The Game Plan: Oct. 3 Urologist puts in... - Advanced Prostate...

Advanced Prostate Cancer

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The Game Plan

BB_1 profile image
BB_1
29 Replies

Oct. 3 Urologist puts in markers in my prostate and gel spacer with the University of Oklahoma Cancer Center.

Oct. -date TBD- Bone scan/Pest scan to rule out that the cancer has not spread outside the prostate.

Oct. -date TBD- MRI- needed before Proton treatments

Oct/Nov.- dates TBD- 5 Proton radiation treatments

Nov - Lupron shot- still in discussion . They wanted 6 months and I did not want more than 3 months. We may comprise, start with a two month Lupron shot and evaluate. If need be, one more two month Lupron shot.

I am a Medicare patient for what it is worth.

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BB_1 profile image
BB_1
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29 Replies
michael1776 profile image
michael1776

I got my treatment at Stephenson, my oncologist waited to see the results of the scans before doing anything surgical. The scan results will drive your treatment plan.

My cancer was: Gleason 4+4; T3c. Cancer involving seminal vesical, nerve bundle and one lymph node. I opted for radiation and ADT. I am currently 15 months into my treatment.

My advice is wait for you scans to be completed and interpreted before locking in a plan.

Also, when you start ADT, this is a standard part of treatment, demand the 3 month shot, it has been reported 6 month shots don't last 6 months.

Finally do your own research, ask your doctor every questions you have and don't allow any doctor push a treatment on you that doesn't make sense to you.

BB_1 profile image
BB_1 in reply tomichael1776

My docs at Stephenson are Stratton( urologist) and Gunter( radiologist). On the shot I will do a two month with a follow up and if need be another 2 month shot-Lupron vs there two three month shots. Still discussing. Thank you.

michael1776 profile image
michael1776 in reply toBB_1

Those are my doctors as well and I am sure you have met Halston and Paige as well. Anyway, I have heard no two men have the same experience with this cancer. I had and still do have confidence with this team and all I can offer is my path to where I am now.

It was suggested to me, I need to have a medical oncologist review my case and and offer his suggestion for treatment. I saw Kevin Courtney at UT Southwestern in Dallas, I liked him very much and he was very thorough. He said I should begin ADT; Lupron, Abiraterone and Prednisone two months before beginning 39 weeks of IMRT. This was one of four options offered by Stratton and that is the plan I chose. Stratton told me, the clinic has a MO I could have used. In hind sight I do no regret taking my case out side of Stephenson and if you are able I would suggest the same.

BB_1 profile image
BB_1 in reply tomichael1776

thank u...

joeguy profile image
joeguy in reply tomichael1776

I just met with Dr Courtney at UT Southwestern a couple weeks ago, and I also like him. He will be my oncologist for the SPLASH trial using LU177 in Dallas. Its a 4 hour drive to Dallas from Ft Gibson Lake, but they are offering treatment that just isnt available in Oklahoma.

VCinTx profile image
VCinTx in reply tomichael1776

Six month shots of Lupron kept my PSA at undetectable for full six months. I was on Lupron for 18 months.

michael1776 profile image
michael1776 in reply toVCinTx

I imagine you are on ADT as well. If so, that is also suppressing your PSA. It may look like Lupron is still working and it may be however it may not be. This is what I have read.

VCinTx profile image
VCinTx in reply tomichael1776

I have stopped Lupron and I now am on Testosterone to fix my QOL. I still have an undetectable PSA.

BB_1 profile image
BB_1

Not stage 4. Both Docs want Proton. They wanted to give me two three month shots but wanted a two month to see what happens, and if need be another 2 month shot. I will ask why Proton over IMRT?

in reply toBB_1

Thank God , you’re not #4 .! You can be cured!

Follow your own path to heal yourself? Stay strong!

maley2711 profile image
maley2711 in reply toBB_1

where will the proton be done??? Theory says proton would cause fewer SEs, but no conclusive evidence so far. Cure results have been very similar.

BB_1 profile image
BB_1 in reply tomaley2711

Proton radiation to be done at the University of Oklahoma in late October and early November.

ShipModeler profile image
ShipModeler

I live in Kansas City. Your path to treatment sounds identical to mine. I was diagnosed with Gleason 8; mets to pelvic lymph nodes. Once the Urologist inserted the markers and gel spacer in preparation for SBRT I was given a 3- month LUPRON injection than waited two months for the radiation treatments to begin. When I questioned the delay I was told the Lupron was a significant part of the treatment. I am now one year post radiation. PSA has been .04 for the past nine months. I too am on Medicare. It has been excellent throughout this process.

Currumpaw profile image
Currumpaw

Hey BB_1!

Several years ago, I messaged several times with Dr. Gary Larson. I found him to be honest and knowledgeable. Dr. Larson left a good impression. Proton therapy isn't that widely available--or wasn't at the time I messaged with Dr. Larson.

It seems that you are in an area where some of the most experienced docs are that perform proton therapy.

I didn't have proton therapy. I wanted to learn about it and if I needed farther treatment, it could be a possibility.

A link with some info that you may find useful. Copy the entire script to place in your search bar.

__________________________________________________________________

Dr. Gary Larson Radiation Oncology. Oklahoma City OK

doctor.webmd.com/doctor/gar......

_________________________________________________________________

My best to you,

Currumpaw

BB_1 profile image
BB_1 in reply toCurrumpaw

thank u

Lrv44221 profile image
Lrv44221

Hello BB-1

My husband has been on ADT therapy for 5 years, He takes a Lupron shot every 3 months. Abiraterone, and Prednisone daily. However, he also takes the nutritional therapy I have him on.

I believe the combination of both is helping him very much.

For you, I would suggest you do research in all areas, not just in here, because everyone is different. What works for one may not work for others.

He is quite fatigued and has lost his hair from the Lupron, But I feel it has been a lifesaver.

I hope you can read and learn and then decide what is best for you with the help of your healthcare practitioners.

Keep Positive🌹🌹🌹

LRV

frankie08033 profile image
frankie08033 in reply toLrv44221

Hello LRV

Can you elaborate on your nutritional therapy.

Lrv44221 profile image
Lrv44221 in reply tofrankie08033

Yes I can elaborate on what I give my husband

He takes so many supplements that modulate the immine system. I say modulate because you do not want to rev it up or slow it down depending on, a person's needs

Two nutrients that I believe, as a nutritionist, that a diseased body need is

Vit d3, 4000 IU daily

Extra strength Beta Glucans...........I use NSC as I believe they are the best. I would like to know more of your food intake, exercise, sleep ,drugs, meds etc.,' I do not sell any nutrients, nor do I charge anyone for my nutritional advice.

I also appreciate reading🌹🦚 what others talk about.

frankie08033 profile image
frankie08033 in reply toLrv44221

Thank you for the reply. I'll get back to you this weekend with more info.

All the best,

frankie08033

Lrv44221 profile image
Lrv44221 in reply tofrankie08033

Sound wonderful🌹🌹 thank you

BB_1 profile image
BB_1 in reply toLrv44221

thank u

fzpinc1 profile image
fzpinc1

For what it's worth:

I've been on/off Lupron for almost 5 years. I get the shots quarterly. Biopsy - post surgery - showed that the cancer was already present in tissue adjacent to the now ex-prostate. We did radiation therapy 30+ sessions and then went to Lupron. It was very successful in keeping my PSA # LOW. I went off Lupron for almost 9 months and returned when my PSA neared 2.0. I stopped again (the chronic fatigue and the hot flashes be damned) when my PSA plummeted to less than zero. My last 3 PSA's (9 months sans Lupron) were <0.01 (my urologist called this essentially undetectable). Incidentally, the side effects of Lupron seem to take at least 6 months to dissipate. So there is lingering fatigue and hot flashes. I have found that a good program of resistance (weight) training helps a great deal with the chronic fatigue. Even the makers of the drug advise this. I advise you to do it. Force yourself to get up and go to the gym and do it. Itis so worth it; now I get tired from working out. I intend to return to Lupron once my PSA reaches 1.0 (this is a common practice - I'm told - in treatments in France. Understand that the cancer is still in your body waiting to feed. It loves active cells; hence the Lupron to suppress your bodies productions of testosterone (the cancer loves it). I understand that the cancer is only "most likely" to metastasize in the lungs and bones. It's a good thing if the cancer is not there (lungs & bones), but it does NOT mean that you are cancer free. I live a life of balancing the facts that medicine has and can give me at the time. There are new developments almost daily in fighting this cancer. Do your best to beat it back. Good luck.

BB_1 profile image
BB_1 in reply tofzpinc1

Thank you

Lrv44221 profile image
Lrv44221 in reply tofzpinc1

Thank You a great reply, I am the wife of a Pc man and also a nutritionist.

And I believe you are so right. I need to exercise more........my sadness is so emotional🌹 but physicaly moving my body will help thank you so much🌹🦚

ElizabethMedora profile image
ElizabethMedora

From all the research my husband and I did -- also for cancer that has not spread beyond the prostate -- 6 months on Lupron was the minimum to have any effect on nailing potentially microscopic cancer cells. But depends on your Gleason score and other factors: They increased my husband's course of Lupron to 18 months after a second read of his pathology bumped him from an 8 to a 9. :-( He was also very resistant, but ultimately did the smart thing and just went through the whole course. They also added Xtiga as a precaution. Was it easy? Not really. Was it fun? No, but manageable. Does it inrease his liklihood of non-recurrence? Yes. Each person has their own decision to make, but from what we've researched, a super-short course isn't going to do all that much on inhibiting senescent cancer cells. But it goes by fast, and you have to think big picture on this. Hope our experience provides another consideration for you!

BB_1 profile image
BB_1 in reply toElizabethMedora

Thank you

Lrv44221 profile image
Lrv44221 in reply toElizabethMedora

🌹👍

Jbooml profile image
Jbooml

this month marks my 4 year survival anniversary. If you check my history i had progressed to full blown Mets at Dx. Ive never deviated from my advanced ADT treatment in this time and have remained undetectable. I’m amazed at others success coming on and off treatment but hold to the adage if it ain’t broke don’t fix it. I’m lucky despite the SE burdens which have lessened over the years to cognitive indifference. It is what it’s become..a new normal of a benign future swallowing a retreating past.

BB_1 profile image
BB_1

Congrats! Onward!

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