise at any time. Going back to hospital in three weeks so will ask more questions on scans. Thank you for your support too , it's so nice to have us guys to chat with when feeling worried or down. God bless us all fighting this disease.
will let you know how I go, take care Josh.
scooby123
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- October 14, 2016 at 2:44 am
Scooby,
Like you I'd be uncomfortable waiting another 3 months. The standard here in the states is 3 months. Not sure how you go about it in the UK but I'd do what I could to get that decision reversed. If you were having headaches I bet they would order a brain MRI. You can read between the lines with that statement.
Best of luck to you. Sorry about your mum passing.
Brian
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- October 14, 2016 at 2:44 am
Scooby,
Like you I'd be uncomfortable waiting another 3 months. The standard here in the states is 3 months. Not sure how you go about it in the UK but I'd do what I could to get that decision reversed. If you were having headaches I bet they would order a brain MRI. You can read between the lines with that statement.
Best of luck to you. Sorry about your mum passing.
Brian
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- October 14, 2016 at 2:44 am
Scooby,
Like you I'd be uncomfortable waiting another 3 months. The standard here in the states is 3 months. Not sure how you go about it in the UK but I'd do what I could to get that decision reversed. If you were having headaches I bet they would order a brain MRI. You can read between the lines with that statement.
Best of luck to you. Sorry about your mum passing.
Brian
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- October 15, 2016 at 6:41 am
Hi Brian,
hope you are well , thanks for message and yes see what you are saying regarding headache ect. I only had one scan on my head after treatment and they said it had worked and was no more mets. But I think having another check up 3 months after just one scan from treatment I would prefer a check just to make sure still ok and no more have popped up. I have not been on treatment only ippi last March 2015 which has kept my lungs , liver stable still mets but not growing. So having the one in my head and had treatment for that but still no other treatment given I do worry especially been stage I am they should check regular.
thank you
scooby123
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- October 15, 2016 at 6:41 am
Hi Brian,
hope you are well , thanks for message and yes see what you are saying regarding headache ect. I only had one scan on my head after treatment and they said it had worked and was no more mets. But I think having another check up 3 months after just one scan from treatment I would prefer a check just to make sure still ok and no more have popped up. I have not been on treatment only ippi last March 2015 which has kept my lungs , liver stable still mets but not growing. So having the one in my head and had treatment for that but still no other treatment given I do worry especially been stage I am they should check regular.
thank you
scooby123
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- October 15, 2016 at 6:41 am
Hi Brian,
hope you are well , thanks for message and yes see what you are saying regarding headache ect. I only had one scan on my head after treatment and they said it had worked and was no more mets. But I think having another check up 3 months after just one scan from treatment I would prefer a check just to make sure still ok and no more have popped up. I have not been on treatment only ippi last March 2015 which has kept my lungs , liver stable still mets but not growing. So having the one in my head and had treatment for that but still no other treatment given I do worry especially been stage I am they should check regular.
thank you
scooby123
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- October 14, 2016 at 4:04 pm
Just echoing Brian and Josh here…so sorry for what you are going through and for the loss of your mum. Yes, though "standards" of care for melanoma are hardly consistent anywhere, even within the US, generally for a Stage IV patient (and often for Stage III, depending) CT scans of body and an MRI of the brain are expected every three months for the first 5 years after the last evidence of disease, then every 6 months for a year or so (things are hazy here) then annually. However, just recently when scheduled for my annual (first time I've made it to that point!!!) brain MRI as a Stage IV melanoma patient status post brain mets, my insurance company refused the MRI of my brain because I was "5 years post any skin disease"!!!! Like we need to have one more thing to fight about when dealing with melanoma. They finally covered the MRI after multiple appeals from my doctor.
PS….I can hear what Brian is saying!!! Don't know anybody who doesn't have a headache given what you are going through!!!!
I wish you well. Celeste
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- October 15, 2016 at 6:54 am
Hi Celeste,
hope you ok Hun thanks for link , what always sticks in my mind when you had a brain met had treatment then went on treatment after . My concern was if I have developed a brain met had my treatment stopped working and need to go on another. Due to still stable which am God thankful for they say no need for treatment at this time. I can see what they say but it's hard when you are dealing with it. I am going back in 3 weeks so am going to ask about scans and if I could go on any trials even thou am stable but evidence on disease. Not sure how that would go down.
thanks Hun for info hope you are ok .
scooby123
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- October 15, 2016 at 6:54 am
Hi Celeste,
hope you ok Hun thanks for link , what always sticks in my mind when you had a brain met had treatment then went on treatment after . My concern was if I have developed a brain met had my treatment stopped working and need to go on another. Due to still stable which am God thankful for they say no need for treatment at this time. I can see what they say but it's hard when you are dealing with it. I am going back in 3 weeks so am going to ask about scans and if I could go on any trials even thou am stable but evidence on disease. Not sure how that would go down.
thanks Hun for info hope you are ok .
scooby123
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- October 15, 2016 at 6:54 am
Hi Celeste,
hope you ok Hun thanks for link , what always sticks in my mind when you had a brain met had treatment then went on treatment after . My concern was if I have developed a brain met had my treatment stopped working and need to go on another. Due to still stable which am God thankful for they say no need for treatment at this time. I can see what they say but it's hard when you are dealing with it. I am going back in 3 weeks so am going to ask about scans and if I could go on any trials even thou am stable but evidence on disease. Not sure how that would go down.
thanks Hun for info hope you are ok .
scooby123
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- October 14, 2016 at 4:04 pm
Just echoing Brian and Josh here…so sorry for what you are going through and for the loss of your mum. Yes, though "standards" of care for melanoma are hardly consistent anywhere, even within the US, generally for a Stage IV patient (and often for Stage III, depending) CT scans of body and an MRI of the brain are expected every three months for the first 5 years after the last evidence of disease, then every 6 months for a year or so (things are hazy here) then annually. However, just recently when scheduled for my annual (first time I've made it to that point!!!) brain MRI as a Stage IV melanoma patient status post brain mets, my insurance company refused the MRI of my brain because I was "5 years post any skin disease"!!!! Like we need to have one more thing to fight about when dealing with melanoma. They finally covered the MRI after multiple appeals from my doctor.
PS….I can hear what Brian is saying!!! Don't know anybody who doesn't have a headache given what you are going through!!!!
I wish you well. Celeste
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- October 14, 2016 at 4:04 pm
Just echoing Brian and Josh here…so sorry for what you are going through and for the loss of your mum. Yes, though "standards" of care for melanoma are hardly consistent anywhere, even within the US, generally for a Stage IV patient (and often for Stage III, depending) CT scans of body and an MRI of the brain are expected every three months for the first 5 years after the last evidence of disease, then every 6 months for a year or so (things are hazy here) then annually. However, just recently when scheduled for my annual (first time I've made it to that point!!!) brain MRI as a Stage IV melanoma patient status post brain mets, my insurance company refused the MRI of my brain because I was "5 years post any skin disease"!!!! Like we need to have one more thing to fight about when dealing with melanoma. They finally covered the MRI after multiple appeals from my doctor.
PS….I can hear what Brian is saying!!! Don't know anybody who doesn't have a headache given what you are going through!!!!
I wish you well. Celeste
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