Have to admit, was hoping for a bit faster/deeper of a PSA response, but MO says no worries (yet), labs look great across the board except for slight anemia (still).
He started to say, "Well..." and I interrupted him and said, "I know, I was hoping for the PSA to show Lupron-like results without doing the Lupron!" LOL (And he did.) But can't complain about having no Lupron SEs, either.
I'm sure this summer's intake of beer and burgers and bread was not helping the meds, in any case. Put back on a lot of the weight I took off last summer. And I thought throwing away the larger pants would keep me from eating too much!
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noahware
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I am on exactly the same regimen for last 1 month after being OFF ADT for last 9 months. My PSA 2 weeks ago was 1.2 and ALP 69 and Bone specific ALP was 10.2. I started this regimen to prolong my off period from ADT and monitoring markers every 2 weeks.
I chose this regimen of Bicalutamide, Finasteride and Tamoxifen after reading the Dana Farber research "Finasteride and Bicalutamide as primary hormonal therapy in patients with advanced adenocarcinoma of the prostate."
By M-H Tay, D S Kaufman et al. published in annals of oncology.
Haha, I got back to 32 myself last summer! But this summer, it was a 34 to 36 transition. I am quite sure it was not a direct side effect of the meds, too, because over the years I have seen this movie play out many times before , with similar results: too much night-eating/drinking and the belly grows.
So I was watching my calories, but not in a good way. Of course I know better, but just slacked off on doing better. I hate to admit it, but I fell a bit into the mentality of "I'll just let the meds do the heavy lifting, I'm tired of being a good boy." Bad boy.
The secret to my 32 inch waist and 148 lb weight ... is as follows:
(1) Every day eating a big bowl of one cruciferous vegie ( Cauliflower, Brocolli or daicon radish) , frequently Okra, Eggplant, Ridge Gourd ,Bitter Guard cooked in mustard oil or peanut oil. (2) Only one cup of fat free Yogurt. (3) No snacking after 7 pm until 9 am (4) No sugary food of any kind (fruits allowed in limited amount) (4) No soda/fruit juice of any kind. (5) not more than 4 whole wheat breads in a day. (5) zero alcohol (6) zero meat/fish.
(7) one can of pure whey protein drink (30 mg protein) (8) unlimited amounts of tomatoes, herbs, spices like turmeric, ginger, onions certain leaves and roots etc.
(9) Minimum 4 mile walk a day, nighttime Yoga stretches in bed ,light weights 5-10 mins.
(10) Only drinks allowed : water, Black and Green tea.
That's great you can live that diet. I would be miserable. I eat pretty healthy, but everything in moderation. I am 6'1" and 155 lbs. I eat extra just to maintain my weight. Although I am very active.
Have been on 50mg of Bicalutamide,10 mg of Tamoxifen, and 1.25 mg of Finasteride since 8/15/2019 when PSA had reached 64,7. Current PSA is < .02 and side effects have been minimal. Yesterday’s round of golf was # 220 for the year and I’ve walked 0ver 2250 miles since last September. Eat healthy with a Mediterranean diet and weight has not fluctuated. Be patient!
I have a question for the guys on Bicalutamide, Finasteride and Tamoxifen. Is this a plan that your MO offered, a plan you asked for and MO agreed to or one you have found a way to do on your own? My husband is at a point he needs to find an oncologist with rising PSA after surgery and salvage radiation. How do you find MOs who are willing to think out of the SOC box?
This is not a plan that will be offered by many (if any!) MOs in the US. If offered at all, it is usually for much older men. But because it was once a bit more common and has some studies that show efficacy, it is something that MIGHT be considered by some MOs if proposed to them (as I did).
My first choice would have been ADT in the form of high-dose transdermal estrogen, but because that is still in trial (the PATCH study in the UK) my MO would not agree to try it. Most who do that therapy have a DIY plan that may get a nod from a doc who helps monitor labs, etc.
The plan was to follow that with high-dose T, but again, that is not something most docs want to touch with a ten-foot pole (outside of a mcrPC trial).
The first thing you should think about is what the actual goal is, since this is an admittedly less effective drug, statistically speaking. My is to begin SOME initial form of hormonal therapy with minimal SEs with the hopes of a response that is somewhat durable, to delay progression, before moving on to the next (and next, and next) potential agent that might give a durable response. So it is sort of a "one-year-at-a-time" plan, where hopefully the responses are more than a year!
Thank you noahware. We are not in the...throw everything at it at once camp and QOL is very important to my husband. We know some sort of hormone therapy will be next on the agenda, but want to find the one that will have fewest SEs and also find an MO who is at least willing to discuss some of the options.
I had a hard time finding such an MO in the NH/Boston area, but then again, I didn't/don't know the best way to find them. Where do you live? It seems to me that CA has more outside-the-box docs than the NE region.
I hard a hard time deciding between the all-at-once mentality or the one-at-a-time approach. I have Gleason 3+4 and very minimal mets, so am not feeling the same urgency that other men might. My general philosophy is, though, if the cheapest and easiest and least painful potential solution MIGHT work, and is safe and effective, why not try that first? My wife of course disagrees with that in many contexts, including PC treatment, LOL.
We are in the Denver Metro area, so not a big hub for the latest and greatest prostate cancer research. We don't even have an option for PSMA scan here, will have to go to UCLA if we want that.
Being "not a big hub" is not always a bad thing. The docs at the big cancer centers in NYC and Boston will not stray from SOC.
One name I can give is Dr. Flaig, U. Colorado at Denver. He is affiliated with the BAT trials of Dr. Sam Denmeade, who believes in (and tries) alternating ADT w/ high-dose T. The simple fact that he participates in this is a good sign that he understands and can help, either directly or indirectly via a reference.
I took some research papers to my MO who is older and has almost 40 years of experience practicing Oncology in a very busy setting. I attached a letter that I do not want to be on leupron like meds and will happily monitor my PCa closely . If the non SOC meds and supplements I choose has any adverse effect, my doctor, Dr XYZ or her team will not be held responsible.. She agreed reluctantly but said " just monitor PSA and ALP closely and don't miss any follow up appointments."
In our litigious society ,most doctors are afraid that if they move out of SOC and something goes wrong, they will be tormented by lawyers and robbed of their hard-earned savings. I think you will be better of with an MO who is over 60 yrs of age as he/she has seen all treatments ..new and old and also understands the manipulation done by SOC agents.
BTW, same thing happened when her Nurse Practitioner wanted to put me on Zoledronic acid infusions to prevent bone loss due to Lupron and Zytiga. I respectfully refused and asked for a DEXA scan . I told her if I have significant loss of bone density
I will accept treatment but only oral biphosphosphate called , Alendronate (fosamax) and not infusions. I never needed any meds as my bone density came OK and FRAX measured my risk equal to other men of my age. I increased my turmeric intake and my weight training (no very heavy weights) and its 18 months now and still doing good as far as bone loss goes.
IMPORTANT NOTE: If you hit prostate cancer cells hard and continuously with androgen deprivation ...they start changing from androgen sensitive to androgen resistant or/and worse..neuroendocrine type.
So choosing an effective, milder and intermittent treatment can delay resistance and
conversion to NE type which is very aggressive variant. Use of proper antioxidant, anti inflammatory foods are also helpful in keeping PCa less aggressive.
I just read some papers about castration resistance and NE differentiation due to ADT.
I have 4 sizes of pants now. 30,32,33,34. I am now back to 32. And feeling much better. Summer is for beer and burgers, for some of us. And steak on the grill.
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