When I was first diagnosed, I knew absolutely nothing about MPNs. And for a while…I was totally fine with that. But after a few months of not knowing what was going on with me, or my treatment, I decided to do some research. Some of what I learned was reassuring, and comforting. Some of it much less so. (I should add that the majority of my research was done on the internet because, honestly…where else does a freshman in college do research…) The internet is a wonderful place to find information; but I advise using large amounts of caution – the internet can also be a scary place.

One of the first things I saw when I started researching was that the disease could…change…and become something more serious. Like Myelofibrosis, or Acute Myeloid Leukemia (AML). This terrified me. I didn’t really have hard evidence to tell me that I would progress to MF, or AML…but it was in the back of my mind that it was a definite thing. While the likelihood of it actually happening is pretty low, it is difficult not to focus on. Toward the beginning of my diagnosis I was always paranoid or thinking the worst, and I had to force myself to stop jumping to those conclusions.

While at the Chicagoland support group, one of the questions I asked Dr. Stein was about disease progression. How likely is it really? He said that the risk of progression to MF from ET goes up to about 10% after 15 years, and for PV patients it was about 15% after 10 years. I felt a lot better after hearing him say that.

Even though 10% is pretty low, I was still curious about symptoms of disease progression, so I asked Dr. Ruben Mesa, of the Mayo Clinic in Scottsdale for some information. He very kindly agreed to help me. The following information is paraphrased from an e-mail I received from Dr. Mesa.

For patients with advanced MPNs, there tend to be many difficulties and symptoms which indicate progression. For example, a drop in blood counts; either bringing blood counts to relatively normal levels where before they required intervention thru phlebotomy or drugs, or bringing them so low they require transfusion. An enlargement of the spleen is often seen, which causes pain and discomfort. The bone marrow also becomes scarred.

There is still no definitive reason behind progression in MPNs. It is thought that JAK2 inhibitors might help to delay disease progression, and also that drugs like Interferon has been shown to help to delay it. Aside from that though, there is not a clear reason/form of prevention.

Another way patients progress is typically from MF to Acute Myeloid Leukemia. (it is less likely, but it is also theoretically possible to see progression from ET or PV to AML).

As a patient I still fear that progression from ET to MF one day, or even possibly AML…but I try really hard not to let it nag at me. When something strange happens (A new or different symptom, for example) I do wonder…but I don’t automatically assume the worst anymore the way I used to.

I know I’m repeating myself when I say this; but I strongly recommend being an informed patient, and a partner in your own health care. Things are much less frightening when you know what they mean, and it is much easier to take care of yourself when you know what is going on.

You are your own best advocate. If you do not take care of yourself, who will?

Until next time,

Lina

First, I would like to apologize. I failed at my goal of daily blogging. I am very disappointed in myself 😦 Not that this is an excuse, but I was traveling, and also feeling pretty sick. M and I were visiting family and friends out of town just over a week. (LOTS of driving, but REALLY worth the trip!)

Second, I would just like to say that I will try over the next couple of weeks to redeem myself! Also, I will be posting weekly from now on. My goal will be to post every Saturday. Subjects will vary, but will almost certainly be MPN focused 🙂 

Third: Does anyone have any suggestions for posts coming up, or critiques of my posts from Blood Cancer Awareness Month?  (other than the fact that I failed at posting every day…) 

Let me know if there’s anything you would like to see here!

Until Saturday,

Lina

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

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

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