Re: Would you quit taking an important drug to get rid of pain?

[Guest guest]

I don't know how old you are, your marital status, whether you work or not or

have young children. For me a person in my 60s it would be a no brainer to stop

the medication but I don't have any young children don't work etc, it would be a

harder decision if I had young children and couldn't work because of the pain

but could when the drug was eliminated.if someone was dependent on me

financially I would have to forgo the drug too. I can tell my priorities. But

not give a definite yes or no.

a

> Drastura wrote:

> What would you do? Would you trade a huge chunk of your pain for the

> small risk of a cancer returning? With the drug I have a 5-7% chance of it

coming back. Without it, a 10-14% chance.

[Guest guest]

 No mam i wouldn't. i do the same day in n out.and the only pain med that helps

they wont give it to me.so i give a thumbbs up on keeping from pain

Libby

> wrote:

>Would you quit taking a potentially life-saving drug to get rid of pain?

>I will have to make a decision soon, and I wondered what you guys would do.

>What would you do? Would you trade a huge chunk of your pain for the

small risk of a cancer returning? With the drug I have a 5-7% chance of it

coming back. Without it, a 10-14% chance.

[Guest guest]

ABSOLUTELY!!! (and I have cancer).

I would trade the guarantee of no cancer with getting rid of a significant

amount of pain and instead take the certainty of recurrence.

Guarantee no cancer + significant pain is significantly worse than little

pain and a guaranteed recurrence.

However, I am far more interested in quality of life than quantity.

Only you and your doctor can make this decision.

Is there a different medication that would keep you on remission without

significant pain?

Steve M in PA, age 22

> wrote:

>Would you quit taking a potentially life-saving drug to get rid of pain?

>What would you do? Would you trade a huge chunk of your pain for the

small risk of a cancer returning? With the drug I have a 5-7% chance of it

coming back. Without it, a 10-14% chance.

[Guest guest]

Steve, I have tried all the drugs and they all have those side

effects. As I sit here feeling like my leg(s) are in a fire pit, the

rest of me feels so much better and my head is so much clearer. My

oncologist said the drug would make my pre-existing pain worse too, and

I think that is right. It does seem less painful, but then I just took

my pain pill. duh

I have until mid-February to decide. We will be going to NYC for the

Westminster Show, which will be a lot of walking. I think that will be a

good time to make my decision.

Steve, what kind of cancer do you have? You seem way to young. But then,

I was 14 when I had bone cancer. Cancer doesn't give anyone a break,

does it?

>Steve wrote:

> ABSOLUTELY!!! (and I have cancer).

>

> I would trade the guarantee of no cancer with getting rid of a significant

amount of pain and instead take the certainty of recurrence.

>

> Guarantee no cancer + significant pain is significantly worse than little

> pain and a guaranteed recurrence.

>

> However, I am far more interested in quality of life than quantity.

>

> Only you and your doctor can make this decision.

>

> Is there a different medication that would keep you on remission without

significant pain?

[Guest guest]

Thanks a, I am 62, married, have 10 dogs, and I'm a freelance

writer. I do have the luxury of plopping down on the couch if the pain

gets too bad, unless I am behind on a deadline. But that is better than

being at workplace. I have until mid-February to decide for sure. By

then the drug should be totally out of my system, and maybe my hair will

stop falling out!!

>a wrote:

> I don't know how old you are, your marital status, whether you work or

> not or have young children. For me a person in my 60s it would be a no

> brainer to stop the medication but I don't have any young children

> don't work etc, it would be a harder decision if I had young children

> and couldn't work because of the pain but could when the drug was

> eliminated.if someone was dependent on me financially I would have to

> forgo the drug too. I can tell my priorities. But not give a definite yes or

no.

[Guest guest]

> Drastura wrote:

>

>

>What would you do? Would you trade a huge chunk of your pain for the

small risk of a cancer returning? With the drug I have a 5-7% chance of it

coming back. Without it, a 10-14% chance.

,

Realize that hormones feed cancer cells and as you get older your rates usually

are higher overcoming pain. The Cancer Centers of American have cancer

consultants you can talk to online and they have statistics and research to back

up what they say.

I happened to contact them and asked some treatment options now since I have not

practiced radiation therapy for years. Realize that stopping pain keeps the

pain reactors from destroying cells then organs. When you are in pain without

relief your body stays in the position of alert trying to fight the pain or what

is causing it, thus the blood pressure goes up and stays at high levels along

with other body functions and can damage organs.

http://www.medicinenet.com/high_blood_pressure/page8.htm

The best guide I read and was given to me by previous doctor is written by Dr.

Forest Tenant and explains pain really well and how to attack it. I appreciate

my previous pain doctor always giving me somethiing to read and this was the

most important think I read to understand it.

I did not want to write a book bit know that some people do not want to follow a

link so I cut and pasted some really important things Dr. Tenant addresses that

I bet many of your Doctors have not and I didn't either until I saw his

colleague in Houston.

Your attitude about pain must change. Increased pain hurts you. When the pain

flares, your pulse rate increases, and hormones stored in your adrenal gland

flood your system causing further body deterioration- tion, rusting, and aging.

Therefore, you MUST do whatever it takes to suppress your pain and prevent

flare-ups. You simply want to keep pain as far away and as controlled as

possible. Never try to " work through it " or " tough it out " or believe that

character and will power will solve your problem.

DEVELOP A SURVIVOR MENTALITY

Now that you have accepted your condition and you begin to consider pain your

enemy, you must de- velop a positive attitude of hope and survivorship. Why? We

no longer consider IP entirely hopeless and incurable. Recent medical research

advancement is fast and furious. While I make no guarantees, I now see many IP

patients who used to have severe, pain 24 - 7, but now have some pain free hours

or even days. There are new terms you have to learn along with the word

" intractable.†First, you must know about the " cardiac-adrenal-pain syndrome. "

This is essentially the biologic difference between ordinary chronic pain and

IP. The life-shortening, debilitating mechanism by which IP destroys a life is

the over- stimulation of the cardiac and adrenal hormone systems in the body. A

term of hope is " neurogenesis. " This means that nerves can regenerate or regrow.

At one point, we did not believe this was possible, but now we know differently.

This is the key to the cure or permanent reduction of IP. You must stay healthy

and live long enough to benefit from all the new scientific developments that

are in the pipeline. Another term is " anabolic therapy. " Anabolic means to grow

tissue. Some new pain treatments are meant to grow nerves and other tissue. Many

are truly hopeful such as hormone treatments and nerve stimulation, to name some

current front-runners in the race to cure IP. Your immediate job is to stay

alive and function- ing. Keep the pain away and maintain your mind, body, and

social life while awaiting the advances of re- search and science.

Think of your pain control program as though you are putting together a

patchwork quilt. You need lots of patches to create one huge quilt. Your pain

control program must have many patches ─ big and small. Do not throw away or

discard anything that helps control your pain even slightly. After all, we want

to patch you up as best we can!

Put another way, build a program of blocks or stepping stones. Once we identify

one stone or block that works, we do not throw it away ─ we add to it. There

is no question about it, control of IP is difficult because it requires many

building blocks. Remember this saying, " If you have a winning horse, keep riding

it until it drops or a better one comes along. "

KNOW YOUR CAUSE OF BY ITS MEDICAL NAME

Provided here is a Table of the most common causes of IP. You do not need to be

an expert on causes, but you must know your cause by its accepted medical name.

For example, you cannot have plain " arthritis. " You have " joint degeneration. "

You don't have a " bad back " you have " spine degeneration. " When dealing with

insurance plans and the medical system, you must state your problem as IP

secondary to its cause. For example, " IP secondary to spine degeneration. "

COMPLICATIONS OF INTRACTABLE PAIN

IP has numerous, severe complications which will shorten your life and

incapacitate you unless you take the bold measures required to control IP.

Totally untreated IP will cause death within days to weeks once it starts. This

occurrence, for example, has been observed following injuries to soldiers who

could not obtain morphine or other potent pain relievers. Educate all persons

you can about these complications. Why? Our health care system and insurance

industry, as a group, want to deny that severe compli- cations of IP exist. To

acknowledge that these complications exist means that IP must be considered a

TABLE OF COMMON CAUSES

⣠Spine degeneration Neuropathies of leg, arm, and chest wall

including... o Reflex sympathetic dystrophy

(RSD, often referred to as complex re- gional pain syndrome)

o Fibromyalgia

o Abdominal adhesions

⣠Pelvic neuropathies including vulvodynia and prostadynia.

⣠Interstitial cystitis ⣠Headaches Joint degeneration - neck, hip, knee â£

Systemic lupus erythematosus

Tennant - Intractable Pain Patient’s Handbook for Survival ©2007 8

serious catastrophic disease that is expensive to treat. The list here includes

conditions that are caused or worsened by IP.

*******This is IMPORTANT -CARDIAC-ADRENAL-PAIN SYNDROME

Severe, constant IP, causes the mid-brain area known as the hypothalamus to

over-activate the pitui- tary and adrenal glands, which in turn produce excess

blood levels of adrenaline, cortisol (the bodies natural cortisone), and related

chemicals. Excess adrenaline causes the pulse rate and blood pressure to rise,

and excess cortisol, overtime, causes loss of bone and teeth, osteoporosis,

weight gain, hypertension, diabetes, and immune suppression among other

complications. IP patients MUST find out if they have this syndrome, because it

causes too many serious

complications if it is not controlled. For example, a pulse rate or blood

pressure that remains high, over time, may cause any one of several

cardiovascular complications including arteriosclerosis, angina, heart attack,

and stroke. It is the author's belief that most IP patients die prematurely of

heart or stroke complications. Due to these complications, IP patients must

obtain the pain control they need to keep their pulse rate and blood pressure in

check.

BLOOD PRESSURE AND PULSE RATE - CRITICAL MEASUREMENTS

Uncontrolled IP drives up the pulse rate to over 84 per minute. Many patients go

over 100 per minute when their pain is in a flare or breakthrough episode. Blood

pressure may also go up over 130/90mm/Hg. It must remain below this figure.

It is critical to understand that uncontrolled pain produces damage and aging to

the body, and pulse and blood pressure let you objectively know if you are in

adequate control. You MUST obtain a blood pressure - pulse monitor for at-home

use. They are now quite inexpensive and can be obtained at most pharmacies. I

recommend you check your pulse and blood pressure daily. You particularly need

to check it during a pain flare or breakthrough episode to let you know just how

much danger you may be in during a flare. For example, if the flare drives up

your pulse rate above 120 per minute, you are at serious risk for a heart attack

or stroke. I have observed a number of IP patients who develop angina (severe

heart pain) during pain flares and require nitroglycerine. Use your pulse rate

and blood pressure to adjust your medication. Always let your medical

practitioners know what your pulse and blood pressure readings are running at

home. IP that causes blood pressure to elevate will not respond well to the high

blood pressure drugs used for ordinary high blood pressure treatment. Only

adequate pain control will lower high blood pressure caused by pain.

TABLE OF COMPLICATIONS

⣠TACHYCARDIA (high pulse rate)

⣠HORMONE DEFICIENCIES (adrenal, thyroid, ovary, testicle, pituitary)

⣠HEART ATTACK ⣠STROKE ⣠OSTEOPOROSIS ⣠TOOTH DECAY ⣠LOSS of LIBIDO

⣠DEPRESSION

⣠WEIGHT GAIN ⣠DIABETES ⣠HYPERTENSION ⣠HYPERLIPIDEMIA ⣠MEMORY LOSS

& CONCENTRATION ⣠INSOMNIA

⣠MUSCLE WASTING ⣠FATIGUE ⣠IMMUNE IMPAIRMENT / INFECTIONS

⣠WEIGHT LOSS / STARVATION WITH NO CONTROL

NECESSITY FOR OPIOID DRUGS

A fundamental fact about opioids is that they are the only medication that will

truly control IP. Why? The nervous system has specific pain relief trigger

points scientifically known as opioid receptors. Natural pain relief in the body

is caused by a group of chemicals known collectively as endorphins which attach

and activate these receptors. Since these pain relief sites receive endorphins

they are hence called " re- ceptors. " Endorphin is so closely related to morphine

that the name endorphin is derived from " end, " which is Latin for " in the body "

and " orphin " which is the last part of the word morphine.

The God-given poppy plant is the source for most medicinal opioids including

opium, morphine, co- deine, and hydromorphone, among others. Fundamentally,

opioid drugs are natural plant or herbal com- pounds. Consequently, they are

quite safe when taken at proper dosages and prescribed by a knowledgeable

physician. No other class of drugs now or in the future will likely relieve pain

like opioids since the natural endorphins in the brain and opium poppy plant

derivatives are essentially one and the same. They do not cause tissue damage

like many other medicinals including alcohol, aspirin, acetaminophen, and

anti-inflammatory agents, but they can produce sedation, impairment, overdose,

and hormone depletion. Historically, they have been widely used since the

Egyptian empire and by advanced societies all over the world who cared about the

relief of suffering and pain among their inhabitants.

BIAS AGAINST OPIOIDS

IP patients have to be aware of the history, bias, safety, and true

effectiveness of opioids since many parties in modern society have been and

continue to be on a campaign to ban or restrict their use. Every IP patient will

have to constantly face an ignorant bias against opioids. Bias and ignorance may

be thrown in your face by family, friends, doctors, nurses, government

officials, employers, and your health plan. The worst offenders, in my

experience, are the mental health industry and the sellers of non-opioid pain

treatments. Simply put, parties who have a financial interest in keeping

patients in uncontrolled pain continually bad-mouth opioids. Be prepared to

educate all comers, and above all, remember that IP requires opioids for

control. There is no option.

Why the bias? Opioids work too well and there is no substitute. They give an IP

patient a meaningful, extended, quality of life. I now have IP patients who have

safely and effectively taken high doses of opioids for over 20 continuous years.

Current medical knowledge indicates that IP patients can have a fairly normal

lifespan if they have access to a dosage of opioids which effectively controls

their pain.

The real motivation behind opioid bias is money. They are expensive treatments

for health plans including government plans. When IP is properly treated with

opioids, the patient no longer has to hang out in emergency rooms or hospitals,

undergo surgery, or go whimpering to a mental health clinic for " depression "

just to get a little relief. Additionally, you do not have to soak yourself in

alcohol, buy heroin from drug dealers, or become the neighborhood pothead. I

have heard many a government regulator, health plan bureaucrat, and even some of

my fellow doctors proclaim to me that they would like to see all IP pa- tients

deprived of opioids. Fortunately, these attitudes and biases are slowly

disappearing, but always be aware that they exist.

Please know about the biggest racket and fraud going on in medicine today.

Believe it or not, some medical hucksters are claiming that opioids cause pain,

and your pain will go away if you just detoxify, stop opioids, or get

psychological help!! What utter disregard for science and suffering!

In another section of this Handbook there is a section on support groups and

advocacy. Every IP patient should join some support group and band with other

patients, families, and advocates who support public access to opioid pain

relievers and support physician rights to prescribe opioids. I am only able to

write this Handbook because of political pressure exerted in recent years on

legislative and government regulatory agencies by groups of IP patients,

families, advocates, and doctors. Never take your supply of opioids for granted.

They work too well and have too many financial enemies. The life you save may be

your own.

FIRST STEP OPIOIDS

When you first start opioids for treatment, you will start with one listed in

the " First Step Table. " These opioids can be taken as needed, or on a regular

basis. This group of opioids have few side ef- fects and create little

dependence. Some contain acetaminophen, ibuprofen, aspi- rin, or other

potentiators which are com- pounds that make the opioid act stronger and last

longer. Some patients may require two of the " First Step " opioids which may be a

preferable treatment approach to the " Second Step Opioids. " First Step opioids

are short-acting in that they usually provide pain relief for only about 2 to 4

hours.

Before going to Step Two opioids patients should attempt to control their pain

with a Step One opioid coupled with one or more of the ancillary medications and

treatments listed in this Handbook. Vigorous attempts should be made to avoid

Step Two opioids, since they may produce complications.

STEP TWO OPIOIDS Think of your pain control program as though you are putting

together a patchwork quilt. You need lots of patches to create one huge quilt.

Your pain control program must have many patches ─ big and small. Do not throw

away or discard anything that helps control your pain even slightly. After all,

we want to patch you up as best we can!

Put another way, build a program of blocks or stepping stones. Once we identify

one stone or block that works, we do not throw it away ─ we add to it. There

is no question about it, control of IP is difficult because it requires many

building blocks. Remember this saying, " If you have a winning horse, keep riding

it until it drops or a better one comes along

.. " KNOW YOUR CAUSE OF BY ITS MEDICAL NAME

Provided here is a Table of the most common causes of IP. You do not need to be

an expert on causes, but you must know your cause by its accepted medical name.

For example, you cannot have plain " arthritis. " You have " joint degeneration. "

You don't have a " bad back " you have " spine degeneration. " When dealing with

insurance plans and the medical system, you must state your problem as IP

secondary to its cause. For example, " IP secondary to spine degeneration. "

COMPLICATIONS OF INTRACTABLE PAIN

IP has numerous, severe complications which will shorten your life and

incapacitate you unless you take the bold measures required to control IP.

Totally untreated IP will cause death within days to weeks once it starts. This

occurrence, for example, has been observed following injuries to soldiers who

could not obtain morphine or other potent pain relievers. Educate all persons

you can about these complications. Why? Our health care system and insurance

industry, as a group, want to deny that severe complications of IP exist. To

acknowledge that these complications exist means that IP must be considered a

MUSCLE RELAXANT-ANTI-ANXIETY AGENTS

The severe pain and high pulse rate of IP causes anxiety and muscle contraction.

A high pulse rate may make you feel jittery or nervous. In addition, you may

have an injury that may cause muscle contraction. Most IP patients find that a

muscle relaxant provides considerable additional pain relief and comfort. For

reasons that are not particularly clear to me, some muscle relaxants are not

effective in IP patients. Although pharmacologically classified as anti-anxiety

agents, some are effective in reducing high pulse rates and muscle spasms. Those

muscle relaxant-anti-anxiety agents that have proven to be popular with many IP

patients are listed in the Table. Do not take more than one of the agents in the

Table on the same day. The # 1 cause of sedation, falls, and accidents in IP

patients is overdose of this group of agents.

NERVE BLOCKERS

There are new drugs for pain relief that act by blocking the electricity in

nerves. Pain that is caused by nerve damage in the legs, arm, chest wall,

abdomen, or pelvis is often called " neuropathic pain. " These agents can be used

with opioids, and many patients can use these with a Step One opioid and avoid

the necessity of Step Two opioids. In milder forms of chronic pain, these agents

may work so well that opioids are not even necessary. IP patients can sometimes

reduce their opioid dosage with these

SOME SLEEP AIDS IP PATIENTS FIND EFFECTIVE

AID

Chloral Hydrate Triazolam Temazepam Zolpidem Amitriptyline

COMMON TRADE NAME

Somnote® Halcion® Restoril® Ambien® Elavil®

MUSCLE RELAXANT–ANTI-ANXIETY AGENTS

AGENT COMMON TRADE NAME

Carisoprodol Cyclobenzaprine Methocarbamol epam Clonazepam Lorazepam

Soma® Flexeril® Robaxin® Valium® Klonopin® Ativan®

NERVE BLOCKERS

NERVE BLOCKERS Duloxetine Pregabalin

COMMON TRADE NAME Cymbalta® Lyrica®

Tennant - Intractable Pain Patient’s Handbook for Survival ©2007 13

DON'T DEPEND ON ONE FAVORITE OPIOID OR ROUTE OF DELIVERY

One of the biggest mistakes an IP patient makes is to get too dependent on a

favorite opioid such as fentanyl, meperidine, or oxycodone or the way it is

delivered, such as an injection or lollipop. Why? You may eventually get

tolerant to the opioid and have to switch. Also, many are extremely expensive

and health insurance plans simply will not pay for them. Their position is that

the older generic opioids such as morphine, methadone, hydrocodone, meperidine,

and hydromorphone are good enough for pain control.

You must identify several opioids that are effective for you. Do not plan on

getting the one you most want. Cost factors have simply ushered in a situation

that has priced some of the Step Two and break- through opioids out of range.

You should immediately look at the lists of opioids in this Handbook and

determine which ones you have and have not tried. At a minimum, you should

identify four that you can take and which are effec- tive. Also, do not get your

heart set on route of administration such as a lollipop or injection. For

survival, you must learn what your health plan will pay for. Do not expect your

health plan to give you a special exception to their usual opioids and costs

policy. It is usually a bad idea to take brand name opioids. Why? Sooner or

later your health insurance will likely disallow brand names.

ANCILLARY MEDICATIONS

In addition to opioids, there are additional medications that almost all IP

patients will require. One is a sleeping aid, and the other is a muscle

relaxant. Hormone replacement of adrenal hormones, thyroid, es-

BREAKTHROUGH OPIOIDS

OPIOID COMMON TRADE NAMES

Fentanyl Transmucosal ( " lollipop " or buccal tablet)

Hydromorphone (liquid, injection, or suppository) Meperidine (liquid or

injection) Oxycodone (liquid)

Morphine (liquid, injection, or suppository) Oxymorphone (tablet) Hydrocodone

(liquid)

Actiq®, Fentora®

Dilaudid® Demerol® Oxydose®

Roxanol® Opana® Tussionex®

Tennant - Intractable Pain Patient’s Handbook for Survival ©2007 12

trogen, or testosterone may also be required as pain and/or opioid medications

may deplete them. You may also need mediation for nausea, constipation, or

weight control.

\

STRETCHING EXERCISES

Common strains and sprains that occur commonly with sports or excess physical

activity tend to heal rapidly with repetitive motion and strengthening

exercises. An example is lifting a weight several times to help heal and train

an injured shoulder.

But IP patients are different and can even injure themselves if they participate

or practice many of the exercises used for common strains and sprains. Why? IP

results from nerve damage that is usually sur- rounded by scar tissue. Once IP

and scarring has developed, one must be extremely cautious and careful when

manipulating these tissue areas. For example, an exercise that suddenly pulls

apart a scar may lead to additional scarring, nerve damage, and pain. Even if a

damaged nerve wants to regrow, if it is trapped in a scar, new growth may not be

possible. The reduction and elimination of scarring and the promotion of

neurogenesis requires a special type of exercise known as " Stretch and Hold. "

These exercises are simple to execute.

Merely stretch your arm, leg, or spine to a point that you feel a tug or pull

(not pain!!) at the painful site. Then hold the position for a count of 15 to 30

seconds. Repeat this exercise a few times each day. The simple basic schematic

for stretching with spine degeneration is shown at the end of this Handbook.

" Stretch and Hold " is designed to gently pull apart scars over time and lengthen

the damaged areas so nerves can regrow.

DANGER: Do not do any exercise, physical therapy, gymnastics, or other activity

that produces pain. Do not do any activity that increases your risk of tripping

or falling.

REMEMBER. Pain is your enemy. If you cause it, you risk additional nerve damage

to your already dam- aged area and you will age a little faster. As long as pain

is not produced you may do any physical activity you desire including swimming,

bicycling, walking, sex, or treadmill.

OTHER IMPORTANT POINTS THAT PEOPLE WRITE ABOUT : INTERVENTIONAL

PROCEDURES,COMING OFF MEDS ETC.

Every IP patient will encounter someone in their life – be it a spouse,

pharmacist, minister, doctor, friend, or relative who will try to talk you into

stopping your medication. Do not be foolish. Review the complications of IP. If

you must, simply take your opioids for the remainder of your life. Just do not

fall for some ignorant or fraudulent line that you should stop your medication,

as long as you have pain.

If you still have pain and decide to go into a detox center to stop your drugs,

do not expect your pain doctor to either approve or take you back as a patient.

Why? Either you have IP and need medication or you do not. Remember, detox

centers are for addicts, not legitimate pain patients. If you let anyone –

spouse, psychiatrist, minister, or pharmacist – talk you into stopping

medication, just remember that there are several tombstones in the cemetery that

are there because an IP patient stopped their drugs too abruptly and caused a

severe pain flare and heart stoppage.

Here are absolute

DONT'S

1. Do not try to withdraw from medication until you have at least some pain free

hours each day. Until you have pain-free hours you have too much nerve damage to

reduce pain control medica- tions.

2. Do not believe any claim that your medication is causing your pain or that

pain will be gone if you suddenly stop your medication.

3. Do not withdraw rapidly. Lower your dose 5% to 10% a week, and simply return

to your regular daily dose or hold your dosage at a lowered level if your pain

resumes.

4. Do not let anybody put you in a hospital to " detoxify " or take you off your

medication. Do it slowly over 3 to 4 months in your own home environment.

Withdraw at a speed that does not cause your pain to flare.

Tennant - Intractable Pain Patient’s Handbook for Survival ©2007 23

There is a good way to get off opioids or to lower your dose. Once you have

lowered your daily dose, switch to a milder, Step One opioid which has

acetaminophen in it. Try one of the new nerve blockers such as duloxetine

(Cymbalta®), and a muscle relaxant. Stay on this regimen for 2 to 3 months and

then reduce these medications. Your doctor can probably assist with some other

withdrawal tips and medications. Biggest tip: many chronic disease patients such

as diabetics have to take medication all their life; if this is necessary,

simply continue taking your pain medication – you do not have to stop.

INTERVENTIONS – A NEW TERM IN PAIN TREATMENT

The term intervention is now a term that is used to describe a set of procedures

that may permanently or temporarily reduce the severity of your pain. Some

anesthesiologists and rehab physicians now refer to themselves as

" Interventional Pain Specialists. " These physicians primarily specialize in

medical procedures involving the spine. Consequently, if you have spine

degeneration as the cause of your pain, you should see an interventional pain

specialist to determine if there is a procedure that can help you.

Once you get your pain under control with opioids and other measures listed in

this Handbook, you should consider the procedures and interventions that modern

medicine has to offer. For example,

injections in or around the spine, laser, Botox®, or prolotherapy may

permanently reduce some of your pain. The very best time to try interventions,

including surgery, is when your pain is under control. Why? Con- trolled pain

means your hormones and immune system are in good shape to help you heal. Many

IP patients often believe that procedures or interventions they attempted in the

past won't work in the future. This may not be true since efforts in the past

were likely attempted when pain was not controlled. Some times it pays

handsomely to try again.

There are two cardinal rules. Do not attempt an intervention that causes pain.

Simply stop in the mid- dle of the procedure if necessary. The second is don't

stop your medication to try a procedure or intervention. Only an ignorant or

biased practitioner will even suggest you stop your medication to have surgery

or an intervention. Turn and run from any practitioner who may suggest this.

IMPLANTED OPIOID PUMPS AND ELECTRICAL STIMULATORS

Interventional pain doctors now specialize in implanting opioid pumps and

electrical stimulators in the spinal cord. Opioid administration directly into

the spinal cord is called " intrathecal administration.†If you find you cannot

adequately control your pain with the Step One, Step Two, and Breakthrough

Opioids listed in this Handbook, you should consider an implanted intrathecal

device. These implanted devices by-pass the stomach and liver to place opioids

directly into brain fluids. Often times pain relief, by this procedure, is far

superior to other methods of administration. In addition, there is a new

medication called ziconotide (Prialt®), which is not an opioid, but provides

great pain control and can only be taken through an implanted intrathecal

device.

Another successful implant is known as a " spinal cord stimulator.†These

devices send a special kind of electrical signal into the spinal cord and nerves

that go into the legs and arms. Particularly with some cases of reflex

sympathetic dystrophy and neuropathies, these new stimulators may provide

excellent relief.

While no one likes the idea of an implanted device, the modern implants can

often provide excellent pain relief. Be honest with yourself. If medical

management is not getting the job done for you, ask one of your physicians to

refer you to an " Interventional Pain Specialist.†In most cases these

interventionalist pain doctors can test you ahead of time to see if the implant

will work so you do not have to risk a proce- dure. IP patients who have

implants still have to take other medications including opioids. Do not fall for

Tennant - Intractable Pain Patient’s Handbook for Survival ©2007 24

any line that an implant will totally substitute for your current opioid

medication. You may be able to re- duce your medications with an implant, but

implants will not totally substitute your need for medication. Be advised that

these implants are quite expensive and your health plan may resist paying for

them.

HORMONE REPLACEMENT AND TREATMENTS

Hormone treatment along with good pain control, protein diet, stretching

exercises, and positive mental attitude give you the best hope for neurogenesis

and permanent healing. Replacement means that you take hormones that are

depleted by pain and/or medications. Be clearly advised that a most serious

complication of opioids is hormone depletion, particularly testosterone. You

will need a blood test to determine whether this is the case. Testosterone, in

males and females, is necessary for good pain control, energy, weight control,

bone growth, libido, and relief of depression.

Severe IP may deplete certain pituitary and adrenal hormones.

Although research on hormones is in its early stage, I have found that the

adrenal hormone, pregnenolone, is almost always depleted by IP. This hormone

naturally acts to heal nerves and promote energy and mental ability. Patients

who don't have enough pregnenolone are depressed, exhausted, and have poor

mental concentration, memory, and pain control. If you have IP, I recommend a

daily dose of 50 to 200mg. The only known side effect at these dosages is acne,

and if this occurs, reduce your dosage. Some IP patients appear to have inade-

quate thyroid or estrogen levels. You may need to be tested for these hormones

and take replacements. Some hormones such as chorionic gonadotropin and growth

hormone cause tissue growth (i.e. anabolic effect) and appear to offer hope in

permanently reducing IP.

QUALITY OF LIFE

Make a better quality of life your Number 2 priority after you get some pain

relief. You will find it a tough job. Chances are you will always have the pain

nagging at you and you may have spent so much time in bed or on the couch that

you have forgotten how to socialize and communicate with the outside world. You

may also have spent so much time wallowing in your self-pity that you have

forgotten how to be a friend to anyone. Pain robs one of interest in much else

besides relief. Whatever. With opioids and reduced pain you MUST start

communicating and talking with other people. You simply have to go visit, call

on the phone, and talk with live people. In this situation, e-mails and chat

rooms on the internet will not entirely cut it. Talk is therapy for a pain

patient.

You will need some at-home hobbies or activities. Something that you enjoy and

that at least partially takes your mind off your pain. Work for pay or

volunteer. Drive a car if at all possible.

You will need to come to grips with your religious beliefs. Most patients with

IP have either thought about suicide or come close to death. Some have had near

death experiences or technically died and come back. Regardless of your

particular situation, please give prayer and your church your best effort with

time and thought. Remember. Your survival instinct, attitude, and modern

medicine have given you a lease on life, and your God still wants you here on

earth for some purpose that only you know.

PLANTS, PETS, AND MUSIC

You need all three. There is something about live DNA around you that is a great

comfort. Make no mistake. Pets like a dog or cat who is attached to you will

literally know when you are in pain. Sometimes they will know you are about to

have a flare before you do!

Tennant - Intractable Pain Patient’s Handbook for Survival ©2007 25

Plants cannot speak or cuddle up to you, but I know this. IP patients who keep a

lot of those green, leafy, colored jewels in pots around the house or lawn just

do a lot better with pain control. Your favorite music is known to activate

endorphins. No wonder some pain patients find considerable comfort when they

listen to their favorite songs. Play it again, SAM! Better yet, drag out the old

piano or violin if you used to play.

Hope this helps someone as it helped me and still does. For seven years I was

given " interventional " treatment and the Doctor couldn't think I had that much

pain-Well after discogram and shows three vertebrae were gone, he said, I guess

you do hurt.

Bennie

[Guest guest]

Wow what a tough position to be in. I believe that quality of life is

important. Just as medication can help improve daily life activities, some can

make them so much more difficult.

I would most likely take the same step as you. I will keep postive thoughts for

you health. Hugs, Tami

--- wrote:

>

> Would you quit taking a potentially life-saving drug to get rid of

>

> What would you do? Would you trade a huge chunk of your pain for the

> small risk of a cancer returning? With the drug I have a 5-7% chance of it

coming back. Without it, a 10-14% chance.

[Guest guest]

Dear ,

My dearest friend is now in her third year Cancer Free. She also had the same

Cancer and Stage as you. She was not aware at the time she was diagnosed, that

two of her Aunts had been diagnosed in their lifetime as well. Neither of them

survived because, at that time Mammograms weren't as prevalent for early

detection and Cancer wasn't as easily treatable or manageable, so to speak, as

today.

Based on that history, she chose to have a double mastectomy and later had

reconstructive surgery. She chose to take pain medication only directly after

the surgery and quit soon after. She still takes a medicine to suppress a return

of the cancer

I myself have a diagnosis of several illnesses that induce constant pain.

Oftentimes, it can be unbearable, which I'm sure you're very familiar with. I

tried a few pain medications, but I hate the way they make me feel, the way they

make me sleepy and groggy. The amount of life I miss is ridiculous and I can't

engage with life well while taking them. In fact, the relief I get is so minor,

it's really not worth my time to take them.

I have been told that I have a really high tolerance for pain. It may be part of

it...but in reality, I think it's a combination of being able to pray, meditate

and keep myself busy. It has taken me a long time to get to that point...it's

not easy to do or to continue to do and sometimes it doesn't work at all.But

doing these things distracts me from thinking about the pain. I find that if I'm

busy listening to someone else's problems and trying to help them out, I don't

have any time to think much about my issues.

As far as if you should continue to take medicine that puts you at risk for more

cancer but stopping it will relieve your pain...I feel it's a " pick your poison "

decision! Darned if you do and darned if you don't. Don't you hate it when that

happens! LOL!!I have had to make that decision numerous times.

I take over 21 prescriptions and about 9 supplements. Many of my drugs have

negative side effects and two almost guarantee that they will eventually cause

me a variety of cancers, kidney failure and heart disease or stroke. Some of

the side effects of medications I take for some conditions, complicate some of

my other medical conditions.

All in all, I have chosen some poison and others I have turned down. I have

tried to use my best judgement to make life tolerable for me, my family and

anyone that has to care for me. That's the best I can do for now.

Best of luck and I would love to hear what you decide for yourself.

Don't worry, you already have the right answer in your mind and heart, just

listen and trust yourself!!!

Debie in Colorado

--- Drastura wrote:

>

> What would you do? Would you trade a huge chunk of your pain for the small

risk of a cancer returning? With the drug I have a 5-7% chance of it coming

back. Without it, a 10-14% chance.

[Guest guest]

Steve, Prayers with you guy. The little guys I treated back in the day of Kojak,

when their hair feel out I gave them lollipop, no actiq back then and the

pretended to be dectective. They have an enormous understanding of death and are

so brave. I remember the articles of Bernie Segal and Dr. Simonton teaching

techniques of pretending in their mind they were playing Pac-Man and the Pac-Man

were eating the cancer cells. Have I dated myself : ) At least I did not add

Columbo or Mod Squad, lol Bennie

, jealous on Westminster and go for it and be as healthy as you can.

Sarcoma ? Wish you well, ! Keep as well as you can. What breed do you show

or like? Carins are my fav but I love them all. My hot belly boy is sleeping

beside me keeping me warm, my dog, not my husband, ha.

Take Care.

Bennie

[Guest guest]

Debbie, I don't know how you feel about it but since medical mj is legal in your

state have you tried it?  You don't have to smoke it anymore. There they have it

in soda form, candies, and capsules. 

It's not legal where I live yet so I can't use it but I am hoping that it will

be legal soon because it is a natural herb that God put on this earth and he put

an herb here on earth for all sicknesses. 

Man has just made everything chemical and toxic.There are tons of studies on it

now and it actually shrinks brain tumors as well as relieve pain and

nausea. Just a thought not pushing it on anyone.

As far as giving up the cancer med that is a tough decision. I guess it would

come down to quality of life. I hope I never have to make that decision.

My aunt was just diagnosed with a rare type of bone cancer. It's actually in the

beginning stage and she has to take chemo pills but the doctor told her it would

still progress even with treatment and she will have to go on a drip.

Her bones are literally crumbling it her hands and arms. She will die a slow

horrible death. She is the youngest of my mom's five sisters and she is a

Christian as we are and a really sweet good person.

The whole family is devastated. She has four grandchildren that she keeps all

the time and she has worked as a manager of a school cafeteria for years and

loves it but she is going to have to quit.

I hope that it works out for you. I will send a prayer your way.

Shell

[Guest guest]

Bennie, this is an amazing read. Thanks SO much. I was particularly interested

in the discussion of low or depleted adrenal hormone. My PA at the Pain Clinic

mentioned that last time when I complained to her that my doctor kept lowering

my Synthroid, making me even more tired. I will ask her about it again next week

when I get my injections.

I am glad the article mentioned pets! We all know how much they help. Plants,

not so much. It makes me sad every time I kill one. They aren't safe here. :-(

> ,

>

> Realize that hormones feed cancer cells and as you get older your rates

usually are higher overcoming pain. The Cancer Centers of American have cancer

consultants you can talk to online and they have statistics and research to back

up what they say.

[Guest guest]

Shell wrote:

> Debbie, I don't know how you feel about it but since medical mj is legal in

your state have you tried it? You don't have to smoke it anymore. There they

have it in soda form, candies, and capsules.

Shell,

I saw a special on this tonight and commented to my husband, let the president

legalize it and we can charge taxes on that, like liquor or cigarettes and the

deficit would be paid off.

I was trying to be funny.

Yes, it is a " herb " but many of pharmaceutical medicines come from " natural

things " Estrogen came from sterilized horse pee and on the list goes.

The TCH in the herb is toxic and if God put many things on earth and many are

toxic so for me in my opinion, I can't say because God made it, it is better

than opoids as opium comes from poppies and those are natural.

The THC in the herb has a long term half life and stays in the many body organs

for months. The main chemical placed in other things is the THC and then it

becomes a " chemical " also It also helps Glaucoma. I agree with most of what you

say but not all pharmaceuticals are man made chemicals, they too came from

natural products.

Here are the meds made from plants http://www.rain-tree.com/plantdrugs.htm ,•

Types of Chemotherapy and Chemo Treatments

www.chemocare.com/whatis/types_of_chemotherapy.aspCached - Similar

These types of drugs are cell-cycle non-specific. There are ... Plant alkaloids

are chemotherapy treatments derived made from certain types of plants. The vinca

....

•

I hope remission for you Aunt and I found a great site , Cancer Centers of

America, they treat rare cancers with holistic approach including diet,

spiritual support etc. You can go to their website and speak IM to the cancer

specialist immediately. I was impressed and have an interest as I used to be a

radiation therapist.

Most Doctors may pull you off cancer meds early and helps sometimes as the body

may take a rest from the " toxic chemicals " . I hope her palliative care will be

supportive so she is given pain relief and Hospice gives her a plan that makes

the transition from this life to the other easier. I will put your family in my

prayers and thoughts.

As a good Christian woman, your Aunt will draw on her faith and probably is more

at peace knowing her belief. Let us know how you are doing also.

http://www.mfiles.org/Marijuana/medicinal_use/b3_glaucoma.html and

http://en.wikipedia.org/wiki/Cannabis_%28drug%29 are good articles . You might

enjoy a book " Back to Eden " in which a naturalist did lifetime research in

natural healing. At one time, I only took herbs and never any medications except

coffee and diet coke : )

Back to Eden by Jethro Kloss can be bought online here and on their webiste

The theory pot shrinks tumors is that the only research was done on MICE .

http://www.alternet.org/story/9257

and http://library.thinkquest.org/C007016/drug_production.html Bennie

>

>

[Guest guest]

No, cancer does not give ANYONE a break. I have a DIPG or DIPA

(depending on who you ask).

DIPG- Diffuse Intrinsic Pontine Glioma

DIPA- Diffuse Intrinsic Pontine Astrocytoma

Diffuse- fuzzy outline [no radiation because of the fuzziness and

locaiton combined]

Intrinsic- inside the brainstem, not on the surface [no surgery]

Pontine- located in or on the Pons (part of the brainstem)

Glioma- primary brain tumor affecting the glial cells

Astrocystoma- primary brain tumor, subtype of glioma, affecting the Astrocytes

Astrocyte- subtype of glial cell

Chemotherapy is also not an option. My only hope is that, eventually,

immune therapy will become an option, but my doctors believe that I

already have an abnormal immune system, which could be an issue. I'd

hate to make any of my symptoms worse.

Steve M in PA

> wrote:

....Steve, what kind of cancer do you have? You seem way to young. But

then, I was 14 when I had bone cancer. Cancer doesn't give anyone a

break, does it?

[Guest guest]

Bennie,

You message just inspired me to find a way to play PacMan (and Tetris,

and ). I sound an emulator online and a site to download the old

games.

If anyone less is interested, bit.ly/CoolROM

They have games and emulators for Mac and PC

NEStopia is the best one for NES games on a Mac bit.ly/NEStopia

If anyone wants the original links, please let me know. I prefer to

use bitly links because they tend not to get broken up and are easier

to use in email.

Thanks

Steve M in PA

> Bennie wrote:

> I remember the articles of Bernie Segal and Dr. Simonton teaching techniques

of pretending in their mind they were playing Pac-Man and the Pac-Man were

eating the cancer cells.

[Guest guest]

Bennie,

You message just inspired me to find a way to play PacMan (and Tetris,

and ). I sound an emulator online and a site to download the old

games.

If anyone less is interested, bit.ly/CoolROM

They have games and emulators for Mac and PC

NEStopia is the best one for NES games on a Mac bit.ly/NEStopia

If anyone wants the original links, please let me know. I prefer to

use bitly links because they tend not to get broken up and are easier

to use in email.

Thanks

Steve M in PA

> Bennie wrote:

> I remember the articles of Bernie Segal and Dr. Simonton teaching techniques

of pretending in their mind they were playing Pac-Man and the Pac-Man were

eating the cancer cells.