Need help with Lupron question

[MBOY1]

As some of you know I’m Gleason 3+4. Will have TURP in August and then 28 sessions of proton therapy starting in November.

My close friend was diagnosed 4+3 shortly after. He’s being told by 3 oncologists (IMRT/proton) that it would be best to do 4 months of Lupron plus the radiation. Other testing has confirmed neeed for this. He’s freaked, as I would be, about the Lupron side effects.

Can anyone give specifics from recent experiences with Lupron?

Another question. If given choice would you go with an oncologist more experienced with IMRT vs one less experienced with proton?

Thanks..

[MBOY1]

Thanks for quick reply. I’ll discuss with my buddy. In California Protons in San Diego they use the ballon in recruiting like they do at Loma Linda. I am familiar with space oar too. What was your Gleason?

[jamessorenson]

Awinnegar1,

Here is an excellent short course on the Biology of Cancer. It is for beginners and it is free. My Gleason scores were similar to yours 8 years ago. I had the 7 weeks of radiation and two years of Lupron (plus Casodex). My PSA dropped to undetectable for about two years, and then starting creeping up to 1.8. Started back on the Lupron 4 years ago. PSA is stable at 0.2 for past years. Bottom line is when the PSA goes up, the Cancer starts spreading in spite of the Lupron. Prognosis at that point is "Bad". Sure, the Lupron effects your libido and gives you hot flashes, but metastatic disease is "so" much worse. Just my 2 cents worth.

[jamessorenson]

Sorry, here is the web site for the course coursera.org/learn/cancer/h...

[jamessorenson]

MBOY1 - I had Gleason scores similar 8 years ago. I had the 7 weeks of radiation plus 2 years of Lupron. The PSA dropped to 0.00. They stopped the Lupron and the PSA crept back up to 1.8 within 2 years. I've been back on the Lupron for about 4 years. I've been told, the cancer cells eventually grow in spite of the Lupron. When this happens, the PSA keeps going up the cancer spreads. Bad News! Based on this, the side effects of Lupron don't mean much considering it is giving you more years to enjoy life. Here is a good free course on the Biology of Cancer for beginners from Johns Hopkins University: coursera.org/learn/cancer/h...

[MBOY1]

Thanks. For me, and after extensive research I concluded all treatment options would yield similar ten year numbers thus I was focused on side effects largely. Although I have an excellent and experienced IMRT doc in my local western town, I have chosen to do proton beam in San Diego later this year. The incredible experience of my oncologist there played heavily in my decision which is partially why I asked men about their thoughts about the docs. Thanks.

[Hidden]

Mboy1 sounds like the best option for you best wishes!

[JusD]

I have been on lupon since August there are only 2 things that have changed sex drive gone and I am a little more emotional and yes I did get hot flashes for 2-3 weeks . No other side effects

Good luck

[Victorq1]

I had suffered very unpleasant side-effect of Nilutamide

after years of intermittent ADT with Lupron and Bicalutamide (Casodex).

Here is my experience :

I have been switched to Nilutamide (Nilandron), from Bicalutamide (Casodex) , plus Lupron,

for the same reasoning of my Oncologist,as well and after about two and half month of taking it, caused me Pneumonitis.

It was diagnosed, unfortunately, as bacterial ,non specific Pneumonia

and I almost died. I was loaded with many antibiotics,was on Oxygen

for 2 months,was given Corticosteroids and

Nilutamide was withdrawn. Than finally I was getting better after loosing 20 Kg (about 44 pounds ) in 2 months.

I am professional Chemist,

so later I was researching ,what was going on. One of Nilutamide rare side effects, in about 2-4 % of patients may cause "Interstitial Pneumonitis",

pneumonia like condition. It is described in the medical literature, but you have to specifically look for it.

None of my attending physicians was aware of it !

Here is one of the links:

Nilutamide, Pneumonitis

and report on eight patients:

thorax.bmj.com/content/thor...

Both Bicalutamide and Nilutamide affect liver functions, even Bicalutamide was reported that it may rarely cause Pneumonitis :

Int J Clin Oncol. 2011 Dec;16(6):763-5. doi: 10.1007/s10147-011-0239-x. Epub 2011 May 3.

Interstitial pneumonitis induced by bicalutamide given for prostate cancer.

Masago T1, Watanabe T, Nemoto R, Motoda K.

I continue on Lupron or alternatives eg: Eligard --

My PSA has risen from 1 to 5.7 , in two years.

I also started Ketogenic diet, on advice of my other physician.

I am no longer taking Nilutamide or Bicalutamide , have appointments with specialists to see what will be the alternative.

Would like to have your comments or experience.

Good luck MBOY1 with your treatment,

there is Proton Therapy also in Prague, Czech Republic

to compare.