› Forums › General Melanoma Community › Nothing they can do?
- This topic has 63 replies, 12 voices, and was last updated 9 years, 1 month ago by
_Paul_.
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- February 10, 2015 at 11:19 am
Hello,
my wife was diagnosed with stage IV in June and did exceptionally well on BRAF/MEK until late November (PET negative, partial response) and then developed resistance. New mets in her hip area (3) and later also in her brain (small but 12pcs). Pembro was started on 3/12 and she had whole brain radiation and hip radiation and she improved physically and so did her blood values. She did have multiple epileptic attacks since mid Jan but always received until last weekend.
She has severe speech issues now and a New MRI revealed several mets have grown significantly and that brain sections are shifting.
Too many large mets to operate, too soon after WBR for Gamma Knife. There is some inflammation so that could be a sign of the pembro.
that seems to be the only option left wait pray and see if the Pembro (#4 last week) can act quickly…
any other advice? Reality starts to set in its just so tough as we thought we had plans B and Cs…
rick
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- February 10, 2015 at 2:02 pm
Oh Rick, I'm so sorry to hear about this. Have they entertained trying the YERVOY? Don't give up! Positive vibes your way.
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- February 10, 2015 at 2:12 pm
Rick,
Wish I had something to offer other than my prayers. I'm hoping that the imflammation is a sign the pembro is starting to kick in. You have been an amazing advocate for your wife and a tremendous source of wisdom and encouragement for so many of us on this board. Hang in there.
Brian
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- February 10, 2015 at 2:12 pm
Rick,
Wish I had something to offer other than my prayers. I'm hoping that the imflammation is a sign the pembro is starting to kick in. You have been an amazing advocate for your wife and a tremendous source of wisdom and encouragement for so many of us on this board. Hang in there.
Brian
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- February 10, 2015 at 2:12 pm
Rick,
Wish I had something to offer other than my prayers. I'm hoping that the imflammation is a sign the pembro is starting to kick in. You have been an amazing advocate for your wife and a tremendous source of wisdom and encouragement for so many of us on this board. Hang in there.
Brian
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- February 10, 2015 at 3:06 pm
Rick,
I wish there is anything to help you. I have been following your story for a while and you are such a wonderful caregiver to your wife.
I hope that Keytruda is working for your wife and all this trouble is just caused by the swelling in the brain due to T-Cells.
You are in my thaughts, Jenny
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- February 10, 2015 at 3:06 pm
Rick,
I wish there is anything to help you. I have been following your story for a while and you are such a wonderful caregiver to your wife.
I hope that Keytruda is working for your wife and all this trouble is just caused by the swelling in the brain due to T-Cells.
You are in my thaughts, Jenny
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- February 10, 2015 at 5:35 pm
Thank you.
indeed after the 3rd Pembrolizumab she had a 'grand mal' seizure and soon after the 4th (with good blood values!) she had this episode. Indeed the last hope is that the Pembro is causing the inflamation (our onc hinted at this as last bit of hope) and size increase (t cells sticking to the tumor) that may reduce soon. Have to hold onto this last opportunity to save her…
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- February 10, 2015 at 5:35 pm
Thank you.
indeed after the 3rd Pembrolizumab she had a 'grand mal' seizure and soon after the 4th (with good blood values!) she had this episode. Indeed the last hope is that the Pembro is causing the inflamation (our onc hinted at this as last bit of hope) and size increase (t cells sticking to the tumor) that may reduce soon. Have to hold onto this last opportunity to save her…
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- February 10, 2015 at 5:35 pm
Thank you.
indeed after the 3rd Pembrolizumab she had a 'grand mal' seizure and soon after the 4th (with good blood values!) she had this episode. Indeed the last hope is that the Pembro is causing the inflamation (our onc hinted at this as last bit of hope) and size increase (t cells sticking to the tumor) that may reduce soon. Have to hold onto this last opportunity to save her…
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- February 10, 2015 at 3:06 pm
Rick,
I wish there is anything to help you. I have been following your story for a while and you are such a wonderful caregiver to your wife.
I hope that Keytruda is working for your wife and all this trouble is just caused by the swelling in the brain due to T-Cells.
You are in my thaughts, Jenny
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- February 10, 2015 at 3:26 pm
Hi Rick
I don't have any advice, due to my relative inexperience. But, I'm a fellow caregiver to a stage 4 spouse and really feel for your situation. The uncertainty about the future is something that I find very hard to deal with, as I'm sure do you. Take care of yourself and know that we're all rooting for you and your wife.
Yasmin
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- February 10, 2015 at 3:26 pm
Hi Rick
I don't have any advice, due to my relative inexperience. But, I'm a fellow caregiver to a stage 4 spouse and really feel for your situation. The uncertainty about the future is something that I find very hard to deal with, as I'm sure do you. Take care of yourself and know that we're all rooting for you and your wife.
Yasmin
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- February 10, 2015 at 3:26 pm
Hi Rick
I don't have any advice, due to my relative inexperience. But, I'm a fellow caregiver to a stage 4 spouse and really feel for your situation. The uncertainty about the future is something that I find very hard to deal with, as I'm sure do you. Take care of yourself and know that we're all rooting for you and your wife.
Yasmin
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- February 10, 2015 at 3:55 pm
Like Ben said it's been over two months since she had resistance to the taf mek combo. It has been documented that after resistance a delay granted usually of several months then try the combo again can have some benefit. Might be enough to help. Also stay on pembro too and hope it works. I think you know more about the panraf better than me. Not sure what else to say that might help.
Artie
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- February 10, 2015 at 3:55 pm
Like Ben said it's been over two months since she had resistance to the taf mek combo. It has been documented that after resistance a delay granted usually of several months then try the combo again can have some benefit. Might be enough to help. Also stay on pembro too and hope it works. I think you know more about the panraf better than me. Not sure what else to say that might help.
Artie
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- February 11, 2015 at 4:20 am
I dont know if this helps but my husband was on yearvoy his 3rd round. While talking one day he started to use the wrong words. Like he siad i cant find,my blood pressure instead of my shoes, he has over 9 mets in his brain did wbr in September and srs a month ago. When they did new scans they found more in his brain… Didnt say how many. They started him on keytruda that day. Now he is more like,himself then he has been. His memory is back. He us back. We think it was swelling from yearvoy because he had one on his chest the grew like crazy over night. Now 1 week later its all but gone. I hope thats whats going on in his head. I will find out next month from the,blood work. I hope that is also what is going on with your wife. God bless you -
- February 11, 2015 at 4:20 am
I dont know if this helps but my husband was on yearvoy his 3rd round. While talking one day he started to use the wrong words. Like he siad i cant find,my blood pressure instead of my shoes, he has over 9 mets in his brain did wbr in September and srs a month ago. When they did new scans they found more in his brain… Didnt say how many. They started him on keytruda that day. Now he is more like,himself then he has been. His memory is back. He us back. We think it was swelling from yearvoy because he had one on his chest the grew like crazy over night. Now 1 week later its all but gone. I hope thats whats going on in his head. I will find out next month from the,blood work. I hope that is also what is going on with your wife. God bless you -
- February 11, 2015 at 4:20 am
I dont know if this helps but my husband was on yearvoy his 3rd round. While talking one day he started to use the wrong words. Like he siad i cant find,my blood pressure instead of my shoes, he has over 9 mets in his brain did wbr in September and srs a month ago. When they did new scans they found more in his brain… Didnt say how many. They started him on keytruda that day. Now he is more like,himself then he has been. His memory is back. He us back. We think it was swelling from yearvoy because he had one on his chest the grew like crazy over night. Now 1 week later its all but gone. I hope thats whats going on in his head. I will find out next month from the,blood work. I hope that is also what is going on with your wife. God bless you
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- February 10, 2015 at 3:55 pm
Like Ben said it's been over two months since she had resistance to the taf mek combo. It has been documented that after resistance a delay granted usually of several months then try the combo again can have some benefit. Might be enough to help. Also stay on pembro too and hope it works. I think you know more about the panraf better than me. Not sure what else to say that might help.
Artie
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- February 11, 2015 at 3:27 pm
Hey Rick,
My heart hurts for you and your wife. I am sorry for such a horrid roller coaster ride. I too, still hope for a delayed response to Keytruda. Pan raf certainly sounds like something to look into. Also, ???? What about adding ipi/Yervoy? The nivo/ipi combo has some of the best results going. In fact, just recently a trial was started with various combinations of nivo, nivo/yervoy, and radiation for patients WITH brain mets!!! So, perhaps that would be an option? I mean you already have two of the pieces in place, albeit with Keytruda. To my knowledge, Nivo has always been the anti-PD1 product added to ipi….but I really can't see that there would be a disadvantage of using Keytruda instead. Just a thought:
I wish you and your wife my best. Celeste
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- February 11, 2015 at 3:27 pm
Hey Rick,
My heart hurts for you and your wife. I am sorry for such a horrid roller coaster ride. I too, still hope for a delayed response to Keytruda. Pan raf certainly sounds like something to look into. Also, ???? What about adding ipi/Yervoy? The nivo/ipi combo has some of the best results going. In fact, just recently a trial was started with various combinations of nivo, nivo/yervoy, and radiation for patients WITH brain mets!!! So, perhaps that would be an option? I mean you already have two of the pieces in place, albeit with Keytruda. To my knowledge, Nivo has always been the anti-PD1 product added to ipi….but I really can't see that there would be a disadvantage of using Keytruda instead. Just a thought:
I wish you and your wife my best. Celeste
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- February 11, 2015 at 10:33 pm
Hi Celeste, was hoping for a reply from you 🙂 thanks!
We have done some of this: brain radiation (gamma knife was not recommendeed by 3 different centers incl expertise center on GK), hip radiation and Keytruda. Adding ipi is definitely an option, and i expect results like with Nivo (they are smiliar as a Monotherapy and the only reason For the combo trial bias toward nivo so far is because opdivo and yervoy are both owned by MBS)… We just need time as we had Keytuda #4 only last week and I'm not sure if we'll have two more weeks with this brain tumor growth. My only hope is that the tumor size increase is the infamous 'swelling/t cells sticking to the tumor before they decrease in size'…
holding on that that idea….
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- February 11, 2015 at 10:33 pm
Hi Celeste, was hoping for a reply from you 🙂 thanks!
We have done some of this: brain radiation (gamma knife was not recommendeed by 3 different centers incl expertise center on GK), hip radiation and Keytruda. Adding ipi is definitely an option, and i expect results like with Nivo (they are smiliar as a Monotherapy and the only reason For the combo trial bias toward nivo so far is because opdivo and yervoy are both owned by MBS)… We just need time as we had Keytuda #4 only last week and I'm not sure if we'll have two more weeks with this brain tumor growth. My only hope is that the tumor size increase is the infamous 'swelling/t cells sticking to the tumor before they decrease in size'…
holding on that that idea….
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- February 11, 2015 at 10:33 pm
Hi Celeste, was hoping for a reply from you 🙂 thanks!
We have done some of this: brain radiation (gamma knife was not recommendeed by 3 different centers incl expertise center on GK), hip radiation and Keytruda. Adding ipi is definitely an option, and i expect results like with Nivo (they are smiliar as a Monotherapy and the only reason For the combo trial bias toward nivo so far is because opdivo and yervoy are both owned by MBS)… We just need time as we had Keytuda #4 only last week and I'm not sure if we'll have two more weeks with this brain tumor growth. My only hope is that the tumor size increase is the infamous 'swelling/t cells sticking to the tumor before they decrease in size'…
holding on that that idea….
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- February 11, 2015 at 3:27 pm
Hey Rick,
My heart hurts for you and your wife. I am sorry for such a horrid roller coaster ride. I too, still hope for a delayed response to Keytruda. Pan raf certainly sounds like something to look into. Also, ???? What about adding ipi/Yervoy? The nivo/ipi combo has some of the best results going. In fact, just recently a trial was started with various combinations of nivo, nivo/yervoy, and radiation for patients WITH brain mets!!! So, perhaps that would be an option? I mean you already have two of the pieces in place, albeit with Keytruda. To my knowledge, Nivo has always been the anti-PD1 product added to ipi….but I really can't see that there would be a disadvantage of using Keytruda instead. Just a thought:
I wish you and your wife my best. Celeste
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- February 26, 2015 at 1:10 pm
So here we are… two weeks after the gave my wife "days to live" and send her home for palliative care. Back home she sleeps better, pain is barely present at 15mg morphine IV per 24hrs, is eating more and more, managed to go out and about in the wheelchair and take showers using a chair. She had new blood work done and it looks pretty OK actually: LDH is still a bit high but much lower than it has been for example.
Next Wednesday our onc will decide whether she's fit enough for Pembro infusion #5.
Strange days, the rollercoaster ride of the past months is now taking place on a daily basis. Some days I feel it's time to kiss her goodbye, on others there is hope … even feels scary to have hope. Hope for what? A few more weeks? Magical recovery towards NED or time for new treatments… Taking it day by day now…
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- February 26, 2015 at 1:10 pm
So here we are… two weeks after the gave my wife "days to live" and send her home for palliative care. Back home she sleeps better, pain is barely present at 15mg morphine IV per 24hrs, is eating more and more, managed to go out and about in the wheelchair and take showers using a chair. She had new blood work done and it looks pretty OK actually: LDH is still a bit high but much lower than it has been for example.
Next Wednesday our onc will decide whether she's fit enough for Pembro infusion #5.
Strange days, the rollercoaster ride of the past months is now taking place on a daily basis. Some days I feel it's time to kiss her goodbye, on others there is hope … even feels scary to have hope. Hope for what? A few more weeks? Magical recovery towards NED or time for new treatments… Taking it day by day now…
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- February 26, 2015 at 1:10 pm
So here we are… two weeks after the gave my wife "days to live" and send her home for palliative care. Back home she sleeps better, pain is barely present at 15mg morphine IV per 24hrs, is eating more and more, managed to go out and about in the wheelchair and take showers using a chair. She had new blood work done and it looks pretty OK actually: LDH is still a bit high but much lower than it has been for example.
Next Wednesday our onc will decide whether she's fit enough for Pembro infusion #5.
Strange days, the rollercoaster ride of the past months is now taking place on a daily basis. Some days I feel it's time to kiss her goodbye, on others there is hope … even feels scary to have hope. Hope for what? A few more weeks? Magical recovery towards NED or time for new treatments… Taking it day by day now…
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- February 26, 2015 at 9:34 pm
Bless you, Rick. I know this is so difficult. I'm glad, though, that she is having good days and I hope that any additional treatment will be the one that pushes her toward NED.
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- February 26, 2015 at 9:34 pm
Bless you, Rick. I know this is so difficult. I'm glad, though, that she is having good days and I hope that any additional treatment will be the one that pushes her toward NED.
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- February 26, 2015 at 9:34 pm
Bless you, Rick. I know this is so difficult. I'm glad, though, that she is having good days and I hope that any additional treatment will be the one that pushes her toward NED.
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- March 10, 2015 at 3:14 pm
Just stopping by to share the latest on my wife's situation…She's been doing better every day since she left the hospital (and was given "days") to live. This is probably due to our re-challenge with the BRAF/MEK combo after a drug holiday of only (!) 2 months.Last Wednesday her blood was great given the circumstances: hemoglobine back to 12.7, LDH down from 1600 to 900 (still above the top end of the healthy bandwidth which is 650), lymphecytes at a good level, red & white blood cells OK. So she got a shot of Xgeva and this Wednesday she'll get an MRI and then the 5th Pembro infusion.Given where she's come from, in terms of MRI that scared everyone and the subsequent decision to move into palliative care, our oncologist called it "miraculous" and the blood results "encouraging". We're not getting ahead of ourselves but given we're saying goodbye a few weeks ago and now my wife's walking outside (with a push cart / rollator) and reading books it's quite a difference indeed. She's also completely off morphine, haldol, dormicum and aacidexam/dexamethasone!We're continuing with immunotherapy in addition to the BRAF/MEK combo. Side effects are unknown but so far non-existent. Our oncologist said he has people in a trial that has a longer run on the BRAF/MEK combo after the drug holiday, which is contrary to logic – but hey, it gives a bit of hope and time for the Keytruda to finally kick in…Keeping faith, wish you the same!Rick -
- March 10, 2015 at 3:14 pm
Just stopping by to share the latest on my wife's situation…She's been doing better every day since she left the hospital (and was given "days") to live. This is probably due to our re-challenge with the BRAF/MEK combo after a drug holiday of only (!) 2 months.Last Wednesday her blood was great given the circumstances: hemoglobine back to 12.7, LDH down from 1600 to 900 (still above the top end of the healthy bandwidth which is 650), lymphecytes at a good level, red & white blood cells OK. So she got a shot of Xgeva and this Wednesday she'll get an MRI and then the 5th Pembro infusion.Given where she's come from, in terms of MRI that scared everyone and the subsequent decision to move into palliative care, our oncologist called it "miraculous" and the blood results "encouraging". We're not getting ahead of ourselves but given we're saying goodbye a few weeks ago and now my wife's walking outside (with a push cart / rollator) and reading books it's quite a difference indeed. She's also completely off morphine, haldol, dormicum and aacidexam/dexamethasone!We're continuing with immunotherapy in addition to the BRAF/MEK combo. Side effects are unknown but so far non-existent. Our oncologist said he has people in a trial that has a longer run on the BRAF/MEK combo after the drug holiday, which is contrary to logic – but hey, it gives a bit of hope and time for the Keytruda to finally kick in…Keeping faith, wish you the same!Rick -
- March 10, 2015 at 3:14 pm
Just stopping by to share the latest on my wife's situation…She's been doing better every day since she left the hospital (and was given "days") to live. This is probably due to our re-challenge with the BRAF/MEK combo after a drug holiday of only (!) 2 months.Last Wednesday her blood was great given the circumstances: hemoglobine back to 12.7, LDH down from 1600 to 900 (still above the top end of the healthy bandwidth which is 650), lymphecytes at a good level, red & white blood cells OK. So she got a shot of Xgeva and this Wednesday she'll get an MRI and then the 5th Pembro infusion.Given where she's come from, in terms of MRI that scared everyone and the subsequent decision to move into palliative care, our oncologist called it "miraculous" and the blood results "encouraging". We're not getting ahead of ourselves but given we're saying goodbye a few weeks ago and now my wife's walking outside (with a push cart / rollator) and reading books it's quite a difference indeed. She's also completely off morphine, haldol, dormicum and aacidexam/dexamethasone!We're continuing with immunotherapy in addition to the BRAF/MEK combo. Side effects are unknown but so far non-existent. Our oncologist said he has people in a trial that has a longer run on the BRAF/MEK combo after the drug holiday, which is contrary to logic – but hey, it gives a bit of hope and time for the Keytruda to finally kick in…Keeping faith, wish you the same!Rick -
- March 12, 2015 at 3:13 pm
Another update…
My wife had a follow up MRI of her brain. First was on 15/1 (day after grand mal seizure and discovery of brain mets), the second on 7/2 (after 3 more seizures and they gave her days to live after all tumors had grown and WBRT had apparently failed).
They onc called is "miraculous" last week and "spectacular" this week that my wife managed to recover from the situation she was in on 7/2. Even yesterday he sighed when he reviewed that old scan. BUT on the latest scan some tumors have significantly decreased, there are no new tumors and most of the edema is gone. There is some bleeding but mostly due to melanoma tumors (apprently a tricky kind of tumor vs other cancer – with loads of veins) bursting due to inflamation.
So it seems that the re-challenge of BRAF/MEK (after only 2 months of drug holiday) worked or that finally Pembro is starting to work. Either way we'll take this result and she had her 5th Pembro infusion yesterday. Full body PET CT in 3 weeks and then either the 6th Pembro or possible a short switch to Ipi.
Will keep you posted.
Oh, CELESTE – more evidence that BRAF/MEK or immunotherapy can help with brain tumors!!!
Rick
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- March 12, 2015 at 3:13 pm
Another update…
My wife had a follow up MRI of her brain. First was on 15/1 (day after grand mal seizure and discovery of brain mets), the second on 7/2 (after 3 more seizures and they gave her days to live after all tumors had grown and WBRT had apparently failed).
They onc called is "miraculous" last week and "spectacular" this week that my wife managed to recover from the situation she was in on 7/2. Even yesterday he sighed when he reviewed that old scan. BUT on the latest scan some tumors have significantly decreased, there are no new tumors and most of the edema is gone. There is some bleeding but mostly due to melanoma tumors (apprently a tricky kind of tumor vs other cancer – with loads of veins) bursting due to inflamation.
So it seems that the re-challenge of BRAF/MEK (after only 2 months of drug holiday) worked or that finally Pembro is starting to work. Either way we'll take this result and she had her 5th Pembro infusion yesterday. Full body PET CT in 3 weeks and then either the 6th Pembro or possible a short switch to Ipi.
Will keep you posted.
Oh, CELESTE – more evidence that BRAF/MEK or immunotherapy can help with brain tumors!!!
Rick
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- March 12, 2015 at 3:13 pm
Another update…
My wife had a follow up MRI of her brain. First was on 15/1 (day after grand mal seizure and discovery of brain mets), the second on 7/2 (after 3 more seizures and they gave her days to live after all tumors had grown and WBRT had apparently failed).
They onc called is "miraculous" last week and "spectacular" this week that my wife managed to recover from the situation she was in on 7/2. Even yesterday he sighed when he reviewed that old scan. BUT on the latest scan some tumors have significantly decreased, there are no new tumors and most of the edema is gone. There is some bleeding but mostly due to melanoma tumors (apprently a tricky kind of tumor vs other cancer – with loads of veins) bursting due to inflamation.
So it seems that the re-challenge of BRAF/MEK (after only 2 months of drug holiday) worked or that finally Pembro is starting to work. Either way we'll take this result and she had her 5th Pembro infusion yesterday. Full body PET CT in 3 weeks and then either the 6th Pembro or possible a short switch to Ipi.
Will keep you posted.
Oh, CELESTE – more evidence that BRAF/MEK or immunotherapy can help with brain tumors!!!
Rick
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