advocacy

Advocacy

Your quest for personal advocacy will be a humbling one.  I discovered that the people charged with my care weren’t taking care of me. While fighting the nightmares pounding at my door I planted my feet on the floor and stood up for myself.

To be your own personal advocate you must first realize that the only person who is going to have your best interests in mind is you.  Once you realize this, then you will have the foundation to reclaim your life.  With this you will build the walls of your new home.  Finally you will construct the roof by enforcing your boundaries, taking control of your life.

This road is a difficult one, but necessary.  If you desire to live your life by your terms, then take charge, choose who you want to be and become that person. Masters of personal advocacy made the willful choice to become who they are. Will you do what it takes to become who you want to be?

Nioxin vs Monat vs Rogaine

Nioxon vs Monat vs Rogaine

While perusing the land of Facebook I was drawn to an image (shown below) illustrating the advantages of one product over two others. With my interest piqued I spent the better part of an evening researching it’s claims. I believe we all fall victim to the whirlwind of information flashed before our eyes. There is so much knowledge at our fingers tips it can be challenging to decipher fact from fiction.

Errors and Clarifications

The first error the author made was when they classified Nioxin, a company as a product. I am assuming the author intended to compare Nioxin’s Hair Regrowth Treatment for Men and Rogaine to the Monat product: Intense Repair Treatment.

The second error was when it compared the three products unfairly. No attempt was made to compare each item in a like manner, essentially the author was comparing apples to oranges.

The next error was that the active and inactive ingredients were inaccurately listed. If you consult the following data you will see that Acetamide MEA, Cocamide MEA, PEG-150 distearate, Tocopherol, Cocamidopropyl betaine, Diazolidinyl, Sodium Laureth sulfate, Tetrasodium EDTA, Methylparaben PEG-150 distearate and Propylparaben are not on the ingredient list for Nioxin’s Hair Regrowth Treatment.
The active ingredient of Nioxin’s Hair Regrowth Treatment for Men is 5% Minoxidil. The inactive ingredients are Alcohol, Propylene Glycol and Purified Water. [3]

The active ingredient of Rogaine is Minoxidil 5%. The inactive ingredients of Rogaine are butane, butylated hydroxytoluene, cetyl alcohol, citric acid, glycerin, isobutane, lactic acid, polysorbate 60, propane, purified water, SD alcohol 40-B, stearyl alcohol.

The product I assume the author wishes to compare from Monat is their Intense Repair Treatment, which claims to be a patented biometric peptide formula, that has “higher proven results than other leading hair loss brands” and its “clinical results prove significant results in just 90 days” [1]

The Intense Repair Treatment does not use the terms active and inactive ingredients, instead the terms ‘key ingredient’ and ‘ingredients’ are used. The key ingredient is Capixyl [1]. However on the main Monat website this ingredient is not mentioned. On the main Monat website it states that the product’s ingredients are water, butylene glycol, acetyl tetrapeptide-3, Trifolium Pratense Flower Extract, hydrolyzed wheat protein, dextran, xanthan gum, pvp, cocamidopropyl-pg-dimonium, chloride, benzyl alcohol, dehydroacetic acid, fragrance.

According to another source the ingredient list of Capixyl is: Butylene Glycol, water, Dextran, Acetyl Tetrapeptide-3, Trifolium Pratense Flower Extract which matches up with most of the ingredients within the Intense Repair Treatment. [2]

How are the terms key, active and inactive ingredients defined?
According to the World Health Organization the term active ingredient is defined as:

“active pharmaceutical ingredient (API) Any substance or combination of substances used in a finished pharmaceutical product (FPP), intended to furnish pharmacological activity or to otherwise have direct effect in the diagnosis, cure, mitigation, treatment or prevention of disease, or to have direct effect in restoring, correcting or modifying physiological functions in human beings.”

An inactive ingredient or vehicle is an inactive substance mixed with an active ingredient to give bulk to a medicine. [4]

I have found no pharmaceutical definitions for key ingredients.

What do these three products do?

Nioxin Hair Regrowth Treatment for men and Rogaine have identical active ingredients.
Active Ingredient: Minoxidil 5%.

“Minoxidil applied to the scalp is used to stimulate hair growth in adult men and women with a certain type of baldness. The exact way that this medicine works is not known. If hair growth is going to occur with the use of minoxidil, it usually occurs after the medicine has been used for several months and lasts only as long as the medicine continues to be used. Hair loss will begin again within a few months after minoxidil treatment is stopped. In the U.S., this medicine is available without a prescription.” [5]

Monat Intense Repair Treatment
Key Ingredient: Capixyl (not listed as an active ingredient, see above)

There is no information on Pubmed about Capixyl. [6]

There appears to be no evidence-based data to suggest Capixyl or the Monat Intense Repair Treatment has any affect on the regrowth of hair.

Conclussion

According to my research Minoxidil is the only drug proven to regrow hair. Monat’s claim that Capixyl (or Monat’s Intense Repair Treatment) can regrow hair is anecdotal at best.

[1] “Intense Repair Treatment” Monat Intense Repair Treatment. Hair Canada. Web. 8 December 2017. <
[2] “Capixyl TM” Propspector. UL. Web. 8 December 2017 < https://www.ulprospector.com/en/na/PersonalCare/Detail/4501/191081/Capixyl>
[3] ”Nioxin Hair Regrowth Treatment for Men” JC Penney. Web. 8 December 2017. < http://haircanada.net/index.php/monat-products/intense-repair-treatment-monat/>
[4] “Defintion of Active Pharmaceutical Ingredient” WHO. World Health Organization, July 2011. Web. 8 December 2017. <https://www.jcpenney.com/p/nioxin-hair-regrowth-treatment-for-men-30-day-supply-2-oz/pp5005120081?pTmplType=regular&rrec=true&rrplacementtype=product1_rr> http://www.who.int/medicines/areas/quality_safety/quality_assurance/DefinitionAPI-QAS11-426Rev1-08082011.pdf>.
[5] “Minoxidil (on the skin)” Minoxidil. NCBI. 1 November 2017. Web. 8 December 2017. < https://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0011238/?report=details>
[6] “No result found for Capixl” < https://www.ncbi.nlm.nih.gov/search/?term=Capixyl>

Hope Lodge

Hope Lodge

Hope Lodge

Hope Lodge

We stayed at the Hope Lodge in Kenner.  Had it not been for this place the trip to New Orleans would have been impossible.  The staff was friendly and the environment was inviting, there was a huge kitchen and an even larger dining room.  They give you plenty of space to keep your cold or dry groceries. Additionally, fresh food was put out every day for your eating convenience.

The rooms were spacious, clean and well kept.  This place was easily more comfortable than most of the hotels I’ve stayed in.  We stayed on the second level, I tell you what, that room’s AC worked tremendously well.  Walking into it was akin to leaving the sweltering humidity into a dry winter wonderland.  It made a great night of cuddles, because it was way too cold to do otherwise.  Of course, we could have just turned down the AC, but where’s the fun in that?

Hope Lodge

Online there seems to be an abundance of zebras, but the connection isn’t the same as meeting another in real life.  When you meet someone with cancer a social bridge is automatically built.  A different bond is born when you find someone feeds and houses the same kind of monster you do.

On one of the last days at the Hope Lodge I met another who fought against the webbed chains of Carcinoid NETs.  She was a strong woman with a powerful story, her husband was equally delightful and it was heartwarming to know these wonderful people had each other.

We discovered we walked through many of the same sticky spider webs of Neuroendocrine cancer.  Online we see it time and time again, but we don’t realize how often our stories repeat through the lives of others until we discover others who have walked our same road.

Links

Personal Advocacy

Confirmed

Confirmed

I mentioned the only reason I could embrace the moment was because the hospital confirmed they received all my medical records.  So, what does a confirmation mean if the doctor never looks at what you sent them?  The answer is nothing.

Unfortunately, personal advocacy means you must continuously put yourself center stage.  Effectively you must be the most annoying person in the world if you want to avoid being left behind.

It’s pretty scary.

A more detailed Conversation

So, what medical information did I gain from this?  Not much.

While in New Orleans I spent a great deal of time laying inside of fancy, expensive devices.  I drank interesting fluids after being injected with all sorts of mysterious serums.  It was great to get these tests done, if I were smarter, stronger, perhaps if I had more wisdom I would’ve asked why couldn’t I do these tests back in Saint Louis.

While in New Orleans I was only able to read the results of one scan.  The report indicated that there was something described as a mass effect in my liver.  Specifically, it read: “Right lung has been resected and the right thoracic space is largely filled by liver and a trace amount of fluid at the right lung apex. The liver produces some moderate mass effect on the right side of the heart.”

When I read it on the report I felt anxious, perhaps it meant nothing, perhaps it meant something.  Any news feels like bad news, that’s the nature of Hope the Mouse.  I looked up what mass effect was, mostly it brought up video game stuff and references to cranial tumors.  That wasn’t a fun thing to read, but instead of worrying about it, I kissed my girlfriend and returned to the fun adventure of exploring New Orleans.

Talking with the Specialist

When I met with the doctor I asked him if he had reviewed my scans and tests.  He said no.  I asked him if he would like to see my medical records and the scans that I brought and he said yes.  This was the first time that he read over my medical history.

Once he opened the file I asked him if my liver had moved up into my thoracic cavity and he quickly said no.  Then I asked him what a mass effect was, he didn’t respond so I pressed the question again, this time handing him the report from the scan I got in New Orleans.

He took the paper and then continued to stare at the Ga 68 scan on the computer screen.  Many moments were spent as he complained about the quality of the scan, saying the file was organized in a way he wasn’t used to.

I asked him again what the mass effect of my liver might be.  In response, he said he thought that it was most likely my heart pressing up against my liver. He went onto say that there was a chance I might have to have surgery in the future if it became a problem.

The most important piece of information he gave me was to have my port removed.

Conclusion

What was the medical value of this journey?  I need to have my port removed.  There is a mass effect in my liver.  I have a surgical screw in my hip.  I learned that if you want to become your own personal advocate, everything has to be confirmed.

Links

Personal Advocacy Resources

Big Pile of Disappointment

Was it really a big Pile of Disappointment?

Last time I spoke a lot about how my trip to see the NET specialist was a big pile of disappointment.  I hoped that with that doctor it would be a moment I could ask him questions only a specialist could answer.  Unfortunately, I discovered he hadn’t reviewed my records and so my appointment with him was just a few notches above worthless.

With that said this was supposed to be the visit, and in certain ways it was.  The value of this visit was that I learned more about personal advocacy.  In the conclusion, I said: “Seeing a specialist isn’t enough.  You must take it to the next level, you must be the squeaky wheel, you must make noise! If you want to receive what you need, you have to talk loudly and walk with heavy steps.”

There were many valuable lessons to be discovered here.  The following is a step by step summary of what I learned from this experience.

Setting up an appointment with a new doctor

  1. Confirm: When you send your tests, scans, slides and medical history to a new doctor call and speak to them frequently until they have confirmed the arrival of your information.  How can your doctor read it if its not there?
  2. Confirm: Once they have your records call and speak with them frequently until they have confirmed that the doctor has reviewed your files and the pathologist has reviewed your slides.  How can your doctor help you if they know nothing about you?
  3. Confirm: Have them confirm in writing that your insurance is in network if they say that it is. How do you know you can afford this?
  4. Schedule: Once these conditions have been met, now you have the green light to move forward to schedule an appointment.

What happened to me?

  1. Yes! I’m in great hands!I sent my tests, scans, slides and medical history to the doctor’s office.  They confirmed it arrived.
  2. What?: When I arrived, my doctor said he never reviewed any of my medical records.  He said that the pathologists were still looking at my slides. Ask yourself, what is the purpose of seeing this doctor if they know nothing about you?
  3. How am I supposed to pay for this?: The hospital, front desk, and doctor’s office all told me that my visit was in network.  After the visit, they are now telling me that it was out of network and they expect me to pay a ridiculous amount of money for the services they claim to have provided.
  4. What happened?: I scheduled my appointment with the doctor before these requirements were met and I left with no valuable information.

Scans, Tests and Labs?

If the prospective doctor is ordering scans, tests and labs why are they wanting you to do them in their city?  If you must travel why don’t they have you do them locally where they might be cheaper and easier to access?

All in all, I learned valuable stuff, but at a very hefty cost.  The information I gained almost nothing directly to with my cancer.  There might have been some, lets dig into the big pile of the stuff that was discussed.

Links

Personal Advocacy

Disappointment

Disappointment

Disappointment

Disappointment

When the world is up in the air and nothing is certain but uncertainty, the experience of life becomes troublesome.  I was nervous before leaving Saint Louis for New Orleans.  There were so many pieces of the puzzle without guarantee.  I decided to make the best of whatever happened, I was going to New Orleans, I was going to live in the moment, no matter what happened.

The only concrete reality I had to work with was that the hospital confirmed they received all the medical records, scans and tumor slides I sent them.  This fact, this reality allowed me to relax and discover the anchor I needed to live in the moment.

A Conversation

When I spoke with the specialist I was excited, there was nervousness in my breath.  This increased as our conversation progressed, the more I asked the more uncomfortable I became.  It didn’t take long before I realized I had invested more into this doctor than the doctor had invested in me.

I inquired about my scans, labs and slides.  I thought he was going to show them to me, explain the findings and share the results, but none of that happened.  It was like he hadn’t read any of the reports.  My tummy churned, there was a certain pain inside of me, my gut was telling me he hadn’t read anything about my medical history.  So, I asked, and the answer was no.  He hadn’t read any of the information that was sent to his office from Saint Louis.  He hadn’t looked at any of the scans, tests or reports.  The doctor told me he wasn’t even aware that I had a Ga 68.

Thank goodness I had my medical history in my hand.  Had I not of brought my Ga 68 scan and other records he would have known absolutely nothing about my medical history.

It was heart breaking to sit beside this specialist, a person I had traveled hundreds of miles to see, only to be let down again.

Conclusion

What was the value of this journey?  New Orleans was a beautiful place, I have never been to such an enchanting land.  The significance of this trip was in the magical moments I spent with someone very special to me.  It was in the lessons I learned and the accomplishment of being my own health advocate.

Seeing a specialist isn’t enough.  You must take it to the next level, you must be the squeaky wheel, you must make noise! If you want to receive what you need, you have to talk loudly and walk with heavy steps.

Links

Big Pile of Disappointment

Confirmed

 

neuroendocrine specialist

Neuroendocrine Specialist

neuroendocrine specialist

Neuroendocrine Specialist

A few weeks ago, I journeyed to the mystical land of New Orleans.  I went there to meet with a neuroendocrine specialist.  This was supposed to be the visit, the one that would give me a leg up on the future.

We got to the office a little before eight o’clock.  My appointment was scheduled for 8am.  The doors were locked, for a moment I thought perhaps we were there at the wrong time.  After hanging out in the hallway for a bit, a staff person arrived and unlocked the door. The waiting room was decorated with all sorts of zebra patterns, it seemed like a fun looking place.  There was a door that led into what appeared to be an infusion room.  As I was looking around the receptionist had me sign some stuff then handed me paper work to fill it out.  There was an abundance of things to fill out.

So much to fill out I don’t know how they expected me to get it all done.  Ultimately, I prioritized what was important to me, which was getting the answers I drove all this way to get.  After a few minutes, we were moved into the examination room, in hindsight I felt rushed.  The vibe was like the staff or the doctor had some place to be and were running behind.

The doctor was friendly, he seemed like he was interested in listening and answering questions.  But the red flags began very early in our conversation, the first being that he didn’t know that we had just driven hundreds of miles for this appointment.  Another was he hadn’t looked at my medical history, my prior tests and scans or even my surgical notes.

In what I hoped would be the opportunity to explore my disease with a specialist became yet another unfortunate experience.  Another unfortunate moment stacked onto a pile of stinky disappointments.

Links

Disappointment