› Forums › General Melanoma Community › Need help with treatment options after craniotomy.
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Lucassi.
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- September 20, 2012 at 2:59 am
My husband Mike has metastatic melanoma in the left lung, brain and adrenal gland. He developed a brain tumor and the tumor on the adrenal gland after completing Yervoy about two months ago. He had no side effects from the Yervoy treatments which were supposed to shrink the lung tumor. In reality, the lung tumor grew slightly larger and the brain tumor and adrenal gland tumor developed.
My husband Mike has metastatic melanoma in the left lung, brain and adrenal gland. He developed a brain tumor and the tumor on the adrenal gland after completing Yervoy about two months ago. He had no side effects from the Yervoy treatments which were supposed to shrink the lung tumor. In reality, the lung tumor grew slightly larger and the brain tumor and adrenal gland tumor developed.
Mike had a craniotomy two weeks ago and is recovering without any complications. Unfortunately, his initial tumor was Braf and Ckit negative. As most of you know, there are not many treatment options for patients without these mutations. We see his oncologist in two weeks to talk about further treatments.
I would appreciate your input as what treatments might be available given my husband's history. I am so scared that the melanoma will spread further and there won't be anything we can do to stop it. I know that some of you have taken Temador and was wondering if anyone started taking it after a craniotomy, and how soon after the surgery?
Thank you for any suggestions you may have.
Sigrid
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- September 20, 2012 at 12:58 pm
Sigrid, My husband took temodar (as part of his biochemo) after his craniotomy last Fall. He was delayed starting biochemo/temodar as he needed radiation, and we waited for that to be finished. So, he started the drug six weeks after his surgery only because he had three weeks of radiation. I would think your husband could start temodar at your follow up doctor appointment, hopefully there won’t be any insurance delays. If you want to move it along, call his doctor office and tell them you want the temodar approved and ready to go! Good luck! Valerie (Phil’s wife)-
- September 21, 2012 at 1:39 am
Valerie, thank you for your response. I will take your advise. Mike has been having more and more discomfort and sometimes pain in the area where the lung tumor is located. I don't understand why his physician won't do radiation. Two doctors have now told us that melanoma does not respond to radiation, but yet I read on this board that many patients seem to have benefited from it. Since he just had the craniotomy I don't know if lung surgery is an option. I'm trying to be optimistic that he will have a late response to Yervoy but since it has been three months since he finished the treatment it is probably not likely. All I can do is hope and pray for the best. Thanks again and all the best to you. Sigrid
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- September 21, 2012 at 1:39 am
Valerie, thank you for your response. I will take your advise. Mike has been having more and more discomfort and sometimes pain in the area where the lung tumor is located. I don't understand why his physician won't do radiation. Two doctors have now told us that melanoma does not respond to radiation, but yet I read on this board that many patients seem to have benefited from it. Since he just had the craniotomy I don't know if lung surgery is an option. I'm trying to be optimistic that he will have a late response to Yervoy but since it has been three months since he finished the treatment it is probably not likely. All I can do is hope and pray for the best. Thanks again and all the best to you. Sigrid
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- September 21, 2012 at 1:39 am
Valerie, thank you for your response. I will take your advise. Mike has been having more and more discomfort and sometimes pain in the area where the lung tumor is located. I don't understand why his physician won't do radiation. Two doctors have now told us that melanoma does not respond to radiation, but yet I read on this board that many patients seem to have benefited from it. Since he just had the craniotomy I don't know if lung surgery is an option. I'm trying to be optimistic that he will have a late response to Yervoy but since it has been three months since he finished the treatment it is probably not likely. All I can do is hope and pray for the best. Thanks again and all the best to you. Sigrid
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- September 20, 2012 at 12:58 pm
Sigrid, My husband took temodar (as part of his biochemo) after his craniotomy last Fall. He was delayed starting biochemo/temodar as he needed radiation, and we waited for that to be finished. So, he started the drug six weeks after his surgery only because he had three weeks of radiation. I would think your husband could start temodar at your follow up doctor appointment, hopefully there won’t be any insurance delays. If you want to move it along, call his doctor office and tell them you want the temodar approved and ready to go! Good luck! Valerie (Phil’s wife) -
- September 20, 2012 at 12:58 pm
Sigrid, My husband took temodar (as part of his biochemo) after his craniotomy last Fall. He was delayed starting biochemo/temodar as he needed radiation, and we waited for that to be finished. So, he started the drug six weeks after his surgery only because he had three weeks of radiation. I would think your husband could start temodar at your follow up doctor appointment, hopefully there won’t be any insurance delays. If you want to move it along, call his doctor office and tell them you want the temodar approved and ready to go! Good luck! Valerie (Phil’s wife) -
- September 21, 2012 at 2:05 am
Hi Sigrid,
Sorry to hear your husband progressed. Is he being seen by a melanoma specialist oncologist? The comment about radiation (at least for the brain) sounds different from my experiences with my doctors, at least for the brain.
Both my single and double craniotomies (done at 2 completely different medical groups) were both followed up by beam radiation (Gamma Knife for #2, Cyber Knife for #1) to the resected brain tumor beds. That left me with the impression that follow up radiation to the tumor beds left in the brain would be normal — at least, for mine it seemed so, those locations had no contraindication to follow up with beam radiation. Are they planning to do this for his resected brain tumor bed too?
I also had two additional smaller brain tumors in 2011 that thus far have been treated solely with Gamma Knife radiation (plus Yervoy post-radiation).
If his brain stays stable, a clinical trial for anti-PD1 could be tried for, there's nothing required about mutation status for that drug, as there was no restriction with Yervoy either. Another would be the anti-PDL1 trial.
The clincial trail finder service elsewhere on this site (http://www.melanoma.org/learn-more/patient-reference-guide/melanoma%20clinical%20trial%20finder) is excellent and may help you track down additional trials that don't need mutations.
Good luck to both of you,
Kyle
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- September 21, 2012 at 2:05 am
Hi Sigrid,
Sorry to hear your husband progressed. Is he being seen by a melanoma specialist oncologist? The comment about radiation (at least for the brain) sounds different from my experiences with my doctors, at least for the brain.
Both my single and double craniotomies (done at 2 completely different medical groups) were both followed up by beam radiation (Gamma Knife for #2, Cyber Knife for #1) to the resected brain tumor beds. That left me with the impression that follow up radiation to the tumor beds left in the brain would be normal — at least, for mine it seemed so, those locations had no contraindication to follow up with beam radiation. Are they planning to do this for his resected brain tumor bed too?
I also had two additional smaller brain tumors in 2011 that thus far have been treated solely with Gamma Knife radiation (plus Yervoy post-radiation).
If his brain stays stable, a clinical trial for anti-PD1 could be tried for, there's nothing required about mutation status for that drug, as there was no restriction with Yervoy either. Another would be the anti-PDL1 trial.
The clincial trail finder service elsewhere on this site (http://www.melanoma.org/learn-more/patient-reference-guide/melanoma%20clinical%20trial%20finder) is excellent and may help you track down additional trials that don't need mutations.
Good luck to both of you,
Kyle
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- September 24, 2012 at 7:03 pm
Dear Kyle,
Thank you for your response. Currently, Mike is seen by an oncologist, however, he had been seen by a melonoma specialst in Denver when he first was diagnosed with melanoma. His oncologist has been consulting with the specialist about the latest developments. Mike has an appointment with the neurosurgeon next week and I will ask him again about radiation. Before the surgery he told us that "radiation does not usually work on your type of tumor". Maybe it was due to the size of the tumor and the hemorrhage. We see tha oncologist two days after we meet with the neurosurgeon. I continue to hope for stabilization of the existing tumors in the lung and adrenal gland. Will definately ask the oncologist about the anit-PDL 1 trial. Thank you again for providing such good information.
Best wishes to you.
Sigrid
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- September 24, 2012 at 11:19 pm
Sigrid, for my 3 largest brain tumors (2.4, 2.7 and 3.4 cm) those were each resected. 2 of those were hemorrhaging as well. Only the smaller (and non-hemorrhaging) ones were given a radiation-only attempt (considered too small to resect). But even for the 3 resected ones, they followed up a few weeks later with radiation to the 3 tumor bed — which seemed like standard procedure, in my case at least.You’re right, they won’t gamma knife brain tumors beyond a certain volume/size, somewhere north of 2 cm.. I think resection seemed preferred when possible.
There has been some excitement among oncologists with combining radiation with immune treatment like Yervoy. Theory is the radiation blasts melanoma cells apart giving plenty of material for the immune system to recognize and produce an immune memory and response against. Resection in the brain + radiation + systemic immune therapy isone combo to shoot for.
For the body, I don’t have any direct experience, of how and when and if radiation might be used in certain situations.
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- September 24, 2012 at 11:19 pm
Sigrid, for my 3 largest brain tumors (2.4, 2.7 and 3.4 cm) those were each resected. 2 of those were hemorrhaging as well. Only the smaller (and non-hemorrhaging) ones were given a radiation-only attempt (considered too small to resect). But even for the 3 resected ones, they followed up a few weeks later with radiation to the 3 tumor bed — which seemed like standard procedure, in my case at least.You’re right, they won’t gamma knife brain tumors beyond a certain volume/size, somewhere north of 2 cm.. I think resection seemed preferred when possible.
There has been some excitement among oncologists with combining radiation with immune treatment like Yervoy. Theory is the radiation blasts melanoma cells apart giving plenty of material for the immune system to recognize and produce an immune memory and response against. Resection in the brain + radiation + systemic immune therapy isone combo to shoot for.
For the body, I don’t have any direct experience, of how and when and if radiation might be used in certain situations.
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- September 24, 2012 at 11:19 pm
Sigrid, for my 3 largest brain tumors (2.4, 2.7 and 3.4 cm) those were each resected. 2 of those were hemorrhaging as well. Only the smaller (and non-hemorrhaging) ones were given a radiation-only attempt (considered too small to resect). But even for the 3 resected ones, they followed up a few weeks later with radiation to the 3 tumor bed — which seemed like standard procedure, in my case at least.You’re right, they won’t gamma knife brain tumors beyond a certain volume/size, somewhere north of 2 cm.. I think resection seemed preferred when possible.
There has been some excitement among oncologists with combining radiation with immune treatment like Yervoy. Theory is the radiation blasts melanoma cells apart giving plenty of material for the immune system to recognize and produce an immune memory and response against. Resection in the brain + radiation + systemic immune therapy isone combo to shoot for.
For the body, I don’t have any direct experience, of how and when and if radiation might be used in certain situations.
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- September 24, 2012 at 7:03 pm
Dear Kyle,
Thank you for your response. Currently, Mike is seen by an oncologist, however, he had been seen by a melonoma specialst in Denver when he first was diagnosed with melanoma. His oncologist has been consulting with the specialist about the latest developments. Mike has an appointment with the neurosurgeon next week and I will ask him again about radiation. Before the surgery he told us that "radiation does not usually work on your type of tumor". Maybe it was due to the size of the tumor and the hemorrhage. We see tha oncologist two days after we meet with the neurosurgeon. I continue to hope for stabilization of the existing tumors in the lung and adrenal gland. Will definately ask the oncologist about the anit-PDL 1 trial. Thank you again for providing such good information.
Best wishes to you.
Sigrid
-
- September 24, 2012 at 7:03 pm
Dear Kyle,
Thank you for your response. Currently, Mike is seen by an oncologist, however, he had been seen by a melonoma specialst in Denver when he first was diagnosed with melanoma. His oncologist has been consulting with the specialist about the latest developments. Mike has an appointment with the neurosurgeon next week and I will ask him again about radiation. Before the surgery he told us that "radiation does not usually work on your type of tumor". Maybe it was due to the size of the tumor and the hemorrhage. We see tha oncologist two days after we meet with the neurosurgeon. I continue to hope for stabilization of the existing tumors in the lung and adrenal gland. Will definately ask the oncologist about the anit-PDL 1 trial. Thank you again for providing such good information.
Best wishes to you.
Sigrid
-
- September 21, 2012 at 2:05 am
Hi Sigrid,
Sorry to hear your husband progressed. Is he being seen by a melanoma specialist oncologist? The comment about radiation (at least for the brain) sounds different from my experiences with my doctors, at least for the brain.
Both my single and double craniotomies (done at 2 completely different medical groups) were both followed up by beam radiation (Gamma Knife for #2, Cyber Knife for #1) to the resected brain tumor beds. That left me with the impression that follow up radiation to the tumor beds left in the brain would be normal — at least, for mine it seemed so, those locations had no contraindication to follow up with beam radiation. Are they planning to do this for his resected brain tumor bed too?
I also had two additional smaller brain tumors in 2011 that thus far have been treated solely with Gamma Knife radiation (plus Yervoy post-radiation).
If his brain stays stable, a clinical trial for anti-PD1 could be tried for, there's nothing required about mutation status for that drug, as there was no restriction with Yervoy either. Another would be the anti-PDL1 trial.
The clincial trail finder service elsewhere on this site (http://www.melanoma.org/learn-more/patient-reference-guide/melanoma%20clinical%20trial%20finder) is excellent and may help you track down additional trials that don't need mutations.
Good luck to both of you,
Kyle
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