Low Dose Naltrexone

Wonder Drug? I Wonder. I Wish.

Naltrexone is an opioid antagonist used for treating addiction to alcohol and opiates.  The doses used for this type of treatment are around 50 mg once daily.  Reason would tell you that something that counteracts opiate pain medication would also be something that does not help pain.

There are some doctors now prescribing this in a very low dose to treat a variety of disorders (off label - meaning it is not the reason this drug has FDA approval).  The dose recommended is between 1.5 mg and  4.5 mg per day.  The website that touts this drug states that this must be compounded at a compounding pharmacy (where they build the pill from other components in the strength desired) and must be prescribed by a physician.  It seems to be fairly inexpensive and at that very low dose hopefully side effects would be minimal.

I learned of it through a discussion group I belong to.  One of the ladies who has a very destructive autoimmune disorder is giving low dose naltrexone (LDN) a try.  I don't know her success yet with it as I am not sure even how long she has been taking it - maybe just a few months.  I looked it up and read about it and am intrigued, though skeptical.

There are anecdotal claims and a few scientific studies that LDN can stop the progression of certain cancers, help with multiple sclerosis mood disorders and pain, help with fibromyalgia pain, stops the inflammation in Crohn's disease, and works to stop the immune response of autoimmune disorders.  Instead of working by suppressing the immune system (as prednisone, dexamethasone, prednisolone and cyclosporine do) it seems to work by boosting the immune system.

How does this work to decrease pain?  According to the authors of the website low dose naltrexone taken before bedtime produces "a prolonged up-regulation of vital elements of the immune system by causing an increase in endorphin and enkephalin production."  Endorphins are the body's natural opiates - pain killers manufactured by your body.  Enkephalin is a specific type of endorphin that is sensitive to certain types of stimuli that might damage your body.  Enkephalin is also thought to be part of the cascade that creates an autoimmune response.

Since I rarely am asleep in the middle of the night, I can see how my body might be missing some nature endorphins and enkephalins.  Maybe this is what my PCP means when he says lack of sleep creates a build up that increases pain?

In treating cancer some think that in addition to increasing endorphin and enkephalin LDN targets the opioid receptors on certain types of cancers and thus somehow inhibits reproduction.  My interest in this is because the type of cancer I had (endometrial cancer) is hard to treat with a recurrence. I am keeping LDN as a treatment possibility in case my cancer ever decides to return.  I believe in using conventional treatments, but this would be an option you could take with the conventional treatment. 

Do I believe all the hype?  Not really.  The studies done are just for small cohorts under controlled conditions.  Most of the evidence is from patient stories and physician use which of course are not a controlled scientific blind study. The studies seem to all agree there is no harm from taking LDN and that if LDN is taken concurrently with opioids it seems to boost the opioid effect instead of suppressing it.  The one study on fibromyalgia said a significant gain of 30% reduction in pain was found.  I guess that is another disease where people are not able to have restful sleep!  I do find it hard to believe that one drug treats all these disparate diseases with the same mechanism, but that's the logical me talking!

Will I ever try it?  Definitely if my cancer returns (knock on wood!) because I won't have anything to lose. If my neuropathic pain and The Legs get worse or The Headache or The Belly pain are not controlled I might give it a whirl. I've tried a bunch of other stuff that didn't work so why not this?   Just more money down the drain!  After all, I bought HeadOn and applied it directly to my forehead - directly to my forehead - directly to my forehead - in a desperate attempt to quell The Headache!

Below find a link to a blog entry skeptical of most of the claims at the low dose naltrexone website.  Some points made agree with my conclusion that there are not enough real scientific studies to sort it out yet.

LDN - Medical Revolution or Psuedoscience?

Articles from peer reviewed journals concerning low dose naltrexone - most of these are for very small studies or a single case.

LDN and Pancreatic Cancer - a case study
DN and IL2 in Metastic Cancer Treatment
LDN and Crohn's Disease
LDN and Multiple Sclerosis 2010 (fairly lukewarm review)
LDN and untreatable solid tumors -2002- a study
LDN and fibromyalgia 2009 study (favorable)

September: National Gynecological Cancer Month

A Cautionary Tale - But Maybe TMI??

In 2004 I was diagnosed by endometrial biopsy with complex endometrial hyperplasia, probable endometrial cancer.  I was just a month shy of my 45th birthday.  I scheduled a hysterectomy as quickly as possible, not knowing when I went into surgery if the cancer was too far advanced for surgery or I would come out with a hysterectomy and early stage cancer.

Endometrial cancer is the fourth most common cancer in women.  It is over 90% curable if caught in the earliest stages. There is no easy test to see if you have it.  My pap tests always came back OK.  Most ladies that are diagnosed are past menopause so symptoms like unusual uterine bleeding are more obvious, but a small portion are like I was, still fertile.  This is my story of how I was diagnosed and how I should have listened to what my body was telling me rather than a physician.  Do NOT do what I did and put off fully investigating female health issues.

In 2000 I began having symptoms.  I had them checked out, since almost all the women in my mother's generation of her famiy had hysterectomies and I did not know what a normal menopause was like. I thought I might be going through premature menopause.  I was working more than full time as a manager, and finishing a college degree so I was spending a lot of time at work or doing homework.  In 2002 I decided that the corporate climate was not for me and decided to move companies.  Before looking for another position and quitting my very lucrative job with great insurance benefits I again had everything checked out because I didn't want a new employer to have the burden of someone who was going to right away have a hysterectomy.   I had an ultrasound of my uterus, a CT scan of my abdomen/pelvis, and an IVP of my kidneys. Again I was told not to worry, everything was just fine, I didn't need a hysterectomy. My gynecologist told me I just had fibroid tumors, don't come back for two years.  Relieved I found a new job and changed career paths from giant MegaCorp Insurance Company to the small software firm I work for now.

In 2003 I started having urinary tract infections that wouldn't clear up.  My new PCP (for my new insurance) sent me to a urologist for a cystogram.  I was told there were structural problems.  I agreed, saying it feels like my right kidney is being pulled down and my bladder was being stomped on.  Something did not feel right.  The urologist pooh poohed this and said I was just overweight and I needed a "bladder sling" operation to hold up my bladder.  Yes, I was overweight and gaining more and more in my lower abdomen as if I was pregnant, yet I knew I was not pregnant.  I was eating less and less trying to control the weight and I started feeling really tired.  I started having clear mucous like discharge between periods and the bleeding was getting heavier.  I started getting a round face, very puffy, and my legs and feet started swelling so I couldn't tell I had calves and ankles.  I saw myself in a window reflection once and didn't even recognize me.  I refused to have the bladder operation - it didn't seem right for some reason.

In the December of 2003 I was traveling for work and was actually trying to run across the Atlanta airport to catch another flight carrying my laptop case.  Halfway across the airport I started to bleed profusely even though it was not time for my period.  The gynecologist in 2002 told me that I might have some trouble like this because of perimenopause.  I had to stop, buy something to wear, change clothes and missed my flight - it was another 10 hours of misery until I got home.  It was so bad I debated about going to an Atlanta hospital to be checked out, but decided to make an apppointment when I got home.

Because of my prior diagnosis of fibroids and perimenopause, and the holiday season, I did not get an appointment until February 2004 to see a new gynecologist because I refused to see the old one - I didn't like the fact that he kept telling me nothing was wrong.  My abdomen was getting larger, the puffiness was worse, I was exhausted, and the bleeding now happened if I picked up anything, or moved too quickly.  I should have been more concerned, but I was still thinking it's just fibroids. 

When I had my appointment with the new gynecologist he gave me a half hour lecture about how I was going to leave with a prescription for progestin, and then he did the pelvic exam.  I could see by his face something was not right.  He then immediately perfomed an endometrial biopsy.  I had no pain medication before hand so this was very painful.  His face changed when he was looking and trying to get a biopsy sample and then I knew something was very wrong.  I was sent immediately for a transvaginal ultrasound and the ultrasound tech's face was not right either.  You can tell when someone is trying to "manage" their facial expressions.  I met with the gynecologist and was told I needed to come back in two weeks but I would get the biopsy results in a couple of days.  I asked about the progestin prescription and was told we were going to wait on the biopsy.  I also was scheduled for another CT scan of the abdomen. Not good.

My biopsy came back as complex endometrial hyperplasia with atypia, possible carcinoma in situ.  This can be histologically early cancer, just not a large enough sample to tell, or it could be precancerous.  I scheduled the hysterectomy ASAP but was told I might just get a D&C for biopsy purposes and have to have radiation and chemo before the operation.  We discussed whether the ovaries and fallopian tubes should be removed, and I needed no convincing - I wasn't going through this type of procedure twice so I was scheduled for a TAH BSO - Total abdomenal hysterectomy with bilateral salpingal oopherectomy.

On March 4th 2004 I went in for my hysterectomy.  I remember waking up not knowing if I had actually had a hysterectomy or not.  I remember my sister telling me I had cancer, and the next morning the gynecologist telling me I had the full hysterectomy.  My uterus with the tumor (and one small fibroid) was the size of a football! I asked him if he needed a come-along, a crow bar and a tow truck to pry that sucker out of there. I guess I like to grow my cancers big like prize pumpkins.  After removal he said the cancer seemed more advanced than it appeared during the D & C, but he would wait until the pathology came back to stage it.  The ureter from my right kidney to my bladder was  being pushed away by the size of the tumor and was trying to pull my bladder up at the same time the weight of the tumor was pushing my bladder down.  No wonder it hurt!

Some cancers are staged by the surgeon, and some cancers are always staged by the pathology.  My surgeon staged my cancer as stage IIB uterine cancer because the cancer had superficially started to advance into the cervical neck however the pathologist staged it as stage IC, grade 2 endometrial cancer, adenocarcinoma .  The surgeon did not remove any lymph nodes since he knew that I would need radiation therapy regardless, but that makes the pathology incomplete (no nodes taken).  The treatment is the same for both stages, so I guess it doesn't make any difference, but I use the pathology staging because the prognosis is better. The cancer had invaded into the myometrium approximately 75% through from the endometrium invading the vascular and lymph layers of the uterus.  I received 25 treatments of external beam radiation therapy to my abdomen, and 3 high dose rate vaginal brachytherapy treatments.  I have been cancer free since but have complications from the HDR brachytherapy.

If I had been more agressive with questioning my first gynecologist, my old PCP, and the urologist I might have been able to have the hysterectomy way before the cancer got the size of a football.  I pulled all my imaging reports from the past after the diagnosis of cancer, and found that the radiologists who read them years before my hysterectomy were suggesting that I needed further investigation, possible biopsies due to abnormalities, and not one mentioned a fibroid tumor, just a suspicious mass at the top of the uterus and a grossly enlarged uterus with a very thickened endometrial lining. 

Why didn't my physicians interpret the results the same way the radiologists did?  I don't know but I pull all my medical records on a regular basis now, and read the results myself.   The gynecologist who twice told me there was nothing wrong is no longer practicing (thank heaven).  The old PCP I had is working as a college physician giving out flu shots and birth control pills to students - appropriate for her skillsets I think.  The urologist who told me I was just over weight and needed a bladder sling apologized and admitted he had made an error in judgement.  I no longer see him. 

So don't do as I did and blindly trust professionals to do their jobs correctly.  Don't do as I did and ignore your body and obvious symptoms.  Don't do as I did and delay getting an appointment with a gynecologist if you feel your problems need quick attention. If it is possible find out what problems were found in the female lineage of your family.  There was a strong history of endometrial cancer in my mother's very large family that goes back 3 generations, and also colon cancer - these two types of cancer can be related, but I had never asked.  Please check out the NCI cancer website concerning women's cancers at http://www.cancer.gov/ and familiarize yourself with what symptoms to look for and what preventative steps to take and what testing needs to be done in order to live a longer healthier life.

Sixth Anniversary

March 2004 - March 2010

Today I bought myself a little gift, which I do every March in celebration of my continued being. This is the anniversary week of my endometrial cancer diagnosis.  I am now six years cancer free.  Yeah!!!

It was early March 2004 when I had a hysterectomy, 2 weeks after an endometrial biopsy showed endometrial hyperplasia, probable endometrial cancer.  I had a total abdominal hysterectomy with bilateral salpingo-oopherectomy (TAH BSO) which means removal of the uterus, cervix, fallopian tubes, and ovaries.  The pathological staging came back as Stage IC, grade 2 endometrial cancer and the surgeon's staging was Stage IIB, grade 2 probable cancer of the uterine corpus [deeper than the endometrial layer]- the treatment was the same, so not sure if the staging really mattered.  The cancer had spread since the biopsy into the cervix area which is why the surgeon staged it as IIB, but the path report said it was just an external spread from the biopsy path.  I prefer the IC designation since the probability of a cure is quite a bit higher than IIB.

The surgeon said the cancer was about the size of a football, and was pushing downward on my bladder.  I had had symptoms for quite a while, but two years earlier had seen a gynecologist who told me I was just perimenopausal and didn't even need to have a checkup for a couple of years.  He was a real winner, not practicing anymore thank heavens!  I knew something was wrong, but kept telling myself  "It's just perimenopause!"  Sometimes you just need to listen to your inner voice.  I guess I just wanted a large blue ribbon size cancer! 

The radiation therapy was to ensure no recurrance, and it seems to have worked for that, no matter what other problems I have.  My radiation oncologist sent me an article this week on "lumbosacral plexopathy from radiation therapy" - maybe he has been thinking about my problems since the radiation dosing issues have come forward.  Lumbosacral plexopathy as described in the article is a rare side effect from high dose rate brachytherapy, where the nerve nexus in the pelvic region receives too much radiation for whatever reason and is damaged.  For some it means that eventually they lose the ability to walk.  My ability to walk long distances and to stand are limited now, sorta hoping it would stop at this point and not get any worse.  This is the first time I have gotten some honesty about what is happening from this practice.

Endometrial cancer is one of the most common women's cancers in the world, and is very curable if caught in the early stages.  Here is a list of some of the risk factors (I had quite a few):

• Diabetes
• Estrogen replacement therapy without the use of progesterone
• History of endometrial polyps or other benign growths of the uterine lining
• Infertility (inability to become pregnant)
• Tamoxifen, a drug for breast cancer treatment
• Never being pregnant
• Obesity
• Starting menstruation at an early age (before age 12)
• Starting menopause after age 50
• Colon or breast cancer
• Hypertension
• Polycystic ovarian disease
• Family history of endometrial cancer

If you have any of these risk factors, and have abnormal menstrual bleeding and/or a clear mucousy discharge, please schedule a doctor appointment with a competent gynecologist soon.  There are no real screening tests like the Pap smear for cervical cancer.  Every Pap test I have had came back normal, but the endometrial biopsy and vaginal ultrasound were the diagnostic tools that helped determine I had cancer. I had several years of problems that if my physicians had been more diligent (the cancer showed up on a ultrasound from 2001 but I was told it was a fibroid tumor) or if I had been more proactive might have been the warning signs that something needed to be done.

The Headache is very active this evening, with pain spikes driving through my temple.  I have had the stimulator turned down today, as the head was getting over stimulated so I guess I am just paying the price now.

I've Consulted the Magic 8 Ball

MRI Jitters

My doctor had appealed Anthem's decision to not authorize a PET scan, I followed up this week with Anthem since the appeal was mailed to them April 2nd. The appeal is nowhere to be found. I had a denial of an appeal letter sent to me, but it could have been from the peer to peer review. I left voice mail with the appeal department and no-one ever got back with me. I talked to customer service and they didn't know what to do. I spoke with radiology precertification and they couldn't find it. No one at Anthem could tell me what the denial of appeal letter was denying - the peer to peer appeal, or the doctor's appeal. I think the appeal got sucked down into that giant black hole where all unpaid claims go.

I then called my oncologist because my GI doc had already ordered and completed an abdominal MRI because of the pancreatitis. I was hoping I wouldn't have to have any more testing and they could use this instead of a PET scan. They would use it, but I then needed to have a pelvis scan. I had that done yesterday. I had a tremendous headache but I got my brother to go with me to the MRI center so someone could drive.

Got the pelvic MRI done, and now the MRI center has called me asking me to come in first thing Monday (like 6:30 AM) to have some additional studies done by the request of the radiologist. When you have had cancer just having the radiologist need extra studies is anxiety provoking. I am trying to not panic (Serenity Now!) and have consulted the Magic 8 Ball on the internet, and the answer was encouraging.

The Headache is fairly bad today. I delayed taking some medication so I could make sure I could fill in at work for a gal who is off today. I'm paying for that delay this evening. I am sure that hearing from the MRI folks this evening is helping The Headache along. I threw up twice at work and there is nothing worse than puking in a toilet that your co-workers asses have been sitting on. That alone makes me nauseous thinking about it - and I'm full of phenergan!

The Belly is complaining also. It didn't like emptying in the work toilet either!

I am resolving not to obsess about the new studies at the MRI center. What will be will be, and what is already is, and worrying about things that may never happen is counter productive.

In one of the internet groups I belong to someone with the same headache type as I have said a combination of drugs is finally working for her - time release morphine and baclofen and parafon forte. She said her headache specialist thought that the baclofen and parafon forte would change the brain reaction to pain (sorta short circuit it) and it seems to be doing the job. She is young and has had this headache for years and years. I'm so happy she found some combination to help the pain!

Pet Scan Anxiety

Tests Tests yet More Tests

Had an appointment today with the gynecological oncology group (boy that's a mouthful!) as a consult from my doctor appointment last week. I am now scheduled for a PET scan next Tuesday to check to make sure my pain is not from a cancer recurrance. If it is I will be surprised, but I think anyone who has had cancer dreads each time you get rechecked or have more tests run because it can mean the undying cells have reappeared. I am considered at fairly high risk for distant metastases because of the depth of the cancer invasion (into the deeper vascular/lymphatic tissue of the uterus) and the histology of the cells. I am dreading the scan somewhat because it is one of those types where you have to lay still for at least an hour and a half, and if The Headache makes itself known that day it will be very difficult.

Other news from the gyno onco which was no surprise to me - they stated if the health issues I am having with neuropathic pain and dysfunction are because of chronic radiation damage there is nothing anyone can do, and it will just progress. I do show more signs of radiation changes in other tissues so that seems to concur with nerve damage due to radiation.

Up side if the problems are due to recurrent cancer there are probably steps to take, down side if the problems are not due to recurrent cancer there is nothing I can do. Up side if the problems are due to radiation and not cancer I will most probably be cancer free for the next five years also, then declared cured!! Down side if the problems are not due to radiation and are recurrent cancer there are very few treatment options for recurrent endometrial cancer and they have limited efficacy.

Having to take much trammadol this evening because of course poking around on me started the nerve pain to increase again. You tell a doctor it hurts somewhere and then they poke you there and of course it hurts, and then they say I'm sorry - but no, they are not. They deliberately poke you in your sore spot(s) just to see if it really hurts.

My blood pressure is still elevated due to pain. At this point I can't tell if it is from the hemicrania continua (which pitched a fit this afternoon) or the pelvic pain or both. Most probably both. There have just been a few times (after injections of major pain killers) this last year and a half where my BP has been normal. One neurologist said he could see changes starting in the vascular part of my eyes from elevated BP. Just one more broken part in the junk heap that is my body...

The Belly and The Headache are vying for my attention this evening. I had the shakes from not eating so had to feed The Belly and it was not grateful. The burning ouchiness is being helped by the trammadol I took for the pelvic pain, so a benefit there! The Headache started surging this morning with big lumps of pain, so I only worked a few hours today. I updated some records for a client so they were productive hours, but I went home early and just crashed on the couch in the living room.

I think some of the improvement I have been having with The Headache is from some advice I got from a fellow Hemicrania Continua sufferer: sleeping sitting up and sleeping on the side The Headache is on. I don't do it every night, and I don't sleep entirely sitting up, but in a semi reclining position, but I do believe it has been of benefit. Thank heavens I have a memory foam couch that is very comfortable.

Exam Gown Beauty

5 Years Post Cancer Post Hysterectomy

Had my annual check up today, which included putting on a beautiful (not) exam gown. I don't know who designs those things but my elbows aren't double jointed and I never can get the middle back tied.

My doctor suggested that I see the gynocological oncologist again for the post-radiation issues I have, which are probably nerve damage from the HDR brachytherapy and possibly the pelvic radiation. He said that the nerve problems (if due to radiation) would be progressive, and the oncologist might have more suggestions on how to treat what probably be a life long problem. The nerve damage creates quite a bit of pain when standing or walking for long periods of time. With The Headache it makes exercising very difficult for me.

I went to work today after my MD appointment, but only lasted a couple of hours. The Headache kept pounding away and all I could think of was The Headache and I didn't want to draw pay for doing nothing which was all I was capable of.

I have problems driving when The Headache tries to take control. For some reason I get disoriented, miss turn offs, go the wrong direction, etc. This afternoon it was an issue, but I got home eventually. I'm having a hard time writing this evening/morning because I can't carry a thought through to a conclusion. I've been at this for about 3 hours to write just these few paragraphs. I stared at 11 PM and it now is almost 2 in the morning.

Wow, I just remembered I was going to take a long bath to get my leg and lower back pain to let up. I had turned off the water to go and write this - allowing the water to cool down a little - I'll bet its too cold now! Duh....

Heading Down the Headache Highway

Bumpy Road Ahead!

The Headache is worse tonight, has been bumping along since late afternoon. It's 10 PM and I'm not sure how much sleep I will have tonight. I've been drinking white tea all day, the mild caffeine buzz has made me so happy, happy, happy, quick quick quick, but hasn't helped The Headache at all.

For years I could stoke up on the caffeine and delay a migraine for several days. I never could stop the migraine, but I could almost always push it from say 10:am in the morning to 8:oo pm in the evening, and sometimes from a Wednesday where I would miss work to a Saturday. Naproxen and caffeine - worked as well as any prescription medication I was given. So at least once a month I try to caffeine myself up with this durn hemicrania continua, and it does nothing for the headache. Not sure why I keep trying, but when The Headache starts lumpin' along making its presence felt I think I just hope it is the old migraine problem coming back.

Had fun at work today, actually felt marginally useful until mid-afternoon when The Headace upped the ante. I got absorbed in a project and forgot to take my indomethacin directly at noon. I think that riled it a little bit more. I had a great long phone conversation with my sister tonight which distracted me a great deal, but the thinker switch is set to OFF so I hope I made sense.

My left eye has been poking me with the icepick of pain, which has now turned into the throbbing temple of doom. Sounds like an Indiana Jones movie!! I've had a pretty good week so far, and I want it to continue and for The Headache to back down. Maybe I'll take some good old Benedryl and phenergan to see if The Headache will disappear during the night.

I have some more pancreatic enzymes sitting at the pharmacy waiting to be picked up to help with The Belly. I have a great GI doc that evens calls you personally in the evening if you are having issues. His staff is great too.

I have a cancer checkup on Friday. Hoping for the same great results I have had in the past. This is my fifth year post cancer (Endometrial cancer, Stage IC grade 2)...half way to where I can say I'm cured. Aflac will actually let me purchase cancer insurance after 5 years because they consider that cancer free. Yeah!!! I will only have to have one appointment a year instead of one every six months after August. It's nerve wracking: last year the radiology oncology nurse told me I was one of the few patients she had that had gone so many years without a recurrance. My cancer had invaded the lymphatic and blood vessel space so I was a fairly high risk for distant spread. None seen so far! Great surgeon, great radiation team.

Until I was 40 I did pretty good healthwise. I only saw a doctor a couple of times a year - maybe for a sore throat or an annual checkup. That's when my warranty expired - 40. Heading to the big 50 this year - hoping for a better 10 years healthwise than the last. I would like to quit thinking about it. Quit having appointment after appointment. Quit having to go to ER departments. Quit having to go to urgent care facilities. Be normal for a while....

I think I'm just whiney this evening because of The Headache. Going on a self-pity binge. Gotta head it off at the pass!!!! I only allow myself two days of self pity a year and I don't want to waste a day of good pity party time so early in the first quarter!!!