› Forums › General Melanoma Community › Update on NIH Trial Process – Major Disappointment
- This topic has 30 replies, 12 voices, and was last updated 13 years, 5 months ago by
Vermont_Donna.
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- July 14, 2011 at 4:16 pm
Just thought I would post my latest setback in trying to enter a T-cell targeted therapy clinical trial at NIH. NIH requested CT scans and brain MRI last week. After over 10 years of brain-free mets, I got the surprise of my life. Opinion of radiologist: " Multiple bilateral cerebral hemispheric metastases." Initial count is greater than 10, which exceeds the NIH acceptance criteria by at least 7 (3 or fewer mets with none greater than 1cm. in size).
Just thought I would post my latest setback in trying to enter a T-cell targeted therapy clinical trial at NIH. NIH requested CT scans and brain MRI last week. After over 10 years of brain-free mets, I got the surprise of my life. Opinion of radiologist: " Multiple bilateral cerebral hemispheric metastases." Initial count is greater than 10, which exceeds the NIH acceptance criteria by at least 7 (3 or fewer mets with none greater than 1cm. in size). The report is preliminary so there is little to no detail on size but mets appear scattered from front to back primarily on the right side. I have had no headaches or brain fog to alert me to a problem, which makes the diagnosis that much more frustrating.
So I start a new journey into the unknown. I've done some research on brain mets but would appreciate comments from those of you familiar with multiple brain mets, specifically what questions I should ask the radiation oncologist when we meet next week for a consultation. It looks to me like my only option is Whole Brain Radiotherapy (WBRT). If you or your spouse/partner/family have had experience with this treatment, would like to know what to expect in the way of side effects. I'm sure they vary from patient to patient but for now I have to start somewhere. Thanks for sharing your experiences in advance.
Bruce in New Hampshire
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- July 14, 2011 at 8:37 pm
Bruce,
I am so sorry to hear about the brain mets. I don't have any information to share but wanted to let you know that your in my thoughts and prayers.
Linda
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- July 14, 2011 at 9:06 pm
Hi Bruce,
I have no experience with WBR but I wanted to let you know that you are in my thoughts and prayers. I think our paths have crossed a few times in the past. I know we were both participating in a GM-CSF trial in 2005.
I bet you were stunned to have multiple brain mets and no symptoms. I hate melanoma! When was your last brain MRI?
You've been in many, many battles so that part is not new for you. Please keep us updated. I'm so sorry.
Stay Strong
KingStage IV 7/05 Liver mets
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- July 14, 2011 at 9:35 pm
Hi King,
I had radiation treatment on my back following surgery in the fall of 2004, followed by the GM-CSF clinical trial in all of 2005. I was melanoma free from Sept. 2004 to December 2008. I always thought that the combination of radiation and GM-CSF kept me clear for those 4 years and 3 months. How I wish I could get there again!
My last brain MRI was 6/3/10, prior to starting the Ipilimumab clinical trial. I now wonder if the ipi didn't trigger the start of the brain mets. Probably not as I learn brain mets are not unusual for melanoma patients. But nevertheless I plan to put up a good fight – again! Thanks for responding and I wish you all the best.
Bruce
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- July 14, 2011 at 9:35 pm
Hi King,
I had radiation treatment on my back following surgery in the fall of 2004, followed by the GM-CSF clinical trial in all of 2005. I was melanoma free from Sept. 2004 to December 2008. I always thought that the combination of radiation and GM-CSF kept me clear for those 4 years and 3 months. How I wish I could get there again!
My last brain MRI was 6/3/10, prior to starting the Ipilimumab clinical trial. I now wonder if the ipi didn't trigger the start of the brain mets. Probably not as I learn brain mets are not unusual for melanoma patients. But nevertheless I plan to put up a good fight – again! Thanks for responding and I wish you all the best.
Bruce
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- July 14, 2011 at 9:06 pm
Hi Bruce,
I have no experience with WBR but I wanted to let you know that you are in my thoughts and prayers. I think our paths have crossed a few times in the past. I know we were both participating in a GM-CSF trial in 2005.
I bet you were stunned to have multiple brain mets and no symptoms. I hate melanoma! When was your last brain MRI?
You've been in many, many battles so that part is not new for you. Please keep us updated. I'm so sorry.
Stay Strong
KingStage IV 7/05 Liver mets
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- July 14, 2011 at 10:06 pm
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- July 14, 2011 at 10:06 pm
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- July 14, 2011 at 10:21 pm
Hi Bruce,
I stand with Linda, King, and Teodora i prayer for you. I'm sorry about this development.
Lord, in Your mercy, be with Bruce now. Please open doors and grant wisdom and knowledge for him and his medical team. Thank You. Amen.
Grace and peace,
Carol
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- July 14, 2011 at 10:21 pm
Hi Bruce,
I stand with Linda, King, and Teodora i prayer for you. I'm sorry about this development.
Lord, in Your mercy, be with Bruce now. Please open doors and grant wisdom and knowledge for him and his medical team. Thank You. Amen.
Grace and peace,
Carol
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- July 14, 2011 at 11:08 pm
Bruce, very sorry to hear about this news. My wife got the same shock just before we went to NIH. Her tumors resolved with an emergency craniotomy and Cyberknife. I hae been doing a lot of internet research on whole brain radiation in anticipation of my wife at some point being in the exact same spot you are in. We fully expect her to light up like a Christmas tree at some point – either on her next brain MRI scan on August 1 or a subsequent one. Once it gets to the brain it's about management, not erradication. You have to weigh the costs of management versus life quality.
Cyberknife isn't good for that many tumors. Our radiation oncologist did say that one option with WBRT is to "go low and slow". I'd ask about that – what is the standard treatment and are there alternates using less dose over longer time periods. I have found very little to no evidence that WBRT on its own extends life. There are obvious side effects – even with SRS (Cyberknife or Gammaknife) you lose some brain function. So I'd ask a lot about that. Especially given location and if they would have more dose going to some areas than others.
There does seem to be some research on combining WBRT with a chemo/immuno cocktail which includes Temodar – known to pass the blood brain barrier, or some other eperimental drugs. So I'd ask your melanoma doc or radiation oncologist about that. My wife is on Temodar. Here is one study:
http://clinicaltrials.gov/ct2/show/NCT00649207?term=whole+brain+radiation&recr=Open&rank=3
The other thing I would advise ASAP is to get on some prophylactic anti seizure meds (like Kepra) and/or steroids – consult with your oncologist. If you have a seizure you are locked out of virtually any trial I can find.
I wish you the best on this tough news and for you to keep up your spirits.
Nick
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- July 14, 2011 at 11:33 pm
this is what our radiation oncologist meant by "Low and slow":
Whole-Brain Radiation Therapy
Whole brain radiation therapy is widely available and has been used for decades in the treatment of patients with multiple brain metastases. Patients with poor (low) KPS scores and progressive systemic disease often receive WBRT alone. In patients with good (high) KPS scores and stable disease, WBRT is often considered if there are new or recurrent metastases following tumor resection or radiosurgery. Based on results obtained from the Radiation Therapy Oncology Group trials,[6] current radiation doses are either 20 Gy in five fractions or 30 Gy in 10 fractions. In patients with longer expected survival (that is, 1 year or more), a prolonged fractionation regimen of 40 Gy in 2-Gy fractions may decrease radiation-induced morbidity.[5,10,11]
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- July 14, 2011 at 11:33 pm
this is what our radiation oncologist meant by "Low and slow":
Whole-Brain Radiation Therapy
Whole brain radiation therapy is widely available and has been used for decades in the treatment of patients with multiple brain metastases. Patients with poor (low) KPS scores and progressive systemic disease often receive WBRT alone. In patients with good (high) KPS scores and stable disease, WBRT is often considered if there are new or recurrent metastases following tumor resection or radiosurgery. Based on results obtained from the Radiation Therapy Oncology Group trials,[6] current radiation doses are either 20 Gy in five fractions or 30 Gy in 10 fractions. In patients with longer expected survival (that is, 1 year or more), a prolonged fractionation regimen of 40 Gy in 2-Gy fractions may decrease radiation-induced morbidity.[5,10,11]
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- July 15, 2011 at 12:26 pm
Nick,
Thanks for your response and details on options for your wife. This is exactly what I had hoped to see. I had not even considered a clinical trial using WBRT and Temodar, but this is a great suggestion. I was just so focused on the T-cell targeted therapy trial that this option slipped my mind. I have printed out the clinical trial info and will bring it to my consultation next week along with your other suggestions. Thanks so much.
Bruce
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- July 15, 2011 at 12:26 pm
Nick,
Thanks for your response and details on options for your wife. This is exactly what I had hoped to see. I had not even considered a clinical trial using WBRT and Temodar, but this is a great suggestion. I was just so focused on the T-cell targeted therapy trial that this option slipped my mind. I have printed out the clinical trial info and will bring it to my consultation next week along with your other suggestions. Thanks so much.
Bruce
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- July 14, 2011 at 11:08 pm
Bruce, very sorry to hear about this news. My wife got the same shock just before we went to NIH. Her tumors resolved with an emergency craniotomy and Cyberknife. I hae been doing a lot of internet research on whole brain radiation in anticipation of my wife at some point being in the exact same spot you are in. We fully expect her to light up like a Christmas tree at some point – either on her next brain MRI scan on August 1 or a subsequent one. Once it gets to the brain it's about management, not erradication. You have to weigh the costs of management versus life quality.
Cyberknife isn't good for that many tumors. Our radiation oncologist did say that one option with WBRT is to "go low and slow". I'd ask about that – what is the standard treatment and are there alternates using less dose over longer time periods. I have found very little to no evidence that WBRT on its own extends life. There are obvious side effects – even with SRS (Cyberknife or Gammaknife) you lose some brain function. So I'd ask a lot about that. Especially given location and if they would have more dose going to some areas than others.
There does seem to be some research on combining WBRT with a chemo/immuno cocktail which includes Temodar – known to pass the blood brain barrier, or some other eperimental drugs. So I'd ask your melanoma doc or radiation oncologist about that. My wife is on Temodar. Here is one study:
http://clinicaltrials.gov/ct2/show/NCT00649207?term=whole+brain+radiation&recr=Open&rank=3
The other thing I would advise ASAP is to get on some prophylactic anti seizure meds (like Kepra) and/or steroids – consult with your oncologist. If you have a seizure you are locked out of virtually any trial I can find.
I wish you the best on this tough news and for you to keep up your spirits.
Nick
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- July 15, 2011 at 3:56 am
Hi Bruce,
I'm sorry to hear about this latest setback! I don't have any experience with treatment for brain mets, but I just wanted to let you know that you're in my prayers. I'm sure there are others on this board that will chime in with suggestions for questions for the rad onc next week.
Rocco, Stage IV, 8/2005
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- July 15, 2011 at 3:56 am
Hi Bruce,
I'm sorry to hear about this latest setback! I don't have any experience with treatment for brain mets, but I just wanted to let you know that you're in my prayers. I'm sure there are others on this board that will chime in with suggestions for questions for the rad onc next week.
Rocco, Stage IV, 8/2005
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- July 15, 2011 at 4:15 am
Hi Bruce,
Sorry to hear you're in this boat (brain mets).
My radiation oncologist has both cyberknife and gamma knife at her disposal. She said she can treat many more small brain mets with gamma knife than is possible with Cyberknife. Therefor in many cases they are able to do Gamma Knife instead of WBR (where if they only had Cyberknife, they definitely would be doing WBR). So that's something to look into. You might want to see if Dartmouth has Gamma Knife, and if not where the nearest one is, so you're prepared when you talk to your doc next week.
I just had two brain mets resected in June and two more treated with gamma knife (two weeks later).
If I'm in a position where my docs give me the option to do Gamma Knife or WBR, I would choose Gamma Knife. It did take a lot out of me, I'm only just recovering my stamina a month later.
Brain mets are scar but I take hope from those on this board who've had brain mets and yet been able to keep going.
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- July 15, 2011 at 4:15 am
Hi Bruce,
Sorry to hear you're in this boat (brain mets).
My radiation oncologist has both cyberknife and gamma knife at her disposal. She said she can treat many more small brain mets with gamma knife than is possible with Cyberknife. Therefor in many cases they are able to do Gamma Knife instead of WBR (where if they only had Cyberknife, they definitely would be doing WBR). So that's something to look into. You might want to see if Dartmouth has Gamma Knife, and if not where the nearest one is, so you're prepared when you talk to your doc next week.
I just had two brain mets resected in June and two more treated with gamma knife (two weeks later).
If I'm in a position where my docs give me the option to do Gamma Knife or WBR, I would choose Gamma Knife. It did take a lot out of me, I'm only just recovering my stamina a month later.
Brain mets are scar but I take hope from those on this board who've had brain mets and yet been able to keep going.
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- July 15, 2011 at 4:00 pm
Bruce, I am very sorry to hear that you are now in the brain met club, in addition to the options above, the following chemotherapies have been shown to cross the blood/brain barrier. The BRAF inhibitor made by GSK (search posts by NicOz) and yervoy(ipilimumab) are drugs that have shown to be effective.
Prayers with you.
John
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- July 15, 2011 at 4:00 pm
Bruce, I am very sorry to hear that you are now in the brain met club, in addition to the options above, the following chemotherapies have been shown to cross the blood/brain barrier. The BRAF inhibitor made by GSK (search posts by NicOz) and yervoy(ipilimumab) are drugs that have shown to be effective.
Prayers with you.
John
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- July 15, 2011 at 4:36 pm
Bruce,
I am so disappointed for you, I was shocked when I opened your post. Brain mets are such a test for us and, unfortunately, all I can offer you is my thoughts and positive vibes. It sounds like you have been getting some good advice…take care, I am thinking of you. Val xx
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- July 15, 2011 at 4:36 pm
Bruce,
I am so disappointed for you, I was shocked when I opened your post. Brain mets are such a test for us and, unfortunately, all I can offer you is my thoughts and positive vibes. It sounds like you have been getting some good advice…take care, I am thinking of you. Val xx
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- July 17, 2011 at 12:43 am
Sorry to hear that Bruce. I hope others suggestions here can work out for you.
warren g
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- July 21, 2011 at 12:36 pm
Dear Bruce,
I am so sorry to hear of this startling discovery…..I hope that your team and you decide on a treatment that is effective quickly and that you can get back the TIL treatment…..
Thinking of you,
Vermont_Donna, stage 3a, NED
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- July 21, 2011 at 12:36 pm
Dear Bruce,
I am so sorry to hear of this startling discovery…..I hope that your team and you decide on a treatment that is effective quickly and that you can get back the TIL treatment…..
Thinking of you,
Vermont_Donna, stage 3a, NED
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