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April 12, 2018
Brian’s labs continue to move in the right direction with his hemoglobin starting to climb (no doubt because of the fantastically iron-rich homemade Cajun gingerbread I feed him). He is still weak and sore and tired, with night sweats and a low body temperature, but overall is clearly moving out of the darkness and into the light. Patty
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9 Responses
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So Happy To Hear!
Keep Going Brian!
Patty,
Please share your gingerbread recipe.
Warmest,
K
Your gingerbread is famous! Maybe we need a recipe section on the CLL website 🙂 Glad to hear things are moving in the right direction.
Surely he’ll keep moving from darkness to the light. Just keep feeding him that Cajun gingerbread.
Sending continued best wishes for a complete recovery. Thank you for keeping us updated on Brian’s progress. Looking forward to hearing more good new soon.
Regards,
Nan
Best to Brian.
If he needs anything to do between cold beers, I’m confused about his interview with Dr George Fellows re Venetoclax + Rituximab. At 2:38 comment starts that the BTK inhibitors don’t really give deeper or longer remissions (than chemo-immuno?). I understood that Brian with 17p deletion had 5 years of excellent remission with Ibrutinib?
Not too bad in my book.
I believe what Dr. Follows is saying is that adding an antibody such as Rituximab to ibrutinib or other BCR inhibitors doesn’t improve outcomes. This does not appear to the case with venetoclax where an antibody seems to improve responses.
John Murray-
So happy to hear that you are moving in the right direction. Yes, eat whatever it takes !!
I’ve been on the journey with you, I remember when you were lifting weights in your hospital bed, before you SCT
You were filled with optimism. I loved that. In Oct.2010 I got my own SCT. It didn’t cure me either. I ended up with
a mixed chimerism. And now I have been on Ibrutinib for 49 months . it’s been a great drug. but for how long ?
Best wishes
I got 69 months out of ibrutinib with 17p del and a complex karyotype.
Hello Patty and Brian , that gingerbread does sound so good !!!! Glad to hear things are going in the right direction still praying for full recovery and MRD NEGATIVE for life !!!