Anyone heard of Promedior?

I've been researching clinical trials for MPNs and I came across a drug trial for PRM-151. It's currently in phase II ( looking at safety & efficacy in a larger population) after promising Phase I results. It's some sort of biologic (protein?) that is indicated for fibrosis in the marrow..they are looking to halt or reverse fibrosis. It was originally developed for pulmonary fibrosis but this trial is for myelofibrosis (wondering if it could be applicable to other mpns as well) Just curious if anyone knew anything about it. It appears all the trials are in the US. If something like this could be developed perhaps it could be used in conjunction with Jakafi to help those whose disease has progressed?

22 Replies

  • Hi Jennifer, yes that's a promising new drug. I think Prof Harrison at Guys & St Thomas' is running the trial too! Worth checking. Good luck!

  • Just read up on the trial - it certainly sounds very promising. I'm due to see my haem at the end of Sept and will ask her opinion. This drug is infused but looking at the literature I read it's not given daily. Great that there is such great progress with this disease when I was first diagnosed 7 years ago there was not the same amount of hope as there is today. I have no doubt it will come to Europe if it's successful.

  • I am just in the process of moving from Scotland to Devon and once there I've been offered a place on the trial. I have all the info about it but my partner is not that happy about drug trials. I am hoping to get an appointment for us both to discuss with Claire Harrison once we've settled in

  • They do seem a bit scary after all they are trials. The way I look at it is that they want you to live as they are investing a lot into your progress and really wouldn't offer you a place if they didn't feel you're a good prospect. I've been on my current trial nearly 4 years now and my life certainly has improved. It's a huge decision but as long as you're armed with all the info you can make an informed decision. Very best of luck to you with the move from one end of the country to the other and hopefully your partner having her mind put at ease when she attends your appointment.

  • What trial are you on if I may ask?

  • Ruxolitnib and panobinistat have no idea of the name of the trial. I take 15mg of rux twice daily and 25mg of pan 3 times a week every other week. My spleen has stopped shrinking but at least it's not growing!!!!! The pan is quite severe on my poor old tum and I need to take lots of Imodium to relieve the discomfort!!! Fair play to you doing all this research and sharing it with us yes totally agree ' keep hope alive' !!

  • Sorry about your stomach!

  • Yes, I see that viewpoint but a nasty little voice keeps asking me if they really are investing in my progress or in making money for themselves. Then another little voice reminds me that no drug would come to market if nobody was willing to enter trials! I will have to see which little voice shouts the loudest in due time as I am at present not doing too well on Ruxolitinib. I'll let you know the ultimate decision😏

  • Thanks for your insight.

  • That's a hard one to answer as its entirely feasible!!!! What a shame rux isn't helping such a big worry for you both. From posts on this page I reckon you couldn't see a better person than Claire Harrison she's very highly thought of. That's the best we have really the advice and trust we need to place in the hands of our haems and our own instincts. I wish you all the very best making your decision which I have no doubt will be very well informed. Yes please do keep us all informed as we are all very interested in each other's decisions. Likewise when I see my haem in dublin at the end of Sept maybe I'll have a little bit of insight too as I intend to ask her opinion.

  • Hi, i see from your mail you live in Ireland and attend haem in Dublin do you mind me asking which hospital you attend and if the haem specializes in MPN's, I attend Tallagh hospital have ET. It is not often you see anything from Ireland so I am curious about your reply especially as you say your on a trial I did not think anyone in the south of Ireland had this option available.

  • Hi Irishmod, I attend St. James. Eibhlin Conneally is my haem she is excellent. St. James are constantly involved in clinical trials though the trial I'm on is now closed. I live in Sligo but my haem there asked Eibhlin if she would see me with a view of my suitability for a trial. Long way to travel but I take a good book!!! That was 4 years ago and I'm doing really well. I met a couple of patients with MF but no one with ET. I have an appt at the end of Sept and can ask the question for you??? Your haem at Tallagh would definitely know her and could offer advice. Let me know what I can do to help.

  • Hi Eire, thank you so much for you reply and your offer to speak to Eibhlin anything you can find out would be great. When I was diagnosed just over 4 years my platelets went to 1700 and my haem put in Tallaght put me on hydrea and aspirin I then asked my own doctor to refer me to Eibhlin Conneally as I had researched and found she was MPN specialist. I had a one consult at the time as she just said she agreed with the treatment plan. Part of me would have liked to change as she is the expert but I have to say Tallaght haem is very nice but not experts in MPN in January he did change my medication to Anagrilide as Hydrea gave me loads of probems. I cost me 144 euro each month and wonder if I should be on Long Term Illness just to get my drugs free I don't need anything else. It would be good to find out if any trials available with Eibhlin for ET patients and I'm lucky I live in Kildare so Dublin very convenient for me. At the moment the hospital is finding it difficult to control my platelets now have me on a mixture of Hydrea and Anagrlide to see if this will work its been a long 4 years to get them into normal range. If you can find out anything that would be great, All the best for now

  • Hi Irishmod, sorry for my late reply. There are no clinical trials at James at the moment for ET or PV I asked for you at my consultation. James is going to become top hosp for cancer care so who knows what is down the line. Your consultant will be fully aware of new trials when they come along I'm sure. If you did get on a trial your drugs would be free but other than that they're means tested. My clinical trial drugs appear not to be working anymore so it's back to the drawing board!!!!!! My spleen doubled in size in a very short time - so uncomfortable!!!! I look permanently pregnant not a good look at my age!!!!! Seems your haem at Tallagh is on top of your situation and all the haem's have meetings etc to discuss best options available. Good luck.

  • I'm just beginning my journey with ET Jak2+ but I'm always thinking about the future. Why wait until our poor bone marrow gets scarred before doing anything about it? I hate the uncertainty of it all! Beetle, I wish you the best of luck. It sounds like the drug is a protein that is naturally present in our bodies (don't know all the details) so maybe there's limited side effects? Also I'm assuming that not all my stem cells have the JAK2+ mutation..couldn't immune system be modified to identify the clone and destroy it? More research is needed...I know here in the states the FDA has a " fast track" program for drug development for.diseases/conditions that really need treatment NOW instead of the years and years it typically takes for approval. One could argue that there are more risks involved with this approach..but the MPN life is risky business anyway! Keep hope alive!

  • I must admit i had those thoughts myself when i was diagnosed.

    I had thoughts along the lines of i know stem cell transplant is considered curative, why wait until im really sick before trying it, surely if i did it now when fit and healthy i would stand a better chance of it working. Obviously i know from research that its considered curative but doesnt always work, can make you very sick etc.

    I am on Rux (Jakafi) and I know some early results showed fibrosis had halted or even reversed in some people, i am not sure if there is any further evidence of this though.

    This new drug looks great, but i fully understand why MF patients get trialled first (like they did with Jakafi), because they are at most risk, then PV patients come next and unfortunately in most cases ET patients last, its just because the conditions carry the most risk in that order.

    PV patients only have a 15% chance of progress to MF, and ET 10% so you have to weigh the up with the risks associated with any treatments.

    I do think we will get to the point where these new drugs we are talking about become the prime treatment for all patients, but we are some way off that, and cost will be a massive factor to.

  • I do want my brother screened as a stem cell donor but pretty certain insurance won't cover it. 10-15% seems pretty high to me considering I've already survived thyroid cancer at 26 (rare at that age) and now this ....I have to hope for the best but prepare for the worst. I remember being told at 26 that thyroid cancer was the best cancer to get and it wouldn't affect my life 41 I'm told I have an acquired mutation in my stem cells but it shouldn't affect my life expectancy. How do you accept no control over your body? It's hard for me. If JAKAFI (Rux) may stop progression then why wait? I do think there may be at trial for JAKAFI for ET patients. And what about Pegasys interferon? I've read about molecular remission for some ET patients. I don't think it is approved for treatment of ET here in the US. And yes it comes down to cost. My mother's Enbrel (biologic) used to treat her rheaumatoid arthritis is thousands of dollars a month and insurance doesn't cover all of it.

  • You are right there is a trial on Jakafi for ET patients. Not sure how its going but before i started it my Platelets were usually high end normal, and even had been slightly over 450, they reduced slowly and have balanced out around the 190-200 mark now for the past 9 months.

    I read too about Pegasys interferon and remission for PV patients but i think this is very very rare, we are talking a handful of cases out of hundreds of thousands.

  • My platelets are low 600s lately..just aspirin for now. I'm going to my next hematologist appointment this coming Friday armed with all of these questions. I also wonder if I hadn't found out by "accident" during my prenatal visit whether I would have had any symptoms. I felt pretty good until they told me something was "abnormal" 😜

  • Plenty of people dont find out unless by accident, one woman i met with ET has counts of about 3500 but only found out when giving blood.

    You are right to ask questions, i did and still do. Try and look at your blood counts on the screen or even get a print out. You may find they concentrate on your platelets but this will tell you if there are any other discrepancies too.

    If there are any then you can pose the questions about those too, hopefully there wont be.

  • My Dr said at some point I may switch to PV...assuming it's cause my JAKD status

  • With MPN's a lot of people sometimes have overlapping symptoms, a lot of PV patients cant have elevated platelets etc.

    I know its not easy not to worry, but the majority of people do stay 'as they are' and do not progress to anything else.

    And progress in the past few years treatment wise has been fantastic, we are both young and i really wouldnt be surprised in 10-15 years time if we arent looking at a drug which totally controls the conditions that is readily available.

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