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May 26, 1999 update from Dennis McKenna
To all,
This is the second (or third, I forget) update on Terence's situation.
Most of you already know that he is in the Queen's Medical Center in Honolulu, having been diagnosed with brain cancer. If I missed including you in this "update list" please forgive the omission; the older version of AOL was giving me a lot of trouble trying to put together a list, and you may have been missed in my attempts to work around that (count on AOL *not* to work when you really need it). I've now installed a newer version which seems to me much better.
Also, feel free to forward this to anyone you feel would want to know that is not on this list but would like to be.
Here's the current situation; it is now Wednesday, 5/26, about 9 am here in Honolulu. Terence, who has been here since Saturday after being flown here from Kona after suffering several massive seizures, underwent the preliminary biopsy procedure yesterday to collect a sample of the tumor so they can determine what type it is and try to fill in the picture as to various treatment options.
They will get the tissues back later today, and then will know more about the cancer as such, what type it is, etc. But they already know enough from the CAT scans and other data to present a fairly grim picture. Here's the bare bones:
The tumor is lodged so deeply in the brain, and is located in such a place, that surgical removal is probably not an option. There is a significant chance he would not survive it, or survive it but remain in a coma with severely impaired functions, or (the most optimistic scenario) survive with impaired functions that could be recovered partially through rehabilitation.
The problem is that he would probably not survive long enough to complete rehabilitation.
So the current options are as follows:
Instead of surgery, the doctor (Dr. Keep) is suggesting the gamma knife, this is a focused gamma beam that will destroy the tumor. It is a noninvasive procedure that is a one-day procedure; so it is like surgery but using gamma particles instead of a knife.
That will kill the primary tumor (and he is now satisfied it is a primary brain tumor, not a metastatic tumor from some other part of the body). There is no sign of cancer elsewhere in Terences' body.
The tumor may then resorb, or it may swell, putting pressure on the brain which may necessitate surgery later on anyway. And that surgery will be much more dangerous because he will still be recovering from the gamma surgery.
The gamma procedure also should (in the doctor's view) be followed up by x-ray radiotherapy to destroy cancer cells in the surrounding tissue. This is a more diffuse, less focused procedure than the gamma knife, and requires treatement 5 days a week for about six weeks. That will buy more time, but the drawback is that Terenece would feel fine for a while, (although the usual effects of radiation therapy; hair loss, severe fatigue, immune compromise, etc.) but then in about a year would suffer what's called radiation dementia, involving severe memory loss, loss of cognitive functions, etc. This radiation dementia is not a maybe, it is a certainty.
The further bad news is that the doctor doesn't think he will survive long enough to experience radiation dementia.
None of these procedures is a cure. The doctor is very clear on this point. The procedures, and the various options, are to buy Terence some time, preserve quality of life as much as possible as long as possible, but right now, short of an outright miracle, survival beyond about two years maximum is extremely unlikely.
Here is the projected survival rates for various options:
- Do nothing, prevent seizures, keep the swelling down and keep him comfortable: death in 1 month to two months maximum
- Proceed with the gamma knife operation, kill the primary tumor, and do not follow up with X-ray therapy. Survival to about six months, during which time he will feel relatively good, and will not have dementia until the later, terminal stages
- Proceed with the recommended procedure, gamma knife + X-ray therapy. He may have up to nine pretty good months, then a rapid decline. Survival beyond a year is unlikely. Although survival up to two years is known, but rare. But usually the final stages are not good for the patient in terms of quality of life.
Another option may exist in that there may be experimental therapies, and experimental treatment protocols, that would offer an alternative solution. We are looking into this very vigorously as you can imagine. There is a lot of active work in this area, but the question of qualifying to be included in the treatment protocol, the time to get in, etc. will all have to be sorted out. At this stage, we have not yet identified what experimental therapies may be appropriate. The doctor has given us some excellent leads and we welcome additional leads from one and all; rest assured, we're on it and any thing we turn up that looks promising will be included in the next update.
Terence needs your hopes, prayers, and good vibes, as much as you can send, however you think appropriate, more than ever now. You can use my email address as a contact (djmckenna@aol.com) but please be understanding if I do not respond to each email individually. I have set up this email list to keep people informed, and if you want to be included on the list (or excluded if your name is on this one and should not be) just ask.
Also, unless you are a close personal friend of Terence's or a family member, please do not, repeat do not, call the Queen's medical center in Honolulu.
Thanks for your help, love, and support, and stay tuned.
Dennis
