› Forums › General Melanoma Community › Advice on Brain Surgery/WBR/Gamma
- This topic has 8 replies, 4 voices, and was last updated 13 years, 4 months ago by
nickmac56.
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- August 15, 2011 at 8:22 pm
Well, we got good news and bad news from all of Dirk's scans last week at MD Anderson. Good news: CT shows a tiny bit of shrinkage in some lung mets, tiny growth in liver…altogether…they are calling it stable. Bad News: 4 new mets in the brain. One is large 9x10mm, 3 small
Well, we got good news and bad news from all of Dirk's scans last week at MD Anderson. Good news: CT shows a tiny bit of shrinkage in some lung mets, tiny growth in liver…altogether…they are calling it stable. Bad News: 4 new mets in the brain. One is large 9x10mm, 3 small
Papa wants Dirk to have surgery to remove the large one and he can harvest it for possible T-cells in a clinical trial. T-cell growth is a 60% possibility in previously untreated patients. It will take 30 to 45 days to grow cells. Dirk also has surface spots to harvest from on his body. We were told that those t-cells don't work as well on the brain mets. However, because Dirk already participated in BRAF, IPI and E-7080, doctor doesn't know how that will affect possible T-cell growth overall.
After our discussion with the neurosurgeon today, we are uncertain what to do. We do not necessarily have to have surgery for his brain mets, unless we want T-cells harvested. Is the possibility worth the risk? Any advice on Surgery vs WBR vs Gamma would be appreciated.
Our choices for brain mets are:
1. Surgically remove the large tumor in the brain for T-cell trial (along with one from his side) and (a) use Gamma Knife on other 3 or (b) watch the other 3 while waiting for T-cells to grow. In a few weeks after recovery, use Bio-Chemo or Temodar until or if t-cells are ready.
2. WBR …… only harvest T-cells from his body mets…..Use Bio-Chemo or Temodar until or if T-cells are ready.
3. Gamma Knife on all 4 tumors….only harvest T-cells from his body mets…..Use Bio-Chemo or Temodar until or if T-cells are ready.
Any input would be appreciated.
Jan
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- August 15, 2011 at 9:20 pm
Hi Jan,
I am so sorry to hear about the brain mets.
You have a tuff decision to make and I have no experience with brain mets.
However, I guess you are saying that you are going with a t-cell clinical trial. I am interested in getting more education on T-cell clinical trials.
I would appreciate knowing the NCT clinical trial number if you could post it.
God bless you both…praying for good things for you both.
Dan
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- August 15, 2011 at 9:20 pm
Hi Jan,
I am so sorry to hear about the brain mets.
You have a tuff decision to make and I have no experience with brain mets.
However, I guess you are saying that you are going with a t-cell clinical trial. I am interested in getting more education on T-cell clinical trials.
I would appreciate knowing the NCT clinical trial number if you could post it.
God bless you both…praying for good things for you both.
Dan
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- August 15, 2011 at 10:09 pm
If it was me, I'd have the craniotomy for the big met and then gamma/cyber on the margins as well as on the other three. Or maybe WBR instead of gamma/cyberknife. You and Dirk have to make your own decision, obviously…
Brain surgery is not nearly as hard as it sounds. I am younger than Dirk and a little bit nuts, I grant you, but I went running the day after I got my stitches out (two weeks after surgery.) Of course there is risk – there is with any surgery – but seriously, it was easier and less painful than most of my other surgeries. So, don't let the "squick" factor of brain surgery stop you from considering your full range of options.
Best wishes as you plot your next move,
KatyWI
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- August 15, 2011 at 10:09 pm
If it was me, I'd have the craniotomy for the big met and then gamma/cyber on the margins as well as on the other three. Or maybe WBR instead of gamma/cyberknife. You and Dirk have to make your own decision, obviously…
Brain surgery is not nearly as hard as it sounds. I am younger than Dirk and a little bit nuts, I grant you, but I went running the day after I got my stitches out (two weeks after surgery.) Of course there is risk – there is with any surgery – but seriously, it was easier and less painful than most of my other surgeries. So, don't let the "squick" factor of brain surgery stop you from considering your full range of options.
Best wishes as you plot your next move,
KatyWI
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- August 15, 2011 at 11:19 pm
You two have been through so much and are such fighters. Alot of brain surgery depends on where tumor is located. If they can give you a fairly good prognosis on the surgery with minimal expected damage AND if you will be accepted into the trial for T-cells it sounds like a winner. However, I would sure like them to be able to do something to keep the growth of the remaining tumors at a minimum while the cells are growing. The least toxic treatment would be my preference so the body is strong to receive the new cells.
Good luck this is a tough choice.
Mary
Stage 3
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- August 15, 2011 at 11:19 pm
You two have been through so much and are such fighters. Alot of brain surgery depends on where tumor is located. If they can give you a fairly good prognosis on the surgery with minimal expected damage AND if you will be accepted into the trial for T-cells it sounds like a winner. However, I would sure like them to be able to do something to keep the growth of the remaining tumors at a minimum while the cells are growing. The least toxic treatment would be my preference so the body is strong to receive the new cells.
Good luck this is a tough choice.
Mary
Stage 3
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- August 15, 2011 at 11:58 pm
I sympathize with your incredibly difficult choice. My wife has had a craniotomy, cyberknife, gamma knife. I've studied everything I can get my hands on about brain tumors. I believe T-cell therapy is the way forward and I'm deeply saddened that my wife cannot do this due to her condition. But if I were in your shoes I would put your trust in your hired professional – Dr. Papa. There is no way a novice can figure out what the best thing to do is. There are too many variables, too many aspects unique to the individual, and no way of objectively determining which approach is "best" on your own, or even with the chorus piping in. I think the real work was in deciding to go to Houston and deciding to go with Papa. At this point – I think you have to go with his best professional judgment.
Nick
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- August 15, 2011 at 11:58 pm
I sympathize with your incredibly difficult choice. My wife has had a craniotomy, cyberknife, gamma knife. I've studied everything I can get my hands on about brain tumors. I believe T-cell therapy is the way forward and I'm deeply saddened that my wife cannot do this due to her condition. But if I were in your shoes I would put your trust in your hired professional – Dr. Papa. There is no way a novice can figure out what the best thing to do is. There are too many variables, too many aspects unique to the individual, and no way of objectively determining which approach is "best" on your own, or even with the chorus piping in. I think the real work was in deciding to go to Houston and deciding to go with Papa. At this point – I think you have to go with his best professional judgment.
Nick
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