Tuesday, November 15, 2011

The Traffic Jam Within: A Primer on Blood Clots and Thrombosis

The 6th Annual International MPN Patient Symposium began with Dr. Babette Weksler giving us a fascinating overview on the invisible threat to people living with Polycythemia Vera (PV) and Essential Thrombocythemia (ET):  thrombosis.

Dr. Weksler is with the Weill Cornell Medical College and Center.  She has studied and treated patients with thrombosis for over 35 years.  Dr. Weksler focuses on diseases of platelets, bleeding and thrombotic disorders, sickle cell anemia, and immunologically mediated blood disorders.  She is a teacher, researcher, and clinician.

This article includes some blood basics along with the specialized information provided by Dr. Weksler.

We all have arteries, which flow blood from the heart to the rest of the body and veins, which return blood from various organs and parts of the body back to the heart.

There are “major” (large) and “minor” (smaller) veins and arteries throughout the body system.  There are also capillaries (very small passageways) for blood to move through the system.

Remember, the blood clotting function is necessary for us to heal wounds and prevent excessive bleeding.  Thrombosis is when the blood clotting function works against the body’s interest (also called “dis-regulated clotting”).   A thrombosis can fill a vein or artery and prevent blood from flowing to its intended destination.  This causes blood to back up, organs to suffer, and often end life as we know it.  This happened to me;  the cascade of problems from three blocked veins is now legendary in my family.

Sometimes a clot gets pushed from where it formed to an organ; this is called an “embolism.”  An “embolism” is an obstruction of a blood vessel (typically a blood clot) that travels through the bloodstream and lodges, resulting in loss of blood flow.  The embolus could be a blood clot, fat mass, air bubble, or other mass.  The most common is a blood clot in the leg gets pushed up into a lung and causes trauma or

So... clots are good;  thromboses are bad.

An “aneurism” is when the wall of a blood vessel (vein or artery) bulges out and weakens.

Anatomy of a Blood Clot:
The clotting function produces fibrin strands, creating a mesh;  then platelets contribute to clot initiation and firmness of the mesh.  Red blood cells get trapped in the mesh and give the clot bulk.

Dr. Weksler explained that the clots in MPN patients are different from blood-healthy patients.  People with MPNs experience thrombosis due to their blood composition and abnormal functioning of the blood, endothelium, and platelets.

Hemostasis is limited clotting that preserves the integrity of blood vessels and maintains normal blood circulation.  It is important to maintain the vascular integrity (healthy blood vessels) and normal blood flow despite continual minor injuries.

High hemoglobin (Hb) in Polycythemia Vera leads to high blood viscosity (thickness), which slows blood flow and leads to thrombosis.  Think about a milkshake going through a straw compared to water).  If the milkshake contains small bits of fruit, it can get clogged in the straw.

The abnormal vessel wall favors thrombosis and blocks clot dissolution.  If the vascular integrity is compromised (blood vessels are weak or damaged) the risk for clots and thrombosis is increased.

Blood clots and thrombosis are frequent in Polycythemia Vera (PV) and Essential Thrombocythemia (ET).
They occur in both veins and arteries, and in large and small vessels.  Clots and thrombosis are major contributors to morbidity (death) for MPN patients.

Interesting note:   Both clots and excessive bleeding may occur in the same person at the same time or different times.

The Why:  Pathophysiology of Thrombosis in MPNs
It is generally understood that when blood stops moving, it clots.  For example, in Polycythemia Vera, a high red blood cell count (seen in high hematocrit) can block small vessels and slow blood flow.  Did you know there are other causes?  I didn’t.

Dr. Weksler offered the clearest explanation I’ve heard of the many ways MPNers experience clots.
There are four different causes of Blood Clots:

1. Endothelial Activation
The endothelial cells line the veins and arteries.  They issue commands to the blood elements and certain organs.  With MPNers, the endothelial cells may shift from non-reactive/anti-thrombotic to pro-thrombotic surface properties.

2. Platelet Activation
Sometimes platelets are activated for enhanced adhesion, aggregation, secretion.  The platelets then gather together and form a clot mesh that catches RBCs that try to flow through the vessel.

3. Blood Coagulation
The blood can initiate the clot when its viscosity (thickness) is increased and thereby slows the flow.  The thick blood can also cause increased thrombin generation and fibrin formation, causing clot formation.
Blood coagulation can also cause decreased fibrinolysis (the body's natural way to break down clots).

4. Red Blood Cells
The RBCs also sometimes push platelets to sides of blood vessels where platelets can interact with vascular endothelial cells.  The RBCs trigger the response by the platelets and endothelial cells.   This can cause microscopic clotting of the platelets.

Dr. Weksler also discussed several differences between Arterial and Venous thrombosis:

Arterial (arteries – taking clean blood from the heart to the body) thrombosis:
Arteries are the fast flow system.
Endothelial injury key
Platelets initiate when activated
“White clots”
Primary preventive treatment:  Antiplatelet therapy (e.g., aspirin)

When the platelet count is over 1 million or 1.5 million, it promotes bleeding:
Acquired von Willebrand (vWD)
These platelets absorb von Willebrand factor, an important clotting factor, resulting in mucosal bleeds.

Venous (veins – taking “used” blood from the body to the heart) thrombosis:
Veins are a slow flow system
Venous stasis key
Fibrin formation mainly;  platelets less involved
“Red clots”
Primary preventive treatment:  Anticoagulant therapy mainstay  (e.g., warfarin)

What are the chances I’ll experience thrombosis?
If you meet any of the following criteria, you are at higher risk for a thrombosis than the general population:
Advanced age (>65 years of age)
Control of MPN anti thrombosis with medication
Prior Thrombosis
JAK2 mutation burden *
Acquired risk factors:  hypertension, high cholesterol, smoking, diabetes, CV disease
Inherited thrombophilia

Persons with Polycythemia Vera have a 33% risk of a major thrombotic event.
Persons with Essential Thrombocythemia have a 17% risk of a major thrombotic event.

*  The JAK2 mutation burden affects thrombosis in MPN patients due to:
1. More immature and activated platelets
2. Higher numbers of activated WBC
3. More RBC precursors capable of epo-independent growth

Interesting Note: In Essential Thrombocythemia (ET), the presence of JAK2 mutation increases the risk of arterial thrombosis.

Platelet-Leukocyte aggregates and micro-particles promote thrombosis.  The different kinds of cells can act together to promote thrombosis.

To reduce the risk of a thrombotic event, MPN patients should lower the hematocrit (HCT) to normal (men <45%, women 42%).  This decreases blood viscosity.
Note:  If one only lowers platelet count, thrombosis may still be a risk.  

Role of Various Drugs with Thrombosis (clots):
Hydrea inhibits Tissue Factor expression, decreases platelet-leukocyte aggregates, and decreases the immature platelets
Aspirin relieves erythromelalgia (excessive dilation of blood vessels of feet or hands)
Interferon preferentially decreases JAK2+clones
To date, JAK2 inhibitors have not decreased thrombosis

For those of us taking warfarin (Coumadin), Dr. Weksler said that the newer anti-coagulants are “not there yet”.  Some patients have tried Pradaxa and gone back to warfarin.  Pradaxa must be taken twice a day consistently and this is problematic for many patients.  She believes that we’ll have a better alternative in a few years.

Here are my take-aways:
  1. There are several different ways our blood may clot and then thrombose (sounds grandiose, doesn't it?!).
  2. Aspirin reduces one kind of risk (arterial clots). 
  3. Warfarin/Coumadin reduces another kind of risk (venous clots).
  4. Hydrea reduces yet another kind of risk (platelet-leukocyte aggregates).
  5. All the preventive treatments must be closely monitored by your physician.  If the blood levels get out of whack (CBC and for those on warfarin, the INR), thrombosis can occur.  
  6. It is possible to suffer from a thrombosis AND internal bleeding at the same time.
  7. PVers and ETers have different blood thrombosis challenges.
  8. Women's hematocrit should be at or below 42%.
  9. Men's hematocrit should be at or below 45%.
  10. Endothelial cells can influence the blood that flows through the blood vessels.  This is a leading edge in study.
I am grateful for those with healthy blood who donate regularly.  Our MPN blood, when taken out by phlebotomy/venesection, can not be shared with others;  thanks to Dr. Weksler, I understand why.

Wednesday, November 02, 2011

A Few Quick Thoughts from the MPN Patient Symposium

I just got back home from the whirlwind trip to New York City for the 6th International Patient MPN Symposium sponsored by the MPN Research Foundation and the Cancer Research & Treatment Fund.  The day was filled with fascinating speakers (several of whom were new to me) and each of them taught me something new.

I'll organize the 25 pages of notes later, but I thought I'd tempt you with these nuggets. :)

Cool Terms I Picked up at the MPN Patient Symposium

Somatic mutation:  a change in a gene that occurs after birth (you aren’t born that way)

Molecular mimicry:  some genes mimic others

Epigenome:  the new area for research

We are all entitled to our own opinions, but not our own facts.

JAK2 and Exon 12 and TET2 – a few of many mutations under exploration

Genomic Instability:  affects the micro environment and what happens with MPNs

Specialized Niche Cell:  cells that are highly specialized (example:  Endothelial cells)

Endothelial cells:   lining of blood vessels;  they also instruct other cells and broadcast directions throughout the body.  They also instruct organ regeneration (eg, liver and lungs). 

Inductive angiogenesis:   uh, i forgot already!

Proliferative angiogenesis:   forgot this one, too!

Role of vascular niche cells in self-renewal of stem and tumor cells:
The micro environment that are created by the mutations have huge impact on what happens. 

Angiocrine Factors                

Niche cell:  activate endothelial cells

Leukemic initiating cells – they expand the vasculature in the bone marrow.

Factoids and A-Ha’s! 
  • Platelet-Leukocyte aggregates and micro-particles promote thrombosis.  The different kinds of cells can act together to promote thrombosis. 
  • We need drugs that target the endothelial cells.   Endothelial cells expand hematopoietic stem and progenitor cells by angiocrine expression of Notch ligands.
  • The first hematopoiesis occurs with the endothelium. 
  • The leukemia from MPNs is completely different from the normal leukemias.  We need different treatments because the biology is different.
  • The Chronic Myeloid Leukemia is triggered by the Philadelphia chromosome, so it is regarded as a different disease process from MPNs.
  • JAK2 is not a “switch” that can be flipped on or off; it has at least 10 different mutations, which cause different disease results in patients.

JAK2:  The One Mutation, Three Diseases problem.
Why do patients develop ET, PV, or PMF?
Level of JAK2 allele burden determine ET, PV or PMF – more so in men than women
How much is the disease versus the host predisposition to develop an MPN?
Are there other cooperating somatic mutations?
  • Despite all the advances, we still have a long way to go – do not be misled by where we are.

  • For those of us taking warfarin (Coumadin), Dr. Weksler said that the newer anti-coagulants are “not there yet”.  Some patients have tried Pradaxa and gone back to warfarin.  Pradaxa must be taken twice a day consistently and this is problematic for many patients.  She believes that we’ll have a better alternative in a few years.
  • Much of the knowledge gained and progress made has occurred because patients before us and among us have shared their tissue samples, DNA, and whole selves for testing and clinical trials.

There was so much more covered.  I hope this tempts you to watch the video when it is available online at the MPN Research Foundation

Stay tuned!

Friday, October 14, 2011

4th Anniversary of my Second Chance

October 14, 2007 -- a day as important as my birthday!
Four years ago today, Dr. Darryl Tookes quite literally saved my life with his expert emergency surgery.
October 14th or 15th could very well have been the date after the dash on my tombstone (if I had one).

Dr. Tookes discovered clots in the portal, mesentary, and splenic veins in my gut.  These clots caused part of my intestine to rot and triggered peritonitis which put vital organs in distress.  During my two week stay at the hospital, the doctors searched for the cause of these clots.  I detailed the experience in posts in the Winter of 2007 and early 2009, so I won't digress today.

It wasn't until October 2009 that we learned that I have Polycythemia Vera.  The hematocrit rose to over 69 and I had symptoms that put me at high risk of a stroke.  A bone marrow biopsy confirmed that I am JAK-2 positive;  the protein/gene malfunctioned.

I have not regained the energy, stamina, and mental acuity to return to a 40+ hour career.  I want the old "me" back!  I still dream of making significant contributions to our world.  I want to be back in the compensated career track.  I am continually frustrated by the unreliable and inconsistent "good days" that chronic illness offers.

Shifting focus from frustration to gratitude is part of my daily spiritual practice.  I am aware that my life is much easier than millions of people in this country and the world.  I have a loving and supportive family, excellent affordable health care (which is expensive for chronic illnesses), great friends and community -- both local and on-line, clean water & electricity on demand, plenty of food, a safe and comfortable home...
I don't take my gifts lightly.

With great gifts come great responsibility.  That belief is ingrained in my soul.  Perhaps that is where the frustration is fueled.  There is so much I want to do to act on my gratitude and help others.  I derive intense joy from helping others, easing another's burden.  When I cannot DO, I must focus on BEING... and today I am grateful.

So today, I exclaim a heartfelt THANK YOU to Dr. Tookes and all the great Kaiser Permanente docs and staff who saved my life and keep me going.

May you share gratitude and love to someone who has been there for you.  Trust me, it feels great!

Sunday, April 17, 2011

Tired of the Rat Poison? Alternatives to Warfarin (Coumadin) are "Available"

Friday afternoon I received a phone call from Andrea, my Anti-coagulation Pharmacist at Kaiser.  She wanted to know how I'm feeling and what's been going on with me.  It wasn't a personal call;  I had my blood drawn earlier in the day and the results came back:  my Prothrombin Time PT/INR was 5.7.  This is WAY higher than where it's supposed to be (in the 2.0 - 3.0 range).

The INR (International Normalized Ratio) measures how "thin" the blood is.  In truth, the blood doesn't get thinner;  the platelets get slipperier and don't form clots as easily.   People take anti-coagulants (aka "blood thinners") to avoid blood clots and strokes.

Warfarin (brand name: Coumadin) is the old standby drug.  It is affectionately called "rat poison" because it is, indeed, the poison in rat bait.  The rats eat the bait and go back home and die of internal bleeding.  Those of us who have a history of blood clots (I had the clot trifecta in 2007 that almost killed me) must stay on anti-coagulants forever.  There is no amount of exercise or dietary change that will alter the deficiencies in my blood that cause it's propensity to clot.

Back to Andrea's call and questions:
Any bruises, she asked.  I did a quick scan and noticed 2 bruises on one calf and a bruise on 1 arm and a big toe.  And I have no idea from whence they came (sorry -- no wild activities lately!)
Any changes in your medicines?   No.  
Any changes in your alcohol in-take?  Hmmm... (be honest!)  Yes -- I haven't had any all week.  
Any changes in your diet?   Well, I've got 2 Behcet's ulcers in my mouth so I haven't been able to chew all week.  Soup or broth each day.
BINGO!  When you take the same dosage of warfarin but your diet changes significantly, it can throw the blood level off.
She told me to stop taking the warfarin for the weekend and come back on Monday for another PT/INR test.  She will call me with the results and advise me on the next dosage.
Until then, she said, be careful!  If you have any accidents or falls, go straight to the hospital and tell them you're on warfarin and your INR is high.  (I know that I am highly susceptible to internal bleeding when the INR is this high).

I've become accustomed to this in the last 3.5 years, but I tell you that I do not enjoy getting "stuck" every 3-6 weeks.  Since I have been trying different medications for other chronic illnesses (sounds much more dignified than "experimenting with drugs" doesn't it?!), my body is constantly re-calibrating.

There were rumors for years about more stable alternatives to warfarin.  Anti-coagulants that are more patient-friendly would not be sensitive to how much spinach salad we eat this week (vitamin K), would not require frequent blood testing, and could be administered in a consistent dosage.

Guess what!  Such a drug exists.  It's used in Europe and Canada.  It's been approved by the FDA, but is expected to be cost-prohibitive for most of us "regular" users.  And if the insurance companies and medicare won't cover it, we won't get it.   Here's a few links to information about Dabigatran (brand name:  Pradaxa).
NOTE:  I am not recommending or endorsing Dabigatran.  

I really like MedScape website.  It has lots of helpful information:
Dabigatran -- A Good New Replacement for Warfarin

Here's the pharmaceutical company's website for Pradaxa:  Pradaxa website

If you hear more info or get to try the new med, let me know.

Friday, April 01, 2011

Top Ten Travel Tips for Folks with Chronic Illness

I learn something new each time I venture out with Polly and Behcet’s.  While I get the “You don’t look sick” comment all the time, I’ve learned that the physical limitations are real.  If I don’t listen to my body and pace myself, I will pay for it handsomely with several days in bed or worse.

At the same time, it is important for many of us (especially those with children) to keep up strong appearances as much as possible.  Kids are in tune with our actions even more than what we say.  “Oh, I’m great, really!” doesn’t convince my teenagers anymore.   But if I get out of the house and cheer him on at tennis or volunteer with my daughter’s theatre production, then they feel more certain.

TIP #1:     Rest up A LOT before a trip.  Seriously!  Lay low;  essential errands only.   Let your body get as calm as possible before upsetting it with travel, time zone changes, new foods, beverages, etc.

TIP #2:     Take LOTS of photos, no matter how long you are out and about.  Take pictures of cool buildings, crowds, bridges, flowers, street signs, billboards, people… whatever you see.  They don’t all have to go in a photo album (does anyone make these anymore?).  If you are a facebooker or email your friends, share the pics.  It gives the impression you are out and about a lot longer than you actually are.
I did this during a 3 day trip to Venice and people thought I was all over the place.  The truth?  I had one meal each day and spent 6 hours one day “touristing.”   Probably spent a total of 12 hours “out and about” over the 3 days, but no one would have guessed from all the photos I shared on facebook.

TIP #3:     Don’t be shy about using a cane or other assistive device.  There are a lot of good looking canes and walking sticks on the market now, so don’t be shy!  It serves many purposes:
1.   Gives you something reliable to lean on when covering unfamiliar areas, especially stairs and cobblestone areas.
2.   Enables you to stay out longer.
3.   Keeps your hands off public railings and other things that people touch with who-knows-what.
4.   Signals others that you may need a bit of patience or kindness.
I used my cane in Venice when I did the walk-about with some of the other wives and simply explained that I have chronic conditions that make me fatigued and a bit unsteady;  the cane helps me keep up with everyone else.  I know I wouldn’t have lasted the 6 hour day without it.

TIP #4:     Establish an Opt-In Policy with your travel companions.   Set the expectation that you are content to hang out at or near the hotel while your family/friends do major sightseeing.  You will go with them when you feel like it.  This takes pressure off of everyone.  The others don’t have to limit their plans (e.g., that might take too long and mom will need a rest;  can’t do that because mom can’t climb to the top of the lighthouse).   It also takes pressure off of you from having to ‘suck it up and go’ when you really don’t feel good enough.
When we planned our spring break trip, we explained to the kids that mom is not going to go on many of the adventures.  In fact, we’ll assume that she is NOT going unless she tells us that she IS going to join us.   I get to hear all their stories when we connect at the end of the day – sometimes we meet at a restaurant, sometimes they come back to the hotel.

TIP #5:     Be adventurous on your own!   While the others are out and about, you need not stay in your hotel room.  Get some fresh air and wander outside a bit.  Find a cafĂ© or park nearby and do some good people-watching.
I love to see people in their natural habitat.  Each new city is like a human zoo to me.  Do they make eye contact / smile / greet passersby?  Are they taking in their environment or wrapped up in their own mental worlds?  Do they smoke?  Do they litter?  Do they spit on the sidewalk?  Are they talking on cellphones or bluetooths?  Do they eat while walking or stop and eat?  Are there a lot of dogs on leashes?  Small dogs or large?   Are there babies in strollers – pushed by moms or nannies?  What type of shoes do the men and women wear on the street?  What are the locals wearing versus the tourists – can you tell the difference?     Is there graffiti?  Posters on walls – for entertainment, political statements, advertisements?

TIP #6:     Plan ahead and check out excursions or sites that are easily accessible.   You may inquire:  are there benches to sit?  Can I get water if needed?  Are there ramps or elevators instead of stairs?  The internet is a wonderful resource (and so is your public library);  you can find out about interesting places to visit that are accessible to you ahead of your arrival.  You may choose to see some things while your companions do other adventures.  It will provide great dinner conversation later!

TIP #7:     Keep some of each of your medications with you at all times.  Don’t leave all them at the hotel/cruise ship or wherever you are staying at night.  You never know what might lead you off the planned schedule, and it is good to have them handy.  This includes a pain reliever and bandages for foot blisters or minor cuts (just in case).

TIP #8:     Keep a list of all your medications, dosages, and times of day for each in your wallet (and near your passport).   This is important for those who travel with you.  Should something happen to you, the handy list will relieve some stress of trying to recall all your meds.

TIP #9:     Keep a list of the diseases, ailments, ALLERGIES, health issues in your wallet (with your medicine information).   It is helpful for emergency personnel to know if you are diabetic, hypertensive, on blood thinner, allergic to medications, etc.

TIP #10:   Bring healthy snacks with you.  Particularly if you have food allergies (like gluten, nuts, lactose, etc.), it is wise to bring some dry food bars and snacks that you can access if the right kind of meal isn’t available when you are hungry.
I find that breakfast bars are my salvation.  I need to eat something with my morning medication cocktail, and I’m hardly “dining room ready” when I take the meds.  Those breakfast bars come in very handy!

Please share your favorite tips and I'll add them to the list.  Safe travels!

Here are some more tips from fellow MPN and Behcet's Travelers:

TIP #11:    Remember to bring your physician contact information with you, along with your health insurance information.

TIP # 12:   Keep a set of all your medical information (Tips 8, 9, & 11) together for easy reference.  Keep it in an envelope marked "Jane Doe's Medical Information" along with a copy of your passport, drivers license or other photo identification.  Again, if you are this organized, you will most likely never need to share this information.  But imagine if something happened to you... having all your info in one handy place would make treatment so much smoother!

TIP #13:   Group tours are a great way to travel.  Once you choose a destination, look into tour packages.  Someone else plans the itinerary and arranges the logistics, you can ride in comfortable buses and learn from knowledgeable tour guides.  

TIP #14:   Pack spare underwear in your carry-on bag.  You never know when you and your luggage will be separated for a day or two.  While you can live in the same street clothes for more than a day, a fresh pair of undies makes life a bit more pleasant.

Sunday, February 27, 2011

Myeloproliferative Neoplasms Conference - Day 2 Highlights

All the powerpoint presentations from the conference will be available through the MPD Net listserv sometime in the next week or so (let's give Ian, Antje, and Bob time to get home and back to their computers).

The morning began with Dr. Richard Silver, Director of Leukemia & MPD Center at Weill Cornell Medical College.  He talked about Primary Myelofibrosis and a study with low-risk PMF patients on interferon.  The study showed clinical benefits in 60% of patients and disease stability in 24% of patients.

Dr. Silver is a long-time proponent of the benefits of interferon alpha as treatment for PV and MF.
More info to come in full notes.

Dr. Ruben Mesa shared these thoughts after hearing feedback on the uncertainty and unanswered questions about our diseases:
  • We know much more about the cause of the MPN illness than we have ever known.
  • We have many more therapies than ever before.
  • As you look at the range of cancers, some 300-500 of them, there is probably only 1 that goes away with a single drug.  It is unrealistic to expect that 1 drug will cure any of the MPNs.
  • MPN Patients can expect to have many therapies over time.
  • All the therapies are in evolution.
  • Science is a journey.  It is a muddy road, but we are making progress.  It is a hopeful road.

Stem Cell Transplant Panel
This was really cool!
Four gentlemen who have had Stem Cell Transplants (Rick Posner, Larry Gersh, Ron Anderson, and Julius Dix) and Dr. Joachim Deeg from Fred Hutchinson Cancer Research Center, Seattle answered questions about the experience.   They range from 2 to 11 years post-transplant.
Here are some highlights:

Greatest Challenges:
  • Physical:  the chemo can give you sores from your mouth all the way down to the other end -- very painful.
  • Huge mental adjustment.
  • Maintaining sense of self through overwhelming illness.

  • Work with your insurance company before hand and get everything figured out and approved.  It is stressful enough without those worries. 
  • Try to keep some sort of normal routine.
  • Stay ahead with meds for nausea.
  • Develop communication mechanism and use a web-based tool like Caringbridge so you don't have to take all the calls.

Graft vs. Host Disease (GVHD):
  • Would expect more GVHD with female donor to male recipient, particularly if female had been pregnant; yet relapse rate would be lower (per the Doc).
  • Sibling donor makes it milder.
  • Patients who acquire GVHD require prednisone for about 2 years; some may need it longer.
  • Patients often report they need to take more notes, get tired, have shorter attention span.
  • Common issues are dry eyes, dry skin.
  • UV light helps with some skin GVHD issues, but prednisone is still the mainline medicine at this time.
Any Big Surprises?
  • The day-to-day living after getting out of the hospital;  the amount of time and energy it takes for cleaning the house, prepping food, cleaning the lines, hydration, going out...
  • Naive about GVHD.
  • Takes a year to feel better.
Research Trends in Stem Cell Transplants:
  • Donor Matches -- looking at partial matches to improve the regimens.
  • Refine cellular therapy as a vehicle to implant modified T-cells to combat viruses.
= = = 

there's more, but i'm tired... stay tuned!

Making It Through With an MPN
Dr. John Camoriano, Mayo Clinic

Dr. Camoriano had us laughing throughout the conference as the master of ceremonies.  On Sunday morning, he shared eight (8) key principals of being a successful patient and caregiver.  He called them TENACITY principals.

T = Training and Teaching:   learn as much as you can about your disease & share with your doctors
E = Exercise  (single most beneficial thing most can do to improve health) 
N = Nutrition:  eat whole foods, lean meats, olive oil, reserveratrol-laden foods, less milk products...
A = Activism,   Anti-aging:   get involved with the MPN community as you can
C = Calming & Connecting:  keep the limbic system strong, keep laughing, keep connected with others.
I =  Individualization:  personalized medicine is the way of the future
T = Team Building:  be the glue to connect your primary doctor with your haematologist;  connect with MPNers
Y = Yes You Can   “Act As If…”

Know Thyself & Thine Disease.
Become as much of an expert on your illness(es) as you can be.
Bring your physician along with you as your learn:
·       With peer-reviewed literature when possible.
·       With updates at office visits from experts
·       With respect & deference

Exercise Recommendations:
·       Aerobics:  Increase heart rate for 1 hr/day, 6 days a week.
·       Stretching.  Yoga and slow stretches.  15 minutes/day, 2 days per week
·       Resistance.  Weights and bands and calisthenics 2 days per week.
·       Make it fun.
·       Make it a joint exercise.

"You gain strength, courage, and confidence by every experience by which you really stop to look fear in the face.  You are able to say to yourself, ‘I lived through this horror.  I can take the next thing that comes along.”  ~ Eleanor Roosevelt.

Living an Intimate Life with Blood Disease
Teri Britt Pipe, PhD, RN

We got to talk about sex on Sunday!
Dr. Mesa introduced the session by reminding the group that intimacy is more than sex; and intimacy begins in infancy.  In the international survey of MPN patients, Sexuality Problems was ranked #4.

Dr. Pipe

·       There’s more right with you than wrong with you.
·       You are a unique individual.
·       You are dynamic;  you change.
·       You are on the journey together and alone. 
·       Sexuality and Intimacy “belong” in the clinical encounter, even if it is uncomfortable for the provider.

Where does sexuality reside?
·       Mind/brain – the most important sex organ.
·       Senses – experience what you see, hear, taste, feel.
·       Body – the skin is the largest organ and touch is important.
·       Communication
·       Being – a sense of being in this world.

Possible Impact of Chronic Illness on Sexuality

Sexual Response model by Masters & Johnson
We’ve learned that it’s not as linear as M&J described.
Sometimes the arousal curve gets disrupted by a negative thought…
It’s much more useful and comforting if the orgasm is not the goal.

Gender Differences
Personal differences – change over time

Mind-Body Approach

Preparation for Conversation with Your Partner
·       Reflect on your own preferences and needs:  what is it like when I feel loved and cared for?
·       Reflect on what your partner may be experiencing.
·       Breathe, cultivate an attitude of appreciation.
·       Listen with appreciation and compassion.

·       I feel close to you when ___
·       I like it when ___
·       I want to show you how much I care for you.  Please share with me some ways you  might like me to show you.
·       I would like to try ___  Would that be okay with you?

Limitless Expressions
·       Cuddling
·       Holding hands
·       Eye contact
·       Humor
·       Art, poetry, music, food
·       Phone calls, cards, tokens

Location, Location, Location
·       Keep the bedroom as a place for intimacy and sleep
·       Talking about difficult/awkward things elsewhere
·       Having shared signals for intimacy 
·       Comfort, serenity, peace, belonging

Paying attention, intentionally
Enjoyment with awareness
Bringing attention to the senses

Asking for Additional Resources
Health care team
“Cuddle Sutra” book by Rob Grader
“Relationships” cd by Bellaruth Naparsek
“Baggage Claim”  -- this illness time is a good time to

To love a person is to learn the song in their heart and sing it to them when they have forgotten.

Supplements and MPNs
Larry Bergstrom, MD

Dr. Bergstrom provides integrative medical consultations for patients.  Integrative medicine is a holistic medical program that addresses the physical aspect of health but also treats the emotional, mental and spiritual aspects within the framework of exercise, nutrition, and stress reduction.

While there is no consensus or recommendations for incorporating supplements into the treatment of myelodysplastic or myeloproliferative disorders, supplements are helpful when people do not eat a balanced diet.

Utilizing food as a source of health and energy.
Emphasis is on food first.
Supplements are used to fill in where food is not there.

He promotes:
Mediterranean/Anti-Inflammatory Diet

Mediterranean Diet Pyramid

Apoptosis =  cancer cells die

Anti-cancer foods:
tomato, garlic, carrots, tea, ginger, soy, basil, rosemary, turmeric/cumin, broccoli, watercress,
Cruciferous vegetables:  broccoli, brussel sprouts, cabbage, …
Any mushrooms must be cooked to get any benefit from them.

Alzheimer protector:  cumin/turmeric

These are the Recommended Supplements Summary  
·       Resveratrol:  500-1000 mg/d  (inhibitor of CYP2D6 and CYP2D9)
·       Indole-3-Carbinol 300-400 mg/d   (replaces broccoli)
·       Turmeric (black pepper (300-100 mg/d
·       EGCG 500-750 mg/d                                   ~3 cups of green tea per day
·       DIM 300 mg/d
·       Vit D  1000 IU/d
·       PEITC    watercress
·       Fish Oil (sum of DHA+EPA) 1000 mg/d   <-  pay attention to the DHA and EPA Omega 3’s

Cancer cells makes lots of reactive oxygen species (ROS) – stimulates cell production.  Watercress suppresses ROS.

A Medical Doctor asks:  What’s making you sick?
A Naturopath asks:  What’s keeping you from being well?

Closing Session:  Mindfulness Meditation
Teri Pope

Mindfulness Meditation
An awareness of moment-by-moment experiences that arises from intentional

Mindfulness Based Stress Reduction (MBSR) by Jon Kabat-Zinn at U-Mass Medical Center
Attitudinal Foundations:
·       Non-judging
·       Patience
·       Beginner’s mind
·       Trust
·       Non-striving
·       Acceptance
·       Letting go

This is an effective tool in leadership. 
Resonant Leadership (Boyatzis & McKee, 2005)

Healthy Mindfulness Practices
·       Breath awareness
·       Positive emotion/relive a positive emotion
·       Mindful eating:  look at your food, notice the texture, taste it, chew it, enjoy it before you swallow; what would it be like if I did every meal like this?  Think about all the hands that brought this to you.
·       Kindness tracking:  those that have come to you and that you’ve extended to others.
·       Gratitude practice:  even with your to do list
·       Gentle movement: 

Please Note:   These are ROUGH notes.  A more complete report will be written when the powerpoints are made available and my mom's notes are combined.  I'll make them available in a PDF document.