› Forums › General Melanoma Community › good 6 weeks of Opdivo (but can’t shake fear of brain mets)
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Lucky242.
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- June 22, 2015 at 7:16 pm
Hi Forum,
My mom was diagnosed with stage IV in Oct 2014, lung nodule, liver lesion, and (at the time we were told) “too many brain mets to count”. She underwent a series of complications that first month (before starting any treatment) from numerous brain bleedings, resulting in WBR & 2 craniotomies (both to remove 1 bleeding tumor; completed successfully w/2nd surgery). Nov 2014, she began the Taf/Mek combo. Over the last 8 months, we’ve been blessed with only good body CT & brain MRI results, showing tumor shrinkage each time, with brain mets down to less than 10 now. Similarly, her LDH has steadily fallen. Early May, she received 1st Opdivo infusion (continued initially on Taf/Mek, after some side effects that resulted in a hospital visit, she’s been on/off Taf for 4 weeks now). LDH was upper 500s 2 weeks ago when she received most recent nivolumab infusion. We have brain MRI & radiation onc follow-up scheduled 2.5 weeks from now.
We have faith she can get through all of this & the good scans have certainly helped keep us strong. That being said, before she started any treatment, we saw how quickly the brain mets can spiral the disease out of control, and these experiences might be haunting us a bit. Everytime she seems slightly confused or spends an entire day sleeping & not eating, we immediately worry somethings amiss in the brain. We’re aware it takes time for nivolumab to reach the brain and that when she’s off the Taf/Mek combo, she’s in a bit of “free fall”. We’re hoping some voices of reason from the forum can shed some light on:
(1) Others with brain mets, your experiences w/Opdivo? what's to be expected, in terms of mental fogginess, fatigue, etc.? did your melanoma oncologist or radiation oncologist have any useful tips or plans of action to help guard the brain during the first few months of nivolumab? or, if they didn’t, what was their rationale for not doing so? we’ve been told that as long as brain MRIs look good, there’s no use for SRS…naturally, our concern then becomes, "well, how quickly can things turn bad again, as long as there are brain mets that havent been zapped? why wait till its broken, to fix it?” are brain met complications something most oncologsists take precaution against when starting patient on opdivo? and if not, why not??
(2) any insight as to how much of a “ticking bomb” these brain mets might be? we’re all worried that as long as the brain mets are there, they can spontaneously bleed or grow, placing my mom in immediate danger. this fear stems from that fact that before she started treatment, we saw how the brain mets could adversely affect her overnight. perhaps this isn't even realistic…is there any reason to believe that brain mets don’t develop sudden complications, as long as patient is undergoing some sort of treatment (even first 3 months of immuno)? does anyone have experience with sudden brain problems once they switched from BRAF pills to immuno, regardless of progress made on pills alone?
(3) any useful markers to be on the lookout for, to get a sense of how things are going in the brain (in between scans)? For example, if LDH is normal, its unlikely body tumors are growing…can the same be reasoned for brain mets? Are there other (maybe even good) reasons for her mental fogginess? Given her steady brain met shrinkage over 9 months, as well as the trend of the LDH, does this place her in a safe spot for opdivo, in less of a free fall?
Any clarity on all of this would be much appreciated! Would be great to sleep sound tonight OR, at least, start thinking more productively 🙂
Thanks so much!!
- Replies
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- June 22, 2015 at 8:05 pm
*point of clarification: LDH dropped from 812 to 508 (the lowest since starting any treatment, including Taf/Mek pills) since starting Opdivo, with the scale indicating that 618-313 is normal range.
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- June 23, 2015 at 12:10 am
That's odd to hear what some places consider normal LDH is different from place to place. Where I go normal is 100 to 250. My highest has been 840 and finally started dropping down to 359 and is going back up to the 400s so far. Not a very good marker but going down is good.
Artie
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- June 23, 2015 at 12:10 am
That's odd to hear what some places consider normal LDH is different from place to place. Where I go normal is 100 to 250. My highest has been 840 and finally started dropping down to 359 and is going back up to the 400s so far. Not a very good marker but going down is good.
Artie
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- June 23, 2015 at 12:10 am
That's odd to hear what some places consider normal LDH is different from place to place. Where I go normal is 100 to 250. My highest has been 840 and finally started dropping down to 359 and is going back up to the 400s so far. Not a very good marker but going down is good.
Artie
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- June 22, 2015 at 10:48 pm
Brain mets need to be treated aggressively by an expert. Not everyone who treats people with whole brain radiation OR Gamma Knife Radiation (GKR) is the right person to go to. – The first person who preformed Gamma Knife Radiation on my Mom MISSED a tumor, which was left to spread and she had 17 treated almost 4 months after the first treatment at USC by a world expert. – The second Radiation Oncologists that provided treatment was Dr. Eric Chang at USC in Los Angeles, CA. (Nice guy too.)
I tell everyone to get a second or third opinion now. We had a lot of misdiagnosis until we found the right doctors, which I feel totally comfortable with. I also recommend that all doctors be under "one roof" now that my Mom see's all the doctors at the literally under one roof and at one institution I've found that the doctors talk to each other between appointments with each other and her care is much better than when the other hospital was involved with GKR and the neuro team there….
They don't have evidence yet that Opdivo and Gamma Knife Radiation has the same results that Yervoy and Gamma Knife Radiation has had.
You also don't state if you have a melanoma specialist if you don't I'd recommend finding one to at least give you a second and maybe a third. Starting someone out with known brain mets and not including Yervoy and GKR in the discussion sounds a bit strange. Because my Mom was BRAF positive with brain mets we discussed Yervoy and GKR and the Taf/Mek combo, we never discussed Whole Brain Radiation. We chose Yervoy and GKR because we knew if that didn't show signs of working we could fall back on the Taf/Mek combo. She has had terrific results with this combo.
Hope this is helpful to you.
Also, look at this:
Ippilimumab and radiation therapy for melanoma brain metastases
"Four of 10 evaluable patients (40.0%) who received ipilimumab prior to radiotherapy demonstrated a partial response to radiotherapy, compared with two of 22 evaluable patients (9.1%) who did not receive ipilimumab."
http://www.ncbi.nlm.nih.gov/portal/utils/pageresolver.fcgi?recordid=557fb2f2a2d3c19604c9e08f
Study finds Gamma Knife radiosurgery alone yields equal survival outcomes for patients with two to 10 tumors
"The essential criticism of employing Gamma Knife radiosurgery without WBRT for patients with several lesions is that microscopic tumors might go untreated, necessitating salvage stereotactic radiosurgery or an alternative therapy,” he adds. “Thus, WBRT is widely advocated. However, a recent study showed that WBRT is only able to prevent the emergence of new tumors for no more than six months post-treatment. Many patients with brain mets can survive for more than a year, thereby outliving the effects of WBRT."
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- June 23, 2015 at 4:10 am
Thank you! Yes, we have melanoma specialist & radiation onc all under the same roof, you're right, that definitely helps. It's crucial to have doctors you can trust! Glad to hear you found those as well : ) and thank you for the links! the WBR one was new to me & especially encouraging. good luck to your mom & family.
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- June 23, 2015 at 4:10 am
Thank you! Yes, we have melanoma specialist & radiation onc all under the same roof, you're right, that definitely helps. It's crucial to have doctors you can trust! Glad to hear you found those as well : ) and thank you for the links! the WBR one was new to me & especially encouraging. good luck to your mom & family.
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- June 23, 2015 at 4:10 am
Thank you! Yes, we have melanoma specialist & radiation onc all under the same roof, you're right, that definitely helps. It's crucial to have doctors you can trust! Glad to hear you found those as well : ) and thank you for the links! the WBR one was new to me & especially encouraging. good luck to your mom & family.
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- June 22, 2015 at 10:48 pm
Brain mets need to be treated aggressively by an expert. Not everyone who treats people with whole brain radiation OR Gamma Knife Radiation (GKR) is the right person to go to. – The first person who preformed Gamma Knife Radiation on my Mom MISSED a tumor, which was left to spread and she had 17 treated almost 4 months after the first treatment at USC by a world expert. – The second Radiation Oncologists that provided treatment was Dr. Eric Chang at USC in Los Angeles, CA. (Nice guy too.)
I tell everyone to get a second or third opinion now. We had a lot of misdiagnosis until we found the right doctors, which I feel totally comfortable with. I also recommend that all doctors be under "one roof" now that my Mom see's all the doctors at the literally under one roof and at one institution I've found that the doctors talk to each other between appointments with each other and her care is much better than when the other hospital was involved with GKR and the neuro team there….
They don't have evidence yet that Opdivo and Gamma Knife Radiation has the same results that Yervoy and Gamma Knife Radiation has had.
You also don't state if you have a melanoma specialist if you don't I'd recommend finding one to at least give you a second and maybe a third. Starting someone out with known brain mets and not including Yervoy and GKR in the discussion sounds a bit strange. Because my Mom was BRAF positive with brain mets we discussed Yervoy and GKR and the Taf/Mek combo, we never discussed Whole Brain Radiation. We chose Yervoy and GKR because we knew if that didn't show signs of working we could fall back on the Taf/Mek combo. She has had terrific results with this combo.
Hope this is helpful to you.
Also, look at this:
Ippilimumab and radiation therapy for melanoma brain metastases
"Four of 10 evaluable patients (40.0%) who received ipilimumab prior to radiotherapy demonstrated a partial response to radiotherapy, compared with two of 22 evaluable patients (9.1%) who did not receive ipilimumab."
http://www.ncbi.nlm.nih.gov/portal/utils/pageresolver.fcgi?recordid=557fb2f2a2d3c19604c9e08f
Study finds Gamma Knife radiosurgery alone yields equal survival outcomes for patients with two to 10 tumors
"The essential criticism of employing Gamma Knife radiosurgery without WBRT for patients with several lesions is that microscopic tumors might go untreated, necessitating salvage stereotactic radiosurgery or an alternative therapy,” he adds. “Thus, WBRT is widely advocated. However, a recent study showed that WBRT is only able to prevent the emergence of new tumors for no more than six months post-treatment. Many patients with brain mets can survive for more than a year, thereby outliving the effects of WBRT."
-
- June 22, 2015 at 10:48 pm
Brain mets need to be treated aggressively by an expert. Not everyone who treats people with whole brain radiation OR Gamma Knife Radiation (GKR) is the right person to go to. – The first person who preformed Gamma Knife Radiation on my Mom MISSED a tumor, which was left to spread and she had 17 treated almost 4 months after the first treatment at USC by a world expert. – The second Radiation Oncologists that provided treatment was Dr. Eric Chang at USC in Los Angeles, CA. (Nice guy too.)
I tell everyone to get a second or third opinion now. We had a lot of misdiagnosis until we found the right doctors, which I feel totally comfortable with. I also recommend that all doctors be under "one roof" now that my Mom see's all the doctors at the literally under one roof and at one institution I've found that the doctors talk to each other between appointments with each other and her care is much better than when the other hospital was involved with GKR and the neuro team there….
They don't have evidence yet that Opdivo and Gamma Knife Radiation has the same results that Yervoy and Gamma Knife Radiation has had.
You also don't state if you have a melanoma specialist if you don't I'd recommend finding one to at least give you a second and maybe a third. Starting someone out with known brain mets and not including Yervoy and GKR in the discussion sounds a bit strange. Because my Mom was BRAF positive with brain mets we discussed Yervoy and GKR and the Taf/Mek combo, we never discussed Whole Brain Radiation. We chose Yervoy and GKR because we knew if that didn't show signs of working we could fall back on the Taf/Mek combo. She has had terrific results with this combo.
Hope this is helpful to you.
Also, look at this:
Ippilimumab and radiation therapy for melanoma brain metastases
"Four of 10 evaluable patients (40.0%) who received ipilimumab prior to radiotherapy demonstrated a partial response to radiotherapy, compared with two of 22 evaluable patients (9.1%) who did not receive ipilimumab."
http://www.ncbi.nlm.nih.gov/portal/utils/pageresolver.fcgi?recordid=557fb2f2a2d3c19604c9e08f
Study finds Gamma Knife radiosurgery alone yields equal survival outcomes for patients with two to 10 tumors
"The essential criticism of employing Gamma Knife radiosurgery without WBRT for patients with several lesions is that microscopic tumors might go untreated, necessitating salvage stereotactic radiosurgery or an alternative therapy,” he adds. “Thus, WBRT is widely advocated. However, a recent study showed that WBRT is only able to prevent the emergence of new tumors for no more than six months post-treatment. Many patients with brain mets can survive for more than a year, thereby outliving the effects of WBRT."
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- June 22, 2015 at 10:49 pm
Ok. First of all…breathe. Your mom has made it this far and getting onto an immunotherapy right after BRAFi have shrunk things is a very good plan. I am a little unclear about what mets are actually left in the brain, if any…but….here goes.
1. BRAFi, anti-PD1, and even ipi have been shown to have effects in the brain. You can check the post below by cbeckner "newly diagnosed stage IV…." below your thread for many good links. Here is one explaining anti-PD1: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/anti-pd1-in-melanoma-t-cells-brain-and.html Here is one addressing all those treatments for brain mets generally: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/03/should-melanoma-brain-met-patients-be.html
2. If there are no brain mets currently there is no need for "protective" SRS. Additionally, you can't keep radiating the brain unlimitedly or that in itself will damage the brain.
3. LDH going down is a good sign. It is not a terribly perfect predictor….but down is good.
4. Brain mets be symptomatic….or not.
5. Opdivo (and Keytruda…the other anti-PD1 product…for that matter) can make you very tired. Fogginess is not necessarily proven to be a confirmed side effect. Here is a post re side effects: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html
6. Whole brain radiation (as well as various brain surgeries) do, however, sometimes produce some brain side effects and may be the cause of the mental "fogginess" you refer to.
7. On a good note….radiation before or with immunotherapy has shown to improve the effect. Data: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/radiation-for-melanomabetter-when.html
8. I took nivo/opdivo for 2 1/2 years…after a brain and lung met (treated before my start with SRS and surgery respectively)…as well as a new probable brain met at the start of my trial. The met disappeared with no treatment other than Opdivo. I am not the only person for whom this has been true. Here are the results from the ratties in my study: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/my-nivo-opdivo-trial-first-dose-4-years.html
9. Your mom is lucky to have you. Hang in there. This forum will be a great resource for you. Ask questions. Use the search bubble on my blog to look up things. Take care of yourself so that you can be better able to take care of your mom. Wishing you both my best, celeste
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- 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,
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- 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 22, 2015 at 10:49 pm
Ok. First of all…breathe. Your mom has made it this far and getting onto an immunotherapy right after BRAFi have shrunk things is a very good plan. I am a little unclear about what mets are actually left in the brain, if any…but….here goes.
1. BRAFi, anti-PD1, and even ipi have been shown to have effects in the brain. You can check the post below by cbeckner "newly diagnosed stage IV…." below your thread for many good links. Here is one explaining anti-PD1: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/anti-pd1-in-melanoma-t-cells-brain-and.html Here is one addressing all those treatments for brain mets generally: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/03/should-melanoma-brain-met-patients-be.html
2. If there are no brain mets currently there is no need for "protective" SRS. Additionally, you can't keep radiating the brain unlimitedly or that in itself will damage the brain.
3. LDH going down is a good sign. It is not a terribly perfect predictor….but down is good.
4. Brain mets be symptomatic….or not.
5. Opdivo (and Keytruda…the other anti-PD1 product…for that matter) can make you very tired. Fogginess is not necessarily proven to be a confirmed side effect. Here is a post re side effects: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html
6. Whole brain radiation (as well as various brain surgeries) do, however, sometimes produce some brain side effects and may be the cause of the mental "fogginess" you refer to.
7. On a good note….radiation before or with immunotherapy has shown to improve the effect. Data: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/radiation-for-melanomabetter-when.html
8. I took nivo/opdivo for 2 1/2 years…after a brain and lung met (treated before my start with SRS and surgery respectively)…as well as a new probable brain met at the start of my trial. The met disappeared with no treatment other than Opdivo. I am not the only person for whom this has been true. Here are the results from the ratties in my study: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/my-nivo-opdivo-trial-first-dose-4-years.html
9. Your mom is lucky to have you. Hang in there. This forum will be a great resource for you. Ask questions. Use the search bubble on my blog to look up things. Take care of yourself so that you can be better able to take care of your mom. Wishing you both my best, celeste
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- June 22, 2015 at 10:49 pm
Ok. First of all…breathe. Your mom has made it this far and getting onto an immunotherapy right after BRAFi have shrunk things is a very good plan. I am a little unclear about what mets are actually left in the brain, if any…but….here goes.
1. BRAFi, anti-PD1, and even ipi have been shown to have effects in the brain. You can check the post below by cbeckner "newly diagnosed stage IV…." below your thread for many good links. Here is one explaining anti-PD1: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/anti-pd1-in-melanoma-t-cells-brain-and.html Here is one addressing all those treatments for brain mets generally: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/03/should-melanoma-brain-met-patients-be.html
2. If there are no brain mets currently there is no need for "protective" SRS. Additionally, you can't keep radiating the brain unlimitedly or that in itself will damage the brain.
3. LDH going down is a good sign. It is not a terribly perfect predictor….but down is good.
4. Brain mets be symptomatic….or not.
5. Opdivo (and Keytruda…the other anti-PD1 product…for that matter) can make you very tired. Fogginess is not necessarily proven to be a confirmed side effect. Here is a post re side effects: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html
6. Whole brain radiation (as well as various brain surgeries) do, however, sometimes produce some brain side effects and may be the cause of the mental "fogginess" you refer to.
7. On a good note….radiation before or with immunotherapy has shown to improve the effect. Data: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/radiation-for-melanomabetter-when.html
8. I took nivo/opdivo for 2 1/2 years…after a brain and lung met (treated before my start with SRS and surgery respectively)…as well as a new probable brain met at the start of my trial. The met disappeared with no treatment other than Opdivo. I am not the only person for whom this has been true. Here are the results from the ratties in my study: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/my-nivo-opdivo-trial-first-dose-4-years.html
9. Your mom is lucky to have you. Hang in there. This forum will be a great resource for you. Ask questions. Use the search bubble on my blog to look up things. Take care of yourself so that you can be better able to take care of your mom. Wishing you both my best, celeste
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