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- This topic has 51 replies, 11 voices, and was last updated 12 years, 7 months ago by
heidiboardman.
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- December 22, 2012 at 1:10 am
Hello everyone,
Wow, so I’ve been through a lot the last couple weeks. I was on a temporary insurance for low income which only lasted 2 months. My doctor tried to get me zelboraf but the state denied coverage so I was looking into clinical trials. I had an MRI of my brain on Monday and was told Tuesday I have a 12mm x12mm met in the right frontal area, I suspected this due to having some pretty bad headaches lately, so this now excludes me from the trial. My doctor wants me to get either gamma knife or external beam radiation followed ny WBR, but not sure what I’m gonna do, I meet with the radiologist next week to discuss options. I applied for social security disability last week and was approved in about 4 days, thankfully this gives me medi cal insurance and I can now get the zelboraf and radiation treatments. I’m on a steroid Dexamethasone 4mg to help reduce swelling in my brain, I’m also on a time release morphine sulfate 20mg capsule to help with pain in my head, chest, back, and leg. I should be starting z next week and radiation the following week. I wanted to ask if you have had brain mets and radiation, should I get wbr after the gamma knife? I noticed some people don’t do wbr right away. I’m thinking if I only have the one brain met I should just zap that and wait and see what happens with the z.
Right now I’m so thankful I finally will have insurance to get the help I need. If your stage 4 its pretty fast at disability, I’ll get my first check january 1st and the medi cal was immediate. Its not medicaid its state insurance for first 2 years. I know there’s been some questions about the process so hopefully this helps someone.
Can’t believe Christmas is 3 days away! Merry Christmas everyone!! 🙂
Courage, Strength, and Hope for us all!
Denise
- Replies
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- December 22, 2012 at 1:28 am
Wow – you have been through a lot. I think your plan for the brain mets is a good one – just try zapping what you have and see what happens on Zel. I think you can do WBR afterwards if necessary, but it sounds to me like it is a later option rather than the first thing in many cases. I hope someone who has had experience with this will chime in.
So glad about the insurance. I am also glad to see that our SS system responded quickly and appropriately. Merry, merry Christmas and keep us posted about the Zel. Fen
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- December 22, 2012 at 7:34 am
Thanks Fen,
I’m pretty sure I’m going to hold off on wbr, with just one brain met. My doctor freaked me out when he told me but I knew just having one was good news since I figured something was going on, I had blurry vision, headaches, ringing in my ear and my scalp was itching like crazy, not sure why my scalp was itchy but it hasn’t been itching the last couple days so the dex must be working.
I’m going to enjoy the holidays and stay positive. I always say, no matter how bad you have it someone else has probably got it worse. I’m hanging in there and hoping for the best for everyone that’s fighting. -
- December 22, 2012 at 7:34 am
Thanks Fen,
I’m pretty sure I’m going to hold off on wbr, with just one brain met. My doctor freaked me out when he told me but I knew just having one was good news since I figured something was going on, I had blurry vision, headaches, ringing in my ear and my scalp was itching like crazy, not sure why my scalp was itchy but it hasn’t been itching the last couple days so the dex must be working.
I’m going to enjoy the holidays and stay positive. I always say, no matter how bad you have it someone else has probably got it worse. I’m hanging in there and hoping for the best for everyone that’s fighting. -
- December 22, 2012 at 7:34 am
Thanks Fen,
I’m pretty sure I’m going to hold off on wbr, with just one brain met. My doctor freaked me out when he told me but I knew just having one was good news since I figured something was going on, I had blurry vision, headaches, ringing in my ear and my scalp was itching like crazy, not sure why my scalp was itchy but it hasn’t been itching the last couple days so the dex must be working.
I’m going to enjoy the holidays and stay positive. I always say, no matter how bad you have it someone else has probably got it worse. I’m hanging in there and hoping for the best for everyone that’s fighting.
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- December 22, 2012 at 1:28 am
Wow – you have been through a lot. I think your plan for the brain mets is a good one – just try zapping what you have and see what happens on Zel. I think you can do WBR afterwards if necessary, but it sounds to me like it is a later option rather than the first thing in many cases. I hope someone who has had experience with this will chime in.
So glad about the insurance. I am also glad to see that our SS system responded quickly and appropriately. Merry, merry Christmas and keep us posted about the Zel. Fen
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- December 22, 2012 at 1:28 am
Wow – you have been through a lot. I think your plan for the brain mets is a good one – just try zapping what you have and see what happens on Zel. I think you can do WBR afterwards if necessary, but it sounds to me like it is a later option rather than the first thing in many cases. I hope someone who has had experience with this will chime in.
So glad about the insurance. I am also glad to see that our SS system responded quickly and appropriately. Merry, merry Christmas and keep us posted about the Zel. Fen
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- December 22, 2012 at 2:19 am
Oh, Denise! Sweetie! Just the news you DIDN'T want to hear, right? Come here… let me give you a hug (((HUG)))
I suggest you have a good cry, punch your pillow, and let loose a primal scream. Then wash your face in cold water and remember that even brain mets are NOT a death sentence! A kick in the stomach–yes. A death sentence–no.
One should always choose SRS if possible because it usually has few side effects and doesn't damage the healthy brain tissue. If the tumor is inoperable or can't be reached by SRS or if there are too many mets for SRS, then consider whole brain radiation. SRS can be done either before or after WBR.
My brother had 5 brain mets when he was first diagnosed. One was already bleeding and they were afraid the others would start bleeding, so he had emergency WBR right away. It helped a lot. Then he started Zelboraf and the mets shrank even more. He did develop one small met (perhaps it started before he got on the Z) that was easily taken care of with SRS. He has had no new brain mets since then. You only have one met, so I would go with the SRS.
I don't understand why your doctor said that you are disqualified from all clinical trials because of the brain met. There are several clinical trials going on now where they specifically want to test people with brain mets. I don't know if there are any trials close to you, or if you would be elegible, but just having a brain met does not disqualify you from all trials.
As a matter of fact, I just found a new trial on clinicaltrials.gov. It's at UCSF and they are supposed to start recruiting in January. NCT01721603 "A Phase 2 Prospective Trial of Dabrafenib With Stereotactic Radiosurgery in BRAFV600E Melanoma Brain Metastases".
Thank God you got your SS disability and insurance so quickly! Thank God that you will have the optoin of starting on Z next week; it does work on brain mets. And call the trial coordinator for that new dabrafenib + SRS trial. God may have set that up specifically with you in mind. Who's to say?
Hang in there, girl!
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- December 22, 2012 at 3:07 am
Denise,
I'm so sorry how things have gone crazy! The trial that POW was talking about sounds really good. I don't know where you live but maybe you can find it closer to you.
My first brain met was 2,5 cm. The team that I go to met while I was still in the waiting room, not knowing what was going on. The receptionist announced that there was an emergency and the Drs were running late. I found out later that I was the emergency. Their thoughts originally was to do surgery because of the size of the tumor but mine was deep in the brain in the speech area. They felt that I didn't have options so I had SRS. I was on Dex from Oct to Feb 4th because of the edema and bleeding. Feb they did a crainectomy. I told them that it was now my choice and I realized I would loose my speech. The nuerosurgeon agreed. I had lost the mass in my body from the steroids and could not do much by myself. Within a month with physical therapy I was doing great!
The nuero came in to see me several times during the night. He was so excited because I was talking with no problem. I found out then that the tumor was 70% dead from the SRS.
A few months ago 2 more came back and they still agreed to do the SRS. I did have both of them bleed and while in the hospital they discovered 3 more. I tried Zel but it didn't work for me. Some of this could have been because I could only handle 2 X 2 a day. Next scan 2 weeks ago I now have approx 20 brain tumors.
They started WBR immediately and on 31st I'm starting Ipi.
I don't know if my decisions were right or not but I'm still fighting. SRS or Gamma knife can be done more that once – in different areas. WBR can only be done once. What ever decisions you make you just can't look backwards. So far I've gone almost 15 months.
Sending you hugs,
Linda
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- December 22, 2012 at 7:15 pm
Hi Linda,
I know your going through a lot with your Inability to take z and your brain mets, I think of you often and my. Heart goes out to you. One thing I’ve noticed about you is your strength and courage, I truly admire that and you inspire me. 🙂 I have read that the Ipi with radiation has had great results for people so I’m sending you all my positive thoughts. Thank you for your help. Hang in there and enjoy the holidays!!
Love Denise -
- December 22, 2012 at 7:15 pm
Hi Linda,
I know your going through a lot with your Inability to take z and your brain mets, I think of you often and my. Heart goes out to you. One thing I’ve noticed about you is your strength and courage, I truly admire that and you inspire me. 🙂 I have read that the Ipi with radiation has had great results for people so I’m sending you all my positive thoughts. Thank you for your help. Hang in there and enjoy the holidays!!
Love Denise -
- December 22, 2012 at 7:15 pm
Hi Linda,
I know your going through a lot with your Inability to take z and your brain mets, I think of you often and my. Heart goes out to you. One thing I’ve noticed about you is your strength and courage, I truly admire that and you inspire me. 🙂 I have read that the Ipi with radiation has had great results for people so I’m sending you all my positive thoughts. Thank you for your help. Hang in there and enjoy the holidays!!
Love Denise -
- December 22, 2012 at 3:07 am
Denise,
I'm so sorry how things have gone crazy! The trial that POW was talking about sounds really good. I don't know where you live but maybe you can find it closer to you.
My first brain met was 2,5 cm. The team that I go to met while I was still in the waiting room, not knowing what was going on. The receptionist announced that there was an emergency and the Drs were running late. I found out later that I was the emergency. Their thoughts originally was to do surgery because of the size of the tumor but mine was deep in the brain in the speech area. They felt that I didn't have options so I had SRS. I was on Dex from Oct to Feb 4th because of the edema and bleeding. Feb they did a crainectomy. I told them that it was now my choice and I realized I would loose my speech. The nuerosurgeon agreed. I had lost the mass in my body from the steroids and could not do much by myself. Within a month with physical therapy I was doing great!
The nuero came in to see me several times during the night. He was so excited because I was talking with no problem. I found out then that the tumor was 70% dead from the SRS.
A few months ago 2 more came back and they still agreed to do the SRS. I did have both of them bleed and while in the hospital they discovered 3 more. I tried Zel but it didn't work for me. Some of this could have been because I could only handle 2 X 2 a day. Next scan 2 weeks ago I now have approx 20 brain tumors.
They started WBR immediately and on 31st I'm starting Ipi.
I don't know if my decisions were right or not but I'm still fighting. SRS or Gamma knife can be done more that once – in different areas. WBR can only be done once. What ever decisions you make you just can't look backwards. So far I've gone almost 15 months.
Sending you hugs,
Linda
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- December 22, 2012 at 3:07 am
Denise,
I'm so sorry how things have gone crazy! The trial that POW was talking about sounds really good. I don't know where you live but maybe you can find it closer to you.
My first brain met was 2,5 cm. The team that I go to met while I was still in the waiting room, not knowing what was going on. The receptionist announced that there was an emergency and the Drs were running late. I found out later that I was the emergency. Their thoughts originally was to do surgery because of the size of the tumor but mine was deep in the brain in the speech area. They felt that I didn't have options so I had SRS. I was on Dex from Oct to Feb 4th because of the edema and bleeding. Feb they did a crainectomy. I told them that it was now my choice and I realized I would loose my speech. The nuerosurgeon agreed. I had lost the mass in my body from the steroids and could not do much by myself. Within a month with physical therapy I was doing great!
The nuero came in to see me several times during the night. He was so excited because I was talking with no problem. I found out then that the tumor was 70% dead from the SRS.
A few months ago 2 more came back and they still agreed to do the SRS. I did have both of them bleed and while in the hospital they discovered 3 more. I tried Zel but it didn't work for me. Some of this could have been because I could only handle 2 X 2 a day. Next scan 2 weeks ago I now have approx 20 brain tumors.
They started WBR immediately and on 31st I'm starting Ipi.
I don't know if my decisions were right or not but I'm still fighting. SRS or Gamma knife can be done more that once – in different areas. WBR can only be done once. What ever decisions you make you just can't look backwards. So far I've gone almost 15 months.
Sending you hugs,
Linda
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- December 22, 2012 at 6:43 pm
Thank you so much Pat!! I’m definitely looking into this trial. The trial that I wanted was the BRAF/mek combo but now won’t qualify for but this one sounds good. I wonder if they zap all the mets, makes sense if they can. San Francisco isn’t too far for Me. I’m gonna beat this you just watch! 🙂 -
- December 22, 2012 at 6:43 pm
Thank you so much Pat!! I’m definitely looking into this trial. The trial that I wanted was the BRAF/mek combo but now won’t qualify for but this one sounds good. I wonder if they zap all the mets, makes sense if they can. San Francisco isn’t too far for Me. I’m gonna beat this you just watch! 🙂 -
- December 22, 2012 at 6:43 pm
Thank you so much Pat!! I’m definitely looking into this trial. The trial that I wanted was the BRAF/mek combo but now won’t qualify for but this one sounds good. I wonder if they zap all the mets, makes sense if they can. San Francisco isn’t too far for Me. I’m gonna beat this you just watch! 🙂
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- December 22, 2012 at 2:19 am
Oh, Denise! Sweetie! Just the news you DIDN'T want to hear, right? Come here… let me give you a hug (((HUG)))
I suggest you have a good cry, punch your pillow, and let loose a primal scream. Then wash your face in cold water and remember that even brain mets are NOT a death sentence! A kick in the stomach–yes. A death sentence–no.
One should always choose SRS if possible because it usually has few side effects and doesn't damage the healthy brain tissue. If the tumor is inoperable or can't be reached by SRS or if there are too many mets for SRS, then consider whole brain radiation. SRS can be done either before or after WBR.
My brother had 5 brain mets when he was first diagnosed. One was already bleeding and they were afraid the others would start bleeding, so he had emergency WBR right away. It helped a lot. Then he started Zelboraf and the mets shrank even more. He did develop one small met (perhaps it started before he got on the Z) that was easily taken care of with SRS. He has had no new brain mets since then. You only have one met, so I would go with the SRS.
I don't understand why your doctor said that you are disqualified from all clinical trials because of the brain met. There are several clinical trials going on now where they specifically want to test people with brain mets. I don't know if there are any trials close to you, or if you would be elegible, but just having a brain met does not disqualify you from all trials.
As a matter of fact, I just found a new trial on clinicaltrials.gov. It's at UCSF and they are supposed to start recruiting in January. NCT01721603 "A Phase 2 Prospective Trial of Dabrafenib With Stereotactic Radiosurgery in BRAFV600E Melanoma Brain Metastases".
Thank God you got your SS disability and insurance so quickly! Thank God that you will have the optoin of starting on Z next week; it does work on brain mets. And call the trial coordinator for that new dabrafenib + SRS trial. God may have set that up specifically with you in mind. Who's to say?
Hang in there, girl!
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- December 22, 2012 at 2:19 am
Oh, Denise! Sweetie! Just the news you DIDN'T want to hear, right? Come here… let me give you a hug (((HUG)))
I suggest you have a good cry, punch your pillow, and let loose a primal scream. Then wash your face in cold water and remember that even brain mets are NOT a death sentence! A kick in the stomach–yes. A death sentence–no.
One should always choose SRS if possible because it usually has few side effects and doesn't damage the healthy brain tissue. If the tumor is inoperable or can't be reached by SRS or if there are too many mets for SRS, then consider whole brain radiation. SRS can be done either before or after WBR.
My brother had 5 brain mets when he was first diagnosed. One was already bleeding and they were afraid the others would start bleeding, so he had emergency WBR right away. It helped a lot. Then he started Zelboraf and the mets shrank even more. He did develop one small met (perhaps it started before he got on the Z) that was easily taken care of with SRS. He has had no new brain mets since then. You only have one met, so I would go with the SRS.
I don't understand why your doctor said that you are disqualified from all clinical trials because of the brain met. There are several clinical trials going on now where they specifically want to test people with brain mets. I don't know if there are any trials close to you, or if you would be elegible, but just having a brain met does not disqualify you from all trials.
As a matter of fact, I just found a new trial on clinicaltrials.gov. It's at UCSF and they are supposed to start recruiting in January. NCT01721603 "A Phase 2 Prospective Trial of Dabrafenib With Stereotactic Radiosurgery in BRAFV600E Melanoma Brain Metastases".
Thank God you got your SS disability and insurance so quickly! Thank God that you will have the optoin of starting on Z next week; it does work on brain mets. And call the trial coordinator for that new dabrafenib + SRS trial. God may have set that up specifically with you in mind. Who's to say?
Hang in there, girl!
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- December 22, 2012 at 2:53 am
Denise – I would definitely do some research. Try melanoma international.org -they have free webinars including about radiation treatment for Mel. I was diagnosed in April with 1 brain met, had it resolved by Zel, then had 2 mets zapped with SRS (aka gamma knife/cyber knife) in Oct.WBR can only be done ONCE, and is usually done in the presence of multiple mets (more than 4? 5? Not sure here or if it depends on the center). It carries significant risk of damage to healthy brain tissue and is usually pretty last resort or in an emergency situation. SRS can be done more than once if needed. It is a one- shot deal, high dose, one time treatment and usually pretty effective for Mel. Also, few side effects. I have had NO side effects.
“External beam radiation” is a term that means the radiation is coming from a machine outside your body, rather than some sort of implant or injection or pill used in other cancers. So gamma knife is a kind of Ext Beam Radiation. I wonder if he meant a low dose therapy given over days/weeks? I would really question effectiveness for Mel in the brain. My dad tried this almost 3 years go. It didn’t work for him. Enough said.
The radiation oncologist is the one who determines and designs the treatment plan so I bet this is who you are meeting with next week. Ask LOTS of questions! I hope I’m not scaring you. Lots of brain met survivors on here including me. I know it’s overwhelming. Glad they found it and are getting you taken care of quickly.
Amy
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- December 22, 2012 at 6:56 pm
Thanks Amy,
This is what I thought after reading here so often, I’m going to hold off on WBR until its absolutely necessary, my doctor said if I follow up with wbr after drs then it would kill off any cells that could grow but it could come back after a few months. The way my cancer is growing is kind of like one here and there with the most in my lungs so zapping them as they come up makes more sense, I don’t want to eliminate all my options right away. You didn’t scare me so no worries
🙂 I know you’ve been through a lot too so thank you for your help. Have a wonderful Christmas with your family!!
Love Denise -
- December 22, 2012 at 6:56 pm
Thanks Amy,
This is what I thought after reading here so often, I’m going to hold off on WBR until its absolutely necessary, my doctor said if I follow up with wbr after drs then it would kill off any cells that could grow but it could come back after a few months. The way my cancer is growing is kind of like one here and there with the most in my lungs so zapping them as they come up makes more sense, I don’t want to eliminate all my options right away. You didn’t scare me so no worries
🙂 I know you’ve been through a lot too so thank you for your help. Have a wonderful Christmas with your family!!
Love Denise -
- December 22, 2012 at 6:56 pm
Thanks Amy,
This is what I thought after reading here so often, I’m going to hold off on WBR until its absolutely necessary, my doctor said if I follow up with wbr after drs then it would kill off any cells that could grow but it could come back after a few months. The way my cancer is growing is kind of like one here and there with the most in my lungs so zapping them as they come up makes more sense, I don’t want to eliminate all my options right away. You didn’t scare me so no worries
🙂 I know you’ve been through a lot too so thank you for your help. Have a wonderful Christmas with your family!!
Love Denise
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- December 22, 2012 at 2:53 am
Denise – I would definitely do some research. Try melanoma international.org -they have free webinars including about radiation treatment for Mel. I was diagnosed in April with 1 brain met, had it resolved by Zel, then had 2 mets zapped with SRS (aka gamma knife/cyber knife) in Oct.WBR can only be done ONCE, and is usually done in the presence of multiple mets (more than 4? 5? Not sure here or if it depends on the center). It carries significant risk of damage to healthy brain tissue and is usually pretty last resort or in an emergency situation. SRS can be done more than once if needed. It is a one- shot deal, high dose, one time treatment and usually pretty effective for Mel. Also, few side effects. I have had NO side effects.
“External beam radiation” is a term that means the radiation is coming from a machine outside your body, rather than some sort of implant or injection or pill used in other cancers. So gamma knife is a kind of Ext Beam Radiation. I wonder if he meant a low dose therapy given over days/weeks? I would really question effectiveness for Mel in the brain. My dad tried this almost 3 years go. It didn’t work for him. Enough said.
The radiation oncologist is the one who determines and designs the treatment plan so I bet this is who you are meeting with next week. Ask LOTS of questions! I hope I’m not scaring you. Lots of brain met survivors on here including me. I know it’s overwhelming. Glad they found it and are getting you taken care of quickly.
Amy
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- December 22, 2012 at 2:53 am
Denise – I would definitely do some research. Try melanoma international.org -they have free webinars including about radiation treatment for Mel. I was diagnosed in April with 1 brain met, had it resolved by Zel, then had 2 mets zapped with SRS (aka gamma knife/cyber knife) in Oct.WBR can only be done ONCE, and is usually done in the presence of multiple mets (more than 4? 5? Not sure here or if it depends on the center). It carries significant risk of damage to healthy brain tissue and is usually pretty last resort or in an emergency situation. SRS can be done more than once if needed. It is a one- shot deal, high dose, one time treatment and usually pretty effective for Mel. Also, few side effects. I have had NO side effects.
“External beam radiation” is a term that means the radiation is coming from a machine outside your body, rather than some sort of implant or injection or pill used in other cancers. So gamma knife is a kind of Ext Beam Radiation. I wonder if he meant a low dose therapy given over days/weeks? I would really question effectiveness for Mel in the brain. My dad tried this almost 3 years go. It didn’t work for him. Enough said.
The radiation oncologist is the one who determines and designs the treatment plan so I bet this is who you are meeting with next week. Ask LOTS of questions! I hope I’m not scaring you. Lots of brain met survivors on here including me. I know it’s overwhelming. Glad they found it and are getting you taken care of quickly.
Amy
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- December 22, 2012 at 3:31 am
Denise, I'm so sorry you've received this news.
I have been really impressed by UCSF's radiation oncology team, who recommended and then gave me a 4-hour Gamma Knife treatment to 2 brain mets and 2 additional just-resected tumor beds in June 2011.
My impression is that my doctors believe Gamma Knife in most cases provides better patient outcomes, over WBR, for those cases when the situation in the brain matches what Gamma Knife system is designed to work on. But it's also true that every case is different. In my case, I have not been given WBR thus far.
Congrats on getting some positive news on the insurance front.
Keep moving ahead, which you're clearly doing.
– Kyle
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- December 22, 2012 at 3:31 am
Denise, I'm so sorry you've received this news.
I have been really impressed by UCSF's radiation oncology team, who recommended and then gave me a 4-hour Gamma Knife treatment to 2 brain mets and 2 additional just-resected tumor beds in June 2011.
My impression is that my doctors believe Gamma Knife in most cases provides better patient outcomes, over WBR, for those cases when the situation in the brain matches what Gamma Knife system is designed to work on. But it's also true that every case is different. In my case, I have not been given WBR thus far.
Congrats on getting some positive news on the insurance front.
Keep moving ahead, which you're clearly doing.
– Kyle
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- December 22, 2012 at 3:31 am
Denise, I'm so sorry you've received this news.
I have been really impressed by UCSF's radiation oncology team, who recommended and then gave me a 4-hour Gamma Knife treatment to 2 brain mets and 2 additional just-resected tumor beds in June 2011.
My impression is that my doctors believe Gamma Knife in most cases provides better patient outcomes, over WBR, for those cases when the situation in the brain matches what Gamma Knife system is designed to work on. But it's also true that every case is different. In my case, I have not been given WBR thus far.
Congrats on getting some positive news on the insurance front.
Keep moving ahead, which you're clearly doing.
– Kyle
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- December 22, 2012 at 6:02 pm
Hi Denise,
I am so sad to read this latest news for you, it just keeps coming at you! You are amazing in your courage and strength and appear to be handling all of it (medical, insurance and disability) so smoothly, you are truly a strong person and I think of you often and pray for the many things you are in need of to be delivered to you. Keeping a strong spirit is vital to survival and often times I feel it is half the battle. I'm glad you are living each day to the fullest and enjoying all you can while you are feeling well and able to do so.
I have no medical help for you as I am unfamiliar with most of your situation and medicines you are taking. I just want you to know I'm thinking of you, sending strength and healing thoughts to you and wishing you a beautiful holiday with family and friends. Good luck for all the upcoming treatments and continue to keep us updated with your progress.
Take care,
Swanee
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- December 22, 2012 at 6:02 pm
Hi Denise,
I am so sad to read this latest news for you, it just keeps coming at you! You are amazing in your courage and strength and appear to be handling all of it (medical, insurance and disability) so smoothly, you are truly a strong person and I think of you often and pray for the many things you are in need of to be delivered to you. Keeping a strong spirit is vital to survival and often times I feel it is half the battle. I'm glad you are living each day to the fullest and enjoying all you can while you are feeling well and able to do so.
I have no medical help for you as I am unfamiliar with most of your situation and medicines you are taking. I just want you to know I'm thinking of you, sending strength and healing thoughts to you and wishing you a beautiful holiday with family and friends. Good luck for all the upcoming treatments and continue to keep us updated with your progress.
Take care,
Swanee
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- December 22, 2012 at 6:02 pm
Hi Denise,
I am so sad to read this latest news for you, it just keeps coming at you! You are amazing in your courage and strength and appear to be handling all of it (medical, insurance and disability) so smoothly, you are truly a strong person and I think of you often and pray for the many things you are in need of to be delivered to you. Keeping a strong spirit is vital to survival and often times I feel it is half the battle. I'm glad you are living each day to the fullest and enjoying all you can while you are feeling well and able to do so.
I have no medical help for you as I am unfamiliar with most of your situation and medicines you are taking. I just want you to know I'm thinking of you, sending strength and healing thoughts to you and wishing you a beautiful holiday with family and friends. Good luck for all the upcoming treatments and continue to keep us updated with your progress.
Take care,
Swanee
-
- December 22, 2012 at 10:05 pm
Hi, Denise. I too was diagnosed with brain mets last Christmas. I saw a neurosurgeon/radiation oncologist. The 1st thing he asked me was if I had WBR. When I said "no" he replied "good thing". The course of action was to continue systemic treatment with Zel and Gamma Knife any new brain mets that might turn up. Since then we've done this 5 times. I'm also on Dexamethasone and am able to run a few miles almost every day. I'm feeling better now than at any point since my original diagnosis just over 3 years ago. The zel has reduced my body tumors (knee bone, lungs, stomach) and stabilzed the original brain mets. But new brain mets seem to be developing from time to time. I have them gamma knifed. So, far this course has proven to work very well for me.
Best of luck and Happy Holidays to you
FrankD Brooklyn
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- December 22, 2012 at 10:05 pm
Hi, Denise. I too was diagnosed with brain mets last Christmas. I saw a neurosurgeon/radiation oncologist. The 1st thing he asked me was if I had WBR. When I said "no" he replied "good thing". The course of action was to continue systemic treatment with Zel and Gamma Knife any new brain mets that might turn up. Since then we've done this 5 times. I'm also on Dexamethasone and am able to run a few miles almost every day. I'm feeling better now than at any point since my original diagnosis just over 3 years ago. The zel has reduced my body tumors (knee bone, lungs, stomach) and stabilzed the original brain mets. But new brain mets seem to be developing from time to time. I have them gamma knifed. So, far this course has proven to work very well for me.
Best of luck and Happy Holidays to you
FrankD Brooklyn
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- December 22, 2012 at 10:05 pm
Hi, Denise. I too was diagnosed with brain mets last Christmas. I saw a neurosurgeon/radiation oncologist. The 1st thing he asked me was if I had WBR. When I said "no" he replied "good thing". The course of action was to continue systemic treatment with Zel and Gamma Knife any new brain mets that might turn up. Since then we've done this 5 times. I'm also on Dexamethasone and am able to run a few miles almost every day. I'm feeling better now than at any point since my original diagnosis just over 3 years ago. The zel has reduced my body tumors (knee bone, lungs, stomach) and stabilzed the original brain mets. But new brain mets seem to be developing from time to time. I have them gamma knifed. So, far this course has proven to work very well for me.
Best of luck and Happy Holidays to you
FrankD Brooklyn
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- December 23, 2012 at 12:52 am
My husband was diagnosed with brain mets in March, 13 tumors. He did have WBR, 17 treatments to be exact…. he did just fine, felt like CRAP afterward and had the miserable radiation side effects, but none of the long term WBR side effects that people worry about. About 2-3 wks after final radiation dosage he had an MRI which showed it did not work and the tumors were a little bigger…. now we believe this is why he felt horrible, being weaned off decadron, but tumors were bigger. Anyway, he has now been on Zelboraf for 7 mos and is doing FANTASTIC!! I think this goes to show, EVERYONE is different, some people may develop a resistance to Z sooner, some may not develop one at all, just like for some the radiation does work and for people like my husband, it did not. It's really a roll of the dice, sucks, but hang in there! There are truly some remarkable stories, just don't give up and like I mentioned, what works for one, may not work for another.
Wishing you and all the melonoma warriors a Christmas miracle!
Stay strong & positive, Kelly 🙂
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- December 23, 2012 at 12:52 am
My husband was diagnosed with brain mets in March, 13 tumors. He did have WBR, 17 treatments to be exact…. he did just fine, felt like CRAP afterward and had the miserable radiation side effects, but none of the long term WBR side effects that people worry about. About 2-3 wks after final radiation dosage he had an MRI which showed it did not work and the tumors were a little bigger…. now we believe this is why he felt horrible, being weaned off decadron, but tumors were bigger. Anyway, he has now been on Zelboraf for 7 mos and is doing FANTASTIC!! I think this goes to show, EVERYONE is different, some people may develop a resistance to Z sooner, some may not develop one at all, just like for some the radiation does work and for people like my husband, it did not. It's really a roll of the dice, sucks, but hang in there! There are truly some remarkable stories, just don't give up and like I mentioned, what works for one, may not work for another.
Wishing you and all the melonoma warriors a Christmas miracle!
Stay strong & positive, Kelly 🙂
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- December 23, 2012 at 12:52 am
My husband was diagnosed with brain mets in March, 13 tumors. He did have WBR, 17 treatments to be exact…. he did just fine, felt like CRAP afterward and had the miserable radiation side effects, but none of the long term WBR side effects that people worry about. About 2-3 wks after final radiation dosage he had an MRI which showed it did not work and the tumors were a little bigger…. now we believe this is why he felt horrible, being weaned off decadron, but tumors were bigger. Anyway, he has now been on Zelboraf for 7 mos and is doing FANTASTIC!! I think this goes to show, EVERYONE is different, some people may develop a resistance to Z sooner, some may not develop one at all, just like for some the radiation does work and for people like my husband, it did not. It's really a roll of the dice, sucks, but hang in there! There are truly some remarkable stories, just don't give up and like I mentioned, what works for one, may not work for another.
Wishing you and all the melonoma warriors a Christmas miracle!
Stay strong & positive, Kelly 🙂
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- December 26, 2012 at 10:36 pm
Hi Denise,
I know that many on here won't agree with me but in addition to what you are doing, do some searching on the internet regarding the ketogenic diet….trials, etc. I would suggest at the very least to avoid sugar and limit carbohydrates in a big way, if possible. You can talk to your oncologist about it. The kteogenic diet trials so far have been involving only a small amount of people and I have only seen one so far that is recruiting melanoma patients. Either way, I hope that things turn around for you. Best wishes for a long life.
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- December 26, 2012 at 10:36 pm
Hi Denise,
I know that many on here won't agree with me but in addition to what you are doing, do some searching on the internet regarding the ketogenic diet….trials, etc. I would suggest at the very least to avoid sugar and limit carbohydrates in a big way, if possible. You can talk to your oncologist about it. The kteogenic diet trials so far have been involving only a small amount of people and I have only seen one so far that is recruiting melanoma patients. Either way, I hope that things turn around for you. Best wishes for a long life.
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- December 26, 2012 at 10:36 pm
Hi Denise,
I know that many on here won't agree with me but in addition to what you are doing, do some searching on the internet regarding the ketogenic diet….trials, etc. I would suggest at the very least to avoid sugar and limit carbohydrates in a big way, if possible. You can talk to your oncologist about it. The kteogenic diet trials so far have been involving only a small amount of people and I have only seen one so far that is recruiting melanoma patients. Either way, I hope that things turn around for you. Best wishes for a long life.
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- January 3, 2013 at 9:49 am
Hi Denise
Sounds like I have similar to you. I was initially diagnosed with malaigant melanoma on feb 2010, mole i had for forvever remover from stomach which turned out to be a melanoma stage 3b. It returned again at primary site in july 2011, and again removed. i have beenn completely well and just had surgery for my treatment, nothing else. Then at end of Novemver 2012 i started having headaches and felt a liitle under the weather, thought it was just the start of winter flu, but headaches got worse, ended up in hopsital where they scanned me and told me that my melanoma has spread to my brain and i have tumours there now. I go for steriotactic radiothereapy on them on 9th jan 2013- not soon enough!! its been a long wait.
I too am on Dexamethasone (4 x 2mg a day) which is something in itself to getting used to. at least my headache has gone. how are you managing with taking the steriods? My face has swelled and it really dosesn't look like me.
I hope everything is going well for you at moment
Heidi
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- January 3, 2013 at 9:49 am
Hi Denise
Sounds like I have similar to you. I was initially diagnosed with malaigant melanoma on feb 2010, mole i had for forvever remover from stomach which turned out to be a melanoma stage 3b. It returned again at primary site in july 2011, and again removed. i have beenn completely well and just had surgery for my treatment, nothing else. Then at end of Novemver 2012 i started having headaches and felt a liitle under the weather, thought it was just the start of winter flu, but headaches got worse, ended up in hopsital where they scanned me and told me that my melanoma has spread to my brain and i have tumours there now. I go for steriotactic radiothereapy on them on 9th jan 2013- not soon enough!! its been a long wait.
I too am on Dexamethasone (4 x 2mg a day) which is something in itself to getting used to. at least my headache has gone. how are you managing with taking the steriods? My face has swelled and it really dosesn't look like me.
I hope everything is going well for you at moment
Heidi
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- January 17, 2013 at 6:06 am
Hi Heidi,
I didn’t see this post until today, Im not getting the email notifications. How did the srs go? From what I understand its not bad. Do you only have the one in your brain? They wouldn’t do srs on me because my tumor load is pretty high all over my body, so they thought wbr was best. I’ve just recently quit the steroids, although I took half one yesterday cuz my head hurt. I’m still having headaches so I’m not sure if its working or not. The z is working on the tumor on my arm and hopefully everywhere else. If you see this email me or facebook, denise orff kirley, [email protected] -
- January 17, 2013 at 6:06 am
Hi Heidi,
I didn’t see this post until today, Im not getting the email notifications. How did the srs go? From what I understand its not bad. Do you only have the one in your brain? They wouldn’t do srs on me because my tumor load is pretty high all over my body, so they thought wbr was best. I’ve just recently quit the steroids, although I took half one yesterday cuz my head hurt. I’m still having headaches so I’m not sure if its working or not. The z is working on the tumor on my arm and hopefully everywhere else. If you see this email me or facebook, denise orff kirley, [email protected] -
- January 21, 2013 at 10:46 am
I have 4. The treatment wasn't too bad. Had 6 in total over 4 visits over one week. Glad its done now and hope it all does what its supoosed too. Just A long wait to find out. They haven't found any other spread to anywhere else, just the tumors in my brain. Been tired since. The steriods are taking some getting used to, and I'm on the high dose at the mo because i just had the srt. Hope everything else ok with you. I hope its all working for you too!!! Take care. Heidi
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- January 21, 2013 at 10:46 am
I have 4. The treatment wasn't too bad. Had 6 in total over 4 visits over one week. Glad its done now and hope it all does what its supoosed too. Just A long wait to find out. They haven't found any other spread to anywhere else, just the tumors in my brain. Been tired since. The steriods are taking some getting used to, and I'm on the high dose at the mo because i just had the srt. Hope everything else ok with you. I hope its all working for you too!!! Take care. Heidi
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- January 21, 2013 at 10:46 am
I have 4. The treatment wasn't too bad. Had 6 in total over 4 visits over one week. Glad its done now and hope it all does what its supoosed too. Just A long wait to find out. They haven't found any other spread to anywhere else, just the tumors in my brain. Been tired since. The steriods are taking some getting used to, and I'm on the high dose at the mo because i just had the srt. Hope everything else ok with you. I hope its all working for you too!!! Take care. Heidi
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- January 17, 2013 at 6:06 am
Hi Heidi,
I didn’t see this post until today, Im not getting the email notifications. How did the srs go? From what I understand its not bad. Do you only have the one in your brain? They wouldn’t do srs on me because my tumor load is pretty high all over my body, so they thought wbr was best. I’ve just recently quit the steroids, although I took half one yesterday cuz my head hurt. I’m still having headaches so I’m not sure if its working or not. The z is working on the tumor on my arm and hopefully everywhere else. If you see this email me or facebook, denise orff kirley, [email protected]
-
- January 3, 2013 at 9:49 am
Hi Denise
Sounds like I have similar to you. I was initially diagnosed with malaigant melanoma on feb 2010, mole i had for forvever remover from stomach which turned out to be a melanoma stage 3b. It returned again at primary site in july 2011, and again removed. i have beenn completely well and just had surgery for my treatment, nothing else. Then at end of Novemver 2012 i started having headaches and felt a liitle under the weather, thought it was just the start of winter flu, but headaches got worse, ended up in hopsital where they scanned me and told me that my melanoma has spread to my brain and i have tumours there now. I go for steriotactic radiothereapy on them on 9th jan 2013- not soon enough!! its been a long wait.
I too am on Dexamethasone (4 x 2mg a day) which is something in itself to getting used to. at least my headache has gone. how are you managing with taking the steriods? My face has swelled and it really dosesn't look like me.
I hope everything is going well for you at moment
Heidi
-
- January 3, 2013 at 9:50 am
Hi Denise
Sounds like I have similar to you. I was initially diagnosed with malaigant melanoma on feb 2010, mole i had for forvever remover from stomach which turned out to be a melanoma stage 3b. It returned again at primary site in july 2011, and again removed. i have beenn completely well and just had surgery for my treatment, nothing else. Then at end of Novemver 2012 i started having headaches and felt a liitle under the weather, thought it was just the start of winter flu, but headaches got worse, ended up in hopsital where they scanned me and told me that my melanoma has spread to my brain and i have tumours there now. I go for steriotactic radiothereapy on them on 9th jan 2013- not soon enough!! its been a long wait.
I too am on Dexamethasone (4 x 2mg a day) which is something in itself to getting used to. at least my headache has gone. how are you managing with taking the steriods? My face has swelled and it really dosesn't look like me.
I hope everything is going well for you at moment
Heidi
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- January 3, 2013 at 9:50 am
Hi Denise
Sounds like I have similar to you. I was initially diagnosed with malaigant melanoma on feb 2010, mole i had for forvever remover from stomach which turned out to be a melanoma stage 3b. It returned again at primary site in july 2011, and again removed. i have beenn completely well and just had surgery for my treatment, nothing else. Then at end of Novemver 2012 i started having headaches and felt a liitle under the weather, thought it was just the start of winter flu, but headaches got worse, ended up in hopsital where they scanned me and told me that my melanoma has spread to my brain and i have tumours there now. I go for steriotactic radiothereapy on them on 9th jan 2013- not soon enough!! its been a long wait.
I too am on Dexamethasone (4 x 2mg a day) which is something in itself to getting used to. at least my headache has gone. how are you managing with taking the steriods? My face has swelled and it really dosesn't look like me.
I hope everything is going well for you at moment
Heidi
-
- January 3, 2013 at 9:50 am
Hi Denise
Sounds like I have similar to you. I was initially diagnosed with malaigant melanoma on feb 2010, mole i had for forvever remover from stomach which turned out to be a melanoma stage 3b. It returned again at primary site in july 2011, and again removed. i have beenn completely well and just had surgery for my treatment, nothing else. Then at end of Novemver 2012 i started having headaches and felt a liitle under the weather, thought it was just the start of winter flu, but headaches got worse, ended up in hopsital where they scanned me and told me that my melanoma has spread to my brain and i have tumours there now. I go for steriotactic radiothereapy on them on 9th jan 2013- not soon enough!! its been a long wait.
I too am on Dexamethasone (4 x 2mg a day) which is something in itself to getting used to. at least my headache has gone. how are you managing with taking the steriods? My face has swelled and it really dosesn't look like me.
I hope everything is going well for you at moment
Heidi
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