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

The importance of being a partner in your own health care.

Hello ladies and gents. You may have noticed that I didn’t post last weekend…I apologize for that. I was not feeling very well at all, and just didn’t have the energy to get off my rear and get to my computer to type anything. This was a treatment weekend and as usual, I’m feeling pretty crummy…but I’m only a day late on posting, so I’m going to call that a win!

I’d like to talk a little bit about something I had intended to address during blood cancer awareness month, but didn’t get to…due to my slacking off toward the end of the month.  But anywho…here goes.

I know I talk a lot about being assertive about your healthcare, and I also realize that this is not easy for everyone. Doctors are our caregivers, and are trusted to have our best interests at heart. Now don’t get me wrong I have the utmost respect for doctors, and I realize that doctors went to school for many many years, and learned, and trained, and tested to study/translate data and treat diseases. Sometimes it seems that it can be difficult for doctors to see past that data and to the person that they are treating. This is why it is so important to be a partner in your health care; to be involved and informed about yourself, your progress, and the data that your doctor is watching so closely.  This makes it easier as a patient to know when something isn’t right. When something isn’t right, even when the data doesn’t show that, it is important for a patient to be willing to inform the doctor/health team about it. I personally feel that if you don’t feel that you’re being heard, then you need to keep trying. You are the one feeling the way you do. You have the aches, the pains, the general feeling of something just not being right. No one else is going to feel it for you. If you feel that something is wrong, it is up to you to make it known to the people in charge of your health care. 

As I have said many times before, you are your own best advocate. If you don’t take care of yourself, and stand up for what you feel you need, who will?

That is the end of my lecture now 🙂 I hope you are all having a good weekend, and are all feeling well!

Until next Saturday,

Lina

Blood Cancer Awareness Post 17: Blood Cancer Resources

Today we’ll be talking about blood cancer resources. While there are many, we will be focusing on a few of the big online resources.

First, and my personal favorite: The MPN Research Foundation. Here you can learn more about each Myeloproliferative Neoplasm, find treatment options, patient stories, research studies, and support groups.

Next up is The American Society of Hematology. Here you can find information on ASH meetings, terminology, news, research, and patient resources.

Next is  The American Cancer Society, where you can find information on pretty much all known cancers, health tips, support and treatment resources, available research info, and volunteer opportunities.

Another good one is The Leukemia and Lymphoma Society. Here you can find Disease information, donation opportunities, research and local branch offices

This is only a brief list of resources, but they are very reliable, and contain very good information. i would recommend that when looking for disease information, that you start with these places. They are very comprehensive sources of information.

Tomorrow we will be deviating from my original outline, because I feel compelled to make a post about fatigue. Fatigue is a HUGE problem for MPN Patients, and many other patients as well…but I think I need to post this one asap given some recent experiences I’ve had.

Until tomorrow,

Lina

Blood Cancer Awareness Post 14: Polycythemia Vera

Yesterday we started talking about MPNs, just a general overview. Today we will be talking about Polycthemia Vera, or PV. This is again a re-post from earlier.

What is PV?

You may remember in my last issue regarding MPNs as a whole, over the next few weeks I plan on breaking down each of the 3 main MPNs (PV, ET, and MF).

 I will start with Polycythemia Vera(we will be addressing Primary Polycythemia).

PolyCythemia Vera

Poly-Greek for many

Cythemia(Made up of 2 words) Kytos – Greek word meaning Cell and

Haima – Greek word meaning Blood.

Vera – From the word Verus, meaning true.

To sum that up: Many blood cells floating around in the blood stream.

PV affects all of the hematopoietic bone marrow elements, meaning all the blood cells produced in the marrow are increased. This can lead to a variety of different issues and symptoms including, but not limited to headaches, itching(unique to PV), dizziness, abdominal pain(due to enlarged spleen or possibly liver) increased risk of blood clots, and stroke.

As I said in the issue before, each of these MPNs can be very difficult to diagnose, as the symptoms can be difficult to pinpoint, and often lend themselves easily to a variety of diseases. I think I will go through and answer the same some of the same questions as in the first entry, applying them to PV.

How are you diagnosed with that disease/condition/thing?

How do they treat it?

When will it be cured?

As with most MPNs, PV can often be discovered after some other event/illness/diagnosis. Regardless of how the disease is initially discovered, there are several criteria that must be present to help verify which MPN you are dealing with. Most commonly diagnosis happens after a series of blood tests; Complete Blood Count (CBC), Comprehensive Metabolic Panel (CMP), and often Bone Marrow Biopsy (BMB). What the doctor is looking for in aCBCis an abnormal increase in blood cell amounts. Red cells, white cells, platelets, everything. With a BMB your doctor will be looking at bone marrow abnormalities and genetic markers in the marrow.

Treatment for PV varies by patient. Treatment ranges from watch and wait, or phlebotomy, to prescription medications like Hydroxyurea or Anagrelide(More common for ET patients, but  PV can take it as well). Phlebotomy is basically blood letting. When counts get too high, a patient will go to the clinic, and a unit or so of blood will be removed from their body, thus lowering blood counts.

As for a cure, this is the same as with any MPN. There is no “cure” per se. The disease can be managed thru treatment, and some can live a relatively normal life with little to no interference from the disease. However, since every patient is different, everyone will experience a different set of symptoms of the disease.

I do not claim to know all there is to know about ANY myeloproliferative neoplasm for that matter…. I am sure that I missed something here, but this is just my general understanding, and the way I would explain it to someone who knew nothing about PV. I would like to take this opportunity to invite PV patients to add to this. Particularly things like “What do you wish you had known at diagnosis that no one told you?”

Tomorrow we will be talking about Essential Thrombocytosis (ET)

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