› Forums › General Melanoma Community › Celebrating New Year-Tafinlar/Mekinist with Leptomeningeal Carcinomatosis
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adriana cooper.
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- January 5, 2017 at 5:06 pm
My son is 35, with Stage IV Melanoma (primary stage 1a removed from back 5 years ago). He was just diagnosed in August, 2016 with metastasis to brain, lungs, liver and lymph nodes. About 2 weeks after diagnosis he suddenly couldn't walk and started having severe neurological signs and symptoms. He was found on MRI to have nodules and tumors up and down his spine and was diagnosed with leptomeningeal carcinomatosis. This is basically melanoma meningitis of the cerebral spinal fluid and the prognosis is very grim with median life expectancy of only 10 weeks after this diagnosis.
His oncologist immediately started him on Tafinlar/Mekinist combination. He had been scheduled to begin immunotherapy before this development but that was not possible with the LC. He is having an amazing response to the Taf/Mek!! His most recent spinal mri showed the spinal tumors have "resolved"! Liver nodules are gone too. All other tumors in brain, lung and lymph nodes have shrunk dramatically.
So now the plan is to stay with the Taf/Mek a couple of months longer, then start Yervoy for 12 weeks.
I wanted to share this story to give encouragement that even with the most dire diagnosis, these days there can be hope. My son went for a hike in the mountains a few days ago to celebrate the New Year. He said it took everything he had to hike up the final steep slope, but he made it . . . he made it.
Love, best wishes and hope to you all.
Jill
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- January 6, 2017 at 12:45 am
I am very happy to hear this amazing news about your son!! It makes my heart so incredibly happy. The only thing that made me flinch is when you said his oncologist would keep him on the tafinlar and meknist for a couple months and switch to yervoy. Some patients can be on the tafinlar/meknist combo for years, especially when they have a dramatic or complete response which sounds like the case of your son. Yervoy's response rates are very low, 12-13%- in combo with Opdivo those rates are much higher (58%). Im not a doctor but I do know how hard it can be to find a treatment that works to that magnitude so if it was me I would let it work as long as it can get as big of a response as I could and then if I progress, even minimally, go to immunotherapy. Just something to think about and discuss w the doctor.
i wish your son well and sincerely pray he beats this evil disease. Thank you for sharing his incredible story.
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- January 6, 2017 at 12:45 am
I am very happy to hear this amazing news about your son!! It makes my heart so incredibly happy. The only thing that made me flinch is when you said his oncologist would keep him on the tafinlar and meknist for a couple months and switch to yervoy. Some patients can be on the tafinlar/meknist combo for years, especially when they have a dramatic or complete response which sounds like the case of your son. Yervoy's response rates are very low, 12-13%- in combo with Opdivo those rates are much higher (58%). Im not a doctor but I do know how hard it can be to find a treatment that works to that magnitude so if it was me I would let it work as long as it can get as big of a response as I could and then if I progress, even minimally, go to immunotherapy. Just something to think about and discuss w the doctor.
i wish your son well and sincerely pray he beats this evil disease. Thank you for sharing his incredible story.
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- January 6, 2017 at 1:04 am
Thank you so much for this feedback. He will be on the Yervoy-Opdivo combination. I have read that a small number have a complete response to the Tafinlar/mekinist for 1-2 years, and I don't want to waste any of this period either. But the studies seem to indicate the longest survivors did not even have brain metastasis, let alone the leptomeningeal involvement my son had.
The Dr. says he personally has not had people respond to the Taf/Mek combination for over 6-9 months–my son has been on them so far for 4 months. So I believe we are still in the stage of watching things. I agree if he goes on to have a complete response, I would want him to have more time and watch for even minimal progression. I think one factor is that my son actually came back from being so sick, there is concern that when/if he starts progressing there may not be enough time to get the Yervoy Opdivo started and having an effect.
He is just now able to finally wean off steroids (due to brain swelling) to be able to use the immunotherapy. I think we are in the territory of the unknown here with the extent of his disease last August. Perhaps it would be good to get a second opinion.
Thank you again for this discussion. I am the person doing the reading/researching and this forum is helpful to hear others' experiences. Thank you also for your prayers–they are most appreciated.
Jill
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- January 6, 2017 at 1:04 am
Thank you so much for this feedback. He will be on the Yervoy-Opdivo combination. I have read that a small number have a complete response to the Tafinlar/mekinist for 1-2 years, and I don't want to waste any of this period either. But the studies seem to indicate the longest survivors did not even have brain metastasis, let alone the leptomeningeal involvement my son had.
The Dr. says he personally has not had people respond to the Taf/Mek combination for over 6-9 months–my son has been on them so far for 4 months. So I believe we are still in the stage of watching things. I agree if he goes on to have a complete response, I would want him to have more time and watch for even minimal progression. I think one factor is that my son actually came back from being so sick, there is concern that when/if he starts progressing there may not be enough time to get the Yervoy Opdivo started and having an effect.
He is just now able to finally wean off steroids (due to brain swelling) to be able to use the immunotherapy. I think we are in the territory of the unknown here with the extent of his disease last August. Perhaps it would be good to get a second opinion.
Thank you again for this discussion. I am the person doing the reading/researching and this forum is helpful to hear others' experiences. Thank you also for your prayers–they are most appreciated.
Jill
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- January 6, 2017 at 1:29 am
Im so very glad I didn't offend in any way. You are very informed and your son is very lucky to have you, I mean that from the bottom of my heart.. sometimes the caregivers do most of the research and that saves or prolongs lives everyday. The thing about the taf/mek is that many times doctors will use it as the last treatment option because they know it will more than likely work and will work quickly. The problem is, in both of the phase 3 clinical trials patients were treatment naive, 65-67% had a normal LDH and most had and ecog of 0-1… a very different patient than one who has been through the immunotherapies and on it last line. we just don't know if the sequencing of the medication makes a difference in response or duration of response. In ESMO last year we saw 3 year overall survival which for stage 4 melanoma was a dream only 5 years ago. My long winded point in all this is I wonder if his oncologist uses taf/mek as first line and if he doesn't maybe that's why he hasn't seen it work as long… There is a trial right now that is testing the sequencing.. patients on taf/mek first and if they progress cross over to immunotherapy and vice versa to see if using one before the other impacts how a patient responds.
Now that you clarified he would be doing the combo it makes much more sense. It really has the highest response in the immotherpy space. Sound like his oncologist is being very proactive. There are a lot of people on this forum who have done the combo or are currently doing it so you'll have a lot of support when the time comes.
Im truly sorry your son at the young age of 35 is burdened with this. And from one mother to another I will not only pray for him but I will pray for you as well because I can't imagine what you've been going through too.
I have learned so much from ONCLIVE and if you haven't been all over that site yet, I highly recommend it 🙂
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- January 6, 2017 at 1:29 am
Im so very glad I didn't offend in any way. You are very informed and your son is very lucky to have you, I mean that from the bottom of my heart.. sometimes the caregivers do most of the research and that saves or prolongs lives everyday. The thing about the taf/mek is that many times doctors will use it as the last treatment option because they know it will more than likely work and will work quickly. The problem is, in both of the phase 3 clinical trials patients were treatment naive, 65-67% had a normal LDH and most had and ecog of 0-1… a very different patient than one who has been through the immunotherapies and on it last line. we just don't know if the sequencing of the medication makes a difference in response or duration of response. In ESMO last year we saw 3 year overall survival which for stage 4 melanoma was a dream only 5 years ago. My long winded point in all this is I wonder if his oncologist uses taf/mek as first line and if he doesn't maybe that's why he hasn't seen it work as long… There is a trial right now that is testing the sequencing.. patients on taf/mek first and if they progress cross over to immunotherapy and vice versa to see if using one before the other impacts how a patient responds.
Now that you clarified he would be doing the combo it makes much more sense. It really has the highest response in the immotherpy space. Sound like his oncologist is being very proactive. There are a lot of people on this forum who have done the combo or are currently doing it so you'll have a lot of support when the time comes.
Im truly sorry your son at the young age of 35 is burdened with this. And from one mother to another I will not only pray for him but I will pray for you as well because I can't imagine what you've been going through too.
I have learned so much from ONCLIVE and if you haven't been all over that site yet, I highly recommend it 🙂
-
- January 6, 2017 at 1:29 am
Im so very glad I didn't offend in any way. You are very informed and your son is very lucky to have you, I mean that from the bottom of my heart.. sometimes the caregivers do most of the research and that saves or prolongs lives everyday. The thing about the taf/mek is that many times doctors will use it as the last treatment option because they know it will more than likely work and will work quickly. The problem is, in both of the phase 3 clinical trials patients were treatment naive, 65-67% had a normal LDH and most had and ecog of 0-1… a very different patient than one who has been through the immunotherapies and on it last line. we just don't know if the sequencing of the medication makes a difference in response or duration of response. In ESMO last year we saw 3 year overall survival which for stage 4 melanoma was a dream only 5 years ago. My long winded point in all this is I wonder if his oncologist uses taf/mek as first line and if he doesn't maybe that's why he hasn't seen it work as long… There is a trial right now that is testing the sequencing.. patients on taf/mek first and if they progress cross over to immunotherapy and vice versa to see if using one before the other impacts how a patient responds.
Now that you clarified he would be doing the combo it makes much more sense. It really has the highest response in the immotherpy space. Sound like his oncologist is being very proactive. There are a lot of people on this forum who have done the combo or are currently doing it so you'll have a lot of support when the time comes.
Im truly sorry your son at the young age of 35 is burdened with this. And from one mother to another I will not only pray for him but I will pray for you as well because I can't imagine what you've been going through too.
I have learned so much from ONCLIVE and if you haven't been all over that site yet, I highly recommend it 🙂
-
- January 6, 2017 at 1:04 am
Thank you so much for this feedback. He will be on the Yervoy-Opdivo combination. I have read that a small number have a complete response to the Tafinlar/mekinist for 1-2 years, and I don't want to waste any of this period either. But the studies seem to indicate the longest survivors did not even have brain metastasis, let alone the leptomeningeal involvement my son had.
The Dr. says he personally has not had people respond to the Taf/Mek combination for over 6-9 months–my son has been on them so far for 4 months. So I believe we are still in the stage of watching things. I agree if he goes on to have a complete response, I would want him to have more time and watch for even minimal progression. I think one factor is that my son actually came back from being so sick, there is concern that when/if he starts progressing there may not be enough time to get the Yervoy Opdivo started and having an effect.
He is just now able to finally wean off steroids (due to brain swelling) to be able to use the immunotherapy. I think we are in the territory of the unknown here with the extent of his disease last August. Perhaps it would be good to get a second opinion.
Thank you again for this discussion. I am the person doing the reading/researching and this forum is helpful to hear others' experiences. Thank you also for your prayers–they are most appreciated.
Jill
-
- January 6, 2017 at 12:45 am
I am very happy to hear this amazing news about your son!! It makes my heart so incredibly happy. The only thing that made me flinch is when you said his oncologist would keep him on the tafinlar and meknist for a couple months and switch to yervoy. Some patients can be on the tafinlar/meknist combo for years, especially when they have a dramatic or complete response which sounds like the case of your son. Yervoy's response rates are very low, 12-13%- in combo with Opdivo those rates are much higher (58%). Im not a doctor but I do know how hard it can be to find a treatment that works to that magnitude so if it was me I would let it work as long as it can get as big of a response as I could and then if I progress, even minimally, go to immunotherapy. Just something to think about and discuss w the doctor.
i wish your son well and sincerely pray he beats this evil disease. Thank you for sharing his incredible story.
-
- January 6, 2017 at 5:50 am
Hi Jill, What a fantastic story about your son. This brings so much hope to those that are currently in a dire circumstance with their Mel and also for those of us that have the long road ahead. Thank you so much for sharing. Sending you and your son the very best!!!!!
Jen
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- January 6, 2017 at 5:50 am
Hi Jill, What a fantastic story about your son. This brings so much hope to those that are currently in a dire circumstance with their Mel and also for those of us that have the long road ahead. Thank you so much for sharing. Sending you and your son the very best!!!!!
Jen
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- January 6, 2017 at 5:50 am
Hi Jill, What a fantastic story about your son. This brings so much hope to those that are currently in a dire circumstance with their Mel and also for those of us that have the long road ahead. Thank you so much for sharing. Sending you and your son the very best!!!!!
Jen
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- January 7, 2017 at 7:17 am
Jill, Glad to her your son is doing well on BRAFi. Adriana found relief from the combo within 5 days and it continued to work well for her for the past two months. Five weeks ago she added reintroduction of pembro to the mix which has brought back swelling and muscle pain. Blood work last week showed elevated LD and AST/ALT causing concern. She was directed to stop the BRAFi (which has been the goal any way, so as to preserve their use should other interventions fail) until follow-up. This week the levels have started back to normal. More blood next week.
Was your son's diagnosis made via positive CSF cytology or other methods.
Although it isn't the right option for Adriana at this time I wanted to make sure you are aware of the intratheacal IL-2 treatment being done at MDA in Texas for LMD.
Best wishes
Rob
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- January 7, 2017 at 7:17 am
Jill, Glad to her your son is doing well on BRAFi. Adriana found relief from the combo within 5 days and it continued to work well for her for the past two months. Five weeks ago she added reintroduction of pembro to the mix which has brought back swelling and muscle pain. Blood work last week showed elevated LD and AST/ALT causing concern. She was directed to stop the BRAFi (which has been the goal any way, so as to preserve their use should other interventions fail) until follow-up. This week the levels have started back to normal. More blood next week.
Was your son's diagnosis made via positive CSF cytology or other methods.
Although it isn't the right option for Adriana at this time I wanted to make sure you are aware of the intratheacal IL-2 treatment being done at MDA in Texas for LMD.
Best wishes
Rob
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- January 7, 2017 at 7:17 am
Jill, Glad to her your son is doing well on BRAFi. Adriana found relief from the combo within 5 days and it continued to work well for her for the past two months. Five weeks ago she added reintroduction of pembro to the mix which has brought back swelling and muscle pain. Blood work last week showed elevated LD and AST/ALT causing concern. She was directed to stop the BRAFi (which has been the goal any way, so as to preserve their use should other interventions fail) until follow-up. This week the levels have started back to normal. More blood next week.
Was your son's diagnosis made via positive CSF cytology or other methods.
Although it isn't the right option for Adriana at this time I wanted to make sure you are aware of the intratheacal IL-2 treatment being done at MDA in Texas for LMD.
Best wishes
Rob
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