Janet/Nana,
I'm 64, live in San Francisco and when I was diagnosed with MF I was told my prognosis was that I had three to five years to live. That was nine years ago. So Rule Number 1: don't listen to the frightening statistics about those with our disease. There are so few of us that the numbers are meaningless. Doctors, like all scientists, talk in terms of percentages, but when you get to real numbers, they're talking about X% based on a “group” of perhaps 30 patients.
Since you're at Anderson you've got Rule Two handled: you're at the center of the universe for those with knowledge about MF. In my case, since 2000 I've been followed by a team of hematologist/oncologist specialists in blood cancers and stem cell transplants at the University of California at San Francisco (UCSF). However, I got a second opinion from doctors at Stanford. Even though you're at MD Anderson, one of the best, have you had a second opinion? If not, get it. You can't worry about hurting doctor's feeling. This is your life.
As I understand it Pomalidomide is a form of thalidomide. Among other things it stimulates the immune system, but I think you'll find that Dr. Ayalew Tefferi of Mayo Clinic, one of the leading researchers into MF, was one of the first, if not the first doctor, to propose the use of thalidomide for MF patients in an effort to reduce spleen size. In past years I'd self-injected Procrit, without ever taking chemo, to help raise my red blood cell, hematocrit, and hemoglobin levels, but based on Dr. Tefferi's research my doctor decided to try thalidomide for me. But because of the burdensome bureaucratic regulations surrounding the use of thalidomide (remember the horribly disfigured children born decades ago whose mothers had used thalidomide to control nausea during pregnancy?), he chose to try something else for me. After first confirming that I had the JAK2 mutation (by that time my wife had told the doctor, “You don't have to check. If it's a mutation my husband's got it.” She was right.) he put me on a combination of Gleevec and fluoxymesterone, a form of testosterone. Gleevec was originally developed to help CML patients control their excessive production of white cells so seemingly it had nothing to do with MF patients who suffer from a diminished supply of red blood cells, hematocrit and hemoglobin, but it's been found that for some people with the JAK2 mutation, in combination with a form of a low dose of testosterone, Gleevec can significantly reduce the size of your spleen.
In my case the results have been dramatically positive and I no longer take Procrit because, with the reduced spleen, that organ is pushing out into my blood stream the red blood cells it's producing but which it didn't know how to push out, which is why it had grown so large, acting like a sink, pooling blood. Certainly worth a discussion with your doctor and if you're doctor wants to talk to mine I'd be glad to share contact information. It's a pretty small community of doctors who really know what they're doing regarding this disease and they all tend to cooperate.
In '06 I did have a hemoglobin crisis. I'd been told that the disease was progressive but I'd never fall off a cliff. Well, in '06 I was pretty much in free fall, my hemoglobin dropping like a stone to 5.6 and for the first, and thus far, only time, I needed blood transfusions and received 14 units over the course of about three weeks and it took a good six months for my numbers to return to their normally abnormal level. The truth is that to this day no one really knows what happened, but although this happened while my wife and I were traveling (Ireland) we were in a country where I could get critical care – another rule of mine for those of us with MF. Though the doctors there certainly didn't know how to treat MF, with guidance from my doctor back in SF, they were able to give me transfusions and track my hemoglobin numbers until they got high enough (about 9) to allow me to come back home.
Feel free to ask any questions. You and I are part of a small community and I'll be happy to answer anything that I can. Meanwhile, if you haven't done so since your diagnosis, pick a rose every week and smell it long and hard. The crazy part about this disease, at least for me, is that I stopped taking things for granted and now treat each day as a gift and so far I've had lots of gifts.
Harvey