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Re: Subject: Lupron Depot– HELP NEEDED with an Unusual Case
Hi Alan, my research and doctor told me that if you have been on Lupron for 3 months it will take 3 months to get out of system, if you have been on for 6 months it will take 6 months to get out of system.
Re: Subject: Lupron Depot– HELP NEEDED with an Unusual Case
Hi Bruce,
Thanks for responding. We have talked about conflicting information before and this is yet another example. The first Tech I talked to at Abbott Laboratories told me that it was up to three more months for BOTH the three & six month injection.
You mentioned that this information came from your research, as well as your doctor. If you can remember where you read that, I would appreciate knowing the source so that I can read up on it as well.
Re: Subject: Lupron Depot– HELP NEEDED with an Unusual Case
Just get your testosterone blood test it will tell you what you need to know. If the Lupron is still having an effect your testosterone will be down to castrate levels. Once it starts moving up it will come into the normal range for you, which even if you are on the low side will still be about 10 times greater than at castrate level.
The Luprone blocks a receptor and can do some damage so not everyone will have their testosterone return to normal at the same time. It is not the same as waiting for a drug to just clear from your body.
Re: Subject: Lupron Depot– HELP NEEDED with an Unusual Case
Frank, I appreciate the helpful information. I am glad to see that you agree that having my testosterone level tested is the way to go. However, unless I am missing something, I still have a problem, which has to do with what you said about not everyone having their testosterone return to normal at the same time.
I do not believe that I should have the CDU or MRI until my testosterone fully returns to its “normal” level, but how I am I to know when that will be. If, when I am tested, it is in the normal range for an adult male (which I am told is 241-887), it will tell me that the Lupron is no longer having its full effect on my system, but it won’t tell me whether or not I am moving up to my normal level or am already there.
In other words, if I get a reading of 383 for example, how will I know if that is my normal level? I don’t think that is something I can know with just a single reading. It may very well continue to move up as the “lingering” effects of Lupron leave my system. The six month dosage time period expired on December 8th & the only thing I can think of doing is to get a reading now & then have it rechecked down the road 3 to 6 months after that December date. After all, it is just a simple blood test. The down side to waiting is that I am just not comfortable waiting six more months to have those scans done since it will be a whole year & a half after my poor biopsy results. Still, it would be worse if I had the scans done too early & got false negative readings as a result.
As I said, if I am missing something, please let me know. Any & all comments are welcome.
Re: Subject: Lupron Depot– HELP NEEDED with an Unusual Case
Alan,
In what I say below, I cannot give you any references to specific sites - it reflects what I have read and learned over the years and some of my personal conclusions:
1. In discussing and reading of the effects of Lupron (and other ADT drugs) over the years I now believe that there is as much uncertainty as to the effect of the medications and the 'recovery' periods as there is for all other aspects of the disease. After all Lupron does NOT lower testosterone in some men: it does NOT change the PSA in all men: some men have very few side effects: some men have serious side effects: some men report returning to a pre-ADT conidtion within the kind of times indicated to you, some men report that they never recovered (this is usually from long term ADT use. It is so important to remember that most medical people when quoting studies etc will quote the MEDIAN outcomes. Yet what is even more important is to know the RANGE of the outcomes - and why there is a variance. It is only once that is better understood that an individual can possibly fit his personal position into the study results.
2. I believe it is clear that the stucture of prostate gland cells can be changed irreversibly by ADT drugs making the use of the Gleason Grades/Scores useless. Note I say CAN not IS, because again there is no certainty. It makes sense to me that the change is likely to be permanent, but that's just my view.
I just want to add a "Health Warning". Many of my views are not those of the mainstream players in the prostate cancer industry. But hopefully they will give you some ideas of what to look for to form your own conclusions.
Re: Subject: Lupron Depot– HELP NEEDED with an Unusual Case (Terry's response)
“I believe it is clear that the stucture of prostate gland cells can be changed irreversibly by ADT drugs making the use of the Gleason Grades/Scores useless”.
Terry,
Thanks for the insightful, yet unsettling information. I say unsettling because the above statement is the kind of thing that makes the hair stand up on the back of your neck. After all, if I understand you correctly, it is possible that the Gleason score can no longer be relied on once you have taken Lupron. For someone like me practicing AS that would be devastating since I consider the Gleason score to be the most important factor in choosing to forego treatment. (I believe most people would agree with that as well).
So, I am writing to ask you if I have the facts straight as you see them. If I don’t, please set me straight. If I do, then I would appreciate it if you could give me a little more insight regarding your ADT education as it pertains to Gleason scoring. For example, could you explain why the cancer cells were still able to be graded as a 6 on my last three biopsies? Wouldn’t the Lupron (which was initially given to me after my first biopsy) have altered their look based upon what you have told me? I know you say “CAN be changed irreversibly...”,not IS. Does that mean, in your opinion, that if my cells are still able to be identified as a Gleason 6 that I am one of those people lucky enough not to have had their cells adversely affected?
Obviously, I need help to better understand all of this. So, any additional information you could give me would be greatly appreciated.
P.S. I should note that I am not one of those people that Lupron had little effect on. I experienced a loss of sex drive (after an initial spike), which I can only assume meant my testosterone dropped to castration levels. (Abbott Laboratories says that the drug causes “medical castration”). My PSA dropped. I also experienced hot flashes, bouts of depression, fatigue etc. My wife calls me Mr. Side Effect when it comes to drugs and Lupron was no exception.
Re: Subject: Lupron Depot– HELP NEEDED with an Unusual Case (Terry's response)
Alan,
I’ll just start with a cautionary word or two. I am a high school dropout: I have no medical training; all I have learned about prostate cancer is what I have read over the past fifteen years; my views on any number of subjects tend to be what has been termed ‘contrarian’. I take that term as a compliment because I recognise that all my life I have tended to views that are not held by the majority but which have served me personally very well indeed.
So, back to ADT and Gleason scores. Are you aware of the PCPT (Prostate Cancer Prevention Trial ? As the summary on the linked piece says, this very large well designed study was intended to establish whether Finasteride aka Proscar would prevent prostate cancer developing. Early reports seemed to support that premise, but the Trial was stopped 15 months early. It was said that all objectives had been achieved, but there was a view that it was stopped early when it appeared that although there were fewer men diagnosed with prostate cancer, those who were diagnosed had a higher level of potentially aggressive disease as defined by the Gleason Scores in their repeat biopsy procedures.
Well, that report set a cat among the pigeons and the arguments raged throughout the media and Internet. All manner of inferences were drawn about the study design, the interpretation of the outcome and the like, as is usually the case with any result that is not in complete accord with current thinking.
One of the points made very strongly, by men whose views I admire was that Proscar had changed the structure of the cells in some cases making them appear to be less well differentiated and therefore being given a higher Gleason Grade. Dr Gleason himself said that his system should not be applied to material from men who had been given Proscar.
That made sense to me because some well known surgeons had said for some time that they would not operate on men who had been on ADT because it was difficult for them to distinguish between normal tissue and diseased tissue in those cases. Some radiologists also objected and did not support neo-adjuvant ADT ahead of radiation because they felt that the change in cellular structure might affect the dosage required to achieve the results they were looking for.
So, MY PERSONAL VIEW is that grading of material recovered after ADT MAY differ from material recovered from the same gland prior to ADT and I would personally not rely on those results.
Of course, in MY view this also means that if the ‘aggressive’ tumours diagnosed might have been incorrectly graded, the less aggressive ones might also be incorrectly graded. In other words the apparent reduction in the number of men diagnosed in the Proscar arm may have been a function of under-grading because of the change in cellular structure.
I don’t know if this makes sense to you – if not please challenge my logic. I like a good discussion as long as there are no personal attacks. I don’t mind people thinking I’m a bit of a fruit loop – I’m just not quite so happy when they say so.
Re: Subject: Lupron Depot– HELP NEEDED with an Unusual Case (Terry's response)
Just to clarify one point in the light of an e-mail just received. I was not suggesting for a minute that Alan was attacking me or my views. Polite disagreement is great, but he wasn't even disagreeing - merely seeking a bit of clarification in a complex subject.
I'd hate anyone to hold back because they thought they might offend me by arguing. What I object to is the person who abuses me but offers nothing more than the abuse - and there was no way that Alan's post did that.
Hope that clarifies the issue for one and all. I have mailed Alan directly.
Re: Subject: Lupron Depot– HELP NEEDED with an Unusual Case (Terry's response)
Hi All - especially to Terry & Alan!
Alan has asked me to participate in this forum, but I currently have limited internet - e.g. I'm restricted to iPhone access only until about mid-March. It's extremely cumbersome and blinding to try to read thru forums or do any really intense reading using this tiny screen. Typing anything of length is another story entirely...
But, since Alan took the time to reach out to me personally and followed up to tell me that my response was helpful, I thought I would make the effort (on my iPhone) to post my response here.
But, before I post my response, I would like to add one point that I didn't think to make in my response to Alan. When I was diagnosed, it was as a Gleason 3+3=6 and I was staged at T2A. But, once my prostate was removed and the gland fully pathologized (my word? :-)), my Gleason became 4+3=7 and I was re-staged to T2b or T2c, I don't recall. So, my point is that until the entire prostate has been pathologized, you have no way of knowing exactly how accurate your Gleason score and subsequent staging really is...
So, here's the response I sent to Alan - hopefully it will be of interest and, even more hopefully, prove helpful...
========= Begin Email Response to Alan ==============
Hi Alan,
I was able to review your Lupron discussion and I believe the gist of your question is "how long do the effects linger" and "does Lupron, in fact, shrink the tumors ".
With the caveat that I certainly don't know your whole story or history, I'll answer the second question first... My understanding for the use of Lupron or any Hormone therapy is to eliminate testosterone, as much as possible. Testosterone 'feeds' the tumors and causes the prostate to become enlarged. So, while I can't say this definitively, it's my understanding that Lupron shrinks tumors.
Having said that, let me move to your first question... 'effects of Lupron' are varied and MANY...
How long a 6 month shot continues to shrink (or maintain shrinkage of) tumors is not a question I can answer with any authority.
But, using my own experience, I can tell you that the emotional side effects I experienced with my single 4 month injection remained with me, in varying degrees, for a long time. I can't recall specifics, at this point, but I would estimate the sadness, depression, irritability, etc remained for 2 or 3 years - all from a single 4 month injection.
As I recall, the ability to return to a 'usable' erection took a year, but that was also post-surgery.
I don't think anyone can give you a definitive answer to just how long your 6 month shot will linger, I think a lot depends on you specifically. e.g. Just what level was your testosterone prior to the shot, how much testosterone does your body normally produce, etc...
But, based upon the lingering emotional side effects I endured, I would say its certainly possible your 6 month shot could continue to, at least, maintain shrinkage for many months - I SUSPECT the gentleman's 6-6 estimate is reasonable... But it could be even longer...
I can tell you this... From my own personal experience, I would NEVER allow another Lupron injection UNLESS I had run out of options and Lupron was the only thing that would keep me alive. Removing a cancerous prostate and handling any potential surgical ramifications is, IMHO, a much more positive approach
To this day, I sincerely regret allowing that single 4 month injection - it made our lives miserable for a long time!
I hope I've helped, at least a little... I will be restricted to this iPhone for another couple of months... please take that into consideration if I can be of further assistance.
Life is great!!!
All the best!!!
Danny
========= End Email Response to Alan ==============
Please, if anyone needs to followup with me, please email me at pngunme@gmail.com until I am back on the web on a normal sized appliance.
