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

Living Well with MPNs Review/Recap plus a personal revelation

Hello there, dear readers. I hope you are all having a wonderful week 🙂 The weather here is unseasonably cool, so I’m taking full advantage of it, and writing outside with my wonderful writing buddy, Tesla! (This note is from when I started this blog last weekend lol)

I’d like to start this entry by talking about last weekend. M and I had a fantastic time in Chicago. I was so thrilled that he was able to come with me to the Living well with MPNs meeting!! Firstly I’d like to thank the MPN Research Foundation, and Patient Power for putting on this wonderful event! I was so very grateful to be able to join everyone there. One thing I was surprised by was that it was completely free! The day started at 9:45, they offered breakfast, there were several groups set up with tables, and information. I am going to say right now, that unfortunately my day began with a pretty terrible migraine. My husband and I walked from our hotel to Northwestern’s campus, and just as we arrived in the lobby and got situated, it began. The aura and the pain were terrible for about the first 2 hours of the day, so I was unable to interact with the groups out in the lobby 😦 Hopefully someone who may have been there will have gotten information from the groups that they would be willing to share with me!

As we were called in to the auditorium, everyone seemed a little bit nervous. Kind of like walking into a lecture hall for the first time in college…people mostly kept to themselves at first, and weren’t really interacting just yet. But then as the speaker, Jeff Folloder began to ask questions, and we all started to notice one another nodding along with the responses, and we (at least I) realized that these people were all just like me…we (I) began to warm up a bit 🙂 (I’m referring back to my notes just now, but I’m sure I’m going to miss a few things…I’ll link to the videos on Patient Power’s website as soon as they are posted though 🙂 )

One of the questions that seemed to be a hotly contested issue was the question of age as it relates to the treatment of patients. It would seem that the general consensus USED to be that, for some reason as soon as a patient turned 60, they became significantly higher risk. The implication from the experts (Dr. Brady Stein, and Dr. Alison Moliterno) is that age does not really correlate with ones risk as strongly as the medical community used to think. It is more an issue of whether you have a history of thrombotic events, or heart disease, or other issues that may not mix terribly well with an increased risk of clotting. You could be 79 and have the blood vessels of a teenager, or be in your 30s with the circulatory system of a 90 year old. It really varies by patient.

What made me happiest was how many times I heard the doctors talk about advocating for yourself, and being assertive. I was so, so happy to hear it. It is so very true, and I feel so strongly about it.

The Patient Power event was extremely educational, and I am so thankful that I was able to go.

Personal Revelation:

One of the things that was spoken about a lot was the “itching” and “burning” symptoms in PV/ET patients. I’ve never really thought about it before…but apparently not everyone actually experiencing burning/tingling/itching in their extremities when they take a hot bath/shower. I never really considered it a symptom. For 9 years I completely ignored one of the most complained about symptoms in the MPN world (other than fatigue, that is…). I cannot begin to tell you how dumb I felt when I realized that. lol. It just never occurred to me that it was a symptom of my disease.


 

I’ve got a lot more to say on the subject, but I’m going to head off to continue to prepare for this Saturday in San Antonio! Are any of you going? Do you know anyone that’s going? Please share this with anyone you think might be going! I hope to see you all there! Wish me luck, please 🙂

As always, you are your own best advocate. if you do not take care of yourself, who will?

Thank you!

Until next time,

Lina