› Forums › General Melanoma Community › Leptomeningeal metastases
- This topic has 45 replies, 8 voices, and was last updated 8 years, 5 months ago by
kylez.
- Post
-
- November 27, 2015 at 7:46 pm
Hi Everyone,
In October 2013 I was diagnosed with melanoma stage 4 with many metastases in my liver and both ovaries. I started to participate in clinical trials ( Nivo/Yervoy). Everything went really well, without any side effects and my CT scans were showing that liver metastases are not spreading and one on the ovary is getting smaller. Although there was a small tumor in my spine, the doctors told me there was nothing to worry – the treatment is doing its job.
In April 2015 i was rushed to ER with severe pain in my right side of the hip and the whole leg. CT didnt show anything. I was on strong painkillers for two months and begged to do MRI. MRI showed I had new tumor on my hip bone. I was withdrawn from the trial and told I was getting Ipi. In July I had a radiation on my hip and spine tumors. At the same time headaches started and there was constant noise in my left ear. MRI of the brain showed one tiny metastasis which was treated by cyber knife and I also got treatment for vertigo. Then my doc decided to put me on Keytruda.
At the end of July my headahces got worse, I started to have double vision, nausea, lost control of my left arm and almost couldnt walk. The urgent MRI of the brain was performed and my oncologist told me I had leptomeningeal metastases . I stopped Keytruda and switched to Tafinlar/ Mekinist combination which stabilized my situation.
My oncologist refused to do lumbur puncture saying there is no point in it. I was told this is terminal complication and there is no cure. When Tafinalr/ Mekinist combination stops working, there is nothing they can do.
I live in Israel and the medicine here is considered to be one of the best in the world. But I feel that my doctors gave up on me. I read that many patients with leptomeningeal complication in US are getting brain radiation and spinal chemo and other treatments. I am 31 year old woman, my body is still fighting. I dont understand why my oncologist doesnt want to do anything. I feel very desperate and depressed since the diagnosis. Because of the high fevers and other side effects I had to quit my job and now the only thing I am doing is looking for any treatment in the internet. But there is almost no information on leptomeningeal metastases in melanoma.
Please let me know are there any options? Can I ask my doc to go back to Keytruda? Is there anyone with the same diagnosis? please help me, I am very desperate
- Replies
-
-
- November 27, 2015 at 7:56 pm
I don't have an answer for you but I just wanted to say I am so sorry to hear and my prayers are with you,m. Don't ever give up and if u are able to seek another doctor and see what they say,
-
- November 27, 2015 at 8:31 pm
Your doc probably gave up because few doc's treat it. As you probably have heard here in the states on this forum a person is getting the spine chemo and stuff. So as you probably already know that is happening at md Anderson in Houston.
So in my opinion if there is any way you can get setup to see the doc there that does it and somehow get there that seems to me anyway your best way to go. But other than reading a few posts quite awhile back about it I really don't know.
I can't remember the doc there that used to do it. I think it started with a p. Like dr Pepos or something. A lady doc has since replaced him but I don't remember her name.
Good luck.
Artie
-
- November 27, 2015 at 8:31 pm
Your doc probably gave up because few doc's treat it. As you probably have heard here in the states on this forum a person is getting the spine chemo and stuff. So as you probably already know that is happening at md Anderson in Houston.
So in my opinion if there is any way you can get setup to see the doc there that does it and somehow get there that seems to me anyway your best way to go. But other than reading a few posts quite awhile back about it I really don't know.
I can't remember the doc there that used to do it. I think it started with a p. Like dr Pepos or something. A lady doc has since replaced him but I don't remember her name.
Good luck.
Artie
-
- November 27, 2015 at 8:31 pm
Your doc probably gave up because few doc's treat it. As you probably have heard here in the states on this forum a person is getting the spine chemo and stuff. So as you probably already know that is happening at md Anderson in Houston.
So in my opinion if there is any way you can get setup to see the doc there that does it and somehow get there that seems to me anyway your best way to go. But other than reading a few posts quite awhile back about it I really don't know.
I can't remember the doc there that used to do it. I think it started with a p. Like dr Pepos or something. A lady doc has since replaced him but I don't remember her name.
Good luck.
Artie
-
- November 27, 2015 at 10:49 pm
Or maybe it is Papas. Here is a thread:
"I cannot answer your question in regards to temodar, but my husband has leptomeningeal disease too. He is being treated at MD Anderson by Dr. Papa with intrathecal IL2.
He is the only doctor in the world who does this treatment. My husband was given the option of WBR at his previous treatment center, and we were told it was only palliative so we headed straight for MDA. It is a ROUGH treatment but it has a pretty good success rate & Dr Papa has patients as many as 20 years out with this treatment. If you want more info please let me know!"
-
- November 28, 2015 at 2:21 pm
Hi Kylez,
I really appreciate your help and would love to get more information. I have already sent a request to Md Anderson. Hopefully they will get back to me soon. Time is precious.
How long is the treatment? How is your husband doing? Does he have many side effects?
Thank you, Maria
-
- November 28, 2015 at 2:21 pm
Hi Kylez,
I really appreciate your help and would love to get more information. I have already sent a request to Md Anderson. Hopefully they will get back to me soon. Time is precious.
How long is the treatment? How is your husband doing? Does he have many side effects?
Thank you, Maria
-
- November 28, 2015 at 2:21 pm
Hi Kylez,
I really appreciate your help and would love to get more information. I have already sent a request to Md Anderson. Hopefully they will get back to me soon. Time is precious.
How long is the treatment? How is your husband doing? Does he have many side effects?
Thank you, Maria
-
- November 27, 2015 at 10:49 pm
Or maybe it is Papas. Here is a thread:
"I cannot answer your question in regards to temodar, but my husband has leptomeningeal disease too. He is being treated at MD Anderson by Dr. Papa with intrathecal IL2.
He is the only doctor in the world who does this treatment. My husband was given the option of WBR at his previous treatment center, and we were told it was only palliative so we headed straight for MDA. It is a ROUGH treatment but it has a pretty good success rate & Dr Papa has patients as many as 20 years out with this treatment. If you want more info please let me know!"
-
- November 27, 2015 at 10:49 pm
Or maybe it is Papas. Here is a thread:
"I cannot answer your question in regards to temodar, but my husband has leptomeningeal disease too. He is being treated at MD Anderson by Dr. Papa with intrathecal IL2.
He is the only doctor in the world who does this treatment. My husband was given the option of WBR at his previous treatment center, and we were told it was only palliative so we headed straight for MDA. It is a ROUGH treatment but it has a pretty good success rate & Dr Papa has patients as many as 20 years out with this treatment. If you want more info please let me know!"
-
- November 28, 2015 at 1:33 am
So sorry for all that you are going through. Here is a post I put up reagarding an article about intrathecal IL2 at MDAnderson: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/intrathecal-il2-for-melanoma-patients.html
Another case study reported good results for patients with leptomeningeal disease who had intrathecal IL2 followed by TIL.
I realize that this is a very difficult situation and access to these options is difficult indeed. Hang in there. I very much admire your spirit. Yours, celeste
-
- November 28, 2015 at 1:33 am
So sorry for all that you are going through. Here is a post I put up reagarding an article about intrathecal IL2 at MDAnderson: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/intrathecal-il2-for-melanoma-patients.html
Another case study reported good results for patients with leptomeningeal disease who had intrathecal IL2 followed by TIL.
I realize that this is a very difficult situation and access to these options is difficult indeed. Hang in there. I very much admire your spirit. Yours, celeste
-
- November 28, 2015 at 1:33 am
So sorry for all that you are going through. Here is a post I put up reagarding an article about intrathecal IL2 at MDAnderson: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/intrathecal-il2-for-melanoma-patients.html
Another case study reported good results for patients with leptomeningeal disease who had intrathecal IL2 followed by TIL.
I realize that this is a very difficult situation and access to these options is difficult indeed. Hang in there. I very much admire your spirit. Yours, celeste
-
- November 28, 2015 at 1:34 am
So sorry for all that you are going through. Here is a post I put up reagarding an article about intrathecal IL2 at MDAnderson: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/intrathecal-il2-for-melanoma-patients.html
Another case study reported good results for patients with leptomeningeal disease who had intrathecal IL2 followed by TIL.
I realize that this is a very difficult situation and access to these options is difficult indeed. Hang in there. I very much admire your spirit. Yours, celeste
-
- November 28, 2015 at 1:34 am
So sorry for all that you are going through. Here is a post I put up reagarding an article about intrathecal IL2 at MDAnderson: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/intrathecal-il2-for-melanoma-patients.html
Another case study reported good results for patients with leptomeningeal disease who had intrathecal IL2 followed by TIL.
I realize that this is a very difficult situation and access to these options is difficult indeed. Hang in there. I very much admire your spirit. Yours, celeste
-
- November 28, 2015 at 1:34 am
So sorry for all that you are going through. Here is a post I put up reagarding an article about intrathecal IL2 at MDAnderson: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/intrathecal-il2-for-melanoma-patients.html
Another case study reported good results for patients with leptomeningeal disease who had intrathecal IL2 followed by TIL.
I realize that this is a very difficult situation and access to these options is difficult indeed. Hang in there. I very much admire your spirit. Yours, celeste
-
- November 28, 2015 at 4:06 pm
Your story is heart breaking, but if you feel you are healthy enough you should follow through with MD Anderson to see if they can treat you. If you come for a visit you may want to contact the American Cancer Society http://www.cancer.org/ . They have programs with airlines and hotels for cheap rates. I was once told if I book my room 2 weeks in advance for my chemo treatments the room rate was like $12 a night at the Residents Inn near my hospital. MD Anderson is a large campus and has many hotels on campus and close by with free transportation to and for treatment. I only offer this as a suggestion to help you with costs since you would need stay near by the hospital for treatment. I have no idea if your insurance in Israel would consider paying for treatment in the USA. I hope it does.
Good luck and God Speed.
Tom
-
- November 28, 2015 at 4:06 pm
Your story is heart breaking, but if you feel you are healthy enough you should follow through with MD Anderson to see if they can treat you. If you come for a visit you may want to contact the American Cancer Society http://www.cancer.org/ . They have programs with airlines and hotels for cheap rates. I was once told if I book my room 2 weeks in advance for my chemo treatments the room rate was like $12 a night at the Residents Inn near my hospital. MD Anderson is a large campus and has many hotels on campus and close by with free transportation to and for treatment. I only offer this as a suggestion to help you with costs since you would need stay near by the hospital for treatment. I have no idea if your insurance in Israel would consider paying for treatment in the USA. I hope it does.
Good luck and God Speed.
Tom
-
- November 30, 2015 at 4:09 pm
Maria, in the U.S. it is now considered "open season" where one can change insurance plans for any reason. Is there any possibility you could find different insurance that would cover treatment in the U.S.?
-
- November 30, 2015 at 4:09 pm
Maria, in the U.S. it is now considered "open season" where one can change insurance plans for any reason. Is there any possibility you could find different insurance that would cover treatment in the U.S.?
-
- November 30, 2015 at 4:09 pm
Maria, in the U.S. it is now considered "open season" where one can change insurance plans for any reason. Is there any possibility you could find different insurance that would cover treatment in the U.S.?
-
- November 28, 2015 at 4:06 pm
Your story is heart breaking, but if you feel you are healthy enough you should follow through with MD Anderson to see if they can treat you. If you come for a visit you may want to contact the American Cancer Society http://www.cancer.org/ . They have programs with airlines and hotels for cheap rates. I was once told if I book my room 2 weeks in advance for my chemo treatments the room rate was like $12 a night at the Residents Inn near my hospital. MD Anderson is a large campus and has many hotels on campus and close by with free transportation to and for treatment. I only offer this as a suggestion to help you with costs since you would need stay near by the hospital for treatment. I have no idea if your insurance in Israel would consider paying for treatment in the USA. I hope it does.
Good luck and God Speed.
Tom
-
- December 7, 2015 at 1:03 am
My husband is being treated at MDAnderson for liptomeningeal (LMD) he started treatment 12-2011 Dr Papadopoulos (Dr Papa is what we call him) started this treatment but has retired Dr Isabella Glitza was trained by Dr Papa in this treatment and has taken over Dr Papas LMD cases. My husband had LMD in his spine he did radiation to the area and on the last radiation treatment he went to surgery to have an ommaya placed this is how they check the spinal fluid (CFS) and administer the IL2. After the ommaya was placed he had to have a flow study done to make sure the ommaya was working and that the IL2 would circulate the CSF . When the flow test was done and showed to flow he was admitted to the hospital for a month they call this induction. He was given the IL2 serval times a week if he could take it this dose of IL2 is very small. It was not easy for him he was still a strong man when he started which probably helped him. Some of the Drs in the melanoma department do not recommend this treatment because it is so toxic. After induction is done Mickey had to have a treatment once a week for four weeks and then every two weeks four times then three weeks four times and so on they have some people that go every 3 months. Mickey has a treatment every 8 weeks now. When he hit bumps in the road the treatment would stop and he would be moved back. Along the way he developed hydrocephalus (which is a side effect of the treatment) a shunt had to be placed with a new ommaya and a new flow test. This is just one of many bumps in this journey. We live 8 1/2 hours from Houston and will leave this weekend for scans and Dr appointments and a treatment for the LMD with this treatment he is admitted to the hospital for observation. When the melanoma was found it was in his brain, right lung, and his 7th left rib, he has done 1 1/2 rounds of IPI and is currently on zelboraf. He has had whole brain radiation, 2 gamma knife at two different times to brain tumors, cryoablation to his lung tumor and rib tumor, had his appendix removed, and this August his abdomen CT showed he had a mass in his small bowel that was resectioned. The CT also show two lymph node in his abdomen that were enlarged the surgeon was unable to remove because of the location.
If you have any questions my email is [email protected] I will help you with what I know.
Blessings from Arkansas
Samantha
-
- December 7, 2015 at 1:03 am
My husband is being treated at MDAnderson for liptomeningeal (LMD) he started treatment 12-2011 Dr Papadopoulos (Dr Papa is what we call him) started this treatment but has retired Dr Isabella Glitza was trained by Dr Papa in this treatment and has taken over Dr Papas LMD cases. My husband had LMD in his spine he did radiation to the area and on the last radiation treatment he went to surgery to have an ommaya placed this is how they check the spinal fluid (CFS) and administer the IL2. After the ommaya was placed he had to have a flow study done to make sure the ommaya was working and that the IL2 would circulate the CSF . When the flow test was done and showed to flow he was admitted to the hospital for a month they call this induction. He was given the IL2 serval times a week if he could take it this dose of IL2 is very small. It was not easy for him he was still a strong man when he started which probably helped him. Some of the Drs in the melanoma department do not recommend this treatment because it is so toxic. After induction is done Mickey had to have a treatment once a week for four weeks and then every two weeks four times then three weeks four times and so on they have some people that go every 3 months. Mickey has a treatment every 8 weeks now. When he hit bumps in the road the treatment would stop and he would be moved back. Along the way he developed hydrocephalus (which is a side effect of the treatment) a shunt had to be placed with a new ommaya and a new flow test. This is just one of many bumps in this journey. We live 8 1/2 hours from Houston and will leave this weekend for scans and Dr appointments and a treatment for the LMD with this treatment he is admitted to the hospital for observation. When the melanoma was found it was in his brain, right lung, and his 7th left rib, he has done 1 1/2 rounds of IPI and is currently on zelboraf. He has had whole brain radiation, 2 gamma knife at two different times to brain tumors, cryoablation to his lung tumor and rib tumor, had his appendix removed, and this August his abdomen CT showed he had a mass in his small bowel that was resectioned. The CT also show two lymph node in his abdomen that were enlarged the surgeon was unable to remove because of the location.
If you have any questions my email is [email protected] I will help you with what I know.
Blessings from Arkansas
Samantha
-
- December 7, 2015 at 1:03 am
My husband is being treated at MDAnderson for liptomeningeal (LMD) he started treatment 12-2011 Dr Papadopoulos (Dr Papa is what we call him) started this treatment but has retired Dr Isabella Glitza was trained by Dr Papa in this treatment and has taken over Dr Papas LMD cases. My husband had LMD in his spine he did radiation to the area and on the last radiation treatment he went to surgery to have an ommaya placed this is how they check the spinal fluid (CFS) and administer the IL2. After the ommaya was placed he had to have a flow study done to make sure the ommaya was working and that the IL2 would circulate the CSF . When the flow test was done and showed to flow he was admitted to the hospital for a month they call this induction. He was given the IL2 serval times a week if he could take it this dose of IL2 is very small. It was not easy for him he was still a strong man when he started which probably helped him. Some of the Drs in the melanoma department do not recommend this treatment because it is so toxic. After induction is done Mickey had to have a treatment once a week for four weeks and then every two weeks four times then three weeks four times and so on they have some people that go every 3 months. Mickey has a treatment every 8 weeks now. When he hit bumps in the road the treatment would stop and he would be moved back. Along the way he developed hydrocephalus (which is a side effect of the treatment) a shunt had to be placed with a new ommaya and a new flow test. This is just one of many bumps in this journey. We live 8 1/2 hours from Houston and will leave this weekend for scans and Dr appointments and a treatment for the LMD with this treatment he is admitted to the hospital for observation. When the melanoma was found it was in his brain, right lung, and his 7th left rib, he has done 1 1/2 rounds of IPI and is currently on zelboraf. He has had whole brain radiation, 2 gamma knife at two different times to brain tumors, cryoablation to his lung tumor and rib tumor, had his appendix removed, and this August his abdomen CT showed he had a mass in his small bowel that was resectioned. The CT also show two lymph node in his abdomen that were enlarged the surgeon was unable to remove because of the location.
If you have any questions my email is [email protected] I will help you with what I know.
Blessings from Arkansas
Samantha
-
- January 16, 2016 at 5:33 pm
For anyone with leptomeningeal metastases, MSK says they have this trial for leptomeningeal melanoma metastases:
-
- January 16, 2016 at 5:33 pm
For anyone with leptomeningeal metastases, MSK says they have this trial for leptomeningeal melanoma metastases:
-
- January 16, 2016 at 5:33 pm
For anyone with leptomeningeal metastases, MSK says they have this trial for leptomeningeal melanoma metastases:
- You must be logged in to reply to this topic.