Have not been on here for awhile, been very down and depressed. In December I went to an MPN expert at John Hopkins for a second opinion on my ET and HU and basically because every forum for ET says you should at least once a year see an expert and actually my GP agreed and referred me to him. I have been on HU since November with slow reduction of platelets started at 743, then 650, 617 and last count was 552. The expert wanted me off HU and that is what he wrote my GP, said it does not nothing for the stem cells and told since I had previously cancer three years ago I should not be taking this drug because it can cause other cancers. Then he tells me I really don't need to take anything right now because he states there is no research to show a correlation between high platelets and stroke risk that people with low platelets and normal platelets have strokes, that there is more of a risk of a bleed if it gets over a million. OK so this is going to be long sorry, then I go to my local Hem Dr and he disagrees wants to raise my dose because he says he does not want me to stroke out! Ask about other medicines due to all the side effects says no they have worse side effects. Hardly listens to me, rushes me out like this is no big deal I was there all of 15 minutes! In January got really sick, dizzy, throwing up all the water and a pain a real bad pain in my back near my kidneys, stop the medicine, pain immediately went away after two days, go to my GP some of blood work is off, low numbers for anemia, tells me don't worry about it, told him my legs hurt tells me to get up and move more, tell him my face feels like its on fire like a bad sunburn, says that has nothing to do with ET. Now the really best part is and he knows my local Hem Dr at the cancer center because its all the same hospital. Then he tells me everything is all in my head after him how worried I am of taking the medicine or not taking the medicine! He says its all in my head, now I have been going to him for years and years. I hate to complain, I rarely go to Doctors and then he told me stop looking up stuff about this disease, are you kidding me! seriously!
So now I'm really depressed, I go to bed at night thinking am I going to wake up. this is worse then when I had my original cancer which is the kind when you go into a cancer hospital and see people getting infusions, no hair, weak etc and wondering if they will be living in 6th months.
What is soooo confusing here in the US is that all these experts disagree, the local Hem Dr's think they know everything because they are blood Dr's but they don't about the MPN's. Some age does not matter, its your prior health issue's, some go strickly by the Mayo clinic and say over 60 Risk. This disease is rare some say take HU won't kill you very old drug but it is a chemo drug, it is old, never been reformulated (I'm quoting an expert from one of those conferences) and as far as medicine from the pharmaceutical company's cheap to dispense. Angrylide can be very hard on the heart and Pegasy well not too many Dr's know about it, the pharmaceutical are making less and less due to the new Hep C drug and most link it with the regular interferon.
So here is why I feel so depressed, I now do not like my local Hem Dr but not too many choices, if I go back to the expert which he feels I do not need to go back now, it is a teaching hospital, in the worse part of town and you literally wait for hours. Yes people come from all over the world to this hospital but he is one person that feels this way, one expert, eventhough he is considered an MPN expert, is a professor and director of the whole hematology dept and also an oncologist and a very nice man!
I heard Dr Messa at the Mayo clinic say they are doing trials with HU verses pegasy for ET and its very promising in the third phase. I found a trial not far me in Georgetown, however they tell me I am ineligible because I was on HU. But the Dr there Dr Kessler (also an MPN expert) say he would see me and maybe we could come up with an alternative because I told him everything. So do I go? do I just stick with my local Hem and keep my mouth shut and stay on the chemo pills which believe me I had tons of side effects. When my GP told me its all in my head and I truly believe my local Hemo Dr believes most of this is in our heads the side effects etc. He actually googled one of my side effects.
My life is I have a 93 year mother, an older son dealing with PTSD, a younger son dealing with lots of issues with his marriage and four kids, I work full time have to, to keep my insurance and a husband who does not deal well with sickness and keeps telling me there is nothing wrong with me!. I find my self coming home and going to sleep, not being able to do anything once I get home from work, simple tasks take me longer to do and just don't feel like doing anything! I'm forgetting things also. Stressed, depressed and everything else.
Sorry this is long, this is a great forum and I have not been on here for a while and just need a little input on what everything thinks. Thank you way in advance! Mickey