Treating Side Effects of Hormone Therapy |
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- Опубліковано 22 чер 2023
- Mark Scholz, MD is a medical oncologist who specializes exclusively in the management and treatment of prostate cancer patients. Here, he and PCRI's Alex give a survey of everything a prostate cancer patient should know before starting hormone therapy for prostate cancer. The side effects of hormone therapy and the intensity of those side effects vary from person to person; however, there are established strategies to prevent and mitigate them to the greatest extent possible.
0:06 "Hormone Therapy and its side effects"
0:46 What is the difference between first- and second-hormone therapies and do they have different side effects?
3:50 Does hormone therapy cause memory loss?
5:34 How often should someone do resistance training to prevent muscle loss and fatigue during hormone therapy?
6:08 What can a patient do about bone loss from hormone therapy?
6:45 What is a good diet for someone on hormone therapy?
7:40 How many calories per day should someone on hormone therapy be eating?
8:18 What are the benefits of a personal trainer for someone on hormone therapy?
9:38 What percent of men experience hot flashes while on hormone therapy?
11:05 How are estrogen and progesterone administered?
11:31 Which type of physician is best for discussing hormone therapy-related side effects?
12:06 Should people on progesterone be monitoring their testosterone levels?
12:42 How common is breast enlargement on hormone therapy and what can patients do to prevent it?
14:38 Which type of physician should a patient consult if they were interested in prophylactic radiation to the nipples to prevent potential breast enlargement from hormone therapy?
15:05 Is prophylactic radiation typically covered by insurance?
15:11 Are there any medications that are effective for the emotional intensity often associated with hormone therapy?
16:50 How does a man's sexual function recover after hormone therapy? Is there anything he can do to improve or hasten his recovery?
18:45 Is there anything a man can do to prevent penile atrophy (shrinkage) from hormone therapy?
19:26 Can penile atrophy be reversed?
20:08 Are there any urinary side effects of hormone therapy?
20:33 What are the benefits of hormone therapy?
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I have been on ADT for about 7 months, using Eligard and bicalutamide. It has been highly effective, and so far, I have not experienced any side effects. Previous videos impressed on me the importance of exercise. I am walking 3 1/2 miles every day, and working out with resistance bands three times a week. I personally recommend resistance bands rather than weights for the elderly (I am 80). Speaking of age, I would love to see Dr. Scholz do a video on prostate cancer treatment for men in their 80's, where life expectancy is limited, and comorbidities need to be considered. Keep up the good work ! I learn much more from PCRI than from my urologist.
I speculate that you have no sex life.
At 76, Eligard destroyed my sexual function, caused severe mood swings, brain fog, severe fatigue, and vision problems, muscle atrophy,
memory loss, etc., And chemical castration for Months and possibly permanent low testosterone even.6 months after Eligard expired.
This toxic medications side effects were INSUFFERABLE.
Im happy that you avoided any side effects of ADT
I have been on HDT for 7 months and it hasn't been pleasant. Hot flashes, mood swings, different levels of depression, muscle pain, joint pain, erectile disfunction and frequent urination, particularly at night. Thank you so much for the information in this video as despite all the research I have done I feel like this was a light bulb moment for me. I have 11 more months to go and I hope with this information I can rough it through. The therapy has been effective my PSA is down to .04 and I feel the cancer is gone. But I had been repeatedly asking myself at what cost. I also had high dose Bracky radiation and external beam radiation for 23 days. Thank you. I have subscribed to you channel and will continue to watch.
How are you doing now? I about to start ADT for recurrent PCa.
Another plethora of invaluable knowledge from you guys. I love the both of you. I’m about a year and a half into this fight. You all have given me so much wise counseling, and influence my decision making. And thanks a million for that. I started off with a PSA of 46 March 2023. Now after external beam, radiation, and Lupron shots about 16 months later my PSA is 0.688 and still slowly falling. But, I am looking forward to my 18 months of Lupron, so I can have a holiday or stop it completely. However, I will always Monitor my PSA and testosterone level every six months! Thanks so much again!
Keep up the fight buddy...I am same as you - we can do it! Best regards from Australia.
Thanks for sharing, very helpful; what’s your testosterone level?
@@cathum my testosterone, is less than 50 (ng/dL) now; but, I am still on Lupron shots for now!
Been in support group for over four and a half years. Highly recommended getting into a support group.. need more videos on reoccurrence prostate cancer
I'm still in shock for the number of men who chose the prostatectomy, and didn't know it could reoccur at almost the same rate as any treatment option there logic was falls in that it seems if you remove the Oregon that contains the cancer can't come back, but the microscopic cells are in your system potentially. I think this is another reason he doesn't recommend surgery with the high morbidities. I think more people would choose surgery although many mini still do if they guaranteed a didn't come back, but it still does.
Thank you so much!
Great information. Thanks.
I am a 67 year old male and I was diagnosed in March of 2022 with a MRI and biopsy that resulted in 11 of 12 cores positive mostly Gleason 6 and 7 but one Gleason 8 (4+4) and one Gleason 9 (4+5) both high percentage of core 80 percent. Had the whole body bone and pelvis scan which showed no metastasis, but I kept pressing for a PSMA Pet Scan which one year ago wasn’t easy to get but my urologist thankfully agreed to ask Medicare and it was approved. The PSMA came back negative so no signs of spread on PSMA Pet Scan. My PSA never went above 10, I believe 9.5 was the highest it ever got so a slight positive I would think, but I do have high Gleason score disease. June 1st of 2022 I started Orgorvyx and had definitive Proton therapy for nine weeks (including the Seminal Vesicle and lymph nodes) then started Abiraterone mid September 2022. So I think I am one of the earliest patients to get a PSMA Pet Scan and I am now one year of ADT with Orgorvyx in June and September will be one year Abiraterone. I know the protocols have not been worked out yet for people with High Risk Disease and a clear PSMA Pet Scan.
My thoughts are that I would like to discuss the possibility of stopping the ADT early. My Radiologist has said 1 to 2 years of ADT is sufficient, my oncologist has said 2 years. I consider myself lucky to be getting good care and some of the latest treatments available. I promised myself I would give everything I got to cure the cancer but would not risk ruining my health with the ADT treatments as quality of life is very important to me. I am definitely following the advise about exercise, exercise, exercise and don’t want to do long lasting damage my body for a cure. I now have low grade anemia and osteopenia from the treatment. So my PSA has been undetectable and I also have Natera ( Signatera) Genetic Residual disease testing done every 3 months which also comes back negative for any signs of disease. I feel that I am reaching the point where the cumulative effects of the ADT are becoming a big risk to my long term health and I am considering stopping the ADT at the end of August which will give me 15 months on Orgorvyx and 12 months on Abiraterone. I am presenting my case for a review and to open a discussion on shared decision making as I am struggling with my choices on whether to stop the ADT and need all the information I can get to make my decision. Thank you so much for your consideration.
I would like to have my situation presented as a question in a future video if possible.
Thanks for sharing.
I was coerced into one six month shot of Eligard and was ordered to be on ADT CASTRATION for two years after getting 25 fractions of 68 Grey IMRT for locally advanced Gleason 3 plus 4.
The radiation therapy was easy with no lingering effects, but the ELIGARD effects were so INSUFFERABLE that I refused further ADT.
Nine months after the first shot was supposed to expire, my T remains well below castrate level with little hope of ever recovering.
I was never informed about the horrific side effects or that ADT CASTRATION could well be permanent.
There was never FREE AND FULLY INFORMED CONSENT and the coerced administration of this toxin was criminal assault causing greivois bodily harm.
The Alberta CROSS CANCER INSTITUTE treats patients more like concentration camp inmates than humans.
The addition of ADT only helps 10% of patients, so 90% suffer this cruel and barbaric treatment unnecessarily.
I decided that my quality of life was worth far more than any imaginary or hoped for benefit to overall survival, so I rolled the dice and am taking my chances.
PSA dropped from 42 to 0.006
and if my T doesn't recover, after another year, I intend to self medicate with twice weekly injections of testosterone cypionate to try to get a life back
I have lost all trust in my doctor and the CROSS CASTRATION CAMP.
Completely wrong!!!
Search Dr Abraham Morgantalar !! (Harvard trained world expert on testosterone and prostate cancer)
Look up Hopkins Bi polar androgen therapy!! Very high, nice doses of testosterone, and then for Pharma to make $$$“Median annual out-of-pocket costs were $11,626 for enzalutamide and $9,275 for abiraterone.” they use that as the bipolar (to fund the study showing the power and benefits of high dose testosterone’s effect on prostate cancer!)
(Not to mention, the failure of your primary Dr to replace your naturally declining testosterone to keep the prostate from Desiccating “drying out” and allowing the prostate cell mitochondria to replicate a mutation, resulting in an un-differentiating prostate cell to develop (Gleason scoring))
For 22 years, high dose Bioidentical 17b estradiol daily to suppress any prostate cancer cell growth (androgen deprivation therapy) and then “high dose” testosterone to get your “Free” testosterone (your Dr probably doesn’t even measure) within the range of 350-400!
Your quality of life will dramatically improve, strength, stamina, vitality and if you are advanced in your cancer, it will slow down the unfortunate progression, but the quality of the rest of your life will be amazing!!
We have been doing this for 22 years with outstanding success!!
This goes WAY against the current “standard of care” but as you will see below, FINALLY Hopkins, Stanford and U Penn are moving into the space with “bipolar androgen therapy!” YES!! Progress!
pubmed.ncbi.nlm.nih.gov/29248236/
STOP ADT. IT IS BARBARIC AT YOUR AGE
I REFUSED ADT AFTER THE FIRST NEEDLE
So good!!
Great Video Thank You so Much!!!!!
Thank you folks! You are appreciated
Superb video. I would advise any man who is about to or is already undergoing hormone therapy for prostate cancer that they take every last word of this video very seriously. I am 8 months into 24 months of this therapy (Trelstar) and have experienced every one of these side effects with, so far, the exception of breast enlargement. Constant hot flashes and severe fatigue are the biggest challenges. I can already see the belly fat and crepe skin from loss of muscle mass. Not fun but better than the increased risk of no treatment. Thanks again for this well presented information. This has motivated me to get far more serious about weights and other exercises, if nothing else.
Great information
Much ❤️
Educational. Thank you.
Thank you for the very best information and real world guidance.
What a great series .....thanks to all
Always great information! Thanks for all you do!
Excellent and very well delivered with empathry. Thank you
Good job by all who put this together
Thank you for your videos- they are the best i've found on YT as far as clear, understandable information,
My path to hell....
So a 76 year old pensioner goes to the local health centre and meets a doctor and tells him that he is gets up and goes for a pee three or four times every night.
The doctor then examines his prostate and takes a blood sample, saying that the prostate feels smooth.
A week or so later the pensioner gets a phone call from his doctor telling him that his PSA is 11 and he has to get an MRI to check out his prostate further.
He goes and gets his MRI check and a few weeks later is asked to go to the Hospital for a biospy. (Apparently the MRI revealed something).
He gets his biopsy which is quite a strange experience and which is followed by blood in the urine and strange coloured semen for a few weeks afterwards.
A few weeks later the 76 year old pensioner gets a phone call from the hospital to go and meet with a consultant who gives him the bad news.......Cancer Gleeson 4/3 localised in his prostate and tells him that he will need a bone scan followed by radio therapy and hormone therapy over several weeks and months...maybe forever....
So far the intrusion into his prostate is a biopsy which has changed his semon from a milky colour to a clear colour and he leaks as well.
Still the unfortunate pensioner still has Radio Therapy and Hormone Therapy to come yet, as well as the results of a bone scan.....
The pensioner thinks......Why the hell did I go and see the doctor in the first place.?
Hi, whats the alternative though.
My gleason was 4/5 with a T stage 4 as the cancer is aggressive metastatic into my pubic and hip bones.
I've had the Decapeptyl injection with the Bicalutamide blockers, I've now on a life long course of second generation Erleada hormone therapy and suffer all your symptoms too.
But where would we be with the medication 💊 .
I feel the worst dide effects are the hot flushes massive headaches weight gaining medical castration, and more but I'm still here.
I feel your pain and hear your scepticism but what's the alternative, please stay strong. 👍
@@kenpie474
I agree...Better alive than dead.
Our NHS is wonderful and I cannot fault it nor my diagnosis and the future treatment to come.
It is almost certain that had I not gone to the doctor in the first place.....you know the rest.
I'm now going to the gym to try and strengthen bones and muscles.
I faced the same dilemma.
75, in good health, locally advanced Gleason 3 plus 4 PSA 42.
I was coerced and deceived into ADT CASTRATION and the effects became insufferable after 4
months so I refused any further ADT shots of Eligard.
My experience with IMRT 25 fractions of 68 Grey radiation was super easy with no significant side effects.
I did refuse to be tattooed which resulted in a pissing match with my doctor, but really was no problem at all as they just put four sharpy marks instead.
I refused to be treated like a concentration camp inmate.
My advice....
Don't believe the bullshit that ADT is generally well tolerated. It is cruel and barbaric treatment with horrific quality of life destroying side effects effects and life threatening effects plus a twenty percent chance that older men will NEVER RECOVER their testosterone levels.
Doctors only parrot the BIG PHARMA SALES PROPAGANDA.
Once you research ALL THE FACTS including benefits to overall survival, only then can you make YOUR DECISION and give FREE AND FULLY INFORMED CONSENT.
Ask your doctor for shorter term injections is you can back out if your side effects become INSUFFERABLE,
...ask about alternative medicine like Bicaludamide monotherapy which has fewer adverse effects but perhaps not quite as effective
....ask about Orgovyx daily pills instead of the injections of Leuoprolide, because the pills are more effective and have more predictable recovery.
Only you can decide what is the best course of treatment that takes into account your values.
Then, it will be easier to ride out the rough journey when you take ownership of the decisions, and not have treatment regret and rage for being coerced.
Best wishes for a complete cure
And we all would appreciate updates on this Jericho road we all are on
@@robwells230 Thank u so much for your honest feedback. I feel we are just doomed with hormone therapy or surgery. I feel we’re like Guinea pigs with these treatments. I was recently diagnosed with PC and in a couple of days will do the PSMA PET SCAN and praying this cancer didn’t spread. Next meeting with a Radiologist and will have my questions ready. Deciding on which one will be best for me. I hate cancer came into my life as I just turned 68. Now I am dealing mentally how to accept my life will not be the same anymore but aiming to not give up living.
@@robwells230ADT IS BARBARIC. REFUSE IT LIKE ME. ONLY HORMONE THERAPY. NO SIDE EFFECTS SO FAR
Very useful and helpful indeed. Thanks for the support and care you demonstrate. Getting ready for slavage RT and ADT soon, this video, as well aa others on your chanel, is a great relief. Big thanks, much love.
I watch every single video from this site that I can find as I begin to educate myself. Thank you for this great service.
My doctors should be required to watch this video. I could go on a rant about how little of this has been communicated to me. If it wasn't for PCRI, I'd be totally in the dark, and I'd soon be walking around with enlarged breasts, weak, fat, and depressed, with fragile bones topped off by total memory loss.
I started Lupron 2 weeks ago (102 weeks to go). I will start Zytiga in 2 weeks.
Below is verbatim the only information I was given about side effects of Lupron
- headache
- feeling dizzy, tired, or weak
- decreased appetite
- constipation
- upset stomach
- trouble sleeping
- irritation where the shot is given
- back, muscle, or joint pain
- flu-like symptoms
- sings of the common cold.
I have a hard time finding anything that sounds like the items discussed in the above video. The lack of information provided to me by my treatment team about any of the rather serious challenges patients on hormone therapy will face is just mind boggling.
Bet no one ever told you that there's a 20% chance that you will never recover above castrate level after ADT.
Administration of these toxic substances without your free and fully informed consent is criminal assault causing bodily harm.
Agreed. My doctor told me she is"not concerned" when my PSA results came back over 12. Ive had to do all the research myself regarding mpMRi,biopsy and possible treatments. Here in Canada, the health care system is extremely slow and it's difficult to get appointments for a PSMA PET scan or even talk to a doctor.
Yep! Nobody cares about you like you do. How are you doing now?
ADT IS BARBARIC. TRY HORMONE THERAPY
@@michaellow7369CANADIAN HEALTHCARE IS DEATH BY WAITING
Breast enlargement was not even mentioned to me and now it is too late to prevent or correct.
"hot flashes" turned out to be day long and need for a towel around my neck to catch the flood of sweat.
If I was told the truth I would have never had hormone therapy since they cannot say it extends your life a day longer.
We all are being deceived by the doctors and Big Pharma sales propaganda that ADT CASTRATION effects are generally well tolerated.
They are horrific and insufferable for many.
I refused further ELIGARD after the first six month shot expired, yet nine months after that shot expired, my testosterone remains well below castrate level.
We need voices like your to counter the unethical bullshit that's being spread to promote the sale of these extremely expensive and TOXIC drugs
ADT IS BARBARIC. I REFUSED IT. STARTED ON HORMONE
I will be talking with my oncologist about taking a break from the hormone treatment after the next dose. Thank you for that information!
Your videos are so helpful to people like myself that want to learn as much as possible about what we're dealing with so we can take as much responsibility for our health as possible. Bless you! I support your efforts and will donate to the cause.
If you want to learn more about the effects of ADT CASTRATION, don't talk to your doctor. He only knows the sales propaganda that big pharma spews.
....Talk to men who have been injected with these toxic ADT CASTRATION drugs to get the true facts
Thanks so much from Australia...I just had my injection yesterday - wow...can't believe I am seeing this in a random search. much respect for your video's and help..very best regards from down under.
Agree. As a fellow Aussie I feel sooo lucky in discovering this awesome site. I've recommended it to 3 mates I met during our radiation/hormone treatment.
@@renardargent6487 Hope U R doing ok, best regards.
Well. 2 weeks ago I decided on prostatectomy b’cus of these issues.
Being a 67yo RN with localized, 3 lesions, 3+3, 3+4 (10%), 3+4 (35%), PSA 5.7 , no other medical issues.
I knew I had Pca for 4yrs, went to MD Anderson cancer center, talked to both drs. they agreed with my decision.
Radiologist said your lesions and prostate is small agreed with decision .
Took me 12 months to go from PSA 4 TO PSA 10 STAGE 4 Prostrate Cancer. Was 70.
You are empowering!
Thank you!
I have been on ELIGARD and xtandi since 2018. My PSA is still ND🙏🧡. I am doing well except my body seems to get stiff and movement is limited.
This is corrected by exercise and eating good stuff. My red blood cells are a little low but other than that I am blessed
I have no experience with long-term hormone therapy, but I had 4 monthly injections of leuprolide prior to EBRT. My own experience was that it was very well tolerated with only slight fatigue and a single mild hot flash. Reduced libido was my most noticed side effect. All side effects ended after conclusion of treatment. I mention this so other men will not be too concerned about short-term hormone therapy if it is recommended as adjuvant treatment.
How quickly did your Testosterone level recover back to your baseline level???
one in five older men will NEVER RECOVER ABOVE CASTRATE LEVEL after a longer session on ADT.
My side effects on a six month shot were so bad that I refused further ELIGARD.
....I was never informed about the actual overall survival benefit of ADT, not the horrific side effects, long lasting testosterone suppression, not the real possibility of permanent CASTRATION.
....Not was I ever given any options such as Bicaludamide instead of Eligard.
....I would rather live happy, free of these side effects for a few months less, than suffer my last 10 or 15 years existing as a half dead ZOMBIE EUNUCH CREATED BY THE NARCO MEDICO CARTEL
Great
I quit ADT after 8 months in conjunction with radiation therapy. I’m only 55, single, and a PSMA scan showed no spread. I may need to go back on it or I may have dodged a bullet. The recovery to normal levels of testosterone may take months. The total loss of libido was the biggest shock.
Thanks for helping the PC community, very much appreciated; no mention of the Zoladex; does it fall under ADT?
Yes zoladex is a second gen agonist in terms.of its action as androgen deprivation therapy. It stops prod of LH hormone, whoch in turn acts on the testes and they will not produce testosterone
This is great information. In my case, I have experienced and increase in blood triglycerides while on ADT (Lupron and Zytiga/prednisone). Is an increase in triglycerides a side effect and if yes, will it reverse once off ADT? Just a thought for your side effects 2 video!! 😉
Orgovyx(researched this vs Firmagon) I requested from my Doc dropped my PSA from 25 to 5 in one month. One more more on the meds til radiation. Some side-effects ED, hot flashes, neck sweats, fatigue, etc.
I'm 75 years old and my last PSA was 17 before always 4.5 soon will have an MRI, Tub-p and a Biopsy test. Whatever will be the result will avoid chemical treatment. I've been on a keto diet for 8 months lost 12 kg weight have no more inflammation of any kind and my skin health is much better. I rather have 5 years more without side effects and a pleasant lifestyle than 10 years with side effects.
Stay strong brother !! I was 17 at first, then 4.0, then 0.08 and after one year 0.04, the chemo side effects were not so bad, feet got 5% more numb, hair loss(its growing back now!) and very dry skin. Walking and not too heavy weight training helps too, God Bless.
I start mine tomorrow for a 24 month program and I’m not looking forward to it at all. I need to provide my my wife with care giver for a few months along with doing everything that she contributes household. Also all my chores and taking care of the house, dogs, cooking, cleaning and the normal things of daily activities. It will be a very long 2 years for me.
Your chance of normal testosterone recovery after that long is very slim . You may well end up CASTRATED for life.
Your doctor will generally say you can NEVER get testosterone replacement therapy, BUT keep pushing for it if your T remains low after treatment ends.
Good luck
@@robwells230 Thanks for your reply. At 73 I can’t really expect too much at this stage of life now. All done with radiation and I just want to gain back normal energy levels. That’s is my next goal.
Started Lupron and Casodex on 1/15/2024. 2 weeks in the adverse effects kicked in and I was sweating for 3 days. I had to get Megestrol to stop it. It has subsided the hot flashes in 2 days.
Does body weight excercises such as pull ups, push ups, etc. count as resistive training like weight lifting?
Could you please cover Rechallenge docetaxel therapy after relapse of ca prostate
The exercise is almost impossible. No, it is impossible. I was able to keep in shape for months, then the radiation effects kicked in and I literally passed out at the gym. I kept trying, but had to face it. All my triumphs from the past meant nothing without testosterone.
I have two months of HDT left.
Can you talk about prednisone use with chemotherapy
When taking Lupron you will be so tired that you will not have the energy to work out for "an hour in the gym." You will have weight gain, your muscles will turn into fat, you will have bone mass issues, cardiovascular issues, and memory issues. I have taken Lupron and suggest that one not take it for more than six months, if at all. And, I know some men will disagree with me, and good for them, but most men will suffer terribly from this drug.
I totally agree, unless there is a dire need for it to treat metastasis and pain.
....I was coerced into getting one shot of Eligard ADT that was supposed to be for six months, but the effects last much longer and may well result in permanent CASTRATION.
My Testosterone level remains well below castrate 11 months after the Eligard was supposed to expire.
My side effects from this toxic medication were so totally unacceptable that I refused any further ADT.
Men must DEMAND all the information about ADT, both the real benefit in overall survival, and all the real quality of life destroying side effects and life threatening effects AND MAKE THEIR FREE AND FULLY INFORMED DECISIONS before taking ADT.
The administration of toxic ADT without free and fully informed consent is criminal assault causing bodily harm.
.....Doctors seem to be pawns of BIG PHARMA when they just spout their misleading and fraudulent sales propaganda.
I’ve been on it for 3 years and it’s horrible
I've been on it haven't had any symptoms at all everybody's different
The first topic always talked about is exercise and not sure how you can do that when you are so weak you cannot lift your arms and your leg hardly let you stand. I was way stronger before they started treating me. Destroyed my life saying it would make me live longer.
Well this was my situation. I was not told just how much I would be affected by radiation and hormone therapy. It was only when I realized just how far I had fallen that I became aware that I needed to do something. I started walking and doing resistance training. ie: free weights and core exercises. When I started weights I was only able to use 2 1/2 lb. and 5 lb. dumbbells. 1 1/2 years later I’m doing 10’s and 15’s ready to increase to 15’s and 20’s. I’m 70 and would say that it’s a marathon not a sprint. However if you start light and stay with it the results will follow. It’s your choice but if you persevere the results will follow.
@@lsones7588 I am 75 and my cancer is too far advanced to do much of anything. Palliative nurse today says I need a nurse full time to come in and check on me. Live alone and guess she does not want me to lay died for days.
Love your post Tx
Hi ! I am a 64 year old. Diagnosed with PC in june’22. Have undergone IMPBT( proton beam) in aug/ sept. Have been on ADT with q’ly lupron injection , expected to complete 2 yrs of ADT by Apr24. PLUS CALCIUM SUPPLEMENTS 1000mg/day, D3 etc.
I do weight training with KB’s 3 times a week, weights ranging from 14 to 20 kg, plus pull ups push ups etc.
I also walk 14,000 steps twice a week & cycle 30 kms once a week. This helped me manage my weight a lot better.
Loss of strength & muscle loss- yes, it is significant, but I keep at it and wait to regain same after the end of 2 yrs of ADT.
Hope for better days after ADT is what keeps me going.
My view is - Mind is a powerful tool to combat many side effects.
Dr Scholz, does the use of Lupron cause joint inflammation? And does that result in elevation in CA19-9? Thanks
wish I had seen this before being panicked into starting ADT and RT. The Eligard is killing me - id just got my life back after 3 years of knee and hip issues and now im so miserable losing my libido- its devastating to me (Im 61) . Cialis seems to do nothing as I have no libido .No way I'll stick to 2 years of this - my PSA has already fallen to 0.2 from 17. Be talking to the urologist about options in Jan and getting a 2nd opinion in the UK in Feb . My next shot isn't due until May (6 monthly) and interested I some of the options of using Estrogen patches to get some life back - drinking soy milk to see if that helps at all -even as a placebo .
i was on this therapy and my doctor never talked to me about these side effects other than weight gain.
Your video is very helpful.I would like to have them answer the question.Why after radiation?Does hormone therapy need to go on for the remainder of eighteen months to get maximum if efficacy.
Thank you! We will add this to our list.
It seems to me that hormone therapy attacks you at your weakest point. If you have trouble keeping off weight it’ll get you there. If you already have anxiety problems it will magnify them. The lack of knowledge that doctors prescribing them have is astounding - especially Urologists.
You promote weigh training so much, have you ever considered posting or linking an instructional video for this ???
....Not all men have the resources or access to a personal trainer, and live alone or in isolated placed..
THIS WOULD GIVE PCRI
A LOT OF CREDIBILITY
I will be undergoing radiation and hormone therapy having just been diagnosed with Gleason 8. PSA is 7.2 and both sides of prostate involved but looks like no spread. The recommendation for weight lifting is good, however I have kind of a catch 22. I also have an aneurysm of the ascending aorta which may require open heart surgery in 3 years or so based on current growth rate. My heart surgeon advises minimum weight lifting because of stress on the heart, increased heart rate, blood pressure (which I am on medication for). etc. Who do I look to for advice regarding a balanced approach to weight lifting to counteract muscle loss from hormone therapy and not lifting too much because of my heart condition? I also have chronic tennis elbow which limits some of any weight lifting for my arms. I feel as though I don't have a medical team, yet rather I have several specialists who are working on one thing with me and there is no coordination happening. Thanks in advance. I really enjoy watching the videos of you and Alex.
Great, comprehensive answers to questions that I would HATE to be dealing with...if trying to cure cancer would result in this range of TERRIBLE side effects, and trying to stay alive in the quite possibly forlorn hope of returning to 'normal' after this therapy, I would seriously consider GIVING UP. You can't tell me that taking all these extra meds, changing one's lifestyle to the point of taking the joy out of life, all while trying to maintain a positive attitude about everything is actually do-able for most men. I think I might rather be dead.
I told my dictator doctor at the Alberta Cross Cancer institute that I will never let her coerce me into another Eligard injection. I would rather be dead.
She treated me like a concentration camp inmate to be experimented on, and she downplayed the seriousness of the horrific side effects, deceived me by saying it was a six month shot when it continues to keep me castrated many months after it expired and never warned me that it might keep me castrated for life,
......and never told me how much benefit ADT would give in overall survival or life expectancy.
...nor was any alternative form of therapy offered or even discussed.
No followup care provider or offered to minimize side effects, just coercing continued injections of this toxic medication WITHOUT FREE AND INFORMED CONSENT.
It is criminal assault causing greivois bodily harm
They expect us to suffer our last ten or fifteen years living as their NARCO MEDICO CARTEL ZOMBIE EUNUCHS in order to sell more of these extremely expensive toxic ADT injections.
@robwells230 your experience really gets to the heart of why you have to do your own homework on treatments and be your own advocate for the healthcare you want to have. Sorry to hear it's been a nightmare for you, this is precisely the point I was making in my reaction to the video. I think many doctors assume their patients are focused solely on curing cancer and that the side effects of some of these treatments are just things they'll have to live with, and some probably try to minimize the potential side effects because they think the patient will believe them and psychologically handle them better as a result. Once you sign the consent forms, though, they're off the hook.
Well,here in Ireland,i have had radiation and now on adt. Side effects have been bad on firmagin and have had to come off it. Next week i start on Decapeptyl jabs into the arm. Firmagon jabs into the abdomen causeme manor problems. What theheck,psa now down to .145
I have started to develop gynecomastia from the hormone therapy. Will aromatase inhibitors like Femara not raise testosterone or interfere with the hormone therapy? Thank you❤
Please discuss the brand new FDA approved drug called Veozah (fezolinetant) for hot flashes. Can men on ADT take this med?
What about helping men with Modafinil? I was on this drug for shift work fatigue and it was a miracle. It improved my mood by making me feel optimistic, and helped a lot with the physical fatigue. I was more productive and got more done. My understanding is, it has been around for a long time and has proven safe. Modifinil will make you WANT to go to the gym and for me it wiped away the blues. Getting someone to prescribe it may be the challenge as it would be "off label". I am headed for hormone therapy and hope I can get some.
my luck, I was in the last third with an ungodly amount of HF
Hi, what parameters used post prostate removal for radiation plus hormone therapy treatment to manage gradual increase of PSA. Like what numbers ??
Hi, please reach out to our Helpline team so they can help you regarding your specific case: pcri.org/helpline
Iam hormontherophy past 3yrs my psa is2 5 My age is85yrs how longtime iwill take hormonthrrapy?
I had cyberknife radiation therapy and am currently on 4 additional months of hormone therapy with Lutron and bucilimide. I’ve had minimal side effects, however I’m worried about the possible side effects that may develop over next three month. Do I need to worry about those occurring with only 4 months total of therapy if im only experiencing minimal-side effects now? I’ve been on hormone therapy for 4 weeks now.Prior to my diagnosis I did resistance training 4 day per week along with hot yoga4 time a week. Slowing down a bit nowadays but want to keep my positive momentum
It take a while for the ADT CASTRATION EFFECTS to set in.
If you are only on it short term, you may be lucky and your Testosterone may recover in a year or so. It may take longer or may never recover, so don't be surprised if your side effects get much worse over time.
The only side effects that didn't broadside me was weigh gain. I easily lost 40 lbs by avoiding sodas and alcohol, eating less, changing my food choices, and lots of walking during my winter in Mexico.
Best wishes for a cure
A lot of things contribute to the side effects. Age and overall health etc. It's a tough decision for treatment. Especially if the cancer itself isn't causing problems yet.it is scary that no discussion was given about doing radiation only
What happens if you decide not to take the Hormones therapy but opt for just Radiation therapy?
have a happy life
I was 70 year old. Had surgery, failed, five month later had 33 Rt, both Surgery and RT without HT. I live on my own, could not afford to get the co-morbidity from HT. Come June 18 will be six years. Apart from some bladder incontinence I'm ok and very fit. I'm lucky , live in a village walk, three or four or six miles a day, depending how I feel.
I felt at my age HT would not extend my life re QOL.
Good luck.
Mood issues occur with hormone therapy and men need to be more honest with their oncologist about this.
I’ve been told I’m on HT for life. No mention of a Hormone Holiday.
Me too , my doctor is afraid to take me off it because my psa goes up quickly
I have also been told that I'll be on it for life
Should a patient follow the life long meds therapy? Why do doctors not want to allow holiday if pas stays under 1.
I think its fear of being blamed for a rise in PSA. The problem is we are all treated the same. Why is a dose of meds the same for someone who weighs 150 lbs or 250lbs? They weigh you for chemo.
The bit about chemical castration is the bit I hate.
Well so far my testical are now 1/3 the size they were. Wonder if they will go to pea size???
If your T level remains low after treatment, which is the norm,
Keep asking for Testosterone Replacement therapy to get some normalcy back in your life
What is the dr’s 1st name
Mark
Can you talk about triple therapy?
Can you just have radiation and not hormone therapy? I have two, 3+4, and two, 4+5 and leaning towards radiation (EBRT), but the side effects of ADT are concerning. Casodex and Eligard are the meds to be used
What can you do about the large breast
The cure is worse than the disease.
Warning!-do not get talked into hormone therapy. Mine was prescribed for 11pm this prior to my prostate surgery with a view to reducing the prostate size prior to the op-didn’t do a thing!-other than piling on weight to my waste, grew boobs, had hot sweets, and cried a lot-deviated my marriage!-just don’t them talk u into this!!