It has been a looong time since I posted, missed you guys. Sorry this is long, I am confused and a little scared.
Quick recap: diagnosed in 2010 at age 44, got robotic RP, then eventually radiation, then chemo (taxotere/docetaxel) and adt (Lupron) in 2016. My psa stayed slow growing for awhile, kept down by 10 months of casodex before growing. I started Zytiga last November, which showed promise for a couple months before my psa started rising, still slowly. Then it all went to hell.
In April I had a cystoscopy (follow up to getting an AUS implant) that showed my bladder to be fairly healthy, no signs of problems, then I started peeing blood.
At this point I kept getting sick regularly, and also UTIs, which I attributed to exhaustion from my new career as an elementary school teacher. When my urologist tried to look at my kidney in early June, my bladder was blocked with cancerous growth, while my PSA was still rising slowly. Turns out my Pca was inhibiting my kidney function so MO recommended chemo asap. She said that up til then my cancer growth was not being reflected by my PSA.
Is this common? 12 years in and my cancer decides to go nuts? I planned to start chemo 2 weeks ago, but ended up in the hospital with a staph infection/sepsis (from my new port!) so it was postponed. I start 12 cycles of Cabazitaxel tomorrow. My MO expects me to handle it well, I hope she is right. Last time was kind of awful.
Can y'all share your experience with Cabazitaxel, particularly if you have gotten another kind of chemo?
Thank you everyone, and take care o' yourselves. School starts in 2 weeks, whoo hoo!
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BillNIttles
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Thank you Allen.My PSA isn't necessarily low, just unpredictable. The last 2 months my doubling rate was 5 weeks, seems my PSA is trying to catch up.
I will discuss carboplatin with my MO, I imagine she will be receptive. I have been so ill this month I did very little research, but need to get started now.
You could request a direct biopsy of the mets to do histological, IHC and genetic studies to determine if there are mutations which could made the cancer susceptible to treatment with drugs such as olaparib, rucaparib, keytruda, chemo with platinum compounds etc.
I would also get a consultation with Dr. Dorff about immune therapies (Car T cells and Bite compounds):
These PCs progressing without producing much PSA are difficult to treat and even when they could be controlled with chemo and platinum compounds for a while, one has to think about clinical trials with new therapies, and these doctors could help IMHO.
Tough situation Bill. And chemo will add some degree of SE burden even though, hopefully, it will be helpful for awhile. Appears to me that going back to the classroom soon may be too much of a stretch and stress on top of the current situation. Would you consider a medical leave or even retirement?More treatment options to consider now, both in and out of trials, with advanced mCRPC. Best regards. Paul
We are going to have to see how it goes, gotta get my kidney issues taken care of first. I expect to feel better before I feel worse. I have full support of my admin and teachers and I am setting up intermittent medical leave as needed, but I have no interest in retiring. I can't anyway: I started my school career last year and need the insurance.
It will be interesting. I teach music and dealing with this will change how I teach, probably for the better. I am not too worried about side effects, been here before and I know how to to deal with it.
Will be taking the next steps as needed. Thanks again, Bill
Hi, I had 15 Taxotere sessions in 2015 and then 6 more in 2020. Just had my 12th Cabazitaxel and have 6 more scheduled.I haven't had much of a response with Cabazitaxel, PSA still creeping up :-(. PSA was at 5.1 at the start of the 3rd round and only got to 2.4 in March 2022. The latest PSA at 3.9 from July 13th.
Lost hair pretty quickly with Taxotere, but I'm rockin' long *ss hair thru the Cabizitaxel. Side effects were similar with both chemos. Fasted 2 days before each to offset side effects.
I started cabazitaxel last Monday, and quickly remembered what chemo feels like. My 9 rounds of taxotere 2016 brought my PSA down to undetectable but it came back 6 months into my 2018 adt vacation. So hormone therapy played a part of course. Zytiga failed quickly, so I am clearly castrate resistant.
I appreciate your help, it helps to know what you have been through. It would be nice to keep my hair. My friends still joke about my "big shiny chemo head." I forgot all about fasting before chemo, thank you for the link. I will be focusing more on that.
I hope you get cleared soon for carboplatin, and it is successful. I will be discussing it with my MO soon. My life needs to stabilize a bit first, and chemo is the big first step.
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