(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?
Thanks,
Lina
The Life of a Vaguely Neurotic MPN Patient 