I believe in it! 4 1/2 months into it.. and so much more quality of life is back! I can be more self sufficient rather than requiring support from my daughter and close friends. My depression is much better with the changes and it’s also helping to reverse some of my renal failure so now I’m off the transplant list and not retaining so much fluids in my body. They are now going to be producing it in pill vs capsule form. They tweaked it a bit so it will be able to be taken along with my high blood pressure pills and kidney pills that contain minerals in them. Currently, I have to have a 2hr period (before or after)between the medications. So I have a very scheduled pill times set on my phone to keep track of it all.

I’m on the BTK Blocker Calquence but when getting diagnosed I had sever kidney disease too that was directly connected to CLL based on my biopsy results of kidney and bone marrow. I’m very anemic and have had several “packed”RBC” infusions to help with the low weekly lab reports. I love the ease of it, being able to treat from home. It’s very expensive, but my insurance covered 2/3rds of my monthly RX and the Pan Foundation has extended my grant for another 3 months covering my $3,300 copay. They have renewed this every three months as it is something that is a continual Rx that is taken “indefinitely”. I attended the Northern CA Blood Cancer conference last weekend and in the CLL breakout group, there was a lot of amazing data on the use of the BTK blocker when another major organ is directly involved (my renal failure for instance). I’m getting my life back! Less depression, lethargy, and mind fog. It works well with my kidney and high blood pressure medications too. Weekly labs help my team make adjustments to my other Rx to keep improving my renal failure.
I hope you get the treatment that will be able to attack your area of CLL.

Melinda, I’m so happy for you. Oh thise showers are going to be like a world of wealth. Enjoy! No infections, praise the Lord. Next step is gonna be that bike. You go girl. Hope your day is good! I remain prayerful for all of us.

Melinda,
Thank you for your response. I pray for all of us on this journey. I’m glad to hear that the med is successful. I will speak with my cardiologist before proceeding. Since my insurance denied the rx, I will have to write an appeal if I decide to take it. I’m pretty sure I will need assistance with paying. Still I must decide which oncologist to follow. One says watch annd wait and the other wants to proceed. I’ll know more after seeing cardiologist and after my visit with the first oncologist. I’m so glad to hear that you’re doing well.