Dose Two, Day Of

This entry is going to be a photo-blog of sorts…I tried to get some decent pictures as I went along.

Here’s the lovely box o’ drugs

Prepare the medicinal mise en place…..

Draw out 0.7mL of dilutant 

Inject the dilutant into the bottle of concentrate. (this picture didn’t turn out so well LOL….sorry!)

Find the place on your bod you’d like to inject, I chose my tummy. Of course you need to make sure and clean the spot you’re going to use with the alcohol swab.

I did my dose at around 5:30cst, and I am starting to get the headache I remember from last time…this is about how it started. Headach starts it off, then the body aches and chills…we shall see how it goes today.

I will update again tomorrow 🙂

This will be very quick, just wanted to bring you up to speed….

So…after day 2, the worst of the side effects have really dissipated significantly. I still have the headaches and the body aches, but the nausea is MUCH much less.

I will write a new entry tomorrow after my dose. We have moved the “D Day”, as I’m calling it, to Friday afternoons so I won’t lose any time off work. So…until tomorrow evening….

OK, I said I would write about my side effects etc as they happened…so here goes. First up, the process of administration…..

Thru the ACT Program from Merck, a four-week supply of the medication will be sent to either your home or your doctor’s office.

Here is the box-o-meds. This is a single dose. Inside each box is everything you need to self-administer the medication.

Here’s a view of the inside of the package. The red and purple circles you see are the tops of the vials.  One contains the dilutant, the other contains the concentrated  medication. The box also contains two needles, two alcohol swabs, directions for administrating the medication, and of course the typical insert that most medications come with re: dosage instructions/contradictions/side effects etc.

Here is just a little close up of the box contents.

Since I did my first dose at the hospital with my doctors I didn’t get images of the actual administration, but next week I will try to do that for you.

*disclaimer* Keep in mind that any dosage referenced is specific to me, the dosage for each individual will vary. Consult doctor, DO NOT go by what I write here.*

First: flip off the tops of both vials, unwrap both syringes and open ONE of the alcohol wipes.  Use that wipe to sterilize the tops of both vials. Uncap one of the syringes, draw back 0.7mL of air, insert the needle into the vial of dilutant. Insert the air into the vial of dilutant, and draw back 0.7mL of fluid. Insert the fluid into the bottle of concentrate. Withdraw the needle and gently swirl the vial until all the concentrate has dissolved and the remaining fluid is clear and colorless. Open the second alcohol swab, gain access to whatever part of your body you wish to use, I used my abdomen for the first shot. Uncap the second needle, withdraw 0.5mL of air, insert it into the vial with the concentrate, and draw out 0.5mL of solution. Wipe your chosen area with the alcohol swab and grasp some skin. Insert the needle smoothly and quickly at about a 45 degree angle. Make sure the needle is all the way inserted and slowly begin to inject. When I say slowly, I really mean it. It burns when it is first going in. After all the fluid is out of the syringe, withdraw the needle quickly. If you bleed a bit, wipe it off and place a band-aid on.

Dose One, Same day side effects:

Almost immediately I began to feel some discomfort around the injection site. It was a sort of burning/bruised feeling. Other than that I did not notice any side effects yet. About an hour after injection I began to get a pretty nasty headache. That was the only side effect for a while

Around 7 or 8pm (3-4 hours after administration), I began to get very achy. Muscle and bone pain. The kind of feeling you get when you have the flu. Slowly more feelings began to emerge. In addition to the aches, and the headache, I had mild nausea, dizziness, abdominal pain, fevers/chills. As the evening went on these side effects continued. I was having a very hard time getting warm, felt that I was freezing no matter how many blankets were on me, I tried a heating pad, multiple sets of clothing etc. Nothing would get me warm. After I went to bed this continued. I was shivering/shaking for the majority of an hour until I fell asleep. I awoke a couple of hours later feeling extremely warm. So warm that I got out of bed and had to undress and remove all my covers. I could not cool down. I fell asleep again, only to wake up a short while later covered in a cold sweat. I was getting up and down all evening with nausea, and chills/feverish feelings. The headache remained the entire night.

Dose One, day two side effects:

This morning when I woke up I still had the headache/aches and pains. The nausea was less, but still there. The feverish feeling is definitely still here. I am feeling dreadful today, if I’m being honest. The injection site is slightly bruised today and a little sore. I am seriously lacking in energy, so much so that I am exhausted just walking from the bed to the bathroom and back. All I want to do is sleep.

Speaking of which….I am going to crash now. I’ll post again tomorrow about whatever side effects may remain.

Em

I had no idea that I’d be writing this post so soon after my last one…but I am extremely glad that I can!!!

I received a call today from the assistance program provided by the drug company, that they had my application and were reviewing it, and in a few days I’d be getting a call back to finalize it and see if I would be approved. I was a little bummed that I’d have to wait a few more days…However, 4 hours later I received a second call saying that it WAS approved and that the medication would be at my door by Friday…as in two days from today…as in HOLY CR@P… my mouthy/pushy/assertive(read occasionally somewhat bitchy) attitude paid off!!!

I always tell you to be proactive, and assertive and participate in your own health care because you are your best advocate. Recently though I was even beginning to doubt my own theory. I have been feeling frustrated and hopeless about the situation.

Then it hit me. I’m too obnoxious/pushy to let this get at me. So, after TONS of phone calls, a somewhat scathing e-mail to administration at the hospital where I receive treatment, recruiting my insurance rep into the situation, etc…I finally got the result I was hoping for.

So again I will say to you, be persistent, be bossy, be assertive. Do not be bullied out of doing something that you feel is right for you. You have every right to be an active part of your treatment, and no one, not even your doctor, has the right to tell you that you CAN’T try something that will help you. Obviously you need to take their knowledge into account, but their personal opinion of a medication/treatment option should have little to no bearing on your course of treatment. If there is enough evidence that the method is effective/beneficial, pursue it as strongly as you possibly can. Do not be swayed, do not give up. Yes it is hard, yes it takes time, in my case it has taken almost four months, sometimes it can be longer. But believe me when I tell you the feeling I have right now, winning, succeeding, feels really good. So good in fact…that I think the bottle of champagne that is in my fridge right now will be opened soon. 🙂 It is time to celebrate

I will leave you with the usual message…be assertive, be persistent, be strong.

So…this post was going to be about the effects that delays in health insurance approval can have on patients, in a very general sense…however, I did not get the response I was hoping for from the experts I’ve spoken to(several MPN doctors and even the CDC’s statistical division)…that being said, you’ll be stuck listening to me whine a bit tonight. Fair warning…turn back now. No? Ok…well…can’t say I didn’t warn you…

I have been a patient at my doctor’s practice for 5+ years now. The treatment has usually been great. Recently this has changed. You are probably bored of hearing me say this, but I am what I call an informed, proactive patient. I want to be a partner in my health care “team”. Generally that has been working. Lately though, my “team” does not seem receptive to this. In October I requested that we try a new medication for my treatment plan. Not only did the “team” seem uneducated about this medication, I was told that the doctor was “not a fan” of the medication, and therefore most likely would not use it to treat me. After some persistence on my part, and encouraging the fellow on the “team” to look at new research, they seemed more interested and offered to prescribe the medication and try to get it covered by insurance (slim chance, as it’s an off-label use…)

I was very encouraged to hear that they were going to try. A couple of weeks passed, hadn’t heard anything, so I called, to be told that it had been denied. I asked what our next step was…they seemed surprised I wanted to persist. I asked if there was an appeals process, and was told “yes there was”. I asked them to go forward with it. A couple MORE weeks passed by and was told we’d failed again. Finally I told the “team” that I would like to call my Health Insurance Rep for advice. That was encouraged. I called, she called the insurance company and was told there had been NO APPLICATIONS for the medication we are trying to use. Funny…as I have been told on two separate occasions that it was “denied”. There has been no prior authorization applied for, which is required to try to get the medication covered by my insurance company. My rep is now corresponding with my “team” to see what the problem is. With proper evidence, off-label medications have been approved by my insurance company in the past.

I have in my possession eight articles from reputable clinical journals proving the efficacy of the medication I want to use. Not to mention several other doctors and patients who will all give glowing reviews of the medication. What I can’t figure out is why I have been lied to like this. I was under the impression that a doctor’s personal opinion was not supposed to get in the way of their ethical treatment of patients…

It has been brought to my attention that this could very well be a clerical error. Perhaps the people at the insurance company lost the paperwork…or filed it under the wrong name, which is why my records show no prior auth requests…who knows. I’m trying to keep an open mind…but that opening is getting narrower by the day.

Now, as frustrated and pi$sed off as I really am….I. Will. Not. Stop. I will continue to pester, and call, and try to get this straightened out. This is my health, my life, my treatment. I shouldn’t have to worry about bruising the doc’s ego. He is supposed to have my best interests in mind. Not his own pride. No patient should ever have to feel this way.

As always, remember to be assertive, proactive, and persistent. Do not give up. Ever.

Lina

Wait is a four letter word. Oh geez great opening…so that was definitely not the deepest phrase ever written… I mean the expletive kind of four-letter-word, of course. Being asked to wait for anything can be painful, coffee as it brews in the morning, at stoplights, in traffic, for the elevator, etcetera, etcetera… All of these things are inconvenient and irritating. Livable, but irritating.  
 
Imagine, if you will, having cancer. You have daily pain, and daily problems from the symptoms of your condition. Then imagine being told that there is a medication that can help to alleviate your pain, and minimize your symptoms. WOOHOO, sign me up! Right? Then they tell you you have to wait for insurance approval before you can have it. “Well…how long can that possibly take?” In this case…2.5 months and counting.
 
This is something hundreds if not thousands of people are dealing with ever single day. The issue, most often is off-label use of medications. (Off-label use is basically any usage not described on the medications label, as approved by the FDA)
 
The majority of cancer treatments begin this way, due to the fact that cancer drugs are often found to be effective against multiple types of malignancies. The problem arises when health insurance companies will not cover these off-label uses. They are usually deemed experimental and therefore excluded.
 
There are ways around these exclusions though, of course. There are appeals procedures thru the insurance companies, or to the drug company directly. There are also federal and state laws on the books that do require some state-regulated health insurance providers to cover the use of off-label drugs for cancer treatments, provided that the use is documented in authoritative drug reference books or in medical literature. The following states have laws on record. Alabama, Arizona, Arkansas, California, Colorado, Connecticut, Florida, Georgia, Hawaii*, Illinois, Indiana, Kansas, Kentucky, Louisiana, Maine, Maryland, Massachusetts, Michigan, Minnesota, Mississippi, Missouri, Nebraska, Nevada, new Hampshire, New Jersey, New Mexico#, new york, North Carolina, North Dakota, Ohio, Oklahoma, Oregon, Rhode island, South Carolina, South Dakota, Tennessee, Texas, Virginia, Washington# (Source: Association of Community Cancer Centers *Non-legislative agreement with insurance providers #Administrative rule with force of law)
 
I have stressed repeatedly the need to be an empowered patient, and if there was ever a situation that required a proactive approach, this is it. Do not sit idly by and wait to hear from the doctor’s office. They are busy, they have many patients to handle, and despite their best efforts, there is the chance that you will fall thru the cracks. Do not take no for an answer. Do some research. If your state is on the list, try to find studies that support the use of the medication in question. For MPN Patients, I suggest visiting mpnresearchfoundation.org to find articles supporting the use if PegInterferon(the drug I am waiting for). For other cancer patients I would suggest visiting cancer.org, or lls.org.
 
Being sick is hard enough as it is, and being told to wait makes it even harder. To make the wait more tolerable help yourself in any way you can by being proactive, and resourceful. Together with the perseverance of your doctor’s office and staff you will get the care you need.
 
Information for this entry was gathered at cancer.gov

And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom. ~ Anais Nin

It came to my attention that I really haven’t given any information as to why I am blogging, and why I have chosen such a narrow subject about which to write the aforementioned blog

I’m Lina, a 24 year old Essential Thrombocytosis patient. Essential Thrombocytosis or ET is a Myeloproliferative Neoplasm (MPN). Basically it means that my bone marrow is extremely over-zealous about producing blood cells. Platelets in particular. I was diagnosed in 2005, and it has been a charming roller coaster ever since. Enough about me….now why I chose to whine in a public forum….

The short answer is…because I wanted to.. But the better answer would probably be that in the 6 years I have had this disease I haven’t really had much of an outlet to talk about it. My friends and family listen, which is nice, but sympathy really only goes so far. I attended a meeting in Chicago earlier this summer, and it was mentioned that other patients might enjoy hearing my perspective on things (as I would enjoy hearing theirs), so here it is. I hope that this will be helpful to others. If anyone has questions or would like to suggest a topic, feel free to leave it in the comments section.

Thanks!

The Infamous Binder
 
In my first post with the MPN Research Foundation I wrote briefly about the binder that I take to every appointment. I have received several questions about it since then, and just thought I would elaborate on why I use it, and what I include in it.
 
First and foremost: I have NEVER been a very organized person. Just ask my parents about my bedroom or my school work as a child…yikes. After being diagnosed with ET though, and after my brief bout with apathy, I felt that my life was sort of tumbling out of control. I had to find a way to create some order to keep myself sane..ish. 
 
Not knowing about the disease, or how to manage it, I took control the only way I could think of. I did as much research as I could and organized every single piece of information I could get my hands on. That way, any minor changes would be seen by me, nothing would get by me and I’d be an active member in my treatment team. Even though I was not in direct control of the things that were happening to me, I could at least monitor them and that made me feel a lot better. This information all went into “The Binder”. 
 
The Binder is in 6 parts. I’ll go ahead and vaguely outline it a bit so you can get the general idea
I) Questions/Answers for doc
-Just like it sounds this section includes any questions that I have for the doc at the time..either about symptoms I’m having or a new article I may have read about treatment method, clinical trial etc. Make sure you have a notebook with you though to go along with your questions. You always want to be able to write down the answers. I made the mistake of not writing them down for a while and without fail I would forget the answer to the questions by the time I wanted to refer back to them.
II) New/Recurring Symptoms
-As new symptoms occur, I write them down and keep track of what they were, when they happened and how long they lasted. I find this to be helpful, particularly when I can link the symptoms to changes in  medication or blood count. Which leads me to section 3  
III) CBCs
-I get a copy of every CBC I have. This helps me to get familiar with my blood counts, what my normal range is, and how the numbers fluctuate as medications change.
IV) Medical History/Appt Notes
-I have my entire medical history including surgeries, medications, my current diagnosis and and changes there may be. I also like to have my appointment notes from my onc. It takes a few days to get them once requested, but it is very useful to have. I can refer back to the notes from a particular appointment and get clarification on something that was talked about, and compare the notes to previous CBCs and see the conclusions the team has drawn from the changes etc.
V) Scans/MRIs/CTs etc
-These come in handy if a doc asks “Have you had a (fill in imaging test here) recently?” You can say conclusively no or yes and what date. But honestly, I keep these because they’re kinda cool. I especially love the x-rays of my hips from when I had orthopedic surgeries…you can clearly see the outline of the screws in my hip…it’s pretty awesome…Yes, I am a huge nerd. Thanks for noticing 🙂
VI) Articles/Research
-These are good to have because as I have stressed before YOU are your best health care advocate. Doing research and learning what could be out there is not pushy, it is not needy. On the contrary, it is necessary, in my opinion.
 
This binder comes with me to the oncologist, to the GP, heck…if I ever think it’s useful I’ll probably take it to the dentist with me. I have thought about carrying my binder with me at all times. For convenience sake though, I did away with that idea and made a digital version of my binder. I keep it on a portable USB drive that I have in my wallet at all times. I update it frequently to make sure that it is current. Having a chronic illness, you never know what may happen, so it is best to be as prepared as possible.
 
I will say it once again: You are your best advocate. If you do not stay on top of your health care, then who will?

And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom. ~ Anais Nin

Hey all, below is a post that is very significant to me. The issue for the Chronically Ill of “But you don’t LOOK sick…?”

MPNs are “Invisible Illnesses”. There really are not many outward signs that show we’re sick, but boy do we feel it. I don’t know about the rest of you, but , no matter how I look, sometimes I feel like I’ve been run over by a truck. 

However well-intended the phrase may be, saying “but you don’t LOOK sick…” to a sick person is pretty insulting. The implication being that we are faking it or that it’s not real. We don’t look sick? Well…what does sick look like, pray tell? Should we all be emaciated, bruised, or limping? What does it take to be acceptably sick? This may surprise some…but not all sick people look alike. Shocking, I’m sure. (insert snarky eye roll here).

We all have good days and bad, but for the Invisibly Ill, the bad days often outnumber the good. Most of us, though are obliged to put on the happy face and get on with things. If we didn’t, we wouldn’t be able get much done. I often feel like I am two completely different people; the one on the outside, who looks just fine, and deceives everyone around her; and the one on the inside who is exhausted, and battered and miserable. 

I learned to put on the happy face real quick when I got my first “Grown-Up Job”. I started at my office as the receptionist, so putting on the perky, bubbly personality, however fake it may have been, became a part of my daily life. Fatigued, sick, headache? Didn’t matter. That smile was plastered on. Inside I might have been cursing the phone for ringing, but I’d still thank you for calling and inquire how I could help. If you didn’t know I was sick…you would not know. There are days though when I just can’t fake it anymore, my fatigue catches up with me and knocks me out. On those days, I tend to hear that dreaded “but you don’t LOOK sick…”. Also on those days my sarcastic side will often think(or sometimes say, depending on the audience) “And you don’t LOOK like a jerk..but I guess appearances can be deceiving, can’t they?”

Believe me, I am neither wanting nor expecting sympathy.  Understanding would be wonderful though. Yes, it’s true that we don’t fit the picture in most people’s heads of what sick should look like, but trust me while these illnesses may be invisible, we and our pain certainly are not. 

Please, think twice before telling us we don’t fit your image.