Advanced Prostate Cancer

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After 3 weeks on the "BIRM"...STILL FEELING GREAT, but my PSA has bumped up from 0.88 to 1.130

well...I got my first PSA back after using BIRM for just 3 weeks...and feeling MUCH better and more energetic the whole time. But, ALAS, my PSA wasn't feeling the "BIRM" yet...LOL. It actually went UP...from 0.88 (six weeks ago) to 1.130 this time.

I told my oncologist about starting BIRM at my appointment where the blood was drawn...and she said "let's see what happens". I plan to stay on BIRM for the next 6 weeks and see how the PSA goes. If it's not lower, I will lower my dosage of BIRM and see how low I can go and still get the effects of pain reduction and energy increase. (I'm on Lupron and Xtandi)...and before BIRM I was already talking with them about lowering my dosage as I was feeling so weak and tired and in so much leg and feet pain.

The sense of well-being I've been having had me ready for a really low PSA....but my latest Axumin Pet Scan was really good...so I hope I'm still heading the right direction.

~~John

p.s. keep hoping that the "uptick" in PSA may be from cancer cells dying. It had gone up slightly (like this) when I had my Pet Scan done...and the results were "greatly improved" as I said. Has anyone ever had this happen with PSA?

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RalphieJr644 years ago

John thanks for posting and filling us in on your progress. I just hope it keeps working for you. I'm also praying that that PSA will do an about face and start sliding downward again. I see my Oncologist and Urologist tomorrow. I just want some quality that you fortunately are getting now.

God Bless,

Ralph

greatjohn in reply to RalphieJr644 years ago

I truly feel blessed for feeling so good. Now when people ask me how I feel...I really don't have to lie ...when I say "Great". I wish the same for you!

Big hugs,

John

johnscats in reply to greatjohn4 years ago

want to try what your doing with birm need the 7 times strenghth stuff where can you get it i live in ireland best of luck j

greatjohn in reply to johnscats4 years ago

I have the phone number and website to order the 7X....but I am feeling so good just using the regular and I am using a bit more than basic dose. I use apps 4 mls. in a little glass of water...3 times a day after eating. (I think it actually calls for 2 mls. after each meal...

If my PSA goes down on the next test...I might consider upping the dosage...but for now ...I feel very good (physically & emotionally) on this amount.

If my PSA goes up more...I might have to consider NOT taking it anymore. It's a wait and see thing right now.

all the best,

John

greatjohn4 years ago

Maybe! One will never know. I also eat so much lettuce and carrots and cucumbers and onions and cabbage and tomatoes...that I feel like a vegetarian some days....LOL. I seem to have to eat a lot to keep up my weight...and I love to eat...EVERYTHING...even my "ungodly gourmet" meals...so I am staying constant. I was just at the market planning a meal of just a little chicken breast with roasted potatoes and carrots and mixed vegetables. So it's NOT all "ungodly" eating that I am doing. Have a great weekend!

gusgold4 years ago

GJ,

I just read a study where combining ADT with Zytiga or Xtandi can cause the cancer to change to an aggressive form that is lethal. So there are no easy answers. If your PSA continues to rise and the Axumin scan shows progression you might want to drop the Xtandi. BIRM gives more energy but IMO doesn't do jack shit to stop the progression of PCa

greatjohn in reply to gusgold4 years ago

thanks Gus,

well...I concur(so far) about the BIRM....but at this point the extra energy, strength and sense of well-being is a major PLUS! If my PSA doesn't start back down(my last score of 0.88 was the LOWEST my PSA has ever been, by the way)...so I am still very low for what I have been averaging at 1.13~~~I will adjust my dosage down to see if I stay energetic on a little less. It's rather costly. I'd guess it's about 150.00 per month at the rate I am using for me...but for how I am feeling....well, it does seem worth it.

**After starting Xtandi I have been gradually going down every test...with only one other bump up like this...where it came back down very quickly. I was told by the oncologist before starting Xtandi or doing Provenge that it appears that my Prostate cancer IS aggressive. I'm also hoping the Provenge kicks in too and starts helping.

John

cesanon in reply to gusgold4 years ago

"study where combining ADT with Zytiga or Xtandi"

That sounds alarming. Is that just one study or more than one?

gusgold in reply to cesanon4 years ago

I came across it when researching BAT...it must be what happens when ADT + Xtandi fails

Raymonda100 in reply to gusgold4 years ago

"The STAMPEDE clinical trial of nearly 2,000 men shows that adding Zytiga to a standard initial treatment regimen for high-risk, advanced prostate cancer lowers the relative risk of death by 37%. The 3-year survival rate was 76% with standard therapy alone vs 83% with standard therapy plus Zytiga. This is the largest study of Zytiga as first-line therapy for advanced prostate cancer." Given these findings, I find it hard to believe that this treatment causes the cancer to change to an aggressive form that is lethal. I would appreciate a citation for the study you read.

gusgold in reply to Raymonda1004 years ago

you are looking short term...what happens to the mutated AR when zytiga fails...all these drugs eventually fail and lead to real aggressive PCa

Raymonda100 in reply to gusgold4 years ago

How are you defining short term? My husband is 75 and with extensive mets and 83 percent surviving to three years sounds good. Maybe for men in their 50's or 60's, long-term use (how defined?) is of more concern.....? Also, isn't it possible that the drugs are failing because the PCa is already aggressive.

gusgold in reply to Raymonda1004 years ago

No, the AR mutates because of the drugs..if you are only looking at short term survival then you are right....I want long term survival

Dalph874 years ago

My father's PSA on Lupron and Zytiga goes up and down every month (one month slightly up, the month after slightly down, this process keeps repeating itself...), lowest PSA he had was 1.98, highest was 3.3, the PSA is usually around 2 or so and it's 7 months he's taking Zytiga. Our MO says it works well for him and the slight PSA bounces are normal, as long as the PSA doesn't keep increasing month after month, the drug is still considered effective.

EDIT: The bounces are usually from the cancer cells dying and releasing PSA, it's what our MO said.

Best wishes, John. Let us know how it goes for you.

greatjohn in reply to Dalph874 years ago

Thanks so much for your input. That is what I am hoping this is. My latest pet scan was very good.

All the best to you and your father

John

jdm34 years ago

Stay positive brother. It sounds like you are doing really well with a relatively low PSA. The results do fluctuate so unless you have more time to establish a trend, let's just assume everything is doing what it's supposed to.👍

greatjohn4 years ago

Thanks for the encouraging words!

Captsquid2u4 years ago

I’ve always wondered if the PSA count includes dead cancer cells, anybody know any facts about this?

greatjohn in reply to Captsquid2u4 years ago

I keep doing searches on the internet regarding this and I keep getting conflicting answers that are not really answers...because no one will commit to either yes or no. I guess it's good to have the hope that this is the case...

my PSA did go up slightly right before my last Axumin pet scan and it came back with what the doctor called "VERY GOOD" results...all of mets in abdomen had disappeared and all the mets in pelvis area had shrunk considerably. And then the next PSA after that was lower.

So I am hoping that this "bump up" means that more cancer cells are dying and the next PSA will be lower again. HOPE SPRINGS ETERNAL! LIFE IS BEAUTIFUL.

~John

Captsquid2u in reply to greatjohn4 years ago

Hope so for you! Want to try Birm, the only thing that keeps me active is Vicodin and I don’t want to become dependent on an opioid. Idk why they can’t figure out if dead cancer cells cause the psa levels to rise. Think they know but they don’t like to give their secrets away!

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After 3 weeks on the "BIRM"...STILL FEELING GREAT, but my PSA has bumped up from 0.88 to 1.130

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