Update on recent consult with MSK doc... - Advanced Prostate...

Advanced Prostate Cancer

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Update on recent consult with MSK docs , comments , suggestions welcome

PBnative profile image
13 Replies

In my recent consult with doctors at MSK in NY the doctors said they may still be able to “cure” my PCa . They said I will probably need radiation and 18 months of ADT plus Xytiga.I recently had a clean bone scan and a PSMA- PET showing no mets .It did show SVI but I’m still not sure if it is extra- capsular. I’m getting an MRI to determine what sort of radiation is possible ie; can I have brachytherapy with supplemental external beam radiation or does the position or size of the tumor rule that out ? I think I am high risk due to PSA 61 three months back . PSA yesterday is 45 .I was afraid the PSA was going to be even higher because I stopped taking Dutasteride a month ago.I also tried some estrogen cream for about a week before my MSK consult.I take supplements to slow cancer growth suggested by a naturopath based on monthly blood tests . That may have an effect.I am not sure what’s going on with my PSA but I’d rather have the PSA go down 25% in 3 months than have it go up.

MSK docs haven’t asked for a new biopsy. My Gleason 3+ 3 is from my only biopsy in 2009 .They asked me to get a stress test since Xytiga has heart related side effects. I have hyper tension and border line type 2 diabetes .

Any comments or suggestions are welcome . thanks , Farlow

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PBnative
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13 Replies

Great for you that drs at MSK said they can cure you. Was that a URO at MSK or a MO/RO? I had different experiences at MSK though but I am happy for you.

PBnative profile image
PBnative in reply toStayingOptimistic

I met with a URO and an RO initially . Going back 10/14 to see an MO. It’s all new to me . Hoping that the MO can answer concerns I have about ADT .

tango65 profile image
tango65

IMHO, I would discuss radiation to the prostate plus whole pelvis radiation and a brachytherapy boost plus 2 years of ADT plus Zytiga.

You could also discuss using Eplerenone to try to control the blood pressure and the increase in aldosterone caused by Zytiga. Eplerenone alone could be enough to avoid the hypertension, hypokalemia and edema caused by Zytiga and it may avoid the use of prednisone which sometimes may be problematic in patients with type 2 diabetes.

PBnative profile image
PBnative in reply totango65

Thanks for these very helpful suggestions . I had a TIA approx. 10 years ago ., only symptom was my cheek went numb on the tennis court as if I’d had novocaine. I scored 930 on a recent Calcium Test so I’ve lowered my LDL and triglycerides with diet and medications , but I don’t think cholesterol is as important as the cardiologist thinks it is . My naturopath checks lipoprotein a and homocysteine with monthly blood tests and suggests supplements. All his suggestions come from human or animal studies . My homocysteine remains high . He says all animal products raise it and suggested a vegan diet , which I have not followed . I lost 60 lbs on Dr Atkins diet when I quit alcohol in 1977 and have been on and off low carb / high protein ever since.

My blood pressure is still level one hypertension. The supplements seem to be doing something since my PSA is down to 45 from 61 2 months ago .

maley2711 profile image
maley2711 in reply toPBnative

per my understanding, PSA>20 considered high risk.

Tall_Allen profile image
Tall_Allen

Hi Farlow:

(1) Your fluctuating PSA is a sign that you have some prostatitis or that you are masking PSA with the witches brew of supplements you are taking. You are incorrect supposing that masking PSA is beneficial.

(2) You have some of the best doctors in the world at MSK. It is hard to see why you would compromise your therapy by taking the advice of a naturopath or other shaman.

(3) You will require whole pelvic radiation in addition to ADT and Zytiga.

prostatecancer.news/2021/08...

prostatecancer.news/2021/06...

(note that the AASUR trial was done at MSK by Sean McBride)

(4) The boost to the prostate and seminal vesicles can be done with HDR brachytherapy or SBRT (whichever you and the expert ROs there prefer).

(5) Do not compromise your therapy by taking anything unprescribed. Many supplements and radical diets interfere with radiation. Exercise!

EchoII profile image
EchoII in reply toTall_Allen

A lot of “other shamans” out there. One has written a 506 page book on “Alternative Non-Toxic Treatments…” for PC. A friend of mine, desperate for “silver bullet” for his cancer, has bought in hook, line, and sinker.

Boywonder56 profile image
Boywonder56

Oh no ta....knocking the shaman...git ready for a shitstorm...🥺

podsart profile image
podsart

May I ask who the RO is as well as who is the MO you will be meeting with at Sloan?

PBnative profile image
PBnative in reply topodsart

Sorry slow replying . Seeing both MO Dr Jason Koutcher and RO Dr Jeremy Setton Thursday morning .

podsart profile image
podsart in reply toPBnative

Thanks

Good luck re mtg

KAgolf profile image
KAgolf

just a little info. that goes with what Tall_Allen mentionedMy husband has a very aggressive form of Pca, is High-Risk, GL9, grade 5 stage IVA, T2b, N1, M0 with only 3-4 suspicious pelvic nodes which were treated as positive.

He started ADT right away, then after a few setbacks from other things, had 8 weeks of Proton which targeted prostate and all of pelvic region for 5 (?) weeks, then all nodes+prostate for 2 weeks , then 1 week just prostate (boost).

He is also on Zytiga + prednisone now, and that has given him more energy, believe it or not! (we were not convinced he should take it since he doesn't meet the FDA approved criteria, but sage advice from several of the men here convinced him to try it)

In August it was too early for scans (according to RO) to really tell how much it has helped, but MO insisted on bone & Chest & abdominal/pelvic scans as well as brain MRI about 6 weeks after proton ended.

Bone scan still clear, chest still clear, abdomen/pelvic says they can't see those suspicious nodes any more (YES!) and a mesenteric node he had biopsied is now 1/2 original size.

His PSA continues to drop, albeit, slowly but never was very high (10.43) compared to a lot of the men here. His T is slowly dropping also--will be very interesting to see if Zytiga has made a difference in PSA and T levels when he gets his next bloodwork done in November.

That was a LONG intro. to get to my point---before his proton therapy started he was instructed to STOP most supplements for a couple of weeks (I think) before proton started and not to resume taking them for 2-3 weeks AFTER treatments ended. Some supplements fight what the radiation is trying to do. He said anti-oxidants see the inflammation from radiation as a bad thing and try to stop it, so it would be prudent to not take supplements when you have treatment--also, they "could" make your situation seem less than it is when you're being evaluated prior to treatment.

NOW about the brain MRI--as one of our friends said to Jeff, there's good news and bad news: the good news? There's nothing there. The bad news? There's nothing there! ha!ha! just a little humor from Georgia.

Best of luck to you and everyone else on this forum--you have all been a God send for me.

PBnative profile image
PBnative in reply toKAgolf

Thanks for the heads up about supplements . I’ll definitely check with the RO about what I’m taking

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