Saturday, May 7, 2011

Not for the faint of heart

Next Tuesday we have our first visit with the neurology radiologist about the overall brain radiation plan. We know two things at this point - that she has remnants of the removed tumor which need to be addressed, plus another tumor in a different location. The technologies to address brain tumors have evolved remarkably over the last decade and using a technique of focused beam radiation, the neurology team (radiologist, physicist, neurosurgeon) uses a plan based on tumor(s) location which is able to radiate (and hopefully eliminate) identified tumors. There is usually an initial visit to discuss the scenario and plan and what is achievable (that is our Tuesday visit) followed by additional brain scans to get the latest tumor information, followed by the actual treatment (which involves realtime CT scans and MRIs and a sophisticated computer driven robotic arm delivering precise amounts of radiation in a broad field pattern to identified points using a pattern which causes very little impact to healthy brain matter but ends up concentrating on the identified area). Because this technique does impact the tumors and brain margin around them, there is swelling (this is bad), which they control through steroids. If you are on steroids though, you cannot proceed to a systemic treatment like Interleukin-2, because the steroids counteract the Interleukin-2. So you have to address the brain first, then once it is under control, move on to the systemic treatment.

Only read on if you want to read about outcomes, probabilities, and prognoses. Seriously. Now is the time to "close tab".

Meagan has made it explicitly clear that she does not want to discuss prognosis, but wants to live in the now and enjoy each and every day. Her brain "insult" from the stroke has left her in a great state of mind (likely caused by some damage to that part of her brain controlling emotion and left brain thinking - not uncommon in stroke victims). I on the other hand, had to do some research, because I know we are going to be presented by the radiologist with treatment scenarios and outcomes, including  side effects. Besides the focused radiation, there is also the possibility of whole brain radiation. So I need to be able to help Meagan understand and make treatment choices, which we will discuss with Dr. Kaplan, as our trusted oncologist and ally on the 24th.

The problem with melanoma (even over any other malignant cancer) is that once it reaches the brain it is very difficult to control. And while you are trying to control it at the brain, it continues to attack and grow in other body organs. Melanoma tends to be radiation resistant, so brain tumor recurrence is common even at the site treated. Moreover, if you have, say, two obvious identified tumors such as Meagan has (one of which was removed as much as the surgeon was able, although microscopic bits remained which can regrow) which at the time of her brain MRI a month ago were about the size of a pencil eraser, that does not mean those are the only sites of malignant brain tumors. There usually are more, they are just smaller and at an earlier stage and not detectable yet. But they will grow, and impact the area of the brain they are growing in. So sometimes whole brain radiation is recommended. It's use has declined because of side effects, but it is still used. The harsh reality is that when malignant cancer reaches the brain, it's usually about control, not cure. The technical term is palliative treatment - doing as much as you can for as long as you can while maintaining quality of life. So it becomes a bit like that game "wack a mole". So you might end up doing multiple rounds of focused beam radiation treatments as brain tumors emerge or recur. But every time you zap a spot with radiation, because they are trying to get as much of the tumor as possible they usually try to get a bit of a margin. A bit of a margin in the brain can mean loss of function. And in the meantime melanoma is going about its business elsewhere.

If you are really super lucky, you might get all the identifiable brain tumors, and after the brain swelling has gone down, and you are off the steroids, and a rescan shows no identifiable brain tumors, you can have a shot at the systemic treatment (the only one of which left for her is Interleukin-2) to try to arrest the disease in the rest of the body and what you can't see yet in the brain. That has a 5% success rate, and about a 9% chance of some tumor reduction. If it doesn't work, and you can stay clear of brain tumors for another three months - then you have a chance to go to the National Cancer Institute and try to get on a clinical trial for another try. Long odds.

So the ultimate question for brain tumors is about balancing treatment (which typically is about control, not cure) with quality of life. And how long you can prolong that life.

This is just a really horrible place to be. I am not at all looking forward to the Tuesday neurology/radiologist visit. Because Meagan will be given this information. So it will be a high emotion day. And likely build for her an understanding of how the disease could progress and what that means.  I just hope the radiologist/neurology doctor is empathetic and kind.

The boys know about all this. Our goal is to support Meagan in whatever choices she makes and to keep her in as positive a frame of mind as she wants, and help her keep her focus where she wants it to be.

This is such an awful disease and it's tragic beyond words that there are no effective treatment options like there are for other cancers.

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