Just noted on my lab results ( prior to meeting with MO) that my Total testosterone is pretty far down on the scale ( 341 with on scale of 250-1100) and Free Testosterone of 31ng/ml on scale with low point of 35ng/ml. Does this have any Tx implications for ADT.... ie need less of a dose to reach Castrate levels?? What are the implications of low Free Testosterone in recurrent Pca??
Free vs Total Testosterone: Just noted... - Advanced Prostate...
Free vs Total Testosterone
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Tommyj2
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That is not nearly low enough for Lupron. The goal for total T is < 20. Free T depends on the amount of SHBG you produce.
Thanks Allen.... I realize that I'm not going to escape ADT due to low_ish. T ...was just wondering if it might take less of a dose to reach castrate levels and thereby maybe the possibility of reduced
Side Effects... Get my CT scan results in a couple of days and I'm grasping at straws..
No, you can't take a lower dose - it's all or nothing.
My Testosterone is /was about the same as yours. For several years. I had a 6 month Lupron injection in April.
I've had negligible side effects. Mostly enhanced pre-existing laziness.
My (totally uninformed) theory is that men with a 'start-out' T up in the mid-range or higher experience a plumet of a hormone their body is used to. The body fights back, sending out alerts - "something's not right in here."
In my case (maybe yours), I think the T did not have far to fall, so I didn't get the problem side effects that are reported.
(I kinda did want a 'hot-flash or 2, just to reassure myself that something was happening) never happened.
I can not TELL you how much I hope that this is the case with me as well....I too am wondering if those of us with not as far to fall will have minimal side effects... I am freaking out about the possible effects of this damn drug...my QOL sucks enough already and I don't need a host of side effects to screw it up further... wishing you a hot flash or two : )
Don't freak out about the side effects until you have them. My experience is that it's a use it or lose it situation. Stay active both physically and mentally and it won't be that bad. Lay on the couch watching TV for a day and that's when fatigue and brain fog are most likely to strike.
I get a few hot flashes most days, usually in the evening. I woke up with the bed soaked in sweat exactly once, and that was early on in treatment.
Overall, not as bad as the symptoms I had before diagnosis.
Try to push it down to < 7 if possible. 341 is still way to high.
I guess my question was not clear... I KNOW that my current T levels are no where near castrate levels.... Just wondering if they might require LESS of an ADT dose to push them TO castrate levels because of being low already..... My hope is to reduce Side Effect Profile....thought I don't actually know if lesser dose = less SE's
I think the answer is no, you can't get by with a lower dose of Lupron. Not sure a T level of 341 is really that low anyway, if you're over 50. Many have a higher baseline number at that age, but many do not.
Yeah that seems to be the general consensus.... too bad. Don't know how common a T of 341 is for men in their 60's but perhaps not at all uncommon..... just that when others in this forum have commented on their Total T it seems to be mostly in the 500 range..... don't recall their ages off hand.
For ADT to do its job the total testosterone has to be lower than 50 and most MOs will prefer a total T less than 20.
Must have phrased my question poorly.... I KNOW I'm not nearly at castrate levels and will need to be... Just wondering if being lower in Total T I might be able to take a lower dosage of Lupron and potentially lower Side Effect Profile.... So far the consensus is " No "....thanks for responding.
I had a total T of 180 when I started ADT. A 3 months dose of Lupron reduced the total T to less than 12. Three months later after the Lu 17 PSMA treatment, we decided to stop Lupron. My testosterone never recovered and I continue to have castrate levels of testosterone until today (3 years later). I wonder if other patients are in the same situation and getting Lupron even when their testis has been put to sleep by the first dose of Lupron. If I had to start Lupron again, I would not take the second dose. I would measure PSA and T every month and get Lupron again if and when the total T starts going up.
Best of Luck on this journey. A fellow traveler.
Thanks for the info Tango.... this is certainly something to consider...maybe men with tT levels that are already low respond more radically to ADT and DON'T need to continually get more and more ( which seems to me only good for producing side effects)... I'll discuss this with my MO who was aready thinking of putting me on Intermittent as it is given my major worries about the whole process..
How old were you when you started Lupron??
I was 72 years old. Many patients in intermittent ADT are really in continuous ADT since their testosterone levels do not recover as soon as Luprons is stopped. I believe, to do intermittent ADT one has to stop Lupron and measure T every month and see when it is higher than 50. If one goes only by the PSA, one never knows for sure how long one has been in intermittent ADT.
Don't know how intermittent works.... I thought that the only relevant measure was PSA irrespective of whether T levels rose otherwise why bother?? If T is going to remain at castrate levels then there would not seem to be a reason to bother with intermittent since nothing has really changed ( except , perhaps, for the pocketbooks of those administering the drugs..... why pay for something that you don't need??
Interesting point to ponder AND to ask about further...
Yeah, all the info I've seen is to make decisions about intermittent treatment based on the doubling of the PSA. In my case, the PSA also started out low so kind of useless for making decisions from.
I'm now told that Radiology can give a good measure of whether the cancer has regressed or is progressing.
I'm starting radiation treatments in the next couple of weeks.
I'll keep you updated.
Is this salvage radiation or a first go round with definitive treatment?? Did you have initial Prostatectomy?
Nope, first time around. My trip just started in March, 2019.
No prostatectomy.
I also have a couple of small METS. Along with the radiation of the primary tumor, I'll also be getting targeted stereotactic radiation to the metastatic lesions.
Not trying to be a busybody...but how did you end up without this Dx'd earlier... Did you have an MD that just didn't believe in doing regular PSA??.... Hope your radiation is successful.... Best of luck
No problem - in this community, not being forthcoming is kind of self-defeating
I've had a diagnosis of BPH for years, taking Finisteride, controlling the symptoms, and seeing a top-notch Urologist every 6 months. Digital exam negative every 6 months.
Then, on the most recent visit, "I am feeling something, we should do an MRI and probably a biopsy."
I'm not dumb.
"How soon can we start?"
MRI: PIRAD 5 and Biopsy: GLEASON 8 - Bone Scan: METS on the spine and tibia.
(0 to 60 in 6 months or less)
BTW, PSA: 2.14. Testosterone 341.
I'm learning that low PSA in the face of the other findings probably indicates an aggressive cancer.
So now I follow every post on this community. I read the abstract and conclusion of every article that TallAllen, Patrick, or Nalakrats posts. I bitch to all of my doctors about things moving too slow in this University system with too many chiefs. I quiz them until I think I understand their reasoning behind every decision.
What can I do to see more birthdays? I'm 79 this week. We have a get-together Sunday where I expect to see my 3 children, 8 grandchildren and a whole gaggle of great-grandchildren, some assimilated by married grandchildren. One of the great-granddaughters is making college applications. I have a granddaughter that's a physician and another that's a Physician Assistant (hospitalist) in the same University system that treats me.
And every season I'm Santa to several hundred of the most delightful kids you can imagine.
I have innumerable reasons to be sure that, on my side of the equation, I've done everything possible to see lots more birthdays with way too many progeny to ever remember all the names.
Sorry everyone for the verbosity - I know that a post is not supposed to be a book.
That is a truly unfortunate circumstance.... too many stories like this on this forum....don't think the general public has ANY idea how tricky this disease can be particularly how useless PSA testing can be at times.... imagine what would have happened had you NOT had BPH and regular follow up by a Urologist. Glad you have a large extended family to give you a reason to keep on pluggin away.... I would bow out of this process if I could ( single, childless, friends and family dying off and/or moving away).... other medical problems are putting an end to many of the activities that kept me going..BUT... our medical system is not set up to allow those of us who have had enough to say...." Take me out coach I no longer feel I can play".... SO.... I'll hope that my results don't come back negative enough to make me wish harder for this.....
At first, I considered just not doing any treatment. Mainly because I couldn't see a way to afford the different treatments.
I think I have that part under control.
So for now, I'm leaving it up to God to let me know when it's time.
I understand where you are. I trust God will also let you know when it's no longer time to fight but time to surrender. I pray that He does not tell you to surrender for decades yet.
Likewise.... if it weren't a long and painful death I might have considered allowing the disease to kill me ( initially that WAS my thinking and guided my Treatment decisions at the beginning) but as the reality began to dawn that it will kill me I lost my nerve..... I, too, wonder how I am going to afford advanced treatments if/when I need them.... find out tomorrow if I can just pursue ADT or need something more involved( CT results will be discussed and I have no idea what they will be) not sure if local/distant soft tissue infiltration warrants chemo or advanced Tx or can be handled by ADT... most references to type 4 seem to be related to bone mets....
May have to change to different ADT. Lupron doesn't work for all of us....As you have probably found out, we are all different. Nothing is certain with Apc.
Tommy,
There are numerous PCa studies that look at total testosterone [tT] as though it is the most meaningful androgen measure.
Far fewer studies took at free T [fT], which is the bioactive form. In normal cases, ft is ~1-2% tT.
The remainder is bound to protein. About half is bound to sex hormone binding globulin [SHBG] & about half to albumin. SHBG-T is unavailable, whereas albumin-T is loosely bound & some could potentially become fT at some point.
Unfortunately, many labs estimate fT. The formula uses tT, SHBG & an assumed value for albumin-T. Nonetheless, fT is more meaningful than tT in many instances.
Cutting to the chase:
In a Spanish study: "The castration level of fT was established at 1.7 pg/mL." [1]
From a German study [2]:
"Despite the fact that free testosterone (fT) is the biologically active form, it is common practice that androgen suppression is monitored via total testosterone levels only."
"Despite the fact that all patients were undergoing androgen deprivation, the mean serum fT levels for each patient varied; the mean fT concentration in the cohort was 0.328 pg/ml, ranging from 0.01-9.1 pg/ml."
(Please check your fT units? Something looks wrong.)
-Patrick
Incidentally, as I have reported before, Dr. Myers has said that the success of ADT does not depend on tT levels, but on DHT levels. While they correlate well, some men produce DHT via an alternative pathway that does not depend on tT or fT.
[1] ncbi.nlm.nih.gov/pubmed/282...
[2] ncbi.nlm.nih.gov/pubmed/281...
I don't know that the fT results were expressed in any units on my patient portal.... I'll have to check.... imagine I simply substituted ng/ml as that was how the tT was measured...
Bob
Thanks Patrick. This is information I needed.
TJ2: I don't recommend this, but I am taking a lower dose of Lupton by spreading out monthly shots to every 5 or 6 weeks. The reason is I'm smallish at 145 lbs, and I read the European and Japanese are using half the US dose (11.5mg per 3 months). I'm also on Zytiga. After about 5 months, T < 10 and psa <0.1.
Side effects are from the body having no T, so the dose wouldn’t matter, <20 is the goal and the only choice you have is a 3 or 6 month shot.
Ed
• in reply toEdBar
My Lupron shots are 4 months apart. The dosage is based on the time between shots and when I check the syringe prior to the shot it is a pre-loaded dosage so I don’t think there is any lower dose unless you stretch the time between shots.
EdBar• in reply to
Mine are 3 month shots, and have been for 5 years, didn’t realize there was a 4 month but now I know.
Not all pharmacies carry it. The one where I get my Lupron shots has 1, 3, and 6 month, but not 4. This led to a snafu when I thought I was getting the 4-month shot and got the 3 instead. You've got to watch 'em closely, and fortunately I caught the mixup after only one milder dose.
I get my shots at the medical center I get labs, scans, treatment etc. They always have two nurses present who verify dosage, patient info, etc.
As if we don't have enough to worry about already!... Having to keep an eye on medical personnel in order that they do their job correctly is simply unacceptable....
I have been on the 6 month lupron shot for 2 and a half years. My T has never been measured. I'm a little jealous of you guys; on the other hand, one less thing to worry about.
How are you doing with side effects after 5 yrs on the same drug.... I'm about to start ADT and have to know which drug to argue for initially..... have you been on others?? Lupron working well??
Tommyj2• in reply to
How are you doing with side effects?? Are you an active person??..... I'm about to start ADT and very concerned about being able to keep up with my previous workouts etc.... Spent a lifetime staying in shape and loathe to lose all of that...
I exercise daily alternating brisk walking and weights/ resistance bands/abs/core I’ve been able to maintain normal BMI and although I may not have the strength I once had I feel like I stay pretty toned for a 60 year old guy.
The days I don’t feel like exercising I push myself to and almost always feel better afterwards.
Ed
Think that the strength loss is due to the lowered T or due to getting older? Glad to hear that you have been able to maintain BMI and tone in your muscles..... Realistically...how much time do you spend on exercise each day??
Probably both but more likely to loss of T. Just can’t bench press and lift like I used to, so now I focus on less weight, and reps so I can stay toned and pursue activities I enjoy. I exercise around 45 minutes a day and rarely miss a day. I throw yard work and swimming into the mix as well. Keeping my weight in check and staying in shape as best I can is all part of the battle.
Ed
Thanks for the info... presuming that you used to spend some gym time when you mention that you can't bench like you used to..... I'll be battling to keep weight in check and muscles toned.... just hoping that I don't lose too much strength to continue doing my Trail work....... keep wanting to predict the future but just going to have to see how the meds affect ME.
• in reply toTommyj2
My PSA has been undetectable for six months now, I took Zytiga for 3 months but stopped in April due to SE. I've had two Lupron shots, 4 months apart and have declined further because of the harsh side effects. I haven't really experienced fatigue like many have, but hot flashes, loss of libido, ED, and cognitive problems with concentration and focus. I've never been much for exercising, usually some treadmill or elliptical for cardio, but have tried to do more since DX. I have put on 10 pounds in spite of a plant based diet but compared to many that is not much, so far. After stopping the Zytiga the mental issues went away and I'm hoping the others will subside soon now that I'm off the lupron.
Tommyj2• in reply to
What will you do if your PSA starts to rise??..figure we are kind of caught between the devil and the deep blue... Try another of the drugs?? There is SO much variability in who and how SE's are experienced.... appears some guys get barely any and others are hit so hard they can barely function... if you don't mind my asking... how old are you and what was your Testosterone level when you began tx?
I'm wondering if some guys with lower testosterone don't have as harsh side effects due to T having a shorter distance to fall.....
• in reply toTommyj2
I was 65 when diagnosed, gleason 7 with maybe a met on left femur. Subsequent MRI on femur got two opinions that it is not cancer but a benign lesion, so I'm possibly not metastatic. Should my PSA start to rise I plan to follow the Adaptive Therapy method from Moffitt Cancer Center in Tampa: take Zytiga to knock it down again and then stop until it rises the next time. The patients have been able to go on vacation from ADT for 5 to 12 months at a time. Also, they have had great success with delaying the failure of ADT from the median of 16.5 months to somewhere past 40 months. In 4 years of trial they have yet to reach median time to failure for the patients. I'll endure the short time ADT with vacation in between.
My MO at our last visit said my PSA is not going to rise, that he is confident that the IMRT and short time on ADT has put the PCa down for good. I hope and pray he is right, will have to monitor PSA for a few years to be certain.
Actually...some of the side effects ARE from the med itself.... men who have had orchiectomy don't have all the side effects that people on Lupron have... though....admittedly... the lions share of the bothersome side effects ARE from being without T... I wonder if Male Cats that have been neutered have Not Flashes : )
Tommy,
Older literature on hypogonadism gives 300 ng/dL as the cutoff. Today, 350 ng/dL is more common. 341 ng/dL is at least borderline.
Men diagnosed with PCa generally have lower T, & those with the lowest T have a poorer prognosis. A man in his 60's has had 30 years of decrease at 1-2% / year. But PCa itself seems to lower T: three studies have shown that T is higher 12 months after a prostatectomy. The first was by Walsh at Hopkins; the other two confirmed his findings.
I believe that many men going into ADT are closer to 350 than 550 ng/dL.
If low T is due to low levels of Leydig cells, you would still need a normal dose of Lupron to suppress luteinizing hormone [LH]. However, if your T is low because estradiol [E2] is elevated, there is already some degree of LH inhibition. The male body tries to control E2 via T reduction, since most E2 is due to aromatization of T.
-Patrick
(Interestingly, doctors take the attitude that a man who lacks symptom, does not have hypogonadism, regardless of T level. &, commonly, a man who has symptoms is out of luck if his T is above the cutoff.)
I had "low normal" T for several years before my Pca Dx. I had taken topical T supplementation for a couple of years just prior to my Dx. Now, a year after RT, brachy and stopping 18 months of Trelstar, my T has returned to around the same "low normal" level, and PSA is at 0.01, up a little from the 0.008 cutoff. I realize low T may be indicative of a poorer prognosis. Can you share some thoughts on possible treatment considerations, should PSA start heading to 0.2 and beyond, given a tendency toward Low T?
Thanks
Ideally, one returns to normal T after stopping ADT. Since that is unlikely to happen in your case, what could be the objection to T replacement? If it's OK for a man to return to a T of 600+, say, what is the problem with helping others achieve that? It seems to be the only option.
Of course, I'm not qualified to give advice.
Note that PSA tends to rise as T increases through the hypogonadal range. That can be unnerving to some. It tends to settle down thereafter.
-Patrick
I understand your question concerning the size of your dose, and my guess is that regardless of where your current PSA is right now you get the same dose. When it drops below 20 you will get the same dose. You might want to talk to your oncologist about the length of the dose. 30 days or 90 days, etc.
Tommyj2• in reply to
Looks that way doesn't it. Thanks for responding
341 is in normal range for someone of your age. You need to get it below 20 and Lupron or any of its kin don’t come in a graduated dose. You might ask your MO about using estradiol patches instead of Lupron . They’re easy to use and have way less side effects and dose can be changed based on number of patches used. I started with four and reduced to three .1 mg patches changed twice weekly after T went below 7 and Psa declined. If he isn’t familiar with these refer him to the PATCH clinical trial in the UK. If he doesn’t want to try the patches there are one, three and six month Lupron doses available but they all deliver the same daily dosage. Frankly I found trelstar to be better than Lupron and patches way better than either in terms of side effects.
Bob
Thanks for the information..... opinions vary wildly depending on personal experience but I am still interested in everyones personal experience. I know from other posts that you are happy with the results of your estradiol patches but I have read elsewhere that many men are very unhappy at the breasts they developed with them..... Difficult to know which way to go.... I'll have to have this discussion with my MO when I see her on Thursday.... thanks..
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youtube.com/watch?v=D0MtzQD...
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 08/06/2019 8:06 PM DST
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