Leery of Lupron - Please Help!

ob66

jojo72455 said:

Lupron side effects
If you do not have a female partner then the side effects you mentioned are enough. If you do have a partner, remember that the other serious side effect is loss of libido. The urologists and oncologists act as though this does not matter, but they are wrong. I am the wife of a chemically castrated male and my life has become pretty miserable. I take antidepressants now to get through the days. I am committed to getting him to the end of this miserable disease but it is not an easy task.

Jojo concern

     It has been a horror story for my wife. Lupron, changing her menu to an Asian/Med diet, worried about her spouse dying and what it means to her, not to mention her love and support. With you it is a narcisstic worry about which antidepressant to take today. Poor you. I would never wish CA upon you or anyone else. Reach back and try to find some compassion (doesn't come in a prescription).

ralph.townsend1

ob66 said:

Leary II
Just over one year ago today, I was put on lupron. If you look back on this thread and others that predated April 2010, I read everything I could. For, I was getting lupron on April 12, 2010 and then climbing on an airplane two days later. These threads, earnest as they were, scared the living daylights out of me. Should I cancel my 3 week cruise, etc.????

Well in my case, nothing happened. Well, I have to admit to a little injection site pain for two to three days. That was it. Period. Yeh, I was probably lucky, but it can be that way. So now it is one year later, and I get lupron every 4 months. Just had an injection yesterday morning, played golf immediately after (lousy score blamed on lupron) and then came home and sat on a heating pad at my computer for an hour or so. Little discomfort last night. Nothing today. It can be OK.

Oh yes, I failed to mention the hot flashes. They are a part of your life. I visit my feminine side about 7-10 times a day/night. My expenditure to have a 0.01 PSA for over a year.
But I look at hot flashes as my down payment on what I call my "Lupron Vacation"---meaning no worry about PSA for two years. When you have a post of 8.0 Gleason, you do what you need to do to avoid recurrence. Ain't so bad. Hope this helps.

Bull

Lupron I have been on since May of 2010 and the effect have been very low or good. If a group of doctor's at MD Anderson cancer center thinks it's good, i would think I it's good.

I think you should look to Zytiga + predisone and Lupron as your answer. Now for a year or 13 months the PSA is >1 or 0.7 psa and my tumor's have stay the same size.

 

Good luck

Ralph

butteguy

LUPRON TREATMENTS FOR PROSTRATE CANCER

I had the surgery followed by 44 radiation treatments in2007 due to very high PSA  and Gleeson score. I managed for about one year then the Psa started to rise again so my physician put me on Luprin.  I was advised of the side effects.  Hot flashes were minimal and only lasted a short while, loss of Libido was evident but allowed for new relationships based on a higher plain. The difficulty I have is the significant loss of strength and stamina.  However, at 72 some of that is natural.  All I know is that my life has been extended and no recurrence of the high PSA.  Of course the cancer is still there but manageable. They have no idea how long I have but one fellow had lasted 6 years and still gong strong on it.

coogamooga

2ndBase said:

Lupron
Lupron and other such hormonal treatments are a viable alternative to doing nothing, however there is absolutely no evidence that using these increases the life span by any significant measure. If you do not care about your quality of life then take all the shots and deal with the side-effects, if you want a better quality of life do not take the shots. I choose the latter and can say with complete certainty that I made the right choice for me.

Stuck between a hard place an a rock

I was diagnosed with PC about six years ago had a biopsy and showed only one section as cancerous out of 12 if I recall right it was a 6 gleeson. I decided to take the  wait and see approach..my PSA remained between 4 and 5 for five years when it jumped to an eight. This biopsy showed a gleeson 7 and 8 in 11 of the the 12 snips..Scans showed no bone cancer. I went for 45 treatments of radiation with very little side effects. Then I went on Lupron and have experienced more than moderate pain in my joint back and legs... Not all the time. I can tolerate the hot flashes but the pain is troubling... any suggestions..or comments appreciated I am scheduled for next injection in two weeks

Gleason 9

coogamooga said:

Stuck between a hard place an a rock

I was diagnosed with PC about six years ago had a biopsy and showed only one section as cancerous out of 12 if I recall right it was a 6 gleeson. I decided to take the  wait and see approach..my PSA remained between 4 and 5 for five years when it jumped to an eight. This biopsy showed a gleeson 7 and 8 in 11 of the the 12 snips..Scans showed no bone cancer. I went for 45 treatments of radiation with very little side effects. Then I went on Lupron and have experienced more than moderate pain in my joint back and legs... Not all the time. I can tolerate the hot flashes but the pain is troubling... any suggestions..or comments appreciated I am scheduled for next injection in two weeks

To Coogamooga: Lupron + Estrogen may help reduce hot flashes

There are so many hard decisions that have to be made in fighting cancer. I hope my experience and thoughts here will stimulate some ideas for you.

Background: Mixed in, and around, my other treatments (RP, IMRT, Chemo & a nuclear med clinical trial: Lu177 w J591), I've been getting hormone therapy (lupron w casodex then switched to firmagon, then to lupron with casodx again, then lupron alone to washout casodex, then lupron w ketoconazole, now lupron + ketoconazole + estrogen) for about 3 years. And they have helped control PSA growth.

The hot flashes can be so uncomfortable it can drive you crazy, but they do let off in between events. Being around others when a hot flash hits ends up with people watching you sweat and turn red, thinking you're A) about to keel over or are very nervous for some reason. I have discovered that Estrogen patches greatly reduce the frequency and severity of hot flashes. Estrogen has its own set of side effects, but that trade-off , for me, is doubly worth taking the Estrogen since it also seems to be slowing my PSA doubling time.

I have found no good relief for the hormone related back pain but NSAIDs help. I attribute much  of my joint pain to arthritis, but the HT may be adding to that as well. In any event, the back and joint pain are uncomfortable and limiting in their own right, but are not "deal killers" for me.

The other significant side effects for me are impotence (forget Viagra etc, they don't seem to help at all), constant fatigue (I fall asleep every afternoon), and noticeably reduced cognitive function (It took me over 4 hours just to write this and spell check it using Word, I keep getting side tracked and writing stuff that doesn't matter).

Anyway, my initial response to each of the combined therapies (lupron + X) has shown at least some positive response for me. Without any active hormone treatments my PSA doubling times drop from an average of 90 days (with treatment) all the way down to 30 days or less without HT, so the trade off for me is a no brainer, at least for the time being.

Best of luck to you,

G9

 

klinefinancial

butteguy said:

LUPRON TREATMENTS FOR PROSTRATE CANCER

I had the surgery followed by 44 radiation treatments in2007 due to very high PSA  and Gleeson score. I managed for about one year then the Psa started to rise again so my physician put me on Luprin.  I was advised of the side effects.  Hot flashes were minimal and only lasted a short while, loss of Libido was evident but allowed for new relationships based on a higher plain. The difficulty I have is the significant loss of strength and stamina.  However, at 72 some of that is natural.  All I know is that my life has been extended and no recurrence of the high PSA.  Of course the cancer is still there but manageable. They have no idea how long I have but one fellow had lasted 6 years and still gong strong on it.

LUPRON

Lupron is a nightmare....the docs talk jokingly about hot flashes and women love that you experience what they do in menapause but that's just the tip of the iceberg and the side affects are cumulative...........I was on intermittent hormone blockade for 6 years and then on constant blockade for 6 years......I think the quality of life on lupron and castration drug combos are just not worth whatever extension of life you might get.....if i had to do it again I would do no treatment and live the fullest life.....

I am now off everything for 2 months and not going to do any more treatments....my psa is stable at 199....I have no pain or discomfort from the cancer.... but here is the total list of lupron side effects so you know what the trade off REALLY is.

1.  Hot flashes and irritability

2.  Weight gain and loss of muscle mass and strength

3.  Short term memory loss and loss of brain function - I could no longer function in my financial services business

4.  Loss of libido and penis shrinks to about 1/2 the size or less

5.  FATIGUE FATIGUE FATIGUE....that leads to depression 

6.  Extremely long recovery process and may never get testosteone back

7.  All body hair except beard and hair disappears

8.  Did I say IRRITABILITY

9.  Then along with the lupron you will get a whole passel of other drugs like casodex, nilandron, DES, dexamethasone, prednisone, aberaterone, ketoconozale..... etc etc etc....and they all suck too....

10.   So my advice is make peace with your life and enjoy what there is while you can live it fully instead as a castrata.....

 

 

 

outraged

getreal1 said:

Lupron side effects

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Verbal abuse is a volation of CSN terms & conditions.

Sorry I had to read such an nasty insensitive attack

I came looking for some info on the efffects of Eligard when I came accross what is supposed to be a cancer forum where I thought those who are affected by this disease would be able to express their concerns or anguish without fear of retribution. It is beyond my comprehension why a woman who comes and expresses her sense of loss or loneliness at the loss of her ability to share intimacy with her partner is set upon and accused of being a self centred narcisist. I too know the lonliness and sense of loosing a bond and connection with my partner due to cancer treatment and the lonliness of sharing the same bed with a man who once connected with me on a sexual level and who enjoyed my sexuality to lying awake listening to that same man snoring away next to me knowing that he has pretty much lost his understanding of what we used to have and that I am now alone and that the sexuality that once bonded us is now my private torment. Its 3am in the morning but I have been too upset to sleep seeing another partner of a prostate cancer patient and recipient of hormone treatment set upon by people because she has not been able to just supress her own sexuality in response to her partners medical condition. Might I suggest that as far as I am aware the reason men and women form partnerships and become couples is because of their sexuality. I know that if I were in a relationship not based on.mine and my partners shared sexuality I would probably be in a relationship with a woman as I have not met too many men who were into shoe shopping and interior decorating. Lying next to a partner night after night who no longer wants you as he once wanted you is painfull and lonely enough...yes there is a medical reason but it doesnt make you feel less lonely when you cant even explain it too him. But to launch an attack and lash out at someone for expressing their emotional pain just because they arent the one with the physical pain is narrow minded self righteous and utterly pathetic Given they no doubt submitted their post in the hope for some understanding on a thread about the subject it is you who call her a self centred narsicist who should hang your heads in shame. My heart goes out to you Jojo I miss the man who used to want the woman I am too.  I hope that if my partner is lucky enough to recover from the cancer that he is also lucky enough to recover from the treatment and I can have the same man with the same personality back in my life. I might get neither but I hope for both and if its narcisistic to feel pain as I feel cancer taking him away from me piece by piece then I must proclaim myself as much a narsicist as anyone else who would feel pain at the prospect of loosing their partner.

Karen

PS please forgive grammatical errors..written on mobile phone in the dark in early hours of  the morning of a sleepless night.

Rakendra

Wow!!!

In Buddhism two of the terms are Wrong Thought and Right Thought.  When I read many of these posts, Wrong Thought came to mind.  Pca is NOT about dying, it is about LIVING.  What nonsense about when the day is coming, 6 months, two years, today, never!!!  It is coming and you are one of the lucky ones who has definite advance notice that it is time to take total control of your life NOW and get on with the work you came here to do.  Yes, life will not be the same as not having Pca, but THAT is the message!!!  You are on notice that old ways of thinking, old ways of being, and taking things for granted aint gonna work anymore.  The New Way is being in the moment, accepting what you are being given (without judgment) and being grateful for the experience, even if you do not like what you are being given in the moment!!! 

   My experience is that I was given everything at birth.  Wealth, 6’2” blonde, handsome, athletic.  But also I was give inferiority complex, manic depression, and everyone in my family and my first wife’s family is alcoholic.  And I found that the gifts that had the most value were the alcoholism and mental diseases.  These gifts are what produced the movement that changed my life.  I learned to give up (release) the wealth, the desires, the cars, the toys, the women, the jewelry, the ego and all the other  garbage that I was so sure was going to make me happy.  Now I own nothing, not a car, not a cell phone, nothing.  Money has no meaning whatsoever except for food and shelter.  You see, life is not about GETTING it is about giving up or releasing.

  So the Truth is that the more you give up the more you get, but not in the way most think.  About passing.  Passing is releasing life, it is about the ultimate give up.  I look forward to passing because in my life, without question, I have received huge reward for each thing I gave up or released. 

This is the lesson of Existence. You are not here to get, you are here to give – LOVE.  Now, when I release life, there is no question that this ultimate release will also have the ultimate reward.  Nobody knows what that is, but I will guarantee that it will be a huge step forward and a great gift.

   Time is the invention of man to measure.  In the universe, time does not exist.  There is simply Isness that is eternal.  Why measure what is happening by time?  Read The Short Happy Life of Francis Macomber by Hemmingway if you want to understand time and its relationship to man.  In other words it makes NO difference how much time is left.  What makes the difference is what you do in each second in each here and now instant to create love for yourself and all your brothers and sisters of mankind.  You are on notice that time is of great value now and the opportunity to create your new life is limited.  You want to know what to do?  They moved my spirituality post to that section.  This may not be your path, but it is not a bad place to start.

  If you have any doubts about what I say or how I live, can you think of any way that offers Better Thought or Better Life?

 

Always Living Love All Ways.  Swami Rakendra

outraged

on the lighter side

Come on guys what in the world is a hot flash?...the english definition of a flash refers to a sudden brief burst of bright light...what are you talking about with flash a lightening bolt or a bright idea or something?. It s a "hot flush" refering to the a reddening of the face, skin, etc., typically caused by illness or strong emotion....the way you guys transcribe the queen's english is a constant source of amusement!

ladyscout

My friend has been on Lupron

My friend has been on Lupron for 18 months and his PSA went from 1600 (not a typo error) down to 1 in about 4 months.  It stayed low for about 14 months.  It is now back on the rise and he is still getting the shots every month but is on different pills.  He had not side effects except for hot flashes.

yamobedeh

Lupron and other LHRH meds, and Other Issues

I was diagnosed in Canada with stage 2c PCa, Gleason 8 in Late 2016. That Dx was upgraded to stage 4 in Feb 2017 when scans showed a metastasis on a femur head. I was on Casodex for 5 weeks, then got a Lupron (LHRH) shot and aside from the usual side effects (hot flashes, fatigue etc) I developed an allergy; very itchy skin rash and eventually excema. That was the only treatment I was offered at the time, with EBRT possibly after 3-6 months. I was declined for brachytherapy, likely because of the stage 4 Dx. A friend in my PCa network with stage 3 PCa was offered EBRT with brachyTx at the same hospital, so it's obvious why I was excluded. After receiving different and essentially opposite Tx plans from 2 radiation oncologists, I went through with the treatment I had booked 3 months earlier at Dattoli Cancer Center in Sarasota, FL. As I was due to have another LHRH shot, I opted for Zoladex, hoping to avoid the allergic reaction, which occurred again. They had sent me recommendations for numerous scrips, which I filled and brought with me. One was for estrogen patches, which eliminated the hot flashes; I've had none since. Other scrips included metformin for its anti-tumor FX, which was part of a comprehensive scrip, diet and lifestyle approach to maximize patient chances for a best outcome, if not a cure. I'm trying to put my various resentments about my early treatment aside, but the decisions of the first oncologists to offer me limited treatment options could have drastically limited my outcome possibilities. I feel this was a minimal palliative care plan, even though I was not offered any prognosis, aside from the fact that my case does not have an optimistic trajectory. My decision to look elsewhere at least offered treatment with curative intent. It cost me in the high 5 figures, whereas my friend's more comprehensive treatment is fully covered under government health insurance. I'm hoping that at the very least, my investment in aggressive fairly early intervention will provide me more time and better quality of life. I will ask my new oncologist to try me on Trelstar, in hopes of reduced side FX. 

 

RE: chronic/recuuring UTIs, I was given Cipro for a month in response to rising PSA and UTI symptoms, and I had had BHP for several years. The Cipro reduced PSA and symptoms the first time, but not after that. I am one of many who attribute subsequent peripheral nerve damage to being on Cipro. I later paid for an expensive DNA culture test which confirmed I had ureaplasma, which is virtually never investigated, even by urologists. I wish I had known than what I have learned since, about diagnosing PCa early: When my PSA hit 10 last year, with a free testosterone component of around 12%, and urinary symptoms had been present for maybe 2 years, my urologist booked me for a TRUS biopsy. After my research indicated the 65% accuracy (35% inaccuracy) of the test, I paid for an MRI, (because no doc would requesition one) which confirmed a large tumor in the prostate, which I learned later had likely metastasised to my femur. I underwent a targeted TRUS biopsy which confirmed the Gleason 8 status. Another friend in my network had 3 negative TRUS bioopsies, and after persistent increasing PSA, a saturation biopsy via perineum finally gave significant positive Dx. 

 

Grinder

Cipro

I had the same problem with Cipro. The first time prostatitis with accompanying UTI flared up from a staph infection in 2003, I was given a different antibiotic, but do not remember the name, but it cleared up in a matter of days. Each subsequent time the infection flared up,which meant a trip to the ER and a Foley catheter, I was given cipro, which took one to two weeks, required abstinence from all dairy, turned my tongue black, and gave me increasing and permanent neuropathy in the ends of my feet. Each time I had to take it, the size of the affected area would increase until I stopped any further cipro prescriptions. Two others were tried more successfully, enough to inhibit the infection and reduce the size/weight of the prostate to a manageable 250cc when taking Flomax and Cialis daily to urinate at all (barely). By the time of my RP, my prostate was down to 197cc in weight, and easier for the surgeon to remove. Bactrium and Levaquin did not increase the neuropathy, even though Levaquin is in the same class of antibio as Cipro. Don't know why, it is what it is.