Lupron Depot shots

JoeMac

I have been on the three month Lupron Depot shots for about 1 year. I have two more years to go. There are a lot of side affects with this stuff, hot flashes, emotion swings, fatigue, bone mass loss, etc. The past few months, I have been blinking my eyes a lot to clear my vision. Some times there is also an ache in both eyes. Anyone have experience like this. Is this a side affect? or just a bi-product of the fatigue?

LarryHN

I only was on Lupron for seven months (have been finished for a little over a month - I only had hot flashes for about months 2 to 4 and no other symptoms - loss of bone mass is a known side effect and part of why I chose a treatment that used hormone therapy as a short term part of the over all treatment

JoeMac

LarryHN said:

I only was on Lupron for seven months (have been finished for a little over a month - I only had hot flashes for about months 2 to 4 and no other symptoms - loss of bone mass is a known side effect and part of why I chose a treatment that used hormone therapy as a short term part of the over all treatment

Aloha LarryHN,
You mentioned that Lupron Depot was a short term part of the over all treatment. My choices were not very easy as both oncologists & the urologist recommended the three year treatment. It has gotten difficult to walk more than a mile due to ache/pain at the injection sites, the hips. My I ask what are the other parts of your over all treatment?
JoeMac

2ndBase

I want you to know that I had a psa of 24 with Gleason of 9 and took only one Lupron shot followed by 40 radiation treatments and have survived 5 years. I was 52 when diagnosed. There is no clear evidence that staying on Lupron continuosly is any better than taking one shot and waiting to see how it goes. You can always start taking it again. I know about the side-effects but mine are manageable (vicodin) and I can walk for an hour or so without a lot of pain. You may want to end your shots. The doctors make money every time you take one and it is you that has to suffer the side-effects. It is your quality of life that really matters and you will survive just as long doing it the way I did. You have to take control of your disease and not let others make decisions that cause you to suffer.

JoeMac

2ndBase said:

I want you to know that I had a psa of 24 with Gleason of 9 and took only one Lupron shot followed by 40 radiation treatments and have survived 5 years. I was 52 when diagnosed. There is no clear evidence that staying on Lupron continuosly is any better than taking one shot and waiting to see how it goes. You can always start taking it again. I know about the side-effects but mine are manageable (vicodin) and I can walk for an hour or so without a lot of pain. You may want to end your shots. The doctors make money every time you take one and it is you that has to suffer the side-effects. It is your quality of life that really matters and you will survive just as long doing it the way I did. You have to take control of your disease and not let others make decisions that cause you to suffer.

Aloha Mark52,
Thank you for your thoughts. Congratulations on your 5 years. That would put you at about 57-58 yrs, I am ten years beyond that. Hope you had/have a job that gave you the time you needed to heal. I agree, I do want to stop the Lupron Depot shots. Cost is not a factor here, as my HMO pays almost all of my medical bills. My Gleason scores were also 8-9, each of 12 biopsy samples were 5% to 70% cancer. Last Sept/Oct, I too had the 39 days of beam radiation. The first ½ was directed at the pelvic cavity. This was bad, by the third week, I quit, told the oncologist, but he talked me into staying and with enough mind & pain meds, we got through it. You indicate that the evidence is not clear about staying with the LD shots. They do make life rough, but I was able to get off the mind & pain meds last November. I have only had a couple of times that I still needed vicodin, but I think that those times were prostatitus, as they followed very closely cysto’s & urethra dilations, and the vicodin really did not stop the attacks of pain. What I’m trying to say here is that my best choice for the good life maybe to continue with the LD shots as the data that my oncologist is reading, suggests that I will live longer. There were no indications of cancer outside the prostate (MRI, CAT, Bone Scan). However, the urologist indicated that I was in the 95 percentile for five year cancer reoccurrence. I definitely want to stick around more than five years. Not considering cancer, life is good, we have a small coffee farm on the Hamakua coast of Hawaii. I still have some plumbing problems, and I need to take it easy with the exercise. This week is the first time I have been able to experience several good nights of sleep. After much discussion with my PCP, I finally got a sleep aid that does put me down for 6 to 7 hours. The plumbing problems were keeping me up every 1 to 2 hours. All this stuff can really slow a person down. Last week, I could hardly do an hour of labor, this week I can work a couple of hours before napping! I am slowly getting better!

JoeMac

JoeMac said:

Aloha Mark52,
Thank you for your thoughts. Congratulations on your 5 years. That would put you at about 57-58 yrs, I am ten years beyond that. Hope you had/have a job that gave you the time you needed to heal. I agree, I do want to stop the Lupron Depot shots. Cost is not a factor here, as my HMO pays almost all of my medical bills. My Gleason scores were also 8-9, each of 12 biopsy samples were 5% to 70% cancer. Last Sept/Oct, I too had the 39 days of beam radiation. The first ½ was directed at the pelvic cavity. This was bad, by the third week, I quit, told the oncologist, but he talked me into staying and with enough mind & pain meds, we got through it. You indicate that the evidence is not clear about staying with the LD shots. They do make life rough, but I was able to get off the mind & pain meds last November. I have only had a couple of times that I still needed vicodin, but I think that those times were prostatitus, as they followed very closely cysto’s & urethra dilations, and the vicodin really did not stop the attacks of pain. What I’m trying to say here is that my best choice for the good life maybe to continue with the LD shots as the data that my oncologist is reading, suggests that I will live longer. There were no indications of cancer outside the prostate (MRI, CAT, Bone Scan). However, the urologist indicated that I was in the 95 percentile for five year cancer reoccurrence. I definitely want to stick around more than five years. Not considering cancer, life is good, we have a small coffee farm on the Hamakua coast of Hawaii. I still have some plumbing problems, and I need to take it easy with the exercise. This week is the first time I have been able to experience several good nights of sleep. After much discussion with my PCP, I finally got a sleep aid that does put me down for 6 to 7 hours. The plumbing problems were keeping me up every 1 to 2 hours. All this stuff can really slow a person down. Last week, I could hardly do an hour of labor, this week I can work a couple of hours before napping! I am slowly getting better!

Saw a new urologist 6-19. He asked why I was here. I said communications with my other uro were not very good, wanted another opinion. He reviewed my case and said "I can't take this case", you need to go back to your uro. I said it was difficult to make the trip to Honolulu and wanted to see a uro here. He said "no", I'm calling your uro doc (his boss, my uro). Very long wait, very emotional, did not take that very well. When he came back, they had struck a deal. He would manage my cancer, the boss (my uro) would tackle the bladder voiding problems. The first thing the new uro did was to take me off the Lupron Depot, after I told him what a pain it was. We are monitoring my lab tests now and in a couple of months. Mean time I am to keep the in-out log and then go to Honolulu to see my old uro again. Wow! I'm off Lupron Depot. Do not know whether this is good or bad. My last PSA was not detectable, and has been for the last five months. Said it would take months for the LD shots to wear off.

AuthorUnknown

I have been on 4-month Lupron Depot injections for just over three years. I have never heard of a "three-year" program -- my doctors unanimously indicated that it was for life. In fact, even after the Lupron failed and my PSA started to rise again, I was advised that to discontinue it would be to see my PSA rise faster.

I had hot flashes and some aggravation of arthritis when I began but no other adverse symptoms. The arthritic aggravation passed. After about 18 months, coincidentally with the cessation of hot flashes, the Lupron failed and my PSA start upward again.

After about 7 months and a referral to a medical oncologist I was put on 150mg daily of Casodex. That brought my PSA down again. Casodex usually only helps in this situation for a couple of months, but I have been on it for almost a full year. In July I will get a new blood workup and find out whether the PSA is stable, still decreasing, or going back up.

Interestingly, the hot flashes began again, coincidentally or not with the dropping of PSA.

I have noticed one other thing that has also coincided with periods of dropping PSA: a peculiar, sour odor from my urine. I have no way of knowing whether it is a metabolite of one of my meds or what, but like the hot flashes, it has only been present while the Lupron or Casodex was bringing my PSA down.

My oncologist told me at my last visit, "This is not in the books," referring to my long term success with Casodex. "I don't know what you're doing, but keep doing it!"

Background: At diagnosis of advanced prostate cancer in 2005 my PSA was about 750. Being on Proscar or Avodart, that should be doubled. Lupron brought it down to 0.2, where it stayed for about a year. In late 2006 it rose to 5.6, then 187, then 850. Again, those numbers should be doubled because, unlike most PC patients, I have continued on Avodart throughout.

After starting on Casodex while continuing Lupron, my PSA came down to 50, then 25. That's a downward trend but with infrequent sampling it's possible it could already have bottomed and started upward between the 50 and 25. I will know in July.

The only possible emotional side effect of Lupron I can possibly identify would be a period last year during which I was very cranky and gave a lot of people a hard time. Whatever brought that on, it has passed.

I have racked my brain for answers to my oncologist's "I don't know what you're doing, but keep doing it" statement. All I can identify is this:

1. I have been on Proscar, then Avodart, since mid-2004. I know that DHT has been reduced or elimiinated because the hair on top of my head regrew, not fully, but significantly. DHT is coming under increasing suspicion as being a bad actor in prostate cancer, and I read that the British Health Service was considering adding Proscar or Avodart to the "cocktail" they provide to aging men, just to reduce the incidence of benign prostate hyperplasia.

2. I try to take aspirin and ibuprofen almost every day, at different times (since ibuprofen cancels the blood-thinning benefit of aspirin if taken in close proximity.

3. I pretty heavily pepper most of my salty-type foods with cayenne pepper. I know this is not enough to come up to the dosage of capsaicin found in a published study to **** prostate cancer, but I like it and maybe it helps.

4. I eat cooked tomato products daily. Another recent published study found that products made from tomato paste and especially powdered tomato may have therapeutic benefit for prostate cancer. I just like several canned convenience foods that happen to be made with tomato paste and eat one or two of them every day.

5. I have been taking 300 mg daily of Co-Q10, but I only began this after my PSA was already dropping on the Casodex regime.

6. I used to drink copious amounts of pomegranate juice, but with no visible effect, and I stopped because I also have diabetes II and the sugar was not helping me.

7. I never had any prostate biopsy. I was told in the late 1970s that biopsies can kill and I resisted it. I was eventually diagnosed by CT-Scan results that made the advanced prostate cancer obvious to my then urologist. I believe that I remain free of metastases to the bones precisely because I never had a biopsy or other surgical intervention. Nor have I had any radiation. Note that you must sign a release before any biopsy, acknowledging that you understand that the procedure may cause cancer to spread in your body if there is cancer present in the area to be biopsied. The prostate is probably the most aggressively biopsied tissue in the human body, with a common biopsy involving 3 sets of six punctures, for a total of 18, and somes people have this more than once. Each puncture, if it penetrates a cancerous region, risks distributing cancer cells along the path of the puncture, through how many layers of tissues involved... three? four? five?

JoeMac

AuthorUnknown said:

I have been on 4-month Lupron Depot injections for just over three years. I have never heard of a "three-year" program -- my doctors unanimously indicated that it was for life. In fact, even after the Lupron failed and my PSA started to rise again, I was advised that to discontinue it would be to see my PSA rise faster.

I had hot flashes and some aggravation of arthritis when I began but no other adverse symptoms. The arthritic aggravation passed. After about 18 months, coincidentally with the cessation of hot flashes, the Lupron failed and my PSA start upward again.

After about 7 months and a referral to a medical oncologist I was put on 150mg daily of Casodex. That brought my PSA down again. Casodex usually only helps in this situation for a couple of months, but I have been on it for almost a full year. In July I will get a new blood workup and find out whether the PSA is stable, still decreasing, or going back up.

Interestingly, the hot flashes began again, coincidentally or not with the dropping of PSA.

I have noticed one other thing that has also coincided with periods of dropping PSA: a peculiar, sour odor from my urine. I have no way of knowing whether it is a metabolite of one of my meds or what, but like the hot flashes, it has only been present while the Lupron or Casodex was bringing my PSA down.

My oncologist told me at my last visit, "This is not in the books," referring to my long term success with Casodex. "I don't know what you're doing, but keep doing it!"

Background: At diagnosis of advanced prostate cancer in 2005 my PSA was about 750. Being on Proscar or Avodart, that should be doubled. Lupron brought it down to 0.2, where it stayed for about a year. In late 2006 it rose to 5.6, then 187, then 850. Again, those numbers should be doubled because, unlike most PC patients, I have continued on Avodart throughout.

After starting on Casodex while continuing Lupron, my PSA came down to 50, then 25. That's a downward trend but with infrequent sampling it's possible it could already have bottomed and started upward between the 50 and 25. I will know in July.

The only possible emotional side effect of Lupron I can possibly identify would be a period last year during which I was very cranky and gave a lot of people a hard time. Whatever brought that on, it has passed.

I have racked my brain for answers to my oncologist's "I don't know what you're doing, but keep doing it" statement. All I can identify is this:

1. I have been on Proscar, then Avodart, since mid-2004. I know that DHT has been reduced or elimiinated because the hair on top of my head regrew, not fully, but significantly. DHT is coming under increasing suspicion as being a bad actor in prostate cancer, and I read that the British Health Service was considering adding Proscar or Avodart to the "cocktail" they provide to aging men, just to reduce the incidence of benign prostate hyperplasia.

2. I try to take aspirin and ibuprofen almost every day, at different times (since ibuprofen cancels the blood-thinning benefit of aspirin if taken in close proximity.

3. I pretty heavily pepper most of my salty-type foods with cayenne pepper. I know this is not enough to come up to the dosage of capsaicin found in a published study to **** prostate cancer, but I like it and maybe it helps.

4. I eat cooked tomato products daily. Another recent published study found that products made from tomato paste and especially powdered tomato may have therapeutic benefit for prostate cancer. I just like several canned convenience foods that happen to be made with tomato paste and eat one or two of them every day.

5. I have been taking 300 mg daily of Co-Q10, but I only began this after my PSA was already dropping on the Casodex regime.

6. I used to drink copious amounts of pomegranate juice, but with no visible effect, and I stopped because I also have diabetes II and the sugar was not helping me.

7. I never had any prostate biopsy. I was told in the late 1970s that biopsies can kill and I resisted it. I was eventually diagnosed by CT-Scan results that made the advanced prostate cancer obvious to my then urologist. I believe that I remain free of metastases to the bones precisely because I never had a biopsy or other surgical intervention. Nor have I had any radiation. Note that you must sign a release before any biopsy, acknowledging that you understand that the procedure may cause cancer to spread in your body if there is cancer present in the area to be biopsied. The prostate is probably the most aggressively biopsied tissue in the human body, with a common biopsy involving 3 sets of six punctures, for a total of 18, and somes people have this more than once. Each puncture, if it penetrates a cancerous region, risks distributing cancer cells along the path of the puncture, through how many layers of tissues involved... three? four? five?

Aloha Lupronized,
Wow! You have presented a lot of new information, Thank You,
JoeMac

JoeMac

AuthorUnknown said:

I have been on 4-month Lupron Depot injections for just over three years. I have never heard of a "three-year" program -- my doctors unanimously indicated that it was for life. In fact, even after the Lupron failed and my PSA started to rise again, I was advised that to discontinue it would be to see my PSA rise faster.

I had hot flashes and some aggravation of arthritis when I began but no other adverse symptoms. The arthritic aggravation passed. After about 18 months, coincidentally with the cessation of hot flashes, the Lupron failed and my PSA start upward again.

After about 7 months and a referral to a medical oncologist I was put on 150mg daily of Casodex. That brought my PSA down again. Casodex usually only helps in this situation for a couple of months, but I have been on it for almost a full year. In July I will get a new blood workup and find out whether the PSA is stable, still decreasing, or going back up.

Interestingly, the hot flashes began again, coincidentally or not with the dropping of PSA.

I have noticed one other thing that has also coincided with periods of dropping PSA: a peculiar, sour odor from my urine. I have no way of knowing whether it is a metabolite of one of my meds or what, but like the hot flashes, it has only been present while the Lupron or Casodex was bringing my PSA down.

My oncologist told me at my last visit, "This is not in the books," referring to my long term success with Casodex. "I don't know what you're doing, but keep doing it!"

Background: At diagnosis of advanced prostate cancer in 2005 my PSA was about 750. Being on Proscar or Avodart, that should be doubled. Lupron brought it down to 0.2, where it stayed for about a year. In late 2006 it rose to 5.6, then 187, then 850. Again, those numbers should be doubled because, unlike most PC patients, I have continued on Avodart throughout.

After starting on Casodex while continuing Lupron, my PSA came down to 50, then 25. That's a downward trend but with infrequent sampling it's possible it could already have bottomed and started upward between the 50 and 25. I will know in July.

The only possible emotional side effect of Lupron I can possibly identify would be a period last year during which I was very cranky and gave a lot of people a hard time. Whatever brought that on, it has passed.

I have racked my brain for answers to my oncologist's "I don't know what you're doing, but keep doing it" statement. All I can identify is this:

1. I have been on Proscar, then Avodart, since mid-2004. I know that DHT has been reduced or elimiinated because the hair on top of my head regrew, not fully, but significantly. DHT is coming under increasing suspicion as being a bad actor in prostate cancer, and I read that the British Health Service was considering adding Proscar or Avodart to the "cocktail" they provide to aging men, just to reduce the incidence of benign prostate hyperplasia.

2. I try to take aspirin and ibuprofen almost every day, at different times (since ibuprofen cancels the blood-thinning benefit of aspirin if taken in close proximity.

3. I pretty heavily pepper most of my salty-type foods with cayenne pepper. I know this is not enough to come up to the dosage of capsaicin found in a published study to **** prostate cancer, but I like it and maybe it helps.

4. I eat cooked tomato products daily. Another recent published study found that products made from tomato paste and especially powdered tomato may have therapeutic benefit for prostate cancer. I just like several canned convenience foods that happen to be made with tomato paste and eat one or two of them every day.

5. I have been taking 300 mg daily of Co-Q10, but I only began this after my PSA was already dropping on the Casodex regime.

6. I used to drink copious amounts of pomegranate juice, but with no visible effect, and I stopped because I also have diabetes II and the sugar was not helping me.

7. I never had any prostate biopsy. I was told in the late 1970s that biopsies can kill and I resisted it. I was eventually diagnosed by CT-Scan results that made the advanced prostate cancer obvious to my then urologist. I believe that I remain free of metastases to the bones precisely because I never had a biopsy or other surgical intervention. Nor have I had any radiation. Note that you must sign a release before any biopsy, acknowledging that you understand that the procedure may cause cancer to spread in your body if there is cancer present in the area to be biopsied. The prostate is probably the most aggressively biopsied tissue in the human body, with a common biopsy involving 3 sets of six punctures, for a total of 18, and somes people have this more than once. Each puncture, if it penetrates a cancerous region, risks distributing cancer cells along the path of the puncture, through how many layers of tissues involved... three? four? five?

Aloha Lupronized,
We all are related only by the fact that we have cancer. All other comparisons do not carry much weight as so much is dependent on life styles and who your parents were. I have a high school buddy, who has elevated PSA, and has been biopsyed 40? times, still no sign of cancer. He does have an enlarged prostate and controls it somewhat like you do. Some drugs work, others do not. The CT probably is definitive. Anyway to tell how much of the prostate is cancer? Hope you can work it out. I am finally seeing a blurry, dim light at the end of a very long & painful road (8 months since EBRT).
Best of luck to you,
JoeMac 66 Hamakua Coast Big Island

petrogc

JoeMac said:

Aloha Lupronized,
We all are related only by the fact that we have cancer. All other comparisons do not carry much weight as so much is dependent on life styles and who your parents were. I have a high school buddy, who has elevated PSA, and has been biopsyed 40? times, still no sign of cancer. He does have an enlarged prostate and controls it somewhat like you do. Some drugs work, others do not. The CT probably is definitive. Anyway to tell how much of the prostate is cancer? Hope you can work it out. I am finally seeing a blurry, dim light at the end of a very long & painful road (8 months since EBRT).
Best of luck to you,
JoeMac 66 Hamakua Coast Big Island

what to do?
my boyfriend had his prostate removed and they recommened the 6 month lupron shot. he has a 9 gleason score. His psa level has been at 0 post surgery and help with the lupron shot, however, today he received the results from his post 6 month lupron shot and found out that his psa has rose to .10. Very emotional about the results because we dont know whats going to happen from this point. The side effects of the lupron shot are so intense that I worry if he will choose that route again. What happens now? Is it normal for the psa to rise post lupron injection? I know that we will need to discuss this with the doctor, but the doctor never called us with the results, we called them. any suggestions out there?

teacherdude

JoeMac said:

Aloha Mark52,
Thank you for your thoughts. Congratulations on your 5 years. That would put you at about 57-58 yrs, I am ten years beyond that. Hope you had/have a job that gave you the time you needed to heal. I agree, I do want to stop the Lupron Depot shots. Cost is not a factor here, as my HMO pays almost all of my medical bills. My Gleason scores were also 8-9, each of 12 biopsy samples were 5% to 70% cancer. Last Sept/Oct, I too had the 39 days of beam radiation. The first ½ was directed at the pelvic cavity. This was bad, by the third week, I quit, told the oncologist, but he talked me into staying and with enough mind & pain meds, we got through it. You indicate that the evidence is not clear about staying with the LD shots. They do make life rough, but I was able to get off the mind & pain meds last November. I have only had a couple of times that I still needed vicodin, but I think that those times were prostatitus, as they followed very closely cysto’s & urethra dilations, and the vicodin really did not stop the attacks of pain. What I’m trying to say here is that my best choice for the good life maybe to continue with the LD shots as the data that my oncologist is reading, suggests that I will live longer. There were no indications of cancer outside the prostate (MRI, CAT, Bone Scan). However, the urologist indicated that I was in the 95 percentile for five year cancer reoccurrence. I definitely want to stick around more than five years. Not considering cancer, life is good, we have a small coffee farm on the Hamakua coast of Hawaii. I still have some plumbing problems, and I need to take it easy with the exercise. This week is the first time I have been able to experience several good nights of sleep. After much discussion with my PCP, I finally got a sleep aid that does put me down for 6 to 7 hours. The plumbing problems were keeping me up every 1 to 2 hours. All this stuff can really slow a person down. Last week, I could hardly do an hour of labor, this week I can work a couple of hours before napping! I am slowly getting better!

How are you doing now

In 2015, dec, had Gleason 9, T2c, 25 external rad, 2 HDR treatments with lupron starting 2 months before rad and continuing for 3 full yrs. 22 months to go.  only side effects - hot flashes (no big deal),some weight gain, moods.

Dr says 93% chance of reocurrence in 10 yrs.