Hi I have been asked if I would be interested in doing a trial. I take Ruxilitinib for MF and the trial is to take Tamoxifen as well.
I have read all the information I have been given and although I understand that I might not be accepted due to lots of reasons (I hear they are quite strict) I wondered if anyone on here has also been asked or if anyone has any advice at all before I decide whether I will do it.
I have said since my diagnosis 2 years ago that I would seriously consider any trial I am offered.
Janet x
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Skye333
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I also take Ruxolitinib for MF and at the moment it doesn’t seem to be working quite as well as it did. When I see the haemo in November he said if my platelets were still going up or at the same level then he would give me an additional tablet which I presume to be HU bit of offered the Tam then I think I would take it.
We have to go by the advice of our specialists most of the time I think x
Hi Graham my bloods are ok at moment although hb steadily going down. I was surprised they asked me as I’m only early stage. Maybe because Tamoxifen is already established as a post breast cancer drug. I’m not sure what it does to the cells but I will ask all those questions when I go back in 4 weeks.
I was asked to take part in the Tamoxifen trial back in March. I am ET JAK2+ and I agreed, all the premilinary tests were done but in the end I was not suitable because I did not have enough of the JAK2+ mutation in my blood. So the criteria is strict. I wouldn't have minded putting up with Tamoxifen for 6 months if that would have done something about my ET and reduced the need for Hydroxy. I am on 9 tablets a week presently.
I have pv so this might not help.... just on aspirin and venesections 3 monthly.
I also have a moderate risk of breast cancer. It was suggested by that consultant to take tamoxifen as a preventative but my haematologist said no as there is a greater risk of blood clots with tamoxifen.
So its been suggested that I take anastrozole instead which will b fine if I need to start taking Ruxolitinib.
From information received at the forum and after reading the restrictions, I would grab the opportunity if offered. Sadly, two of the restrictions are having suffered TIAs and stroke. I was really hoping I could take part in this trial because it is assessing the possibility of reversing the gene mutations. Please let me know if you manage to take part and the outcome. All the best Penelope
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