Stage 4 since 9/2016 with small bone met on spine and 2 lymph nodes and PSA of 5.8. ADT initiated. PSA nadir 0.1 and then gradually increased. Bone and CT scans this past September showed prior lesion not visible and nodes appear normal with PSA 1.2. Three months later (December 2019) PSA 2.1. My urologist indicates that it appears I am becoming castration resistant.
Assuming I am castration resistant, what would be the next step in SOC. I have been on Lupron alone since 9/2016. Also, can anyone recommend a medical oncologist in SW Florida?
Written by
33947
To view profiles and participate in discussions please or .
The Moffitt Cancer Center in Tampa is one of the National Cancer Institute Designated Comprehensive Cancer Centers. See: cancer.gov/research/nci-rol....
Here's Moffitt's website: moffitt.org/. Searching on the site for prostate cancer medical oncologists, four names came up, one of whom (Dr. Zhang) looks like he's doing pretty advanced research in metastatic prostate cancer.
I like the idea of working with a research scientist in the area of my disease, though I have to admit that some of them aren't so great with patients and some docs with no research affiliation turn out to be great doctors.
They told me I was castrate resistant when PSA started doubling while on Firmagon and Eligard only. Started Xtandi and it knocked it back down..... I think there are different levels of castrate resistance these days.
when my PSA started doubling every 6 or 7 weeks while I was on Firmagon and Eligard alone, they decided it was time to add Xtandi to the mix...... I have had an outstanding response to Xtandi with my PSA now at 0.000. The only problem is the ADT drugs have caused me to develop heart issues, so I have had to stop all ADT for the time being.
Doing much better since going on ADT vacation a few months ago. Heart issues that started to show up shortly after starting ADT were mostly palpitations and skipped beats. After being on xtandi for a few months, I also started to have shortness of breath when walking. Turns out I had developed a 70% blockage in left coronary. So far they have been able to keep it in check with meds, but if it gets worse, a bypass is in my future. Not sure what I will do when it’s time to start ADT again
I am so sorry to hear this. Hope you are doing OK and not stressed out. I had a pacemaker put in in January. Recently told I too had the skipped beats. Not sure what the solution is.
Yes. First was the pacemaker and then in the past few months the skipped beats. I have been on intermittent ADT (Lupron and cassodex) for 10 years now.
After I was diagnosed as stage 4 I had my case reviewed at the Mayo Clinic and later had a consultation with one of their oncologists. I also have had consultations at the Moffitt Clinic. Both centers have participated in giving me Lupron injections. No one has suggested Zytiga in addition to the Lupron. I did take Casodex briefly when originally stage 4.
No shit TA, I had 300 pages of records sent to moffitt from MD Anderson in Houston for a second opinion and the MO I met knew less than me about my particular cancer.
I would recommend contacting Florida cancer specialists and research institute in Brandon. See the medical oncologist Dr. Mark Robbins, the best in central Florida. The Florida Cancer Institute is the largest private institute in the state.
I believe in the UK, you get early chemo with ADT. But after chemo, you are only on Lupron. Maybe NICE will get on board with multiple hormone therapies if the price of abiraterone comes down.
My wife has been being treated for metastatic bladder cancer since oct 2018 by Dr. Jonathan Rosenberg, who is the chief of the Sidney Kimmel Institute at MSK in NY. We are in NE FL, and to avoid travel to NYC during winter, Dr. Rosenberg referred my wife to a physician that was one of his fellows when he was director at Harvard/Dana-Farber. She is in Sarasota at a private cancer center, Dr. Elizabeth Guancial. Not sure if she treats prostate. Dr. Rosenberg (check his credentials) said he would send his parents to her, and commented that my wife would probably like her so much that she wouldn't return to MSK in the spring. That's good enough for us. Couple links:
Thanks for posting regarding Dr. Guacial. I made an appointment with her and she has been treating me since January. I have been very pleased with her approach. She is very knowledgeable regarding PC and treatment options and communicates very clearly. Thanks for the recommendation.
Glad to hear that you are happy with Dr. Guancial. My wife sees her today for another treatment. I am going to pursue the use of Vantas rather than Lupron, per Nalakrats. Begin next week.
33947’s story and the responses to it leave me confused about my own situation and treatment. Seeking your collective wisdom, advice, helpful hints, whatever...
Recap: I was Stage 4 oligometastatic (1 tumor on R. Inferior pubic ramus) at Dx in 05/2015. Gleason 7 (4+3). PSA 4.65. Have been treated by PCa specialist M.O. at the Mayo Clinic in Jax since then. Have been on 6 month Lupron since then. My one tumor faded into oblivion with the ADT, and my PSA dropped to undetectable, where it stayed for 4+ years until late 2019. I did course of docetaxel a couple of years ago when it 1st became available to hormone sensitive patients. Was also on daily bicalutamide until about a year ago when my PSA took its 1st rise above undetectable. He had me stop the bicalutamide and continue on Lupron only since then. CT scan on 12/26/19 showed 6 new bone “hot spots” that were not evident on my prior 2/5/19 scan, including apparent (but as of yet unconfirmed) re-emergence of my original pubic ramus tumor (Maybe I should have had SBRT on it back in 2016?), R. Posterior 6th rib, T9 & T11 vertebral bodies, body of pubis, and L. Medial iliac bone. Prostate and seminal vesicles are normal in size. No pathologic fractures The scan report shows my current Dx as CRPC. Impression: multiple sclerotic foci visualized in bone as mentioned above are “worrisome for metastasis.” Not sure what he meant by “worrisome for” since to me it seems to be pretty vague, neither confirming that these are in fact new metastatic tumors, nor ruling out the likelihood that some or all of are metastases.
I meet with my Mayo M.O. in 2 days (1/9/20) to discuss the CT scan and where we go from here. I have already told him repeatedly that I want to be proactive and aggressive in my treatment. In spite of the scan report I actually feel pretty good. I’m totally asymptomatic in terms of bone issues, can golf 18 holes no problem, do moderately strenuous yard work, and my fatigue level is no worse than it has been when I boarded this train nearly 5 years ago. Go figure.
I have toyed with the idea of jumping the Mayo ship and going to Moffitt in Tampa. It’s only 85 miles (v.s. 140 miles to Jax), but I’m not confident that they provide any better care than I’m getting at the Mayo.
I’m guessing from my prior visits with him that he favors enzalutamide (Xtandi) added to continuation of Lupron as my next step. I don’t think I currently qualify for any bone-directed therapies (e.g. Xofigo) since I am not symptomatic. I read the PC News that one of you sent the link for which suggests Zytiga before Xtandi.
I welcome your comments, advice, and suggestions as to how I should present this when I meet with my M.O. on Thursday.
O jumped from Mayo to Moffitt and didn't see any difference/improvement in their patient approach. I ended up with Dr.Elizabeth Guancial at FL Cancer Specialists in Sarasota. I've been very pleased with her.
The last thing I want to do is cause you concern, but thought I'd reply with our experiences.
My wife is being treated for metastatic bladder cancer and I have advanced prostate cancer. See my reply above to 33947 re Dr. Elizabeth Guancial (check her training, credentials and awards). We also have had direct experience with Mayo in Jax, where we live. In my wife's first meeting with an MO there, at which I was present, she was told, quote: I'd rather the disease kill you than I kill you. end quote. There were several more similar statements made by the MO, but I won't belabor them here. You could pay me to go to the oncology department at Mayo in Jax, but it would take seven figures. In my case, I have seen Dr Wassim Abida at MSK, Dr. Samuel Denmeade at JH, and Dr. Daniel George at Duke. I hope you are able to get high quality care wherever you go.
I was diagnosed at Stage 4 with PSA of 4.9 with bone Mets in 2014. Wanted to treat aggressively so I visited Sloane Kettering in addition to my MO at UNC in chapel Hill and the two doctors still coordinate my treatment plan. Started Lupron and taxotere. After finishing Taxotere PSA was undetectable for a year. We went PSA started rising started Xtandi and had radiation on the bone mets. Was then undetectable for two years.Zytiga was another option. My advice is to get two opinions if you can on treatment options. Good doctor's have no problem with you asking to consult with a second MO.
You need to be clearer about your PC lesions which means good imaging.
1. At your stage I would recommend a PET-PSMA +/- PET FDG, even at this 'low' PSA, a decent chance to detects mets.
2. If you have oligo mets (low numbers) especially if in soft tissue only, hammer it with Lu177. It will cost you and you will need to travel; I suggest Australia, but Germany and others offer it. I believe this treatment is best given early in the disease course. See my profile and others on this site.
Otherwise I have nothing more to add; you do need systemic treatment of some sort. =Rob.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Castration resistance
Is this castrate resistance?
Is this pointing to cancer becoming castrate resistant?
