@lucky242
Forum Replies Created
- Replies
-
-
- September 20, 2016 at 1:51 am
Hi Annie,
The sudden neuro changes can be really rough. Dont get discouraged and stay strong! I've seen similar symptoms in my family member who had brain mets and experienced fevers as a treatment side effect. Symptoms very similar to the ones you described: loss of right arm movement, speech challenges, confusion, little strength, etc. We were explained by a neurosurgeon that if a patient has brain mets and a history of bleedings or tumors, those areas of the brain can become sensitive when the patient develops a fever. The recovery took a week to two but all functions did come back! By the way, increasing (for a short while) steroids (decadron) and Keppra dosage proved helpful for us as well. In reducing the fever and side effects, a bolus of fluids at the hospital worked miracles.
Hoping the same for you guys. Hang in there! And do what you can to keep your dad's spirits up, humor can be a great medicine 🙂
-
- September 20, 2016 at 1:51 am
Hi Annie,
The sudden neuro changes can be really rough. Dont get discouraged and stay strong! I've seen similar symptoms in my family member who had brain mets and experienced fevers as a treatment side effect. Symptoms very similar to the ones you described: loss of right arm movement, speech challenges, confusion, little strength, etc. We were explained by a neurosurgeon that if a patient has brain mets and a history of bleedings or tumors, those areas of the brain can become sensitive when the patient develops a fever. The recovery took a week to two but all functions did come back! By the way, increasing (for a short while) steroids (decadron) and Keppra dosage proved helpful for us as well. In reducing the fever and side effects, a bolus of fluids at the hospital worked miracles.
Hoping the same for you guys. Hang in there! And do what you can to keep your dad's spirits up, humor can be a great medicine 🙂
-
- September 20, 2016 at 1:51 am
Hi Annie,
The sudden neuro changes can be really rough. Dont get discouraged and stay strong! I've seen similar symptoms in my family member who had brain mets and experienced fevers as a treatment side effect. Symptoms very similar to the ones you described: loss of right arm movement, speech challenges, confusion, little strength, etc. We were explained by a neurosurgeon that if a patient has brain mets and a history of bleedings or tumors, those areas of the brain can become sensitive when the patient develops a fever. The recovery took a week to two but all functions did come back! By the way, increasing (for a short while) steroids (decadron) and Keppra dosage proved helpful for us as well. In reducing the fever and side effects, a bolus of fluids at the hospital worked miracles.
Hoping the same for you guys. Hang in there! And do what you can to keep your dad's spirits up, humor can be a great medicine 🙂
-
- September 21, 2016 at 10:30 pm
Hi again Annie.
I'm so sorry your family are going through this. It can be a dark and scary place for sure, I'm happy to hear that you and your family are a light to your dad in this hard time!
Great to hear that he has not experienced any bleedings. From what we were told, seizures can also occur when treatment is working in the brain and edema can result when tumors are shrinking. If you're not seeing new or growing tumors, perhaps this can explain?
We learned that being proactive with brain treatment was extremely important. Even if immunotherapy works in the body, it can take some time to cross the blood brain barrier and work in the brain. Do you have a radiation oncologist onboard your team? Is your dad BRAF positive? Our experience was that having a second treatment that worked quickly in the brain (such as radiation or targeted therapy), to supplement immunotherapy, was beneficial.
Hang in there!
-
- September 21, 2016 at 10:30 pm
Hi again Annie.
I'm so sorry your family are going through this. It can be a dark and scary place for sure, I'm happy to hear that you and your family are a light to your dad in this hard time!
Great to hear that he has not experienced any bleedings. From what we were told, seizures can also occur when treatment is working in the brain and edema can result when tumors are shrinking. If you're not seeing new or growing tumors, perhaps this can explain?
We learned that being proactive with brain treatment was extremely important. Even if immunotherapy works in the body, it can take some time to cross the blood brain barrier and work in the brain. Do you have a radiation oncologist onboard your team? Is your dad BRAF positive? Our experience was that having a second treatment that worked quickly in the brain (such as radiation or targeted therapy), to supplement immunotherapy, was beneficial.
Hang in there!
-
- September 21, 2016 at 10:30 pm
Hi again Annie.
I'm so sorry your family are going through this. It can be a dark and scary place for sure, I'm happy to hear that you and your family are a light to your dad in this hard time!
Great to hear that he has not experienced any bleedings. From what we were told, seizures can also occur when treatment is working in the brain and edema can result when tumors are shrinking. If you're not seeing new or growing tumors, perhaps this can explain?
We learned that being proactive with brain treatment was extremely important. Even if immunotherapy works in the body, it can take some time to cross the blood brain barrier and work in the brain. Do you have a radiation oncologist onboard your team? Is your dad BRAF positive? Our experience was that having a second treatment that worked quickly in the brain (such as radiation or targeted therapy), to supplement immunotherapy, was beneficial.
Hang in there!
-
- December 25, 2015 at 9:02 pm
Thanks so much, Patina.
Yes, her melanoma onc & radiation onc are all under the same roof and work together. The plan has all along been for SRS w/3rd yervoy infusion (in a couple weeks). Given progression, we felt something else that worked systemically was needed to buy time for the immuno combo.
We met with her melanoma onc yesterday and our new plan is: nivo & ipi are in her system. We plan to continue with 3rd bag of ipi. Given the fast progression & onset of symptoms, we have added on low dose Tafinlar & temodar, with the knowledge that taf & temodar both work in the brain. Radiation is still on the table.
So, essentially, we are now attacking from four different angles: nivo, ipi, tafinlar, & temodar. Separetly, these things might not have the best odds, but we are hoping that some magic can occur between the combinations of multiple therapies & the synergies that occur between drugs. If anyone has expeirence or read about this, any encouraging reads would bring a much needed smile!
Tolerating ipi well. Some rash, episodes of diarrhea…right now, mood & fatigue seemt to be biggest hurdles, both of which are starting to affect her appetite (she says shes hungry but seems to have little desire to eat).
-
- December 25, 2015 at 9:02 pm
Thanks so much, Patina.
Yes, her melanoma onc & radiation onc are all under the same roof and work together. The plan has all along been for SRS w/3rd yervoy infusion (in a couple weeks). Given progression, we felt something else that worked systemically was needed to buy time for the immuno combo.
We met with her melanoma onc yesterday and our new plan is: nivo & ipi are in her system. We plan to continue with 3rd bag of ipi. Given the fast progression & onset of symptoms, we have added on low dose Tafinlar & temodar, with the knowledge that taf & temodar both work in the brain. Radiation is still on the table.
So, essentially, we are now attacking from four different angles: nivo, ipi, tafinlar, & temodar. Separetly, these things might not have the best odds, but we are hoping that some magic can occur between the combinations of multiple therapies & the synergies that occur between drugs. If anyone has expeirence or read about this, any encouraging reads would bring a much needed smile!
Tolerating ipi well. Some rash, episodes of diarrhea…right now, mood & fatigue seemt to be biggest hurdles, both of which are starting to affect her appetite (she says shes hungry but seems to have little desire to eat).
-
- December 25, 2015 at 9:02 pm
Thanks so much, Patina.
Yes, her melanoma onc & radiation onc are all under the same roof and work together. The plan has all along been for SRS w/3rd yervoy infusion (in a couple weeks). Given progression, we felt something else that worked systemically was needed to buy time for the immuno combo.
We met with her melanoma onc yesterday and our new plan is: nivo & ipi are in her system. We plan to continue with 3rd bag of ipi. Given the fast progression & onset of symptoms, we have added on low dose Tafinlar & temodar, with the knowledge that taf & temodar both work in the brain. Radiation is still on the table.
So, essentially, we are now attacking from four different angles: nivo, ipi, tafinlar, & temodar. Separetly, these things might not have the best odds, but we are hoping that some magic can occur between the combinations of multiple therapies & the synergies that occur between drugs. If anyone has expeirence or read about this, any encouraging reads would bring a much needed smile!
Tolerating ipi well. Some rash, episodes of diarrhea…right now, mood & fatigue seemt to be biggest hurdles, both of which are starting to affect her appetite (she says shes hungry but seems to have little desire to eat).
-
- June 23, 2015 at 4:18 am
Wow, lots of good stuff. Thank you very much! All your points & links are super helpful & encouraging, exactly what was needed. Liked your blog post that explained that radiation before AND during can have an effect. Have wondered several times if us being six months out of the WBR meant any synergy between this early radiation & the current immuno treatment was ruled out. And liked your point #8 too, of course! good look to you as well & take care,
-
- June 23, 2015 at 4:18 am
Wow, lots of good stuff. Thank you very much! All your points & links are super helpful & encouraging, exactly what was needed. Liked your blog post that explained that radiation before AND during can have an effect. Have wondered several times if us being six months out of the WBR meant any synergy between this early radiation & the current immuno treatment was ruled out. And liked your point #8 too, of course! good look to you as well & take care,
-
- June 23, 2015 at 4:18 am
Wow, lots of good stuff. Thank you very much! All your points & links are super helpful & encouraging, exactly what was needed. Liked your blog post that explained that radiation before AND during can have an effect. Have wondered several times if us being six months out of the WBR meant any synergy between this early radiation & the current immuno treatment was ruled out. And liked your point #8 too, of course! good look to you as well & take care,
-
