Today’s post is a repeat from very early in my blog, but I hope you’ll enjoy it 🙂

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?

Tomorrow we’l be talking about how to find a doctor!

Until tomorrow,

Lina

Today’s post will probably be pretty short….Yesterday was a treatment day, so I’m feeling pretty crummy right now 😦

We’ll be talking a little bit about what to expect from an appointment with your hem/onc. The first step at my appointments has always been to head over to the lab for a CBC. After the blood draw comes waiting…generally a lot of it. This may be different for some…but at my doc, there’s aaaaalways waiting. During the wait is usually when I go over the questions I want to ask, and make sure my binder is in order. (I’ll be talking about the infamous binder tomorrow) Next is usually vitals. Once your name is called, the nurse will check your blood pressure, temperature, pulse-ox, and weight. This information is keyed into your chart to track your changes, and overall health. At this point, it’s off to the exam room where there is usually a little bit more waiting…Then in comes the doc, at which point you go over your test results, and talk about changes in your progress, symptoms, etc. Here is where I like to bring out my binder/notebook and ask whatever questions I might have.

Sometimes the doctor is in a rush, but you always need to be assertive and make sure he or she does not rush through the appointment. That is one of the unfortunate thing about specialists…because they are generally in such high demand, they are often overbooked. Which means they are often trying to get through as many appointments as possible.

After all of your questions have been answered, the doctor will make recommendations for your treatment, changes in dosage, or medication etc. Then you’ll be off to schedule your next appointment, and on your way home.

As I said, this post is pretty short, but tomorrow’s will be better 🙂 For now, I’m off to nap.

Until tomorrow,

Lina

Today we’ll be talking very briefly about support groups, where to find them, and what they can do for you. Of course friends and family are a great first line of support, but sometimes it is really difficult to get friends and family to understand what you’re going through. There is something really nice about talking to someone who really has been in the same situation you have, or felt the same symptoms, etc. 

Support groups can mean different things to different people, but luckily there are options for where to get support. 

There are those who wish to stay relatively anonymous, so for them an online support group may be good. There are a wide variety of support groups to be found online, and from many very reliable sources. My personal favorite is MPD Chat. A Google Group, run by a wonderful woman, Beverly. The group is extremely knowledgeable and supportive. What I like most about them is that they are specifically geared towards MPNs! There are other sources for online MPN Support groups as well, and you can find that information here.

There are also a wide variety of live and in person support groups that meet periodically.I had never been to one before until this past May, but it was such a fantastic experience, it inspired me to try and form a local group for patients in my neck of the woods. (If any of you are reading, I’m hopeful that our first meeting will be in October!!) If any of you have not yet gone, but do have the opportunity to attend a support group, I encourage you to try at least once! You might be surprised by what you find 🙂 It was so nice to finally be able to talk face to face with other patients. Until that meeting, I had really only met one or two other patients. It was so interesting to be able to talk about something I’ve experienced and have a whole room full of people say “I know what you mean!” rather than the blank stares I usually get from people! It was a nice feeling to finally really feel I’m not alone. Click here for more information on where to find support groups 

That’s all for now, tomorrow we’ll be talking about the anatomy of a hem/onc appointment.

Until tomorrow,

Lina

So…in my original outline for this month, I had every day mapped out, and predetermined…but given some recent events, I’ve decided to switch it up a bit. Today we are going to talk about fatigue. A lot of this is going to be rhetorical ranting, but please stick it out if you can 🙂

Have you ever tried to explain fatigue to anyone? It’s pretty tough. I’ll wager those of you who have tried are nodding in agreement right now. It is really difficult to explain fatigue to someone who does not have a chronic illness. The responses I get most often are “So…you’re tired? Just take a nap! You’ll feel better” or even better “Ooooh…you should try ______ (fill in random supplement/vitamin cocktail here) it worked for my best friend’s sister’s neighbor’s dog walker. It will definitely fix your problem”

As for the first suggestion: No…a nap will not fix it. No matter how well I sleep, or how regularly (or healthily) I may eat, I am always tired. For example, a short while ago I was invited to a social gathering by a friend. This gathering was to occur after work at the end of the week. After telling this friend that I was really exhausted, and just not in the mood to go out, they said “Can you take a nap and tough it out?”…I’m sorry, no; I “tough it out” every single day. Any day that I am able to make it out of bed, go to work, and function normally for a 10 hour stretch IS an accomplishment in itself. Suggesting to someone who is telling you about their fatigue that they should “tough it out” is really not helpful.

As for the second suggestion…no. Just…no. I appreciate the thoughtful suggestion, and I’m sure it’s well intended, but I assure you that I have tried just about everything out there to possibly perk me up. Exercise, diet, multivitamins, (basically all the vitamins in the alphabet for that matter), coffee, and even energy drinks(don’t tell me doctor…)! None of these things have worked long term, (for me at least) nor do they really eliminate the underlying fatigue that I still feel every single day.

The fatigue felt by someone with a chronic illness is not the same “tired” feeling that you experience after a long day at work, or the tired feeling you can get after a good workout. It is a constant thing. The best way I have found of explaining my fatigue is The Spoon Theory; written by the brilliant Christine Miserandino. It really is the most accurate way I have come across to explain it: You are given certain number of spoons per day. Each activity you perform throughout the day will cost you some spoons. You cannot replenish your spoons, and once they’re gone; they’re gone. A person with a chronic illness has to find ways of rationing spoons throughout the day to be able to function normally. This may include sacrificing a fun evening with friends, to be able to function normally the next day. So here is my note to any readers out there who do NOT have a chronic illness: Before telling someone to “tough it out” or “try this!” please remember that we only have so many spoons per day, and guilt trips really don’t help.

So…that’s all on that for now. Tomorrow we’ll be back on track. We’ll be talking about Clinical Trials, where to find them, what the stages are, and how they help us!

Until tomorrow,

Lina

OK, so…as mentioned earlier I had a terrible migraine today (Sunday 9/15) so this article may not be as good as I’d like. I do apologize in advance if this is a little scattered, or poorly worded. Also, please leave comments if you have anything you’d like me to add!

What is MF?

So we have covered MPNs as a whole, PV and ET, now we will talk about Myelofibrosis.

Myelofibosis

Myelo-From the Greek Muelos which means marrow

Fibrosis-Which means scarring, or thickening

To sum that up: A scarring of the bone marrow.­­

MF can be either primary or secondary. Primary MF occurs on its own, and secondary as a progression of either PV or ET. The scarring of the bone marrow which occurs during MF inhibits normal blood cell production, leading to dramatically lower than normal blood counts.

As I said in the issues before, each of these MPNs can be very difficult to diagnose, as the symptoms can be difficult to pinpoint, and often lend themselves easily to a variety of diseases. I think I will go through and answer the same some of the same questions as in the first entry, applying them to MF.

How are you diagnosed with that disease/condition/thing?

How do they treat it?

When will it be cured?

As with most MPNs, MF can often be discovered after some other event/illness/diagnosis.  Most commonly diagnosis happens after a series of blood tests; but as each case presents differently, the doctor will take each patient’s individual medical history and physical exam into account during diagnosis. A bone marrow biopsy is the definitive diagnostic method. Common symptoms are bone pain, itching, bleeding, bruising, enlarged spleen (also seen in other MPNs), night sweats, and of course, fatigue (seen in pretty much all MPNs).

Treatment for MF varies by patient. Treatment ranges from watch and wait, to drug therapies such as Jakafi, and on to stem cell transplants. (we will get more deeply  into treatments of all of the MPNs later this month.

As for a cure, this is the same as with any MPN. There isn’t a widely accepted “cure”; however a stem cell transplant is close. Unfortunately this is extremely  risky, and not recommended for all patients.

I do not claim to know all there is to know about ANY myeloproliferative neoplasm for that matter…. I am sure that I missed something here, but this is just my general understanding, and the way I would explain it to someone who knew nothing about MF. I would like to take this opportunity to invite MF patients to add to this. Particularly things like “What do you wish you had known at diagnosis that no one told you?”

Tomorrow we’ll be talking about Blood Cancer Resources.

Until tomorrow,

Lina

Yesterday we talked about PV, today on to the MPN closest to my heart, ET. (Below, is another repost from earlier.)

What IS ET?

Essential (or primary) Thrombocytosis

Essential (or Primary) – Meaning the disease is not secondary to another problem.

Thrombocytosis(Made up of 3 words) Thrombos – meaning lump or clot –

Kytos – meaning cell

And Osis – meaning condition

To sum that up: A condition in which you have too many thrombocytes (aka platelets) in your blood stream.

ET affects mainly the platelets, or clotting factor in your blood. This can lead to a variety of different issues and symptoms including, but not limited to headaches(migraines), dizziness, abdominal pain(due to enlarged spleen or possibly liver) increased risk of blood clots, and stroke, and visual changes or disturbances.

As I have said in the issue before, each of these MPNs can be very difficult to diagnose, as the symptoms can be difficult to pinpoint, and often lend themselves easily to a variety of diseases. I think I will go through and answer the same some of the same questions as in the first entry, applying them to ET.

How are you diagnosed with that disease/condition/thing?

How do they treat it?

When will it be cured?

As with most MPNs, ET can often be discovered after some other event/illness/diagnosis. Regardless of how the disease is initially discovered, there are several criteria that must be present to help verify which MPN you are dealing with. Most commonly diagnosis happens after a series of blood tests; Complete Blood Count (CBC), Comprehensive Metabolic Panel (CMP), and often Bone Marrow Biopsy (BMB – this is necessary for ET diagnosis). What the doctor is looking for in a CBC is an abnormal increase in platelet counts. (The normal amount of platelets for people to have in their system is 150,000-450,000 so above that is considered abnormal, and docs will probably want to look further) There are several things that can cause high platelets though…infections, trauma, surgeries etc…so a repeat CBC is often tried first, and then a BMB is usually had (At least this is how it was with me). With a BMB your doctor will be looking at bone marrow abnormalities and genetic markers in the marrow.

Treatment for ET varies by patient. Treatment ranges from watch and wait, or pheresis, to prescription medications like Pegylated Interferon, Hydroxyurea or Anagrelide(More common for ET patients, but PV can take it as well). Pheresis is the process of filtering the blood, basically. You get hooked up to two IV lines, one out, one in, and your blood is sent thru a centrifuge, the excess platelets are spun off, and then the rest of your blood is given back to you.

As for a cure, this is the same as with any MPN. There is no “cure” per se (other than a bone marrow/stem cell transplant…but that is only done for MF patients at this point). The disease can be managed thru treatment, and one can live a normal life with little to no interference from the disease.

I do not claim to know all there is to know about ANY myeloproliferative neoplasm for that matter…. I am sure that I missed something here, but this is just my general understanding, and the way I would explain it to someone who knew nothing about ET. I would like to take this opportunity to invite ET patients to add to this. Particularly things like “What do you wish you had known at diagnosis that no one told you?”

*Note: I have a migraine at the moment and can barely see…so please forgive any typos that may be present. Also…depending on how long it lasts, I may not get tomorrow’s blog out on time! Please be patient with me!

If the migraine does clear up, tomorrow’s article will be about Myelofibrosis (MF)

Until (hopefully) tomorrow,

Lina

So far we’ve talked about our blood, it’s parts and functions, leukemia, lymphoma and myeloma. Today we will start covering Myeloproliferative Neoplasms.  (No, you’re not having deja vu…the post below is a re-post from earlier in my blog)

I have been asked what exactly an MPN is by many people: friends, family, co-workers random strangers at the doctor’s office(so, what are YOU in for…?)… and I have struggled over the years with finding a good way to explain it. I have come up with a couple of silly analogies about a factory going haywire and I also dabble with the more technical explanations from time to time…but that tends to leave me with blank stares… or they smile and nod along with me, meanwhile I can see the information going in one ear and out the other……

In this first of four articles, I am going to try to find concise ways to explain MPNs as a whole. In the subsequent entries I will try to do the same for each ET, PV and MF.

SO…here goes.

If we break down the words they give a pretty good working definition.

Myeloproliferative Neoplasm:

Myelo -From the Greek Muelos which means marrow

Proliferative/Proliferation -to grow or multiply by rapidly producing new tissue

Neoplasm – an abnormal growth of body tissue

So basically…the bone marrow produces lots and lots of cells that do not belong there. That is my basic working definition of a Myeloproliferative Neoplasm. It’s simple, not very technical, and it doesn’t tend to leave people’s eyes glazed over. For a lot of people, that is a fine answer, and they don’t need to know anything else.

Others want to know more, though. How did you find out about/were diagnosed with that disease/condition/thing, “is it …you know….(whisper)cancer?”, how do they treat it, when will it be cured, etc etc….Come to think of it…those are all questions that patients ask too. I have probably asked all of these questions a few times. I’ll try and answer these the way they were explained to me, and the way I understand them…so…these words might not make any sense whatsoever once they exit my head….

We’ll start with the first question. How is one diagnosed? From what I have seen, read, and heard from other patients, an MPN diagnosis is typically secondary to another condition/event. I do not know statistics on this at the moment, but the majority of people I have spoken to were diagnosed after a heart attack, stroke or blood clot. That is not the only way these diseases are diagnosed. Sometimes they are discovered during routine blood work, or during a physical, but more commonly they are diagnosed after a major event. Part of the reason for this could be that symptoms of MPNs are fairly generic, and that makes it difficult to pinpoint their origin. For example I had bruising, headaches and fatigue. Put those three symptoms into a web search…and you’ll come up with 4,310,000 search results. If you pull up one of those Internet Diagnostic Websites(I won’t use the name here…but I bet you all know what I mean…) it pulls up 127 different possible diagnoses, from acute stress to cat scratch fever… So it’s easy to see why someone could go undiagnosed for a while. Once it is narrowed down to an MPN, there are different diagnostic criteria for each of the different conditions. The doctor will use these criteria to determine diagnosis and from there he or she will decide on the patient’s treatment.

“Is it…you know…(whisper) cancer?” I have never understood why people get so reverent, (or I guess fearful is more likely) of a word? Is it going to jump out and infect you if it hears you speak of it? Don’t worry, it can’t hear you…you can say the word. This is a bit of a touchy subject though. By its most basic definition (a disease caused by an uncontrolled division of abnormal cells), then sure. MPNs are a kind of cancer. They are not generally defined as malignant (the tendency of a condition to be come progressively worse, and eventually lead to death) conditions though. (unless they are positive for the Philadelphia Chromosome, in which case you are most likely looking at Chronic myelogenous leukemia– which is another issue unto itself) Prior to the 2008 decision by the World Health Organizations, we called these conditions MPDs Myeloproliferative DISORDERS. There are people who feel that after the WHO changed the classification from Myeloproliferative DISORDERS to Myeloproliferative NEOPLASMS, that somehow they have magically become something else. That isn’t true. The fundamental nature of the diseases has not changed. What has changed is their classification. (Which almost seems to have been done for coding/paperwork purposes really) MPNs contain many of the same symptoms that you might see in a lot of different diseases, so instead of leaving them off in their own lonely little category, they have been lumped in with everything else. For some people the word “cancer” is very intimidating, so they prefer not to have it attached to their condition, which is fine. To me though, cancer is just a word. It won’t jump out and bite you, nor should you allow it to affect your outlook on your treatment.

As far as treatment goes, this will vary by disease, and also by patient. Treatments can include anything from watch and wait and periodic blood work all the way up to a bone marrow transplant. I will get more in depth about treatments in the next few articles. In some cases the treatment is almost worse than the symptoms of the disease that it treats (which is true for pretty much any disease). There are some people who feel that holistic treatments are the way to go. Honestly, I don’t know much about holistic treatments, and (as narrow minded as this may be…) I personally feel more comfortable sticking with conventional scientific methods. I know I know… “why do you want to put those nasty chemicals in your body…?” Well, those nasty chemicals have been through many years of clinical trials, countless tests, reviewed by hundreds of patients, doctors, clinicians, and scientists, and that’s just how I feel comfortable. It may be different for others, and I encourage them to seek out the (well researched, please) therapy that they are comfortable with.

When will I be cured? Well, that’s a good question with a simple answer. I won’t be cured. MPNs are chronic diseases. The way my doc puts it “Plan to live a long life with this”. Well that’s comforting…sort of. All the doctors I have seen (1 hem/onc who had never seen an MPN before in his practice, and 2 very well respected hem/oncs who deal almost entirely with MPN patients) all tell me that yes, I will have ET forever, but that it will almost certainly NOT be the cause of my ultimate demise. The majority of MPN patients that I know who have passed away over the years did NOT die of anything to do with their MPN diagnosis. Most died of old age, some were complications of another disease,, etc. That is not to say that MPNs can not cause death, or that they are not serious. They are. Owing to the difficulty in diagnosis, MPNs have probably caused more deaths than we know about. Even though these diseases are not “curable” exactly, you can still live a nice full happy life, with minimal intrusion from your disease once you have gotten the proper treatment.

So there it is. That is my very general outline, and answers to the basic questions that I have heard most often. Over the next few weeks I will be getting more specific about the types of MPNs ET, PV, and MF. Stay tuned for the next entries!

Tomorrow we will talk about Polycythemia Vera (PV)

Until tomorrow,

Lina