Blood Cancer Awareness Post 25: Did you know?

This will be brief, unfortunately so will the next several posts as I will be traveling…

These factors may increase your risk for developing a myeloproliferative disorder:

Polycythemia vera

  • Gender — Men are 2 times more likely than women to develop the condition.
  • Age — People older than 60 are most likely to develop the condition, though it may happen at any age.
  • Environment — Exposure to intense radiation may increase the risk for the condition.

Essential thrombocytosis

  • Gender — Women are 1.5 times more likely than men to develop the condition.
  • Age — People older than 60 are most likely to develop the condition, though 20% of those with this condition are under 40.
  • Environment — Some researchers suggest that exposure to chemicals or to electrical wiring may increase a person’s risk for the condition.

Primary myelofibrosis

  • Gender — Men are slightly more likely than women to develop the condition.
  • Age — People ages 60 – 70 are most likely to develop the condition.
  • Environment — Exposure to petrochemicals, such as benzene and toluene, and intense radiation may increase the risk of developing the condition.

Chronic myelogenous leukemia (CML)

  • Gender — Men are more likely than women to develop the condition.
  • Age — People ages 45 – 50 are the most likely to develop the condition.
  • Environment — Exposure to intense radiation may increase the risk of developing the condition.

Source: Myeloproliferative disorders | University of Maryland Medical Center http://umm.edu/health/medical/altmed/condition/myeloproliferative-disorders#ixzz2fxGrPbxg
University of Maryland Medical Center
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Until tomorrow,

Lina

Blood Cancer Awareness Post 24: “But you don’t LOOK sick…”

This is a re-post, but it is very important to me. This is an issue people with chronic illnesses run into fairly frequently. 

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.

Until tomorrow, 

Lina

Blood Cancer Awareness Post 23: Finding a Doctor

When faced the diagnosis of a rare disease, one of the first things that needs to be done is finding a doctor who can treat it. That’s a lie. The first thing you do is pick your jaw up off the floor, and start breathing again, THEN you try to find a doctor.

My GP had a recommendation for me for a specialist, which was a good thing, because I had absolutely no idea where to go. Unfortunately this doctor had never seen an MPN patient, and had never even heard of an MPN patient my age. At the same time that I was diagnosed, my mother was also undergoing cancer treatment, and she asked her doctor if they had any recommendations. Her doc suggested I see someone at the same facility. The doctor I went to see (my current doc) does not specialize in MPNs, however he sees many of them in his practice. Sometimes you need another opinion, and you may not know where to start. I would suggest visiting http://www.mpnresearchfoundation.org/Find-Treatment-Facility to look for a treatment facility, and doctor near you!

Tomorrow we’ll be talking about the dreaded “You don’t LOOK sick…” subject…

Until tomorrow,

Lina

 

Blood Cancer Awareness Post 22: The Infamous Binder

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

Blood Cancer Awareness Post 21: The Anatomy of a Hem/Onc Appointment

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

Blood Cancer Awareness Post 20: Support Groups

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

Blood Cancer Awareness Post 19: Clinical Trials

After my little rant yesterday about fatigue, we’ll get back on schedule today and talk a little about clinical trials.

What is a clinical trial? A clinical trial is a series of tests, research and drug development that helps to determine the safety and efficacy of a new drug treatment. They also document all of the adverse reactions seen during the trials.

There are several phases involved in a clinical trial, beginning with pre-clinical- non-human trials to test toxicity and determine what happens to the drug once introduced to a living organism (pharmacokinetic information). After they determine the general safety of the drug, they start testing the drug on healthy volunteers. The doses administered start as sub-therapeutic (less than a dosage that would be used to treat a patient), but do increase over time. This phase tests safety and efficacy of the drug. After the phase for healthy volunteers is completed they begin testing on patients. The doses given here are standard therapeutic doses, but it is presumed to have no therapeutic effects at this point of the trial. The next phase requires a larger number of participants (1000 or more). These patients are given therapeutic doses and at this point the drug is presumed somewhat effective. After this phase, the drugs are typically marketed to the public (under FDA recommendations and guidelines). At this point the long term effects of the drug are monitored, and research is continued on the data that was collected during the study.

To find out what clinical trials are out there, and whether or not you qualify, you can visit http://www.mpnresearchfoundation.org/Clinical-Trialshttp://www.nhlbi.nih.gov/health/health-topics/topics/clinicaltrials/links.html, or http://clinicaltrials.gov/

Tomorrow we’ll be talking about support groups.

Until tomorrow,

Lina

Blood Cancer Awareness Post 18: Fatigue!

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

Blood Cancer Awareness Post 17: Blood Cancer Resources

Today we’ll be talking about blood cancer resources. While there are many, we will be focusing on a few of the big online resources.

First, and my personal favorite: The MPN Research Foundation. Here you can learn more about each Myeloproliferative Neoplasm, find treatment options, patient stories, research studies, and support groups.

Next up is The American Society of Hematology. Here you can find information on ASH meetings, terminology, news, research, and patient resources.

Next is  The American Cancer Society, where you can find information on pretty much all known cancers, health tips, support and treatment resources, available research info, and volunteer opportunities.

Another good one is The Leukemia and Lymphoma Society. Here you can find Disease information, donation opportunities, research and local branch offices

This is only a brief list of resources, but they are very reliable, and contain very good information. i would recommend that when looking for disease information, that you start with these places. They are very comprehensive sources of information.

Tomorrow we will be deviating from my original outline, because I feel compelled to make a post about fatigue. Fatigue is a HUGE problem for MPN Patients, and many other patients as well…but I think I need to post this one asap given some recent experiences I’ve had.

Until tomorrow,

Lina

Blood Cancer Awareness Post 16: Myelofibrosis

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