The Prodigal Blogger Returns…again

Well…it happened again. I planned on just taking a very short break from writing, and ended up on a 7 month hiatus. I really need to stop doing that. I will again make an effort to be less of a slacker, and try to write on a weekly basis moving forward!

So…originally I had planned for this to be a bit of a rant on the irritating trend of “cures” and “holistic treatments” and things, which do nothing but sucker the desperate, and frightened, who feel they are out of options.

Don’t get me wrong, I still fully intend to write that rant… Just not today. Today is too beautiful a day here to spend writing annoyed words. Did I mention that it is FEBRUARY in the Midwest… and it’s 75 degrees?!? Today is a day for enjoying the weather, and being happy. So… perhaps a quick update, and then some ramblings to ease back into this blogging thing. Sound OK? Great.

So… my last blog was in… July I believe…YIKES. Sorry readers… if there are any of you left… Hopefully you didn’t all give up on me. Let’s see… since July what has been going on in my world… well…I was lucky enough to go to San Diego for the Women and MPNs event hosted by the MPN Advocacy and Education Foundation. The event was extremely informative, and empowering (and I promise to go into deeper detail of the event in my next blog). Ummmm…I decided I no longer wished to be a blonde, and am now a crazy-unnaturally colored-red-head…M and I purchased a new vehicle, we had a lovely holiday season with family, what else…hmmmm…that may be in for the personal life updates at the moment….

Health wise, things are in a bit of stasis. I’m still only on baby Aspirin at this point. My platelets have been bouncing around quite a bit though… not sure how to explain that. I’ve been in the 500Ks, 600Ks, 700Ks. Most recently I went from 530K-750K in the span of a month. The explanation from the hem/onc is refractory effects of the Interferon. I suppose I need to do more research on the Interferon and its lasting effects… because it’s been (I think) about 2 years since I stopped taking it… and I would have thought that I’d stop seeing it’s effects by now. Also… my white count was high the last 2 checks, red count too. Not sure what’s shaking at the moment. As for how I’ve been feeling – about the same as usual. Fatigue is still my worst enemy, I am often so wiped out by the end of the work day that all I want to do is come home and go to bed, but I am fighting those urges. What I need to do is get back into a regular routine of some form of exercise after work… Perhaps that would help me fight the fatigue.

I’m thinking come Monday (2/22) I’ll start doing yoga when I come home again… and I’ll write about it, as a form of accountability. Anyone wish to join me? We could be accountability partners, and help one another through our fatigue slumps! If anyone would like to join my “team” let me know. E-mail me at linampn@gmail.com, and we can start an activity blog for one another!

That’s all I’ve got to ramble about for now, I’ll be back soon to update you on the yoga-front…

As always, you are your own best advocate. If you do not stand up for yourself, who will?

Until next time,

Lina

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Living Well with MPNs 2015…and a couple of quick announcements

Living Well with MPNs…

Presenters

 Dr. Susan Leclair, PhD, CLS (NCA) Chancellor Professor Emerita and Patient Power Host

Dr. Brady Stein MD, of Northwestern

Dr. Stephen Oh of Washington University, St. Louis

Lindsey Kalhagen, PA of Northwestern

Andi Malitz, Patient Advocate

David Shobrook, Patient Advocate

For the second year in a row, M and I were lucky enough to attend the Living Well with MPNs event held in Chicago. This event was hosted by Northwestern University, Robert H. Lurie Comprehensive Cancer Center, presented by Patient Power. Just like last year, the event started with registration, a little networking with other patients, then into the meeting at 10am.

As the name of the event suggests, the focus is on encouraging us to live our lives as well as we are able. In order for anyone to do this they need to be willing to seek out the things that will help them to live their best life.  Most importantly, one needs to be informed, and not afraid to ask questions.

I know it can be scary to ask questions at times. Appearing uninformed has always been a fear of mine. But that’s the beauty of this event.  We are all in the same boat. We are all either patients or caregivers. We have all felt overwhelmed by the sheer number of questions that we had when we were diagnosed. The knowledge that we are in a room full of our peers makes it much easier to open up about the things that scare us, or the things we don’t quite understand.

There were lots of very good questions asked, and our presenters gave concise, easy to understand answers.  The doctors explained that cognitive symptoms are a lot more common in MPNs than previously thought. As more and more patients have been reporting mood disturbances, it has been more strongly connected to the MPNs themselves. Rather than sending patients from doctor to doctor (leaving us to feel rather like ping pong balls…) doctors are acknowledging that the mood disorders may be more directly connected to MPNs, and are more openly collaborating for treatment with other physicians.

We also discussed the genetic factors of our diseases. There often seems to be a little confusion between something being genetic, and something being hereditary. Our diseases are genetic, meaning they are caused a genetic mutation (JAK, CALR, etc.). That does not necessarily mean our diseases are hereditary, meaning passed from generation to generation.

The answer that seemed to stand out most to me had to be to this question: How should you decide on a course of treatment for an MPN? The consensus among the doctors presenting is that the history of the patient, and the way they are feeling, are more important when determining treatment plans than lab values alone. For instance, an ET patient with platelets in the upper 900Ks, but who has no history of blood clots, headaches, or other thrombotic events, and feels well, does NOT necessarily need prescription treatment. While an ET patient with platelets in the 500-600K range, with history of blood clots, and constant disruptive symptoms, may require prescription intervention.

There are new advances, more research, and better information available every day. This is why it is in our best interest to be as well informed as possible. Without knowledge, how can we expect to Live Well with MPNs? It is our responsibility to be proactive and assertive when it comes to our health. If you are not comfortable with the direction that your treatment is going, then speak up. If you do not feel that your doctor is receptive to your thoughts on treatment, then seek another doctor. We deserve to feel that we are heard, and that we are respected. The doctor/patient relationship needs to be a relationship of mutual respect – it needs to be a partnership.

I would like to take this opportunity to thank Patient Power again for presenting this event, and for all of the information and videos available on their site!

As for my announcements – First I am excited to say I will be visiting NYC for the first time this week. I’ve been asked to participate in a Patient Advisory Board for Incyte. I’ll be there this coming Friday. Not much time for touristing, but I’m pretty excited to be going!

Second, I’ll be going to to San Diego for the Women in MPNs conference coming up in September.

That’s all for now – I’ll post what I can about the events after they happen.

As always, you are your own best advocate. If you do not stand up for yourself, who will?

Until next time,

Lina

Friends, Fatigue, and Fun…or lack thereof…

Lately I have been even more fatigued than usual, and as such, I have participated in very few activities outside of work.

People may find it strange that at the age of 28, I don’t have a thriving social life. Well, It’s tough to justify going out after work, and expending precious energy that I have no way of recouping. The question is, how do I explain that to my friends? They are all going out after work, having a good time, enjoying each other’s company. Also, how do I justify depriving M of the fun that he could be having, rather than staying home with me and the furry-writing-buddies?

My friends all know about about my situation. but I don’t know that they necessarily understand how much it truly effects me every day.

My typical week looks like this: Monday-Friday – Alarm goes off at 5:15, get up (or snooze a few times THEN get up…whichever), shower, dry my hair, put makeup on, get dressed…by this point, I’m already feeling fatigued. Then I drive to work. When I get to work, I begin the daily activities, check e-mail, get some coffee, answer phone calls, interface with customers, salesmen, technicians, etc.. At this point, I’m ready for a nap. And it’s maybe 10am. Continue daily activities, until 5pm, when the day is over. At this point, if I’m lucky, I have the energy to get in my car and drive home.

After arriving home each night, my furry-writing-buddies need to be walked, and fed. At this point, I’m lucky if I have the energy left to change clothes, make dinner, and do a few household chores before collapsing on the couch. And here I typically stay, until it’s time for bed. And then it all starts over again.

My questions for you, dear readers, is this: How do you explain to your friends WHY you can’t come out and play? I don’t know about you, but I would much prefer to go out, and have a good time, to being home, and exhausted all of the time.

Let me know in the comments, or on Twitter how you handle this particular situation.

As always, you are your own best advocate. If you do not stand up for yourself, who will?

Until next time,

Lina

Coming out of the fog…

Happy Weekend, all! It’s a beautiful day, so I felt that i should take this opportunity to write a quick update.

After only 2 weeks of Hydrea the side effects I was experiencing were worse than the symptoms of the disease. Not only that but my platelets had dropped from 880,000 to 552,000. After a discussion with the NP at my hem/onc’s office we decided that it would be best to stop the Hydrea for now. I am already starting to feel a little bit better. The nausea is subsiding, and the brain fog is lifting. I still feel it, but I can tell that it’s leaving.

I’m still not quite feeling like myself lately though. One of the problems I’ve been having lately, is what feels like a very swollen lymph node on the left side of my neck below my jaw. It has been very painful. It actually kept me up a lot Friday night. Turning my head, swallowing, even breathing was painful. I’m not sure what is causing it, but if it isn’t gone by Tuesday I will probably go see my GP about it. Other than that, nothing is really new. The spleen pain is still problematic, I still have a lot of headaches, and fatigue, but I’ll take those issues over constant nausea, and brain fog any day.

I will go for another CBC on Wednesday and we’ll see if anything has changed since last week.

Not much else to add at the moment, so I’ll end this here.

As always, you are your own best advocate. If you do not stand up for yourself, who will?

Until next time,

Lina

In a fog…

I’m sure we’ve all seen those commercials on TV advertising medications, and of course the list of potential “Rare But Serious” side effects. 

Hydrea is no different. It comes with side effects. Below is the list from the National Library of Medicine NIH Website.

Hydroxyurea may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:
  • nausea
  • vomiting
  • diarrhea
  • loss of appetite
  • weight gain
  • sores in the mouth and throat
  • constipation
  • rash
  • pale skin
  • dizziness
  • headache
  • hair loss
  • darkening of skin and nails
Some side effects can be serious. If you experience any of these symptoms or those listed in the IMPORTANT WARNING section, call your doctor immediately or get emergency medical treatment:
  • excessive tiredness or weakness
  • fast heartbeat
  • shortness of breath
  • ongoing pain that begins in the stomach area, but may spread to the back
  • pain, itching, redness, swelling, blisters, or sores on the skin
  • pain in the upper right part of the stomach
  • yellowing of the skin or eyes
  • flu-like symptoms
  • numbness, burning, or tingling in the hands or feet
  • difficult or painful urination
  • seizures

Since beginning my Hydrea regimen on 4/29/15, I have experienced several of the side effects listed above. Nausea, vomiting, headache, dizziness, mouth sores, and now hair loss. My vain side would like to say that the worst of these side effects is the hair loss. But in reality, the worst side effect I’m experiencing these days is actually one that isn’t even on the list. This side effect is associated with Antineoplastic/Cytotoxic/Chemotherapeutic treatments in general.

This side effect is a phenomenon known as Central Neurotoxicity. More commonly referred to as ChemoBrain. ChemoBrain causes confusion, cognitive problems, memory loss, disrupts balance, and movement, and can even cause seizures.

Recently I have found myself searching for simple nouns, unable to think of words. Such as…you know, that thing…with the wheels, the you put in your driveway…yeah. Car. That’s it. I have also been having trouble with numbers – for example: at work, each week I have to organize paperwork. Each page has an 8 digit number associated with it. It normally doesn’t take too terribly long to accomplish this task. This week however, it took me over an hour to put 60 tickets in numerical order. It was ridiculous. Normally that number of tickets should only take about 15 minutes, max. It took so long this week because I found myself being unable to remember the number of page in my hand, while I was looking through the tickets in the pile to figure out where it belonged.

I generally consider myself a relatively intelligent individual. Lately though, I am just so fuzzy headed, that I swear my IQ must have dropped several points in the last week or so. It’s almost like that feeling after you’ve had a couple glasses of wine, and you’re a little less sharp than you normally would be,only this is without the benefit of enjoying the wine. I am easily distracted, to the point where during the course of writing this blog today, I have started and stopped about 6 times. Speaking of writing this blog, I tried to start it several times this week, but i just couldn’t come up with the brain power to make myself sit down and write it. This morning, fueled with caffeine and motivation, it has taken me 2 hours to get to this point. I have had to stop, and consider my wording much harder than I normally would have to also. I caught several phrases throughout this entire post that just did not make sense. With that in mind, I do beg your forgiveness if this is oddly worded, or just pain doesn’t make sense.

I already expressed my displeasure at having to take this medication in my last post, but I have to admit that the PegIntron was no picnic either. The side effects of that were certainly not any more fun that what I’m experiencing right now. That leads me to ask: Why are there not more/better options for treatment? Why to the side effects of the drugs we take, often worse than the symptoms those drugs are supposed to be treating? Why should we have to choose between feeling like crap from our disease, or feeling a different type of crappy from the meds? This is another reason we need to increase #NIH funding! With better funding, comes more trials, comes better treatment for #Cancer.

OK, I’ll get off my soapbox for the moment. I think I’ve rambled enough in this post.

Remember, you are your own best advocate. If you don’t stand up for yourself, who will?

Until next time,

Lina

Challenge failure and medical update…

So, quite clearly I failed horribly at the HAWMC. I was hoping that I’d be able to manage it, but unfortunately it wasn’t meant to be. I’d like to say I have a good excuse for my challenge failure…but I really don’t. After working all day, by the time I’d get home, the only thing on my mind would be putting on PJs an relaxing. Pretty pathetic that I couldn’t even work up the energy to write a daily blog 😦 Ah well…enough of my failure. Now on to the medical updates.

I haven’t been feeling too great lately, my platelets have gone up quite a bit, I’m tired all the time, and my belly pain has increased a bit. I had an appointment with my hem/onc on Wednesday. My platelets are 880K, up from 820K at the end of March (normal range is 150-450K). My white counts and red counts are also on the higher side of normal. My ferritin is 50 at the moment, normal range is 11-307. So not terrible, but not great either. Could help to explain the fatigue.

So after discussing my current issues (Belly pain, headaches, bruising, fatigue, dizziness etc) with the new NP, she did a physical exam, had a nice little chat about our mutual disdain for migraines, and then she went out to get Doc. After going over everything, and talking about our options, Doc told me that he would be most comfortable with starting Hydroxyurea again. I expressed displeasure with that, but he bargained with me, and I finally agreed to try it for a few months.

My previous experience with hydroxyurea was less than successful. My blood counts were not very responsive to the drug, it took 2 grams/day before my platelet counts responded. When they did, it wasn’t just my platelets that went down. All of my blood counts came down with them. In addition to this, I basically had constant feelings of nausea, and headache. So you can see why I might be somewhat reluctant to get started with this again. We made a deal though. I agreed to take the meds for 2-3 months. I will go for a CBC to check progress every 3-4 weeks and if we don’t see progress at the end of the 2-3 months, then we will stop. Simple as that. The dosing will be 1 gram/day to start. If he sees fit to adjust it over the next 8-12 weeks, then we will do so. But if by the end of our little experiment it hasn’t worked, then I would like to start the PegIntron again. It was successful, lowered my platelets to a very reasonable level, and despite the side effects, I still felt fairly decent on it. With the Hydrea every day, I had a basically constant feeling of unwell. The PegIntron was at least MOSTLY on the weekends that I felt icky.

Now for some basic info on Hydroxyurea. Hydroxyurea is classified as an antineoplastic or cytotoxic medication (Chemo, if you like) It is known by several names: Hydroxyurea, Hydroxycarbamide, Hydrea, Droxea.or Mylocel. This drug is used to treat many things including but not limited to Essential Thrombocytosis, Polycythemia Vera, chronic myeloid leukemia, melanoma, and ovarian cancer. Side note; some of the warnings on this med indicate that the use of it could eventually lead to acute myelogenous leukemia. Yet oddly enough it is also used to treat leukemia. Weird. Hydroxyurea is very toxic, and should NEVER be taken by pregnant women, heck, the bottle even says pregnant women shouldn’t TOUCH the medicine, much less take it. 20150503_135055 See?

Those warnings really make you want to swallow these suckers, doesn’t it? 20150503_135135

OK, I’ve whined/Vented enough. Now I think I’ll continue enjoying this delightful weather with M, and my two furry writing buddies. I hope you are all having a good Sunday!

Remember, you are your own best advocate. If you do not stand up for yourself, who will?

Until next time,

Lina

#HAWMC Day 5 – BREAKING NEWS!!!

Today I’m supposed to be writing about my proudest accomplishment from the last 5 years. This a tough one, because as a blogger I already share a lot about myself with you all. I’ve told you about the NORD Patient Meeting, and the  OVAC event from last summer, I told you when I got married (It will be three years on April 14th! Crazy!).

I guess there isn’t really a whole lot of “Breaking News” at this point – you’ve been with me through a lot! You’ve seen me fight to get to use PegIntron, you suffered through the side effects with me, we’ve learned about treatments together, you’ve listened to me complain about migraines, and about my spleen.

My Breaking News is that – I’ve come to the realization just how much I appreciate my readers! You are extremely important to me. You help me through tough times, you share stories with me, give advice. I cannot begin to express how lucky and thankful I am to have you.

As always, you are your own best advocate. If you do not stand up for yourself, who will?

Up next, #HAWMC Day 6 – Your Hero!

Until next time,

Lina