They did find two new small brain tumors on the last scan. She is scheduled to have them zapped with the Gamma knife radiation on the 29th. The good news is the last two tumors which got zapped about 5 weeks ago are responding to the radiation, the smaller one has disappeared and the larger one has reduced in volume by 41%. So our doc says that is a pretty good sign her melanoma is radiation sensitive, for now. And thus the odds of successful treatment on the 29th are good. So it's pretty much as predicted - scan and zap.
It's somewhat of a relief ironically, rather than bad news. It could have been there were so many new tumors that there would be really no effective treatment. Or that the previously treated tumors didn't respond. So what her tumors are acting like...is acne - a zit emerges and you pop it. A tumor emerges and you zap it. It could be our life for quite a while, especially since no cure is on the horizon. So our favorite friends are now our radiation oncologists - Vermeulen for the brain and Landis for the spine and body.
Showing posts with label scan anxiety. Show all posts
Showing posts with label scan anxiety. Show all posts
Monday, September 19, 2011
Wednesday, August 3, 2011
Drum roll...
We meet with Dr.Kaplan at 11:20. Which means it could be noon. We arrive about a 1/2 hour early so that Meagan can have her blood drawn, and this time around she has to have it accessed via her port and have that flushed - it needs to be flushed out every 6 weeks if not used for treatment.
Our game plan is to review the questions we have for him this morning. That will be hard. But we need to talk about the MRI results (and resulting plan), any systemic, whole body treatment which might be possible beyond what she is already on (the Temodar), and tumor identification and management (does she have a CT scan of the body or wait until symptoms present themselves and then we address them?). I do know that some tumors can be dealt with via radiation (Cyberknife), others by surgery. Meagan wants to get tumors out as soon as they can be identified, especially if they have the potential to be life threatening. Of course, at some point they won't be able to be removed or zapped, but here's hoping that is down the road and we buy time.
I'm bringing handkerchiefs. Our plan afterward is to take a walk around Greenlake and then have lunch. Being out and around people helps. First though, we will talk to the boys.
At some point we'll come home and I'll post what the story is...
Our game plan is to review the questions we have for him this morning. That will be hard. But we need to talk about the MRI results (and resulting plan), any systemic, whole body treatment which might be possible beyond what she is already on (the Temodar), and tumor identification and management (does she have a CT scan of the body or wait until symptoms present themselves and then we address them?). I do know that some tumors can be dealt with via radiation (Cyberknife), others by surgery. Meagan wants to get tumors out as soon as they can be identified, especially if they have the potential to be life threatening. Of course, at some point they won't be able to be removed or zapped, but here's hoping that is down the road and we buy time.
I'm bringing handkerchiefs. Our plan afterward is to take a walk around Greenlake and then have lunch. Being out and around people helps. First though, we will talk to the boys.
At some point we'll come home and I'll post what the story is...
Friday, July 29, 2011
Scanxiety
It's starting. We are at T-3 days for the brain MRI and T-5 days for the results discussion with Kaplan and what to do next (some of which is dependent on if there is brain tumor activity and some of which is independent). It's pretty difficult to explain to Meagan the "what-ifs" because she has a hard time following it and because it gets scary and goes down the dark road she'd rather not visit. So it's a delicate balance to respond to her questions with enough information to be useful but not tip her over the emotional edge.
For example, yesterday she asked, "if they find a brain tumor they will just zap it, right?". Well, the answer is not quite that simple:
1. If there are 1-3 isolated and contained tumors - that's probably correct - they can use the Cyberknife radiation treatment.
2. But it depends on location - if it's locally recurrent (i.e., where the tumors were initially) - and they've come back even though that area was previously irradiated, it means they are probably radiation resistant (something melanoma is notorious for) and it may not do any good and may cause more brain function loss to do the treatment.
3. If they are in different locations, it still may be possible, but if they are in critical brain function areas, the resulting radiation treatment impact (as they go after margin, not just the tumor) could be highly detrimental to brain function. Which impacts remaining quality of life.
4. If there are more than 3-4 tumors, they probably wouldn't do Cyberknife. Then the only alternative is whole brain radiation. That has not proven very effective, and there is no clear advantage to doing that to gain life extension over just using steroids (because if this is the case, it's all about managing quality of life) and it can cause a lot of negative side effects (like dementia).
5. Even if the scans are clean it doesn't really mean anything in terms of the disease outcome in the brain other than we've gained a few months (which is still quite valuable!!). It is still there, it never gets wiped out completely, it's just laying low. Melanoma has a propensity to be capricious and sudden; you can be clean as a whistle one month and then one month later have ten tumors.
So we are walking a fine line, again. She wants to know a little, but not go too far. Kaplan will have to be the one that lays out some of this based on the results. And she may not want to play the "what-if" game - but just deal with the situation as it becomes concrete. So if over the next 3-5 days she asks more questions, I will probably just defer, and find ways to comfort her over the scanxiety without addressing the potential outcomes.
For example, yesterday she asked, "if they find a brain tumor they will just zap it, right?". Well, the answer is not quite that simple:
1. If there are 1-3 isolated and contained tumors - that's probably correct - they can use the Cyberknife radiation treatment.
2. But it depends on location - if it's locally recurrent (i.e., where the tumors were initially) - and they've come back even though that area was previously irradiated, it means they are probably radiation resistant (something melanoma is notorious for) and it may not do any good and may cause more brain function loss to do the treatment.
3. If they are in different locations, it still may be possible, but if they are in critical brain function areas, the resulting radiation treatment impact (as they go after margin, not just the tumor) could be highly detrimental to brain function. Which impacts remaining quality of life.
4. If there are more than 3-4 tumors, they probably wouldn't do Cyberknife. Then the only alternative is whole brain radiation. That has not proven very effective, and there is no clear advantage to doing that to gain life extension over just using steroids (because if this is the case, it's all about managing quality of life) and it can cause a lot of negative side effects (like dementia).
5. Even if the scans are clean it doesn't really mean anything in terms of the disease outcome in the brain other than we've gained a few months (which is still quite valuable!!). It is still there, it never gets wiped out completely, it's just laying low. Melanoma has a propensity to be capricious and sudden; you can be clean as a whistle one month and then one month later have ten tumors.
So we are walking a fine line, again. She wants to know a little, but not go too far. Kaplan will have to be the one that lays out some of this based on the results. And she may not want to play the "what-if" game - but just deal with the situation as it becomes concrete. So if over the next 3-5 days she asks more questions, I will probably just defer, and find ways to comfort her over the scanxiety without addressing the potential outcomes.
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