Excited to say I’m MRD negative 🎉🎉 🎉 I have been in clinical trial for relapsed CLL for 14 months and am on Ibrutinib and Venetoclax. I made it through the worst mouth sores ever imaginable ....they even lowered my dosage of Ibrutinib which I thought would ruin my chances
I want to thank everyone for all your valuable information ... you helped me in so many ways and this site was like a miracle when I found it. I learned and will continue to learn right here
My trial is up in a year but I will need to stay with Ibrutinib a while longer. My best to you and God Bless you for all you go through ❣️
Catnap7
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Catnap7
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On ibrutinib for 17 months and after seeing the success of I+V in ASH19 trials , i asked my Dr if there is in mind any trial for people like me , who has been on I for a long time with good results. But she says that there are not trials for non relapsed patients ...
There may not be trials, but your doctor may be able to add V and get financial assistance for you. Others have done that. Hopefully there is some kind of tracking of results.
she won´t ......so i asked her directly ....she said she won´t expose patients to extra toxicity if they are doing well. So i am just curious if there are any such trials going on...
Just doesn't get much better than that! Hopefully researchers will be able to develop a deeper level of testing to determine whether some who test MRD negative are actually cured.. they have gone so far as to say possibly cured for some of the patients in the FCR trials who have been in remission for 10+ years.
Thanks for sharing your story and providing some hope this morning for myself as well many others I suspect. I don’t recall too many MRD negative reports from I & V recipients in the relapse category after chemo and specifically BR chemo. Further information in the months ahead on the thought process regarding how long you stay on these drugs would be much appreciated.
I’ m so happy for you! Congratulations!! You give me hope. I have 7 months left in my I+V+O trial and doing really well with the current exception of pretty miserable mouth sores. Thanks for sharing your great news. Tom
If you ever need any help on selecting the right mouth sore temporary remedy ... I have done everything there is to do and would be glad to share what I do
Thanks so much. I would love to know what you have done to manage mouth sores. Did you have them for a very long time? At this point I haven’t received any help with this from my trial team. I have tried a couple of OTC mouth washes and oil of oregano. Tom
My husband has been in the same trial since April 2019. He goes completely off in July of 2020. Dr. says that all of his blood work is in normal ranges. We are so excited for you.
Thank you for sharing your positive news. This means so much to so many of us. Brightened my name. Looking forward to seeing my Doctor and asking "Hey what about me on this combination?"
Well they did a regular BMB and that came back as NO morphological evidence of residual disease Then they further tested the bone marrow ..something about sensitivity I am not very knowledgeable like most people on here so I’m not sure what the further testing was .. Thanks for the congrats I hope the future holds
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MRD negative
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