› Forums › General Melanoma Community › New brain mets
- This topic has 12 replies, 4 voices, and was last updated 10 years, 6 months ago by
kylez.
- Post
-
- October 17, 2013 at 4:40 pm
Hello all, just need some thoughts and experiences. My husband, Peck is a stage 4 survivor for over 10 years. A quick summary of treatments….surgery x 4, interferon, GMCSF, NED for 5 years, high dose IL2, Yervoy x 4 infusions, anti-pd1(non-responder)(Moffitt), TILS harvest( no treatment as of yet), IPI /biochemotherapy trial at MDA,and reinduction of IPI x1. Whew!
The latest…. Disease in lungs(small), left neck, left axilla, chest and now 5 very small brain lesions. Peck s currently in hospital dealing with some dehydration issues so we have one on one contact our doctors. Dr. Amin in Charlotte is our melanoma specialist. Today, they are discussing best way to go with treating brain…SRS vs. WBR. Just asking for some thoughts or experiences any of you may have. This melanoma journey is much more tolerable because of all of you and this board….peace and healing to all! Thank you in advance, Melissa
- Replies
-
-
- October 17, 2013 at 5:35 pm
I consider WBR a last course of action as does my Dr. I had 2 brain mets SRSd in Nov of last year. They were both under 1 cm and it worked great, no complications. Now I have two more looking at SRS for those. Sounds like you have been through the wringer too and I wish you all the best.
Amy
-
- October 17, 2013 at 8:37 pm
So sorry for all that you have both been through. Also sorry that the anti-PD1 trial was not more helpful. However, I have to agree with Amy. Though when I had SRS I was dealing with only one brain met….and did well….that is certainly what I would be thinking to do….again….if I were in your shoes. Wishing you both my very best. Hang in there. C
-
- October 17, 2013 at 8:37 pm
So sorry for all that you have both been through. Also sorry that the anti-PD1 trial was not more helpful. However, I have to agree with Amy. Though when I had SRS I was dealing with only one brain met….and did well….that is certainly what I would be thinking to do….again….if I were in your shoes. Wishing you both my very best. Hang in there. C
-
- October 17, 2013 at 8:37 pm
So sorry for all that you have both been through. Also sorry that the anti-PD1 trial was not more helpful. However, I have to agree with Amy. Though when I had SRS I was dealing with only one brain met….and did well….that is certainly what I would be thinking to do….again….if I were in your shoes. Wishing you both my very best. Hang in there. C
-
- October 17, 2013 at 5:35 pm
I consider WBR a last course of action as does my Dr. I had 2 brain mets SRSd in Nov of last year. They were both under 1 cm and it worked great, no complications. Now I have two more looking at SRS for those. Sounds like you have been through the wringer too and I wish you all the best.
Amy
-
- October 17, 2013 at 5:35 pm
I consider WBR a last course of action as does my Dr. I had 2 brain mets SRSd in Nov of last year. They were both under 1 cm and it worked great, no complications. Now I have two more looking at SRS for those. Sounds like you have been through the wringer too and I wish you all the best.
Amy
-
- October 18, 2013 at 4:01 pm
Hi Melissa Ann,
I agree with the others, I would NOT do WBR unless you absolutely had to.
Yes SRS, is a good choice. However, I believe the BEST choice is PROTON Rafiation Theraphy. MD Anderson has a brain & Skull Center. Here is the link:
http://www.mdanderson.org/patient-and-cancer-information/proton-therapy-center/index.html
Proton theraphy kills less HEALTHY tissue than SRS, GAMA Knife or standard radation:
Excerp from MD Anderson site;
"Imagine a 196-ton, cancer-killing machine that can target a patient’s tumor with sub-millimeter precision while sparing nearby healthy tissues and minimizing side effects. In its most simple terms, that’s proton therapy.
Standard radiation therapy has evolved and improved over the years and is effective in controlling many cancers. However, because X-ray beams are composed of primary photons and secondary electrons, they deposit their energy along the path of the beam, to the targeted tumor and beyond, and deliver radiation to healthy tissues before and after the tumor site. This radiation “exit dose” may cause health issues later because it can damage the normal tissue or organs near the tumor or area of concern.
The advantage of proton treatment is that the physician can control where the proton releases the bulk of its cancer-fighting energy. As the protons move through the body, they slow down and interact with electrons, and release energy. The point where the highest energy release occurs is the “Bragg peak.” A physician can designate the Bragg peak’s location, causing the most damage to the targeted tumor cells. A proton beam conforms to the shape and depth of a tumor, while sparing healthy tissues and organs."
Proton theraphy is VERY EXPENSIVE so you might have a problem with your insurance company. However, killing any EXTRA brain tissue (“exit dose”) is critical so I would at least try to get Proton therapy approved for Peck.
Good Luck
Marybeth
-
- October 18, 2013 at 10:27 pm
Hi Melissa, your husband is one heck of a fighter. My radiation oncologist's stance is the same as others have said, that wherever possible do SRS before considering WBR.
Proton therapy is something I don't know much about, since my treatment facility doesn't have one, and I don't know what my radiation oncologist thinks. There are 11 Proton therapy locations in the U.S., see http://www.proton-therapy.org/map.htm, one of which is MDAnderson per Marybeth.
Even if Proton therapy is not for you, there is still choices to make among the other systems available, so you might want to ask your doc which beam radiation system they use.I did get treatment twice, once via Cyber Knife and once via Gamma Knife. FWIW I like the very firmly attached ("surgically") metal frame used for Gamma Knife better than the less immobile plastic mask used for CyberKnife. Because it makes me feel that the beam can be very accurately targeted since I can't move my head even a tiny bit. I certainly can't make claim either system is better than the other, but the last time I checked, the the manufacturer-listed resolution of Gamma Kinfe system (i.e. the smallest tumor it can target) is smaller with the Gamma Knife system. My radiation oncologist strongly prefers the Gamma Knife system.
FWIW Here's a listing of Gamma Knife systems in North America: http://www.elekta.com/patients/treatment-information/treatment-centers/leksell-gamma-knife/north-america.html. Two are in NC.
Good luck to you and Peck. Hoping whatever you choose, you are able to choose and get the treatment in the very near future.
– Kyle
-
- October 18, 2013 at 10:27 pm
Hi Melissa, your husband is one heck of a fighter. My radiation oncologist's stance is the same as others have said, that wherever possible do SRS before considering WBR.
Proton therapy is something I don't know much about, since my treatment facility doesn't have one, and I don't know what my radiation oncologist thinks. There are 11 Proton therapy locations in the U.S., see http://www.proton-therapy.org/map.htm, one of which is MDAnderson per Marybeth.
Even if Proton therapy is not for you, there is still choices to make among the other systems available, so you might want to ask your doc which beam radiation system they use.I did get treatment twice, once via Cyber Knife and once via Gamma Knife. FWIW I like the very firmly attached ("surgically") metal frame used for Gamma Knife better than the less immobile plastic mask used for CyberKnife. Because it makes me feel that the beam can be very accurately targeted since I can't move my head even a tiny bit. I certainly can't make claim either system is better than the other, but the last time I checked, the the manufacturer-listed resolution of Gamma Kinfe system (i.e. the smallest tumor it can target) is smaller with the Gamma Knife system. My radiation oncologist strongly prefers the Gamma Knife system.
FWIW Here's a listing of Gamma Knife systems in North America: http://www.elekta.com/patients/treatment-information/treatment-centers/leksell-gamma-knife/north-america.html. Two are in NC.
Good luck to you and Peck. Hoping whatever you choose, you are able to choose and get the treatment in the very near future.
– Kyle
-
- October 18, 2013 at 10:27 pm
Hi Melissa, your husband is one heck of a fighter. My radiation oncologist's stance is the same as others have said, that wherever possible do SRS before considering WBR.
Proton therapy is something I don't know much about, since my treatment facility doesn't have one, and I don't know what my radiation oncologist thinks. There are 11 Proton therapy locations in the U.S., see http://www.proton-therapy.org/map.htm, one of which is MDAnderson per Marybeth.
Even if Proton therapy is not for you, there is still choices to make among the other systems available, so you might want to ask your doc which beam radiation system they use.I did get treatment twice, once via Cyber Knife and once via Gamma Knife. FWIW I like the very firmly attached ("surgically") metal frame used for Gamma Knife better than the less immobile plastic mask used for CyberKnife. Because it makes me feel that the beam can be very accurately targeted since I can't move my head even a tiny bit. I certainly can't make claim either system is better than the other, but the last time I checked, the the manufacturer-listed resolution of Gamma Kinfe system (i.e. the smallest tumor it can target) is smaller with the Gamma Knife system. My radiation oncologist strongly prefers the Gamma Knife system.
FWIW Here's a listing of Gamma Knife systems in North America: http://www.elekta.com/patients/treatment-information/treatment-centers/leksell-gamma-knife/north-america.html. Two are in NC.
Good luck to you and Peck. Hoping whatever you choose, you are able to choose and get the treatment in the very near future.
– Kyle
-
- October 18, 2013 at 4:01 pm
Hi Melissa Ann,
I agree with the others, I would NOT do WBR unless you absolutely had to.
Yes SRS, is a good choice. However, I believe the BEST choice is PROTON Rafiation Theraphy. MD Anderson has a brain & Skull Center. Here is the link:
http://www.mdanderson.org/patient-and-cancer-information/proton-therapy-center/index.html
Proton theraphy kills less HEALTHY tissue than SRS, GAMA Knife or standard radation:
Excerp from MD Anderson site;
"Imagine a 196-ton, cancer-killing machine that can target a patient’s tumor with sub-millimeter precision while sparing nearby healthy tissues and minimizing side effects. In its most simple terms, that’s proton therapy.
Standard radiation therapy has evolved and improved over the years and is effective in controlling many cancers. However, because X-ray beams are composed of primary photons and secondary electrons, they deposit their energy along the path of the beam, to the targeted tumor and beyond, and deliver radiation to healthy tissues before and after the tumor site. This radiation “exit dose” may cause health issues later because it can damage the normal tissue or organs near the tumor or area of concern.
The advantage of proton treatment is that the physician can control where the proton releases the bulk of its cancer-fighting energy. As the protons move through the body, they slow down and interact with electrons, and release energy. The point where the highest energy release occurs is the “Bragg peak.” A physician can designate the Bragg peak’s location, causing the most damage to the targeted tumor cells. A proton beam conforms to the shape and depth of a tumor, while sparing healthy tissues and organs."
Proton theraphy is VERY EXPENSIVE so you might have a problem with your insurance company. However, killing any EXTRA brain tissue (“exit dose”) is critical so I would at least try to get Proton therapy approved for Peck.
Good Luck
Marybeth
-
- October 18, 2013 at 4:01 pm
Hi Melissa Ann,
I agree with the others, I would NOT do WBR unless you absolutely had to.
Yes SRS, is a good choice. However, I believe the BEST choice is PROTON Rafiation Theraphy. MD Anderson has a brain & Skull Center. Here is the link:
http://www.mdanderson.org/patient-and-cancer-information/proton-therapy-center/index.html
Proton theraphy kills less HEALTHY tissue than SRS, GAMA Knife or standard radation:
Excerp from MD Anderson site;
"Imagine a 196-ton, cancer-killing machine that can target a patient’s tumor with sub-millimeter precision while sparing nearby healthy tissues and minimizing side effects. In its most simple terms, that’s proton therapy.
Standard radiation therapy has evolved and improved over the years and is effective in controlling many cancers. However, because X-ray beams are composed of primary photons and secondary electrons, they deposit their energy along the path of the beam, to the targeted tumor and beyond, and deliver radiation to healthy tissues before and after the tumor site. This radiation “exit dose” may cause health issues later because it can damage the normal tissue or organs near the tumor or area of concern.
The advantage of proton treatment is that the physician can control where the proton releases the bulk of its cancer-fighting energy. As the protons move through the body, they slow down and interact with electrons, and release energy. The point where the highest energy release occurs is the “Bragg peak.” A physician can designate the Bragg peak’s location, causing the most damage to the targeted tumor cells. A proton beam conforms to the shape and depth of a tumor, while sparing healthy tissues and organs."
Proton theraphy is VERY EXPENSIVE so you might have a problem with your insurance company. However, killing any EXTRA brain tissue (“exit dose”) is critical so I would at least try to get Proton therapy approved for Peck.
Good Luck
Marybeth
-
- You must be logged in to reply to this topic.