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lupron? And are side effects as bad as they sound?

bella3
Posts: 25
Joined: Jan 2017

My father is 83 diagnosed with G4+4, 14psa and a clean bone scan 2 1/2 years ago.  Finesteride due to enlargement for several years but otherwise symptom free.  Now, psa is up to 49 then 56 one month later.  Bone scan shows many spots..a sizeable one on sternum, others on ribs, pelvis, a bit on the spine.Still no pain at all.  Good quality of life. Very healthy diet and works out at health club 3-4 times a week and extensively in garden in summer.

Other problems...9% kidney function but still no dialysis because monthly labs are stable and he feels good. diabetes, high blood pressure.  He looks pretty bad on paper but doesn't look or act sick and has a very positive attitude.  (although he does not yet know about the bone results).

Medical oncologist wants him to start HT asap but after researching I'm so afraid that the side effects will make him miserable. Or that it might cause him to need dialysis sooner.  Xoinga seems like fewer side affects but can it be tried without having tried HT first? what about waiting to start HT until he starts to have pain, etc?

He relies on me to be informed (ignorance truly is bliss!) and will do whatever I suggest.  I would be grateful for any advice or insights.

Swingshiftworker
Posts: 1013
Joined: Mar 2010

I believe you have good reason to be concerned about starting your father on Lupron at this stage of his life.

The reported side effects of Lupron and other HT medications are not good.  Your father is 83 and currently has a "good quality of life."  Is there any reason to disrupt his quality of life by starting to use Lupon (or other HT meds now)?

The questions that I'd ask myself if I were in his situation would be:

1) What would my longevity be, if I didn't have cancer? 

2) What is my likely longevity, with the cancer I have, if I do nothing? 

3) How much longer could I live if I start HT now and it's successful in reducing my PSA level?

Of course, there are no definitively answers to these questions but they need to be considered becuase your answers to them will determine whether the likely reduction in your father's quality of life caused by Lupon (or other HT drugs) is worth the estimated increase in his longevity using them.

On the other hand, since it is reversible, you could just try the medication and see what happens.  If the side effects are atrocious, just stop taking it.  If you think other HT medication would be less harmful than Lupon, suggest them to your father's physician and try them instead. 

Only you and your father can make the choice.  Good luck!

bella3
Posts: 25
Joined: Jan 2017

Swingshiftworker,

Thanks so much for your thoughtful response.  Your questions are very helpful in organizing my thoughts, especially after being overwhelmed by hours of research.  I am hopeful his oncologist and nephrologist can provide some guidance.

As far as HT, my understanding is that the side effects can last a long time after the HT is stopped and may be even permanent, especially in the elderly.

Ugh, I hate the thought of having this talk with my Dad.

 

Rakendra's picture
Rakendra
Posts: 198
Joined: Apr 2013

I was diagnosed at 81 with stage 4 and massive widespread matastases.  I opted for orchiectomy.  In my case, I took bicalutimide for one year and had horrible side effects.  When I stopped, so did the side effects.  My Singapore specialist said that he would not have given me the bicalutimide with an orchiectomy.  My idea is about quality of life for a man your father,s age.  I would be very careful taking chances with meds that can have severe side affects.  As for me, I am now 85, am very grateful for my past life and my present life.  The future does not exist for me, and has no importance in my life.  The present moment of life is my celebration.  love, Swami Rakendra

bella3
Posts: 25
Joined: Jan 2017

Thank you for your input.  My dad would be all over that.  He is pretty cynical about modern medicine and super compliant with exercise and diet which we believe and to the docs surprise that he has maintained a good QOL for years with such low kidney function.  He refuses dialysis or even prepping for it until he feels sick and he is of like mind regarding no cares but the present.  

VascodaGama's picture
VascodaGama
Posts: 2988
Joined: Nov 2010

Bella

You are wonderful and your father is very fortunate for having you to look after his problem.

In your post above I think that you meant Xofigo when saying Xoinga. This is a kind of drug using an isotope of radium 233 (radiation) administered to tackle/kill cancer in bone. It is recommended when there is a wide spread of metastases making it impossible for spot radiation at certain areas of the body, done externally via convenient RT equipment (EBRT). Surely Xofigo as well as any other treatment for prostate cancer has risks and side effects that you need to consider when chosing. It is known that injected radio-isotopes can affect the bone marrow impairing the immune system. This weakens the body to fight other illnesses which in the case of your father could be inappropriate. You need to discuss with his doctor about the benefits but also the risks in case you consider such a treatment.

Swing above gave you the details and sets it well. What can be the best for your dad at his age, with a collection of medical health problems (just on paper) and his lovely quality of living?

Hormonal therapies are palliative but manage to provide control on the advancement of the cancer for long periods of time. These work by suppressing the cancer of its "food" (the androgens). Oncologists use several tactics for the accomplishment, blocking the path ways that feed the cancer or stopping the production of androgens (testosterone) in our body. Casodex is an antiandrogen common in PCa treatments. It is a pill taken daily and the effects are mostly related to the cause of the lack of androgens (stimulation) at affected body functions. It will cause lesser libido but it also can increase the risk for high blood sugar, prejudicing cardiovascular and diabetic patients. Lupron, also a common drug in PCa, is an agonist that leads to hypogonadism (low levels of testosterone in circulation) and therefore all the symptoms related to such a status, similar to menopause. It also adds similar risks to those of antiandrogen medications because of lack of testosterone (T) in circulation. Some guys seem to accept better the condition than others independent of their age. The experiences reported go equally to: very nasty to mild or unnoticed. Surely one must consider its implications on other health situations, requiring constant vigilance of lipids, etc. 

Your dad's case is very advanced due to the spread but he is symptom less (some guys are) and that is a plus. However the condition requires some kind of treatment to avoid more deterioration.
I notice that he has been taking Finasteride which is a drug used by oncologist to moderate cancer aggressivity. It prohibits the manufacturing of dihydrotestosterone, a sort of refined testosterone 10 times more potent that T, most wanted by the cancer for its druggy parties. His doctor may have recommended this drug to treat benign prostatic hyperplasia (BPH). However, oncologists know that Finasteride halves the PSA signifying that your dad's PSA of 2 1/2 years ago (at the age of 80) was in fact 14x2=28 ng/ml, and now it is 56x2 corresponding to PSA=112 ng/ml. This information provided in your first post indicates that your dad's doctor did not consider attacking the cancer at the time but trying controlling it with palliative intent. This is common practice in older patients for reserving their quality of life.
This time thinking on cure may be again unpractical. Probably trying to hold the cancer at its track with the lesser side effects is the best choice and that should be procured within the hormonal arsenal.

He can do it with chemical castration (Casodex+Lupron; Firmagon) intermittently (on/off drugs periods) or surgical castration (orchiectomy) permanent condition. Both have side effects being the worse fatigue. The choice depends in his wishes. You need to research details and discuss with him. He should be aware of his advanced status. Most probably his bones are weaker and in need of bisphosphanates. I would recommend you to consult a medical oncologist specialist in target medications for prostate cancer. Someone with the skills like Dr Charles Myers or Dr. Stephen Strum, that manage wonders in the treatment of advanced cases. Please see this video regarding the treatment of bone metastases in a similar case.

https://askdrmyers.wordpress.com/2013/05/10/disappearing-bone-mets/

Please note that I have no medical enrolment. I have a keen interest and enthusiasm in anything related to prostate cancer, which took me into researching and studying the matter since 2000 when I become a survivor and continuing patient.

Best wishes,

VGama

bella3
Posts: 25
Joined: Jan 2017

He saw an oncologist who was highly recommended but little to no discussion of options and downplayed side effects to hot flashes and a little muscle weakness.  Wanted to give the injection after the first few minutes but dad wanted to wait until warmer weather when he could be more active and better counteract muscle loss.  But again, that is without knowing about the bone involvement.  When I saw the PSA increase from 49 to 56 in one month I started to think sooner.

henryb
Posts: 1
Joined: Mar 2017

With the caveat that everyone's body is different, and reactions to disease/treatments differ, my experience:

I was diagnosed with PCa almost 23 years ago, when PSA testing was relatively new and surgery was "the gold standard," and radiation second. The C word is scary enough, particularly two decades ago when a lot less was known, and just reading about the potentially horrible effects of what was then major surgery, was equally or more frightening. With a PSA of 11 at age 58, indications were that the PCa was likely aggressive. Pretty much convinced I'd received a death sentence, I dithered, did nothing for a year or more. PSA rose to 16, which some specialists said was the range that the cancer could begin to spread from the gland to establish beacheads elsewhere. The dilemma then: go through the surgery only to find it had spread, and that trauma for naught. I saw a specialist at a major medical center and actually set a surgery date for a couple months later. As the time neared, I'd heard nothing from them. Contacted them and apparently my records had been "misplaced" -- which served as a sign that I didn't want to do it. Told 'em to forget the whole thing. A bit later, a notice in nearby big city of a seminar on PCa, which I attended. Struck up a conversation with the doc, and later made an appointment with him. Told him I didn't want to do surgery or radiation, and asked if he'd work with me on CHB, which I'd been reading about online (this in the days of mucho slow dial-up modem connection). He admitted only basic familiarity with it, but agreed to work with me. I had a Lupron injection (one month was all that was available in those days) and a drug, Eulexin, which caused horrible GI upset, and I had to discontinue it. Shortly, though, Casodex became available and there were no GI symptoms. I also took 5 mg Proscar twice daily (I don't think a generic was available then). PSA began dropping almost immediately and within 6 months was almost negligible. There were hot flashes, some breast enlargement, and minimal muscle diminishment. The hot flashes were tolerable and over time lessened in intensity. After a year and a half of this regimen, I began reading about intermittent CHB, discussed it with my physician, and although he had no experience with it, he agreed for me to give it a try. After two years, I stopped everything except Proscar, which I continued to take, but just once daily 5 mg. For more than three years, PSA remanined <1.0, then began slowly rising. When it reached 3.0 (6.0 because of the Proscar), I went back on Lupron (which then was available in a 3-month injection), 50 mg. Casodex once daily, and the 5 mg Proscar. After a year, PSA was back to negligible, and I discontinued all but the Proscar. Another three years-plus of stable PSA. In the last almost 23 years, I've been on this regimen three times, for a total of probably five years, and off 17 or so (one span of almost 7 years). In the last  year and a half, at now age 80-plus, PSA began rising. When it reached 6 (or 12 due to generic finasteride), urologist suggested Casodex alone. PSA dropped for about a year, then began rising again, and because it appeared resistance might be developing, we discontinued that and resumed Lupron alone (4-month injection). It may well be, at this point, that the piper must be paid and the Lupron won't do the job it has done in the past. We'll see. But for the last 23  years, the imminent death sentence I thought I had received didn't come to pass. Except for a day now and then for bone scans or other tests, I never missed a day of work because of the PCa, continued running 3 to 5 miles daily (now walk or bike), traveled widely, including internationally, and lived a reasonably "normal" life. There was always, in a musty corner of my mind, the nagging realization that cancer cells were lurking somewhere, possibly massing forces and waiting for a chance to pounce and show who's boss. Would things have gone differently had I opted for surgery or radiation? Who knows? My urologist who has worked with me all these years has since steered many of his patients to the intermittent CHB regimen, but I'm his patient with the longest experience. As I noted at the start, everyone is different, and my experience may well be atypical. What lies ahead, I haven't a clue. But we play the cards we're dealt and have chosen. (As a P.S., in my wandering-in-the-wilderness period following initial diagnosis, I spent a lot of dial-up modem time reading about the work of Dr. Stephen Strum, whose work with PCa and CHB has contributed much to the field, and struck up an online conversation with Dr. Bob Werman, a New Yorker who'd moved to Jerusalem and was an eminent neurology researcher at the university there. Himself a long-time PCa patient on the CHB regimen, Dr. Werman's e-mail exchanges over succeeding years were encouraging, sympathetic, and always leavened with wry humor. I was saddened when he died -- of heart complications, not PCa.)

bella3
Posts: 25
Joined: Jan 2017

Thank you, Henry, for your comment.  Very encouraging.  I wasn't familiar with the term CHB, I guess also known as Triple Hormone Blockade.  Dad started with firmagon (2 injections) one month ago and immediately felt very good.  Only side effects so far are increased blood sugar and a 7lb weight gain.  his prancing had been increased but meeting with the endocrinologist soon to discuss the Lupron-prancing interaction VG kindly alerted me to here. He had a one month Lupron injection (more about that experience below) a few days and so far continues to feel good.  Our priority continues to be living better if not longer.

Old Salt
Posts: 720
Joined: Aug 2014

The information that you have provided indicates that your Dad has a serious case of prostate cancer. I am afraid that without medical intervention his QOL will begin to deteriorate before too long.

Hence, I would recommend that he try Lupron (7.5 mg); the 1-month dose. If your Dad starts to complain about the Lupron side effects, he can stop. The Lupron side effects won't last long since he only had the 1-month dose. In other words, you let your Dad make the decision for you whether to continue treatment or not.

Please note that the doctor will have him take Casodex first to minimize the typical Lupron flare.

bella3
Posts: 25
Joined: Jan 2017

You all have been incredibly helpful.  Old Salt, that is an excellent idea.  The doc described an initial injection to prevent the flare, then a three month Lupron injection.  I read the Dr Walsh book which encouraged immediate HT in cases like this but then Dr Snuffy Myers seems to precede more cautiously with maybe only the antiandrogen  in the elderly or reduced dose of Lupron.  Your suggestion might be a safe "compromise".  Trying to not dwell on the immediate horrible reactions such as stroke, cardiac arrest that I've read some have reported.

 

 

VascodaGama's picture
VascodaGama
Posts: 2988
Joined: Nov 2010

Belle,

You did inquire about the subject in another post. My opinion on the subject is that you can try Casodex alone and stop it at first sign that another health aspect deteriorates. Casodex treatment consists of a daily pill (50mg). Its half-life is 7 days meaning that your dad can stop it and expect to recuperate from such side effect causing the problem/symptom.  In general it can be taken with other drugs, however, its side effects increase (become more accentuated) when the patient has hypogonadism (lack of testosterone and/or estrogens). The typical added risk is bone loss.
Avodart (dutasteride) is similar to Proscar (finasteride) already taken by your dad. Both are 5-alpha reductase inhibitors used to treat hyperplasia. Substituting finasteride by dutasteride may improve the efficacy in avoiding dihydrotestosterone manufacturing. The drug has the same side effects.

Casodex may affect the liver when at the begining of its administration so that one should follow up with proper tests. You need to be attentive to any anemia case. Gynecomastia is typical.

I think that you should consult a medical oncologist for help.

Best,

VG

bella3
Posts: 25
Joined: Jan 2017

Thank you VG.  Ends up, doctors feel that casodex and avodart would not be effective enough and of course still has side effects.

Will Doran
Posts: 207
Joined: Sep 2015

Bella3,

I posted this on your other post.  I cut and pasted it to this post as well.

You ask About medication given in a shot in the belly?

As you know we are not doctors.  However from my experience, shots given in the belly are Eligard.  Lupron is given in the butt.  My first Hormone Treatment was a 6 month Lupron shot.  Then Medicare said that Lupron was too expensive.  They made my doctors change to Eligard. That was another 6 month shot, given in the belly.  Same medication but administered differently.  Of course in typical Government thinking, it turned out the Elagard Infusion cost more than the Lupron Infusion.  So, we went back to Lupron shot, every three months.  There may be other medications given with a shot in the belly.  I don't know.  This is what I know from my situation.  The way things have gone and from what I'm hearing and reading, Medicare coverage is going to get worse and worse as the new administation comes in.  If so, Lord knows what we'll have to deal with.

I think Casodex works differently than Lupron.  I was told that in some cases people are put on Lupron and Casodex at the same time.  Lupron triggers something in the brain that cuts back on testosterone production from the testicles.  That removes most of the Testosterone from the body, that prostate cancer feeds on.  The Casodex works on adreanal glands.  I think.  They also help produce some testosterone.  That's why women actually have small amounts of testosterone in their systems.  I'm not completely sure about that however.  VascodaGama would be the one to ask about that.  He was explaining some of that on another post.  I am coming up on my check up and my PSA has come up a little since I've been off Lupron for over a year now.  My doctor mentioned Casodex as something we might try instead of going back on full time Lupron, or we may do Intermitant Lupron Shots.  I had already aggreed to have a Orchiectomy two years ago.  My Chemo Oncologist told me that even with having that surgery, I might have to take Casodex or some other drug to keep the testosterone knocked down. 

You father's concern about muscle mass is understood.  I did lose some muscle mass while on Lupron .  However I kept working out and it wasn't too bad.  Now that my Testosterone is back up, I've gained that muscle mass back plus more.  I've gained 12 pounds of hard, solid muscle in the last year. All my shirts have gotten tighter in the shoulders and arms.  My Dermatologist and Chemo Oncologist have doth commented on the hardness of my muscle during appointmants over the last three months.  It's sort of embarassing since they are both women.  One a former student of mine (dermatologist), and the other (Chemo Oncologist) was also a student in the same high school, but I didn't work with her.  I would say, that a little loss of muscle mass is a small price to pay if you can survive this damn disease. 

Like I said, We are not doctors and all our cases are different.  I can only tell you what I have learned while going through this battle. 

Best of Luck.

Love, Peace and God Bless

Will

bella3
Posts: 25
Joined: Jan 2017

Thank you!  The concern will loss of muscle is that dad is 83 and already very slight.  That with the bone loss made him worry about a fall, etc.  of course, as you say, damned if you do, maybe more damned if you don't.

bella3
Posts: 25
Joined: Jan 2017

The two initial shots in the abdoman would apparently be Firmagon, then a month later starting Lupron. This was seconded by a urologist.  We also talked about waiting to start until he feels symptoms.  The urologist ordered a Ct scan after feeling a very enlarged prostate and the big hard tumor on one side during the dre.  If there is obstruction or worse it will be moot and ht will be started.

bella3
Posts: 25
Joined: Jan 2017

Old salt...thanks again for your 1 month Lupron idea.  No doc ever brought that up but thought it was a good idea when I did.

 

bella3
Posts: 25
Joined: Jan 2017

An update and question...

Dad went from from no symptoms to sudden hip pain and inability to urinate which led to an ER visit for a temporary catheter.  We also learned that his PSA went from 56 to 86 in almost 6 weeks (while taking finesteride).  So, he agreed to start HT.  Two urologists and a prostate oncology specialist said it would be two injections of Firmagon immediately, which he did get, then Lupron in a month.  

Question...thoughts about this protocol? Why not just stay on the Firmagon?  It seems Lupron has a greater number of complaints.  It happened so fast since dad was in pain so I didn't get to ask.  Also, his testosterone was 331 eleven weeks ago.  Should it have been tested again before the firmagon?  Lastly, when can we expect to see both side effects and benefits?  It appears his blood sugar is already up from 130s prior to 230 the day after And so increasing the Prandin.

Thank you kindly.

VascodaGama's picture
VascodaGama
Posts: 2988
Joined: Nov 2010

Bella,

I would think that your dad's doctors are cautious with his other health issues. In fact, both, Firmagon and Lupron will have critical effects in your dad's diabetes and kidney insufficiency. Serum potassium and magnesium levels need to be checked. You need to care for any case of anemia.

Firmagon causes sudden drop in testosterone (it is an antagonist) with no flare. Lupron (is an agonist) takes time to impaired the pituitary signaling system (down regulator) causing flare (increase of testosterone) that can last 3 to 5 days. This flare leads to an explosion in cancer activity which may cause pain at bone joints. Once the patient enters into castration (testosterone <30 ng/dL) the pain subsides. Flare occurs at the first injection only.
HT aims to maintain the patient in castration till refractory sets in. This period can last years so that the maintenance injections can be planned for easiness in administration. Constant monthly injections also cause pain. Firmagon is administered monthly but Lupron is available for several doses (1,3,4 and 6 months).

Please read this on Firmagon effects (Renal Impairment);

https://www.drugs.com/pro/firmagon.html

For Leuprolide (Lupron) interaction with Prandin;

http://drugs.emedtv.com/leuprolide/drug-interactions-with-leuprolide.html

The testosterone test is required periodically to verify continuous castration levels (drug's efficacy). The initial value of 331 is valid. You can get all tests at the same time from the same blood sample (PSA, T, creatinine, Clearance (eGFR), Inogram, etc). I would recommend every two months in the first 6 months and then move to every three months. The PSA should decrease as soon as your dad reaches castration (at three weeks mark).

Best,

VG

 

bella3
Posts: 25
Joined: Jan 2017

Thank you, VG, very much for the information.  We had to chose between two bad options.  He started having severe bone pain and urinary retention caused by "tumors throughout his pelvis" so had to start some sort of HT to shrink (?) those.  The Firmagon seems to have worked quickly after four days...no pain except for minor at the injection sites and return to normal urination.  No side effects yet other than increased glucose.

However, I did not know about the possible renal side effects as per the link you provided (thank you!!). The nephrologist approved Lupron but I never mentioned the one time Firmagon injection before starting the Lupron.  I sent a part of your link to him to see how we might mitigate the risk or at least monitor more closely.  Not sure what else can be done as an intervention now but hope and pray dad is within the percentage that does not have renal side effects. 

He does get full renal and other blood testing every month currently. If we do continue with the HT, he'll get the 1 month Lupron as a trial as someone here recommended.

Again, thank so much for the useful information.

VascodaGama's picture
VascodaGama
Posts: 2988
Joined: Nov 2010

Bella;

You are welcome. I also think that one month dose GnRH drugs/shots (Firmagon, Lupron, etc) as a starter is recommendable. The following maintenance shots can be for longer periods at the convenience of your dad, however, he can continue with monthly administration to safe guard any unexpected event. If the situation deteriorates you just stop the shots and his condition will return to previous status the soonest (approximately in one month).
Firmagon and Lupron do the same job but differ slightly in terms of side effects. You can check those differences in the comparison table of the link I posted above.

I am glad to read about your dad's improvements. I think that you have choosen well in fighting the bandit with HT means, as that will stop cancer progression, but instead of GnRH drugs you could chose the orchiectomy route too. Orchiectomy will induce permanent hypogonadism (no testosterone) leaving the estrogens in peace. I am not a doctor but from my researches and what I heard, the lack of estrogens (E) would be worse influential in the kidneys than the lack of testosterone (T). A big difference between hormonal drugs (ADT) and orchiectomy is that while the drugs affects both (T and E), orchiectomy affects solo the testosterone. This male hormone is what makes us to feel Good however it is also behind persistent hypertension (maybe my case) and renal ischemic injury.

I recall your comment that your dad worries with the loss of muscle mass that could lead to a fall. Surely HT will affect the muscle and the quality of life, but any treatment he chooses to fight the cancer will affect his present wellbeing. Fatigue, lost of energy is expected to occur and that can be improved with estrogen patches, friendlier to renal issues.

Here are materials on the above for you to read;

http://www.medpagetoday.com/HematologyOncology/ProstateCancer/40508

http://intmed.ro/attach/rjim/2012/rjim212/art04.pdf 

https://www.ncbi.nlm.nih.gov/pubmed/15670785

I would try discussing the above with his oncologist. In any case, you need to be vigilant for any deterioration. I saw many guys going down fast because of anemia condition due to hormonal manipulations.

Best wishes for more improvements.

VGama

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