The blood test corroborates the MRI that shows spread. I am talking with Dr Goodman
in the AM. Am I doomed? My PSA has never been 8. before
The blood test corroborates the MRI that shows spread. I am talking with Dr Goodman
in the AM. Am I doomed? My PSA has never been 8. before
Pretty sure you aren't doomed. Mine hit 7 middle of last year and now back down to .30
thank you. I am just wondering where everybody is on this site. I used to hear back from a few especially tall guy
It all changed in three months. this is what is scary to me
Been fighting it for 7 years and 8 months. Time marches on despite changes in my cancer. it is all good and manageable
I would get another PSA test to confirm.
Could you please fill out your profile if you want comments?
I just completed the history. thanks Tall Allan!
Thanks! I understand now. You are castration-resistant, so you can get docetaxel, perhaps combined with xtandi, Xofigo, Provenge... lots of options.
I had docetaxel in chemo, is there a use out side of that, like a pill?
Docetaxel is only available as an infusion.
I thought so , I had that in chemo three years ago. What about Pluvicto?
Yes, that is an option as well.
Hi Tall Allen. Spoke to Dr Goodman & asked my chances and he said without intervention "a year". with intervention, "years". I had cyberknife six months ago and PSA went down to to .1. It went up to .6 and then in the last 3 months to 8.5 The MRI showed seriously scary spread. Goodman says it has likely "mutated". PSMA scan set for Wend. he wants a genome test (my LDH went from 200 to 400) The ideas on the table are possibly Pluvicto but that is not the best when it is only in the bone due to red blood cell drop he said. Chemo (but not Docetaxel) Then possibly trials but he did not elaborate. I did Docetaxel three years ago and it is not much fun.
Hey Crony, my uncle found he had a PSA of 60 in 2019. He’s 89 next week and although his PSA is currently 1600, he has a 5 mile walk three times a week, is still working and has been through various protocols for treatment. Although there is some cancer in his bones and a sizable 15 cm tumour, he is asymptomatic, enjoying life and probably the most active member in his board meetings (how annoying!). I can’t believe how much energy he has. I understand most people die with prostate cancer, not of it. We shall see what happens in his case, but the good Lord seems to want to keep him around and we’re all happy with that! Hold faith, you are not doomed, and most likely very far from that!
Granolaloaf,
When I was dx'd about 3 years ago my PSA was 1400+ and I had absolutely no issues due to having cancer. Now 3 years later, on ADT and with a consistent PSA of .04, I have to say that I felt 100 times better before the supposed life-saving treatment of ADT. This raises the questions of the purported ADT life extension versus quality of life. This can be considered quite a conundrum, in my opinion.
Is it preferable to just live with the disease, and its possible problems, than to treat it and succumb to the treatments' known, and generally unavoidable, side effects? Choices, choices, choices.
Charlie
ADT side effects are not unavoidable.
Please elaborate if you will for me. Thank you
Sure. ADT accelerates aging in general, and exacerbates any existing co morbidities. Specifically it wastes muscles, which, without intervention, produces chronic fatigue in most men. It also slows metabolism, leading to fat gain, abdominal fat especially.
That tandem of muscle loss and fat gain is called sarcopenia, and you definitely don’t want it. It creates a hole that is very tough to climb out of later.
Exercise-weight training in particular- is known to reduce or eliminate the fatigue, and combined with caloric restriction keeps body weight and its composition healthy.
Exercise also helps protect the heart from the CVD issues ADT can induce, and prevents cognitive loss as well.
The suffering from flashes is considered to be random but I doubt it. I believe here too better circulation, less body fat, healthy mitochondria and greater lean mass tend to make hot flashes fewer and less severe. They did for me.
I have absolutely no data to back up the hot flashes part, it’s a supposition. The rest of it has been well researched.
The most common side effects of ADT are fatigue and hot flashes. I read a study recently the estradiol patch 0.05 mg lowers the intensity of hot flashes. 0.1 mg also lowers the frequency but you will have a higher chance of growing boobs with sore nipples.
As far as the fatigue, as another respondent suggested, exercise, specifically resistance exercise (weight lifting) has been beneficial according to others.
There is some discussion here on going the Estrogen ADT route as having fewer side effects. There was early results from an initial study. You might check this thread out:
healthunlocked.com/advanced...
But this is all probably irrelevant to the OP if he's castration resistant. So this is sort of a sub-discussion.
Maybe they are and maybe they are not. I am not aware of any clinical trials that indicate one way or the other. But from the flood of entries on this forum concerning side effects of these various drugs it would seem that most of us suffer from them, though maybe not all of them for each of us.
Please note that I am only expressing my thoughts about my own experiences in this journey. Maybe I am also the only one here that has them and thus my own unique questions and thoughts. Just maybe.
I am certainly not advocating that anyone else here should raise the same questions that come to my mind. I would never be so presumptuous.
May you all have peace of mind.
Charlie
The ‘flood of entries’ chronicling side effects are mainly from those who suffer from them. You don’t hear much from those who do not.
There are clinical trials re: exercise and ADT side effects, but they don’t provide accurate information. This because of too many studies rely on self reporting (men tend to lie about how much and what they do for exercise), and other factors such as using walking only as a sole metric. Walking is great, but on ADT it isn’t nearly enough. The fit also tend to have healthier lifestyles in general-diet etc. and can confound results..
I tell any man who suffers inordinately from ADT side effects and doubts what weight bearing exercise can do to alleviate them to start lifting weights. Or if they already do, to increase the frequency- or especially the intensity. Safely, preferably with a trainer. I 100% guarantee they will experience a notable difference in a short time.
They are avoidable if you switch to estradiol.
It's interesting you mentioned this as it's something I was recently pondering. There's not much data on what is the difference in the long run if you do minimal treatment or stop treatment earlier than the average patient to avoid side effects versus throwing the kitchen sink at the cancer as long as possible. Recent therapies I've seen clinical trials on for end-stage PCa patients showed a life extensions of 3 or 4 months usually in exchange for some nasty side effects.
I put the question to a couple AI bots just out of curiosity. I think I phrased the prompt about time to metastasis and one answered the average was additional 2 years for time to metastasis when ADT is used. My confidence in the answer is not high though as even with the latest AI Bots they frequently hallucinate if you ask them to give you links to the studies they based their answers on linking to the wrong study, or non-existent one. So you still have to double check the data yourself.
It's up to the patient to make the final decision in how they want to balance hit to Quality of Life from treatment side effects versus the potential benefits. It's a very personal choice but I think human psychology has a survival instinct that could potentially put people in situations where they may have forgotten the law of diminishing returns and let the treatment side effect/reward ratio go too low. It's only natural especially combined with the fact Doctors are primarily employed to keep you alive I'm sure not many have the courage to tell the patient they are better off foregoing treatment and enjoy the time they have left without drug side effects.
On the other hand medical technology is advancing fast enough that many (inlcuding myself) might think, an extra 4-6 months could make the difference between being around for a breakthrough or not or the ability to participate in a new trial.
Hurray!, uncle’s PSA has dropped 400 points from 1600 in the last 30 days after a switch from biculatimide (to which he’d become resistant) to dexamethasone as well as fembendazole (with the CBD and other absorbing help) and a 48 hour fast… hoping this will continue!!
can u get on lupron and Xtandi?
If the Dr Goodman you're being cared for by is the same O. Goodma I was with for several years, you're in good hands.
Have you tried taking Dutasteride (Avodart)? My PSA went from 10 down to 5.5 after about 1-2 months, and recently down to 3.3, while only taking Dutasteride..nothing else (I'm recently diagnosed with T3a PCA and ECE, but with a clean PSMA-PET scan).
It blocks the production of Dihydrotestosterone (DHT), which is the bad actor for PCa.
Bob
I have not heard of that. Thank you I will ask about it on my call today with Dr Goodman
Not sure but looking a that product is says it is for BPH. Is this called for when it is in your bones?
Dutasteride has been studied extensively for over 20 years to fight prostate cancer, not just BPH. Reducing the DHT level improves both BPH and it fights PCa.
If you send me your email in a private chat, I will email you 10 papers on Dutasteride and PCa. It's also FDA approved for treating hair loss in men and women.
My PSA recently dropped from 10.0 down to 3.3 after 3 months on Dutasteride. The likely explanation is that the tumor has stopped growing, or is shrinking. Plus, Dutasteride shrinks the prostate volume by 25-50%, which helps treat BPH.
Bob
There are SO many options... so much hope and help out there I can't even begin to list them all! My husband's PSA was 1,600 in 2018 and we're heading to Gainesville next week to watch the NHRA Gaternationals in person with a PSA of .9!
Janebob,
I seem to maybe remember that Dihydrotestosterone (DHT) is the real problem (food?) for PCa. Is this the case you are referring to?
Charlie
Yes. It is well-known that PCa cells only respond to DHT, not to regular testosterone. People refer to testosterone levels in their, but it is understood that they should be referring to DHT levels, which is the actual fuel that feeds PCa (as you said). That;s why Dutasteride is so effective at fighting PCa. My PSA has dropped from 10 (peak) down to 3.3 over a few months while only taking Dutasteride and no ADT or RT.
I don't think so, there are many treatment options; suggest you see a medical oncologist and a radiation oncologist asap (I doubt surgery is an option due to spread).
Spoke to Dr Goodman & asked my chances and he said without intervention "a year". with intervention, "years". I had cyberknife six months ago and PSA went down to to .1. It went up to .6 and then in the last 3 months to 8.5 The MRI showed seriously scary spread. Goodman says it has likely "mutated". PSMA scan set for Wend. he wants a genome test (my LDH went from 200 to 400) The ideas on the table are possibly Pluvicto but that is not the best when it is only in the bone due to red blood cell drop he said. Chemo (but not Docetaxel) Then possibly trials but he did not elaborate. I did Docetaxel three years ago and it is not much fun.
My PSA went from .6 to 8 in three months. A week later I had another blog test and it was 10. The PSMA scan revealed after languishing for three years in my L2 it has now spread to my upper back, my femurs my ribs and L1. The cancer made a move quickly and I am feeling rather despondent. So much for cyberknife on the L2 six months ago. Dr Goodman thinks Pluvicto is the best path for me since it is an aggressive treatment compared to Xfigo. As well with an "average" two year life expectancy chemo would take me down and out as chemo does. My grand daughter was just born three months ago. I am sad. I need hope. - Jim -