First, let me say I don't think any of those treatments mentioned will hurt you. Some may indeed help. There are many different types and grades of cancer and don't think anyone can say any one of these could not be beneficial for every patient.
I am disappointed that mind/body was mentioned. Meditation and other forms of mind/body exercises can reduce stress which will have a benefit for cancer patients.
Yes My MO Dr Adra have many RN’s, lab tech’s, Med assistants, pharmacists, teams of caregivers, lots of listeners.
That’s not necessarily my concern.
Hear me out Magnus1964, please.
I am trying to:
1. Over analyze or understand my advancing PCa now!
2. All my questions/concerns have been answered in my short time I’ve been in ADHT 2nd time again.
3. For example: why can they not do SBRT or IMRT in combo w/ ADT Lupron shots?? They my MO says not yet. But why not attack target my cancer more aggressively?
4. Yes: my next 68Ga-PSMA-11 PET should be in scheduling queue to be done, late Feb/early March 2020.
4.1 I’ve asked about CT and or NM bone scan and got the answer(s) not yet. Or not ready for those I think.
You might find these views about the "whack-a-mole" approach to "oligometastatic" prostate cancer of some interest to ponder over the next few months. (I had very similar thoughts some 6 years ago, but finally came to terms (rationally and emotionally) with the fact that my very many, widespread mets required systemic treatment. ) To my knowledge, there is little strong level of evidence from Clinical Trials.
I will look see this video today. 2014 you would think they(med oncologist, treatment) fields have come a long way since '014. Five years going on six. But maybe not.
My problem is I want “Perfection and Progress” together. Simultaneously, concurrent, with every attack medicine or treatment or biopsy surgery or _ _ _ _ _ _ full in the blank.
Yes, I’ve got one of the best Team of Cancer treatment specialists in the USA. The IU Health Melvin & Bren Simon Cancer Center downtown Indianapolis, IN. Ranked top of the best in US. I will definitely send ahead my concerns/comments list document this weekend to my Med Oncologist and his lead RN. Do you want a draft copy of it Magnus1964?
Regarding Lupron side effects, don't worry about them until they happen. I've been on it for over a year, now with Abiraterone, and in many ways I feel better than I have in years. The hot flashes are annoying, but generally the side effects are preferable to cancer symptoms.
Yes, 1st LUPRON assistive shot in the hip(butt) is working. My PSA went from 8.5666ng/mL to 2.9ng/mL in 6 weeks. T-levels dropped big time from 296 to 10.9. Perspective is good so why should I be worrying? 11 days to # 2 Lupron Depot. But 2 hrs before injection more PSA, Testosterone and a bunch of composite, comprehensive blood labs. Down is good in PSA and T-levels.
I got to experience the hell of symptomatic, untreated stage 4 prostate cancer. There was no doubt in my mind that whatever was going on, it was killing me. I now compare all side effects to that. So far, the side effects I've had including a bone biospy are nothing in comparison.
I tend to just read and not post on this site. But I think your advice regarding Lupron side effects—to not "worry about them until they happen"— needs a bit of qualification. So I'll jump in.
Metabolic syndrome, a serious side effect of ADT, is hard to reverse. Muscle lost and weight gained as fat (i.e., sarcopenia obesity) is also hard to reverse once it has set in.
One small study out of Israel from about 15 years ago pointed out how ADT can erode spousal relationships. The psychological impact of ADT can be worse on the partners of patients than on the patents themselves. That was documented almost a quarter of a century ago in an article in the journal Cancer. It is not clear that a side effect like that can be easily managed, if one isn't preemptive about the indirect impact of ADT on the partners of patients as well as the direct impact on the patients themselves.
There is an academic paper submitted for publication right now, which shows that the side effect bother from ADT can be significantly reduced, if one is aware to the side effects and management strategies for them BEFORE the side effects settle in. [Patients (and partners) can email me directly if they want more information on how to both manage and avoid many ADT side effects. ]
What also should also be noted is that age is a factor in terms of the bother level from many ADT side effects. Generally the bother is less the older one is. In that regard, how old are you and how old is the people in this thread who are worried about ADT side effects?
My interests here are both academic and personal since I have been on one form or another of ADT for most of the last 18 years.
Hi Richard, good clarifications. I just turned 52, but my libido started dropping back around age 40. In a mid-life crisis moment, I almost had an affair. For me, no libido is better for marital relations than a waning libido looking for anything that can bring it some excitement. I'm forced to think with my head now, and that's an improvement
As for other ADT symptoms, I've been on and off medication for anxiety and depression for the past decade, and am currently on them. The combination of a cancer diagnosis and ADT is known for causing anxiety and depression, but I went in being well practiced in managing my mental health.
I do get hot flashes regularly, but they come and they go, and other than being annoying they might disturb my sleep one night a week.
Fatigue was an issue, but seems to be abating with time. I'm now working full time and celebrated the anniversary of my diagnosis by running a half marathon. It was my seventh half marathon and far from my slowest. For me "fatigue" means I napped the rest of the day after running 13 miles.
Abiraterone + Prednisone causes weight gain? Not for me, I instantly started losing weight and had to eat when not hungry to stay at a healthy weight. I know at least one other member here who also lost weight on Abiraterone.
So yes, men should be aware of the possible side effects of ADT, and stay as active as possible both physically and mentally to combat them. But they shouldn't worry that they are inevitable. Many of us "lucky" enough to have had symptomatic cancer have seen treatment improve our quality of life while also adding years to it.
Sorry, but I laugh sometimes when I read some of these nuanced discussions about the side effects of ADT. Many of us here including me would be deadwithout it.
50% of my first oncologist visit time was shared with my hospice crew. Due to my dire circumstances at the time, they thought that hospice might be my better choice.
Its 13 months later and I’ve had 6 months in a row at <0.1 psa and <20.0 T and all my severely whacked blood chemistry is back to normal. All as a result of adt. Do I have a truck load of ugly nasty debilitating side effects .... oh my , yes I do .... know what tho , for me personally and my wife ... “ this is way better than the alternative “ , my wife likes to say ( easy for her to say yayahahahaya )
I would have been dead many months ago, if not for adt. Other people’s mileage may vary, that’s just my take on things.
Kaliber what a way to sum it up. ADT does what ADT does for a reason. like drop my PSA from 8.566 Sept 10th to 2.9 Oct 17th that's 6 weeks worth of 1 shot.
Will see what my PSA and T-levels facts are in 10 days. Thanks for the attitude perspective friend.
Couldn't agree more. The more one is prepared, the more one can try to mitigate the side effects of ADT/Lupron. Try "Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones." My docs offered a few vague comments about the side effects of Lupron. What they told me was nowhere near the devastating side effects that I experienced. 7 mos from last injection and side effects are just beginning to lessen and I'm still not sure which of them are permanent and which may improve. And, yes, of course, preferable to the debilitating effects of PC.
Re the comment about IMRT and ADT concurrently. I thought that was considered standard practice??? There are fancy words for it (adjuvant and neoadjuvant) but the idea is ADT pre, during, and post radiation (the issue becomes how long prior and post radiation...literature is not definitive). And, given your concerns about your MO,
methinks I'd be getting second and third opinions.
Anyhoo, good luck to you; it's a tough/rough road as everyone here can attest to.
I agree completely! I bemoan the fact that absolutely no information or guidance was given to me when I first started ADT. I had to do my own research and take mitigative counter measures, which I have conveyed to my urologist. I suspect that many men would resist or forgo ADT if they were informed about the side effects. Cheers, Philip
But I know don't answer with a contradiction. ADT is the gold standard and it works for a while, whatever a while is. QOL is a priority of all of us I believe, so ADHT side effects can and should be presented, answered by our Urologist or Med Onc or both. That's exactly why Im typing on this HealthUnlocked great support site. I want to know more about side effects. I'm on round 2 of ADHT, my 1st experience did not bode well 2008-2012 more on than off Lupron and Casodex and different forms thereof. May 2011 I Sudden Cardiac Arrested. Was my Lupron / Casodex too too much for my already sick ill out of rhythm heart? I'm not gonna try for 2 strikes or 3 strikes.
what kind of heart problems did you have before starting ADT? Do you take anything for your heart disease? I have coronary artery disease and I've been on Lupron since 2016. My latest heart stress test showed better than the three years previously. Are you taking heart attack prevention measures?
It’s a long story not really but I didn’t know what was lurking in my Cardiac life pre PCa until it hit me.
1. Yes, I had cardiomyopathy high blood pressure Dx’d since 1990’s
2. Was on blood pressure Med’s beta blockers, calcium channel blockers and hydrochlorithiasis(water holding pill) in various forms and doses. But those medications were not really controlling my BP nicely.
3. Escalation BP but I didn’t heed the symptoms too well.
4. Like I said started Lupron w/ Casodex 2008-2012. After 42 IMRT radiation zaps Sept-Dec 2005 failed.
5. Back to June 2005 when Dx’d with PCa they my RO Med team found out I had a Neurogenic bladder. It wasn’t working well, no stimulation to pee. Wonderful news.
6. I had 1st Urodynamics voiding test Aug 2005 to determine why my 54 year old bladder was in urinary retention mode. During start of urodynamics testing I was terrified to death, my BP skyrocketed to 230-120’s I’d something like that. Spent next 3 days in Cardiac care floor over Labor Day 2005.
7. Still no idea why my BP cardiac Rhythm was crazy.
8. Life went on until my PSA leaped forward in 2008 17.4mg/mL or thereabouts.
9. Start ADHT Lupron + Casodex every 3 months then 6 months, till it finally hit me May 12,2011. Three years On ADHT med’s and I had discovered shortness of breath and dizzy spells. It’s got to be the ADT meds! But.
10. Final point: drove myself to local hospital from home, it’s right across the field from our front yard, 3 min drive to ER. And I Cardiac Arrested in ER 3 hrs later. 12 long days in CICU rm and got my first ICD/pacemaker 05/17/2011.
11. Main Dx for SCA was Non-Sustained Tachycardia. My cardiac Rhythm electrical signals were in total disarray. My Left Atria wasn’t syncing nor was my right Ventricle.
Yes I was still on Lupron Depot and Casodex meds combined with my Heart stopping habit “Drinking” stopped my heart.
GeorgeGlass I was drinking seriously daily a lot for 35 years up until 3 months before my SCA happened. And ADT meds combo interfered inhibited my 35 year old alcoholic heart. No seriously ADT med’s most of them, can cause Long QTc syndrome, irregular AFIB conditions and low or high HR.
Question: did my sick heart, or high blood pressure or alcoholism or ADT treatment’s long term cause my Cardiac Arrest? YES! All of the above!
It’s been a mental, kind of psychological thought on my mind since 05/12/2011.
Appreciate your patience and concern about my medically complicated complex life urology and cardiac wise, throw in neuropathy too.
Hey Doug. I empathize with you my coronary artery disease in when it was diagnosed right before it literally a couple days for a supposed to get surgery on my prostate is somewhat similar to your situation. very upsetting and when I think back on it all and pisses me off because the medical people that I saw or substandard from the moment that my PSA started the rise but I have to try to forget all that. I work hard not to focus on those negative thoughts. You're very cerebral and you have a good handling all the details are going on in your situation. That's the way I am too but from all my research I think my gut instincts tell me that the best thing for you to compliment your medical treatments what do you need is to work more on relaxation techniques some people kind of scoff at that stuff but it really makes a difference. It's some people it makes a huge difference. Try doing the relaxing styles of yoga that focus a little bit more in the medication try something like Tai chi or Qi gong. Here's an article I just had recommended for me today by Google. eurekalert.org/pub_releases...
read the remarkable impact a transcendental meditation had on the people that were recovering from heart attacks. As much as I dislike Google and their political bias positions the first page of my cell phone where the Google search bar is cuz I have an Android gives me recommended articles to read and they're all families in swamp sent to me based on what I read in the past so I got a lot of great medical information on there.
President Thai what's in that article and see how things improve for you. I also try to remind myself that I'm really just a tiny speck in the big scheme of the universe I believe in God and I believe in Jesus Christ but I'm just a tiny speck. When I put my minimal impact in the universe in perspective it makes me relax a little bit and not get so excited about trying to make a big deal out of every little thing I think that in turn helps improve my health and every way. Forgive any grammar spelling mistakes I'm using voice dictation on my cell phone and I don't have time right now to go and proofread it.
Isn't life interesting, I seem to make it more interesting or complicated. Exceptionally well put information George. Relaxation is not one of my specialties. A case in point: March 17th St Patties Day and I had my Urethroplasty stricture plastic surgery repair surgery scheduled 07:00- done 10:00AM that Thursday Irish holiday. The only green I was seeing was surgical uniforms and materials. Or was it blue uniforms.
Yes, this Monday 08:00 I sent my med oncologist my Top Seven Comments, Notes, Concerns prior to my revisit this Tue 12/10 and 2nd Lupron shot and multiple labs.
Shockingly, at 10:57AM this Monday I got an anxious phone call from my MO's RN Leanne right as I was relaxing on the Treadmill @ Planet Fitness. I always get the lest expected med calls whilst I exercising. Go figure. In short Leanne-RN was not sure exactly why I sent my MO doctor this many ?'s. Or was she?
She did specifically say 2X's that Dr A. will answer all of your questions next Tuesday.
…. my 1st of "Top Seven" points was probably the reason she called me per Dr. A. order. Here is that ?
Our “Communication Methods” seem to be not sync’ing or meshing. Like my Office Visit summaries or IU Health msg’s? How can these be improved? Please? #2. and #3. questions for example:...
I actually told her, RN Leanne that I was really consciously concerned about my ADT effects, now 2nd time around, on my Cardiac Rhythm functions! That's why I trying to communicate so transparently with him. I think she got my 'heartfelt rhythm' anxious worrying concerns. George my cardiac functioning is the greatest it has been since May 2011. My anxiety and worrying and communications with med doctors has not.
I believe my MO RN got my message of concern about my Cardiac worry whether it is #1 or #2(cancer) or vice versa. She said we will see you next Tuesday. That's 3 days out.
I know what you mean. I stopped going to MD Anderson because their communication was so awful. I like to be able to communicate when not at the hospital. Try the relation exercises I mentioned and let me know what you think. They will help with everything I believe.
I’ve got the transcendental Meditation study id’d and put on my agenda to read study while I’m down in Indianapolis Monday/Tuesday. I’ll take meditation or relaxation therapy and give it a chance.
I believe I did get my MO’s RN attention on her phone call this last Monday. You know the fastest response to my questions comments concerns notes I ever had. It could be interesting at my MO office visit Tuesday AM with nurses(s) and then my Med ONC updates. I’ve never seen my MO’s head RN yet. She was
extremely concise to the point; that Dr A. will answer all my questions. I’ll be an avid listener and copious note taker. It should be interesting. Thanks my friend.
that's great Doug, let me know how the meditation intro starts out for you. They say it takes a while to master and start being effective. Good luck with the appointment as well. I ask a lot of questions too but I notice that my questions usually lead nowhere productive. Maybe one day they will. Good luck man.
You have a medical oncologist and you haven't had a CT or bone scan yet ??? My urologist immediately ordered those as soon as my biopsy came back Gleason 8 prostate cancer. You mention a PET scan. I would think these scans would come first.
Not really. I mean CT& NM bone scan vs my Urologist/MO scan. I had an advanced 68Ga-PSMA-11 PET/CT scan 8/01. That advanced scan did exactly what my previous CT AND NM bone scans did not show or ID. Check out a 68Ga-PSMA-11 PET SCAN it’s nuclear and finds any AVID lit 🔥 up hot spots anywhere in my body. It did that marvelously. That means I’ve got an AVID Cancer square spot 1/2” x3/4” on posterior of prostate gland and smaller but AVID 🔥 UP spots on my Pelvic lymph nodes and some abdominal lymph nodes.
No WSOpeddie I was hoping for a CT and NM scan to further screen for more cancer activity. Those are not necessary yet. My next 68Ga-PSMA-11 scan will be late Feb or 1st March 2020. I could send you my PSMA PET Scan. Seriously I’m trying to over test and evaluate myself with every thing in the medical tracking arsenal. Oh yeh a CT & NM scan are both in my notes/concerns for my wonderful MO
appointment Dec 10th. 1st one to receive my concerns/? List is his RN and my cancer Team. That VIP list is going out this Sunday with teeth.
Hope this helps you understand.
Doug
Hey guy . I’ve done a few of these on the list and I’m in remission . Each to their own pathway towards healing .
While some alternative therapies can help, many don't work. Research shows that up to 30% of people with cancer have tried a so-called "cure" that doesn't have any benefits. They can be a waste of time and money. Even worse, some of these "remedies" are dangerous to your health and may affect how well other cancer treatments work.
Alkaline Diets
This is based on lab studies that show cancer cells can't survive in a low-acid, or alkaline, environment. The theory is that eating certain foods and staying away from others will lower your body's acid level and keep cancer cells from growing. But what you eat doesn't affect how acidic your blood is. Your body controls that balance.
Cannabis Oil
Made from marijuana plants, this is also called hemp or marijuana oil. Some think it can kill or shrink cancerous tumors, but no science backs that up. And while cannabis may ease the side effects of some cancer treatments, like nausea and loss of appetite, talk to your doctor before you try it. Some compounds in cannabis may affect how certain cancer drugs work. They also cause side effects like memory and attention loss.
Cesium Chloride
This is a type of salt sold as an alternative cancer treatment. The theory is that it keeps cancer cells from spreading. Researchers have found no proof of that -- a small study showed that cesium chloride didn't help people with cancer. And side effects can include diarrhea, nausea, and an irregular heartbeat. In some cases, it can lead to serious, possibly life-threatening, heart problems.
Black Salve
This is a paste, cream, or ointment made with zinc chloride and herbs, such as a plant called bloodroot. Some say the salve targets cancerous tissue in your skin, but that's not true. Black salve damages any skin that it touches. It can destroy the top layer but leave the cancer underneath. And it can cause side effects like infection and scarring.
Megadoses of Vitamin C
The idea that very high doses of vitamin C can treat cancer started in the 1970s. It was based on research that suggested the nutrient is toxic to cancer cells. But studies show that taking megadoses of vitamin C by mouth doesn't do anything for people with cancer. And it can affect how certain chemotherapy drugs work. Researchers are now looking at whether shots of vitamin C can help.
Amygdalin (Laetrile)
This is an extract made from apricot pits and other plants. It's also known as Laetrile and vitamin B-17. Your body breaks down amygdalin into a toxic chemical called cyanide. Some people say this poison targets and kills cancer cells, but studies show it doesn't fight cancer and can lead to cyanide poisoning. Side effects include headaches, dizziness, and possibly life-threatening low blood pressure.
Essential Oils
These are extracts made from plants, such as lavender and tea tree. You typically put them on your skin or breathe their scent. Fans of these oils say they have properties that can fight cancer, but science says that's not the case. They may help ease some side effects of cancer treatments, though, including anxiety, nausea, and depression.
Positive Thinking
Research shows there's no link between personality traits and your chances of getting or surviving cancer. What a positive attitude can do is improve your quality of life during diagnosis and treatment. It can also help you better live with and manage the disease.
Applied Kinesiology
This is based on the idea that your muscles are linked to certain organs, and muscle weakness is a sign of a health issue in those areas. Also called muscle strength testing, some use it to diagnose illnesses, including cancer, and make treatment decisions. But no science supports it, and research shows it doesn't work
Enemas
With this, a liquid, such as water or coffee, is flushed through your colon. It's thought to detox your colon and intestines. Supporters think that if you rid those organs of toxins, your body is better able to fight cancer cells. But there's no proof that enemas can treat cancer or boost your health. And doing this often may lead to infection, dehydration, or a tear in your rectum. It may also affect the balance of electrolytes in your blood.
Gerson Therapy
A doctor created this program in the 1940s as a treatment for migraines. Now some people use it for cancer. It involves a strict regimen of drinking 13 glasses of organic juice each day and eating vegetarian meals prepared without salt, spices, or oils. You also take a number of supplements and get regular enemas. Not only is this program not helpful for cancer, but experts warn that it can be harmful because you could miss out on important nutrients.
Ozone Therapy
Ozone is a toxic form of oxygen. The basis for ozone therapy is the idea that extra oxygen makes it hard for tumors to grow. But ozone doesn't have any medical use, including treating cancer. And it can lead to serious side effects, like vein inflammation, chest pain, and heart issues.
Just because you saw it on the internet, doesn't make it true. Where are the links to the references supporting the articles claims? I'm not saying the claims are false or true, but like any thing else, due diligence is required. Best of health to you
I never ever really considered the relationship between low PSA like << 2.0 to be a decision point for no Scans. Sounds like an excellent borderline to Not scan, dbrooks_h
These kinds of articles make me angry. The article seems to be written by a 'standard of care' physician interested in protecting the 'standard of care' turf. One could easily make a list of 15 standard cancer treatments that are or have been not only unsuccessful, but also harmful. The history of standard of care cancer research is one of narrowmindedness, corruption and incompetence. Hundreds of billions of dollars in research have been wasted since the 1960's.
Yes absolutely Prostate Whisperer, I left jumped ship from my 4th Urologist locally because He and there office seemed to just want "Standard of Care". That gold standard thing.
Its not gonna happen, I hope or think with my newest team of MO and (2) Urologists.
The article presented gives the false idea that a good cancer diet doesn't help. All of us know that eating only broccoli will not cure your cancer. But a good cancer diet - which will try to push your pH over 7 - just enchances the first line treatment of say Lupron or Casodex to be that more effective.
The article gives the idea the only thing that will help is chemo, radiation and ADT. Which is bullshit. There are numerous testimonies of people who turned around their cancer with stuff like moringa elixir. I myself had great success with artemether. There are so many publications on the combination of capsaicin, lycopene and curcumin. Take for instance our friend Nalakratz here on this forum. And so on.
New hair shop called Hair-R-Us underthat on the window it says Unisex. I went in and the lady asked what can we do for you. I said, well i have never had any Unisex and I thought I would try it. She looked at me and said, you got five fingers on your hand, so you have had Unisex.🍸🍸🤠
I just uncovered my June 2005 1st Biopsy report Gleason 3 +4 or 7.
I'm confused my latest PSA on Lupron 6 weeks in was 2.9ng/mL 3 weeks ago.
How is my Gleason 'baseline', guess its called that, relate to what level PSA calls for intervention measures? Is there a trigger level for more treatment or Scan times?
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