Friends,
My husband’s PSA doubles in a few months time. His level is 4.5. He is on 420 mg of Imbrutinib daily. He will have a biopsy after the Holidays in January. Has anyone developed prostate cancer after CLL/SLL diagnosis? This is my husband’s second battle with CLL/SLL. He’s been on Imbrutinib over a year. Kinda scared for him and down.
I have both prostrate cancer and CLL. Since both are slow growing I’m not sure which one I had first. Not to worry, both diseases are very treatable. I had a PSA over 4 in 2008, finally got over 10 in 2017 while I was in treatment with I + V for CLL, clinical trial started in Jan 2017. I had many biopsies for prostate cancer and finally got to 4+3 in June of 2019 which required treatment.
The great news is that I got to UMRD non detectable on my CLL in March 2018 and stopped treatment. I received SBRT for prostate cancer in August 2019. No significant side effects and great PSA result since then.
Hang in there, get the best team you can.
Also there is a great prostate cancer group on HealthUnlocked too. Respect Tall Allen opinions and check out his fantastic website.
Thank you!
Hawkeagle I also thought that there was a possibility that I had CLL in my prostate instead off prostrate cancer. But I could not get doctors to confirm. Both are characterized by overexpression off BCL2 so it seems likely there is a connection.
How did they confirm it was CLL instead of prostate cancer? Will treatment be different for prostate since CLL is confirmed?
It’s baffling to me because his levels in bloodwork are very low and he is responding well to Imbrutinib. If, indeed, it is CLL/SLL in the prostate why would his levels be low and under control yet, PSA is high? I am not knowledgeable in this area at all. It feels overwhelming.
Thank you so much! I am so in love with my husband and want him to have the best care. I want to be supportive of him in the way he needs.
clinicaltrials.gov/ct2/show...
Each cancer is different, however this is an interesting clinical trial using venetoclax for prostate cancer. Perhaps you can ask your husband's doctor about adding it since it is a known powerful drug for CLL and may help with that secondary cancer risk
I’m not even sure if he has a good doctor for prostate problems much less prostate cancer.
It’s possible your husband’s high PSA is due to prostatitis or other reasons. It is true that if you have prostate cancer its a quagmire to try to figure out what to do. Fortunately it is generally slow growing so if you get a positive result take your time, get educated and consider all the options.
Hi Buzzjacket
Yes, my PSA was up to 17-18 but doctor kept testing me for possible prostate cancer to resolve as he did not think it was prostate cancer. His final diagnosis was prostatitis, few weeks of anti-biotic solved that. Blessings.
Hawkeagle, I had an MP MRI and it was negative. But the biopsies showed consistent increase of prostate cancer until I got two 4+3 samples and could no longer stay on active surveillance. No real lesion or tumor to target with HIFU or laser ablation. I chose SBRT at UCLA. I’m pleased with results so far. No ED and minimal urinary side effects. I was on Venetoclax for 15 months but it did not knock down the cancer in prostate. I suppose it could have been cll. But I could not take chance when It got to 4+3 so I chose the SBRT.
They said it was rare that an MP MRI would not pick up 4+3. They also told me it was prostate cancer not CLL. Also sent to Epstein at Johns Hopkins to confirm. But I’ve been skeptical they can tell difference. Perhaps without reason. I might have liked to send sample to your doctor at MDA but too late now!
I was diagnosed with CLL and prostate cancer in the spring of 2014. Prostate MRI confirmed that the cancer appeared confined to the gland. I underwent a targeted MRI/Ultrasound fusion biopsy. This is a very precise way to biopsy and will likely become the standard of care. Unfortunately I needed a prostatectomy but I am doing well. CLL seems to progressing now and I am very neutrapenic but still on surveillance only. My advice would be to go to a major cancer center where a state of the art prostate work up can be efficiently done, and avoid your local community general urologist. I also agree with a previous post to find prostate cancer info on the Inspire Prostate Community website. Because prostate ca is typically slow growing, you have time to consider your strategy and obtain more than one opinion from centers of excellence. I appreciate the fact that this may feel overwhelming but you will feel empowered by having more knowledge regarding your options.
It’s interesting my PSA number almost tripled, after 9 months on The clinical trial at Dana Farber, Acalibrutinub, Venetaclax and Obinutuzumab. Went from 1.5 to 4.5.
Waited 6 months and just had it retested this week. It is now at 2.5. The Doctor told me not to worry about it.
I am 68 and had an 8+ PSA in June. My urologist recommended biopsy. Due my history of multiple infectious diseases including sepsis I expressed concern for the risks of infection from the biopsy. Even though my urologist assured me that the infection risk is very low he agreed to postpone the biopsy and do another PSA 3 months later. He encouraged me to eat tomatoes and drink tomato juice. I did this while continuing past practice of avoiding dairy and coffee (sad face). I have abstained from those two things since 2012 when my PSA was 10+. It dropped to 6+ within 2-3 months and I dodged a biopsy then.
This year my PSA dropped from 8+to 6+ in 3 months which satisfied my urologist. He also did the usual not fun exam and a bladder voiding ultrasound which was good.
Fortunately I like tomato juice 😊
Best wishes!
I'm surprised they want to do a biopsy with a PSA of 4.5. My understanding that 4.0 is the threshold but I would think it's safer to wait 3 months and get another PSA. The first test may have been a fluke. Why the rush to do an invasive procedure?
Because it (the PSA) doubled in two-three months.
Oh I see. I understand your doctor's urgency.
Hawkeagle, do you know where to get 68ga PSMA PET scan? It was approved by FDA but only two centers in CA are listed there. Thanks,
Vlad11
MBL/CLL/SLL = argh!
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