Hello everyone.
I had a lengthy appointment at Guys Hospital today with Professor Harrison and team to discuss the options for my progression from et to MF. I have been invited to take part in the Manifest Drug Trial. If anyone here is on the trial could you please let me know how it’s going for you? It’s very difficult to know what is the best course of action, regarding symptom burden and side effects.
Many thanks
I am being considered for the Manifest trial by the team at UCH but as yet do not know what is involved. I have to have an ultrasound first as my spleen would have to be enlarged by a certain amount to take part. I am on Jakafi at present. Not sure if I want to take a step into the unknown! SkipperL
Hi, I am currently on course 7 of the Manifest trial having had secondary MF. You have to pass certain tests before starting such as an MRI scan and BMB. The dose starts as 125mg/day and is increased in 25mg amounts to a maximum of 225mg depending on your tolerance of the drug and certain other parameters. You must not have eaten for 2 hours before taking the trial drug and for 1 hour afterwards. I set my alarm for 6.30am and go back to bed.
Personally I am now taking 175mg with ruxolitinib and have found very few side effects. My biggest problem is needing blood transfusion every 3 weeks, partly due I am sure to the large amounts of blood taken for testing and taking 2 drugs that suppress bone marrow. You will need to attend OPD appointments every 3 weeks and between days 4-14 in the first course and after each increase in dose for drug level testing which takes 8 hours after taking the pills in hospital. I am due to have a BMB next week to see if there is any improvement over the pre trial sample. My spleen has reduced marked;y in size, my white cell count reduced and my LDH which is a general marker of ill health is reduced.
I hope this is helpful to you. Of course your experience could be different to mine.
Remember all travel expenses will be reimbursed but this could be delayed a while, this includes hotel stays if needed but not food.
Good luck.
I am interested to hear that they are trying the new drug in combination with Ruxo. I have MF and have felt much better on the Ruxo despite still having monthly transfusions. Are they hoping that the trial drug will lead to total remission?
No afraid not. I was told that a combination of rux and another drug is currently thought to be the best way forward in treating MF. The Manifest trial has a rux plus CBI-0610 arm and one with CBI-0610 only. The question is what will be the other drug.
CBI-0610 has been reported to reduce the severity of bone marrow scarring and lead to less transfusions. Guess I will know if it applies to me after a BMB next week.
Thank you very much for all the easy to understand information.! 😊 it’s good to know that you haven’t had any adverse side effects which is my main concern. I have been told I am eligible for the trial subject to passing the screening. I am concerned about blood counts getting so low that transfusions are necessary, so far I have managed to avoid any with high platelets and anaemia. I think I have decided to agree to the trial if for no other reason I will be more closely monitored than I am at present. I will be interested to hear if your bmb shows reduced scarring. Wishing you all the best.
Please feel free to write either publically or privately. I don,t care which but if my consultant shares the info with me I will share it also. The company making the trial drug says its reduces transfusion dependency and in 30-40% takes patients out of transfusion dependency( from private confidencial conversation). Of course patients are cherry picked at the start of trials for obvious reasons so this may not play out as trials progress.
I’ll keep in touch and share the journey, thank you, good to know I’m not alone!
Had the BMB last week and had a chat with my consultant re whether it would show if persisting with the MANIFEST trial was worthwhile. He said that bone marrow is not homogenous so if the biopsy hit a more fibrous area it didn't mean to much. The fact that my spleen has markedly shrunk he said is a good sign so keep going.
I have always thought that the less senior the person doing the BMB is the less painful it is. The nurse who did mine a week ago was so good I felt virtually nothing. I asked how far through she was and was told she had finished.
Will update you when I get the results in 2 weeks.
Really appreciate you keeping me updated, thank you, and it’s promising to hear that your spleen has shrunk. I have agreed to the Manifest trial but it has been put on hold while corona is tackled. Here’s hoping your bmb results show a slowing of fribrosis. Keep well during these troubling times.
Sue
Had an appt for 1/4/20 and frankly was scared re the changes to trains meaning I would be exposed to the public for a lot longer than wished. Got a reply to e-mail today re my concerns. The next course of treatment, course 10, is being posted to me along with the paperwork and I am having an FBC done Thurs as I need it but also a safety measure with being managed remotely. So sorry I can not update you on my BMB but will try to keep you informed as much as possible. No idea why italics changed, don,t care either.
They have a massive issue with coronavirus, especially the stupidity of the younger generations but we have not been forgotten about.
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