It's been a very long and emotionally draining past two days.
Because we've gotten so much conflicting information, we decided to go to one more place to in the hopes that it would help us to better make our decision for Matt's treatment plan going forward. We were actually able to get in to meet with a doctor at MD Anderson in Texas Tuesday morning, so we flew in late Monday night and got a flight back for the next day.
The reason we wanted to go to MD Anderson was because we know it's one of the best in the country for brain tumors, and since we were getting so much conflicting advice, we were hoping to get some clear cut answers and some confirmation that would be in line with what other doctors have told us. The main thing we were hoping to get was some clarification on whether or not to do radiation, since that is what the doctors don't seem to be in agreement with right now.
We first met with the neuro-oncologist in the morning, and his suggestion was to go with radiation and oral chemo(Temodar). But he told us that we would need to meet with the radiation oncologist to talk about what would be the best plan for radiation and whether we would want to go with the proton or photon radiation.
We ended up having to get a later flight back to Louisville, but we were able to get in to talk with the radiation oncologist that day. That was good, but what she said was not really in line with the first doctor. While he recommended radiation, she felt that the risk was too high to do radiation safely because he has had radiation in the past. She did say that she would really need to see a more recent MRI to come to a full conclusion, so there again , we weren't really given a clear cut answer. Sooo....at that point it felt like we were back at square one. One doctor had told us radiation, and the other said it may not be the best possibility...so who do we listen to???
We were a little frustrated leaving MD Anderson, as well as just tired from lack of sleep and travel. But now that I've had the time to think through everything, I think it actually did give us some confirmation on things. Once again, we were told that Temodar would be the way to go with the chemo, rather than starting with Avastin as one doctor had suggested. As far as radiation goes, it seems that proton radiation is out, as now two doctors have said they don't think it would be safe to do in Matt's situation. Even though some doctors have said to do radiation, it seems that we keep getting resistance...so I see that as confirmation that maybe radiation is not the way to go at this time.
So now...it's decision time. No more questioning things, no more talking to more doctors. Now we just gotta DO something. I'm tired of waiting and waiting to get more answers. The thing is, there really is no right or wrong way to go. Different things work for different people, and there really is not a standard treatment-every doctor has a different opinion on it and nothing is clear cut. So ultimately, you just have to make the most informed decision that you can, and then leave it God's hands. He can use anything we choose. It's His will that will be done. We just have to continue to trust.
I'll update you all further when Matt gets started on treatment.
Because we've gotten so much conflicting information, we decided to go to one more place to in the hopes that it would help us to better make our decision for Matt's treatment plan going forward. We were actually able to get in to meet with a doctor at MD Anderson in Texas Tuesday morning, so we flew in late Monday night and got a flight back for the next day.
We first met with the neuro-oncologist in the morning, and his suggestion was to go with radiation and oral chemo(Temodar). But he told us that we would need to meet with the radiation oncologist to talk about what would be the best plan for radiation and whether we would want to go with the proton or photon radiation.
We ended up having to get a later flight back to Louisville, but we were able to get in to talk with the radiation oncologist that day. That was good, but what she said was not really in line with the first doctor. While he recommended radiation, she felt that the risk was too high to do radiation safely because he has had radiation in the past. She did say that she would really need to see a more recent MRI to come to a full conclusion, so there again , we weren't really given a clear cut answer. Sooo....at that point it felt like we were back at square one. One doctor had told us radiation, and the other said it may not be the best possibility...so who do we listen to???
We were a little frustrated leaving MD Anderson, as well as just tired from lack of sleep and travel. But now that I've had the time to think through everything, I think it actually did give us some confirmation on things. Once again, we were told that Temodar would be the way to go with the chemo, rather than starting with Avastin as one doctor had suggested. As far as radiation goes, it seems that proton radiation is out, as now two doctors have said they don't think it would be safe to do in Matt's situation. Even though some doctors have said to do radiation, it seems that we keep getting resistance...so I see that as confirmation that maybe radiation is not the way to go at this time.
So now...it's decision time. No more questioning things, no more talking to more doctors. Now we just gotta DO something. I'm tired of waiting and waiting to get more answers. The thing is, there really is no right or wrong way to go. Different things work for different people, and there really is not a standard treatment-every doctor has a different opinion on it and nothing is clear cut. So ultimately, you just have to make the most informed decision that you can, and then leave it God's hands. He can use anything we choose. It's His will that will be done. We just have to continue to trust.
I'll update you all further when Matt gets started on treatment.
They used Temodar on my father in law, I want to say a month out from his surgery and radiation because he'd never had radiation before.
ReplyDeleteHave they discussed the Optune device trial with you? I know that has low radiation output. They suggested it for my father in law after his initial radiation.
The Avastin was the last chemo he was given. In our case the tumor was too aggressive for the chemo to work.
Best wishes during this journey for you both. Keep asking your questions to come to the most educated decision you can, leave no question unanswered.
Yes, he probably will be doing the Optune soon as well as the chemo. Avastin has been mentioned to us as a possible chemo option in the future if needed. Thank you so much.
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