@rick1981
Forum Replies Created
- Replies
-
-
- 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
-
- 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
-
- 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
-
- 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 -
- 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…
-
- 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…
-
- 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…
-
- 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….
-
- 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….
-
- 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….
-
