Tag Archives: cancer

Headaches, Headaches, Headaches 24/7

I have survived cancer! I can not be happier and I fought with ALL I had inside me to beat cancer. I had only been engaged to the love of my life for four weeks and I had two children ages 7 and 10. There was no way I was leaving any of them.

My parents moved in as I was a single mom at the time and took care of me 24/7. They were the best they cooked and cleaned and got me to every single doctor’s appointment I had.

After two years I am cancer free and life should be perfect right? Well due to my tumor in my sinuses and right eye orbit I have been left with headaches 24/7. I look soooo much better then I have in the past two years!

I try to be perfect for everyone. But inside I am breaking. My headaches that I try to hide from everyone are killing my very being. I am on pain medicine and it really does not see to help it too much. While it does decrease the pain sometimes the majority of the time I have a headache. I my temple, forehead, neck and face….

I seem to snap quickly as it is always there then the littlest things set me off. I typically can not control it, as again, inside I am in knots from the pain and then something aggravates me and off I go.

I do not want to complain about my headaches to my husband as he has heard it! I do not want to complain to my parents as I do not want them to worry any more then they have to. I have to be a strong mom for my kids so most of the time I just put a smile on and not let anyone see what I am going through inside.

Who can help? This pain has to go away as I can not continue to live like this. It is not fair it is debilitating and is ruining my happiness and who I am as a person.

I want my “old” self back, the one before cancer who was happy and fun to be around. The one that was silly and loved to be outside doing just about anything.

Pleas help me find my relief!

Ziconotide – novel analgesic

Several studies showed the potential for the novel analgesic ziconotide in the chronic pain setting. Two studies examined the titration schedule, rapid or slow, as a component that may affect the efficacy and safety of the treatment. In one study by Fisher and colleagues, the investigators followed 27 patients who received ziconotide for 1 year after an initial rapid titration. The median time to stable dosing was 196.5 days, with a median maintenance dose of 0.34 mcg/hour. In the slow titration study, the same investigators followed 119 patients and found that the median time to dosing stability was 279 days, with a median dose of 0.24 mcg/hour. The investigators found that slow titration was feasible and may prevent some of the adverse effects associated with ziconotide, such as dizziness and confusion. Another investigator used the slow titration schedule and found it effective, but explained in an interview that patients need appropriate counseling so that they expect a slow change, with maximum benefits seen after 6 months of treatment. A meta-analysis showed that the treatment is effective in a variety of chronic pain settings and is effective in both cancer and non-cancer-related pain.


ACTIQ is a medication in a unique oral transmucosal delivery system (OTS?). It offers personal pain control by providing pain relief in 15 minutes (though you may not experience full relief for up to 45 minutes after finishing an ACTIQ unit). Actiq is designed to be dissolved slowly in the mouth in a manner to facilitate transmucosal absorption.

Actiq is supplied in six dosage strengths. Each unit is individually wrapped in a child-resistant, protective blister package.

Active Ingredient: Fentanyl citrate C-II

Pregnancy – Category C

Fentanyl has been shown to impair fertility and to have an embryocidal effect with an increase in resorptions in rats when given for a period of 12 to 21 days in doses of 30 mcg/kg IV or 160 mcg/kg subcutaneously.

Actiq Dose
200 mcg, 400 mcg, 600 mcg, 800 mcg, 1200 mcg, 1600 mcg

General considerations: Each
transmucosal unit contains about 2 g of sugar. Frequent consumption of products containing sugar may increase
the risk of dental caries, and dry mouth associated with opioid use may add to
the risk.
Patient counseling:  Diabetic
patients should be advised that each
unit contains about 2 g of sugar. To ensure appropriate oral hygiene, all
patients should be told to consult their dentist.

Manufacturer: Cephalon
Manufacturer’s website: www.cephalon.com
Product website: www.actiq.com


Breakthrough cancer pain in patients with malignancies who are already
receiving and who are tolerant to opioid therapy for their underlying persistent
cancer pain:
200 µg to start; thereafter, closely follow patient
and change dosage level until patient reaches a dose providing adequate
analgesia using a single dosage unit per breakthrough cancer pain episode.
Redosing within a single episode: Until appropriate dose is reached,
patients may need to use an additional unit during a single episode. Start
redosing 15 min after previous unit has been completed (30 min after start
of previous unit. While patient is in titration phase and consuming units
that might be subtherapeutic individually, patient should take to more
than two units for each individual cancer breakthrough pain episode.

Patients considered to be opioid tolerant are taking at least 60
mg/day of morphine, 50 µg/h of transdermal fentanyl, or an equianalgesic
dose of another opioid for at least 1 wk.

Initial prescription: Prescribe an initial titration supply of
six 200-µg units to limit the number of units in the home during
titration; patient should use all units before increasing to a higher dose.

Increasing dose: If more than one unit
is needed per episode during treatment of several consecutive breakthrough
cancer pain episodes, consider an increase in dose. At each new dose during
titration, prescribe six units of the titration dose. Evaluate each
new dose over several episodes of breakthrough cancer pain (generally 1-2
days) to determine whether new dose provides adequate efficacy with acceptable
adverse events. Incidence of side effects is likely to be greater during
initial titration period.

Administration: Immediately before use, open foil package with
scissors. Place unit between cheek and lower gum, occasionally moving drug
matrix from one side to another using handle. Unit should not be chewed;
if chewed or swallowed, lower peak concentration and bioavailability may
occur. Advise patient to consume unit over 15 min; longer or shorter
consumption time may lead to lesser efficacy.

Titration of dosage: Individually titrate to a dose providing
adequate analgesia and minimal side effects. If signs of excessive opioid
effects appear before unit is consumed, remove dosage unit from patient’s
mouth immediately, dispose of unit properly, and decrease subsequent doses.
Patients should record their use of drug over several episodes of breakthrough
cancer pain and review their experience with their physicians.

Maximum daily dose: Once successful dose has been found, limit
consumption to four or less units/day. If consumption increases above this
level, reevaluate dose of long-acting opioid used for persistent cancer

Dosage adjustment: Dosage adjustment of both fentanyl and the
maintenance opioid analgesic may be needed to continue to provide adequate
relief of breakthrough cancer pain (see "Increasing
," above). Consider increasing around-the-clock opioid dose
used for persistent cancer pain in patients who have over four breakthrough
cancer pain episodes daily.

Disposal of units: Advise patients to dispose of completely used
and partially used units. After complete consumption of unit and total
dissolution of matrix, throw handle away in a trash container out of reach
of children. If any drug matrix remains on handle, place handle under hot
running tap water until all of the drug matrix is dissolved, and then dispose
as above. Dispose of handles in the child-resistant container at least
once daily. If patient does not consume the entire unit and remaining drug
cannot be dissolved immediately as above, temporarily store the unit in
the provided child-resistant container until proper disposal is possible.
To dispose of unused units, remove unit from pouch using scissors, hold
unit by handle over the toilet bowl, cut off drug matrix end using wire-cutting
pliers so that it falls into the toilet, and dispose of handle in a place
out of reach of children; then flush toilet twice after 5 units have been
cut and deposited into the toilet. Do not flush entire units, handles,
foil pouches, or carton. If caregivers need more information, instruct
them to call 800/615-0187.

Discontinuation of therapy: A gradual downward titration is recommended
for patients discontinuing opioid therapy; it is not known at what dose
level the opioid may be discontinued without producing signs and symptoms
of abrupt withdrawal.

Patient Monitoring

Patient instructions: Question patients or caregivers of the
presence of children in the home on a full-time or visiting basis. Advise
patients and caregivers that this dosage form contains a medicine in an
amount that could be fatal to a child; partially consumed units pose a
particular risk. Instruct patients and caregivers to keep all units out
of the reach of children, and to discard opened units properly in a secured
container. Supply patients and providers with the Actiq Welcome Kit, which
contains educational materials, safe storage containers, and a patient
safety video; give patients the opportunity to discuss the video. For more
information on these materials, call 800/615-0187. Advise patients to consult
their dentist to ensure appropriate oral hygiene. Inform diabetics that each
unit contains about 2 g of sugar.

General Considerations

Hypersensitivity: Contraindicated in patients hypersensitive
to fentanyl or any component.

Inappropriate uses: Because of risk of life-threatening hypoventilation
at any dose in patients not taking chronic opiates, drug is contraindicated
in managing acute or postoperative pain. Risk of respiratory depression
begins at fentanyl plasma levels of 2 ng/mL in opioid nontolerant individuals;
do not use in opioid nontolerant patients.

Respiratory depression: Clinically significant hypoventilation
may occur; carefully observe patients for symptoms of respiratory depression.
Hypoventilation may occur more readily when opioids are given with other
respiratory depressants. Titrate with caution in patients with chronic
obstructive pulmonary disease or preexisting medical conditions that may
predispose to hypoventilation; normal analgesic doses of opioids may further
decrease respiratory drive to point of respiratory failure.

Ambulatory patients: Caution patients not to engage in potentially
hazardous activities requiring full mental alertness.

Sugar content/dental caries: Each unit contains about 2 g of sugar.
Frequent consumption of products containing sugar may increase risk of dental
caries, and dry mouth associated with opioid use may add to risk.

Renal or hepatic impairment: Use caution because of importance
of the liver and kidney in the metabolism and excretion of drugs and effects
on plasma binding proteins.

Advanced age: Elderly patients are twice as sensitive to effects
of fentanyl as are younger patients. Use caution.

Adverse reactions: Side effects seen are typical of opioids;
adverse events frequently will stop or decrease in intensity with continued
use, as patient is properly titrated. Manage side effects accordingly.

Dependence: Physical dependence usually does not occur until
after several weeks of continued opioid usage; tolerance initially is manifested
by shortened duration of analgesic effect and decreased intensity of analgesia.

Head injuries, increased intracranial pressure: Use extreme caution
in patients who may be particularly susceptible to intracranial effects
of CO2 retention (eg, those with increased intracranial
pressure, impaired consciousness). Opioids may obscure clinical course
of patients with head injury; use only if clinically warranted.

Cardiac disease: Use caution in patients with bradyarrhythmias;
drug may produce bradycardia.

Pregnancy: Use only if expected benefits justify potential fetal
risks (Pregnancy Category C).

Labor and delivery: Not indicated for analgesia during labor
and delivery.

Breast-feeding: Do not use in nursing mothers.

Pediatric use: Appropriate dosing and safety in opioid tolerant
children under 16 yr of age with breakthrough cancer pain not established.

Adverse Reactions
Frequent reactions (incidence of 1% or more) are printed
in italics. Reactions were reported in 254 patients taking any dose
tested. All patients also were taking concomitant opioids, such as sustained-release
morphine or transdermal fentanyl, for persistent cancer pain.

Cardiovascular: Migraine (1% or more); deep
thrombophlebitis, hypertension, and hypotension (< 1%).

Dermatologic: Pruritus, rash, and sweating (2%); alopecia
and exfoliative dermatitis (< 1%).

Digestive: Nausea (23%), vomiting (12%), constipation (4%);
diarrhea, dyspnea, and flatulence (1% or more);
anorexia, eructation,
esophageal stenosis, fecal impaction, gum hemorrhage, mouth ulceration,
and oral moniliasis (< 1%).

Genitourinary: Vaginal hemorrhage, dysuria, hematuria, urinary
incontinence, and urinary tract infection (< 1%).

Neurologic: Dizziness and somnolence (17%), asthenia (9%),
headache (6%), confusion (4%), anxiety (3%), abnormal gait, dry mouth,
nervousness, and vasodilatation (2%), hallucinations, insomnia, abnormal
thinking, vertigo, and hypesthesia (1% or more);
abnormal dreams, urinary
retention, agitation, amnesia, emotional lability, euphoria, incoordination,
decreased libido, neuropathy, paresthesia, and speech disorder (< 1%).

Respiratory: Dyspnea (4%); pharyngitis, increased cough (1%
or more);
hemoptysis, pleural effusion, rhinitis, asthma, hiccup, pneumonia,
respiratory insufficiency, and increased sputum (< 1%).

Miscellaneous: Accidental injury and abnormal vision (2%);
pain, fever, abdominal pain, chills, back pain, chest pain, infection,
peripheral edema, and dehydration (1% or more)
; flu syndrome, abscess,
bone pain, anemia, leukopenia, edema, hypercalcemia, weight loss, myalgia,
pathological fracture, myasthenia, and taste perversion (< 1%).

Drug Interactions

CNS depressants, including alcohol; sedatives, hypnotics, general
anesthetics, phenothiazines, tranquilizers, skeletal muscle relaxants,
sedating antihistamines, other opioids:
Increased CNS depression. Hypoventilation,
hypotension, and profound sedation may occur.

Potent inhibitors of cytochrome P450 3A4 isoform (eg, ketoconazole,
erythromycin, and certain protease inhibitors [eg, ritonavir]):
or prolonged CNS depression. Hypoventilation, hypotension, and profound
sedation may occur. Monitor patients for a change in opioid effects and
adjust dose, if warranted.

MAO inhibitors: Not recommended for use in patients who
have received MAO inhibitors within 14 days, since severe and unpredictable
potentiation by MAO inhibitors reported with use of opioids.

Living With Pain

Hi Everyone. I’m new to this wonderful site. Received an email from Vitali and have been encouraged and comforted to meet more folks and their loved ones trying to make a life IN SPITE of chronic pain.

I read Jana’s entries about her husbands experiences with Myelograms. I had my first AND LAST… in Oct.’03. It was terribly painful. I begged the doctor for even a little versed and he wouldn’t budge. WHY?!! The worst part was that the test only confirmed what we already knew WITHOUT the test!

Allow me to bore you for a moment, with a bit of MY STORY:
I was born with Spina Bifida which is a neuro-tube birth defect. But I was quite fortunate as a child and experienced much less complications than most children born with this. I walked, ran, attended school and was involved in everything from horseback riding to dirtbikes! I met the love of my life at the tender age of 16 and we were married. ANd then when I was 19, I defied the doctor’s predictions and had the first of our 3 daughters.

Unfortunately it was when I reached 30 that all “hell broke loose” 🙂 I began having increasing pain in both legs from top to bottom. I went from Dr. to Dr. and received diagnosis such as “depressed housewife”…. “just wanting drugs”….”minor arthritis”..etc. I’m gonna do my best to keep this really short, so I’ll skip ahead a few years now. AFter more than 3 yrs. of increasing pain with nothing more than Tylenol, Motrin, or if the doc was feeling REALLY generous… “Tylenol 3” (Yes, Jana… “bandaid on a heart attack”!)… finally through some miracle I met Dr. Molnar… the first Dr. to actually LISTEN to me! He NEVER treated me like a drug addict or a depressed housewife.He said “the first thing we have to do is to get you comfortable. THere’s no sense in you living another moment in pain with all of the potential treatments out there”. Back then we started with a low dose of Neurontin and some Oxycontin. ANd for the first time in years, I had some relief!! My family couldn’t belive the difference in my moods and attitudes. No more thoughts of suicide! I actually saw HOPE of actually “LIVING” life rather than just coasting along beside it! Next, Dr. M ordered a whole series of MRI’s and exrays and blood work.

Over the course of the next few years a lot would happen. In ’93 my left leg was amputated after more than 20 unsuccessful surgeries to scrape out a severe infection in the ankle bone (a.k.a.”osteomylitis”)… which the docs felt was a large source of my pain. The day after that surgery, the pathologist found that there was also a high level of Melanoma within the ankle. CANCER had been in there for God knows how long… and no one checked until Dr. M! A long stretch of rehab and treatments followed that and for a time, the pain level did improve. Bbut gradually it returned… and with a real vengeance! The Neurontin and Oxy. were like candy. So the Neurontin was increased tremendously and we added MS Contin, Baclofen, Wellbutrin and some M.S.I.R. (morphine sulphate immediate release). THe pain became bearable as long as I did not overdo it in any way. ANY slight change to my days can cause a terrible PAIN ATTACK which means 2-3 days in bed. A new series of MRI’s and exrays diagnosed more problems in ’99. As a result of the Spina Bifida, scar tissue formed around my spinal chord. This is called “Tethered Chord Syndrome”. Another common complication of Spina Bifida in adults is “Syringomyelia” which means that there are cysts…known as “Syrinx”… that form within the chord and fill with fluid. As they expand, they damage any nerves in their path…which then affects various body parts and functions. In Jan.’99 I had 2 surgeries on my lower back to attempt to decompress or release the tethered chord and to drain the cysts. The surgery was a disaster, infection almost killed me, and I spent 6 months in a rehab. facility. I did regain my ability to walk short distances there.

Now, it’s 2004. My spinal chord has “re-tethered” itself even worse than the first time. It is pulling my chord down much further into the spinal canal than it should be. I also have all new cysts within the chord as well as serious damage to the spine itself. 2 places in my neck and several in my lower spine are collapsing and crushing the chord. My pain level is barely managed with HIGH doses of 2 kinds of morphine as well as several other drugs. If my daily activities consist of anything more strenous than washing a few dishes or folding some laundry, then I have uncontrollable pain. Doctor’s in my hometown of Cincinnati told me there was NO ONE there that could offer me anything else. THey referred me to Cleveland Clinic and those docs there said they didn’t feel surgery was an option…wasn’t a high chance of success, but HIGH for complications, plus my risk of infection, etc. THey felt my only HOPE is intense rehab. to retain what mobility I have left for as long as I can. We recently moved to Phoenix where the Barrow Neurological Institute is located. I’m told that they are “The Best” there and so I have an upcoming appointment with them.

Depression is a constant battle these days. My life has changed SO drastically in the past few years! I’ve lost both my parents at the early age of 55, my health has declined, I lost a wonderful job because of it, I’m loosing my ability to walk, some of the use of my arms/hands, I have difficulty swallowing, I have CONSTANT urinary tract infections that make me very sick, AND my husband and I are both suffering from “Empty Nest Syndrome”!! So I believe that so much change can cause depression issues.

I can’t begin to tell you how much help it is to know there are others out there who “Get This”. I think you have to be a Chronic Pain Suffered OR love someone who is, in order to really grasp how all-consuming life with pain can be.

Sometimes for me, when the pain is really bad… it’s as if PAIN is all I can feel, hear, see, smell or taste. It’s like a very loud, constant SCREAM throughout my body. I know that my PAIN has had a negative impact on my ability to be a good mother, wife, daughter, sister and friend. THe PAIN rules your life. The PAIN makes the decisions of whether or not you go to the family picnic or the grocery store. The PAIN decides whether or not you take your kids to the amusement park or go to their softball game. The PAIN decides if you will sleep tonight or not… and for me, my pain even affects my appetite and ability to eat.

I AM TRYING to learn to rise above the pain… to take back the control in my life. I don’t like depending on pain meds. to keep me mobile… but if that’s what it takes to keep from just giving up and being in bed all the time, then I’ll do it. I’ve recently been thinking about the fact that PAIN “stold” a large portion of my life from me. Now, I have the chance for a whole new start… a new city, my girls have families of their own and live in 3 states, and for the first time in 23 yrs. my husband and I are ‘on our own” again. We should enjoy this time in our lives. My husband DESERVES to enjoy this time in his life!

So I’m trying some things I’ve never done before…some things I’ve wanted to do for years but didn’t have the courage. I’m going to be getting involved in a rehab. program that involves some real dedication and exercise in order to rebuild some of my muscles that have become so weak. I’m getting involved in some community projects. AND…something just FOR ME… I have (finally) found the nerve to enroll in some writing and literature courses. I’ve been writing since I was a child, I’ve always loved writing AND reading! I’ve been working on a few manuscripts for a few years and I have several other projects in mind. I’m even going to be taking an Art class!

All of these things are ALL NEW for me.Pain has tried lately to convince me that I’m fooling myself if I think I can “pull this off”… I’m not “able” to do these things. But that makes me more determined to PROVE PAIN WRONG!!

Thanks SO much to those of you who have “stuck it out” and actually read this thing to the end! ;o) It has been a bit of “therapy” for me to share this with you.

Thanks to all of you who contribute to make this site a “safe haven” to pain sufferers everywhere.