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Prostate Cancer Round 2, Observations, Questions re: Lupron

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Posted 4/16/2018 1:11 AM (GMT 0)
Hello Everyone,

This site was recommended to me by some fellows who knew about y'all. I am the FNG - Funny New Guy. smile

I'm on my second round with prostate cancer. Here is some history, and I'm seeking guidance on Lupron or some other therapy...

Found out June 2017 that my PSA was up to 2.0. This was not good news as my prostate was removed via DaVinci Robotics system April 2011 roughly 2 weeks before COBRA health insurance plan expired. Last 2 months of Cobra was $950/mo!

Rockstar DaVinci surgeon (so I thought) said ""we got it all"! During the recent review of "his" work i noticed he was not listed as the OPERATOR of the DaVinci unit. I'm sure he assisted with direction...

Cancer Free until - June 2017 - 6 years clean, then the dirty PSA. Search of the InterWebs revealed that most reports say you have a 30% chance of recurrence of prostate cancer.

Lucky Me... smile

Some thoughts on treatment:

At this time it has occurred to me - Keep your prostate as long as you can. Now that mine is gone, there isn't a really good way to biopsy the missing prostate. The DaVinci surgeon told me that radiation weakens tissue so that stitches would not hold well... So I went for the surgery. Cancer ratings were gleason 8 and 7 in 4 sectors, below that in the remaining 8 sectors.

I have been told that prostate cancer likes to encapsulate and isn't very prone to spread. I also understand that this may change based on the aggressive nature of the particular cancer in the host.

If I still had my prostate, it would narrow the scope/target area. Right now I am undergoing Radilolgy Oncology treatment. They are just irradiating the prostate bed. Compare that target against a comprehensive report based on 12 biopsies of the 3D prostate with the corresponding Gleason ratings of the tissue pin pointing the cancerous tissue and most aggressive areas. You can understand how targeting the cancer would be significantly more precise with the radiation systems in use today.

Thursdays are "Doctor Days" and we sit and talk with the Dr about how we feel. We will call this Dr Nuke, as he is the nuclear physicist. We talk about any elimination issues, mental state, energy levels... and such. Last Thursday Doc asks about libido, elimination, ect, and ...

LUPRON

My urologist is a *nice* young man, in his first year of practice. He graduated from Stanford Medical with Honors. He talks to me about Lupron, but it may not be covered by insurance. I'm cool with him forgetting about it... this was back in November 2017.

Now I'm being told by Dr. Nuke that I *really* need to be on Lupron for TWO TO THREE YEARS as part of this "therapy"...

Now - I love me some medical science. Have one stent, and only one stent cause I changed my diet radically based on emerging medical science and this has GREATLY reduced my need for supportive meds like statins, beta and alpha channel blockers... NOT A BIG FAN OF ADDITIVE MEDS... there, I said it. Okay, perhaps some alcohol is good... (LOL) My combined cholesterol is around 130 so I'm kinda out of the kill zone per say.

Back to the prostate situation - LUPRON - Looks pretty damaging based on the few posts that are on other forums. It may save my life, but will it simultaneously ruin my life???

I write reports based on analysis performed during rather fast paced interviews with clients on WebEx meetings where I am also the scribe for the interview session. Active listening skills required, strong cognitive skills for the report analysis and generation...

I remember how *whacked* I was on the blood meds, can't imagine how it works with your Testosterone blocked! I lose my job, and we are pretty much *DONE*. I have no retirement after being wiped out in 2009...

So... if there are any prostate cancer and Lupron therapy stories I would love to hear some feedback!

Thanks in advance for any advice you might have on this wonderful topic!

IN the mean time, I'm digging through your posts, learning the acronyms and all... soaking it in like a sponge.

Wish I had known about this forum back in 2011... but Life Goes on, and We Beat Cancer!!!
smile
Posted 4/16/2018 2:13 AM (GMT 0)
Sorry to hear of the recurrence. If you haven't yet, review the sticky notes at the top of the forum. Also, there is a fairly decent search utility for this forum, and you will surely find a lot of posts on these topics.

Your questions are rather broad and unfocused so it's hard to know how to respond. Do you have some specific concerns or questions?

Lupron isn't fun, but people live with it. It's also quite expensive.

If you're in a recurrence situation, I wouldn't be comfortable with a 1st year urologist. This is a non-trivial situation and you want an experienced team. Just a thought...
Posted 4/16/2018 2:38 AM (GMT 0)
Biggest concern is around the Lupron. I have watched my wife struggle through menopause and HRT.

Loss of memory, depression, anxiety, lack of focus, and cholesterol control are my big concerns especially with a couple heart attacks in my past.

Expense and determination of Health Plan coverage of Lupron will be the next step I should tackle. Currently doctors are talking about a pill or capsule regimen which will make it easier to get a handle on how it affects me. And stop if if it just doesn't work for me.

I'll keep digging into the posts for some additional information.

I appreciate the feedback Redwing57!
Posted 4/16/2018 2:49 AM (GMT 0)
Pierre go over to the ADT and SRT journey thread for lots of stories and experiences and advice in these two areas. As Redwing said you need to kinda clarify a few things such as have you had any scans or mri's before starting SRT, more definition of your post path report (margins? seminal vessels? etc) what's your age? I believe medicare will pay for Lupron? If you are getting IMRT treatments right now you should be consulting with an RO maybe that's who you mean by DR. Nuke? Having a weekly meeting with your Oncologist is pretty standard what puzzles me is why the RO didn't start ADT before Radiation but is talking about it now? Come back and tell us more about yourself and there are some very knowledgeable guys that will probably chime in later and offer some thoughts on your best course

Larry
Posted 4/16/2018 11:11 AM (GMT 0)
ADT, which includes drugs like Lupron, eligard, firmagon, etc. all work by reducing testosterone to starve the cancer and put it in remission. The side effects come from the low-no T. I was on for about 40 months. I adapted to the side effects and they weren’t too bad. I did not miss any work or have any problems doing my work which requires my brain at a high level. Looking back, the worst side effect ended up being some weight gain.

There are many coping methods including diet, exercise and stress reduction. Our resident rock star Todd1963 has been on continuous ADT for more than 12 years and lives a fuller life than anyone on the forum.

ADT is always covered by insurance, don’t worry about that. Of course you can always call the company to enquirer. Among the last people I would listen to about insurance would be an inexperienced doctor.

You are correct that you should take a studied approach with SRT. But it should be considered. What scans have you had to try to identify where the cancer might be? At PSA of 2.0 scans will help. If there is cancer found outside the radiation field, then no radiation and straight to ADT.
Posted 4/16/2018 12:01 PM (GMT 0)
Bon jour, Pierre. Pleased to meet you. smile

Luprolides (ADT) jam up your hypothalamus which is hard - wired to your pituitary gland, so that gets shut right down and quits producing any of the chemicals it normally makes. When it stops making gonadotropin - releasing hormone the testes quit producing testosterone. While many of us think that the lack of testosterone is the main factor in the "side effects", it is not. It is just one of several major chemicals that regulate a ton of body functions. Consider prolactin. While we used to think that only turned the milk supply on and off in females, it turns out that it also regulates how much water your kidneys leave in your blood, your base metabolic rate and the quantity and viscosity of your mucous membranes - including the mucous in your lungs. The water thing causes you to retain more water and thus to gain some 'water weight'. The lack of human growth hormone makes it very difficult to gain muscle, easy to gain fat and stops the production of neural stem cells by the hyppocampus, thus causing mild cognitive impairment.

Many of the side effects of Luprolide chemo can be moderated with diet, exercise and mindfulness meditation (As described on the front page of Healing Well). If you are on Luprolide chemo for a long time, some of the 'side effects' become permanent and remain after you are taken off the chems.

What this means though, is that you can still have a high quality of life, but you will need to take measures to insure that. The chems can slow the cancer's progression - sometimes for a very long time - the payment for that is the side effects. Those can be dealt with. In my humble opinion (and that is not popular) it is better to know what you face and not be surprised by it than to blindly go into treatment and get whacked by the 'side effects'.

The other item that was mentioned is the bit below what I have just written here. That is my 'signature', it contains the facts of my PCa case thus far. You put it together in your profile and click the box when you make a post so it shows your info.
Posted 4/16/2018 3:01 PM (GMT 0)
Gentlemen, Thank You!

I feel like I'm drinking from a Fire Hose right now... Thought I knew something about PC, and y'all have Raised The Bar.

I'm working on my signature updates now, need to pull some records to provide additional info.

I appreciate your time - I'll open my mind and find out what insurance will do for me.

I'll definitely be sharing this forum with some of the folks I see in treatment.

The straight forward info is great. I did not think to take notepad and get notes or record the Doctors...

The support is greatly appreciated!

It's going to be a Great Day!

Post Edited (Pierre!) : 4/16/2018 9:04:33 AM (GMT-6)

Posted 4/16/2018 4:03 PM (GMT 0)
I did two years of ADT along with radiation when my post-operative pathology after surgery came back much more worrisome than expected. I call the trio of surgery plus radiation plus ADT a three-scoop sh:t sandwich and I have to admit that I found the ADT to be the most flavorful ingredient.

One way of looking at ADT along with your radiation is that it is a bit like plea bargaining. The radiation is your lawyer. Without him you are sunk but even with his best efforts you only have something like a fifty-fifty chance of beating the rap, and if you lose you're looking at a life sentence (permanent ADT). You can improve your odds of avoiding the life sentence by plea bargaining -- pleading guilty to a lesser crime and doing two, maybe three years of ADT. Hard time, to be sure, but not a life sentence. I took the plea bargain when it was offered to me.

Previous posters have offered you good advice on how to deal with ADT -- staying active, getting plenty of exercise, watching your diet, developing whatever sort of spooky super powers Todd uses to have more fun than the rest of us put together, despite over a decade of ADT. All good strategies to be sure. I'd like to offer one more, something that worked for me, the solace of complaint. ADT sucks but you don't have to feel alone. We're here to listen to you. The members here were very patient with me during my two years of ADT and we'll be glad to keep you company during the long months ahead.

For reference, here's one of my posts from when I was more or less where you are now:

Hormone Therapy, the Pod Person and the Plan
Posted 4/16/2018 4:21 PM (GMT 0)
Lupron sucks, but most of us seem to power through it. But I'm a bit confused on where things are for you...you're currently having salvage radiation, but they haven't put you on Lupron yet? Typically, you would have Lupron prior to starting the radiation. For most guys the initial round of Lupron knocks your PSA down to about zero.

Hang in there and I hope we can help...
Posted 4/16/2018 5:30 PM (GMT 0)
What Michael said - you probably should have started Lupron (or similar) a few months before radiation, this is pretty much the salvage standard. My MD Anderson radiation oncologist refused to nuke me without the Lupron protocol.
Posted 4/17/2018 2:26 PM (GMT 0)
Pierre-
I am sorry you find yourself in Round 2, but clearly you have a fighting chance for a clean knockout.

Regarding ADT by Lupron, I offer the following comments:

(1) focus on the fact that it is not forever in your case and recovery from ADT may come along with cure

(2) I can say that I have been able to function quite well in lectures to college students on cell biology and pathophysiology, and I have been on Lupron since May 2016 (and will be so likely for the rest of my days)- I believe if you actively use your mind during the therapy, you help maintain mental tone- is my memory less effective? yes, but often I feel like I am giving the best lectures of my life these days-- like the muscles, use it or lose it more quickly when on ADT; So keep pushing yourself mentally each day.

(3) it is my opinion that testosterone is involved in skin oil secretions- on ADT, my skin is very dry- you may want watch for that and treat accordingly- my skin is not dry anymore since going on my latest therapy, which involves cyclic administration of super high levels of testosterone while on a background of Lupron (bipolar androgen therapy)

(4) Lastly, I have not seen complaints about insurance not covering Lupron- since medicare covers it, most insurance companies do too- but if you must pay, arrange to get the shot in your URO office for the cost of drug and office visit- rather then getting it in the hospital chemo infusion center where they tack on a facility fee that leads to total charge ~3K$ where I get the shot.

good luck
rf
Posted 4/17/2018 2:46 PM (GMT 0)
Really good responses!

Although ADT is nothing to chuckle about, the following did make me smile:

I call the trio of surgery plus radiation plus ADT a three-scoop sh:t sandwich and I have to admit that I found the ADT to be the most flavorful ingredient.

Thanks Peter!
Posted 4/18/2018 3:15 PM (GMT 0)
Hello ! We could use some more details....Are you getting salvage radiation now ? What were your original stats before and after the surgery ? PSA, Gleason score ? Your URO's job is over. Better check in with a Medical Oncologist . If money is a problem, there are various pathways that can help with that...You don't have to bankrupt yourself to get treatment...
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