CLL, Bladder Cancer and BCG coming up for me

[Jvanfire]

I've been on Ibrutinib for about 1 year, diagnosed in 2009, first round of chemo in 2012 at Duke Med on a clinical trial stopped because of extreme hemolytic reaction. Chemo infusions again in 2015, worked for a couple of years. Started Ibrutinib in April 2018.

Prostate resection in D3cemer 2018. 2 weeks ago CT scan to check on suspect lymph nodes showed an abnormal bladder site. Cytoscopy this week showed a significant growth inside the bladder that will be resected and biopsied next week.

I'm prepared mentally and emotionally for another cancer. I've always been a realist about health- 30 years as a Firefighter, lots of exposures of sorts people don't even realize; so I know and accept that one form of cancer or another will be my end. At 70 I just don't want this one to be my end .

Anyone to offer thoughts on CLL, Ibrutinib and what's to come? I feel blessed that I have the medical team I love and respect here in coastal N. Carolina.

Jvanfire in N C

[cujoe]

jvanfire,

Also a CLL patient at Duke and, as a 2-time winner of the cancer lottery, also have prostate cancer. I have been fortunate with CLL to have not needed treatment and labs have improved over the 12 years since I was diagnosed. Not so lucky with the prostate cancer, as I had surgery and adjuvant IMRT about 5 1/2 years back. Bad pathology and cancer returned after three years. One round of ADT treatments got PSA back to undetectable and I have been on treatment "vacation' for last 15 months. Now I'm just "keepin' on keepin' on" for as long as it lasts.

The message in the above is not to panic. Good doctors + good meds + good attitude + good diet & lifestyle = good outcome. All patients remember the days they get bad news. Hopefully, you will be able to also remember the days you get the good news; i.e., surgery was successful, treatment is working, cancer is in remission, etc. At 71+, I have outlived both my dad and my older brother. So, I like to think of every day I get as a gift, and I try to remember to treat each and every one that way.

Lots of people here can help you with any question you have about CLL treatments. Just ask. Be Well - cujoe (also in NC)

PS Thanks for keeping us safe for all those years - preventing/fighting fires!

[PlanetaryKim]

I've been on ibrutiinib for 16 months, and finished chemo-radiation for a second cancer (anal) end of August. Am doing well on both fronts at the moment. Ibrutinib has worked really well to control my CLL, with no real side effects to speak of. And I was able to stay on it during my chemo-radiation this summer. Good luck to you.

kim

[maggiesgrandmom]

Praying for you, and thank you for your service as a Firefighter. Hang in there!