Cancer Free 13 Months - Wish to Stop ... - Prostate Cancer N...

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Cancer Free 13 Months - Wish to Stop Lupron This October (Will Be 2Years)

JorgeGMiamiBeach
JorgeGMiamiBeach

Hello. I have had a Prostatectomy in 2018, 10 doses of Radiation and 6 doses of Chemo in 2019. I've been cancer free since October 2019 and I wish to stop my quarterly Lupron shots this October. My Dr suggests I continue taking Lupron for the rest of my life. I do not want to continue after being cancer free for two years. Any thoughts on why I need to take Lupron for the rest of my life.

39 Replies

You would not have had chemo unless metastases had been detected, right? If that is the case, you are only "cancer-free" because you are taking Lupron. It is doing a great job of keeping your cancer in check. Why unleash the beast now?

depotdoug
depotdoug in reply to Tall_Allen

Love the analogy. Beast of our cancer. Yeh I/we know not when the beast will strike again and again. I’m worried about my Renal Cyst on R Upper kidney lobe. No it has not been detected as cancer. Yet. Just a Cyst but growing a bit bigger each CT i get.

Reason for stopping? Side Effects...$$$$.... QoL.... Sick of being a chick?!!!! I'm far from an expert but many stop (myself include) and see what happens! If PSA climbs... maybe your Dr is right. I have fired many Dr's that insisted they were right... mostly the old school ones. Cancer free??? My guy just says "there's no sign of active cancer right now" of which I accept with open arms and suspicion!!!

But this is my opinion / experience only. Wait for the smart people to reply!!!

Jc

What are your last 3 PSA test results? What is your T level?What is your age?

What is your pathology post RP? TNM notation please.

All PSA levels have been undetectable (<0.014) since October 2019.

Do know your post RP pathology?

4+4 Gleason

That's your gleason score.Your pathology would be something like this

pT3bN1M0

Don't know it.

You'll need that info before making a decision. If it ends with M1 then I would not stop the ADT. You are metastatic and that means incurable. It would be very risky to stop. But everyone needs to take responsibility for their medical decisions so if you determine the risk is worth the reward great. Go for. Just be prepared if the situation goes south on you.

Thank you. I will find the report and confirm.

Just found it. pT4 N1 M not applicable

Did you have a bone scan and CT scan before your RP?

Yes I did

Were they both negative?And did you have radiation to the whole pelvic area?

Spot Radiation only to my right hip area.

The Impression Said:1) Bilateral lung Nodules

2) Bilateral Hilar Adenopathy

3) Left Adrenal Nodularity

When I had my final Pet Scan it said all clear and no lesions anywhere.

If you haven't had IMRT to the prostate bed and pelvic area you should not be taking an ADT vacation. You have great control right now. Why mess with success? You are probably M1b. Listen to your doctor on this one.

I appreciate your sound advice, thank you.

I was just going to comment that the smart ones will want more details about you!!!

You are correct in saying that my cancer was aggressive. Additional to Lupron I have been taking many organic supplements as well as repurposed cancer fighting medications through Care Oncology. I believe that I was successful in eradicating my stage 4 metastasized cancer by combining Chemo, Radiation with Care Oncology, a lot of holistic supplements and a weekly dose of high dose vitamin C via IV. I still take all my supplements and I continue taking my Care Oncology repurposed meds. I understand what you are stating, but Lupron really has uncomfortable side effects and I do not know what to do because the side effects really are substantial. Thank you for you advice.

I have read here a couple of posters, LearnAll is a nick I remember, that have downgraded ADT to Bicalutamide (Casodex) plus Avodart. You can check this out.

Once you stop your PSA might start rising. At that point you may not be able to go back on Lupon.

I would stay on Lupon until your PSA starts to rise. May it won't, but two years as not enough time.

London441
London441 in reply to Magnus1964

Mangus why would he not be able to go back on Lupron if his PSA starts rising?

Magnus1964
Magnus1964 in reply to London441

It is possible that lupron might have stopped working. That's not definite but a possibility. He could at that point go on a different ADT drug.

Jorge: I'm sure the folks here recommending that you do not "unleash the beast" are correct. I'm also sure (because I've been there myself) that there are people who are no miserable on ADT that life is no longer worth living; there are people who commit suicide because of the pounding and relentless depression. If you've done everything possible to mitigate the SEs and you still honestly can't stand it, you'll need to find an alternative solution. E.g., you can look into high-dose transdermal estradiol or BAT.

Thank you for such honest and direct advice. Greatly appreciated.

depotdoug
depotdoug in reply to Horse12888

Prednisone 5mg twice daily. I'm extremely energized and yes miserable with my Pred SE's. Yes, energy from a drug. I'm trying to think of prednisone as a plus, a good SE med, the better than the alternative of no energy med.Is there a negative side effect of Pred? Trying not to go there.

All steroids have negative effects too. I suggest you look into Care Oncology. They are a UK group also working in LA that have helped me tremendously with repurposed meds. Good luck

All steroids have negative effects too. I suggest you look into Care Oncology. They are a UK group also working in LA that have helped me tremendously with repurposed meds. Good luck

N1 means Node Positive. Staging was 4 - although 'at the lower level.

I went on an ADT holiday after being on Lupron for about 16 months and being undetectable for over 1 year.

I was originally T3b - N1 ...

I wanted to know if i was cancer FREE or needed to stay on / cycle or do whatever ADT was / will be needed to continue my fight against this disease I was advised NOT to stop ADT - but I did anyways.

My cancer has returned, but it took over 2 years to show up again - as rising PSA.

I have done the next bunch of scans - ALL came back clear - but the PSMA/PET c=scan coming up soon will be the one that hopefully shows where the recurrence has occurred.

It might be in the Pelvic region AGAIN - where it 'escaped' into - in the first place.

I'm NOT sure what comes next, but some form od=f ADT will be on the list - at least in the short term - unless they can treat the BCR and maybe I can TRY again going without ADT.

IF you look at the statistics, you are likely ti=o have a BCR in the range of between 30 - 50% - circumstantial - but significant.

Do not despair, but be aware of where you sit and where you might go in the bigger picture.

Tere is enough time to consider several options - but consultation and access with / to a qualified MO is something you need to have at your disposal.

Wishing you the best on your journey .....

Ronny I wish to share with you the holistic and supplements that I took in conjunction with my chemo and radiation. I truly believe that I was able to eradicate my PC because of the combination of chemo, radiation and supplements I took. I have never stopped taking my supplements and I know tat my PSA has remained undetectable because of these pills. Please let me know how to send you the list, fax or email. I wish you my best.

I will 'private' you for an email to reach me - THANKS for reaching out. (I clicked on YOUR name / alias - that gets me to U ...)

Email just sent with attachment. All my best

Would love the list also for my husband! Can I message you too?

Please send me your email address and I’ll send you my list.

Jorge: I stopped taking Lupron last July after 2 years and still gets PSAof 0.014I have been “stabilized” . cured” as they say, not until after 5 years of no rise in the PSA.

Thank you for your reply. I will continue taking Lupron as I don't want to risk any regression of the beast. Thank you again and I wish you good health.

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