Tonight, I start my journey to hopefully a full recovery from G7 (4+3) PCa. I begin taking 120mg per day of Orgovxy before I start radiation. (Next week, I have my fiducials and SpaceOAR procedure which I will ask you all about another time, as I am extremely nervous, and don't know what to expect, about going through that procedure). My MO hasn't been very helpful or accessible. While taking this medication for 4 to 6 months, should I be on a certain type of diet, e.g., high protein or low carbs? I naturally have a high metabolism. I am thin, I've never had a weight problem. What about certain vitamins or supplements that I should be taking to counteract the inevitable fatigue or hot flashes? A friend of mine told me to take creatine?? What about weight training? Up until now, I do very little exercise, maybe some cardio once or twice a week (mainly because I hate going to a gym or working out). Should I start taking drinking coffee or energy drinks? Will I need sleep medication for what a friend of mine told me that I will likely have insomnia? Any advice, suggestions or guidance will be much appreciated. Thank you!
Diet and Exercise Regimen, Vitamins, ... - Advanced Prostate...
Diet and Exercise Regimen, Vitamins, while taking Orgovyx
I can only share my holistic program with you: 1. Plant based diet with fish 2. Daily exercise with weight lifting, gymnastics and jogging 3. Meditating around 45 minutes.
I stopped taking almost all supplements, focusing on diet intake of relevant calcium, magnesium etc.
Up to now this helps a lot for both, overall health and managing side effects.
Sorry, I have no special insight re your questions.....you are farther along than I am...2nd mtg with RO tomorrow this Wed.
Maybe you can help me with something I wanted to discuss with the RO.
I would like to use Orgovyx for ADT, but I'm anticipating a "no" from the Kaiser RO.....several reasons he could use .....untested with radiation and/or Kaiser insurance won't cover for this treatment, unless special situations.
Looks like you are probably covered by Medicare, and probably have a Part D plan....or drug coverage under an Advantage plan? If so, have your needed to jump thru any hoops in order to be presribed Orgovyx as your ADT drug, and to have insurance coverage for use with RT?
Thanks so much!!!
I have private insurance, United Health care, through where I work, not on Medicare yet. At first the insurance company accepted Orgovyx daily, for 6 months. But, they wouldn't accept the first day loading dose of 3 pills. I fought with them and told them that I would pay for the extra two pills on the first day, out of pocket. They said no. Then I told them to just dispense the approved once per day pills and I'll take an extra two pills on the first day, and just short myself two days at the end of the 6 months. They said no. Finally after three weeks of wrangling, the insurance company agreed to the loading dose on the first day and I finally received the medication, 100% paid for my the insurance company, no co-pay.
Thanks and congrats. Did your Doc need to interact with the insurance co. in order to obtain approval?. As you proably know, even Medicare D plans consider this a 30% copay drug until you reach out-of pocket max of approx $3000 this year. However, I have not confirmed that these D plans accept the drug for use with initial RT.......except for possibly exceptions for certain men? In another lead post, there is a discussion of possibly needing to use Orgovyx for longer than the normal time.......with Lupron, etc, there is a longer delay after the treatment period, eg your 6 months, before T rises above castration level.....and studies have used Lupron when determining duration. You might mention to your Doc?
Creatine is the worst thing you could take bc it raises DHT levels - DHT is what drives prostate cancer Phytoestrogens such as flaxseeds are good for Pca also all the foods that block DHT - reishi mushrooms watermelon etc
I didn't know what are "reishi mushrooms". Other than watermelon and flax seeds, what other foods should I be concentrating on?
There are no conclusive trials for that Lizzie anywhere,also no definitive studies that say sat fat is the main driver of PCa? If you have some links to any I would be interested in reading them,I would think eating a wholefood diet across the baord as natural as possible,no junk,or high processed so called plant based items would be the best way to go,but that's me each to their own
Best diet is plant based and whole food. Orgovyx can screw with your blood sugar so try to limit your carbs. Long term ADT can affect bone density. While you’re only on a short course, vitamin D couldn’t hurt. Weight bearing excercise is the best thing you can do to assist your recovery. Try an hour four times a week. A trainer can help a great deal. What kind of radiation? EBRT, SBRT , Brachy ? It would help to have more detail to guide you further.
Weight training is more important than any of it for this. If it were a drug it would be the first one prescribed.
Age 81, have been taking Orgovyx since December, and it's a non-issue. Slightly warm sometimes. Sleep well except for peeing, which started years ago. Hard to say if getting weaker, but was given a set of home exercises to do, and not being too faithful.
Partner had Orgovyx, no issues other than fatigue. It was the Lupron that did him in. He also lost 15 pounds going through proton therapy, due to the scheduling and body function demands - full bladder, empty rectum. Try to eat healthily and don't lose weight: good oils and fats from salmon, plants (avocados) will help keep the weight on. Work out best you can, even if it means chair yoga. Anything>nothing.
Fiducials and SPACE OAR can be done while being knocked out. I had a bad experience during the biospy so I insisted on being knocked out. It was really easy that way. No stress!
Were you in any pain or discomfort after the procedure?
None, zero. I went home and continued my remodeling project.
Red meat animal fat should be avoided as they induce prostate cancer cell growth; that means beef and pork. Some sources, (Gerber, "How not to Die") say avoid chicken and eggs due to choline. Plant based meat is good. Lycopene, found in tomato-based products, like ketchup, tomato soup, pasta sauce, taco sauce, V8 or tomato juice, etc. should be taken as much as possible, as they prevent growth of, (and may kill), prostate cancer cells. (Must be cooked and taken with oil to be absorbed; I take with a few potato or corn chips.) Watermelon also has lycopene, but is rarely cooked or taken with oils, so might not be absorbed. Also you might take lycopene supplement pills or put them in cooking._ Other foods that may assist your immune system to fight off PC include: black pepper, curcumin, cardamom, hot peppers like jalapenos, (capsaicin), paprika, bitter melon, walnuts.
Wow, thanks a million! That is all good to know.
Hubs also takes a tablespoon of black seed oil. Anyone have experience with that?
Not to be picky but it's Greger, "How Not to Die" in case you want to find it...
You should have already been doing resistance training. You need to do it while on radiation and hormone treatment. Suggest you increase the cardio also.
First of all, I recommend you put some staging info in your bio. Are you on firmagon yet? For resistance exercise, a set of stretch bands and a couple hand weights are a good start. Quantity is a big variable --the more the better (10-12 hours a week.) Aerobics via YouTube is good cardio. Have fun exercising and expect to do it forever.
Thank you very much for your suggestions. I'm not sure if I have the time and self-discipline to do 10-12 hours per week. (I hate exercising!). But I think I will start with 3 to 4 hours of resistance training, per your suggestion, and 1 to 2 hours of cardio, and then work my way up from there. Currently, I do only 1 to 2 hours of cardio per week, at the most, and no weight training. I don't want to jump into such an ambitious exercise regimen at the beginning. Thanks again!!
ADT makes you age 2x quicker-- muscle loss (sarcopenia) and bone loss (osteopenia.) Get a bone density test (DEXA) now to have a baseline. Of course you should start gradually. I got machines I enjoy using -- BowFlex (used PR1000), Elliptical Trainer (used Horizon Fitness), I put a large exercise mat on the living room floor... Not all at once -- the PR1000 came first, the mat a close second so my wife and I could do aerobics together, which has helped her fitness and mental disposition a _lot_.
BTW, what is firmagon??
Your question was too late it's already firmagonE.....
Good Luck, Good Health and Good Humor.
j-o-h-n
Firmagon is usually given 2 months before radiation therapy. It has a fast testosterone-reducing effect (thereby slowing cancer metastases to a crawl) and makes tumors more vulnerable to radiation. After Firmagon SOC is lupron + abiraterone. YRMV -- there are other choices of meds but these are proven SOC and many patients are "cured" (as in, no BCR and they eventually expire of something else.) I can testify that all my exercise has me in the best fitness I've had for many years. You should pose your "what is" questions to Google, and while you are at it, look up CHARTED and LATITUDE trials, and also NCCN/ASCO treatmnent guidelines pertinent to your PCa specifics. What you learn will greatly improve your communications and credibility with your MO/RO. Exercise helps your brain work better (see brain fog for those on ADT who can't/won't exercise.)
Degarelix is a type of hormone therapy. It is also known as Firmagon. Degarelix is a treatment for hormone dependent prostate cancer. Hormone dependent means that the cancer cells need a hormone in order to grow.
Good Luck, Good Health and Good Humor.
j-o-h-n
Is Firmagon similar to Orgovyx which is the medication that my MO put me on?
So I am your carbon copy ,same age ,gleason 4-3..orgovyx 4 months.imrt 20 tx ( same as proton)..psa.14....my caveat to you is ask your doc if you even need Orgovyx..ask many questions..will my natural t recover? will I be able to have erections? if my t doesnt ever recover which happens to 80 % over 60 y.o can i take trt to replace natural T ? will the trt trigger a recurrence? ( listen carefully to those answers and then decide..about adt with a gleason 7 )..they rarely tell you about the fact your natural t won't recover ever at our age..and wont directly answer you if trt will cause a recurrence and your stuck being hypogonadl, no libido (sex),metabollic syndrome, osteoporosis,cvd) and all the other symptons from orgovyx making you hypogonadl...the radiation was great..piece of cake..and worked , the biggest mistake i made was 4 months of orgovyxx.my t never recovered..its been a nightmare for me.. these questions may save your quality of life..ask your doc what's the survival life benefit of adt -orgovyx..its about 5-9 % -definitely not worth trading the quality of life for it..as an aside i passed on the spaceoar -(might hide microscopic cancer ) no problem without it rectum and uretha fine..gold markers under iv sedation. good luck in your recovery
Wow, Jws13, your experience is a real wake up call. I always assumed that the T would come back within 2 months of stopping. I relish my current quality of life. I just started the Orgovyx a few days ago. The first night with the loading dose was rough. I have a big family history of PCa, my father and grandfather died from it, my brother had his removed, and I lost some close friends to PCa. So, now I'm in a quandary what to do. Thank you for sharing your experience, I will definitely take it to heart and give it some serious thought.
Perhaps it might be worth mentioning that there are some general rules regarding medicine and prostrate cancer but the one big caveat is we all react differently.
For example I was on Lupron for six months prior to radiation and two months after I stopped the Lupron my T was 233 and continues to rise. This is not “normal” but that is how my body reacted.
May I suggest you search for the side effects of your drug reported to the FDA and you will find what was reported to the FDA upon application and in it you can see the percentages for yourself rather then just reacting to what individuals post.
Also remember those without issues tend to not post as much or as often. On this forum you get some great info and you also get the horror stories. Your job is to research for yourself and with the help of your doctors choose the best alternatives for your case.
ADT/Exercise and QoL thanks
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