More good news but posting with a heavy heart

Hi Judy – I sincerely wish the best outcome for Steven too – his situation sounds similar to my sister's. We too had hoped for Gamma knife but could not get it due to numbers of mets BUT I should mention that we've been told she could get gamma in the future should more brain mets occur, provided there are 4 or less.

You asked on your thread about anything additional that others are doing in conjunction with treatment – my sister isn't doing anything really profound but she has eliminated sugar as much as possible (cancer loves to grow in sugar), takes turmeric and makes sure she gets a good helping of yogurt in every day.

Wishing you and all other newcomers the best!!!!

Barb

Hi Judy – I sincerely wish the best outcome for Steven too – his situation sounds similar to my sister's. We too had hoped for Gamma knife but could not get it due to numbers of mets BUT I should mention that we've been told she could get gamma in the future should more brain mets occur, provided there are 4 or less.

You asked on your thread about anything additional that others are doing in conjunction with treatment – my sister isn't doing anything really profound but she has eliminated sugar as much as possible (cancer loves to grow in sugar), takes turmeric and makes sure she gets a good helping of yogurt in every day.

Wishing you and all other newcomers the best!!!!

Barb

Hi Niki – I agree 100% and we were pretty upset that gamma knife wasn't an option available to her. There's a couple of reasons though, not the least being that we are in ON, Canada, on a universal healthcare system and everything here is done with a " prognosis v $ cost " reasoning – 4 is the limit and that's it. 

She did go to NYC for a 2nd opinion (Weill Cornell Brain & Spine Center) in the little time to act that there was but they agreed with the WBR too. They did make a couple of great suggestions though  but there were even a couple more complications that precluded trying those. I could elaborate but it makes me angry all over again.

On this board though I learned that a facility in Buffalo offers state of the art gamma knife and, if we ever have to revisit that dilemma, I think that's where we'll look.

Thanks for your best wishes Niki – ours back to you too!!

Barb 

Hi Niki – I agree 100% and we were pretty upset that gamma knife wasn't an option available to her. There's a couple of reasons though, not the least being that we are in ON, Canada, on a universal healthcare system and everything here is done with a " prognosis v $ cost " reasoning – 4 is the limit and that's it. 

She did go to NYC for a 2nd opinion (Weill Cornell Brain & Spine Center) in the little time to act that there was but they agreed with the WBR too. They did make a couple of great suggestions though  but there were even a couple more complications that precluded trying those. I could elaborate but it makes me angry all over again.

On this board though I learned that a facility in Buffalo offers state of the art gamma knife and, if we ever have to revisit that dilemma, I think that's where we'll look.

Thanks for your best wishes Niki – ours back to you too!!

Barb 

Hi Niki – I agree 100% and we were pretty upset that gamma knife wasn't an option available to her. There's a couple of reasons though, not the least being that we are in ON, Canada, on a universal healthcare system and everything here is done with a " prognosis v $ cost " reasoning – 4 is the limit and that's it. 

She did go to NYC for a 2nd opinion (Weill Cornell Brain & Spine Center) in the little time to act that there was but they agreed with the WBR too. They did make a couple of great suggestions though  but there were even a couple more complications that precluded trying those. I could elaborate but it makes me angry all over again.

On this board though I learned that a facility in Buffalo offers state of the art gamma knife and, if we ever have to revisit that dilemma, I think that's where we'll look.

Thanks for your best wishes Niki – ours back to you too!!

Barb 

Hi Judy – I sincerely wish the best outcome for Steven too – his situation sounds similar to my sister's. We too had hoped for Gamma knife but could not get it due to numbers of mets BUT I should mention that we've been told she could get gamma in the future should more brain mets occur, provided there are 4 or less.

You asked on your thread about anything additional that others are doing in conjunction with treatment – my sister isn't doing anything really profound but she has eliminated sugar as much as possible (cancer loves to grow in sugar), takes turmeric and makes sure she gets a good helping of yogurt in every day.

Wishing you and all other newcomers the best!!!!

Barb

Yes, I sure can – I'll try to be brief:

– 1st dx xmas 2014, followed by WLE and SNB – mel found in 2 nodes, so rest of that group taken – was told "all clear" by Easter (2015)

– end Nov. 2015, extreme back pain for no apparent reason – exray revealed T12 compund fracture – bone scan results and 2nd dx in just in time for xmas again

– all but 2 vertebrae in thoracic invaded by mel – all vertebrae of lumbar spine involved – none of the cervical spine was touched, thank God – her pain was so extreme she received radiation for it (this was a palliative measure only) – finished rads by end of Jan. 2016 – CT and brain scan were also done that month

– Feb. 2016, started Taf/Mek combo (she is BRAF +) because her tumour burden was so high – by then, we knew how far it had spread (heart, brain and colon were all clear at that point but it was just about everywhere else)

– within days, and I'm not kidding, we saw sub-qs literally disappearing!! – after one week, several of her bone mets could not be felt

– week 2 on Taf/Mek brought the fevers, chills, sooo sick, it was awful – that's when I joined this board, desperate for answers

– rash set in too – progressed – onc played with Taf/Mek dose to see if we could get a handle on it, she also didn't like the fevers spiking so high (103 at times) – nothing worked on the rash and it was eventually determined to be a grade 3 allergic reaction – had spread to 80% of her body and she was taken off Taf/Mek – we were devastated because we could see how well it was working on the mel – that was in March

– April CT showed that only the few weeks of Taf/Mek worked enough magic, that she was allowed to begin immunotherapy – started on ipi/nivo infusions – was to receive the standard 4 and then onto nivo only

– after 1st infusion, ipi actually attacked her retinas – she didn't say anything for fear of being booted off the trial but her sight was getting worse daily

– day after 2nd infusion she woke up with roaring tinnitus – saw the onc immediately – interestingly, onc was more concerned about the eyes than the tinnitus (we were not – scared to death that it was brain mets) – onc confirmed ipi had attacked retinas and brain scan confirmed brain mets – so many of them that they were never counted, at least one bleeding (ultimately there were three bleeders)

– WBR was the only option given (we fought for other treatment and even sought gamma-knife in the US but everyone concurred WBR immediately – max rads)

– that radiation started in May and ended in June

– July, was allowed back into immunotherapy program but on nivo only – so, she really only received two infusions of ipi 

– 1st brain scan showed no change other than bleeding had stopped, all the same tumours were there but nothing new – and they still refused to count them

– 1st thoracic CT (Sept., I think) showed great response to immunotherapy – shrinkage everywhere and some structures clear

– 2nd brain scan showed complete resolution of everything – there's still a couple of things "lighting up" that they want to watch but they don't believe it's the mel

– results of last thoracic scan are the subject of this post … and that's where we are now 🙂

– hope this helps!!

Yes, I sure can – I'll try to be brief:

– 1st dx xmas 2014, followed by WLE and SNB – mel found in 2 nodes, so rest of that group taken – was told "all clear" by Easter (2015)

– end Nov. 2015, extreme back pain for no apparent reason – exray revealed T12 compund fracture – bone scan results and 2nd dx in just in time for xmas again

– all but 2 vertebrae in thoracic invaded by mel – all vertebrae of lumbar spine involved – none of the cervical spine was touched, thank God – her pain was so extreme she received radiation for it (this was a palliative measure only) – finished rads by end of Jan. 2016 – CT and brain scan were also done that month

– Feb. 2016, started Taf/Mek combo (she is BRAF +) because her tumour burden was so high – by then, we knew how far it had spread (heart, brain and colon were all clear at that point but it was just about everywhere else)

– within days, and I'm not kidding, we saw sub-qs literally disappearing!! – after one week, several of her bone mets could not be felt

– week 2 on Taf/Mek brought the fevers, chills, sooo sick, it was awful – that's when I joined this board, desperate for answers

– rash set in too – progressed – onc played with Taf/Mek dose to see if we could get a handle on it, she also didn't like the fevers spiking so high (103 at times) – nothing worked on the rash and it was eventually determined to be a grade 3 allergic reaction – had spread to 80% of her body and she was taken off Taf/Mek – we were devastated because we could see how well it was working on the mel – that was in March

– April CT showed that only the few weeks of Taf/Mek worked enough magic, that she was allowed to begin immunotherapy – started on ipi/nivo infusions – was to receive the standard 4 and then onto nivo only

– after 1st infusion, ipi actually attacked her retinas – she didn't say anything for fear of being booted off the trial but her sight was getting worse daily

– day after 2nd infusion she woke up with roaring tinnitus – saw the onc immediately – interestingly, onc was more concerned about the eyes than the tinnitus (we were not – scared to death that it was brain mets) – onc confirmed ipi had attacked retinas and brain scan confirmed brain mets – so many of them that they were never counted, at least one bleeding (ultimately there were three bleeders)

– WBR was the only option given (we fought for other treatment and even sought gamma-knife in the US but everyone concurred WBR immediately – max rads)

– that radiation started in May and ended in June

– July, was allowed back into immunotherapy program but on nivo only – so, she really only received two infusions of ipi 

– 1st brain scan showed no change other than bleeding had stopped, all the same tumours were there but nothing new – and they still refused to count them

– 1st thoracic CT (Sept., I think) showed great response to immunotherapy – shrinkage everywhere and some structures clear

– 2nd brain scan showed complete resolution of everything – there's still a couple of things "lighting up" that they want to watch but they don't believe it's the mel

– results of last thoracic scan are the subject of this post … and that's where we are now 🙂

– hope this helps!!

Yes, I sure can – I'll try to be brief:

– 1st dx xmas 2014, followed by WLE and SNB – mel found in 2 nodes, so rest of that group taken – was told "all clear" by Easter (2015)

– end Nov. 2015, extreme back pain for no apparent reason – exray revealed T12 compund fracture – bone scan results and 2nd dx in just in time for xmas again

– all but 2 vertebrae in thoracic invaded by mel – all vertebrae of lumbar spine involved – none of the cervical spine was touched, thank God – her pain was so extreme she received radiation for it (this was a palliative measure only) – finished rads by end of Jan. 2016 – CT and brain scan were also done that month

– Feb. 2016, started Taf/Mek combo (she is BRAF +) because her tumour burden was so high – by then, we knew how far it had spread (heart, brain and colon were all clear at that point but it was just about everywhere else)

– within days, and I'm not kidding, we saw sub-qs literally disappearing!! – after one week, several of her bone mets could not be felt

– week 2 on Taf/Mek brought the fevers, chills, sooo sick, it was awful – that's when I joined this board, desperate for answers

– rash set in too – progressed – onc played with Taf/Mek dose to see if we could get a handle on it, she also didn't like the fevers spiking so high (103 at times) – nothing worked on the rash and it was eventually determined to be a grade 3 allergic reaction – had spread to 80% of her body and she was taken off Taf/Mek – we were devastated because we could see how well it was working on the mel – that was in March

– April CT showed that only the few weeks of Taf/Mek worked enough magic, that she was allowed to begin immunotherapy – started on ipi/nivo infusions – was to receive the standard 4 and then onto nivo only

– after 1st infusion, ipi actually attacked her retinas – she didn't say anything for fear of being booted off the trial but her sight was getting worse daily

– day after 2nd infusion she woke up with roaring tinnitus – saw the onc immediately – interestingly, onc was more concerned about the eyes than the tinnitus (we were not – scared to death that it was brain mets) – onc confirmed ipi had attacked retinas and brain scan confirmed brain mets – so many of them that they were never counted, at least one bleeding (ultimately there were three bleeders)

– WBR was the only option given (we fought for other treatment and even sought gamma-knife in the US but everyone concurred WBR immediately – max rads)

– that radiation started in May and ended in June

– July, was allowed back into immunotherapy program but on nivo only – so, she really only received two infusions of ipi 

– 1st brain scan showed no change other than bleeding had stopped, all the same tumours were there but nothing new – and they still refused to count them

– 1st thoracic CT (Sept., I think) showed great response to immunotherapy – shrinkage everywhere and some structures clear

– 2nd brain scan showed complete resolution of everything – there's still a couple of things "lighting up" that they want to watch but they don't believe it's the mel

– results of last thoracic scan are the subject of this post … and that's where we are now 🙂

– hope this helps!!