@bruce-in-nh
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- September 26, 2011 at 9:05 pm
Hi Val,
Thanks so much for keeping us posted on your therapy at NIH. I am following your results closely in hopes the Temodar chemo I am taking will knock down the brain mets to 3 or less so I can join you in getting full body systemic treatment. But one step at a time.
Keep up your positive attitude, and my thoughts and prayers are with you daily.
Bruce
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- September 26, 2011 at 9:05 pm
Hi Val,
Thanks so much for keeping us posted on your therapy at NIH. I am following your results closely in hopes the Temodar chemo I am taking will knock down the brain mets to 3 or less so I can join you in getting full body systemic treatment. But one step at a time.
Keep up your positive attitude, and my thoughts and prayers are with you daily.
Bruce
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- September 19, 2011 at 12:11 pm
Hang in there, Val! You are so brave to have undergone this treatment at NIH. Wishing you a speedy recovery!
Bruce
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- September 19, 2011 at 12:11 pm
Hang in there, Val! You are so brave to have undergone this treatment at NIH. Wishing you a speedy recovery!
Bruce
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- September 2, 2011 at 11:24 am
I would advise you to get a brain MRI ASAP. I have been fighting melanoma for 10+ years and always had clear brain scans until July when multiple melanoma metastases showed up on my brain MRI. I started Whole Brain Radiation Treatment (WBRT) in late July but scheduled a second brain MRI for August 4th just to make sure the mets were there. Unfortunately they were still there. I completed the WBRT on August 10th, then another brain MRI on August 29th. On August 31st I met with my Radiation Oncologist who confirmed the mets are still present.
Prior to all this, I went through two 10 week infusion programs of Ipilimumab in 2010 and 2011 in the clinical trial prior to FDA approval as Yervoy. Yesterday I ran into another MPIPer at a meeting who told me that he too now has brain mets after completing Ipilimumab infusions. I'm not suggesting that there is a direct correlation here between Ipilimumab and subsequent brain mets, but I plan to discuss this with my oncologist next week as we develop a new plan of attack to knock down these mets to enable me to get to NIH for the t-cell replacement therapy clinical trial (criteria requires 3 or fewer brain mets to qualify for this trial).
Best of luck to you and keep fighting!
Bruce
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- September 2, 2011 at 11:24 am
I would advise you to get a brain MRI ASAP. I have been fighting melanoma for 10+ years and always had clear brain scans until July when multiple melanoma metastases showed up on my brain MRI. I started Whole Brain Radiation Treatment (WBRT) in late July but scheduled a second brain MRI for August 4th just to make sure the mets were there. Unfortunately they were still there. I completed the WBRT on August 10th, then another brain MRI on August 29th. On August 31st I met with my Radiation Oncologist who confirmed the mets are still present.
Prior to all this, I went through two 10 week infusion programs of Ipilimumab in 2010 and 2011 in the clinical trial prior to FDA approval as Yervoy. Yesterday I ran into another MPIPer at a meeting who told me that he too now has brain mets after completing Ipilimumab infusions. I'm not suggesting that there is a direct correlation here between Ipilimumab and subsequent brain mets, but I plan to discuss this with my oncologist next week as we develop a new plan of attack to knock down these mets to enable me to get to NIH for the t-cell replacement therapy clinical trial (criteria requires 3 or fewer brain mets to qualify for this trial).
Best of luck to you and keep fighting!
Bruce
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- November 5, 2011 at 12:31 pm
Linda, you pose an interesting question. I just entered my 12th year fighting melanoma, and I have always had clear brain MRI's until this July when my brain scans showed too many brain mets to count. I was absolutely floored. So I completed Whole Brain Radiation Treatment (WBRT) followed by a 42 day Temodar chemo program. My next brain MRI is this Monday the 7th. I hope and pray that at least the scans will show no new brain mets have developed since my last scans on August 29th.
I have posted here before that it just might be a coincidence that the brain mets arrived after I completed two 10 week infusion programs using Yervoy. To be brain met free for 11 years and then have this happen is very unsettling. I know that many of you have had success using Yervoy. But it just goes to show that there are no guarantees in life. I'm thankful for all the chemo therapies I have taken that have extended my life, for my oncologist and the drug companies that continue to invest in finding cures for melanoma. Continue the fight as I do. We have no choice.
Bruce in New Hampshire
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- November 5, 2011 at 12:31 pm
Linda, you pose an interesting question. I just entered my 12th year fighting melanoma, and I have always had clear brain MRI's until this July when my brain scans showed too many brain mets to count. I was absolutely floored. So I completed Whole Brain Radiation Treatment (WBRT) followed by a 42 day Temodar chemo program. My next brain MRI is this Monday the 7th. I hope and pray that at least the scans will show no new brain mets have developed since my last scans on August 29th.
I have posted here before that it just might be a coincidence that the brain mets arrived after I completed two 10 week infusion programs using Yervoy. To be brain met free for 11 years and then have this happen is very unsettling. I know that many of you have had success using Yervoy. But it just goes to show that there are no guarantees in life. I'm thankful for all the chemo therapies I have taken that have extended my life, for my oncologist and the drug companies that continue to invest in finding cures for melanoma. Continue the fight as I do. We have no choice.
Bruce in New Hampshire
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- November 5, 2011 at 12:31 pm
Linda, you pose an interesting question. I just entered my 12th year fighting melanoma, and I have always had clear brain MRI's until this July when my brain scans showed too many brain mets to count. I was absolutely floored. So I completed Whole Brain Radiation Treatment (WBRT) followed by a 42 day Temodar chemo program. My next brain MRI is this Monday the 7th. I hope and pray that at least the scans will show no new brain mets have developed since my last scans on August 29th.
I have posted here before that it just might be a coincidence that the brain mets arrived after I completed two 10 week infusion programs using Yervoy. To be brain met free for 11 years and then have this happen is very unsettling. I know that many of you have had success using Yervoy. But it just goes to show that there are no guarantees in life. I'm thankful for all the chemo therapies I have taken that have extended my life, for my oncologist and the drug companies that continue to invest in finding cures for melanoma. Continue the fight as I do. We have no choice.
Bruce in New Hampshire
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- October 11, 2011 at 12:10 pm
Hi Charlie,
BRAF Tested? Yes…negative. Not an option.
Yervoy Infusions? Yes, completed two 10 week rounds. All my brain mets came after I completed Yervoy. No success for me.
IL-2 Infusions? Yes, in 2009 I spent two weeks in the ICU at Dartmouth-Hitchcock Medical Center and took 20 bags. Had partial response for 3 months, then mets came back in left lung and esophagus. Later in 2009 went back for two more weeks of ICU using biochemo-therapy (IL-2 low dose, Interferon-Alpa 2B, cycplatin, verblastin, dacarbarzine). No impact on mets.
So…I am really counting on some success with Temodar. I know it's a long shot but I manitain a positive attitude every day I wake up and see the sun shining. Every day is a good day. I just entered my 12th year of fighting melanoma and I'm not about to give up now. I'll post again when I have new news. Meanwhile, my message to all of you fighting this disease is to fight hard and NEVER give up! Like Charlie says, research every option.
Bruce
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- October 11, 2011 at 12:10 pm
Hi Charlie,
BRAF Tested? Yes…negative. Not an option.
Yervoy Infusions? Yes, completed two 10 week rounds. All my brain mets came after I completed Yervoy. No success for me.
IL-2 Infusions? Yes, in 2009 I spent two weeks in the ICU at Dartmouth-Hitchcock Medical Center and took 20 bags. Had partial response for 3 months, then mets came back in left lung and esophagus. Later in 2009 went back for two more weeks of ICU using biochemo-therapy (IL-2 low dose, Interferon-Alpa 2B, cycplatin, verblastin, dacarbarzine). No impact on mets.
So…I am really counting on some success with Temodar. I know it's a long shot but I manitain a positive attitude every day I wake up and see the sun shining. Every day is a good day. I just entered my 12th year of fighting melanoma and I'm not about to give up now. I'll post again when I have new news. Meanwhile, my message to all of you fighting this disease is to fight hard and NEVER give up! Like Charlie says, research every option.
Bruce
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- October 11, 2011 at 12:10 pm
Hi Charlie,
BRAF Tested? Yes…negative. Not an option.
Yervoy Infusions? Yes, completed two 10 week rounds. All my brain mets came after I completed Yervoy. No success for me.
IL-2 Infusions? Yes, in 2009 I spent two weeks in the ICU at Dartmouth-Hitchcock Medical Center and took 20 bags. Had partial response for 3 months, then mets came back in left lung and esophagus. Later in 2009 went back for two more weeks of ICU using biochemo-therapy (IL-2 low dose, Interferon-Alpa 2B, cycplatin, verblastin, dacarbarzine). No impact on mets.
So…I am really counting on some success with Temodar. I know it's a long shot but I manitain a positive attitude every day I wake up and see the sun shining. Every day is a good day. I just entered my 12th year of fighting melanoma and I'm not about to give up now. I'll post again when I have new news. Meanwhile, my message to all of you fighting this disease is to fight hard and NEVER give up! Like Charlie says, research every option.
Bruce
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- October 7, 2011 at 11:49 am
Hi Charlie,
Thanks for your tutorial on the use of Temodar to fight melanoma in the brain. It was very helpful to read your summary information. To answer your questions, here is the background information. My best hope to stop the spread of melanoma in my body which now has progressed in the past 3 months to the chest, spleen, adrenal glands, stomach and pelvic regions is to get into the adoptive cell transfer approach using harvested t-cells that you mention. The last test I needed to pass for acceptance to NIH in Maryland was a clear brain MRI. In August my brain MRI showed more than 10 brain metastases which just blew me away, as I have had clear scans for over 10 years fighting this disease. So I underwent Whole Brain Radiation Treatment in August, followed by another brain MRI August 29th that showed most of the tumors still present. SRS is not an option, nor is surgery, when so many tumors exist in the brain. So my oncologist recommended that I begin the 42 day Temodar treatment program at a dosage of 140 mg. per day. I have completed 26 of the 42 day program now. My CT scan last week showed continued progression of the disease, which I believe can only be stopped through a systemic treatment offered at NIH. But to get there, I need 3 or less brain mets. Will the Temodar work for me? Statistics say the success rate is 5-10% – not encouraging. But I will continue to fight. If you have knowledge of other drugs I should consider taking in addition to Temodar, I would like to hear about them.
Thanks again, Charlie. Your knowledge on the subject first hand is invaluable.
Bruce
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- October 7, 2011 at 11:49 am
Hi Charlie,
Thanks for your tutorial on the use of Temodar to fight melanoma in the brain. It was very helpful to read your summary information. To answer your questions, here is the background information. My best hope to stop the spread of melanoma in my body which now has progressed in the past 3 months to the chest, spleen, adrenal glands, stomach and pelvic regions is to get into the adoptive cell transfer approach using harvested t-cells that you mention. The last test I needed to pass for acceptance to NIH in Maryland was a clear brain MRI. In August my brain MRI showed more than 10 brain metastases which just blew me away, as I have had clear scans for over 10 years fighting this disease. So I underwent Whole Brain Radiation Treatment in August, followed by another brain MRI August 29th that showed most of the tumors still present. SRS is not an option, nor is surgery, when so many tumors exist in the brain. So my oncologist recommended that I begin the 42 day Temodar treatment program at a dosage of 140 mg. per day. I have completed 26 of the 42 day program now. My CT scan last week showed continued progression of the disease, which I believe can only be stopped through a systemic treatment offered at NIH. But to get there, I need 3 or less brain mets. Will the Temodar work for me? Statistics say the success rate is 5-10% – not encouraging. But I will continue to fight. If you have knowledge of other drugs I should consider taking in addition to Temodar, I would like to hear about them.
Thanks again, Charlie. Your knowledge on the subject first hand is invaluable.
Bruce
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- October 7, 2011 at 11:49 am
Hi Charlie,
Thanks for your tutorial on the use of Temodar to fight melanoma in the brain. It was very helpful to read your summary information. To answer your questions, here is the background information. My best hope to stop the spread of melanoma in my body which now has progressed in the past 3 months to the chest, spleen, adrenal glands, stomach and pelvic regions is to get into the adoptive cell transfer approach using harvested t-cells that you mention. The last test I needed to pass for acceptance to NIH in Maryland was a clear brain MRI. In August my brain MRI showed more than 10 brain metastases which just blew me away, as I have had clear scans for over 10 years fighting this disease. So I underwent Whole Brain Radiation Treatment in August, followed by another brain MRI August 29th that showed most of the tumors still present. SRS is not an option, nor is surgery, when so many tumors exist in the brain. So my oncologist recommended that I begin the 42 day Temodar treatment program at a dosage of 140 mg. per day. I have completed 26 of the 42 day program now. My CT scan last week showed continued progression of the disease, which I believe can only be stopped through a systemic treatment offered at NIH. But to get there, I need 3 or less brain mets. Will the Temodar work for me? Statistics say the success rate is 5-10% – not encouraging. But I will continue to fight. If you have knowledge of other drugs I should consider taking in addition to Temodar, I would like to hear about them.
Thanks again, Charlie. Your knowledge on the subject first hand is invaluable.
Bruce
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