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Posted 5/23/2017 7:21 AM (GMT -5)
I cancelled my next Lupron injection that was scheduled for tomorrow - these SE's really suck!

Started on Lupron 8/2016 and finished SRT 12/2016 - I've had five different MD's give me five different answers on how long to remain on HT.

I'm taking the bull by the horns and stopping HT to see what the SRT did.

If RT failed I'll be back on it soon enough.

Has anyone used a Medical Oncologist that specialized in Prostate Cancer on South Florida's East Coast? Please provide their name.

I have one MO I have met with, but he does all types of cancer.

Bobby Mac
Posted 5/23/2017 1:55 PM (GMT -5)
I've heard of Rakesh Singal at U.of Miami, but I haven't heard from any patients about him.

I'm sorry the Lupron is driving you crazy, the ADT you've had is likely not enough with your N1 disease. There are no breaks - you'd only be selecting for resistant strains. You can't "see what the SRT did" and then get another try. Lupron isn't getting your T level very low, so it may be a good idea to try something different anyway. The side effect profile may be better with Firmagon, or with Casodex (and Tamoxifen). No one can give you a definitive answer on how long because there is no definitive data, but at least a year or more is probably a good idea. You did so much good work in getting an excellent SRT protocol, it seems a shame to give up now.
Posted 5/23/2017 2:29 PM (GMT -5)
Try to continue with Casodex (and Tamoxifen) - it should have less side effects. Radiation works better in combination with ADT and you should try to make SRT very effective since you cannot get a second SRT if there is a recurrence.

The usual recommendation is two to three years. However, I would also try to get close to a year if possible. Then I myself would declare the break a holiday of an intermittend ADT.

George
Posted 5/23/2017 3:14 PM (GMT -5)
Bobby Mac, We have very similar profiles except I am a couple of years ahead of you and had N0 rather than N1 (but only had 1 node analysed).

I had 12 months HT adjuvant with RT and that then gave me a 2 year vacation. I am lucky in that I don't find HT too difficult to handle, but was still grateful for the 2 year vacation.

I also had a Ga 68 PSMA scan which didn't find bone mets or live nodes but showed + bed, so no cure.

With a fast rising PSA, I am now back on HT, only 6 weeks in and managing OK.

Obviously I can't know just how unpleasant the HT has been for you, but based purely on my experience I would urge you to consider trying at least 12 months HT to give it a real chance.

While the SE's may suck, I suspect that losing your <.01 will suck even more, and you may find you get a very short, if any, vacation.

All the best, Chas
Posted 5/23/2017 3:33 PM (GMT -5)

Chask said...
I also had a Ga 68 PSMA scan which didn't find bone mets or live nodes but showed + bed, so no cure.


I would try to treat the recurrence with SBRT or brachytherapy: Salvage SBRT for local recurrence after first-line (primary) radiation therapy

George
Posted 5/23/2017 4:10 PM (GMT -5)
George, my primary treatment was Laprascopic Radical Prostatectomy. EBRT was adjuvant. So no prostate for Brachytherapy and not suitable for additional RT without risking damage to other organs.

Thanks anyway.

Chas
Posted 5/23/2017 4:41 PM (GMT -5)
Bobby Mac,

Which side effect bother you most? Some of them can be mitigated with additional treatment.

You can count me in your tally of those who think it would be a pity to quit your ADT this early. You can switch to a different HT drug if you want. The Lupron isn't quite doing what you want it too so a different drug makes sense anyway. And since your PSA is doing so well despite the Lupron's so-so control of your T level, something seems to be working. It'd be a pity to come so close and miss the brass ring.
Posted 5/23/2017 5:59 PM (GMT -5)
Peter DA makes a good point. It would seem that most people in the US are on Luprin for their ADT. Purely anecdotally the majority of people I know in Australia are on Zoladex.

On this forum it does seem that many people on Luprin complain strongly about the SE's. I know it's a very small sample and it might be quite coincidental, but the 2 or 3 people I know here in Oz have not found Zoladex to be too bad. I know I am only 6 weeks in, but I don't really have any issues. Yes libido is gone and I am having plenty of hot flushes, but that is about it. Still feel reasonably strong, though the weights I use for light weight training do seem to be getting heavier, haven't gained weight, but am watching that very closely and I don't feel fuzzy headed, and not experiencing fatigue. All this mirrors fairly closely my experience during my previous 12 months on Zoladex - but did gain weight last time, which is why I am watching that this time.

So Bobby Mac, maybe a change of product could help. Possibly a long shot, but maybe worth a try.

Chas
Posted 5/23/2017 8:13 PM (GMT -5)
Bobby Mac,
I just bought a second home down in Lake Worth, and plan to spend winters down there starting this December. I'm from NY, and am not in BCR as far as I know, but because I'm a crazy person, I started searching around for someone that I could go to if I had a problem. I figure, if I need SRT I'd rather do it in Florida, if I could get good care. 🙄

So I found that there are 4 NCCN Medical Centers in the state. The closest one to southeast Florida is University of Miami Sylvester Comprehensive Cancer Center. I saw in your profile you are in Lake WORTH, and Sylvester has a facility in Deerfield Beach, about half an hour from lake Worth, but way closer than Miami.

Here's a link to a fact sheet on the Deerfield Beech facility. On the second page there is a list of Drs at that facility by specialty. In the prostate, bladder, kidney cancers the list of Drs includes the one that Tall Allen mentioned...

sylvester.org/documents/sylvester_deerfield_factsheet_nov_2014.pdf
Posted 5/24/2017 5:48 AM (GMT -5)
Chas,

I had a CyberKnife radiation and this can be used to spot radiate recurrences after prior radiation e.g. with IMRT. So I suggest to make an appointment with a CyberKnife treatment center and discuss your options with them. Take your chances.

George
Posted 5/24/2017 11:34 AM (GMT -5)
Thanks for all your replies!

Allen I made an appointment with Rakesh Singal, but can't see him until 6/23/17 - also put on list if someone cancels before that. I will try to switch to Firmagon and in the mean time I've requested a 30 day injection of lupron. My current Uro's hospital doesn't use Firmagon.

Peter - The Lupron makes me feel very tired all the time - no energy to do anything - Hot flashes too - but mostly the lack of energy is the worst part ---

Pratoman - Thanks for the link - used a Sylvester surgeon for my di
Vinci - I may be wrong, last time I looked there were only two NCCN centers in Florida - Sylvester is a good cancer center --

Chas & George - thanks for your input.

Bobby Mac
Posted 5/24/2017 12:13 PM (GMT -5)
Exercise may help with ADT-induced fatigue:

Effects of Different Exercise Modalities on Fatigue in Prostate Cancer Patients Undergoing Androgen Deprivation Therapy: A Year-long Randomised Controlled Trial

Can supervised exercise prevent treatment toxicity in patients with prostate cancer initiating androgen-deprivation therapy: a randomised controlled trial

"Clinically relevant improvements in Functional Assessment of Cancer Therapy-Fatigue (FACT-F) were seen at 12 wk and maintained following withdrawal of supervision"

You might want to get a trainer to provide the motivation - otherwise you just won't feel like doing it.

I think PDA tried modafinil. One man in my support group used it.
Posted 5/24/2017 12:48 PM (GMT -5)
I don't think Lupron, the drug itself, causes the side effects..It's the lack of testosterone that causes the side effects..

I must agree with TA that exercise plays a very important roll in mitigating ADT side effects..My favorite is bicycle riding, pushing it hard enough to get my heart rate and respiration rate up noticeably. Work up a sweat. A few hours later you will feel much better. The exercise also helps to slow down the degradation of bone and muscle caused by the ADT.

Like Bobby Mac, I wanted to see if my SRT was going to be successful and produce a cure. So after 18 months on ADT I stopped the Lupron. PSA remained undetectable for almost a year..But then the monster returned and I'm on ADT for the duration..
Posted 5/24/2017 12:57 PM (GMT -5)
Bobby Mac,

if Lupron did not get your testosterone below 43 it is not working well for you. You should have a value below 20 now.

So changing to Firmagon now is the right decision. Maybe this reduces the side effects for you as well.

I would not worry to get no Lupron shot for a few weeks. Usually the testosterone value takes months to recover.

My UROs also did not use Firmagon but they did not object when I requested it. I was the first patient for them. The initial dose are two shots and they just gave me one. So I came back and asked for the second.

George
Posted 5/24/2017 2:24 PM (GMT -5)
For fatigue due to low T, I take vitamin D (4500 IUs daily)
Posted 5/24/2017 3:44 PM (GMT -5)
I did try modafinil (generic for Provigil) and found it helpful but unaffordable since my insurance wouldn't pay for it. It works quite well for excessive sleepiness and seems to help with the ADT brain-fog. I still keep some on hand to help me remain alert on long car trips, especially if I have to drive into the night.

It may be less expensive now. When I was considering it the patent had lapsed and generics were available but not that much cheaper than the Provigil branded pills. Since then there's been a lawsuit and Tiva Pharmaceuticals has ponied up half a billion dollars for accepting money from the previous manufacturer to delay the release of the generic drug to hold up the price in the US.

It's certainly worth trying if it can be had at a realistic price. Be sure to check out GoodRx.com before you go buy it. You may find local prices all over the map.

Antidepressants are helpful if you find your ADT makes you depressed. I started with fluoxetine (generic Prozac) and was looking for a second drug to help with the sexual side effects when I found information about modafinil. Modafinil was my first choice but, when it proved too expensive, I switched to bupropion (generic Wellbutrin) which also helps with the horrible sexual side effects of Prozac.

You might be tempted to think that a man on ADT wouldn't be able to even notice the sexual side-effects of Prozac, but you'd be wrong. Here's a tread I posted at the time where I complain -- at length -- about the problem:

ADT4 - Prozac Giveth and Prozac Taketh Away
Posted 5/24/2017 9:24 PM (GMT -5)
Know what you mean about options. The medical oncologist wants me on Lupron for the rest of my life. She points to showing the best survival rate. The urologist wants me on Lupron for two years. More or less because that is the standard time for people with advanced cancer. The radiologist wants me off ASAP. He points to studies showing the negative impact Lupron has on the body.
If it was up to me and I has "normal" prostate cancer I would go with the radiologist. My dilemma is that I have a rare form (Ductal) which does always produce PSA. The pathologist has stained a slide from a lymph node. Thirty percent not not stain for PSA. The fear is that this 30% may be more agressive. I can not rely on just PSA. Oh well.
Posted 5/24/2017 10:03 PM (GMT -5)
Good Luck Bobby Mac !!!....great thread !!!!....David
Posted 5/25/2017 6:59 PM (GMT -5)

PeterDisAbelard. said...
I did try modafinil (generic for Provigil) and found it helpful but unaffordable since my insurance wouldn't pay for it. It works quite well for excessive sleepiness and seems to help with the ADT brain-fog. I still keep some on hand to help me remain alert on long car trips, especially if I have to drive into the night.

It may be less expensive now. When I was considering it the patent had lapsed and generics were available but not that much cheaper than the Provigil branded pills. Since then there's been a lawsuit and Tiva Pharmaceuticals has ponied up half a billion dollars for accepting money from the previous manufacturer to delay the release of the generic drug to hold up the price in the US.

It's certainly worth trying if it can be had at a realistic price. Be sure to check out GoodRx.com before you go buy it. You may find local prices all over the map.

Antidepressants are helpful if you find your ADT makes you depressed. I started with fluoxetine (generic Prozac) and was looking for a second drug to help with the sexual side effects when I found information about modafinil. Modafinil was my first choice but, when it proved too expensive, I switched to bupropion (generic Wellbutrin) which also helps with the horrible sexual side effects of Prozac.

You might be tempted to think that a man on ADT wouldn't be able to even notice the sexual side-effects of Prozac, but you'd be wrong. Here's a tread I posted at the time where I complain -- at length -- about the problem:

ADT4 - Prozac Giveth and Prozac Taketh Away


It seems to take (quite) awhile for the price of a generic to drop down significantly, compared to the patented version. For instance the insurance company and I are still paying way too much for ezetimibe(the generic version of Zetia, an LDL lowering drug), even though Zetia is off-patent since January 2017, roughly.
Posted 6/26/2017 6:55 AM (GMT -5)
I met with MO Rakesh Singal at U.of Miami (Sylvester Cancer) and glad I did. Thank you Allen!

He specializes GU cancers and focus is Prostate Cancer. Not many MO's in Southern East coast of Florida that do. He set me up for a Firmagon injection on Friday as well as a bone density scan, which I never had done before.

Good news is new blood draw shows my PSA is still <0.1 and my testosterone went down to 34, from 43.

Hoping the Firmagon will get Testosterone < 20 and lessen the side effects I have with Lupron.

Thanks all -

Bobby Mac
Posted 6/26/2017 2:43 PM (GMT -5)

Hello Bobby Mac,

Just in case ...

After quite a few months on LUPRON, my oncologist decided we should try FIRMAGON ...

It didn't lower my testosterone, as we had hoped.

I also had site injection reactions to the FIRMAGON --- think "hornet sting" that lasts for a week, with a big swollen spot that burned like a hornet sting. This happens to some fellows --- but FIRMAGON can work GREAT for many fellows.

If you don't see success with FIRMAGON --- try ZOLADEX --- I'm on those injections now --- they really knocked my testosterone levels down --- usually below 10 ---

It's a bigger gauge needle for ZOLADEX --- but they give you a tiny little numbing shot in the abdomen first --- then they wait a couple of minutes and inject the ZOLADEX --- you don't feel a thing.

So --- you've got another "weapon in the armory" --- just in case ! I've been on ZOLADEX injections quite a few months now --- so, it's there, in case you need "Plan C" ---

For any fellow receiving ADT hormone shots such as LUPRON, FIRMAGON, or ZOLADEX --- make CERTAIN you ask for an occasional hormone level test, to make sure your ADT shot is suppressing testosterone to a very low level --- I have read studies that say that testing the testosterone level is OFTEN overlooked by many doctors --- you can have it done when you are doing your usual P.S.A. tests at the lab. Just a helpful line of advice ...

Sent with my best,
"Cyclone" From Iowa State University
Posted 6/26/2017 8:29 PM (GMT -5)

Somebody said...
It's a bigger gauge needle for ZOLADEX --- but they give you a tiny little numbing shot in the abdomen first --- then they wait a couple of minutes and inject the ZOLADEX --- you don't feel a thing.

You lucky buqqer, my GP doesn't do that. Straight in with the massive Zoladex needle. Hurts like hell, but only for 30 seconds or so.

Due for one tomorrow, and I'm going to ask about the numbing needle. Thanks.

Chas
Posted 6/27/2017 2:18 PM (GMT -5)
Hello Chask,

Yes, my friend --- PLEASE ask them for a quick shot of LIDOCAINE --- this is standard procedure before my ZOLADEX injection.

They inject the LIDOCAINE in my abdomen, then they wait exactly two minutes --- and I don't even feel the ZOLADEX injection, whatsoever --- standard procedure, each time, at the clinic where I go ---

So --- please DO ask --- or request this --- they will surely comply --- tell them you've got other friends who benefit from this.

My best,
"Cyclone" --- Iowa State University
Posted 6/27/2017 10:29 PM (GMT -5)
Hey Cyclone, I went for my next Zoladex injection today and had an amusing and satisfactory experience.

My General Dr's practice is in fact a husband and wife team. I normally see the wife, mainly because she was the one who had an available slot first time I went there, so I just stuck with it, but there is no problem with seeing the husband if the wife is busy and he isn't. My last Zoladex experience was with the wife and it was painful, so this time I made the appointment with the husband.

At your suggestion, I asked him about a lignocaine injection first and he looked at me as if I was a real wimp! "What's the point of that?" He said, "you want 2 needles instead of one?". So not wanting to be a wimp, I said Ok give me the Zoladex raw. Well he squeezed my flesh for a minute and with a very quick jab it was over, virtually painless!!

When I congratulated him, he asked who did the last painful one. I bashfully told him it was his wife, and he laughed and said "I hate getting injections from her, she is too slow".

So it all comes down to technique and I know who will be doing all my injections from now on!

I'm sure my request for lignocaine helped to ensure he gave me extra careful treatment.

Thanks again,

Chas
Posted 6/28/2017 2:26 PM (GMT -5)

Hey Chask,

Sounds like you had a better experience, so that's great !

I have heard of another clinic that gives you an ice bag for a couple of minutes to numb the area, then they inject the ZOLADEX ...

At my clinic, the LIDOCAINE is standard procedure --- I wasn't given an option for LIDOCAINE first --- tiny little needle --- we wait two minutes and then comes the larger-gauge needle required for the ZOLADEX injection. This way, I don't feel a thing at ALL !

Seems that between LUPRON, FIRMAGON, and ZOLADEX ... ZOLADEX seems to be the ADT shot that I hear the least about ... I've tried all 3 kinds ...

Yes --- I agree --- there is a degree of expertise required in making these shots go better --- you can tell those that have a certain level of expertise, compared to those who are novices ... trouble is, you have to be a novice first before you can build up your expertise, right?

All my best,
"Cyclone" ~ Iowa State University
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