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For the last year I have been participating in a clinical trial at City of Hope. I did not believe I would be billed for the care as my only reason for going was the trial. My insurance has paid some of the charges, but I have still been billed over $4000; does this seem right to anyone else? I would really appreciate the feedback.
Seems like an abuse to me. Clinical trials benefit laboratories that must test their drugs before putting them on the market, these laboratories must assume all expenses, even in some cases they… read more
I have non but do not have the jak2 mutation. Are there any treatments or clinical trials for non-jak2 patients?
There are two new clinical trials that I know of for CALr. One is a Phase I vaccine study out of Mt. Sinai in NY. They also told me about a CALr antibody study being done at several sites, one of… read more
I have secondary Myleofibrosis I am soon going to be taking a clinical trial medication Pacritinib. My spleen takes up half of my torso very enlarged and my blood counts are all over the place. Has anyone else taking this or taking now? Did it help you? Any side affects?
I have been on Pacritinib for about eight weeks now. I saw my doctor yesterday and he said I am doing great. Before starting the program and he said I was a very sick woman. My blood levels are… read more
Thanks Jim😊
How are you?
I have PV (diagnosed in 2020) with iron deficiency without anemia because of monthly phlebotomies and over production of RBCs. My bone marrow showed depleted iron stores. I take iron pills 4x a week, but am still iron deficient, with various iron deficiency symptoms such as fatigue, shortness of breath with exercise, brain fog, brittle nails, skin issues, poor wound healing, etc. I was on hydroxyurea for a month, but it bottomed out my platelets, so it was discontinued. Has anyone had similar… read more
Is there any chance that you can cut back on the phlebotomy?
When I took HU, for the 1st 3 months I had phlebotomy every 2 weeks at first and then only if my hemoglobin was 13.8 or higher; below 13.8… read more
You, too. In this trial the bone marrow is optional. However, lots of bloodwork, EKG, echo, ultrasound, etc.
MPNRF ADVANCING RESEARCH First US Clinical Trial for MPN Vaccine :
MPNRF proudly funds the first US clinical trial to test a vaccine that could reverse the effects of a mutation associated with MPNs, specifically the calreticulin (CALR) mutation.
Article below
It is a phase 1 study. The MPN specialist I am seeing for the trial (not my regular physician) seems to believe it is promising. I am receiving the vaccine regimen but not the vaccine regimen in… read more
I am currently on the trial. Have a lot of fatigue, but no more phlebotomies.
Hi, I am 61 years old, just been diagnosed with ET and also JAK2- I have a platelet count of around 600. I am in very good health with no underlying conditions. I don’t want to be irresponsible but do not want to rush into taking Hydroxycarbomide. My age is the only thing pushing me into the high risk bracket. Has anyone else opted not to take this drug.
Hi. I'm 72 and have been under treatment for Cal-R mutation ET for almost four years. Just want to say: I am tired of being told I'm old! AGE IS ONLY A NUMBER! I believe the risk equation should… read more
I'm 58 with ET JAK2 and my platelet count is in the low to mid 600s. I'm considering starting Pegasys or Besremi (clinical trial) early rather than wait until I reach 60. I don't think I would mind physical side effects, but I would be less tolerant of mood changes. Have either Pegasys or Besremi affected your mood? Or did you have any other side effects that required you to stop taking them? Thanks for sharing.
Curious to read the responses
