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- This topic has 27 replies, 6 voices, and was last updated 12 years, 8 months ago by
Marilynn Eiken.
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- December 22, 2012 at 3:42 pm
My husband just had his second craniotomy with tumor resection because of a melanoma brain tumor that grew back in the exact same spot as the last one. We were confident that it was necrosis and not tumor regrowth because all the perfusion studies were cold. Black even, showing no blood flow to the area. It was a huge disappointment to find out it was the melanoma again. He's had an odd course. He started with a skin lesion 3 years ago and then boom..brain tumor two years later. No other issues. We did WBR and gamma knife to spots that were miss
My husband just had his second craniotomy with tumor resection because of a melanoma brain tumor that grew back in the exact same spot as the last one. We were confident that it was necrosis and not tumor regrowth because all the perfusion studies were cold. Black even, showing no blood flow to the area. It was a huge disappointment to find out it was the melanoma again. He's had an odd course. He started with a skin lesion 3 years ago and then boom..brain tumor two years later. No other issues. We did WBR and gamma knife to spots that were missed. Things have been going well but in November they found a very small liver lesion. We were able to ablate the area and thought we were doing well. December MRI showed more changes to the resected area and our neurosurgeon said lets get it our of there. This surgery showed melanoma, about the same size as the first, it was visibly black and invading into a small portion of the dura. Everything was resected but there is a black "film" that was visible following a vessel into the leptomenigeal area of the right frontal lobe. Our neurosurgeon is wonderful and is heavy in the research department, especially immunotherapy, at Mayo in Rochester. He is suggesting to our med onc to start Yervoy. Tye is very frightened. My favor is wondering if any of you survivors out there would email him. He is not the type to reach out, that's my part in this marriage. But I think he would benefit greatly from connecting with someone who is or has experienced this monster. His email is [email protected]. Thank you. Keeping him strong and full of hope is essential.
Marilynn
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- December 22, 2012 at 4:16 pm
Hi, Marilynn. I am so sorry that you and Tye are going through this! I think it is very loving and sensitive of you to reach out for support on behalf of your husband. I don't feel that I can email him directly because I don't have melanoma; I am a caregiver. But I am sure that others on this forum will drop him a line.
You posted previously about the side effects of Leukine and about radiation. Now you mention Yervoy. I conclude that Tye's melanoma is resistant to radiation (sadly, a common situation) and, since you don't mention Zelboarf, I assume that he does not have the BRAF mutation. Is that correct? If so, Yervoy would probably be the best treatment for him unless he can get into a MEK or P1K clinical trial. I don't know if those trials admit people with active brain mets.
It sounds as though you have a good medical team and you are doing all the right things. The only other thing I could suggest is that you consult an oncologist who specializes in melanoma if you haven't done so already (which you probably have). I will keep both of you in my thoughts.
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- December 22, 2012 at 4:16 pm
Hi, Marilynn. I am so sorry that you and Tye are going through this! I think it is very loving and sensitive of you to reach out for support on behalf of your husband. I don't feel that I can email him directly because I don't have melanoma; I am a caregiver. But I am sure that others on this forum will drop him a line.
You posted previously about the side effects of Leukine and about radiation. Now you mention Yervoy. I conclude that Tye's melanoma is resistant to radiation (sadly, a common situation) and, since you don't mention Zelboarf, I assume that he does not have the BRAF mutation. Is that correct? If so, Yervoy would probably be the best treatment for him unless he can get into a MEK or P1K clinical trial. I don't know if those trials admit people with active brain mets.
It sounds as though you have a good medical team and you are doing all the right things. The only other thing I could suggest is that you consult an oncologist who specializes in melanoma if you haven't done so already (which you probably have). I will keep both of you in my thoughts.
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- December 24, 2012 at 5:01 am
Marilynn and Tye:
I don’t know much, but I do know this from my continuing battle with stage IV melanoma—sometimes our disease is ahead of the incredible research going on, and sometimes our doctors are ahead of it. That is their grove, and we can’t poach in it. There is no way for us to spur them on faster than they can go. Here is what I know we can do…we can ratchet up our courage, and keep hope. Once we have real hope, we will regain our stregenth, and live, which gives our doctors time to catch up to the beast.We could get hit by a beer truck and have no battle at all. I prefer this, being in the thick of it, and concentrating on how I am doing today. If we project it will erode hope and stregenth, so why do it?
In the meantime I like the attitude of attack, attack, attack. The Hell with “wait and see”– take the battle to the enemy, go after it with knives, chemical warfare, experimental smart bombs, hit it with radiation, gamma rays, and anything else at hand. The main thing is keep fighting, and keep living, and loving and feeling grateful. -
- December 24, 2012 at 5:01 am
Marilynn and Tye:
I don’t know much, but I do know this from my continuing battle with stage IV melanoma—sometimes our disease is ahead of the incredible research going on, and sometimes our doctors are ahead of it. That is their grove, and we can’t poach in it. There is no way for us to spur them on faster than they can go. Here is what I know we can do…we can ratchet up our courage, and keep hope. Once we have real hope, we will regain our stregenth, and live, which gives our doctors time to catch up to the beast.We could get hit by a beer truck and have no battle at all. I prefer this, being in the thick of it, and concentrating on how I am doing today. If we project it will erode hope and stregenth, so why do it?
In the meantime I like the attitude of attack, attack, attack. The Hell with “wait and see”– take the battle to the enemy, go after it with knives, chemical warfare, experimental smart bombs, hit it with radiation, gamma rays, and anything else at hand. The main thing is keep fighting, and keep living, and loving and feeling grateful. -
- December 24, 2012 at 5:01 am
Marilynn and Tye:
I don’t know much, but I do know this from my continuing battle with stage IV melanoma—sometimes our disease is ahead of the incredible research going on, and sometimes our doctors are ahead of it. That is their grove, and we can’t poach in it. There is no way for us to spur them on faster than they can go. Here is what I know we can do…we can ratchet up our courage, and keep hope. Once we have real hope, we will regain our stregenth, and live, which gives our doctors time to catch up to the beast.We could get hit by a beer truck and have no battle at all. I prefer this, being in the thick of it, and concentrating on how I am doing today. If we project it will erode hope and stregenth, so why do it?
In the meantime I like the attitude of attack, attack, attack. The Hell with “wait and see”– take the battle to the enemy, go after it with knives, chemical warfare, experimental smart bombs, hit it with radiation, gamma rays, and anything else at hand. The main thing is keep fighting, and keep living, and loving and feeling grateful. -
- January 6, 2013 at 10:21 pm
Tye does have a BRAF mutation. The issue had been that he had no systemic involvement and only brain mets. I kept pushing last summer about how it bothered me that we werent doing anything proactive. Our med onc is the "newest member" of the melanoma team at Mayo. He consulted his superiors and thats how we got started on the leukine. The liver tumor came along and was very small and treated with radio ablation. It was felt since that tumor got treated it was most appropriate to continue with leukine. One month later his MRI showed continued growth at the resected tumor bed in his right temporal lobe. They had been watching it and it all coinsided with radiation side effects. Thought it was necrosis all along but low and behold……melanoma regrowth. I know I need to do some more clinical trial investigating. It doesnt look like he will qualify for any of the ones currently at Mayo. I plan to start looking for anything he can qualify while we determine our next step. The 16th of this month we repeat the pet scan and discuss ipi. It's my neuro surgeon that is pushing for the treatment and I'm quite grateful. We will go from there. We have a son that will be graduating from BMT in the Air Force on Jan 25th so we are going to go to that and celebrate his accomplishment and then tackle this damnable disease once again. Thank you for your responses. Sometimes I feel very stuck in my own head with little outlet. MPIP is a godsend for me. I often dont write alot but I read and find great comfort in all the amazing people on here. Patients and caregivers. We are in this together. Bless you all!
Marilynn
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- January 6, 2013 at 10:21 pm
Tye does have a BRAF mutation. The issue had been that he had no systemic involvement and only brain mets. I kept pushing last summer about how it bothered me that we werent doing anything proactive. Our med onc is the "newest member" of the melanoma team at Mayo. He consulted his superiors and thats how we got started on the leukine. The liver tumor came along and was very small and treated with radio ablation. It was felt since that tumor got treated it was most appropriate to continue with leukine. One month later his MRI showed continued growth at the resected tumor bed in his right temporal lobe. They had been watching it and it all coinsided with radiation side effects. Thought it was necrosis all along but low and behold……melanoma regrowth. I know I need to do some more clinical trial investigating. It doesnt look like he will qualify for any of the ones currently at Mayo. I plan to start looking for anything he can qualify while we determine our next step. The 16th of this month we repeat the pet scan and discuss ipi. It's my neuro surgeon that is pushing for the treatment and I'm quite grateful. We will go from there. We have a son that will be graduating from BMT in the Air Force on Jan 25th so we are going to go to that and celebrate his accomplishment and then tackle this damnable disease once again. Thank you for your responses. Sometimes I feel very stuck in my own head with little outlet. MPIP is a godsend for me. I often dont write alot but I read and find great comfort in all the amazing people on here. Patients and caregivers. We are in this together. Bless you all!
Marilynn
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- January 6, 2013 at 10:21 pm
Tye does have a BRAF mutation. The issue had been that he had no systemic involvement and only brain mets. I kept pushing last summer about how it bothered me that we werent doing anything proactive. Our med onc is the "newest member" of the melanoma team at Mayo. He consulted his superiors and thats how we got started on the leukine. The liver tumor came along and was very small and treated with radio ablation. It was felt since that tumor got treated it was most appropriate to continue with leukine. One month later his MRI showed continued growth at the resected tumor bed in his right temporal lobe. They had been watching it and it all coinsided with radiation side effects. Thought it was necrosis all along but low and behold……melanoma regrowth. I know I need to do some more clinical trial investigating. It doesnt look like he will qualify for any of the ones currently at Mayo. I plan to start looking for anything he can qualify while we determine our next step. The 16th of this month we repeat the pet scan and discuss ipi. It's my neuro surgeon that is pushing for the treatment and I'm quite grateful. We will go from there. We have a son that will be graduating from BMT in the Air Force on Jan 25th so we are going to go to that and celebrate his accomplishment and then tackle this damnable disease once again. Thank you for your responses. Sometimes I feel very stuck in my own head with little outlet. MPIP is a godsend for me. I often dont write alot but I read and find great comfort in all the amazing people on here. Patients and caregivers. We are in this together. Bless you all!
Marilynn
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- December 22, 2012 at 4:16 pm
Hi, Marilynn. I am so sorry that you and Tye are going through this! I think it is very loving and sensitive of you to reach out for support on behalf of your husband. I don't feel that I can email him directly because I don't have melanoma; I am a caregiver. But I am sure that others on this forum will drop him a line.
You posted previously about the side effects of Leukine and about radiation. Now you mention Yervoy. I conclude that Tye's melanoma is resistant to radiation (sadly, a common situation) and, since you don't mention Zelboarf, I assume that he does not have the BRAF mutation. Is that correct? If so, Yervoy would probably be the best treatment for him unless he can get into a MEK or P1K clinical trial. I don't know if those trials admit people with active brain mets.
It sounds as though you have a good medical team and you are doing all the right things. The only other thing I could suggest is that you consult an oncologist who specializes in melanoma if you haven't done so already (which you probably have). I will keep both of you in my thoughts.
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- December 22, 2012 at 9:14 pm
Dear Marilynn,
I will be happy to a source of encouragment and hope to your husband. I haven't experienced the same things as your husband Tye but I know we all feel the same fear and know what it is like living with this beast inside you. I pray my message will offer hope and encouragement but also be honest and uplifting for Tye to see that he is no different than the rest, we're all fighting the same battle here and hopefully he can draw strength in knowing he's not alone!
Take care,
Swanee
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- December 22, 2012 at 9:14 pm
Dear Marilynn,
I will be happy to a source of encouragment and hope to your husband. I haven't experienced the same things as your husband Tye but I know we all feel the same fear and know what it is like living with this beast inside you. I pray my message will offer hope and encouragement but also be honest and uplifting for Tye to see that he is no different than the rest, we're all fighting the same battle here and hopefully he can draw strength in knowing he's not alone!
Take care,
Swanee
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- January 6, 2013 at 10:49 pm
Thanks Swanee!
He's a private, quiet kind of man so he may not email you back in length but he has a beautiful heart and will appreciate the connection of someone who can relate to his situation. Thank you soo much!
Marilynn
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- January 6, 2013 at 10:49 pm
Thanks Swanee!
He's a private, quiet kind of man so he may not email you back in length but he has a beautiful heart and will appreciate the connection of someone who can relate to his situation. Thank you soo much!
Marilynn
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- January 6, 2013 at 10:49 pm
Thanks Swanee!
He's a private, quiet kind of man so he may not email you back in length but he has a beautiful heart and will appreciate the connection of someone who can relate to his situation. Thank you soo much!
Marilynn
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- December 22, 2012 at 9:14 pm
Dear Marilynn,
I will be happy to a source of encouragment and hope to your husband. I haven't experienced the same things as your husband Tye but I know we all feel the same fear and know what it is like living with this beast inside you. I pray my message will offer hope and encouragement but also be honest and uplifting for Tye to see that he is no different than the rest, we're all fighting the same battle here and hopefully he can draw strength in knowing he's not alone!
Take care,
Swanee
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- December 23, 2012 at 7:54 am
Hi Marilynn,
I will email him. I just found out this last Tuesday I have a brain met. Its really scary but with treatments that they have now there is hope. Hang in there!
Denise-
- January 6, 2013 at 10:51 pm
Denise,
Thank you for your reply! I pray your treatments with the brain mets goes very well! Best of luck!
Marilynn
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- January 6, 2013 at 10:51 pm
Denise,
Thank you for your reply! I pray your treatments with the brain mets goes very well! Best of luck!
Marilynn
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- January 6, 2013 at 10:51 pm
Denise,
Thank you for your reply! I pray your treatments with the brain mets goes very well! Best of luck!
Marilynn
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- December 25, 2012 at 11:13 am
I am stage 4 and have been NED for over 2 1/2 years. I also used Mayo in Rochester MN until I found a clinical trial, I actually had an appointment a couple weeks ago after being in a clinical trial using anti pd1 in Florida for nearly 2 1/2 years. I don't think I should write him due to my personal opinion of Maoy Clinic in Rochester. I do know they have great surgeons and for that I am thankful. But the oncology department does not have a comprehensive melanoma specialist…They are also very limited in what they can do for melanoma patients. After my recent visit I have decided not to go back to Mayo and find an oncologist who specializes in melanoma as a follow up oncoloigst. Mayo gave me 6-9 months initially and oftered no hope, did not suggest clinical trials etc. I did not have brain mets. I had mine in my chest by my heart and Dr Shen was my surgeon. He was awesome. You are going to need to be very proactive whie at Mayo and ask a lot of questions, as about clinical trials at the NIH and other comprehensive melanoma centers. They do not have many clinical trials at Mayo. Yervoy might help. Has he been tested for the B raf mutation? here is a a link that might help. Nest of Luck, Lynn
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- January 6, 2013 at 10:45 pm
LynnLuc- I feel I am going to need your help. I actually WORK for Mayo as an RN and feel I have had to advocate very strongly for Tye. He wouldnt even have got started on Leukine if I hadn't kept pushing and asking questions. His neurosurgeon is a fantastic doc though and he gives me hope and I like his attitude. It seems my husbands disease is most progressive in his brain without much systemic involvement. Its like the med oncs dont know how to deal with brain mets by itself. I'm not sure how many trials, if any, Tye will qualify for. It seems brain mets is a frequent disqualifying factor. Was mayo good about giving you the records you needed to delve into a trial elsewhere? Where are you from? We are in SE MN very close to the border of Iowa. Did insurance help with any of the trial stuff? How do you manage being involved in a trial so far away from home? I'm going back to work tomorrow so that i don't use up all my PTO if we have to travel elsewhere for treatement. I am very willing to see Tye try the ipi. I know it doesn't work for everyone but I heard some chatter about exclusion criteria for PD1 being you had to have tried ipi first. How is the PD1 different than ipi in your opinion? HOw long can you be on it? When did you start the trial? Dr Markovic is supposed to be the "melanoma guru" of Mayo but he is not our doctor (although he is available as consult to our primary). Who did you end up finding as a conprehensive melanoma specialist? If you prefer you can email me directly at [email protected]. I would really appreiate your input.
Thank you for your reply. You may be just what I need as I have always been ready to "fire" anybody not willing to fight for my husband's life. I advocate for the rights of patients that I don't know and may never see again. I will be a force to be reckoned with for Tye. The needs of the patient come first. Mayo model…..I live it, serve it, breathe it. I'll do everything I can for Tye. Thanks again!
Marilynn
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- January 6, 2013 at 10:45 pm
LynnLuc- I feel I am going to need your help. I actually WORK for Mayo as an RN and feel I have had to advocate very strongly for Tye. He wouldnt even have got started on Leukine if I hadn't kept pushing and asking questions. His neurosurgeon is a fantastic doc though and he gives me hope and I like his attitude. It seems my husbands disease is most progressive in his brain without much systemic involvement. Its like the med oncs dont know how to deal with brain mets by itself. I'm not sure how many trials, if any, Tye will qualify for. It seems brain mets is a frequent disqualifying factor. Was mayo good about giving you the records you needed to delve into a trial elsewhere? Where are you from? We are in SE MN very close to the border of Iowa. Did insurance help with any of the trial stuff? How do you manage being involved in a trial so far away from home? I'm going back to work tomorrow so that i don't use up all my PTO if we have to travel elsewhere for treatement. I am very willing to see Tye try the ipi. I know it doesn't work for everyone but I heard some chatter about exclusion criteria for PD1 being you had to have tried ipi first. How is the PD1 different than ipi in your opinion? HOw long can you be on it? When did you start the trial? Dr Markovic is supposed to be the "melanoma guru" of Mayo but he is not our doctor (although he is available as consult to our primary). Who did you end up finding as a conprehensive melanoma specialist? If you prefer you can email me directly at [email protected]. I would really appreiate your input.
Thank you for your reply. You may be just what I need as I have always been ready to "fire" anybody not willing to fight for my husband's life. I advocate for the rights of patients that I don't know and may never see again. I will be a force to be reckoned with for Tye. The needs of the patient come first. Mayo model…..I live it, serve it, breathe it. I'll do everything I can for Tye. Thanks again!
Marilynn
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- January 6, 2013 at 10:45 pm
LynnLuc- I feel I am going to need your help. I actually WORK for Mayo as an RN and feel I have had to advocate very strongly for Tye. He wouldnt even have got started on Leukine if I hadn't kept pushing and asking questions. His neurosurgeon is a fantastic doc though and he gives me hope and I like his attitude. It seems my husbands disease is most progressive in his brain without much systemic involvement. Its like the med oncs dont know how to deal with brain mets by itself. I'm not sure how many trials, if any, Tye will qualify for. It seems brain mets is a frequent disqualifying factor. Was mayo good about giving you the records you needed to delve into a trial elsewhere? Where are you from? We are in SE MN very close to the border of Iowa. Did insurance help with any of the trial stuff? How do you manage being involved in a trial so far away from home? I'm going back to work tomorrow so that i don't use up all my PTO if we have to travel elsewhere for treatement. I am very willing to see Tye try the ipi. I know it doesn't work for everyone but I heard some chatter about exclusion criteria for PD1 being you had to have tried ipi first. How is the PD1 different than ipi in your opinion? HOw long can you be on it? When did you start the trial? Dr Markovic is supposed to be the "melanoma guru" of Mayo but he is not our doctor (although he is available as consult to our primary). Who did you end up finding as a conprehensive melanoma specialist? If you prefer you can email me directly at [email protected]. I would really appreiate your input.
Thank you for your reply. You may be just what I need as I have always been ready to "fire" anybody not willing to fight for my husband's life. I advocate for the rights of patients that I don't know and may never see again. I will be a force to be reckoned with for Tye. The needs of the patient come first. Mayo model…..I live it, serve it, breathe it. I'll do everything I can for Tye. Thanks again!
Marilynn
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- December 25, 2012 at 11:13 am
I am stage 4 and have been NED for over 2 1/2 years. I also used Mayo in Rochester MN until I found a clinical trial, I actually had an appointment a couple weeks ago after being in a clinical trial using anti pd1 in Florida for nearly 2 1/2 years. I don't think I should write him due to my personal opinion of Maoy Clinic in Rochester. I do know they have great surgeons and for that I am thankful. But the oncology department does not have a comprehensive melanoma specialist…They are also very limited in what they can do for melanoma patients. After my recent visit I have decided not to go back to Mayo and find an oncologist who specializes in melanoma as a follow up oncoloigst. Mayo gave me 6-9 months initially and oftered no hope, did not suggest clinical trials etc. I did not have brain mets. I had mine in my chest by my heart and Dr Shen was my surgeon. He was awesome. You are going to need to be very proactive whie at Mayo and ask a lot of questions, as about clinical trials at the NIH and other comprehensive melanoma centers. They do not have many clinical trials at Mayo. Yervoy might help. Has he been tested for the B raf mutation? here is a a link that might help. Nest of Luck, Lynn
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- December 25, 2012 at 11:13 am
I am stage 4 and have been NED for over 2 1/2 years. I also used Mayo in Rochester MN until I found a clinical trial, I actually had an appointment a couple weeks ago after being in a clinical trial using anti pd1 in Florida for nearly 2 1/2 years. I don't think I should write him due to my personal opinion of Maoy Clinic in Rochester. I do know they have great surgeons and for that I am thankful. But the oncology department does not have a comprehensive melanoma specialist…They are also very limited in what they can do for melanoma patients. After my recent visit I have decided not to go back to Mayo and find an oncologist who specializes in melanoma as a follow up oncoloigst. Mayo gave me 6-9 months initially and oftered no hope, did not suggest clinical trials etc. I did not have brain mets. I had mine in my chest by my heart and Dr Shen was my surgeon. He was awesome. You are going to need to be very proactive whie at Mayo and ask a lot of questions, as about clinical trials at the NIH and other comprehensive melanoma centers. They do not have many clinical trials at Mayo. Yervoy might help. Has he been tested for the B raf mutation? here is a a link that might help. Nest of Luck, Lynn
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