FINALLY!

Just a quick little blog for right now…

I finally heard back from the NP at my Hem/Onc’s office. She agrees that it is probably time for another BMB. She hadn’t realized it has been 9 years since the last one. As for the way I’ve been feeling, she didn’t really have a whole lot to say on that. My next appointment is 8/20, so I’ll talk to the doc about it all, and pick his brain for a while. At the same appointment we’re going to schedule the BMB.

I also spoke with her about getting tested for the CAL-R mutation, so she is going to put in the order for me for my appointment in August. I’m pretty curious to see the results of that. 

Are any of you CAL-R positive?

What about Jak2?

Remember to be assertive!

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

Until next time,

Lina

OVAC Lobby Day Review

OVAC Lobby Day: 7/7-7/8

This may be a little haphazard, but I’ll try to keep it somewhat organized.

The OVAC Lobby Days took place Monday July 7th and Tuesday July 8th. This is the first time I’ve done any type of lobbying, and was therefore an overwhelming, educational, terrifying, overall exhilarating experience.

OVAC, One Voice Against Cancer is a collaboration of non-profit organizations working together to try to find cures for cancer. OVAC has representatives from all across the country, every walk of life, all cancers. We all spoke of our personal experiences, which are very different, but our goal was the same, so we truly were speaking against cancer with One Voice. There’s something oddly uniting about the subject of cancer. We all know someone who has been touched by it in some way. Each of us at the event had our own personal connection to cancer. That is what brought us together.

Monday started with registration, and for me, a sort of awkward wandering around in the lobby until a few of us got to talking. The ladies I befriended in the lobby each shared their own personal stories. One of the ladies told me about her mother who had bladder cancer. Luckily she had responded to treatment, and is doing quite well now, but the experience is what inspired her to become an activist for BCAN (Bladder Cancer Advocacy Network)The other young lady I had the privilege to meet had very recently lost her sister to brain cancer. The pain was still so visibly fresh for her, and I admire her so much for having the strength to join the Brain Tumor association and tell her sister’s story.

After getting to know one another we went in to begin our training. OVAC Lobby Day 2014: Training DayThere were 88 participants from 30 states, and I’d say about 1/2 of us are newbies, so I was not completely alone 🙂 During training we were given 3 very specific goals, or asks; the end goal is of course making cancer research and prevention a top priority, thereby finding better treatment options, and hopefully cures. Specifically though we were asking for 1) $5.26 billion to be provided for the National Cancer Institute (NCI) 2) to ensure a proportional increase to NCI’s funding when there is an increase in the NIH’s funding, and 3) $510 million to be budgeted for the CDC Division of Cancer Prevention and Control.

These are pretty big things to be asking for, and pretty intimidating to be asking political leaders for them. But who else should we speak to other than the people with the power to help make the changes we are asking for? To speak to the decision makers, to tell them what their constituents want, and need; that is why we were there.

It was stressed to us during training that making a connection with the representative, congressperson, or staffer is a good way to start. Tell them where you’re from; down to the street or the neighborhood, then tell your story. Grab their attention; remind them where they are from. If you can make an emotional connection with them then tell them your story, then hopefully they will remember you better.

So with the goal of being remembered in mind, I plotted out a few ideas for the following day. Knowing that my nerves may get the better of me, I decided that it may be best for me to focus on the emotional aspect of our presentations. I’ve always been a nervous test-taker, and to me trying to remember the facts and figures felt very much like a test. I often get tongue tied when put on the spot, but I knew there were certain facts I knew I’d get right. I decided to focus on my story; when I was diagnosed, what my disease is, the treatment options available, and also the cost of said treatments.

I was in a very small delegation from my state. VERY. SMALL. There were only two of us. So our meetings were rather short. 20140712_140034We started the day on the senate side of the Capitol. 20140712_140114We met with a staffer from Senator McCaskill’s office, and from Senator Blunt’s office. After the meeting with Senator Blunt’s office, we had lunch, then headed over to the House side. 20140712_140123There we had a meeting with Ann Wagner (My state Representative) and a staffer from Sam Graves’ office (my fellow Missourian’s representative) All of the presentations on Tuesday, while brief were very meaningful.

gravois-20120210-00130My favorite part of the presentation is when I would start telling them about PegIntron, the medication that I have had the most success with. At this point I would pull out the box of meds that I brought with me, place it on the table in front of me and say “This drug is not yet FDA approved for use in MPN patients. I have been denied 3 times by my insurance company on the grounds that my purposes are “off label”.  This box costs $2000. It contains ONE dose of medicine. I take this once a week. That’s $104,000 per year for however many years I’m lucky enough to remain alive.” That tended to leave a strong impression on the folks I was speaking to. And then I would start to work in the asks. “With better funding for research, better treatments could potentially be approved for patients. More accessible treatments, mean healthier, more productive constituents.”

 While I was the only person I know of that was there representing MPNs, I am hoping that my presentation was memorable, not just to our elected officials, but also to the other participants. Just about everyone I spoke to had never heard of MPNs. So I’d like to think that I helped educate some other members of the cancer community.

I’m realizing now that I’ve done an awful lot of rambling, so I will leave you for now 🙂 Tomorrow I’ll be posting the mind-body techniques I referenced in my last post!

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

Until next time,

Lina

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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

Blood Cancer Awareness Post 5: White Blood Cells

Yesterday we talked about red blood cells, and today we will talk about white blood cells. 

whitecells

White blood cells, or leukocytes are the cells of the immune system. They are what helps your body to fight infection and foreign matter.

The most common type of white cell is the Neutrophil. Neutrophils live in the body less than a day, so your bone marrow is constantly making them to protect you from infection. Neutrophils are the first responders for microbial infections. High numbers of neutrophils are seen early in the onset of infection.

The next most common type of white cell are Lymphocytes. There are two main types of Lymphocytes. T Lymphocytes (or t-cells), which help regulate the function of other immune cells, and B Lymphocytes (or b-cells) which make antibodies. Antibodies are the proteins  that target bacteria, viruses and other foreign matter in the body.

The final three types of white blood cells are monocytes, eosinophils and basophils.

Monocytes have longer life spans than neutrophils, and are responsible for presenting pieces of pathogens to t-cells so that they will be recognized later.

Eosinophils deal mainly with parasitic infections. You also see large numbers of eosinophils during times of allergic reactions such as hay fever, or hives.

Basophils are also present during times of allergic reactions and are responsible for releasing the chemical histamine.

This is just a very brief overview of the general function of white cells, and their jobs. We will talk more about them as we get more into blood cancers later in the month!

Tomorrow we’ll be talking about my personal favorite blood cells, platelets!

Until tomorrow,

Lina

Blood Cancer Awareness Post 4: Red Blood Cells

Yesterday we discussed Blood Plasma, today we will talk about Red Blood Cells.

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Red Blood Cells, (RBCs) also called erythrocytes, are the most common type of blood cell. Like all of our blood cells, RBCs originate in the bone marrow. They are flexible, oval shaped cells which carry oxygen and CO2 around the body. Hemoglobin, an iron rich protein, is what makes carrying oxygen through the body possible. It is also what makes your blood red. Hematocrit, is the percentage of whole blood that is made up of RBCs.

The production of RBCs is triggered by a hormone which is produced in the kidneys. This hormone tells your bone marrow to produce immature RBCs, which then spend about 7 days, maturing in the marrow. After they are matured, RBCs spend about 120 days in the system.

There is a delicate balance to all blood cells in the body, each type of cell has a proper range. When these ranges get out of whack, that’s when issues arise. Below is the averages used by my lab for each different blood component. Later we’ll go into more detail on what to pay attention to on a CBC.

blood counts

That is all for today, tomorrow we’ll be talking about White Blood Cells!

Until Tomorrow,

Lina

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?

Thanks,

Lina