Hmmm. I was hoping for lower PSA...but, alas. NO. However, Dr. Cevallos, when we corresponded re. the BIRM, said the tests would show improvement (as they have so far)...so I am sticking with it. Still feeling better than I did without it....even though it seems like I am feeling the build up of Xtandi issues...and now the added issues from Xgeva(a little bone pain in ribs)...Still keeping on keeping on. If I didn't go to the oncologist office for them to remind me I'm supposed to be a "boy in a bubble" I wouldn't even feel that bad. This time..I went in feeling GREAT...very optimistic and excited about planning a summer holiday. When she walked into the room...the first thing she saw was a SMALL scratch on my left arm that was almost healed with a small scab on it. "What's THIS?" she shrieked..."YOU CAN'T do this"....& "what happened?". I said that I was washing my little Sparky (11 pounds) in the shower with me in a short sleeve shirt so he doesn't scratch my tummy...and he got excited and scratched my arm. She said "YOU CAN'T do that"...~~so I guess I am supposed to be a "boy in a bubble"...~~then when discussing plans for a 5 to 6 week holiday...in August..she said it was possible, but I need to confer with the main oncologist next month...and that I can't go more than 4 weeks without blood work because of being on Xtandi.
Talk about leaving the doctor's office "deflated". My actual bubble felt burst....LOL.
Then I start reading on here what kind of diet I should be eating and all that seems left is NO DAIRY and only certain vegetables and 4 ounces of "wild caught salmon once a week". It makes part of the long road trip we wanted to do seem USELESS. It was to the Minnesota State Fair...(biggest in the country)...where food (and not vegan) was going to be the highlight of the trip for me. To go all the way there to eat a corn on the cob (hold the butter)....makes the trip seem a little anticlimactic. Life is Beautiful.
gjohn
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greatjohn
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appx start date (July of 2018) of Xtandi my PSA was 1.1 ~~ it's gone down a bit(as low as .88) but for the past few months it's been on a gentle rise upward to it's Current (and highest) of 1.67
the doctor on Friday said she's not as much worried about the number as the trend...and that makes me worried...because my trend is "up up and away"....and it ain't in "my beautiful balloon..." it's in my hot air, leaky one...LOL.
All the Best, and Happy Sunday.
gJohn
p.s. the strange part is I feel so good and look so good (the nurses keep telling me they can't believe I'm 62)...but my numbers just want ever give me a break!
Is it realistic to buy BIRM for my Dad? And what I mean is that his PSA is much higher than yours and initially dropped a lot but now it’s on the rise by 4 pts (117 now but down from 300+) He has been on it 54 days now. Xtandi, Xgeva, Lupron. He is 76.
there are lots of people that are on here who would say yes. I will not...I will say that I'm glad I am using it for the improved energy, clarity and help with pain. I would say you should google "BIRM CANCER" and see what comes up....and also do search on here of just "BIRM" and see what you think and maybe discuss it with him. The concentrate has to be bought from a different source, but the "regular" strength is available for Amazon and Ebay. I used Ebay. Now I buy from BIRM directly to get Concentrated. The link is in one of my earlier posts. Read and see what you think,
I'm 7 years out with stage 4, M1, PSA was 31, Gleason 9. I messed with Zyflamend for prostate, way less money. Currently I'm on Lupron and Xtandi. Lupron alone for 2.5 years, Xtandi added at that point for the last 3.5 years. So I'm 0.02 PSA, ; 3 mets resolved, coupla suspicious lymph nodes down to normal. I avoid meat with hormones. Can't complain.
nor would I if I were you Kevin. I only lasted about 3 months on just Lupron after doing Chemo (Taxotere) early in Stage 4 diagnosis. I was quickly (3 months) labeled Castrate Resistant... and got to add the bonus curse of Xtandi. Even that's not getting me low enough PSA wise...which is why I am trying some other "out there" herbal things....LOL.
after Chemo...my results looked so good...that even a second opinion had said I should be able to coast for a few years....well, alas, I got a few months before PSA and scans went in wrong directions...HMMM.
kinda staying stable now...so I don't want to rock the boat,
You can't argue with success. If it's working for you by all means continue on. It's seems kinda expensive but if you can afford it , and it helps , no argument.
I avoided "bad" stuff for breakfast and for lunch(almost) ...and by the time I was finished with lunch I felt like I was going to vomit. Too much healthy doesn't agree with me.
"almost" at lunch was a greek salad with tomatoes, cucumbers, lettuce with sesame oil and vinegar...with a spoonful of (here's the no no) Feta cheese.
I have settled into a eating healthy most of the time (which isn't all that bad since I enjoy salads and fish) routine with an occasional indulgent ice cream or BBQ once a month or so. Gotta live a little brother! Otherwise, no dairy, eggs, alcohol, or red meat for me. It sounds austere, but I have gotten used to it. Last night I made salmon piccata with peas (and a little butter) on the side and bread with olive oil. Yum! Today, a lovely spring day in Maine (life is indeed beautiful), portobello bruschetta, salad, virgin bloody mary, and coffee for brunch. Yum again!
All the best to you greatjohn and I hope you continue to do well and find some balance and joy with with your culinary pursuits.
If I hadn't gone to the oncologist on Friday...I was in such a good mood and full of energy...the minute she said "you can't get scratches"...I deflated. I don't like feeling like a "boy in a bubble". I was supposed to wear the masks when in public during chemo..I wore one once. I hated how it made everyone look at me (and how it felt to breath through it)...I survived without it!
So many conflicting messages 😳 I am not one to dispute an MD Anderson doc, but would at least suggest grass fed with no hormones or antibiotics added if you can.
oh, she didn't say anything about diet...they never have at my doctors. It's what I read on here about everyone being vegan and not drinking milk or eating cheese or anything fried....I eat like a normal (trying to lean towards healthy person).... She made me worried by saying "I can't" get scratched...I guess from fear of infection. I thought I was more "normal" than that. I guess the best thing to listen to .....is your inner self. I definitely LOVE quality of life....so well see how long I can keep it going!
Your feelings are understood, GJ, and I don’t judge a mood slump caused by news of PSA creep. It’s the worst. That being said, you need to trust how you feel, period. The rest is numbers and war strategy only.
Our cancer is us - it wasn’t created by Twinkies or tiaramisu or a grilled filet mignon... although sugary foods and red meat certainly are proven to have association with many poor health outcomes. We should remember that that the basic cancer model is Initiation, Promotion, Progression.... where Initiation can come in the form of a viral infection with later Promotion to cancer via chemical insult (diet or otherwise)... or vice versa, or maybe it’s a viral/DNA combo, or chemical/DNA combo, or a combination of all factors.
Diet is for health - for help in balancing those body systems put into deliberate disequilibrium; systems that don’t need extra stress by trying to process poor quality and high calorie foods. Additionally, it is suspected that fat acts as a hormonal reservoir....something we don’t need!
I completely agree that we need to adopt new and changing diets to help our bodies fight PCa....but if we don’t think that cancer cells can take energy from spinach and salmon, we are fooling ourselves. It’s not as if those cells simply wait for us to eat a Snickers bar to say, “A-ha! You’ve made your last mistake....!”....
Emotional stress and despair is just as much of a killer. Go to Minnesota, have some poutine and a ferris wheel ride, get nauseous, and long for the spinach salad and salmon and wild rice pilaf.... it’ll be fine for now.
So what’s with the whole “Boy in the Bubble” bit? Is Xtandi an immunosuppressant, or....?
It is "LOL"....but it is also very true. I would feel isolated and alone without this forum. Doctors are amazing people, but they are usually not the best nurturers and seem to feel they need to say something "valuable" in terms of warnings or admonitions. It makes me feel small when, in fact, I know the most about my condition.
Great reply! I'm going to picture my cancer hiding around the corner, waiting to jump out and say "A-ha" when I go to the fridge.
I've been thinking the cancer sees nutrient levels in your blood, which is only indirectly related to what you eat. Sugar in your morning coffee before breakfast won't have the same effect on blood glucose as sugar in a dessert after a big dinner.
There is no chance you should miss your road trip. You just need to plan ahead to get blood work every few weeks. No shortage of locations that do blood work anywhere you might go I would think. In our society of emails and phones it should be no problem to keep in touch with your doctors and review your blood test results. If something goes wrong then you head home. But it won’t. Don’t forget the reason we put ourselves thru all of this. It’s to enjoy our lives and follow our dreams. I urge you to find a way (a relatively safe way) to take your planned trip. Eat mostly healthy but treat yourself to some special things. By the way, what treatment are you on that makes a scratch so dangerous ? Is it the xandi? Does it affect your immune system ?
Well that's a bummer, but perhaps the next scans will continue to improve the picture - all the best with that. But, in terms of BIRM, certainly it helps my husband's energy level and that's a big plus when on the ADT drugs. New integrative doctor last week indicated good bloodtest outcomes under the circumstances (but he doesnt have blood PSA test because not PCa, they just do full blood analysis). So he takes currently BIRM, whole body Zyflammend, milk thistle, curcumin, mebendazole, wild yeast rice, berberine, propolis and green tea extract ( alternating the latter 2 every 3 weeks with honokiol and mcp). Have recently added in quercetin plus C. D3 too for around a year. Hard keeping up supplies as many online sources are not from Australia. Anyway, new integrative MD recommended methylated B complex supplement, upping zinc foods to bring copper levels down, adding liver 1x per week for iron (his is low), spraying magnesium 1x day on joints; she reinforced the value of MCP and started him on Metagenics Super Mushroom Complex (beta glucans). Also prescribed meds for under active thyroid (clinically evident for over a year but onco and general practitioner have not deemed intervention necessary thus far). Whew, quite a list.
We are planning to visit Europe in May for 4 weeks. Meds and supps will continue, but off the leash a little bit dietwise. We plan optimistically for holidays too - what good is sitting alone in a room...etc.
But aren't fermented dairy foods (sulforaphanes) in moderation ok? (feta)
Thanks. I just read "dairy" ...I'll check it out. We were doing almond milk for years, but then I looked at nutrition of it and milk(fat free lactaid) and milk looked so much better that a couple of years ago we switched back to milk for cereal, etc.
Good luck & enjoy your trip...last summer we did England, Scotland and Ireland for almost a month. It was great.
Hi John, We are planning a road trip to Minnesota from Georgia this summer as well. Not sure if the medical necessities of my husband will allow it but I am proceeding with the planning which is most of the fun. He did fine on the six week trip to Florida that included a prostate cancer conference and visiting his wonderful, previous doctor who is an MO as well as an RO to discuss the recent Axumin scan and treatment plan.
As far as the state fair, been there, done that, and have no desire. Similar to my feelings about Disney World. Guess you have to experience it once as the people watching is crazy. I am Minnesota native and preferred the county fairs.
You might think about getting into Mayo Clinic and see Dr. Kwon or see Dr.Charles Ryan at University of Minnesota for their opinions.
I say while we all want to walk this planet as long as we can we also need to have a fun and great life. Being a Minnesota native I would highly recommend going to the state fair and enjoying all the food as it’s a gastronomical delight.
On the blood test most clinics can do the test so take the trip.
thanks, Just got to see if my insurance will do it...I'm with Labcorb for my blood work...so since they are everywhere...I'm pretty sure that might work!
I wish I was a Minnesota Native....I've be at Mayo Clinic! I might TRY? to get a referral for a second opinion from them if I can. I got a second opinion one year ago for the Moffit Cancer Center in Tampa....it's about time for another one.
It's only fair that you go to the fair. Next time tell that doctor that you got those scratches from the new exhibit at Disney World where visitors can fight a black bear over one of those turkey legs. And you won.
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