› Forums › General Melanoma Community › WBR starts tomorrow
- This topic has 33 replies, 6 voices, and was last updated 11 years, 3 months ago by
DeniseK.
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- December 27, 2012 at 1:43 am
Well I met with oncology radiologist today, all my doctors agree to do WBR. There is just one brain tumor but they’re afraid there are other cells that could start growing. He said WBR can be done again in about a year and gamma knife or SRS can be done in a month or two if the WBR doesn’t kill the one tumor completely. I didn’t want to do WBR but I’m confident my doctors are doing what’s best. Hopefully this will work with the zelboraf. Still waiting on the z.Well I met with oncology radiologist today, all my doctors agree to do WBR. There is just one brain tumor but they’re afraid there are other cells that could start growing. He said WBR can be done again in about a year and gamma knife or SRS can be done in a month or two if the WBR doesn’t kill the one tumor completely. I didn’t want to do WBR but I’m confident my doctors are doing what’s best. Hopefully this will work with the zelboraf. Still waiting on the z.
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- December 27, 2012 at 4:31 am
DeniseK, I replied to you on Jonathan's chat site. Please go to his site and read the response. I hope I was helpful. Stay in touch and I will communicate all I know on a continual basis. You may have to travel to a site where the trial is being conducted. Make certain you do that regardless of the costs and inconvenience. That means asking for help! Recently some of the drug companies have been paying for travel expenses for participants, check this out as well. Also, don't be bashful! Ask anyone and everyone for financial assistance. Get your local media folks involved as well. Have your story told on TV. Stay positive and trust G-D and all will be just fine.
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- December 27, 2012 at 4:31 am
DeniseK, I replied to you on Jonathan's chat site. Please go to his site and read the response. I hope I was helpful. Stay in touch and I will communicate all I know on a continual basis. You may have to travel to a site where the trial is being conducted. Make certain you do that regardless of the costs and inconvenience. That means asking for help! Recently some of the drug companies have been paying for travel expenses for participants, check this out as well. Also, don't be bashful! Ask anyone and everyone for financial assistance. Get your local media folks involved as well. Have your story told on TV. Stay positive and trust G-D and all will be just fine.
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- December 27, 2012 at 4:31 am
DeniseK, I replied to you on Jonathan's chat site. Please go to his site and read the response. I hope I was helpful. Stay in touch and I will communicate all I know on a continual basis. You may have to travel to a site where the trial is being conducted. Make certain you do that regardless of the costs and inconvenience. That means asking for help! Recently some of the drug companies have been paying for travel expenses for participants, check this out as well. Also, don't be bashful! Ask anyone and everyone for financial assistance. Get your local media folks involved as well. Have your story told on TV. Stay positive and trust G-D and all will be just fine.
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- December 27, 2012 at 4:32 am
DeniseK, I replied to you on Jonathan's chat site. Please go to his site and read the response. I hope I was helpful. Stay in touch and I will communicate all I know on a continual basis. You may have to travel to a site where the trial is being conducted. Make certain you do that regardless of the costs and inconvenience. That means asking for help! Recently some of the drug companies have been paying for travel expenses for participants, check this out as well. Also, don't be bashful! Ask anyone and everyone for financial assistance. Get your local media folks involved as well. Have your story told on TV. Stay positive and trust G-D and all will be just fine.
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- December 27, 2012 at 4:32 am
DeniseK, I replied to you on Jonathan's chat site. Please go to his site and read the response. I hope I was helpful. Stay in touch and I will communicate all I know on a continual basis. You may have to travel to a site where the trial is being conducted. Make certain you do that regardless of the costs and inconvenience. That means asking for help! Recently some of the drug companies have been paying for travel expenses for participants, check this out as well. Also, don't be bashful! Ask anyone and everyone for financial assistance. Get your local media folks involved as well. Have your story told on TV. Stay positive and trust G-D and all will be just fine.
-
- December 27, 2012 at 4:32 am
DeniseK, I replied to you on Jonathan's chat site. Please go to his site and read the response. I hope I was helpful. Stay in touch and I will communicate all I know on a continual basis. You may have to travel to a site where the trial is being conducted. Make certain you do that regardless of the costs and inconvenience. That means asking for help! Recently some of the drug companies have been paying for travel expenses for participants, check this out as well. Also, don't be bashful! Ask anyone and everyone for financial assistance. Get your local media folks involved as well. Have your story told on TV. Stay positive and trust G-D and all will be just fine.
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- December 27, 2012 at 6:12 am
Denise,
I am also doing WBR however I did SRS first , surgery next and then 4 months later more brain mets, Zelboraf and when my mel started to come back it became agressive – now doing wbr. I have been handling this except for the constant nauseausness. I am starting Ipi next week before the wbr is quite finished.
Originally my mel specialist met with the radiologist and nuerosurgeon and decided to go with SRS. Mine was very large and deep. Edema was so bad I moved on to surgery. They found out that the tumor was 70% dead. My team told me that brain tumors – when there is just 1 there are often great sucess. In my case it wasn't but that doesn't mean for many. Jag often is on this board and he had 2 mets that radiation was not successful for him so he had surgery. He has been NED now for a few years.
I realize you've made your decision but ask tomorrow if they are going with WBR because they don't do SRS. My local oncologist did that to me. She orginally told me to do WBR. Then I found out that she didn't have the local hospital to do SRS. That or gamma knife must have the more advanced radiation machines. The other question to ask them if this was because of your insurance. You just want to made your decision based on educational reasons. Go to the MIF site and look at the webnar's on radiation on the brain.
What ever you go with I hope your tumor is goine soon.
Linda
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- December 27, 2012 at 6:12 am
Denise,
I am also doing WBR however I did SRS first , surgery next and then 4 months later more brain mets, Zelboraf and when my mel started to come back it became agressive – now doing wbr. I have been handling this except for the constant nauseausness. I am starting Ipi next week before the wbr is quite finished.
Originally my mel specialist met with the radiologist and nuerosurgeon and decided to go with SRS. Mine was very large and deep. Edema was so bad I moved on to surgery. They found out that the tumor was 70% dead. My team told me that brain tumors – when there is just 1 there are often great sucess. In my case it wasn't but that doesn't mean for many. Jag often is on this board and he had 2 mets that radiation was not successful for him so he had surgery. He has been NED now for a few years.
I realize you've made your decision but ask tomorrow if they are going with WBR because they don't do SRS. My local oncologist did that to me. She orginally told me to do WBR. Then I found out that she didn't have the local hospital to do SRS. That or gamma knife must have the more advanced radiation machines. The other question to ask them if this was because of your insurance. You just want to made your decision based on educational reasons. Go to the MIF site and look at the webnar's on radiation on the brain.
What ever you go with I hope your tumor is goine soon.
Linda
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- December 28, 2012 at 6:08 am
Hi Linda,
So you’ve been doing wbr? Is that what is causing nausea? From what the doctors say once wbr is done the systematic drugs work better on the brain so there’s some good news! I know you’ve been through a lot and my thoughts are with you, hang in there sister, I know your a fighter like me so I believe we can beat this!!
Lots of love,
Denise -
- December 28, 2012 at 6:08 am
Hi Linda,
So you’ve been doing wbr? Is that what is causing nausea? From what the doctors say once wbr is done the systematic drugs work better on the brain so there’s some good news! I know you’ve been through a lot and my thoughts are with you, hang in there sister, I know your a fighter like me so I believe we can beat this!!
Lots of love,
Denise -
- December 28, 2012 at 11:31 pm
Denise,
I've been warned 2 different reasons for nausea. Brain mets can cause the problem and wbr also can cause it. They/ve given me 2 meds that I'm to alternate with. I've lost about 10 pounds since I started 2 weeks ago. ugh….
On Monday I start with ippi and will have 2 treatments of radiation that will be Wed and Thursday.
I haven't been overly tired. I was actually more tired on zelboraf than on the radiation! I usually take about a 30 min nap when I get home and I tend to sleep in a little longer in the morning.
I do wonder why they do the treatments over different time. You are 10 days , I'm 15 days and I've heard of some over 17 days. I met with the radiologist yesterday and meant to ask him but I forgot.
My hair started really falling out on the 10th day. I was already wearing a wig because it was so thin. My son bought me a beautiful pair of earings to wear with the scarf.
I hope your going to fly through the wbr. Keep posting to see how your doing.
Linda
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- December 28, 2012 at 11:31 pm
Denise,
I've been warned 2 different reasons for nausea. Brain mets can cause the problem and wbr also can cause it. They/ve given me 2 meds that I'm to alternate with. I've lost about 10 pounds since I started 2 weeks ago. ugh….
On Monday I start with ippi and will have 2 treatments of radiation that will be Wed and Thursday.
I haven't been overly tired. I was actually more tired on zelboraf than on the radiation! I usually take about a 30 min nap when I get home and I tend to sleep in a little longer in the morning.
I do wonder why they do the treatments over different time. You are 10 days , I'm 15 days and I've heard of some over 17 days. I met with the radiologist yesterday and meant to ask him but I forgot.
My hair started really falling out on the 10th day. I was already wearing a wig because it was so thin. My son bought me a beautiful pair of earings to wear with the scarf.
I hope your going to fly through the wbr. Keep posting to see how your doing.
Linda
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- December 30, 2012 at 4:00 am
I'm getting 300 rads per visit for a total of 3, 000 rads he did say about by the time I'm done my hair will be gone, not a big deal losing hair. I've had like a weird feeling in my head, hard to explain but like its hot, ice cream works really good at making me feel better. 🙂 I haven't felt too tired today just horrible headache but no nausea. I got word my z will be delivered this Friday. I have a good feeling we're going to be just fine!! Please take care,
All my best, Denise
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- December 30, 2012 at 4:00 am
I'm getting 300 rads per visit for a total of 3, 000 rads he did say about by the time I'm done my hair will be gone, not a big deal losing hair. I've had like a weird feeling in my head, hard to explain but like its hot, ice cream works really good at making me feel better. 🙂 I haven't felt too tired today just horrible headache but no nausea. I got word my z will be delivered this Friday. I have a good feeling we're going to be just fine!! Please take care,
All my best, Denise
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- December 30, 2012 at 4:00 am
I'm getting 300 rads per visit for a total of 3, 000 rads he did say about by the time I'm done my hair will be gone, not a big deal losing hair. I've had like a weird feeling in my head, hard to explain but like its hot, ice cream works really good at making me feel better. 🙂 I haven't felt too tired today just horrible headache but no nausea. I got word my z will be delivered this Friday. I have a good feeling we're going to be just fine!! Please take care,
All my best, Denise
-
- December 28, 2012 at 11:31 pm
Denise,
I've been warned 2 different reasons for nausea. Brain mets can cause the problem and wbr also can cause it. They/ve given me 2 meds that I'm to alternate with. I've lost about 10 pounds since I started 2 weeks ago. ugh….
On Monday I start with ippi and will have 2 treatments of radiation that will be Wed and Thursday.
I haven't been overly tired. I was actually more tired on zelboraf than on the radiation! I usually take about a 30 min nap when I get home and I tend to sleep in a little longer in the morning.
I do wonder why they do the treatments over different time. You are 10 days , I'm 15 days and I've heard of some over 17 days. I met with the radiologist yesterday and meant to ask him but I forgot.
My hair started really falling out on the 10th day. I was already wearing a wig because it was so thin. My son bought me a beautiful pair of earings to wear with the scarf.
I hope your going to fly through the wbr. Keep posting to see how your doing.
Linda
-
- December 28, 2012 at 6:08 am
Hi Linda,
So you’ve been doing wbr? Is that what is causing nausea? From what the doctors say once wbr is done the systematic drugs work better on the brain so there’s some good news! I know you’ve been through a lot and my thoughts are with you, hang in there sister, I know your a fighter like me so I believe we can beat this!!
Lots of love,
Denise
-
- December 27, 2012 at 6:12 am
Denise,
I am also doing WBR however I did SRS first , surgery next and then 4 months later more brain mets, Zelboraf and when my mel started to come back it became agressive – now doing wbr. I have been handling this except for the constant nauseausness. I am starting Ipi next week before the wbr is quite finished.
Originally my mel specialist met with the radiologist and nuerosurgeon and decided to go with SRS. Mine was very large and deep. Edema was so bad I moved on to surgery. They found out that the tumor was 70% dead. My team told me that brain tumors – when there is just 1 there are often great sucess. In my case it wasn't but that doesn't mean for many. Jag often is on this board and he had 2 mets that radiation was not successful for him so he had surgery. He has been NED now for a few years.
I realize you've made your decision but ask tomorrow if they are going with WBR because they don't do SRS. My local oncologist did that to me. She orginally told me to do WBR. Then I found out that she didn't have the local hospital to do SRS. That or gamma knife must have the more advanced radiation machines. The other question to ask them if this was because of your insurance. You just want to made your decision based on educational reasons. Go to the MIF site and look at the webnar's on radiation on the brain.
What ever you go with I hope your tumor is goine soon.
Linda
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- December 28, 2012 at 12:53 am
Good luck tomorrow Denise! Thanks for sharing and keeping us updated with your treatments. I know the feeling of not wanting to do something but just putting your trust in your dr.'s, obviously you feel confident in their abilities and treatment recommendations. Will be thinking of you and sending positive thoughts of success with this treatment.
Take care,
Swanee
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- December 28, 2012 at 12:53 am
Good luck tomorrow Denise! Thanks for sharing and keeping us updated with your treatments. I know the feeling of not wanting to do something but just putting your trust in your dr.'s, obviously you feel confident in their abilities and treatment recommendations. Will be thinking of you and sending positive thoughts of success with this treatment.
Take care,
Swanee
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- December 28, 2012 at 12:53 am
Good luck tomorrow Denise! Thanks for sharing and keeping us updated with your treatments. I know the feeling of not wanting to do something but just putting your trust in your dr.'s, obviously you feel confident in their abilities and treatment recommendations. Will be thinking of you and sending positive thoughts of success with this treatment.
Take care,
Swanee
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- December 28, 2012 at 5:55 am
Thanks everyone for your support! WBR was recommended because there seems to be a bunch of cells growing everywhere throughout my body, the odds are there are more cells in my brain that aren’t showing up yet on the mri, if they did gamma knife or SRS then wbr can’t be done later without risk of crossing radiated areas and causing damage but gamma knife can be done later if any more mets come up with less damage. Its really a simple process takes about 5 minutes and can’t even feel it. I’ll be getting 300 rads per day for 10 days. Today I came home and slept for 6 hours, not sure if it was because I hardly slept last night being anxious, the dr said there aren’t many side effects but in the next 2 weeks I’ll be losing my hair. I went to the American Cancer Society and there’s a local salon that has wigs that are cleaned, and they will style them to you for free. They also have hats and knitted caps that. Are donated. Also there are a ton of support groups that help you with food, gas, and transportation, also child care if you need it. You can call American Cancer Society, Stephanie Lane at the Cancer Resource Network and ask what’s available or tell them what you need and she can help.1-800-227-2345. There’s also spa resources where you can go to get pampered, pedicure, manicure, massage, or relax. I think different states/cities have different programs. Hope you all have a great evening!
Love Denise -
- December 28, 2012 at 5:55 am
Thanks everyone for your support! WBR was recommended because there seems to be a bunch of cells growing everywhere throughout my body, the odds are there are more cells in my brain that aren’t showing up yet on the mri, if they did gamma knife or SRS then wbr can’t be done later without risk of crossing radiated areas and causing damage but gamma knife can be done later if any more mets come up with less damage. Its really a simple process takes about 5 minutes and can’t even feel it. I’ll be getting 300 rads per day for 10 days. Today I came home and slept for 6 hours, not sure if it was because I hardly slept last night being anxious, the dr said there aren’t many side effects but in the next 2 weeks I’ll be losing my hair. I went to the American Cancer Society and there’s a local salon that has wigs that are cleaned, and they will style them to you for free. They also have hats and knitted caps that. Are donated. Also there are a ton of support groups that help you with food, gas, and transportation, also child care if you need it. You can call American Cancer Society, Stephanie Lane at the Cancer Resource Network and ask what’s available or tell them what you need and she can help.1-800-227-2345. There’s also spa resources where you can go to get pampered, pedicure, manicure, massage, or relax. I think different states/cities have different programs. Hope you all have a great evening!
Love Denise -
- December 28, 2012 at 5:55 am
Thanks everyone for your support! WBR was recommended because there seems to be a bunch of cells growing everywhere throughout my body, the odds are there are more cells in my brain that aren’t showing up yet on the mri, if they did gamma knife or SRS then wbr can’t be done later without risk of crossing radiated areas and causing damage but gamma knife can be done later if any more mets come up with less damage. Its really a simple process takes about 5 minutes and can’t even feel it. I’ll be getting 300 rads per day for 10 days. Today I came home and slept for 6 hours, not sure if it was because I hardly slept last night being anxious, the dr said there aren’t many side effects but in the next 2 weeks I’ll be losing my hair. I went to the American Cancer Society and there’s a local salon that has wigs that are cleaned, and they will style them to you for free. They also have hats and knitted caps that. Are donated. Also there are a ton of support groups that help you with food, gas, and transportation, also child care if you need it. You can call American Cancer Society, Stephanie Lane at the Cancer Resource Network and ask what’s available or tell them what you need and she can help.1-800-227-2345. There’s also spa resources where you can go to get pampered, pedicure, manicure, massage, or relax. I think different states/cities have different programs. Hope you all have a great evening!
Love Denise -
- December 28, 2012 at 6:54 pm
Denise,
I just came across your post…hope all is going well. Best of luck with the WBR. You're in my prayers!
Tricia
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