- 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.
- 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.
- 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.
- 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.
- Donor Matches -- looking at partial matches to improve the regimens.
- Refine cellular therapy as a vehicle to implant modified T-cells to combat viruses.
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.
Personal differences – change over time
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.
Closing Session: Mindfulness Meditation
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.