I’ll ask. I’ve been asking for months to have the PSMA test. I was hoping to have that done before he started chemo this time.
As he was leaving the hospital last week, the onc said he thought he’d like to have Joe get the PSMA…..he seemed shocked when I said I’d been asking his colleague for months….what????
Some oncologists seem to feel that if you're already metastatic there is no reason for a PSMA. If it's the best imaging option out there I don't know why they would feel that way.
Right! And not all chemo is the same! Most of my mets are in bone (and I expect active recurrence here first)... I will want a chemo with bone-affinity like Xofigo (Radium-223), not just a general chemo such as a taxane.
I'm about to enter the Dora trial. Docetaxel (which alone will be beneficial for me at this time with progression after initial Docetaxel (Taxotere) 3 years ago and Zytiga which started failing about a month ago after one year of use.
Its Docetaxel plus Ra-223 or plus placebo. Unblinded so I will know if I got the Ra-223 or not and if I don't get it in combo in the trial I can get it after the trial and my Docetaxel infusions maybe with Provenge. I bow to my treatment team before committing or deciding and listening to their views.
Interestingly something Dr. said I hadn't heard was although we know less SE's from Cabitaxel it is harder on bone marrow.
As to Cabazitaxel vs. Docetaxel at this juncture which is best for the now further mutated cancer. It's felt that my PC since responded well to first Docetaxel will again respond well. Other reasons as well especially if I am lucky enough to get the Ra-223 vs placebo. Synergy.
Thanks, CS. Your response is fascinating and definitely represents a rethink for standard-of-care as I've experienced it. It is cautionary tale to me about keeping a long held "understanding" (well, since January 2017, when my Taxotere treatment ended...) that I would most likely develop taxane resistance, and while future chemotherapy could possibly involve the "next level" taxane of Cabazitaxel, the "real" treatment would most likely be a bone-targeted treatment (e.g., Ra-223).
Something fascinating from me is I think a bridge too far lol.
But what you said is interesting though. Especially since when like you I thought about the future when the initial Docetaxel, followed when PSA rose to initiating Zytiga failed to keep it down I thought more in lines of chemo again with hopefully a re-set of the playing field so that then Xtandi could be initiated. Cabazitaxel for my pea brain seemed a good fit for the 2nd chemo (anecdotally a lot of people here get it, milder side effects, possibly better than docetaxel for the cancer that has mutated over the years) but this idea that I more than likely have majority of mutations still that I had at diagnosis so docetaxel should be effective again was new to me. Luckily too with the trial is I will have extensive genetic/mutational/somatic etc. tests.
So anyway long story short your vision of your next treatment was Ra-223. I factored that in for myself too but for some reason I thought of it as later in the game and or if I had pain from my bone metastases which I thankfully have little pain from despite still having them extensively.
I think I saw that you have had Provenge in the past or maybe that was someone else.
Anyway Provenge has some possibilities of benefit as an add on to Ra-223.
Hi My husband has done 4 infusions of Docetaxel and the PSA has risen steadily from 99 to 468; plus bone scan shows progression. We are ignorant about anything else as they would not give another scan in the UK. However, as last, the MO has agreed to give Cabazitaxel. He is reluctant to do the addition of Carboplatin despite us showing him the trial that T_A shared on this platform. He is going to see if his team agrees with it but we are not holding out hope. The PSMA scan in June being mixed, we feel like our options are limited if Cabazitaxel does not work. Have you been offered Cabazitaxel? We are looking to see if my husband is eligible for trials in the UK. I will post on this if the effort succeeds. Wish you the best of luck in the meantime in finding something suitable too.
I was just told that I'm out of options. When to a specialist in Cleveland and he said that trials are not an option for me. PSA is doubling every couple months and right now it is at 2 which is low. So the next step is chemo when the PSA gets higher. Been doing great on Zytiga for about 5 years. Scans showed that the cancer is everywhere. What's crazy is that I'm still harvesting firewood and still quite active.
Right kind of. Anyway chemo is the first of your next future treatments. You had a 5 year run on Zytiga now time to move on sequentially to next SOC treatments. Your dr.s statement of no options doesn't make sense but maybe I'm missing something.
Not sure why your Dr. said no trials for you. Maybe he just doesn't want to bother? Your far from the end of the line.
Even though you have seen 2 different MO's I might suggest seeing one at the Cleveland Clinic which is an hour drive maybe for you. Im kinda serious about that.
I'm no expert and again maybe I am missing something in your case but I would seriously get an opinion from an MO at Cleveland Clinic.
Possibly make a new post with title along the lines of "looking for recommendation of MO at Cleveland Clinic".
I see Cleveland Clinic come up in the posts/replies here in the forum pretty often.
I went to the Seidman Cancer center. It is one of the largest cancer treatment centers in Ohio. UH Seidman Cancer Center is part of the National Cancer Institute (NCI)-designated Case Comprehensive Cancer Center at Case Western Reserve University, one of 50 Comprehensive Cancer Centers in the country. Patients have access to advanced treatment options, ranging from a pioneering stem cell transplant program founded more than 40 years ago and immunotherapy to the first and only proton therapy center in northern Ohio for adults and children.
I guess I remain confused. Maybe I'm not seeing something in what you've shared, current scans, somatic/tumor markers etc.
But someone who starts to have progression on Zytiga especially someone who got 5 years out of Zytiga has options. I'm not the brightest bulb in the building but that much I know. Especially after you complete the chemo being recommended there are more treatments in the pipeline. Surprised Dr.'s haven't discussed those with you and claim no more options. Very weird.
My cancer was discovered when I went to the ER due to extreme weakness. My blood was extremely anemic, and I had bruising on my legs and stomach (from a doctor's visit a week earlier). See the real problem was that my family doctor never gave me a PSA test, never for over 15 years. Maybe because I worked 6 days a week in the factory or maybe because I've always been healthy and active. But I had full physicals from my family doctor and my place of employment (4 detailed pages from them) for 15 years. Anyway, I went to the ER and was given a room. My PSA was 850, So 3 days in the hospital, 4 pints of blood and I was sent home. The cancer was everywhere, bones, organs, lymph nodes, just everywhere. My alkaline phosphate number was 3000 (should have been 150 or less). So I'm way past local treatments. I was told that my recovery was amazing. I've had 5 good years and now looking at more treatments.
Talk to MD Anderson about trials. When my husband was diagnosed as Stage 4 in 2016, his oncologist recommended SOC treatments. He had 4 treatments of Provenge almost immediately. It kept his PSA level for about 6 months. Then we decided that before doing any other SOC treatments we wanted to see what other options we had. Many trials have prerequisites and we didn’t want to do anything that might preclude him from participating in one that might work.
I called MD Anderson and talked with a new patient representative about his situation and explained that we wanted to explore all options ( you can find the contact number on the page to request a new patient appointment). They had a trial starting that he fit the profile for and we had our first appointment within a couple of weeks.
His history sounds very similar to your Joe. He was originally diagnosed in 2005 at age 55, had a prostatectomy in 2006. Afterward, his PSA stayed at 0 for almost 5 years then reappeared. This was 2010. He had pelvic floor radiation for 8 weeks and started Lupron every 3 months for the next 6 years with annual scans. When he was told it had progressed to stage 4 it had metastasized to his bones .
Six years later, he is on his 2nd trial at MDA. He also had 13 chemo treatments about a year after his first trial. Those were rough and we hope to not have to do that again. He’s almost 2 years into his 2nd trial now. He’s 71, stays active and feels good. We exercise and try to eat healthy, but no extreme diets - just normal meals with a variety of vegetable side dishes. His PSA dropped from the 40s to a little over 4 on his current trial and his existing lesions have shown no progression. Unfortunately, his PSA started climbing again a couple of months ago, but so far there has been no change in his scans. This trial was in Phase I and was very easy on him with essentially no side effects. He takes 4 pills twice a day. There is always a risk with trials but so far his experience has been good. The doctors at MDA are wonderful and we are very glad we decided to talk to them. His current Dr. is keeping him on this trial for now since the scans have remained stable, but has also reassured him that there are several other trials that he would be a good candidate for if he has to stop this one.
Doing a trial IS definitely a time commitment, but that is likely the case with any cancer center. Most trials require frequent bloodwork and scans to monitor the drug effectiveness and make sure there are not adverse side effects. This one requires that he meet with the Dr. every 28 days and that he get scans every 3rd visit. Since we live in Atlanta, it is a lot of flying, but well worth it since he feels so good. He also has a local oncologist here that coordinates his care with his MDA Dr. That lets him get certain things done locally (like the chemo and Lupron) which helps. It sounds like you are open to travel for his care so hopefully this is an option.
I wish you the best in your search. Don’t give up the fight. There are new options being developed all the time. I understand the constant worry and anxiety that goes with this disease and know how hard it can be to stay positive, but we have to believe that this beast can be defeated.
Check out the website massivebio.com. They conduct a search of appropriate clinical trials at no cost to the patient. A board of physicians make expert recommendations on your best course of treatment.
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