Question about Lupron!

kidclutch
kidclutch Member Posts: 57

Hello! My father was diagnosed last October with metastatic prostate cancer (after two negative biopsies, it ended up causing a fracture in his lower spine which led to bone biopsy). Lesions in lower spine, a rib, and left hip. He’s had two Lupron injections (every 3 months), with follow up bone scans (first showed no new growth, second showed improvement). He just had his third shot, PSA is down to 6 from 60. He has back pain, they’ll likely do another ten rounds of radiation or so. Is that PSA drop good? Standard? Concerning? He’s tolerating it pretty well, mostly hot flashes! Looking to hear from anyone with a similar diagnosis / experience. Thanks!

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,700 Member
    Lupron is working well but RT is the one giving the blow

    I wonder if any MRI or PET exam has been done to locate metastases in tissues other than bone. In any case, metastases in bone are typically treated with hormonal manipulations (ADT). Spot radiation is kept to alleviate pain or directed to areas that may be in risk of collapsing (cause of paralyzes).

    Your dad's cancer seems to be hormonal (Lupron) dependent which can be assumed from the low PSA. ADT may also be behind the improvement at affected areas but it is the radiation (RT) that has given the bigger blow. The protocol is solid. The only problem is that the RT cannot be repeated at the same spot twice so that if the cancer recurs one needs to consider an attack with chemotherapy. ADT is palliative and got many drugs in its arsenal that can be exchanged or combined in the treatment before refractory is considered. A concern with hormonal therapies is that these weakens the bone so that many doctors add to the protocol bisphosphanates (Prolia, Fosamax, etc) to prevent deterioration of bone. I would recommend you to research details on the matter and get your dad tested (DEXA scan) to check bone health. Testosterone is also a marker to be included in the follow up of his treatment.

    https://www.pcf.org/c/side-effects-of-hormone-therapy/

    https://www.prostatecanceruk.org/prostate-information/treatments/bisphosphonates

    I wonder his age. Older patients with other health issues (existent or expected to occur) should involve medical oncologists in the team of physicians to control possible interaction of drugs/medications. I believe that quality of living is important so that one should balance the extent of treatment against symptoms.

    Welcome to the board.

    Best wishes for successful outcome in the therapy.

    VGama

  • Chuckect
    Chuckect Member Posts: 45
    lupron dose has gone from 3 months to 6 months

    all this talk of lupron has qued me to innquire :: is this comon practice to change the dose to every 6 months instead of 3 months ??  the reason i asked is that this last lab my PSA has gone from 22.4 to 77.8, which is not a real good indication..

  • RobLee
    RobLee Member Posts: 269 Member
    Lupron 3 or 6 months

    Sometimes the doc will start a patient on a shorter duration of Lupron in case he has an allergic reaction, but usually that would be a one month injection.  If they start with six months and the patient has an adverse reaction then there isn't much they can do about it.  But starting with three months and then moving to six months would probably indicate something else.

    Your doc may have started you with a three month shot just to see whether or not it would be effective. Some PCa's are not sensitive to hormone deprivation, and in some worst cases the cancer becomes "castrate resistant"... in other words, the HT doesn't work.  As I recall in your case the Lupron did lower your PSA from hundreds to 50 or so, but now it looks like it's not working so well anymore. There's other stuff that may work but it sounds like you've already been on just about everything.

  • VascodaGama
    VascodaGama Member Posts: 3,700 Member
    6-month shot just extends the period in chemical castration

    The dose of Lupron doesn't change its effect on the treatment. The rise of the PSA could be due to refractory or bad administration of the shot. You can find it via a testosterone test done with a PSA. If your T is low and the PSA is high it equals to refractory. If your T is high and the PSA is high, it equals to bad administration of the shot.

    Which one is your case?

    In case of refractory, to improve the hormonal effectiveness one should add more blockades to the protocol, such as a daily antiandrogen pill like Casodex (ADT2) , or still more with a third blockade (ADT3) using a 5-ARI like Fisnasteride/Avodart. Some doctors change the agonist from Lupron to an antagonist like Firmagon, or add chemo to the mixture.

    Hope for the best,

    VG    

     

  • kidclutch
    kidclutch Member Posts: 57

    Lupron is working well but RT is the one giving the blow

    I wonder if any MRI or PET exam has been done to locate metastases in tissues other than bone. In any case, metastases in bone are typically treated with hormonal manipulations (ADT). Spot radiation is kept to alleviate pain or directed to areas that may be in risk of collapsing (cause of paralyzes).

    Your dad's cancer seems to be hormonal (Lupron) dependent which can be assumed from the low PSA. ADT may also be behind the improvement at affected areas but it is the radiation (RT) that has given the bigger blow. The protocol is solid. The only problem is that the RT cannot be repeated at the same spot twice so that if the cancer recurs one needs to consider an attack with chemotherapy. ADT is palliative and got many drugs in its arsenal that can be exchanged or combined in the treatment before refractory is considered. A concern with hormonal therapies is that these weakens the bone so that many doctors add to the protocol bisphosphanates (Prolia, Fosamax, etc) to prevent deterioration of bone. I would recommend you to research details on the matter and get your dad tested (DEXA scan) to check bone health. Testosterone is also a marker to be included in the follow up of his treatment.

    https://www.pcf.org/c/side-effects-of-hormone-therapy/

    https://www.prostatecanceruk.org/prostate-information/treatments/bisphosphonates

    I wonder his age. Older patients with other health issues (existent or expected to occur) should involve medical oncologists in the team of physicians to control possible interaction of drugs/medications. I believe that quality of living is important so that one should balance the extent of treatment against symptoms.

    Welcome to the board.

    Best wishes for successful outcome in the therapy.

    VGama

    Thanks for your reply! He

    Thanks for your reply! He will be 60 this month. When he was hospitalized for the spinal fracture, the hospital did all the imaging available and found nothing alarming outside of the skeletal lesions! He is working with both his longtime urologist and an oncologist. I believe a new bone scan is coming (they’ve been doing them a few weeks after each Lupron shot) but so far, no cause for concern aside from the obvious. All bloodwork shows a healthy man! Frustrating (why did the one medical issue have to be this one?) but good news. He was diagnosed “hormone sensitive,” doctors telling him to let the drug and radiation protocol “do its job.” So far, seems to be doing just that. We are new to this disease, and I have found talking to other real patients very helpful and internet research to be very upsetting. He has had degenerative spine issues for years and years so it’s hard to differentiate what is causing the pain since he’s always had back pain. I do believe the Casodex / Lupron may be causing some of the pain— does that sound possible? I appreciate the replies very much, they’re all very helpful to my emotional state. 

  • kidclutch
    kidclutch Member Posts: 57

    Lupron is working well but RT is the one giving the blow

    I wonder if any MRI or PET exam has been done to locate metastases in tissues other than bone. In any case, metastases in bone are typically treated with hormonal manipulations (ADT). Spot radiation is kept to alleviate pain or directed to areas that may be in risk of collapsing (cause of paralyzes).

    Your dad's cancer seems to be hormonal (Lupron) dependent which can be assumed from the low PSA. ADT may also be behind the improvement at affected areas but it is the radiation (RT) that has given the bigger blow. The protocol is solid. The only problem is that the RT cannot be repeated at the same spot twice so that if the cancer recurs one needs to consider an attack with chemotherapy. ADT is palliative and got many drugs in its arsenal that can be exchanged or combined in the treatment before refractory is considered. A concern with hormonal therapies is that these weakens the bone so that many doctors add to the protocol bisphosphanates (Prolia, Fosamax, etc) to prevent deterioration of bone. I would recommend you to research details on the matter and get your dad tested (DEXA scan) to check bone health. Testosterone is also a marker to be included in the follow up of his treatment.

    https://www.pcf.org/c/side-effects-of-hormone-therapy/

    https://www.prostatecanceruk.org/prostate-information/treatments/bisphosphonates

    I wonder his age. Older patients with other health issues (existent or expected to occur) should involve medical oncologists in the team of physicians to control possible interaction of drugs/medications. I believe that quality of living is important so that one should balance the extent of treatment against symptoms.

    Welcome to the board.

    Best wishes for successful outcome in the therapy.

    VGama

    He also developed an allergy

    He also developed an allergy to pineapple after starting treatment. And his hair started growing back in... brown not gray. Funny stuff. 

  • VascodaGama
    VascodaGama Member Posts: 3,700 Member
    edited May 2018 #8
    What's your dad's clinical stage

    Kid,

    Survivors at this forum are ready to help you understanding facts. Please share more details about your dad's case.

    What is his PSA histology?
    Did he get a positive diagnosis on a third biopsy or was it done on bone alone? What was found?
    What is the Gleason score provided by the pathologist?
    What king of image studies did the doctor execute?

    His doctors surely are doing their best but the patient should be acquainted with the procedures, its consequences and outcomes. Doctors treat according to guidelines. We can always inquire or discuss on something we wish to have or would not like to happen, so that the doctor will take such into consideration. The fact of having a DEXA scan can serve as an example in your dad's case. A simple bone scan does not tell everything.

    Pain after Lupron shot is typical occurrence in patients with metastases at the spine if injected before treating with an antiandrogen (what was your dad's case?). Lupron causes "flare" (a condition represented by a surge in testosterone fabrication) which will directly augment the action of the cancer affecting the tissues where it is set. In critical cases it may compress the spinal chord leading to paralyzes. To avoid such occurrences doctors start by administering an antiandrogen in the initial two weeks before the Lupron shot so that the flare doesn't occur. ADT therefore doesn't cause pain. The typical cause of pain in metastases is due to inflammation of affected tissues were the cancer resides. In bone this is common so that doctors reserve radiation to treat these spots when it becomes unbearable.

    The reality in extensive metastases cases is that these cannot be cured via a radical (surgery or radiation). Radiation therefore is spared for critical issues only. I wonder what was the clinical stage attributed to your father. Was it T4 N0M1 or T3b N0M1?

    You need to know the details of his diagnosis to access any possibility in cure or on the way to extend life.

    A side note to you and your brothers and sisters is that you are at 4 times in risk to contract prostate or breast hereditary cancer. You need to start screening on the matter once you get to 40 yo.

    Best wishes and luck,

    VGama

  • Jerry Mac
    Jerry Mac Member Posts: 21
    edited May 2018 #9
    Question

    I was diagnosed with organ confined pc after prostatectomy. the biospy report reflected a g9, but the path report reflected a g6 & 7. Nodes clear, sv clear, negative margin. Should i allow lupron injections are wait. the injections appear to be worthless from what i can gather.

     

    Thanks,

    JMAC

  • Chuckect
    Chuckect Member Posts: 45
    chuck's psa/testosterone

    a note to VG, my testosterone is <2.5ng/dl in march.. they did not check testosterone the last two labs ,so i mill make sure they check that next lab.. seems like i should know if i'm refractory or not...  ;~} ---  KID welcome to the discussion boards, and good luck with your dad.. it always makes me sad when when that prostate cancer goes so far as to matasticise in to the bones and other parts of the body,, everything i read says that it is detectable so why does it some times get away from us.. 

  • VascodaGama
    VascodaGama Member Posts: 3,700 Member
    Chuckect ; Testosterone and Estrogens work together

    Chuckect,

    While on HT maintenance the testosterone doesn't need to be checked at every PSA test. I think that you could test it at the time of your agonist shot. In my case I was on 6-month Eligard so that I used to do the test every 6 months.

    When on drugs vacation I did it more frequently to verify if it would return smoothly to normal levels. For my surprise it increased at the beginning but did not stay the levels it used to be before treatment. Estrogens took the place of the testosterone when I was on castration to provide my body functions in need of androgens. If you are interested you can alternate the test doing the T sometimes and the estrogens other times.

    T <2.5 ng/dL is very low and at a perfect level indicating that the shot is working fine (chemical castration). Normal level is above 250 ng/dL. ADT refractory would be verified if the PSA increases constantely at your present T level.

    Best,

    VG

  • kidclutch
    kidclutch Member Posts: 57
    Chuckect said:

    chuck's psa/testosterone

    a note to VG, my testosterone is <2.5ng/dl in march.. they did not check testosterone the last two labs ,so i mill make sure they check that next lab.. seems like i should know if i'm refractory or not...  ;~} ---  KID welcome to the discussion boards, and good luck with your dad.. it always makes me sad when when that prostate cancer goes so far as to matasticise in to the bones and other parts of the body,, everything i read says that it is detectable so why does it some times get away from us.. 

    thanks so much. he had a new

    thanks so much. he had a new nuclear bone scan done this week and will be receiving more radiation soon, should help with the pain!

  • Regulator
    Regulator Member Posts: 42
    Chuckect said:

    chuck's psa/testosterone

    a note to VG, my testosterone is <2.5ng/dl in march.. they did not check testosterone the last two labs ,so i mill make sure they check that next lab.. seems like i should know if i'm refractory or not...  ;~} ---  KID welcome to the discussion boards, and good luck with your dad.. it always makes me sad when when that prostate cancer goes so far as to matasticise in to the bones and other parts of the body,, everything i read says that it is detectable so why does it some times get away from us.. 

    " . . .  so why does it some

    " . . .  so why does it some times get away from us"?

    Given my own experience, I think I can speak to this. I think its a matter of fear and delays on the part of the actual patient to move forward in some instances, and it can most definitely be caused by delays associated with the American medical system in getting patient's referred to the necessary facility or specialist(s). In my case, much to my regret, I put-off a number of key appointments with urologists and/or oncologists that probably would have led to earlier treatment, but at the same time, significant delays in treatment occurred as a direct result of referrals to other backlogged facilities or specialists, that sometimes took 6-8 weeks to fulfill. In other words, far too much time can pass between medical visits, sometimes caused by the patient themselves, and sometimes by (IMHO), an inferior (log-jammed) American medical system.  

  • Grinder
    Grinder Member Posts: 487 Member
    Regulator said:

    " . . .  so why does it some

    " . . .  so why does it some times get away from us"?

    Given my own experience, I think I can speak to this. I think its a matter of fear and delays on the part of the actual patient to move forward in some instances, and it can most definitely be caused by delays associated with the American medical system in getting patient's referred to the necessary facility or specialist(s). In my case, much to my regret, I put-off a number of key appointments with urologists and/or oncologists that probably would have led to earlier treatment, but at the same time, significant delays in treatment occurred as a direct result of referrals to other backlogged facilities or specialists, that sometimes took 6-8 weeks to fulfill. In other words, far too much time can pass between medical visits, sometimes caused by the patient themselves, and sometimes by (IMHO), an inferior (log-jammed) American medical system.  

    American medical system

    You are correct in complaining about the American medical system... but other systems have similar or different drawbacks. The patients I have known of in some socialist medicine programs have a much harder time getting past their GP, then are discouraged from scheduling treatment with specialists to limit the drain on available funds for treatments. In other words, the government doesn't want to spend money on their treatments, even if it saves their life.

    You should enquire with others here in your area if you are disatisfied with your care. That is the one advantage we have in America over a full on socialist medical system... if we dont like the professional we have , we can find a different one. I went through 5 different urologists... however, if your circumstsnces are extremely dire, you may not have that luxury.

  • Chuckect
    Chuckect Member Posts: 45
    edited June 2018 #15
    v gamma

    my testosterone is still low,, < 2.5 ng/dl..  and PSA is down in the 20s,, so i'm preety good in the long run..  I am having joint pain, weakness, fatigue, and a bit of dizzyness,, but i guess that goes with the bone mets,, and i assume it gets worse with time.. Oh well so it goes..