Robert, I am glad you found what works for you. I have heard most doctors talk about how the treatments are not particularly good for our bodies, even though they help us control the cancer. It is always one of weighing the risk/benefit situation. So that is why "watch and wait" is a good protocol for many, until we start getting the side effects, pain, etc. They have found there is no good reason to treat CLL before the symptoms become a problem, for most people. Treating early does not provide a longer life, in fact it lowers quality of life to treat too early. But it sounds like you had a more agressive situation that needed treatment, so you got it. Does that make sense?

So I notice this gentleman uses the phrase "well tolerated" without actually going into what the not so well tolerated side effects may be. Without doubt this class of medication seems to be a game changer and anyone who needs treatment, might want to consider it. I specifically have questions about reduction or inactivation of immunoglobulins. Already CLL/SLL patients are immunocompromised. I believe that infection is a major threat to patients. My question is, will this class of medication increase immunological risk. Zanubrutinib (Brukinsa) has significant immunological suppression and can lead to serious infections. This among other side effects such as bleeding issues concern me. For me, as I told my doctor, lumpy as I am, if constitutional symptoms are not present and lymph node size does not impinge upon any internal structure, if your doctor says you can still watch and wait, I will always choose NOT going on meds if possible but to be vigilant about yourself and your visits to doctors for surveillance.

RobertG, enjoy your exciting cruise. 2 weeks ? Amazing! Have a safe trip and relaxing time.

You are correct that my numbers increased a lot every month versus yearly. I also just learned my spleen was enlarged which is stage 3 CLL when I requested medication. I did not want excess damage from those "B" cells which could be anywhere those cells see something no working correct? Plus I realize the internal damage could not be seen at an office visit and I never had any lumps or bumps nor fatigue? I would rather stop the damage and risk possible ill affects (I did develop a strange cough which was an ill affect.) Then I discovered from a new doctor that my spleen was enlarged from an old MRI which none of my doctors discussed with me? I know if the bad cells mutate then they may not be controlled by the medication. Then it will be time for a new medication. I understand the BTK inhibitor can control good cells but I accept this issue. Now that I know my CLL is controlled with medication I am both mentally and physically healthy. I think watching and waiting is good for the really slow CLL which can last for years. I also think medical people should inform everyone about everything a person should know about CLL and medication so each person has enough information to make a healthy choice. I hope your summer will be as good as my summer which beginning next week will be a two week cruise first to Mexico then Alaska and Canada before returning to S.F. which is 120 miles west of where I live. Celebrating Long Life (CLL)