› Forums › General Melanoma Community › melanoma in spine
- This topic has 24 replies, 6 voices, and was last updated 10 years, 1 month ago by
HopefulOne.
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- February 20, 2014 at 5:01 am
Anybody out there with invasive melanoma in spine? Would appreciate advice/experience with treatment. Husband had no serious symptoms; just short term onset of tingling fingers, mild numbness rt hand, very slight weakness rt leg. CT showed invasive tumor top of spine, C1-C3. Surgery to resect as much as possible Stage IV 3 mo ago. Just finished focused beam radiation which should buy him some time. Considering some type of chemo if qualifies; is BRAF neg. Unknown if this is primary tumor or metastasis. Done extensive on line research, spinal cord mets rarely mentioned. So glad I found this MRF site. So wish I could wave a magic wand and banish this disease from all of you. Tough situations, tough fighters.
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- February 20, 2014 at 6:09 pm
Learn exactly what they say about spinal cord compression for him. Do not wait. Get to MSK or someplace quick. DO NOT do like me and trust the local Drs. Do not believe because you can walk 2 miles a day with no pain that it is going to go away and ipi or something will work. It might but you need the best treatment.
But be careful. If spinal compression too serious then cannot be moved so not much hope of good treatments locally.
If possible see replies to my post. The folks in california have an electric/hl-12 treatment. If not possible like me cause the electric is too close to spinal cord then radiation/hl-2. I'm not really sure of much else for rapid tumor shrinkage.
DO NOT WAIT. GET MOVING.
When talking to the folks say up front about the spinal cord compression status. Otherwise they treat you like everyone else. Keep pushing and they will give you up front answers if there is anything they can do. Crying a little bit seems to help too which is very easy for me right now. Most likely they will want you to have your Dr talk to their Dr. or they will say they have nothing. But the folks at Cali and MSK have been kind/prompt and up front with me so I could not ask for better other than a good treatment of course.
Sorry I'm just a little hysterical. Was supposed to have surgery last Tuesday for this but they can't.
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- February 20, 2014 at 6:09 pm
Learn exactly what they say about spinal cord compression for him. Do not wait. Get to MSK or someplace quick. DO NOT do like me and trust the local Drs. Do not believe because you can walk 2 miles a day with no pain that it is going to go away and ipi or something will work. It might but you need the best treatment.
But be careful. If spinal compression too serious then cannot be moved so not much hope of good treatments locally.
If possible see replies to my post. The folks in california have an electric/hl-12 treatment. If not possible like me cause the electric is too close to spinal cord then radiation/hl-2. I'm not really sure of much else for rapid tumor shrinkage.
DO NOT WAIT. GET MOVING.
When talking to the folks say up front about the spinal cord compression status. Otherwise they treat you like everyone else. Keep pushing and they will give you up front answers if there is anything they can do. Crying a little bit seems to help too which is very easy for me right now. Most likely they will want you to have your Dr talk to their Dr. or they will say they have nothing. But the folks at Cali and MSK have been kind/prompt and up front with me so I could not ask for better other than a good treatment of course.
Sorry I'm just a little hysterical. Was supposed to have surgery last Tuesday for this but they can't.
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- February 21, 2014 at 1:54 am
Crying a little helps is true, to my surprise. When our onc told us my husband's melanoma had spread to liver, spleen and bones, I broke down in tears. Doc then started to look more seriously into clinical trials and specialists, and may have found a novi trial we can get into. When he called to tell me this, and I thanked him, he said, "You cried when we talked last time . . " I have cried a lot, but always tried to be strong at the appointments. I think I'll give that up.
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- February 23, 2014 at 1:39 am
Michele: Best wishes in locating a good trial. Am learning so much from all the posts. As I noted in my response to Kimberly, we are necessarily needing to be very strong advocates for what we believe Dick should be able to have. "Squeaky wheel…." Because we had done a lot of research, established a knowledge base of what/where research being done and had lists of options, we were able to quiz the doctors, get more info out of them and develop some possibilities. As I noted to Kimberly, my husband was "written off" after surgery. I'm not writing him off. Your tears got that doc to reconsider! Also, do read up on the options available, emerging so you can keep asking the good questions. This website has a very good list of trials available. And, many encouraging stories of amazing outcomes. Want your to be one of them.
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- February 23, 2014 at 1:39 am
Michele: Best wishes in locating a good trial. Am learning so much from all the posts. As I noted in my response to Kimberly, we are necessarily needing to be very strong advocates for what we believe Dick should be able to have. "Squeaky wheel…." Because we had done a lot of research, established a knowledge base of what/where research being done and had lists of options, we were able to quiz the doctors, get more info out of them and develop some possibilities. As I noted to Kimberly, my husband was "written off" after surgery. I'm not writing him off. Your tears got that doc to reconsider! Also, do read up on the options available, emerging so you can keep asking the good questions. This website has a very good list of trials available. And, many encouraging stories of amazing outcomes. Want your to be one of them.
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- February 23, 2014 at 1:39 am
Michele: Best wishes in locating a good trial. Am learning so much from all the posts. As I noted in my response to Kimberly, we are necessarily needing to be very strong advocates for what we believe Dick should be able to have. "Squeaky wheel…." Because we had done a lot of research, established a knowledge base of what/where research being done and had lists of options, we were able to quiz the doctors, get more info out of them and develop some possibilities. As I noted to Kimberly, my husband was "written off" after surgery. I'm not writing him off. Your tears got that doc to reconsider! Also, do read up on the options available, emerging so you can keep asking the good questions. This website has a very good list of trials available. And, many encouraging stories of amazing outcomes. Want your to be one of them.
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- February 21, 2014 at 1:54 am
Crying a little helps is true, to my surprise. When our onc told us my husband's melanoma had spread to liver, spleen and bones, I broke down in tears. Doc then started to look more seriously into clinical trials and specialists, and may have found a novi trial we can get into. When he called to tell me this, and I thanked him, he said, "You cried when we talked last time . . " I have cried a lot, but always tried to be strong at the appointments. I think I'll give that up.
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- February 21, 2014 at 1:54 am
Crying a little helps is true, to my surprise. When our onc told us my husband's melanoma had spread to liver, spleen and bones, I broke down in tears. Doc then started to look more seriously into clinical trials and specialists, and may have found a novi trial we can get into. When he called to tell me this, and I thanked him, he said, "You cried when we talked last time . . " I have cried a lot, but always tried to be strong at the appointments. I think I'll give that up.
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- February 20, 2014 at 6:09 pm
Learn exactly what they say about spinal cord compression for him. Do not wait. Get to MSK or someplace quick. DO NOT do like me and trust the local Drs. Do not believe because you can walk 2 miles a day with no pain that it is going to go away and ipi or something will work. It might but you need the best treatment.
But be careful. If spinal compression too serious then cannot be moved so not much hope of good treatments locally.
If possible see replies to my post. The folks in california have an electric/hl-12 treatment. If not possible like me cause the electric is too close to spinal cord then radiation/hl-2. I'm not really sure of much else for rapid tumor shrinkage.
DO NOT WAIT. GET MOVING.
When talking to the folks say up front about the spinal cord compression status. Otherwise they treat you like everyone else. Keep pushing and they will give you up front answers if there is anything they can do. Crying a little bit seems to help too which is very easy for me right now. Most likely they will want you to have your Dr talk to their Dr. or they will say they have nothing. But the folks at Cali and MSK have been kind/prompt and up front with me so I could not ask for better other than a good treatment of course.
Sorry I'm just a little hysterical. Was supposed to have surgery last Tuesday for this but they can't.
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- February 21, 2014 at 6:18 pm
Hi Anita,
My husband had a tumor wrapped around his spinal cord in the lumbar region (can't recall the exact vertebrae) in May 2013. We were naive that melanoma could grow here so we had assumed his symptoms were from degenertive disc disease. Oh, how we learned never to underestimate melanoma again. This made him Stage IV.
Anyway, same as your husband, they resected as much as possible (I believe they said they took out about 60% of the tumor) … the rest was treated with radiation. He then had Yervoy infusions, and managed to get all four in despite a two-week setback from some bowel issues that needed to be treated with steroids.
Since then he's had two PET scans and some MRIs of his back. All in all, everything looks good except an area near his small bowel they are concerned about. An upper GI/small bowel passthrough thankfully showed no lesion but they want to make sure nothing is going on on the outside bowel wall or surrounding tissue so he's getting a follow-up CT scan March 4.
If that comes back clear – I'll believe that the ipi is doing its thing for now.
I'm hoping you find that magic wand … soon!
Take care,
Kimberly-
- February 23, 2014 at 1:21 am
Kimberly (re: melanoma in spine) Thank you for your encouraging response & congratulations on your husband's ++ response to Yervoy (ipilimumab). Best wishes on 03/04 CT.
Could you tell me how much time elapsed between finishing radiation tx & beginning Yervoy? Some advice I'm seeing in some of the entries I'm reading and learning from is to move fast, other to wait and see. My husband is 76, is (was before surgery & getting ~ 70% cervical spine cancer scraped out!) extremely fit, active and healthy. Stamina slower to return but his strength, coordination doing well, 3 mo post op, 1 1/2 wks post radiation. He was essentially 'written off' after surgery and a rocky 4 wk ICU course and sent home on Hospice w 6 mo to live. Now he's driving, doing repairs, up&down stairs, computer work & pacing himself. Gave back all the Hopice stuff: morale booster. We did the advocating to get his tracheotomy out and to get radiation. With his trach out and all that day & night suctioning over, I've had time to go online to do extensive research. Now, we are advocating for a clinical trial (Kaiser offers Yervoy) but don't know if we should slow down. He will need a new complete eval, labs, scan, brain never done. We are with Kaiser with whom active self advocacy is muy importante. It looks true that there are likely good research/treatments coming in regularly and Dick would like to buy enough time to try some. In SF Bay area so have good resources at Stanford and UCSF Med Ctrs. Learning a lot from the other entries. Thx so much to all.
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- February 23, 2014 at 1:21 am
Kimberly (re: melanoma in spine) Thank you for your encouraging response & congratulations on your husband's ++ response to Yervoy (ipilimumab). Best wishes on 03/04 CT.
Could you tell me how much time elapsed between finishing radiation tx & beginning Yervoy? Some advice I'm seeing in some of the entries I'm reading and learning from is to move fast, other to wait and see. My husband is 76, is (was before surgery & getting ~ 70% cervical spine cancer scraped out!) extremely fit, active and healthy. Stamina slower to return but his strength, coordination doing well, 3 mo post op, 1 1/2 wks post radiation. He was essentially 'written off' after surgery and a rocky 4 wk ICU course and sent home on Hospice w 6 mo to live. Now he's driving, doing repairs, up&down stairs, computer work & pacing himself. Gave back all the Hopice stuff: morale booster. We did the advocating to get his tracheotomy out and to get radiation. With his trach out and all that day & night suctioning over, I've had time to go online to do extensive research. Now, we are advocating for a clinical trial (Kaiser offers Yervoy) but don't know if we should slow down. He will need a new complete eval, labs, scan, brain never done. We are with Kaiser with whom active self advocacy is muy importante. It looks true that there are likely good research/treatments coming in regularly and Dick would like to buy enough time to try some. In SF Bay area so have good resources at Stanford and UCSF Med Ctrs. Learning a lot from the other entries. Thx so much to all.
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- February 23, 2014 at 1:21 am
Kimberly (re: melanoma in spine) Thank you for your encouraging response & congratulations on your husband's ++ response to Yervoy (ipilimumab). Best wishes on 03/04 CT.
Could you tell me how much time elapsed between finishing radiation tx & beginning Yervoy? Some advice I'm seeing in some of the entries I'm reading and learning from is to move fast, other to wait and see. My husband is 76, is (was before surgery & getting ~ 70% cervical spine cancer scraped out!) extremely fit, active and healthy. Stamina slower to return but his strength, coordination doing well, 3 mo post op, 1 1/2 wks post radiation. He was essentially 'written off' after surgery and a rocky 4 wk ICU course and sent home on Hospice w 6 mo to live. Now he's driving, doing repairs, up&down stairs, computer work & pacing himself. Gave back all the Hopice stuff: morale booster. We did the advocating to get his tracheotomy out and to get radiation. With his trach out and all that day & night suctioning over, I've had time to go online to do extensive research. Now, we are advocating for a clinical trial (Kaiser offers Yervoy) but don't know if we should slow down. He will need a new complete eval, labs, scan, brain never done. We are with Kaiser with whom active self advocacy is muy importante. It looks true that there are likely good research/treatments coming in regularly and Dick would like to buy enough time to try some. In SF Bay area so have good resources at Stanford and UCSF Med Ctrs. Learning a lot from the other entries. Thx so much to all.
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- February 23, 2014 at 2:39 am
It sounds like you are considering a clinical trial of Yervoy. Is that so? Why? Yervoy is FDA approved for Stage IV; your oncologist can just prescribe it. There are a growing number of reports that radiation enhances the effect of Yervoy so that might be a good choice for your husband.
When my brother had WBR, the radiation oncologist said that the tumor cells would start to die off in 7-10 days and continue to die for another 3-4 weeks. Since the theory is that debris from dead/dying tumor cells is what stimulates the immune response, I assume that now or soon would be a good time to start Yervoy treatments. Just be sure you go to a facility that has a lot of experience administering Yervoy and managing the side effects.
I'm glad that your husband is doing so well. I hope that whatever treatment you try next works for him so that he can continue to amaze his doctors for years to come!
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- February 23, 2014 at 2:39 am
It sounds like you are considering a clinical trial of Yervoy. Is that so? Why? Yervoy is FDA approved for Stage IV; your oncologist can just prescribe it. There are a growing number of reports that radiation enhances the effect of Yervoy so that might be a good choice for your husband.
When my brother had WBR, the radiation oncologist said that the tumor cells would start to die off in 7-10 days and continue to die for another 3-4 weeks. Since the theory is that debris from dead/dying tumor cells is what stimulates the immune response, I assume that now or soon would be a good time to start Yervoy treatments. Just be sure you go to a facility that has a lot of experience administering Yervoy and managing the side effects.
I'm glad that your husband is doing so well. I hope that whatever treatment you try next works for him so that he can continue to amaze his doctors for years to come!
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- February 23, 2014 at 2:39 am
It sounds like you are considering a clinical trial of Yervoy. Is that so? Why? Yervoy is FDA approved for Stage IV; your oncologist can just prescribe it. There are a growing number of reports that radiation enhances the effect of Yervoy so that might be a good choice for your husband.
When my brother had WBR, the radiation oncologist said that the tumor cells would start to die off in 7-10 days and continue to die for another 3-4 weeks. Since the theory is that debris from dead/dying tumor cells is what stimulates the immune response, I assume that now or soon would be a good time to start Yervoy treatments. Just be sure you go to a facility that has a lot of experience administering Yervoy and managing the side effects.
I'm glad that your husband is doing so well. I hope that whatever treatment you try next works for him so that he can continue to amaze his doctors for years to come!
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- March 2, 2014 at 7:02 pm
(I wasn't sure if my reply made its way to you … so I'm posting it here too.)
Hi Anita … Thank you for writing to me and your well wishes with our next test. I think it's awesome you're researching things and fighting alongside with your husband. Knowledge is power as well as trusting and believing in your oncologist. Your husband sounds like he's in the best conditioning for his battle and that means a lot. My husband turns 50 this April and he's very healthy too and I think that plays a big part in his fight. I just asked him and we believe they had him wait one month after radiation to begin his Yervoy infusions. They felt the radiation would kill the rest of the tumor but obviously being Stage IV they know microscopic cancer cells are throughout his body and needed to do something systemically to attack and kill those cells. Yervoy is FDA approved now so I would believe you could start those treatments ASAP without enduring a million clinical trial tests. My understanding is if your insurance doesn't cover the cost…the drug company usually covers it. Obviously your doctor knows your husband's health history so there might be reasons to suggest another treatment. My husband is BRAF positive yet our oncologist wanted to try Yervoy before some of those targeted drugs because they tend not to have as durable responses right now as Yervoy. Good luck with your decision and next steps. Feel free to ask me more questions or keep me updated. Sending you best wishes to you both. Take care, Kimberly
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- March 2, 2014 at 7:02 pm
(I wasn't sure if my reply made its way to you … so I'm posting it here too.)
Hi Anita … Thank you for writing to me and your well wishes with our next test. I think it's awesome you're researching things and fighting alongside with your husband. Knowledge is power as well as trusting and believing in your oncologist. Your husband sounds like he's in the best conditioning for his battle and that means a lot. My husband turns 50 this April and he's very healthy too and I think that plays a big part in his fight. I just asked him and we believe they had him wait one month after radiation to begin his Yervoy infusions. They felt the radiation would kill the rest of the tumor but obviously being Stage IV they know microscopic cancer cells are throughout his body and needed to do something systemically to attack and kill those cells. Yervoy is FDA approved now so I would believe you could start those treatments ASAP without enduring a million clinical trial tests. My understanding is if your insurance doesn't cover the cost…the drug company usually covers it. Obviously your doctor knows your husband's health history so there might be reasons to suggest another treatment. My husband is BRAF positive yet our oncologist wanted to try Yervoy before some of those targeted drugs because they tend not to have as durable responses right now as Yervoy. Good luck with your decision and next steps. Feel free to ask me more questions or keep me updated. Sending you best wishes to you both. Take care, Kimberly
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- March 2, 2014 at 7:02 pm
(I wasn't sure if my reply made its way to you … so I'm posting it here too.)
Hi Anita … Thank you for writing to me and your well wishes with our next test. I think it's awesome you're researching things and fighting alongside with your husband. Knowledge is power as well as trusting and believing in your oncologist. Your husband sounds like he's in the best conditioning for his battle and that means a lot. My husband turns 50 this April and he's very healthy too and I think that plays a big part in his fight. I just asked him and we believe they had him wait one month after radiation to begin his Yervoy infusions. They felt the radiation would kill the rest of the tumor but obviously being Stage IV they know microscopic cancer cells are throughout his body and needed to do something systemically to attack and kill those cells. Yervoy is FDA approved now so I would believe you could start those treatments ASAP without enduring a million clinical trial tests. My understanding is if your insurance doesn't cover the cost…the drug company usually covers it. Obviously your doctor knows your husband's health history so there might be reasons to suggest another treatment. My husband is BRAF positive yet our oncologist wanted to try Yervoy before some of those targeted drugs because they tend not to have as durable responses right now as Yervoy. Good luck with your decision and next steps. Feel free to ask me more questions or keep me updated. Sending you best wishes to you both. Take care, Kimberly
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- February 21, 2014 at 6:18 pm
Hi Anita,
My husband had a tumor wrapped around his spinal cord in the lumbar region (can't recall the exact vertebrae) in May 2013. We were naive that melanoma could grow here so we had assumed his symptoms were from degenertive disc disease. Oh, how we learned never to underestimate melanoma again. This made him Stage IV.
Anyway, same as your husband, they resected as much as possible (I believe they said they took out about 60% of the tumor) … the rest was treated with radiation. He then had Yervoy infusions, and managed to get all four in despite a two-week setback from some bowel issues that needed to be treated with steroids.
Since then he's had two PET scans and some MRIs of his back. All in all, everything looks good except an area near his small bowel they are concerned about. An upper GI/small bowel passthrough thankfully showed no lesion but they want to make sure nothing is going on on the outside bowel wall or surrounding tissue so he's getting a follow-up CT scan March 4.
If that comes back clear – I'll believe that the ipi is doing its thing for now.
I'm hoping you find that magic wand … soon!
Take care,
Kimberly -
- February 21, 2014 at 6:18 pm
Hi Anita,
My husband had a tumor wrapped around his spinal cord in the lumbar region (can't recall the exact vertebrae) in May 2013. We were naive that melanoma could grow here so we had assumed his symptoms were from degenertive disc disease. Oh, how we learned never to underestimate melanoma again. This made him Stage IV.
Anyway, same as your husband, they resected as much as possible (I believe they said they took out about 60% of the tumor) … the rest was treated with radiation. He then had Yervoy infusions, and managed to get all four in despite a two-week setback from some bowel issues that needed to be treated with steroids.
Since then he's had two PET scans and some MRIs of his back. All in all, everything looks good except an area near his small bowel they are concerned about. An upper GI/small bowel passthrough thankfully showed no lesion but they want to make sure nothing is going on on the outside bowel wall or surrounding tissue so he's getting a follow-up CT scan March 4.
If that comes back clear – I'll believe that the ipi is doing its thing for now.
I'm hoping you find that magic wand … soon!
Take care,
Kimberly
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