Should I be Scared?

(I promise the title of this entry will make sense eventually…)

So this past Wednesday I had the privilege of attending the Chicagoland MPN Patient Support Meeting. (Thank goodness for understanding bosses, who let you off at the {relatively} last minute, and an awesome mama who made the trip with me! Woohoo!) This entry will probably be somewhat haphazard and disorganized…but I’ll try to keep it logical 🙂

Since there is nothing like this around where I live, I had absolutely no idea what to expect going in. Honestly, I was kind of expecting a rehearsed spiel about the family of diseases and generally how they are treated, then maybe the speaker would open the floor to questions… I happily found out that I was totally wrong.

Dr. Stein gave a short intro about himself, and then opened the floor to questions from the group. He took time answering all of our questions as thoroughly as possible, was extremely engaging, informative, friendly, patient with all of us and generally awesome! I’ll go over the questions that were asked shortly, but I HAVE to rave about how wonderful Dr. Stein is.

So, I went to Chicago 2 years ago to see him at Northwestern when I was having trouble with my doc/treatment here at home. I wanted to get a 2nd opinion and fresh eye on my things at the time. Northwestern is a large facility, and I’m sure Dr. Stein sees hundreds of people a year. After he was done speaking at the meeting Wednesday night, I went up to ask him one last question, and to thank him for speaking with us. Before answering my question he says “You came to see me, didn’t you? Two summers ago? You were there with your husband, right?” He remembered me. Remembered why I was there to see him, what we talked about, and who I was with, heck…he even remembered my e-mail background. That is amazing to me. With everything he does, the committees he is on, the meetings he attends, the patients he sees, and still has the ability to remember little details about people he has seen ONCE 2 years ago…I have no idea how he does it. But I was extremely impressed. If anyone is looking for a Hem/Onc in the upper Midwest, I highly recommend him!

Now, on to the questions, I’ll try to remember all of them…there were a lot…and I did take notes…but I may miss some.

1) Jakafi. How’s it doing/results? He gave a general rundown of its performance, as he has seen so far: about 50% of patients have shown spleen shrinkage with use of Jakafi, which…for those of us with large spleens, that sounds awesome. It also does seem to relieve fatigue, itching, sweats and pain. On the down side, the blood counts do seem to drop some initially, but they generally rebound fairly well.

2) Risk of blood clots? With ET and PV, typically we think about platelets being the big cause, but we should also look at white count too. Apparently a high white count can also contribute to blood clots.

3) Disease progression? For ET patients, the risk of progression to MF goes up to 10% after 15 years. With PV I believe it was 15%.

4) One of the people in the audience is approaching the possibility of stem cell transplant, and Dr. Stein addressed some concerns: A transplant is a very high risk, but high reward procedure. Even though it is the only “cure” for any of these conditions, it is NOT recommended for ET/PV patients at the moment, only MF. The timing of a transplant is very difficult. At this point it is a very reactive procedure, as opposed to proactive. You do not want to do it too early, or too late, but finding that perfect time can be a challenge. There are 4 scales used to help determine the viability of a transplant. Apparently one of the things that helps blood cells rebound after transplant is a smaller spleen, which could explain why potential transplant patients are often prescribed Jakafi prior to the procedure.

5) Bone Marrow Biopsies? PV patients do not require a BMB for diagnosis. ET and MF however do. As for frequency of BMBs, that varies based on blood counts, direction the disease seems to be going, and doctor’s preference, really.

6) Fatigue? This is the enemy of all MPN patients. Fatigue is a symptom of the diseases, but it can also be a side effect of treatment. If you get to the point that your life is being disrupted by your fatigue (one of the guests at the meeting said they recently had to resign from their job due to their level of fatigue!), Dr. Stein recommends seeking other treatment options. Also…whole body wellness is hugely important. It is a viscous cycle though, and I don’t know about the rest of you, but when I’m tired/hurting/feeling blah the last thing on my mind is getting out to the gym/going for a walk/exercising/whatever. Consciously I know that if I get up and move I will feel better, and have more energy, but it’s really hard to make yourself do that.

Now…on to explaining the title of my entry. One of the patients who was there asked something along the lines of “So…I’ve read a lot about this thing, and a lot of it is very doom and gloom…Should I be scared?” This question really stood out to me. You may have noticed while reading my blog that I am one of those annoyingly assertive patients who wants to know everything about my disease/treatment…I realize that not everyone is like this. But I really feel that you are doing yourself a disservice to not at least understand the basics of your disease. That does NOT mean you should jump online and rely on google to teach you what you need to know. There are a lot of really scary things that can happen with these diseases. I could end up with Leukemia, I could have to have a stem cell transplant, I could get a blood clot, have a stroke etc etc. Here’s the thing though…I could step of a curb and get hit by a bus too. If I read/believed everything I see online or in statistics I would never leave the house. Should I be scared? No. Should I be occasionally cautious and conscious of the potential issues, absolutely. I am not a doctor, I am not offering medical advice in any way, shape, or form. However: I strongly recommend living your life as fully as you possibly can. Don’t worry about things that MIGHT happen. Go with the flow, deal with the real issues as the present themselves, but don’t go borrowing trouble where it may not even exist.

All in all this meeting was fabulous, and I am so thankful I got to attend! I am going to be talking with MPN Research Foundation to try and find out how to form a support group locally…I’ll update more on that as it happens 🙂 Ok…I think I’m done blathering now, I hope that made sense as it tumbled out of my brain lol

I know I say this all the time, but 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?



Chicago, here I come!

Soooo…..I’m pretty excited about this….Next week I’ll be taking a couple of days off and going to Chicago for the Chicagoland Patient Support Group meeting. Dr. Brady Stein (The doctor I went up to Chicago to see two summers ago) will be the speaker, which is exciting. 🙂 Is anyone else attending? Has anyone else attended in the past? Pros? Cons? Likes? Dislikes? Experiences in general? (I’m planning on tweeting from the meeting, and there will definitely be a new blog afterwards, hopefully with pictures and possibly video from Dr. Stein’s talk. )

I’ve never been to a patient support group, so I’m pretty excited to check it out. I wish there were one closer to home…I’ll have to look into it and see what it takes to organize a support group…I’m not sure what the interest would be around here, but I’ll certainly try to find out

Ordinarily this would be something my hubby and I would be attending together, however M recently changed jobs, and unfortunately does not have time off yet, so he can’t come with me. However…my awesome mama will be joining me for the road trip. This should be a lot of fun!

Switching gears a bit now….

Something I’ve been meaning to talk about here is one of the lovely “perks” that comes along with being a part of the “reluctant members’ club” as I like to call it. Visiting the vampires. Getting stuck. CBCs. Routine blood draws. Whatever you’d like to call it…we all do it. I’m curious if anyone else’s experiences have been similar to mine. My health insurance only covers routine blood work if it is done by one particular national chain of free-standing labs. Procedure at the lab I go to is that the first thing you do when your name is called is hand over your insurance card to be scanned into their system. My health insurance company changed a couple of years ago, and right after the change I brought my new card with me, submitted it to the tech, it was scanned in, and the old insurance info was, theoretically, deleted. Now, call me crazy…but I would think that after the new insurance card is in the system, and the old had been deleted that the new info would always be there? Yet for some reason…this particular lab repeatedly sent the charges to my OLD insurance company. Which, of course, denied the claim. Resulting in my being billed. Repeatedly. It took a lot of phone calls, being trapped in automated-purgatory for a while, but it finally got straightened out. But that’s just the start of the issues I have had with these places…

Because I’m a frequent visitor, my doc always gives me a prescripton for a standing order at the lab, which is on file and valid for 6 months at a time. You’d thik that would be simple to deal with. Walk in, tell them you have a standing order for a CBC/CMP and move on. But…apparently that’s not the case. On one particular day I walked in, gave the nice lady my insurance card, inform her that I had a new standing order for more frequent draws, replacing the one that is already in her computer, and had her the paperwork. She directs me to a room. I sit down and wait for her to come in. When she finally does, she starts asking me why her system had 2 different addresses on file for my doctor, and asked which account number we use normally…She didn’t seem to understand why I thought it was strange of her to be asking ME, the patient, which of the lab-assigned account numbers they should be using. She then told me that I should hold on to the new paperwork for my new standing order. I had to explain to her 3 times why we had a new one. She looked at me skeptically and said “OK…if you’re sure”. My appointment was for 11:45…by the time she actually started to draw my blood it was 12:15. We spent 30 minutes going back and forth about clerical stuff that should all be in their computer already…When she finally actually drew my blood I had to spend another few minutes convincing her that the vein I was pointing at was indeed a good one, and she did NOT have to try my hand. “No…this one doesn’t feel right…but the ones in your hand are visible. They’ll be easier to stick”. No. Just no. You don’t draw from hands. That’s just unnecessarily painful. She finally decides to try where I’ve pointed and says “OH…there it is….”, stabs the too-large-gauge needle in, and promptly blows thru the vein. Backed up, got the return on the needle, and finished up. After, she says “Hey…could you go online and review your experience with us today? I’d really appreciate a good review.” Seriously? Think about that for a moment. Not gonna happen.

Just another example of needing to be an assertive patient, and stand your ground. Don’t let anyone make you doubt yourself. Not ever.

I’m off for now, but I’ll write more later! Hopefully before the Chicago promises though lol.

Lina (aka The Prodigal Poster)