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:
- 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
· 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 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.
· 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.
· 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.
Personal differences – change over time
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 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?
· 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
Bringing attention to the senses
Asking for Additional Resources
“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.
Mediterranean Diet Pyramid
Apoptosis = cancer cells die
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
· 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
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
This is an effective tool in leadership.
Resonant Leadership (Boyatzis & McKee, 2005)
Healthy Mindfulness Practices
· 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
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.