Let’s hope you get a respite and some answers soon, Glen. Long thread so I’m not sure what tests you’ve had. Have you had an ultrasound to look upstream from the bladder? How about a test to look for...
Glen, I am very sorry to hear how much stress you're experiencing. I try to put the scary realities in a mental box somewhere outside the back door, but it can be a challenge. AZ guy, many patients...
Before subjecting me to a cystoscopy, they did an ultrasound to look for a problem up north of the bladder and, finding nothing, went ahead with the cystoscopy. The cystoscopy was painless. Uro...
Just spotted this thread, Glen. I've been dealing with radiation-induced hemorrhagic cystitis for a couple of years. It started four years after salvage radiation. Went for a possible cure, 60 trips...
Thanks, Djin & Cyclone. I can see that I need to accept another treatment into my life to avoid loss of bone. I'll ask about my doc about the pros and cons of Fosamax vs Prolia, which are two...
Med Onc is recommending 3 years of Fosamax because I’ve just crossed over the line to osteoporosis and will likely have more ADT in my future as the PSA is again on the climb. I’ve got two concerns:...
Look into hyperbaric treatment. It is successful or partially successful for some who have radiation-induced cystitis. Non-toxic. Side effects are rare....
What a wonderful turn. Thank you for sharing Jeff’s new grounds for optimism!...
Then there's the variant of people who arrange the books on their bookshelves by color. I've spotted a few of these oddballs on Zoom calls and wonder how well their system works for retrieval. I do...
I've solved the problem. I read the first quarter of each book. That way I can get through four times as many books each month. What am I missing?...
I have followed the threads related to Vitamin D here and elsewhere for years. I am not a Vitamin D skeptic. I just try to follow the science and the bottom line seems to be that there is a great...
Thanks for clarifications, Mattam. Don, if your insurance will pay for off-label use of apalutamide for nonmetastatic CSPC then you may be able to simulate assignment to Arm B of the study. That was...
Hey Don, I am in AFT-19. I was randomized to ARM B - degarelix (aka Firmagon) + apalutamide (Erleada). I started treatment in February 2018, nearly 3 years after my prostatectomy and 1 year after 39...
Wearing a mask when you have a cold, the flu, or COVID-19 will reduce the likelihood of your transmitting the disease to others with whom you interact. Since we shed the virus and can infect others...
Every case is different, but I also had an RP 3 years ago. My vacation from worry was shorter than yours. My first sign of PCa recurrence came 11 mos after surgery although I was getting...
AK, I don't think the Decipher test results have yet made the slightest difference in any of the recommendations for treatment from my radiation oncologist or medical oncologist. Perhaps it would be...
AK123, If your PSA doubling time is less than 9 months and your PSA gets up to .5, you might qualify for a clinical trial described here . Apalutamide (Erleada) and abiraterone acetate (Zytiga) are...
Thanks for the brotherly replies. Teddy9 has made a good case that the pre-ADT test may be useful in making a decision about therapy at a later date. That's enough to push me into doing the DEXA...
Teddy9, TA's list of trials does not include the one that I am enrolling in. It's called "A Phase 3 Study of Androgen Annihilation in High-Risk Biochemically Relapsed Prostate Cancer." I first heard...
Back in August, I began the process of deciding whether to participate in a clinical trial: I subsequently considered the alternative of metastasis-directed radiation therapy but a Ga68 scan turned...
Denis, One side effect that is highly likely with either surgery or external beam radiation therapy is ED. One of Allen's blog posts shows that men subjected to EBRT do comparatively better, but most...
I've had elevated glucose in the pre-diabetic range for over five years. My endocrinologist did not like my 25 ng/ml D3 level. Low D3 is associated with diabetes as it is with prostate cancer. He...
Denis, ASA's post clarifies how the Decipher test was useful in your case, helping you decide to rule out AS. In my case, the Decipher test was not run until over a year after my RALP so it played no...
Denis, if I knew then what I know now, I would certainly have looked more deeply into HDR brachytherapy before making up my mind about which way to go. UCLA's Dr Jeffrey Demanes, one of the leading...
I second Tall Allen's recommendation of mindfulness as a way to deal with the chatter of the mind. Let me also put in a good word for yoga. Until recently, I had no time for mindfulness or yoga, but...
Paxton, Right. Even the standard (and much criticized) 220 minus age formula would estimate a maximum heart rate of 152. The electrophysiologist set my maximum at 150 without any idea whether my...
I don't know my gadget very well, but I have been studying posts over at pacemakerclub.com and I think it really is a problem if the max rate is set too low. I have a/v heart block so the function of...
Oh, you guys are right! I forgot about the leads. I'm still learning about my new "sports appliance." I think of it that way because the only symptom of my arrhythmia was difficulty climbing hills on...
Paxton, When your current pacemaker battery runs out, you can look into replacing with an MRI-safe pacemaker if it makes sense to you. There are some tasks that are better done with MRI, some better...
Thanks, Allen. I understand the 70.2 Gy of SRT delivered to my prostate bed far exceeded the exposure from the cone beam CT, although I'm still curious how the effective radiation exposure (in...
Recently had a pacemaker installed (Medtronic "Sure-Scan" OK for 3T MRIs). Before surgery, I clarified with the surgeon that I am a prostate cancer patient who will likely be getting many scans and...
Charles, Good to hear from another UCSFer. I appreciate your encouragement to consider the trial. Considering the trial overlaps with coming to grips, intellectually and emotionally, with the new...
Thanks for the suggestions, Gear. The Prostvac trial looks like a possible fit, but the only locations for monthly followup are on the East Coast: NIH in Maryland, Dana Farber in Boston, Memorial...
Thanks, TA, Your extensive response is much appreciated. Yes. Calculated from two points, the PSA right before my radiation to my PSA 3 months later, my DT was 5.7 mos. I'll get another reading in...
@Fairwind: Yes, I'm a lab rat now, but that's one of the reasons I chose to commute to UCSF in the first place ... availability of experimental treatments. As you say, the degarelix will probably...
Wow. I have a big decision looming. With my PSA rising after salvage radiation 6 months ago, the next step appears to be ADT. I know ADT works to prolong life although I dread the side effects. My...
Wow. Didn't know you could take that much further radiation to pelvis after SRT. My RO decided not to fire away at the lymph nodes along with the pelvic bed. I'll let everyone know what he says on...
George, I agree. I have no idea why my urologist's team ordered the Ga68 PET/MRI before they would refer me to an RO. The Ga68 test delayed this referral by several months. All told, it took UCSF 11...
As always, it's great to have good companions on this journey. TA asks what else can I do besides wait another 3 mos? From a clinical point of view, apparently nothing. From TA's response, I gather...
I was really looking forward to 3-month post-SRT PSA < 0.015, but it's .338, higher than .194 before SRT. I've rummaged through old posts and found a couple of forum members who had no decrease in...
Michael, It sounds like you are making the decision to wrap up your relationship with the business. I did something similar two years ago, shortly after my prostatectomy, when I retired from a job...
Absolutely good that it was 3 rather than 4 at the margin. Absolutely good that is was only 5% 4. You have good reason to take a breather from worry. I heartily second TA's advice to focus on the...
I'm jealous. I had to wait 12 days (!) to get my catheter out. Glad Jack can now focus on mending without having to mind the bag. And, for sure, there is a lot of good news in the pathology report....
TA, Is that formula based on Gleason and pre-RP PSA score valid in figuring the odds of LN invasion seven years after the fact? I don't understand very much about the natural progression of PCa, but...
ksk, I'm definitely not an expert but my RO mentioned that radiating nodes increases the risk of short-term side effects, e.g., diarrhea, if only because more of the digestive tract is exposed to...
fiddlecanoe, I'm also 3+4, so I tend to look at the world through that lens, but, unlike your pathology report, mine didn't show seminal vesicle involvement, positive surgical margins, and ECE. The...
In case anyone else wants to look up the article, the position of articles on urotoday.com changes rapidly and the article is no longer at the location mentioned in JayMot's post, but I eventually...
Tall Allen may be right that ADT would keep the cancer from spreading while you're waiting for your urinary tract to heal. I am curious whether this is a hunch or a phenomenon that has been studied...
dm1254, I think the link is fixed now....
Before rejecting AS, I would definitely want a second opinion from a clinician at a major prostate cancer treatment facility (like UCSF) where they have a robust AS program. All treatments have...