Elegard Injections

Rickey001
Rickey001 Member Posts: 4

My cancer was found in 12.2011. Although my PSA was low(2.4) my Gleason was high,9 of 10(5+4) and It was considered an aggressive form of cancer. The tumor was confined to the right side of my prostate. My doctor recommended direct radiation treatments which consisted of 45 treatments from 12/2011 to the end of Feb.,2012. I received my first Elegard injection in December ,2011. So far I've had 4 injections. I'm due for the next one later this month.( I get the injections every 4 months)

The side affects I have experience include:hot flashes, fatique, sweats,depression, moodyness and a loss of libido. My question centers around the length of treatment. My doctor is vague about how many injections I will need. She says it could be typically 2+ years or then it could be less or longer. I go to talk with her about loss of libido and when can the injections be stopped.She says the shots are needed to keep me alive, which I can dig. Apparently there is no prescribed formula to go by to determine how long treatment is needed. This I can't dig, and is very frustrating. Meanwhile my regular PSA's have been as low as one can be(Smile. Use left and right arrows to navigate. ).

So, has anyone completed their Elegard treatments? If so, did your libido return? Did the fatique, depression and moodyness eventually go away? I just want to feel something like my old self again, if that is possible..I'm 71 but prior to my cancer treatments, I had not experienced any appreciable loss of libido. I would get tired but it wasn't like the fatique I am experienceing since the Elegard shots began.

Dont get me wrong, i am thankful for the treatments, which saved my life. It's just the quality of life has sunk kinda low..

Anyway, I apologize if this is getting too personal..I'm new on here..

Thanks..

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    No reason to be "vague" on the number of shots

    Rickey

    Welcome to the board.

    You do not have to apologize for being so personal. In this forum you will find a bunch of survivors ready to help you with opinions based on their experiences with the disease and treatment.

    I am an Eligard survivor too. I do understand your feelings particularly about the fatigue and the loss of libido. They were the two effects that affected me the most.
    The third one was the frequency in peeing during the night and the fourth was the rheumatic-like pain in my joints, (which I found to be an additional side effect only after recuperating from the hypogonadism status).

    Your case is different than mine. Your diagnosis, treatment and future protocol will be different too. In any case, I do not see the reason for your doctor being vague in the number of shots. There are loads of information on HT protocols and steps to take when some fail.

    You have not shared much about your history with the disease (diagnosis) but Gleason pattern of 5 is the highest in aggressivity. So far Eligard has done well in holding your cancer, but to do so you have to endure the effects and accept them into your life. Hormonal therapy is not like a “walk in the park”. Some guys do better than others and in some the effects are mild. In whole, this is the price to pay to get a control in the spread of the cancer.

    I do not know the details of the protocol recommended by your doctor but in aggressive cases famous oncologists recommend double or triple blockades, done with several drugs at the same time.
    The hormonal treatment resumes in blocking androgens from being absorbed by the cancer. These are the “foods” that promote the duplication and spread of cancer cells. Eligard prevents the testes from “making” testosterone (causing castration). Another blockade is done at the cells’ androgen receptors with antiandrogens (sticky bio-structures glued to the ARs (mouth) of the cells).
    Hypogonadism is what causes the majority of the symptoms one experience. Stopping the condition will cause the body to recuperate to normalcy but it will also cause the cancer to “wakeup”.

    Some doctors recommend continuous administration of the drugs and some do it intermittently. In my case I am on intermittent androgen deprivation therapy (IADT). This will allow me to recover from the symptoms and return to the libido world. I am now enjoying my first “vacation from drugs” (no medication period) with normal levels of testosterone circulating in my body. But soon I will have to re-start HT because the cancer is also enjoying the free ride on testosterone frenzy. I know it but it does not worry me.

    You can read my story in these links;

    http://csn.cancer.org/node/236528
    http://csn.cancer.org/node/244938
    http://csn.cancer.org/node/253261

     Here is a book recommended for cases similar to yours;
    “Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers.

    Physical fitness, diet and a change in live tactics become important to counter the treatment effects. UCSF got a publication on Nutrition & Prostate Cancer, which copy I recommend you to get from this link;
    http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

     

    Best wishes for full control on the cancer and side effects.

    VGama  Wink

  • Rickey001
    Rickey001 Member Posts: 4

    No reason to be "vague" on the number of shots

    Rickey

    Welcome to the board.

    You do not have to apologize for being so personal. In this forum you will find a bunch of survivors ready to help you with opinions based on their experiences with the disease and treatment.

    I am an Eligard survivor too. I do understand your feelings particularly about the fatigue and the loss of libido. They were the two effects that affected me the most.
    The third one was the frequency in peeing during the night and the fourth was the rheumatic-like pain in my joints, (which I found to be an additional side effect only after recuperating from the hypogonadism status).

    Your case is different than mine. Your diagnosis, treatment and future protocol will be different too. In any case, I do not see the reason for your doctor being vague in the number of shots. There are loads of information on HT protocols and steps to take when some fail.

    You have not shared much about your history with the disease (diagnosis) but Gleason pattern of 5 is the highest in aggressivity. So far Eligard has done well in holding your cancer, but to do so you have to endure the effects and accept them into your life. Hormonal therapy is not like a “walk in the park”. Some guys do better than others and in some the effects are mild. In whole, this is the price to pay to get a control in the spread of the cancer.

    I do not know the details of the protocol recommended by your doctor but in aggressive cases famous oncologists recommend double or triple blockades, done with several drugs at the same time.
    The hormonal treatment resumes in blocking androgens from being absorbed by the cancer. These are the “foods” that promote the duplication and spread of cancer cells. Eligard prevents the testes from “making” testosterone (causing castration). Another blockade is done at the cells’ androgen receptors with antiandrogens (sticky bio-structures glued to the ARs (mouth) of the cells).
    Hypogonadism is what causes the majority of the symptoms one experience. Stopping the condition will cause the body to recuperate to normalcy but it will also cause the cancer to “wakeup”.

    Some doctors recommend continuous administration of the drugs and some do it intermittently. In my case I am on intermittent androgen deprivation therapy (IADT). This will allow me to recover from the symptoms and return to the libido world. I am now enjoying my first “vacation from drugs” (no medication period) with normal levels of testosterone circulating in my body. But soon I will have to re-start HT because the cancer is also enjoying the free ride on testosterone frenzy. I know it but it does not worry me.

    You can read my story in these links;

    http://csn.cancer.org/node/236528
    http://csn.cancer.org/node/244938
    http://csn.cancer.org/node/253261

     Here is a book recommended for cases similar to yours;
    “Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers.

    Physical fitness, diet and a change in live tactics become important to counter the treatment effects. UCSF got a publication on Nutrition & Prostate Cancer, which copy I recommend you to get from this link;
    http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

     

    Best wishes for full control on the cancer and side effects.

    VGama  Wink

    Vgama:thank you for your response

    VGama:  Thank you for your reply. I appreciate it. I am on intermittant ADT therapy. My doctor estimates at least two years of injections though she isn't specific as to a cut off date. I do appreciate your encouragement about hanging in. I have to hope that after I eventually complete the injections  I will return to some normalcy in my life.(I'll aim for  a"vacation from drugs:) It is good to be able to find a place to talk and to get reasonable explanations about my concerns. I'll add more later about my experience leading up to my diagnosis, etc. I expect I will have more questions to ask and more concerns as  I travel the road to recovery.

     

    I read your story link, and am glad you have done well!

    Rickey

  • bellisimo
    bellisimo Member Posts: 1
    Eligard Injections

    Hi Rickey,

     

    I’m new to the board and have just completed a treatment of 1 month of Casodex and two 4-month injections of Leuprolide Acetate (Eligard).

     

    My doctors at the Cancer Clinic I’m being treated at have never mentioned anything about Gleason.  They have only shown me the results of my PSA numbers.

     

    I’m 74, by the way, and I was first treated about 8 years ago with radiation as my cancer was confined to the prostate only.  Prior to radiation my PSA number was 17.  That’s when my urologist decided it was time to biopsy my prostate and, of course, the biopsy found the cancer.

     

    After 2 weeks of radiation my PSA had dropped from 17 to just above 1.  My doctor said we would keep a close watch on things with blood work every 6 months.  Nine months ago my PSA had gradually risen from 1 to 12 and they decided to treat me with the Eligard starting first with 1 month of Casodex and then two 4-month injections of Eligard.

     

    The next time I had blood work done and saw my doctor at the cancer clinic was just a week after my second 4-month injection of the Eligard.  The results showed my cancer to be undetectable.  I was a bit annoyed that I had needed to take the second injection because it seemed to me that my cancer was probably undetectable before I had it.

     

    All I’ve been told about my prostate cancer was that it is considered to be aggressive, but my doctors haven’t told me that it is any specific type of prostate cancer, and I imagine there are different strains that might respond to the injections differently.  I only mention this because it might explain why you have had four injections already and still seem to be anticipating more.

     

    Have you had regular blood work done during these four months of injections?  If you have and you still have detectable cancer, then we must have different strains.  I wish you a speedy recovery.  I agree with you that the treatment certainly lessens the quality of life.

     

    I can’t say that I’ve been very depressed but I’ve had a lot of other nasty side effects.  For the first couple of months I had flu-like symptoms all day, every day.  They dissipated by month 3 but I have been having hot flashes and bone pain from the start of treatment and still have the hot flashes most evenings and during the night.  The bone pain has subsided somewhat but my biggest concern now is that I have considerably larger breasts and I’ve lost a lot of muscle.  I’ve also gained about ten pounds of fat.

     

    I was in very good shape before treatment because I went to the gym 5 days a week for years.  I felt so sick while on these injections that I stopped going altogether and just went back today for the first time because I learned that resistance training strengthens bones and reduces side effects.  If my cancer is still undetectable on my next appointment (in August) I’m considering Testosterone Replacement Therapy.  I have found that it can be done with patches or skin creams without doing liver damage.  I still have to research it further though.  I’ve read some message boards where some men have been through this treatment and have had the Testosterone Replacement Therapy, and they said they felt fully rejuvenated by it and had lots of energy and felt great.  It sound good to me as long as there are no serious risks involved, and they seem to think there are not.

     

    My doctor told me that by the end of treatment my testicles should be all but gone but, so far, they are only down to about half the size they used to be, so I’m hoping that means I still have enough testosterone to rebuild some of my body’s lost muscle.

     

    Finally, I had hoped that the side effects of my second 4-month injection would be over by the time four months had elapsed, but that isn’t the case.  It’s been more than 4 months and the side effects are still pretty strong, especially the regular hot flashes.  I understand that they might last for as long as another 3 or 4 months.  The Eligard stays in your system for a long time but eventually the side effects should subside completely except, I guess, for the physical changes to the body.  That’s why I think that Testosterone Replacement Therapy might be very beneficial.

     

    I hope this has been helpful, Rickey.  Wishing you all the best. 

     

    bellisimo

  • Rickey001
    Rickey001 Member Posts: 4
    bellisimo said:

    Eligard Injections

    Hi Rickey,

     

    I’m new to the board and have just completed a treatment of 1 month of Casodex and two 4-month injections of Leuprolide Acetate (Eligard).

     

    My doctors at the Cancer Clinic I’m being treated at have never mentioned anything about Gleason.  They have only shown me the results of my PSA numbers.

     

    I’m 74, by the way, and I was first treated about 8 years ago with radiation as my cancer was confined to the prostate only.  Prior to radiation my PSA number was 17.  That’s when my urologist decided it was time to biopsy my prostate and, of course, the biopsy found the cancer.

     

    After 2 weeks of radiation my PSA had dropped from 17 to just above 1.  My doctor said we would keep a close watch on things with blood work every 6 months.  Nine months ago my PSA had gradually risen from 1 to 12 and they decided to treat me with the Eligard starting first with 1 month of Casodex and then two 4-month injections of Eligard.

     

    The next time I had blood work done and saw my doctor at the cancer clinic was just a week after my second 4-month injection of the Eligard.  The results showed my cancer to be undetectable.  I was a bit annoyed that I had needed to take the second injection because it seemed to me that my cancer was probably undetectable before I had it.

     

    All I’ve been told about my prostate cancer was that it is considered to be aggressive, but my doctors haven’t told me that it is any specific type of prostate cancer, and I imagine there are different strains that might respond to the injections differently.  I only mention this because it might explain why you have had four injections already and still seem to be anticipating more.

     

    Have you had regular blood work done during these four months of injections?  If you have and you still have detectable cancer, then we must have different strains.  I wish you a speedy recovery.  I agree with you that the treatment certainly lessens the quality of life.

     

    I can’t say that I’ve been very depressed but I’ve had a lot of other nasty side effects.  For the first couple of months I had flu-like symptoms all day, every day.  They dissipated by month 3 but I have been having hot flashes and bone pain from the start of treatment and still have the hot flashes most evenings and during the night.  The bone pain has subsided somewhat but my biggest concern now is that I have considerably larger breasts and I’ve lost a lot of muscle.  I’ve also gained about ten pounds of fat.

     

    I was in very good shape before treatment because I went to the gym 5 days a week for years.  I felt so sick while on these injections that I stopped going altogether and just went back today for the first time because I learned that resistance training strengthens bones and reduces side effects.  If my cancer is still undetectable on my next appointment (in August) I’m considering Testosterone Replacement Therapy.  I have found that it can be done with patches or skin creams without doing liver damage.  I still have to research it further though.  I’ve read some message boards where some men have been through this treatment and have had the Testosterone Replacement Therapy, and they said they felt fully rejuvenated by it and had lots of energy and felt great.  It sound good to me as long as there are no serious risks involved, and they seem to think there are not.

     

    My doctor told me that by the end of treatment my testicles should be all but gone but, so far, they are only down to about half the size they used to be, so I’m hoping that means I still have enough testosterone to rebuild some of my body’s lost muscle.

     

    Finally, I had hoped that the side effects of my second 4-month injection would be over by the time four months had elapsed, but that isn’t the case.  It’s been more than 4 months and the side effects are still pretty strong, especially the regular hot flashes.  I understand that they might last for as long as another 3 or 4 months.  The Eligard stays in your system for a long time but eventually the side effects should subside completely except, I guess, for the physical changes to the body.  That’s why I think that Testosterone Replacement Therapy might be very beneficial.

     

    I hope this has been helpful, Rickey.  Wishing you all the best. 

     

    bellisimo

    Elegard Injections:Response

    Hi Bellisimo...thanks for sharing your experiences with Elegard treatments. Your information is very helpful.. i hope today finds you doing well.

     

    Today, I had my regular 4 months follow-up visit with my Urologist..Basically, she said since my PSA's have not risen  and have been consistently showing undetectable cancer(less than 0.1), she is putting me on intermittent ADT..I am to continue to have regular PSA's done every 3 months to assess if( or more precisely when, I suppose) I need to go back on my Elegard injections. I have had a total of 4 injections every 4 months, beggining in December of 2011. I was told  that I needed the Elegard because my cancer was considered "aggressive" in that my Gleason score was very high 9 of 10(5+4) involving 30% of 1 of 1 core of the prostatic biopsy. This was in the right Medial Base. In the Right Lateral Mid. the Gleason score was 9 of 10 (4+5) involving 30% of 1 of 1 core of the prostatic biopsy. (Embarasseddont ask me what this means other than they told me I had "aggressive cancer" and I had to have 45 radiation treatments then Elegard). Prior to radiation, I had a complete body scan to ensure the cancer had not spread. It had not, thank God. My next appointment with my Urologist is in August, at which time my latest PSA will be reviewed.

    My most annoying symptoms from the ADT have been mostly a loss of libido( including shrunken testicles and ED)) very easy fatigue and hot flashes. I also have had aching in my legs, which I didn't attribute to Elegard until I read about this symptom on the board. I also have had some intermittent depression(I attribute this more to the death of my best friend since childhood after battling Leukemia for the past 2 years). My Urologist put me on a trial of Cialis, 5mg. daily for 30 days. She says the Cialis does not raise the Testosterone levels which is a good thing so the cancer does not react to raised Testosterone...If that doesn't work another option would be to go to a Men's Health Clinic to see if there are other medications/devices that will help..We'll see. I'm 71, but prior to Radiation I never had any ED problems. But as my Urologist said, it is a "rocky Road', this Protate cancer and its course of treatments, symptoms and side Effects, etc.

    Well, that's my latest update ..Please feel free to reply, add or just come back to chat..

     

    Regards,

    Rickey..

  • shipjim
    shipjim Member Posts: 137 Member
    bellisimo said:

    Eligard Injections

    Hi Rickey,

     

    I’m new to the board and have just completed a treatment of 1 month of Casodex and two 4-month injections of Leuprolide Acetate (Eligard).

     

    My doctors at the Cancer Clinic I’m being treated at have never mentioned anything about Gleason.  They have only shown me the results of my PSA numbers.

     

    I’m 74, by the way, and I was first treated about 8 years ago with radiation as my cancer was confined to the prostate only.  Prior to radiation my PSA number was 17.  That’s when my urologist decided it was time to biopsy my prostate and, of course, the biopsy found the cancer.

     

    After 2 weeks of radiation my PSA had dropped from 17 to just above 1.  My doctor said we would keep a close watch on things with blood work every 6 months.  Nine months ago my PSA had gradually risen from 1 to 12 and they decided to treat me with the Eligard starting first with 1 month of Casodex and then two 4-month injections of Eligard.

     

    The next time I had blood work done and saw my doctor at the cancer clinic was just a week after my second 4-month injection of the Eligard.  The results showed my cancer to be undetectable.  I was a bit annoyed that I had needed to take the second injection because it seemed to me that my cancer was probably undetectable before I had it.

     

    All I’ve been told about my prostate cancer was that it is considered to be aggressive, but my doctors haven’t told me that it is any specific type of prostate cancer, and I imagine there are different strains that might respond to the injections differently.  I only mention this because it might explain why you have had four injections already and still seem to be anticipating more.

     

    Have you had regular blood work done during these four months of injections?  If you have and you still have detectable cancer, then we must have different strains.  I wish you a speedy recovery.  I agree with you that the treatment certainly lessens the quality of life.

     

    I can’t say that I’ve been very depressed but I’ve had a lot of other nasty side effects.  For the first couple of months I had flu-like symptoms all day, every day.  They dissipated by month 3 but I have been having hot flashes and bone pain from the start of treatment and still have the hot flashes most evenings and during the night.  The bone pain has subsided somewhat but my biggest concern now is that I have considerably larger breasts and I’ve lost a lot of muscle.  I’ve also gained about ten pounds of fat.

     

    I was in very good shape before treatment because I went to the gym 5 days a week for years.  I felt so sick while on these injections that I stopped going altogether and just went back today for the first time because I learned that resistance training strengthens bones and reduces side effects.  If my cancer is still undetectable on my next appointment (in August) I’m considering Testosterone Replacement Therapy.  I have found that it can be done with patches or skin creams without doing liver damage.  I still have to research it further though.  I’ve read some message boards where some men have been through this treatment and have had the Testosterone Replacement Therapy, and they said they felt fully rejuvenated by it and had lots of energy and felt great.  It sound good to me as long as there are no serious risks involved, and they seem to think there are not.

     

    My doctor told me that by the end of treatment my testicles should be all but gone but, so far, they are only down to about half the size they used to be, so I’m hoping that means I still have enough testosterone to rebuild some of my body’s lost muscle.

     

    Finally, I had hoped that the side effects of my second 4-month injection would be over by the time four months had elapsed, but that isn’t the case.  It’s been more than 4 months and the side effects are still pretty strong, especially the regular hot flashes.  I understand that they might last for as long as another 3 or 4 months.  The Eligard stays in your system for a long time but eventually the side effects should subside completely except, I guess, for the physical changes to the body.  That’s why I think that Testosterone Replacement Therapy might be very beneficial.

     

    I hope this has been helpful, Rickey.  Wishing you all the best. 

     

    bellisimo

    Tosterone replacement

    Commonly sold on TV as Low T.  In most of our cases, it's NO T.  The only comment I've heard more than once on this for us survivors is adding T is like pouring gas on a fire. Just get the latest info and press hard on possible side effects. Good luck,jj