Hi everyone. I have myelofibrosis. I am on ruxolitinib at the moment but my platelets keeping dropping. My oncologist put me forward for a clinical trial I went to London talked the very nice Dr. He gave me 2 literature books to read regarding the trial. I really don't know what to do. I'm thinking I don't want to go through this. The journey every day will be tiring. Also the side affects sound bit daunting. Has anyone been in these clinical trials? I need some support as I don't know what to do. My family are no support not really interested so I havnt anyone to discuss it all with.
Thank you. Vanessa
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I totally understand. I have no one to help me, so have not been able to do a trial for the same reason. I went to a lecture that presented a panel of patients who did do trials, we were able to ask them questions and learn from them. It seemed, to me, that they all had a good support system of people who could drive them and help them with errands- I felt they needed a team of family support
I have MF and I am 75. My platelets have been dropping too. I am also on Jakafi. Last week at 146. I see the doc today. I doubt I will do a trial at my age. I have my affairs in order.
Hi Vanessa, I have just this morning had my regular 3 month follow up for the Givinostat trial for PV. Sadly my HCT has gone up again necessitating another venesection today - 4th this year ( trial protocol violation,- 4 or more in a single year). So after 4 years I need to come out of the trial and switch to another drug - probably Pegasys, but to be decided on my next appt in 3 weeks time.
Throughout the trial I have had superb attention and care from the trials team and my consultant haematologist. This regular contact with the team and monitoring of my condition I think, made a very positive contribution to my well being over the last 4 years, on top of the drug therapy. If you are thinking hard about signing up for a trial, I would certainly encourage you to bear this in mind because the extra care and attention you will receive will be a valuable extra benefit to you, over and above the drug therapy, based on my experience.
Thank you Terry. That is a big help for my decision. Maybe I will try and see how I go. Thank you again.
I would do it. You will be closely monitored and even if the drug doesn't benefit you directly the fact that they are watching your illness in very close detail they will be able to tell you a great deal about how it is effecting you and what they perceive as your future. They will undertake a very detailed assessment of your current status and then watch you like a hawk until the trail is finished. I think this will be beneficial to you and your Doctor.
Nothing ventured nothing gained
My two pennies worth. Good luck what ever your decision.
Thank you Guy. I really appreciate your reply. I am seriously thinking of doing the trial now. I was 90% to not doing it but now I have changed my mind reading all the kind support you have given. Thank you
Yes, being alone at such times is precisely why we need a website like this one.
Vanessa, I went to sign up for a trial myself a couple of years back now. However, in the end I was deemed Not Suitable, because it was a Random Placebo based trial, and I needed to keep my platelets down, as mine are always too high...
I am also on Ruxolitinib 5mg b/d but my platelets are now in the 900s, and have been for some time. I too am looking for other solutions to my own dilemma, and it seems options are always so limited...
Another MPN friend recently told me that his Iron/Ferritin was very low. He had an Iron infusion which has helped lift his Ferritin levels and his platelets are currently stable...
Whatever you decide to do... You know you will always find support here...
Thank you Steve. This site has really lifted my spirits. I have no support so reading all your kind supportive suggestions have helped. I am thinking now of trying a trial see how I go. Hope you are keeping OK with this horrible illness. But keep strong.
Hi Vanessa, how far would you have to travel each day? How long would you have to attend hospital every day for? Perhaps you could find a place to stay overnight at least occasionally so that you don't have to do the journey every day. Maybe one of the support organisations like macmillan can help you find somewhere to stay, or maybe the hospital can help you find somewhere. You could even put a post on here asking if there is anyone in the area who would be prepared to let you lodge with them. At least you would be with someone who understands and who you could talk to. Best of luck.
Hi. It's a bit of a journey into London every day. I was thinking if I could stay somewhere that would be great. But it's all money which I don't have. Thank you I will look into it what you suggested. Hope you are keeping well. Thank you again. Vanessa
To enter a trial is a difficult decision. Logistics and support form a very real part of the decision. Of course you will always find support here but that is not of the practical kind usually. At the moment I would love to enter a trial as I fear Ruxolitinib is starting to fail for me. However, with platelets in the 30-40 range I don’t qualify for the available/relevant ones at present. I always think that if nobody had been willing to trial drugs then none would be available so I would be willing to ‘pay back’ if I could. As others have said your disease and condition would be well watched. A lot to think about. We will all respect your decision whatever that is so I wish you well in making your decision.
Hi Beetle. I am always willing to help for the future research. In the year I went to help the junior Dr's who were having their test to qualify, to examine me and report their findings. I was there all day it was tiring but very rewarding. I was given literature regarding these trials and really I was baffled. I will read them again to try and take in what it all entails. This site has helped me alot to maybe try a trial. As I have noone to discuss it with. It is a shame you can't go on one. My platelets are usually low but lately they have gone to 83 which the Dr said is OK to go on a trial. Hope you are keeping well. Vanessa
Hi, Vanessa. First, I’m sorry you don’t have a support system. Most people don’t really understand what we go through on a daily basis. That’s why this site is so crucial.
As for the trial, you’ve gotten much good advice from your fellow mpns here. I believe, on the one hand, if your doctor thinks this trial would be beneficial,I would probably make the effort. But, I realize from your post, there are many factors to consider. I wish you the best of luck, whatever you decide.
Hi Vanessa, so sorry you find yourself in this difficult position. I guess I would ask myself what are the possible benefits of entering a trial and what are the possible negative effects of the trial. Then I would ask myself what are the results of doing nothing. I hope to fight as long as I can. It is obviously your decision and notably a difficult one. Whatever you decide to do I am sure it will be the correct decision for you. Best wishes as you continue your journey.
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