Leery of Lupron - Please Help!

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.

     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).

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 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

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

getreal1 said:

Lupron side effects

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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.

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!

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.