Radiation / ADT

[sharpcut]

I had RALP at MSK on 8/16/18 MY Pretreatment PSA was 6.23 ng/ml

Post Surgery Gleason Primary 3 Secondary 4 Total Gleason 7. Grade Group 2

Clinical Stage. T 1 C NO MX Tumor Type Adenocarcinoma Primary Tumor pT2 Organ confined Perineural Invasion identified No Lymph Node or Seminal Vessel metastasis

Post Surgery PSA was 9/18/19. PSA .07 ng/ml 10/21/19 PSA .08 ng/ml

12/5/19. PSA. .10. ng/ml...1/16/20. PSA. .12 ng/ml.

Met MSK MO. Morris

He said Do the Radiation and ADT ! best chance of getting it early !

Met MSK RO. Borys R. Mychalczak

Getting Total Body MRI scan 1/31/20. checking for any Mets. if clean

ADT (6months). Begin Lupron Shot 22.5 ?(whatever that means). and Casodex 50 mg.

Begin Radiation 6-8 weeks after at Westchester close to Home

He wants to radiate Pelvic Lymph Nodes Prostate Bed

8 Weeks of radiation ! I wonder if there is a shorter duration ? Not sure what other questions I should ask ? Very concerned about collateral damage to bladder and rectum

I run about 4 miles a day and try to lift weights everyday as well. Hope to keep going

5 days ago I began the CareOncology Protocol

100mg Doxycycline 500mg Metaformin 40 mg Atorvastatin 111 mg Mebendazole

No more liquid stools My stools immediately firmed up !!

Hoping I can stay on Protocol for at least 2 months to see if it lowers my PSA

Plant Based Diet. with Modified Citris Pectin 5 g 3 x day Turmeric (stop during radiation) Vit D 2000IU NAC 1000 mg (stop during radiation)

This forum has been my most important access to questions and answers for my disease and treatment. Thank You to all my brothers. You keep me going in a positive direction !!

Keith

[vforvendetta]

Westchester probably doesn't offer hypofractionated radiation therapy for prostate cancer, but you can ask.

My father had it done at University of Michigan Rogel Cancer Center for 5 days a week for 4 weeks. I think he was highly grateful that he chose this option over the local county hospital cancer center which only offered 8 week RT for PCa.

cancer.org/latest-news/new-...

[sharpcut in reply to vforvendetta]

Thanks vforvendetta. I will ask

[GP24]

You probably do not need ADT with salvage radiation. A very recent study concludes that low risk patients do not need that.

"Based on these findings, Dr. Spratt said he believes clinical guidelines for treating men with recurrent prostate cancer should be reconsidered. “For post-operative patients with low PSAs, they do very well with just radiation therapy after surgery. They actually have very good long-term outcomes. Patients with high PSAs, over 1.5 ng/mL, should continue to receive long-term hormone therapy in addition to radiation."

ascopost.com/news/september...

astro.org/News-and-Publicat...

[sharpcut in reply to GP24]

GP24. sorry forgot to reply. well I am so grateful for your post !! Thank You. I am not sure what to do because. Their advice is hit this insidious disease with the kitchen sink while it is still a small monster. And then I see studies that show it doesn't really increase survival time and may even increase morbidity !! ?? Oh boy this is a tough decision !!

What inspires me is that you and most men on this site who have more pressing concerns battling prostate cancer take the time to help me navigate my way

THANK YOU GP24 and all my brothers

[GP24 in reply to sharpcut]

You should print out the articles and take them along next time you see the doctor. I think he should say: its up to you.

In your case the study even reports that ADT will shorten survival. Well its all just statistics, but I think it is an clear indication, that ADT will not improve things. Citing from the article:

"The researchers therefore further analyzed data for a subset of patients with PSA levels less than or equal to 0.6 ng/mL (n=389), closer to today’s standard for post-surgical radiation treatment, and found that this group was twice as likely to die from causes other than cancer when hormone therapy was added, with the greatest risk of death (sHR 4.14 [1.57-10.89]) for those with the lowest PSA levels (0.2-0.3 ng/mL, n=148)."

[sharpcut in reply to GP24]

GP24,

Yes great advice !! Thank you I will email him I am sure he has seen them but my guess is he will say,"the evidence is inconclusive". My MO. Morris has already has recommended the ADT with radiation He says it makes radiation more effective Wonder what some of the other veterans here think.?? The side effects of radiation are enough to give one pause !

[GP24 in reply to sharpcut]

The results of the study I cited were presented at the 2019 ASTRO Annual Meeting in September 15 - 18, 2019. So it is understandable if your MO has not read that yet.

[rscic in reply to sharpcut]

I think these studies are all 5 year studies. So they cover the re-occurrence within 5 years, which is the most likely re-occurrence time period. However, these studies so far do not cover the 5 to 10 year period where a significant number of Prostate cancers do re-occur (as I recall the number is about 50% of the 1st 5 years). So while the 5 year studies are encouraging they do not cover the 5-10 year period. My MO (Dr Vogelzang) is a nationally known researcher and told me whether or not to have or forgo Radiation post-prostatectomy is controversial with some forgoing radiation and others not. Insurance still pays for it and would not if forgoing radiation were the standard of care. The idea to "....hit this insidious disease with the kitchen sink while it is still a small monster." has validity as a greater cancer load is harder to hold at bay vs a lower load in a stage 4 patient. I was Gleason 3 + 4, negative lymph nodes, negative seminal vesicle invasion with 2 small areas of extra-Prostatic extension as well as 2 small areas of positive margins. No metastasis found. I finished Radiation (8 wks total) about Oct 15, 2019 (surgery May 15, 2019) and noticed more tiredness & increased sleep especially near the end of the treatment. I did not receive ADT. My MO said ADT in my cancer profile was controversial and his feeling was it was not necessary. My MO said he would not consider any further treatment unless my PSA reached 0.1 (last PSA was 0.05, next PSA Jan. 31). I am an athlete and trained for an IRONMAN Triathlon (2.4 mi swim + 112 mi bike + 26.2 mi run = 140.6 total miles) during RT which I completed in Cozemel, Mexico near the end of November. I am 68 & retired. So while there is some tiredness with RT one can do a lot during RT.

[sharpcut in reply to rscic]

Hey rscic

Thank you. You rock ! I am so grateful that you shared your story Triathlon during RT ! Gives me lots of hope that I can still be very active ! Did you do RT in Mexico or just the Triathlon ? You had radiation because PSA rose after surgery or pre emptive strike ? Do you know the type of radiation and dosage. No Urinary or Bowel issues ?

Thank You. for taking the time. keith

[rscic in reply to sharpcut]

RT in Henderson, NV where I live. The Triathlon was in Mexico.

My MO said most people who are employed work during RT.

RT to pelvis & Bilat iliac regions.

Adjuvant RT (pre-emptive strike) beginning about 90 days aft. surgery. As I previously said some advocate waiting for a rising PSA & others advocate a pre-emptive strike. I am told there are good researchers on either side of this argument. Sorry no reference but was told by my MO who is a known researcher in the Prostate Cancer Field.

RO said they wanted good bladder control before RT as what you have when you start RT is where you will likely end up---slower, if any, improvement in bladder control could be expected aft RT.

Also I was told by my MO that there is a study out there which said those who start RT within 90 days of surgery do better (from a recurrence perspective) than those who start much later .... my impression is there was only 1x study. Sorry I do not have a reference.

No radiation urinary or bowel issues. I did notice stool was a little looser but not diarrhea and have been told this will go away with time and is.

RO liked the idea I was training during RT as he said he was a big believer of those who had a purpose had fewer RT complications ..... obviously just his say-so.

With your PSA numbers it is doubtful they will find anything on scans. I am told even PSMA Scans (which in the USA are "experimental") are not likely to show anything with your PSA numbers even though they are more sensitive than any current conventional scans.

BTW MO said many authorities felt most pre-surgical distant metastasis were from seminal vesicle invasion as the seminal vesicles are very vascular. So NOT having seminal vesicle invasion is a GOOD thing.

Let me know if my experience of 1 can be helpful to you in any way.

Rick

[sharpcut in reply to rscic]

Thank You. rscic I am hoping I do not have to go through ADT after reading some recent studies gp24 sent me ! Although I might research the genomic test that helps determine if it will even help me. Hoping to see how MNFarmboy orders this test ?

Will post after more research. appreciate your help. Keith

[rscic in reply to sharpcut]

Thanks for future posting aft more research as this helps all of us.

Is the ADT temporary & only during RT?? If so remember it is only 2 mo.

ADT + RT (I did NOT/have NOT, have/had ADT) might make you more tired than RT alone .... others can speak better to this. I do know someone who did an IRONMAN while on ADT.

My experience with RT alone is I had to get more sleep and paid close attention to this. My philosophy was too much sleep was not a problem but too little was.

I do like the idea of genomic testing and posting on how to get this done will be helpful for at least some in this group.

BTW I did have some mild reduction (but still in the normal range) in WBC levels during RT.

Remember, your main goal is to beat this and that goal should be kept in mind with all decisions.

Rick

[sharpcut in reply to rscic]

Thanks Rick. RO was suggesting ADT for 6 months ! Yes goal is to get it beaten back before it gains momentum !

[Hidden]

I would had a PSMA PET/CT before starting sRT.

[sharpcut in reply to Hidden]

Hi Justfor

Asked Dr Morris who is heading the Clinical Study at MSK for PMSA and he said it most likely will not show up. PSA is too low to qualify. must be .2

[Hidden in reply to sharpcut]

Please read this:

ncbi.nlm.nih.gov/pubmed/284...

I have used the therein cited coefficients to compile an excel that renders individualized probabilities regarding a positive detection. I did this for my personal use in case need arises in the future.

I gave it a run with data taken from 2 or 3 posters and their individualized probabilities, that is for a positive detection, were somewhere 40-60%. (you can search my earlier posts). Needless to note that they were unable to convince their doctors. They all got some kind of response like yours. I can do it for you also, but fear that in the end it will be a waste of time.

Your Dr Morris has been somewhat more honest that some of his colleagues. Added, "low to qualify". This means that you will have to bear the cost all by yourself, as you can not enter any sponsored environment. Cost is the main reason for the evolution of this "magic number" (0.2). It is a convenient round number at the vicinity of a very grossly averaged 50-50 probability point. Other doctors do not admit that openly to their patients, because, if they did, then the dilemma of an educated (in the sense of informed) patient would had been:

a) If I fall into the "not show" side of things I will lose my money and will receive some extra radiation, which will be negligible compared to that of the impending RT.

b) If I fall into the "show" side there is some substantial probability (30-50% figures have been published) spanning all the width from the necessity for minor-to-major revision of the RT planning, to the understanding that RT will do nothing, as the source has been located outside the intended target area.

Tricks of the trade.

[sharpcut in reply to Hidden]

justfor.

thanks for taking the time. excuse my lack of understanding I am lost completely Can you try me again ?? thank you. keith

[Hidden in reply to sharpcut]

Now, it's I that lost you. Can you please make a bit more clear what am I expected to do?

[leach234]

Isn’t the oat used when you still have your prostate and decide on radiation instead of surgery.

[timotur]

22.5 mg is the 3-month Lupron depot in the butt.

[sharpcut in reply to timotur]

Thank you timotur

[Ramp7]

My surgeon is now at MSK, Dr Vincent Laudone. He performed Robotically assisted prostatectomy at Hartford Hospital over 12 years ago. PSA after surgery went to undetectable but a year later PSA slowly went up to 0.10. Radiation therapy was employed without ADT due to PSA being still very low. I went for thirty something visits. Was still employed at the time. After a couple of weeks my energy level was effected. I found myself usually taking 15 minute naps in the afternoon to refocus on the day. Over all tolerated very well and the effects lasted for over 10 years. PSA recently spiked and was given a Firmagon shot 4 weeks ago and now this week Lupron (3 month shot).

I noticed you have employed CareOncology. Just finished Jane McLelland's "How to Starve Cancer". Quit fascinating approach to this affliction. Would like very much your feedback on CareOnclogy.

Sounds like you are on the right path.

[sharpcut in reply to Ramp7]

Hi Ram7. Thank You for that journey share. Maybe I will not do ADT. Waiting to see what responses are posted. Your journey seems to be successful I hope this latest setback is only temporary !! As far as COC protocol only started 1/18 Will let you know what my next PSA reading is in a month but may take longer to have an effect if it has one at all. As I mentioned the 100mg of Doxycycline firmed up my loose stools

[MNFarmBoy]

SharpCut, did genomic testing figure into the decision whether or not to use ADT in conjunction with SRT? I have not seen that aspect mentioned so far in the replies to your posting, so I will bring it up. Fortunately not having faced that decision yet, but I am on the lookout for information that might help if I do. The plan that I am following includes genomic testing in the event of post-RP increase above the limit of detection, to help judge whether ADT would be beneficial in addition to salvage RT. The idea would be, if there appears to be no potential benefit from ADT, consider avoiding the side-effects of ADT. Thankfully, so far (most recent PSA test was 10.5 months post-RP), I have not faced that decision, so I don't know, upon being advised that there would be low but significant probability that ADT might be beneficial, whether I would forego ADT, or whether I would undergo ADT anyway, in the hope of maximizing the probability of a benefit in longevity, albeit at the expense of poorer quality of life.

The urologist who performed the RARP for me recommended not performing genomic testing until "just in time", i.e., not until the results could affect decisions regarding treatment, so as to potentially benefit from increases in knowledge from additional accumulation of data and analysis of outcomes vs. traits in the genomic databases. He favors early SRT, (certainly by PSA of 0.2 but trending toward earlier); however, I don't know at what PSA level he would advise pulling the trigger on genomic testing and selection of RT technique and facility.

In response to a reply similar to this, another member indicated that the doctor he was apparently relying on for this type of decision does not have much faith in genomic testing for the ADT decision, however, in that case the member indicated that in his genomic testing results "My ADT Response was graded as Average, but my RT Response was graded as Low", and that he intended to include ADT along with SRT. I believe that with those results, I would probably make that same decision. (healthunlocked.com/prostate...

Best wishes!

[sharpcut in reply to MNFarmBoy]

MNFarmBoy ,

Thank You Had not considered Genomic Testing. Wow I have to research this ! My RO is a very busy guy and my guess is he would say not worth the cost But I take everything he says with a grain of salt I trust him and the other Dr's at MSK but I also try to cross reference.everything if I can and this site and people like you have been invaluable. Thank You.

[MNFarmBoy in reply to sharpcut]

Actually, I see that the link from PG24 above contains a reference to a study that includes investigating whether genomic testing can indicate whether ADT would be beneficial in conjunction with ART or early SRT. As of 2020-01-23:

URL for study: clinicaltrials.gov/ct2/show...

From the study description:

Title:

"BIOMARKER TRIAL of APALUTAMIDE and RADIATION for RECURRENT PROSTATE CANCER (BALANCE)"

PRIMARY OBJECTIVES:

I. To determine whether, in men with post-prostatectomy PSA recurrences, salvage radiation (SRT) with enhanced anti-androgen therapy with apalutamide will improve biochemical progression-free survival (bPFS) compared to SRT alone.

SECONDARY OBJECTIVES:

I. To assess whether molecular stratification by the PAM50 gene expression clustering will identify subsets of prostate cancer (luminal A or basal, luminal B) which derive the greatest benefit from anti-androgen therapy.

...

Inclusion Criteria:

(as selected by MNFarmBoy to include in this reply)

*Pathologically (histologically) proven diagnosis of prostate adenocarcinoma; prostatectomy must have been performed within 10 years prior to Step 1 registration and any type of radical prostatectomy is permitted, including retropubic, perineal, laparoscopic or robotically assisted

*Post-prostatectomy patients with a detectable serum PSA (≥ 0.1, but ≤ 1.0 ng/mL) at study entry (within 90 days of Step 1 registration) and at least one of the following:

*Gleason score 7-10

or

*International Society of Urological Pathology [ISUP] grade group 2 to 5

*>= T3a disease

*Persistent elevation of PSA after prostatectomy measured within 90 days after surgery (PSA never became undetectable) of > 0.04 but < 0.2 ng/mL (PSA nadir)

*pN0 or pNx

*Surgical formalin-fixed paraffin-embedded (FFPE) specimen must be available for submission to GenomeDx for genomic analysis on Decipher GRID platform; Note: if Decipher results have already been obtained, in lieu of tissue, results must be submitted to GenomeDx for validation

...

Recruitment Status :Recruiting

Estimated Primary Completion Date :February 16, 2024

Thank you, GP24, for leading us to the above info!

[Hidden in reply to MNFarmBoy]

I am in the same lane as you are, only 2-3 months at your follow. I learned from this list about the color.com genomic test, the cost was reasonable and took it. Thankfully, it didn't show any cancerous mutation, only the familial high cholesterol gene that I was aware of, in practice, from some 35yrs back.

[sharpcut in reply to MNFarmBoy]

MNFarmBoy Hey tried to order test at color. but they were not helpful I guess I would need to know what I am looking for from them. any idea ?

thank you. Keith

[sharpcut]

Hi Nalakrats Want to thank you for a previous post on MCP. As well as other posts I am following your advice at 5 g 3x on empty stomach ! I see MSK is studying MCP. As far the OAR Apparently because my prostate was removed The OAR can not be used (no expert on this though).

[sharpcut]

Nalakrats. what if you don't have a prostate ?

[MNFarmBoy]

SharpCut, the reference to a genomic test by "color.com" is from "JustFor" above, not from me; I don't know anything else about it. If you were to query him explicitly, he might be able to provide additional information.

If genetic testing is done for my case, I believe that will be ordered and arranged by one of the doctors, probably the urologist, but maybe a radiation oncologist.

[sharpcut in reply to MNFarmBoy]

thank you