Time line for ginko blastoma brain tumor?

Answer 1

The question I am asked most often is "How long?" While the end stage path varies from person to person, there do tend to be commonalities that

can help us to "see what we're seeing," and often, to estimate how much time might remain.

First of all, how do you know "it's really time"? There are a few points that tend to help families realize that the disease is truly progressing and that

preparations are in order. This discussion can be found on the page entitled The Hospice Decision.

Many of us are late to call in hospice---there's no shame in that---and we don't realize until later, with 20-20 vision, that the help probably could

have been used earlier. It seems that most brain tumor patients tend to average 1 month or so under hospice care, though the disease may have

been progressing well before that time. Our community, then, offers hospice workers little exposure to and experience with this disease, so it's

important to know that unless your specific hospice nurse has worked with end-stage brain tumor patients before, his or her answer to the "How

long?" question almost always tends to be a longer-than-actual prognosis.

Why? Death to other forms of cancer tends to be much different. There is likely to be a longer period of weakening and decline, and more of a

heads-up from the vital signs. With other cancers, there tends to be an organ-by-organ alert that the body is losing the battle. In contrast, some

brain tumor patients---especially those in their 20s and 30s---might still be conversing or even walking themselves into the bathroom just a couple

of days before their passing. Nurses whose experience has been largely earned with other cancer care aren't always aware of one critical point: the

brain, as a master circuit breaker, has the capacity to shut down the body in one motion, without taking it organ by organ.

So...how long? This list is a very, very loose guideline based on what has happened to other people, but it may be helpful in beginning important

discussions with the patient's doctor and family. In order to serve as a helpful guide, most of what's listed under each time heading would need

to be occurring. Remember, though, that everyone is different. Too, patients in their 20s and 30s as well as those whose brain tumor journeys

have already been quite long tend to spend longer in each of these stages.

3-6 Weeks Prior to Death

Motor

Increasing weakness on the affected side

Falling due to resistance to accept help

Need for more assistance with walking, transfers

Urinary/Bowel

Urinary/bowel incontinence may begin

Cognitive/Personality/Speech

Confusion and memory loss

Harder to sustain a conversation

May say some odd things that make you think "Where did that come from?"

May ask less about the next treatments or appointments

May ask clear, rational questions about death, arrangements, etc.

Physical

Increasingly tired, more easily "wiped out" after simple activities or outings

Headaches may indicate increased swelling

More likely to nap or to phase in and out of sleep

2-3 Weeks Prior to Death

Motor

May begin to see weakness starting on the non-affected side

Affected hand may curl in or be kept close to the center of the body

Legs begin to buckle, eventually leading to dead weight when attempting to stand

If still walking, may wander around the house a little, as if restless

May find it difficult to hold the head up straight or may slump over

Urinary/Bowel

Urine becomes dark (often described as "tea-colored")

Less warning before urination (more urgency)

Cognitive/Personality/Speech

Less interest in matters of the home and family, hobbies, or world at large

Detached, without curiosity

Harder to have an effective adult-peer conversation

General restlessness/agitation

Word-finding difficulties (conversation may be very slow)

Confusion over what time of day it is (sundowner's syndrome)

Speech may be slurring or trailing off, unfinished

May begin saying things that sound like awareness that time is growing short

May begin to seem more "childlike"

Confused by choices; yes/no questions seem to work best

Physical

Losing interest in transferring or leaving the house

Seems to feel safest on one particular piece of furniture

Begins to have problems swallowing, if not already

Appetite may become sporadic

May be sleeping 20+ hours a day, with short alert times between sleep

May doze back off after eating

May describe vision changes such as double vision, loss of peripheral vision, or black spots

No longer interested in activities that require close vision, such as reading

1-2 Weeks Prior to Death

Motor

Often, completely bedridden

Younger patients may still be stubborn about getting up, though requiring assistance

May hold on to the bedrail or to a caregiver's hand, hair, or clothing very tightly

Urinary/Bowel

Usually incontinent by now

May continue to express urinary urgency, without producing anything

Cognitive/Personality/Speech

May find loud or multiple sounds irritating

After waking, seems confused for several minutes

Staring across the room, up toward the ceiling, or "through" you

May look at TV but seem not to be watching it

May make mention of "getting ready" or "having to go," without knowing where

May refer to travel, packing, or gathering clothes

May talk about tying up loose ends (specific to the individual)

May mention seeing visions in the room (I've heard everything from horses to angels to deceased mothers-in-law)

Communication seems to take more effort and makes the patient winded or tired

Doesn't initiate conversation as much, though still giving brief responses to questions

Agitation may build

Likes to keep the primary caregiver in sight and may panic when he or she is not in the room

May seem especially irritable with large groups of visitors or young children (probably because understanding conversations requires more work)

Physical

Sleeping "almost all the time"

Can sleep even in a room full of activity and noise

Harder to rouse from sleep

Brief, scattered periods of alertness

Increased difficulty swallowing pills or liquids

Vision deficits increase

Eyes may look glassy, milky, cloudy, like "elderly eyes" or "fish eyes"

May reach toward the head during sleep (may indicate headache pain)

May have a distended abdomen

Vital signs are likely to still be good

May begin to have need for pain management

5-7 Days Prior to Death

Motor

May restlessly move the legs, as though uncomfortable

Most patients would no longer be leaving the bed by this stage

May reach up or out with the arms

May pick at the bed linens as if covered with small objects

Urinary/Bowel

As liquid intake decreases, output also decreases

The bowel becomes quite sluggish and there may be few/no bowel movements

Cognitive/Personality/Speech

Minimally responding to caregiver's questions

May begin sentences but not be able to finish them

May say things that are impossible to make out or things that don't make sense

May chant something ("Ohboyohboyohboy..." or "Ohmyohmyohmy...")

May continue to seem restless and fidgety, as if late for something

May be irritated by strong sounds or odors

Physical

May be taking only minimal amounts of food (a spoonful or two, here and there); some, however, continue to eat well until about 48 hours

before death

Decreasing intake of fluids

Administration of meds becomes harder or impossible

Dosing of meds becoming sporadic due to sleep schedule

May find it hard to clear the throat as mucus increases

The voice may lower and deepen

May have a wet cough

Vital signs often still good

Nearly always sleeping or resting

May be uncomfortable being moved during clothing or linen changes

Dramatic withering of the legs due to inactivity (skin 'n' bones)

May have a low-grade fever

2-5 Days Prior to Death

Motor

Motor movements (eg, waving or hugging) are likely to appear weak

Unable to help the caregiver by leaning or moving during linen changes

Urinary/Bowel

Bowel activity likely will have stopped

Urine output will lessen considerably

Urine color usually lightens

Cognitive/Personality/Speech

Very little interaction, often no initiation

Speech may be quite slurred and hard to understand

May sit in the room with others and say nothing for hours

Could be described as "neither here nor there"

Restlessness and agitation give way to calm

Physical

Hands and feet may become cool

Forehead and cheeks may be warm or hot

Thighs and abdomen may be warm or hot

Hard to keep the eyelids open, even when awake

May spend a couple of days with the eyes closed, even though still slightly responsive

Minimal interest in food

May turn or clench lips to indicate refusal of food or pills

May seem unaware of how to use a straw

May have had last decent fluid intake

May bring mucus up into the mouth with a productive cough

Last Decadron dose may be administered (either intentionally or due to difficulty of administration)

Some drugs may be given only by suppository or dropper now

Vital signs often still normal, but some report cardiac changes (eg, racing heart)

Final 8-48 Hours

Very difficult to rouse from sleep or elicit a response from

May have no response or only nonverbal communication (eg, winks, waves, or nods)

May seem relaxed and comfortable

Usually very minimal or no urine output

Reaches a point of unresponsive sleep (coma), which can last from 1 hour to most of the day

No longer any involuntary movement during sleep (no fidgets or eye movements)

Mouth may slacken and eyes may remain partially open during sleep, as voluntary muscle control is lost

Vital signs may be OK until just hours before death

Blood pressure may drop significantly

Heart rate may be twice-normal (120-180 beats per minute)

Just Hours

No response whatsoever from the patient

No movement

Breathing changes (of any kind at all)---sometimes faster, sometimes slower; sometimes harder, sometimes more faint; sometimes louder

sometimes inaudible

Mucousy breathing (the "death rattle"; harmless echo of air over mucus)

Time of Death

May let out a sigh

Respiration may slow so much that caregivers believe the last breath was taken, but a few more reflex breaths may follow

May open the eyes as they pass on

Will appear very relaxed

Shortly Afterward

Many have commented that the face looks younger, the forehead looks free from wrinkles and cares, and the steroid bloating begins to disappear.