› Forums › General Melanoma Community › Looking for opinions or shared experience
- This topic has 30 replies, 7 voices, and was last updated 9 years, 11 months ago by
marta010.
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- September 11, 2015 at 9:58 pm
Hello all,
It has been sometime since I've posted but am in a time crunch to make treatment decisions. I am hoping to get some feedback on any experience or thoughts from this very educated group.
Backstory: My husband Jim, 35, primary diagnosis 2007 mole on head, nothing until December 2014 where he presented with headaches and subsequently found innumberable brain tumors, a couple on his lungs and spine; Stage 4 M1c, BRAF and PTEN positive. Did SRS on on largest brian, then WBR alongside Temodar in January/Feburary '15. Started Tafinlar/Mekinist combo with Temodar in March with steroids on and off, and have been on this until present. He had 2 convulsion type seziures, one in April and another in July, put on Keppra. He has a terrible left leg limp due to largest brain tumor on his right side.
He displayed stroke like symptoms Tuesday morning and was admitted to the hospital for tests. Found new brain lesions and determined he had focal seziure. He was getting ready to be discharged and then had a terrible episode where he did not make sense, could not understand commands or answer questions, or knew his family. It took almost 12 hours to get over this and still was not 100% in speech. It was determined he had another focal seziure and has another terrible one where had convulsions and speech/communcation issue again on Thursday evening. He is completely weak, unable to walk, can barely feed himself, is alert but memory is shot, not even knowing the age of his 9 week old daugther or what happened on 9/11 although he is a combat veteran, having served in Iraq and Afghanistan.
His Dr. at MD Anderson communcates with his oncologist here in Louisville, KY and they've determined they want to possibly do SRS on largest brain lesions, wait a little time, then do Keytruda along with Tafinlar/Mek combo, but said if no improvement after 2 doses, that is all they can do for him. Drs believe there is a little to no hope on Keytruda working because of the steriods he is on. However, he is not in a place to stop steriods but possibly wean down.
I am nervous to pursue SRS,as his brain is already completely taxed and inflammed. I am so concerned for his quality of life, what I should do, if he will make it to see Christmas, etc. Thoughts anyone?
-Kristin
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- September 11, 2015 at 10:33 pm
Hi Kristin,
I am so sorry to hear that you and your husband are going through this trying time. My husband is also on a daily Keppra schedule (3,000mg a day) to prevent seizures. He had a grand mal seizure in April and has had a couple breakthrough seizures after. He has had 9 brain mets radiated with SRS – one of which bled after treatment, so I completely understand you being wary of any more stress on your husband's brain when he's already gone through so much. My husband also had severe weakness on his right side from a tumor in his left frontal lobe – there was so much edema around the tumor it caused his right side to become completely paralyzed. He also lost the ability to speak and was unable to communicate right before surgery. The only reason he was able to regain his movement and strength rather quickly (approx. a month) was because of his emergency craniotomy to remove the largest problematic tumor (his cognitive functions and ability to speak were back right after surgery, amazingly). I'm not sure if your husband is a candidate for surgery – have you talked about this at all with your melanoma specialist and a neurosurgeon?
Is your husband currently on dexamethasone for his brain edema? I believe there was a post not too long ago about taking steroids while on Keytruda (or other immunotherapies). I think that the medical field is split on the efficacy of immunotherapy while on steroids. Our melanoma specialist seems to think that steroids will interfere with immunotherapy efficacy, but I know there are others who disagree. Regardless, it sounds like it is important for your husband to start immunotherapy sooner rather than later. When are they planning on starting him on Keytruda? There are others on this board who have had amazing responses to anti-PD1 drugs very quickly, which is an amazing thing.
Again, I am so sorry that you and your husband are having to go through this. You and your husband are in my thoughts and prayers. A better day will come.
Best,
Katie
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- September 11, 2015 at 10:33 pm
Hi Kristin,
I am so sorry to hear that you and your husband are going through this trying time. My husband is also on a daily Keppra schedule (3,000mg a day) to prevent seizures. He had a grand mal seizure in April and has had a couple breakthrough seizures after. He has had 9 brain mets radiated with SRS – one of which bled after treatment, so I completely understand you being wary of any more stress on your husband's brain when he's already gone through so much. My husband also had severe weakness on his right side from a tumor in his left frontal lobe – there was so much edema around the tumor it caused his right side to become completely paralyzed. He also lost the ability to speak and was unable to communicate right before surgery. The only reason he was able to regain his movement and strength rather quickly (approx. a month) was because of his emergency craniotomy to remove the largest problematic tumor (his cognitive functions and ability to speak were back right after surgery, amazingly). I'm not sure if your husband is a candidate for surgery – have you talked about this at all with your melanoma specialist and a neurosurgeon?
Is your husband currently on dexamethasone for his brain edema? I believe there was a post not too long ago about taking steroids while on Keytruda (or other immunotherapies). I think that the medical field is split on the efficacy of immunotherapy while on steroids. Our melanoma specialist seems to think that steroids will interfere with immunotherapy efficacy, but I know there are others who disagree. Regardless, it sounds like it is important for your husband to start immunotherapy sooner rather than later. When are they planning on starting him on Keytruda? There are others on this board who have had amazing responses to anti-PD1 drugs very quickly, which is an amazing thing.
Again, I am so sorry that you and your husband are having to go through this. You and your husband are in my thoughts and prayers. A better day will come.
Best,
Katie
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- September 12, 2015 at 2:28 pm
Hi Katie – thank you so much for responding. I am so sorry your husband also has this terrible disease. I'll pray for you guys. We have been told by two different neurosurgeons that he is not a candidate for surgery because he has so many tumors (15+) that it risks don't outweigh the benefits. However, I'd like to have that as a last resort option. He is on dexamethosone for edema, 16mg/day right now but hoping to wean down to may 8mg before starting Keytruda.
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- September 12, 2015 at 2:28 pm
Hi Katie – thank you so much for responding. I am so sorry your husband also has this terrible disease. I'll pray for you guys. We have been told by two different neurosurgeons that he is not a candidate for surgery because he has so many tumors (15+) that it risks don't outweigh the benefits. However, I'd like to have that as a last resort option. He is on dexamethosone for edema, 16mg/day right now but hoping to wean down to may 8mg before starting Keytruda.
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- September 12, 2015 at 2:28 pm
Hi Katie – thank you so much for responding. I am so sorry your husband also has this terrible disease. I'll pray for you guys. We have been told by two different neurosurgeons that he is not a candidate for surgery because he has so many tumors (15+) that it risks don't outweigh the benefits. However, I'd like to have that as a last resort option. He is on dexamethosone for edema, 16mg/day right now but hoping to wean down to may 8mg before starting Keytruda.
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- September 11, 2015 at 10:33 pm
Hi Kristin,
I am so sorry to hear that you and your husband are going through this trying time. My husband is also on a daily Keppra schedule (3,000mg a day) to prevent seizures. He had a grand mal seizure in April and has had a couple breakthrough seizures after. He has had 9 brain mets radiated with SRS – one of which bled after treatment, so I completely understand you being wary of any more stress on your husband's brain when he's already gone through so much. My husband also had severe weakness on his right side from a tumor in his left frontal lobe – there was so much edema around the tumor it caused his right side to become completely paralyzed. He also lost the ability to speak and was unable to communicate right before surgery. The only reason he was able to regain his movement and strength rather quickly (approx. a month) was because of his emergency craniotomy to remove the largest problematic tumor (his cognitive functions and ability to speak were back right after surgery, amazingly). I'm not sure if your husband is a candidate for surgery – have you talked about this at all with your melanoma specialist and a neurosurgeon?
Is your husband currently on dexamethasone for his brain edema? I believe there was a post not too long ago about taking steroids while on Keytruda (or other immunotherapies). I think that the medical field is split on the efficacy of immunotherapy while on steroids. Our melanoma specialist seems to think that steroids will interfere with immunotherapy efficacy, but I know there are others who disagree. Regardless, it sounds like it is important for your husband to start immunotherapy sooner rather than later. When are they planning on starting him on Keytruda? There are others on this board who have had amazing responses to anti-PD1 drugs very quickly, which is an amazing thing.
Again, I am so sorry that you and your husband are having to go through this. You and your husband are in my thoughts and prayers. A better day will come.
Best,
Katie
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- September 12, 2015 at 1:01 am
Kristin,
If the BRAF/MEK combo works for your husband…good enough! However…if it does not, there is plenty of evidence that steroids, though it would be nice if folks seeking a response from immunotherapy like anti-PD1 or ipi didn't need them, do NOT diminish positive effects! Believing otherwise is old news! Perhaps you can shrare this with your husband's docs:
Hang in there. You husband is lucky to have a love and an advocate like you by his side. I wish you both my best. Celeste
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- September 12, 2015 at 1:01 am
Kristin,
If the BRAF/MEK combo works for your husband…good enough! However…if it does not, there is plenty of evidence that steroids, though it would be nice if folks seeking a response from immunotherapy like anti-PD1 or ipi didn't need them, do NOT diminish positive effects! Believing otherwise is old news! Perhaps you can shrare this with your husband's docs:
Hang in there. You husband is lucky to have a love and an advocate like you by his side. I wish you both my best. Celeste
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- September 12, 2015 at 2:40 pm
Hi Celeste – I was hoping to catch your attention and get your thoughts. Thank you so much for being such a melanoma advocate and all the research and info you post. I am not able to open the link or get it directly from your blog. Let me know if there is a different link as I'd love to see the data.
Thanks!
Kristin
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- September 12, 2015 at 2:40 pm
Hi Celeste – I was hoping to catch your attention and get your thoughts. Thank you so much for being such a melanoma advocate and all the research and info you post. I am not able to open the link or get it directly from your blog. Let me know if there is a different link as I'd love to see the data.
Thanks!
Kristin
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- September 12, 2015 at 3:21 pm
Here you go, Kristin. The link was missing some characters.
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- September 12, 2015 at 3:21 pm
Here you go, Kristin. The link was missing some characters.
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- September 12, 2015 at 7:13 pm
Sorry, Kristen…and thanks Susan,
Tried to post from my ipad…but it doesn't always play right…or perhaps its operator deosn't. Perhaps that post will help. Additionally, if other questions or topics come up you can just go to my blog….google 'chaotically precise' melanoma blog and it usually pops up, then you can use the search bubble at the top left to look up other topics.
Yell out to all of us if you have more questions, concerns, or just need to YELL! Hang in there. Celeste
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- September 12, 2015 at 7:13 pm
Sorry, Kristen…and thanks Susan,
Tried to post from my ipad…but it doesn't always play right…or perhaps its operator deosn't. Perhaps that post will help. Additionally, if other questions or topics come up you can just go to my blog….google 'chaotically precise' melanoma blog and it usually pops up, then you can use the search bubble at the top left to look up other topics.
Yell out to all of us if you have more questions, concerns, or just need to YELL! Hang in there. Celeste
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- September 12, 2015 at 7:13 pm
Sorry, Kristen…and thanks Susan,
Tried to post from my ipad…but it doesn't always play right…or perhaps its operator deosn't. Perhaps that post will help. Additionally, if other questions or topics come up you can just go to my blog….google 'chaotically precise' melanoma blog and it usually pops up, then you can use the search bubble at the top left to look up other topics.
Yell out to all of us if you have more questions, concerns, or just need to YELL! Hang in there. Celeste
-
- September 12, 2015 at 3:21 pm
Here you go, Kristin. The link was missing some characters.
-
- September 12, 2015 at 2:40 pm
Hi Celeste – I was hoping to catch your attention and get your thoughts. Thank you so much for being such a melanoma advocate and all the research and info you post. I am not able to open the link or get it directly from your blog. Let me know if there is a different link as I'd love to see the data.
Thanks!
Kristin
-
- September 12, 2015 at 1:01 am
Kristin,
If the BRAF/MEK combo works for your husband…good enough! However…if it does not, there is plenty of evidence that steroids, though it would be nice if folks seeking a response from immunotherapy like anti-PD1 or ipi didn't need them, do NOT diminish positive effects! Believing otherwise is old news! Perhaps you can shrare this with your husband's docs:
Hang in there. You husband is lucky to have a love and an advocate like you by his side. I wish you both my best. Celeste
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- September 12, 2015 at 4:49 am
I cared for my mom as her consciousness and then her life were taken away by innumerable metastatic brain lesions (secondary to lung cancer). That was back in another era in which we didn't have any of the treatments your husband is receiving. But the decline was probably pretty similar.
In my mom's case, I don't think there was any real suffering, especially with hospice care and the drugs they would administer to her (ultimately morphine). She slowly lost her cognitive abilities, then her awareness, and then ultimately slipped into a coma. She held on for quite a while in that state, until she opened her eyes one day. We called the kids in, and she was able to give them both hugs before passing back into her coma. She died the next day.
Hospice was wonderful, BTW. They were all about helping my mom have a good death — on her terms. They helped her to resolve some deep personal issues that were on her mind. They also helped her with her fear. I can't say enough about what they did for her — and us.
I wish I could tell you something more helpful. My thoughts are with you both! Good luck!
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- September 12, 2015 at 4:49 am
I cared for my mom as her consciousness and then her life were taken away by innumerable metastatic brain lesions (secondary to lung cancer). That was back in another era in which we didn't have any of the treatments your husband is receiving. But the decline was probably pretty similar.
In my mom's case, I don't think there was any real suffering, especially with hospice care and the drugs they would administer to her (ultimately morphine). She slowly lost her cognitive abilities, then her awareness, and then ultimately slipped into a coma. She held on for quite a while in that state, until she opened her eyes one day. We called the kids in, and she was able to give them both hugs before passing back into her coma. She died the next day.
Hospice was wonderful, BTW. They were all about helping my mom have a good death — on her terms. They helped her to resolve some deep personal issues that were on her mind. They also helped her with her fear. I can't say enough about what they did for her — and us.
I wish I could tell you something more helpful. My thoughts are with you both! Good luck!
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- September 12, 2015 at 8:14 pm
My husband also had a similiar melanoma story. Unfortunately he passed away. My opinion….keep doing what you are doing-looking for information, reaching out to others for help and advice and NOT giving up! If what you are hearing doesn't feel right, then keep asking. There is hope like so many on this board will tell you.
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- September 12, 2015 at 8:14 pm
My husband also had a similiar melanoma story. Unfortunately he passed away. My opinion….keep doing what you are doing-looking for information, reaching out to others for help and advice and NOT giving up! If what you are hearing doesn't feel right, then keep asking. There is hope like so many on this board will tell you.
-
- September 12, 2015 at 8:14 pm
My husband also had a similiar melanoma story. Unfortunately he passed away. My opinion….keep doing what you are doing-looking for information, reaching out to others for help and advice and NOT giving up! If what you are hearing doesn't feel right, then keep asking. There is hope like so many on this board will tell you.
-
- September 12, 2015 at 4:49 am
I cared for my mom as her consciousness and then her life were taken away by innumerable metastatic brain lesions (secondary to lung cancer). That was back in another era in which we didn't have any of the treatments your husband is receiving. But the decline was probably pretty similar.
In my mom's case, I don't think there was any real suffering, especially with hospice care and the drugs they would administer to her (ultimately morphine). She slowly lost her cognitive abilities, then her awareness, and then ultimately slipped into a coma. She held on for quite a while in that state, until she opened her eyes one day. We called the kids in, and she was able to give them both hugs before passing back into her coma. She died the next day.
Hospice was wonderful, BTW. They were all about helping my mom have a good death — on her terms. They helped her to resolve some deep personal issues that were on her mind. They also helped her with her fear. I can't say enough about what they did for her — and us.
I wish I could tell you something more helpful. My thoughts are with you both! Good luck!
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Tagged: cutaneous melanoma
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