Reading the posts this morning I came across a reply that mentioned joint deterioration as a result of ADT. I just came off 24 mo of ADT. I've had some major inflammation in my knees the past two weeks. Could this be related to ADT - or perhaps an SE of RT to the lymph - or is it just old age? Just wondering if anyone else has experienced joint problems related to PCa treatment??
Getting older sucks!
OK Allen, got it! But how did I get here so soon? I added Turmeric to my supplements. It seems to be slowly improving. I know, I know, Turmeric can give a false psa reading. I'll stop two weeks prior to labs.
My goal is to become a cyborg - all parts replaced as they wear out. I already have new electricity and wires in my brain (called "deep brain stimulation"). My knee improved with physical therapy alone.
I thought you seemed to be part robot - connected to AI.
But it's better than NOT getting old!
I am betting it will, Smurtaw. Xtandi can be the cause of all that. You are only doing it for 3 weeks?
it takes more exercise the older we get just to feel ‘normal’. After that, if we’re lucky, we get old enough that we’re just trying to hold on to as much of what remains as we can.
ADT wastes muscles as I’m sure you know. Hopefully you have lifting weights throughout, especially in the lower half. If not it’s time to start.
Do you have known areas of osteoarthritis? Whether you do or not, practicing the Asian squat can really help the knees. You can work up to resting deep squats by starting with assist from a chair, doorway etc.
Many older people think they can’t squat anymore because their knees are ‘bad’. What’s bad is they probably stopped deep squatting when it started becoming uncomfortable from not doing it-usually as a child. Inflexible joints can be rehabilitated at any age.
I found this article on the internet about Asian squat:
saigoneer.com/saigon-cultur...
Great article thanks for the link, a nice introduction for those unfamiliar.
This line resonated with me:
“The ability to perform this squat is largely considered something passed down through genetics”
This is true of so many things. It’s often mistakenly assumed that natural gift or genetics is responsible for skills built through years of practice.
Some who argue otherwise don’t want to admit they were unwilling to put in the effort.
I've been on Lupron for about 3 years. I'm 68 years old and yes I feel a slow decaying. I have embarked this year hiking 7 miles each morning in the woods. Seems to help my energy level and well being.
Untill recently you said that Enzalutamide doesn't have noticable side effects. What actually changed?
I believe that you also said that Abiraterone plus Prednisone sucks.
What is the difference between the side effects of these drugs on you?
I didn't try any of them.
I wonder if tE2 gel would help since most forms of ADT eliminate estradiol which is necessary for bone health?
I agree, my MO wrote a prescription, now we are waiting for the insurance company to approve.
I follow your tE2 posts closely. Very interesting! I've just come off 24 mo adt. If I ever need to go back on, I want to make E2 a part of the protocol if I can find a doctor who will cooperate.
If you ever want to try tE2 gel, PM me.
I had my E2 tested on10/29. Results - Estradiol, Enhanced<15 pg/mL - T was 8 ng/dl.
They give a normal range of - 0 - 32 pg/mL for E2. It was not flagged as low. Is there more than one test for E2? At this point I am not looking to use E2 as adt. I am now off adt. PSA is <.1. I would just like to return to "normal" ASAP. Would tE2 accelerate the process or would it interfere with T recovery? Any thoughts?
I had Lupron for just over a year and developed pretty significant stiffness and pain in my hands, very arthritis-like. A couple of other members of this group said they had similar issues (even though this is not noted as a recognized SE of Lupron. After finishing my Lupron course, my hands got better pretty quickly and no issues since. It seems everyone reacts a bit differently to ADT. As others comment below, exercise and stretching may/should help. Good luck.
Thanks for the reply. Seems we were created to need T.
My husband gets pain in his hands sometimes. His back hurts now and so does his hip. We get scans soon. I am hoping its just joint pain.
Was on Lupron for 9 mos (three 3 month doses). Yes, to joint pain: knees, elbows and ring fingers (developed a "trigger" finger). All of these cleared after stopping ADT. And, yes, tumeric seemed to help. As did medical marijuana. And, yes, to all being made worse by aging.
EdinBaltimore
Interesting. I've been on Lupron 15 months - 1 more injection to go. I climb and developed trigger finger on each hand, which I credited to a hard session in the gym pulling over-hanging pockets. I never had this issue in 48 years of climbing. AND recently developed knee pain in one knee - MRI shows some cartilage deterioration (well I am 66).
Curious - when did your symptoms arise and how long after stopping ADT did they clear up? Thanks.
Apparently, I'm hypersensitive to low T. The joint pain did not occur until 2nd/3rd injection; fairly late in the course of treatment. I went to primary care doc who was ignorant about connection between ADT and joints. I self treated and probably did as well as could be hoped for. The joint pain lasted a couple of months but seemed to gradually clear once the Lupron shots were done. Another aspect of this was the impact of ADT upon muscle mass. I use to swim and had a nice bod as a result; a speedo into my mid 50s (!) Yeah, well...poof gone...and, of course, getting older plays a role as well.
Thanks. Can be hard to sort out since most of us on ADT are, well, OLD. And joint issues come with the territory. My trigger finger issue is definitely from a gym climbing session - overhanging wall, two-finger pocket holds. Just over did it. Maybe without Lupron I would not have been injured? Who knows. My knee thin is worn out cartilage on the medial side- had an MRI - pretty pitted-out. Not an ADT issue. Sigh - so likely a knew knee in the new year. I did talk to my oncologist about these and she said some folks do get a general achiness from Lupron - but it is highly variable among individuals.
Are you curable? How many mets did you have at the diagnosis?
What did the liquid biopsy say?
I am not an expert, but I remember asking my first oncologist about his view about circulating tumor cells, an article from Mayo clinic, and he just said rubbish.
We are talking about a professor of oncology. He had strong feeling about CTC s.
I believe somebody here said that his oncologist said that nobody died from micromets.
Do you have any understanding about CSC (cancer stem cells)?
What do you know about? Are they real?
I believe that the theory is that they don't divide (fast?) Therefore chemotherapy is not killing them.
And I believe that even radiation is not killing them.
Even a normal prostate cancer cells need 2 years to get killed by the radiation.
So how can we get rid of the prostate cancer stem cells?
I am happy that you have fun with your baby.
This is from Wikipedia about CSC:
en.wikipedia.org/wiki/Cance...
I believe that maybe we should focus more on killing the CSC (if they exist at all).
Nobody talks about them here on this forum. Everyone is talking about Lutetium treatment but not about cancer stem cells. I thought they may don't exist? What your MO thinks about them?
Even if you get rid of the prostate cancer with Olaparib and clean even your own genes in your own body the cancer reinvents itself and comes back.
Why is it that oligometastatic prostate cancer is considered curable and not yours? I am just trying to understand. What do you think about this?
All therapies fail.
I am talking about CSC (cancer stem cells) and not circulating cancer cells. Sorry if I confused you.
I also noticed a large increase in joint stiffness during ADT, which diminished once I got off ADT. I also developed trigger finger in my right little finger which I still have, so I don't know if ADT caused it or if it just was developing independent of ADT.
Did you develop diabetes?
Nope. My blood sugar is normal, though a little on the high end.
I also had some signs of trigger finger but I don't have it yet. I am really curious what causing the trigger finger but I believe it must be our lupron ADT therapy otherwise why would so many people have it?
Low testosterone can result in increased systematic inflammation, and trigger finger is caused by inflammation of the tendons in our fingers, so maybe this could be the reason we are seeing trigger finger cases during ADT. Just speculating.
My inflammation is very low. I am on Degarelix.
I had some problems with my middle finger ones or twice when I was showering and using the soap. It was a very strange feeling. Fortunately I don't have that problem now but after reading these comments I realized that it could be related to the trigger finger phenomenon. But I am not sure. We are all learning.
I believe you are right, trigger finger is caused by inflammation. Both of my thumbs were ready for surgery...it was so painful when they locked up, I would scream. I started to take a supplement called zyflamend 2 capsules every day and also Turmeric Forte from Medi Herb once a day. As my trigger thumbs started to get better, I started to reduce my gluten intake. Guess what....no more trigger thumbs and my marathon knees and back are no longer hurting.
my husband same and that was with 1/2 dose. Back pain, the works. He tried to go up from 1/2 dose but symptoms got worse.
Well after being into my ADT, I had pain in a lot of joints! All major joints on the left side of my body! Move from knee to ankle, to shoulder, to elbow and repeat! At the end of it, every major joint, again only on my left side was killing me.... at once! I handle pain very very well but this was depilating! Diagnosed by sawbones was Arthritis of course!!! Left over gout meds cleared it up but PcP would not refill for liver damage fears! Thus the return and Meloxican was all they offered which did nothing! As I came out of ADT getting that stuff out of my body, and regained my T.... the pains diminished to the point of being GONE! To much of a coincidence not to be related to either the drug or its treatment!
That's encouraging! How long did it take for your T to come back? At one month post adt my T is 8. Not much. Still castrate level.
took well over a year to break into the low normal range! I could see symptoms actually relieving to just plain going away with T @ 100.
I don't know how typical my situation is, but after 13 months of Eligard shots which kept my T below 10 my T bounced back to 570 three months after the shots wore off. It is now 780 an additional 6 months later. I still have several of the ADT side effects though, even though my strength and energy have largely returned.
It is well known that low testosterone increases pain sensitivity. They don't mention that in the list of AE's for ADT.
My arthritic back pain got worse during ADT and then subsided to its previous level within 6-8 months after treatment. My hands also swelled up and became riddled with painful trigger fingers. This, too, improved post-treatment though I still have a bit of it. I believe that ADT does cause joint pain, though I'm not sure "deterioration" is right.
I myself are thinking about some tests just to see if my deases is progressing or not.
This is only my idea.
I have to ask the value of these test and which one I need.
Ones you are none detectable on all of the scans then you need something more sensitive to watch for the progression of your deases.
How sensitive are these tests? Is it worth spending money on them?
After my SBRT of my prostate I would like to stay on Degarelix injections alone. Therefore I need some tests which will say to me when I should add something else before even the PSMA PET scan could detect it.
Alternatively I could start Abiraterone plus Prednisone now, but I would not fill comfortable with that as at the moment I don't have any mets visible on any scan.
If you could advise me I would like to know your thinking how to detect and monitor any early movement of the cancer.
I could start with Guardant 360 cdx like you now, but I am not sure if the money would be well spent untill some actionable mutations developed but this guardant 360 test has more value ones the PSA is above 5 or even better 10.
Thanks for your reply and looks we have the same "problem" undetectable on any scan.
I am finishing now the SBRT MRI Linac of my prostate as the cancer in my prostate is now CRPC. My PSA was 1.4 before starting irradiation 10 days ago.
The PSMA PET/CT did show cancer in my prostate with SUV max value of 14. Therefore we are irradiating my prostate to kill the cancer and prevent it to spread locally.
Have a great fun with your baby.
István
I’m two years now on Lupron/prednisone and my knees are falling apart! I’m going to physical therapy for my left knee and now I can feel the same issue coming up on the right knee… Pain on the backside inside my knee. I also have trigger finger on my right hand and issues with my left thumb. I would love for all this to get better, but my MO wants me to stay on the dual therapy as long as possible.
Have you considered a remedial therapy like Curcumin? ADT has a lot of undesirable SE. I have tried to counter some of them with supplementation. I found that ginseng really helped counter fatigue and it helped to keep the boys awake! I'm trying Curcumin for this inflammation issue. It seems to be helping.
Did you take creatine (creapure- patent protected)?
My PCP would not have a clue that my kidneys are close to failure. He would just ask: did you eat meat? If you eat lots of slow cooked meat than all the creatine convert to creatinine.
I dropped all my supplements.
Better if you spend money on better food. I am sometimes going to china town and buying fresh yellowfin tuna from Indonesians from West Borneo for only 20 A$ per kilogram and eat it row with Kikkoman soya sauce made in Japan and prepared Wasabi in tube made in Japan.
What was your glomerular filtration rate?
My GFR dropped ones under 60, maybe 55 because of the slow cooked lamb chops i was eating a day earlier. (Creatine from the meat convert to creatinine as a result of slow cooking 14 hours long.) But your kidneys are actually good just overwhelmed with the creatinine.
At which PSA your insurance kicks in?
I can also follow my PSA.
I just came back from the last (5th) SBRT radiation to my prostate with my local MRI Linac mashine.
I live 400m from my local General Hospital and Genesis Care operated Elekta Unity MR-Linac. Just across the street from the hospital.
We hope that I could continue with Firmagon injections alone as we killed the CRPC in my prostate and nothing else was visible on 68ga PSMA PET/CT scan and FDG PET scan and nuclear medicine bone scan.
My PSA was 1.5 then dropped to 1.4 after all that scans.
I just did the new PSA test today so I am curious what is the result of that test.
Can you have a consult with Dana Farber cancer institute and see what they think about you being curable or not.
You don't have to do it right now but your odds will get better every year.
Some scans and SBRT machines where not available 2.5 years ago for me, but because I was waiting with my radiation 4.5 years now I have better odds for success.
I am not pushing you, I would also wait, but still you should have a team working on your cure or at least thinking about it.
I know that you are J and you are going with straight line with your BAT, but you can still inform yourself about the possibility of the cure. You can consider it and wait until they say that you can now safely try to get cure.
My situation also changed from 4.5 years ago. Now was the best time to get rid of the (CRPC) prostate cancer with radiation. Things are changing for the better as the medical science is advancing. And Dana Farber is the first to offer new procedures. You have to just make sure that you want to be cured and that you are not in a hurry so they can offer you that as soon as technically possible.
I’m sure you realize that most of the men on this forum can’t do one ‘ass to the grass’ squat, let alone with 200 lbs or more.
On the one hand it’s admirable but in this context it also just sounds like bragging. Guys should be encouraged to start very easy and slow with something like this. They already feel emasculated by the consequences of age, treatment etc.
I do understand you are proud. I used to refer to the specifics of what I do too, but I try to refrain from it since truly realizing the abysmal physical state of so many older people in general, exacerbated severely by ADT in our subgroup. Please keep an open mind.
The opinion of a 9 year old boy goes down easy though; decrepitude is obviously incomprehensible at that age.
You post great stuff. Most of what old guys tell me is what they used to do. Better to savor present day exploits. The odd thing as I get older is I am able to maintain strength, flexibility and fitness in some areas much better than others, even with concentrated effort.
Some of these elite geezer athletes amaze me, but more so in their dietary habits than the exercise. I eat healthy, but in the quantities of a farm boy. For me to look cosmetically the way I'd like requires temperance I simply am not invested in! I come close, and at 66 that's enough.
My wife is similarly mystified. Kids and women have it good.
maybe someone with a bit more brain power than I can add to this but I recall a super duper anti biotic that I had to sign a release for prior to taking for my biopsy and gold seed planting! I’ve read articles (including here) that (as I recall) linked this drug to joint failure!
You are correct it could have some negative effects on your ligaments.
That was one of the reason when my doctor said that I can get Cipro or Flagyl i said i don't want Cipro.
Actually it was only a theoretical discussion about my options with antibiotics if my diverticulitis flares up.
The FDG PET scan found a diverticulitis but apparently that is almost normal when you are old. Just pray that it will not get infected, than you need the antibiotics.
That is what they made me to believe (doctors).
I will know it on Wednesday. (PSA test results)
My sister is a doctor but I don't believe her everything.
If you are a vegetarian hope you are managing well your vitamin B12 levels? Are you testing it?
How much © Creapure are you taking per day? I stopped taking creatine long time ago. I would take 2g per day to maximum 5g per day.
If I good understand your calculated GFR was always good.
I believe lot of supplements could be potentially dangerous as the quality of them is not regulated by the FDA therefore could widely vary and could even contain toxic ingredients. That is dangerous.
It was a good decision that you stopped with most of your supplements. You could even avoid interactions etc.
Did you investigate further the reason for kidney failure? What indicated kidney failure?
Take care.
Just don't rush, just study all your possibilities and move slowly.
I think it is a good tactics to stick what is now working for you. Your goal is really just to extend your life safely until the cure will be available.
I am not pushing you into anything drastic just to consult people who know more then us.
The reality is that lot of things already changed since we were diagnosed.
With the advancements in radiology and imaging I was able to hopefully get rid of my CRPC in my prostate and hopefully I am now again HSPC.
Don't rush, your goal is to extend your life until the cure will be available. Somebody said after 2035.
This stinks, Smarty.....I'm sorry! London is right it just wastes muscles, holding on is all we have, hang in there!
I understood Smurtaw what you meant. It takes hard dedicated work to be an athlete and why not talk about it....my husband was breaking records way into his seventies and I am so proud. he is still and will always be the strongest man in the world for me. Jim doesn't talk about it much any more, I understand that and will never forget his dedication to his sport. Smarty, when you were talking about squatting , that use to be my fave thing to do when I hit the gym in my young days. I could squat my body weight no prob, and remember it like yesterday. Its not bragging, just hard to let go of so many years of dedication and wish we were right there again. Oh my poor knees!
PSA is 1.2 after the 4 th fraction of SBRT. Therefore it dropped. by 0.2.
PSA down from 1.4 to 1.2
From the internet about liquid biopsy what you had in your MO office:
I don't really know. Our friend Spyder said that his RO will only test the PSA afte 3 months. It looks that the PSA could even go up first, but my dropped as you see.
I will test the PSA and I am not afraid if it goes up first.
I believe the cancer will die out fully in about 2 years, maybe in 2.5 years after SBRT of the prostate.
I believe that the radiation only prevents the cancer from multiplying. Therefore the fast multiplying (dividing) cancer will die sooner. But I don't really know. That is what I believe after reading the internet about radiation damage to the cancer after SBRT.
tango65 recommend Abiraterone plus Prednisone for 2 years after prostate radiation.
I will see how will it go.
My registra already wanted to prescribe my Enzalutamide but I would like to see what will happen in a first 3 months after radiation on Degarelix injections alone.
The MO and RO want me to stay on Degarelix injections alone so we can see what will happen.
I am just in case started 5 days after the 5th and last fraction of SBRT with 200mg doxycycline per day plus 500 mg of metformin in order to avoid bacterial resistance as a result of the antibiotic use.
I plan to reduce the dose from 200 mg per day in 2 weeks to 100 mg per day of doxycycline.
I plan to continue with the antibiotic up to the meeting with my RO in 3 months.
My urinary flow is weak and I really don't want infection which would maybe force me to use catheter.
If you had high blood pressure with AA it was because the absorbed dose was not matched with an appropriate dose of Prednisone.
Did you take Abiraterone on empty stomach? How much Abiraterone did you take? What was the dose of the matching Prednisone what you had with Abiraterone?
I just read it here on this site that 5mg of Prednisone is for a HSPC while 10mg Prednisone is for CRPC for 1000 mg of AA on the empty stomach.
It looks that if you have a blood pressure you should add a little bit more of Prednisone than what you are taking in order to match the absorbed dose of Abiraterone.
Interesting is (i didn't try Abiraterone yet) that my MO said that I will need 5mg of Prednisone with Abiraterone (i assume 1000mg what is a standard dose) on the empty stomach.
He probably knows (I hope so) that I am castrate resistant now? I am really confused.
You should take only 5mg Prednisone with 1000mg of Abiraterone on the empty stomach as I believe that you are still hormone sensitive?
Prednisone what you take with Abiraterone only should replace your own natural production lost as a result of Abiraterone use?
Therefore you used up to 4 times more Prednisone 20 my instead of 5 mg.
I also found on the internet that by using Prednisone alone you could breed out some nasty cancer.
That is why with my early Docetaxel chemotherapy didn't use Prednisone.
The Finish doctors also trying to stay away from the use of Prednisone.
With Abiraterone I would need to use a proper dose in order to avoid high blood pressure.
My blood pressure fluctuate even without Prednisone.
I am just disappointed that my MO said that I will need only 5mg of Prednisone and with CRPC you need to take 10mg if the information from this site is correct.
I really don't understand why he is trying to convince me to use Abiraterone?
Honestly I will try to stay on Degarelix injections only if I can.
That is why I radiated my prostate instead of just simply taking Abiraterone or Enzalutamide.
I live in Australia and here I can get enzalutamide on PBS for free until it works or fails.
After that i could have a chemotherapy and there is a possibility that maybe Abiraterone plus Prednisone would work again. Unfortunately i could not get the Abiraterone prescribed on PBS again according to the PBS rules. Only ones in my lifetime.
The only solution would be then to move to another country.
Change the court.
I could get Abiraterone plus Prednisone if I pay from my own pocket. Therefore I have to start with Enzalutamide and after failure of Enzalutamide i could do Jevtana and after Jevtana pay from my own pocket for generic Abiraterone. Maybe I could then experiment with taking only 500 mg of AA with fatty food in order to save some money.
I don't like that possibility as the absorption would be very variable therefore the resulting apsorbed dose would be different after each meal and I would not know the proper matching dose of Prednisone.
Hopefully you see my problem.
Plus my MO thinks that ones Abi or Enzalutamide fails it is not possible to use it again even after chemotherapy.
That is totally different than what I believe after reading this site information.
Obviously the people who wrote the PBS do not believe that Abi could be useful again after failure even after chemotherapy.
It would mean for me clinical trials.
And not only for me. For lots of other people also.
I don't want to change until my mets don't start to grow.
15% of people on Enzalutamide develop neuroendocrine version of the prostate cancer.
Thanks
Maybe, but I don't have money to start Abiraterone plus Prednisone or Enzalutamide before my Degarelix injections fail.
So at the moment is not a high priority for me.
I am avoiding any costly, toxic and unproductive add on therapies.
That is me.
I would not add Prednisone or even DHT inhibitors or bicalutamide, Abiraterone, Enzalutamide etc until Degarelix injections alone work for me and keeps my prostate cancer on the 68Ga PSMA PET/investigative CT, nuclear medicine bone scan and FDG PET scan undetectable.
After Degarelix injections fail I will most probably switch to chemotherapy depending on further investigation.
Oh well, the cancer is like me, if you push it hard it will reinvent itself.
It is really not in my interest to breed out some hard to detect and hard to treat cancer until Degarelix injections plus SBRT with MRI Linac can make my cancer invisible on any scan.
I am just using high level thinking.
As you said we are at this moment probably not curable but if we hang around for some time living in peace with our sleeping cancer we may live long enough until the cure will be available.
My first MO wanted me to do an intermittent ADT but I refused it because I was diagnosed with 15 mets in my spine. Even in my neck just under my skull.
With such a diagnosis I can't afford to experiment on myself. Sorry
The medical advice what I received was that some people live long on ADT alone and at the moment it is true for me. Ok, i had an early docytaxel chemotherapy treatment 6 cycles and I am very happy for that.
The reality is that I don't have any visible mets on 68Ga PSMA PET/investigative CT with contrast, FDG PET scan and nuclear medicine bone scan and I am only on Degarelix injections.
My last PSA was 1.2 and I am not going to upgrade my therapy in order to see how the SBRT of my prostate is working.
I will probably wait until my PSA goes up to 5 and than get a Guardant 360cdx liquid biopsy and i will start Chemotherapy.
You can read my problem with resensitizing Xtandi:
PBS rules for Xtandi in Australia:
10174L - ENZALUTAMIDE
Prescriber Code: MP
Item Code: 10174L
Drug Name: ENZALUTAMIDE
Manner of Administration: Oral
Max quantity packs: 1
Max quantity units: 112
No. of repeats: 2
Note
Note
No increase in the maximum quantity or number of units may be authorised.
Note
No increase in the maximum number of repeats may be authorised.
Note
Special Pricing Arrangements apply.
Note
Applications for authorisation under this restriction may be made in real time using the Online PBS Authorities system (see servicesaustralia.gov.au/HPOS) or by telephone by contacting Services Australia on 1800 888 333.
Note
Where the term 'novel hormonal drug' appears in this restriction, it refers to: (i) abiraterone, (ii) apalutamide, (iii) darolutamide, (iv) enzalutamide.
Restriction
Authority Required
Castration resistant metastatic carcinoma of the prostate
Clinical criteria:
The treatment must not be used in combination with chemotherapy,
AND
Patient must have a WHO performance status of 2 or less,
AND
Patient must not receive PBS-subsidised treatment with this drug if progressive disease develops while on this drug,
AND
Patient must only receive subsidy for one novel hormonal drug per lifetime for prostate cancer (regardless of whether a drug was subsidised under a metastatic/non-metastatic indication); OR
Patient must only receive subsidy for a subsequent novel hormonal drug where there has been a severe intolerance to another novel hormonal drug leading to permanent treatment cessation.
Xtandi
Brand name: Xtandi
Form & strength: enzalutamide 40 mg capsule, 112
Manufacturer: Astellas Pharma Australia Pty Ltd
Dispensed price for max qty: $3536.92
Max recordable value for PBS Safety Net: $42.50
General Patient Charge: $42.50
Testosterone after ADT?
Long-Term ADT With Radiation
Intermittent ADT
Reason for ADT
