PSA 1550

Sidtippy2
Sidtippy2 Member Posts: 37

My husband was diagnosed about 8 months ago with stage IV prostate cancer.  He was having typical prostate symptoms but we were stunned at how far along the disease had progressed.  PSA was 1550, gleason score of 9, mets to bone, lymph nodes and lung.  He's responded very well to hormone therapy and his PSA has come down every month, most recently to 30.  Other than extreme fatigue, he's feeling relatively ok.  We've been married forever and so we're both reeling with this diagnosis and anticipated decrease in life expectency.  He is 58 and has been in good health.  

Anyone have similar situation?  Words of wisdom or insights into future/life expectancy?

 

appreciate any insight

 

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Comments

  • RobLee
    RobLee Member Posts: 269 Member
    So sorry Sid

    I'm so sorry to read about your husband's cancer. There's really not much that can be done at this point.  Once it has spread to the bones and organs there's really no way to get rid of it.  So you are looking at how long he can be kept alive and how comfortable he will be.  You haven't meantioned any treatments other than HT, but there are new therapies being developed all the time.  Eventually PCa becomes castrate resistant and HT no longer works, but for some that doesn't happen for a decade or even longer.  Every case is different.  Be sure to take good care of yourself, as his caregiver and loving spouse.  Ultimately this will be very hard on both of you.

  • Sidtippy2
    Sidtippy2 Member Posts: 37
    Thank you for your support.

    Thank you for your support.  I know no one can really predict life expectancy, but I keep reading such conflicting information, its very difficult.  We're happy that he's responding well to the HT, but his PSA was up a couple points last month, so we're nervous about the next result. He seems to be having more bone pain too, it's hard to tell what's just general discomfort and what's bone pain.  What a scary journey.

  • VascodaGama
    VascodaGama Member Posts: 3,526 Member
    Try setting up a monitoring program

    Sid,

    Welcome to the board. I hope he manages to get the longest life expectancy possible but with quality of life.

    Can you share more details on his diagnosis and treatment protocol? What is the Gleason score?

    You said that his PSA has risen from a nadir. Can you tell more about the PSA histology?

    The worrisome goes to the metastases in organs, the liver in particular, but you comment these to be in the lungs. I know of several patients that have dissected the metastases in lung successfully. This is treatable if only a fewer number of spots are involved.

    The hormonal treatment is palliative but in the hands of good oncologists these can hold the bandit for long periods of time. There are he so called second-line ADT to replace the ones that stop working or immune therapies to extend their effectiveness. You need to be vigilant not just with the cancer but with any deterioration of other functional organs like the heart, kidneys and liver that will be affected by ADT drugs and manipulations.

    Your husband needs to set a sort of monitoring program to avoid deterioration, involving diet, physical exercises and periodical tests (testosterone, estrogens, bone densitometry, vitamin D, etc) along with the PSA to check for the functionality of other systems and to verify the effectiveness of the ADT before it becomes refractory. Intermittent approaches may be useful to prolong the period of the hormonal treatment.

    Doctors typically, in stage 4 patients, treat the pain in bone with spot radiation. This cannot be done at the same area twice so that one must choose the most affected areas.

    A good book for you to read is;

    “Beating Prostate Cancer: Hormonal Therapy & Diet”, by Dr. Charles “Snuffy” Myers.

    Tell us more and will try helping you with comments based on our own experiences.

    Best wishes and luck in his/your journey.

    VGama

     

  • Sidtippy2
    Sidtippy2 Member Posts: 37
    edited August 2018 #5

    Try setting up a monitoring program

    Sid,

    Welcome to the board. I hope he manages to get the longest life expectancy possible but with quality of life.

    Can you share more details on his diagnosis and treatment protocol? What is the Gleason score?

    You said that his PSA has risen from a nadir. Can you tell more about the PSA histology?

    The worrisome goes to the metastases in organs, the liver in particular, but you comment these to be in the lungs. I know of several patients that have dissected the metastases in lung successfully. This is treatable if only a fewer number of spots are involved.

    The hormonal treatment is palliative but in the hands of good oncologists these can hold the bandit for long periods of time. There are he so called second-line ADT to replace the ones that stop working or immune therapies to extend their effectiveness. You need to be vigilant not just with the cancer but with any deterioration of other functional organs like the heart, kidneys and liver that will be affected by ADT drugs and manipulations.

    Your husband needs to set a sort of monitoring program to avoid deterioration, involving diet, physical exercises and periodical tests (testosterone, estrogens, bone densitometry, vitamin D, etc) along with the PSA to check for the functionality of other systems and to verify the effectiveness of the ADT before it becomes refractory. Intermittent approaches may be useful to prolong the period of the hormonal treatment.

    Doctors typically, in stage 4 patients, treat the pain in bone with spot radiation. This cannot be done at the same area twice so that one must choose the most affected areas.

    A good book for you to read is;

    “Beating Prostate Cancer: Hormonal Therapy & Diet”, by Dr. Charles “Snuffy” Myers.

    Tell us more and will try helping you with comments based on our own experiences.

    Best wishes and luck in his/your journey.

    VGama

     

    So first PSA was 1550, drawn

    So first PSA was 1550, drawn after he was having frank blood in his urine.  His GP immediately ordered abd CT which showed significant cancer in prostate and other suspicious areas.  Bone scan showed ca throughout his pelvis and upper right femur, also in his shoulder blade, and a few spots on ribs.  CT showed significant lymph node invovlement throughout, esp mediastinal area, and several spots in lungs.  We have an excellent urological oncologist and he did a cystoscopy and transrectal ultrasound an biopsy (took 12 sample, all were positive).  Gleason score of 9.

    Started with Lupron every 6 months, Xgeva monthly and casodex.  See urological oncologist every month and have a PSA each month.  While PSA is still really high, it has come down each month from 1550 to 422 to 212 to 71 to 32 to 28 to 22.3 but now up to 24.  He has a PSA this week and if it's up again, will look to change meds.

    Anticipate radiation for bone pain, but dr doesn't want to use this too soon, as you mentioned it can only be used for one series in each area and he wants to wait until pain is worse.

    Doesn't talk much about chemo, made it sound like that is a bit of a last ditch effort and my husband isn't overly interested in that.  

    Also saw a medical oncologist who agrees with current plan.

    He has general discomfort but not intense bone pain yet.  He has extreme fatigue, though it is better than it was in the winter.  Luckily he is retired, so can rest when tired.  He does try to stay active and does some light weight lifting, but not able to do much more.  Can't walk long distances, etc.  This is a man who has been incredibly active all his life.  

    Apprexpiate the book recommendation, will definitely get this one. 

     

  • VascodaGama
    VascodaGama Member Posts: 3,526 Member
    The quality of life should take the first stand

    Sid,

    I am sorry to hear about the extent of the disease as you describe it. I was thinking on the possibility in debulking some spots to alleviate the burthen of the whole cancer but due to the extent of the spread at the mediastinum area (that contains some of the most vital organs of the body), I think it better for your husband to just try holding the bandit with the present treatment.

    The last PSA increase could signify the start of refractory or it could be due to a moment of unbalanced hormonal biorhythm. Lupron should drive your husband into chemical castration but any movement that could massage or squeeze the prostate (or sex) the day before drawing blood for the test can influence the level of the PSA. Casodex works by interfering with the absorption of androgens at cell's receptors (AR).  It works well until mutation of AR occurs rending down this drug’s capabilities. At this time oncologists try increasing the dose from 50/daily to 100 or 150 mg. if by doing so the PSA increase continues then they call it refractory and substitute Casodex with other more refined antiandrogen, like Xtandi. I recommend your husband to do a testosterone test to check Lupron's effectiveness. It should be lower than 25 ng/dL

    Famous oncologists in aggressive cases similar to your husband use other means of blockades too. For instance, they use 5-ARI like Avodart and Finasteride to avoid refinement of the androgens. They also tend to use Crestor (a statin) because cells produce their own androgens from cholesterol. Surely each drug will add more side effects so that oncologists usually add medication to improve/boost the immune system such as Leukine (taken intermittently).

    This is something you will understand by reading the above book and that you can discuss with his present doctor, which can be added in your monitoring program. The book author, Dr. Myers is a retired medical oncologist that dedicated his professional life in investigations and treating prostate cancer patients. He worked as an Integrative Oncologist overseeing all aspects of the treatment and balancing life style. You can see several of his videos in this link;

    http://askdrmyers.wordpress.com/2012/02/01/memory-adt-for-pca/

    Fatigue was probably my worse symptom when on ADT. The wide spread of cancer may also cause fatigue but it is the hipogonadism status that drives us to a series of unpleasant symptoms. Mood-changes are also terrifying and our partners must be prepared to understand it as occasional. It has led some couples to divorce for no particular reason. Physical exercises and a change in life tactics are good to balance things. Walking seems to be the best but one will need to rest along the way. Afternoon naps and earlier dinners are also good.

    Here is a comprehensive introduction on Hormonal Treatment;

    http://www.cancer.org/cancer/prostatecancer/detailedguide/prostate-cancer-treating-hormone-therapy

    Here is a link on nutrition;

    http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

    Try being positive. How about a trip to visit that place you both wanted but never did.

    Best wishes,

    VGama

     

  • Sidtippy2
    Sidtippy2 Member Posts: 37
    edited August 2018 #7
    Many many thanks for your

    Many many thanks for your input and information.  Much more detail than I have heard before and much appreciated.

  • rdw453
    rdw453 Member Posts: 2
    edited August 2018 #8
    so sorry to hear this. my

    so sorry to hear this. my wife and i was hit with the same diagnosis. my psa was 4.61, gleason score of 7. i had surgery last week to have prostate removed. two lymph nodes where sent to pathology. results came back with a gleason score of 9. so now i guess it is a wait and see. But i can tell you one thing. cancer is not going to ruel my life.my wife and i are going to enjoy every day to the fullest. Good luck on this journey

     

  • Sidtippy2
    Sidtippy2 Member Posts: 37
    edited August 2018 #9
    Very sorry to hear of your

    Very sorry to hear of your diagnosis, what a miserable thing cancer is, turns your world upside down.

    We have said the same thing, my husbands goal is to keep things as "normal" as possible.  There are a few silver linings, a little easier to keep things in perspective, we're very intentional about how we spend our time. And people are so kind...family and friends alike.

    This site is very helpful, wish I'd found it sooner.  I do wonder if others have had a PSA as high as my husbands...when they first told us it was 1550, I thought it must have been a mistake.  Have you heard of such a high level and would you interpret that as a bad sign.  We do realize that he has probably been sick (had ca) for a couple years and we just missed the signs and symptoms.  Hind sight :(

  • G53
    G53 Member Posts: 33
    High PSA value

    In a different forum there was a patient with a PSA value of 6700 at diagnosis. Gleason 9 and mets everywhere. He was treated with ADT plus Docetaxel (Chemo). After one year the PSA value got down to 1.1 and then started to rise again.

    I would recommend to add Docetaxel to the current hormone therapy.

  • Sidtippy2
    Sidtippy2 Member Posts: 37
    edited August 2018 #11
    Thanks G53, it's helpful to

    Thanks G53, it's helpful to hear other extremely high values. 

    PSA drawn yesterday and is up again.  So had been coming down steadily to a low of 22.3, then up to 24 and yesterday was up to 26.3. We see dr Tuesday.

  • VascodaGama
    VascodaGama Member Posts: 3,526 Member
    edited September 2018 #12
    AAWR

    Sid,

    I am sorry to hear about the increase. I would recommend you to discuss with his doctor next week about the need in stopping the Casodex straight, substituting it by another antiandrogen.

    The matter regards what is called "Antiandrogen Withdrawal Response" or "Androgen Withdrawal Syndrome" that occurs when the cancer has mutated the AR and starts feeding on the Casodex itself. The issue is seen initially with an increase in the PSA (refractory) that starts to fall once the Casodex is stoped. Casodex is made up of a similar biostructure as the real stuff so provoke absorption by the cancerous cell, faking the real androgen. The syndrome can last 4 to 6 months with lower PSA results. After that one must start taking another antiandrogen or change to the second-line ones like Xtandi.

    Here are some materials for you to read and prepare the questions for your next meeting;

    https://pcri.org/-aawr-the-anti-androgen-withdrawal-response

    https://jhoonline.biomedcentral.com/articles/10.1186/1756-8722-1-21

    https://www.researchgate.net/publication/257461567_No_Androgen_Withdra

    wal_Syndrome_for_Enzalutamide_A_Report_of_Disease_Dynamic

    s_in_the_Postchemotherapy_Setting

    Best of lucks.

    VGama

  • Sidtippy2
    Sidtippy2 Member Posts: 37
    edited September 2018 #13

    AAWR

    Sid,

    I am sorry to hear about the increase. I would recommend you to discuss with his doctor next week about the need in stopping the Casodex straight, substituting it by another antiandrogen.

    The matter regards what is called "Antiandrogen Withdrawal Response" or "Androgen Withdrawal Syndrome" that occurs when the cancer has mutated the AR and starts feeding on the Casodex itself. The issue is seen initially with an increase in the PSA (refractory) that starts to fall once the Casodex is stoped. Casodex is made up of a similar biostructure as the real stuff so provoke absorption by the cancerous cell, faking the real androgen. The syndrome can last 4 to 6 months with lower PSA results. After that one must start taking another antiandrogen or change to the second-line ones like Xtandi.

    Here are some materials for you to read and prepare the questions for your next meeting;

    https://pcri.org/-aawr-the-anti-androgen-withdrawal-response

    https://jhoonline.biomedcentral.com/articles/10.1186/1756-8722-1-21

    https://www.researchgate.net/publication/257461567_No_Androgen_Withdra

    wal_Syndrome_for_Enzalutamide_A_Report_of_Disease_Dynamic

    s_in_the_Postchemotherapy_Setting

    Best of lucks.

    VGama

    Appreciate the suggestions.

    Appreciate the suggestions.  Saw the dr yesterday, ordered a repeat bone scan (due to additional bone pain husband is experiencing), will do a prostate specific PET scan when the technology comes to our hospital (November) and moving from Casodex to Xtandi.  

  • Chuckect
    Chuckect Member Posts: 45
    hi sid

    my PSA was 550 when I was dxd,, chemo was the first treatment I had, and that got me down to PSA 50.. Then I went on zytiga, prednisone, lupron, xgeva, oxycodone, zoloft and this got me down to PSA 7.5, and i am PSA 24 now.. That all took place from Jan, 2017 to present day.. i'm 81 yrs old and looking fwd to a long cold winter and then a beautyful spring.. keep posting and enjoy all the time you and your spouse have together.. also, check out the chat-room there are some interesting folks there.. good luck and enjoy life !!

  • Sidtippy2
    Sidtippy2 Member Posts: 37
    edited September 2018 #15
    Thanks for sharing your

    Thanks for sharing your background, very helpful.  What type of chemo did you start on? 

    We did see urologist this week and he will start him on Xtandi, once approved by insurance, and take off Casodex.  He had a repeat bone scan which thankfully showed no new spots.  We knew his PSA would start going up again, oncologist told him it would not get down to normal, but we were hoping the firs treatment would last longer.  He was on casodex for 6 months of monthly injections, and he's also on Lupron every 6 months.

    I sure appreciate this site, I've learned far more about Lupron here than from dr.  I was getting so worried about hubbys confusion and forgetfulness, he's 58 but some days seems much older.  He is amazingly positive most days, though he's hitting most of the side effects I've read about...extreme fatigue, weight gain, breast tenderness, and of course the total loss of libido etc.  But overall, it could be worse and we are so relieved that bone scan wasn't worse even with increased PSA.

    Always appreciate any insights or wisdom!

  • Georges Calvez
    Georges Calvez Member Posts: 546 Member
    Forgetfulness

    The forgetfulness is weird and it happens with Firmagon as well, I have to make a list before I go shopping even if it is only for less than a few things or I might forget completely why I am there, but I can add up the till roll easily so that bit of my brain is completely unaffected.
    I can do dates, etc but it is a bit hit and miss on what I had for dinner.

  • Sidtippy2
    Sidtippy2 Member Posts: 37
    edited September 2018 #17
    We're still waiting to get

    We're still waiting to get started on the Xtandi.  I forgot to ask the dr about the Lupron, I assume he will stay on it...any opinions on that?

     

  • VascodaGama
    VascodaGama Member Posts: 3,526 Member

    Sid,

    I read your other thread but I prefer to give you my opinion in this your initial post where you shared details of your husband's case. Resuming; the PSA "started at 1550 and over 6 months of tx with Casodex and Lupron came down to 22.  then went up to 24, then 26 and yestready was 96".

    In my opinion, the last increase certifies the refractory status. We have discussed the matter in above post. Your husband should stop the Casodex the soonest and look for a substitute such as Xtandi. Lupron should be taken continuously with the newer antiandrogen.

    Best wishes,

    VG

  • Sidtippy2
    Sidtippy2 Member Posts: 37

    Sid,

    I read your other thread but I prefer to give you my opinion in this your initial post where you shared details of your husband's case. Resuming; the PSA "started at 1550 and over 6 months of tx with Casodex and Lupron came down to 22.  then went up to 24, then 26 and yestready was 96".

    In my opinion, the last increase certifies the refractory status. We have discussed the matter in above post. Your husband should stop the Casodex the soonest and look for a substitute such as Xtandi. Lupron should be taken continuously with the newer antiandrogen.

    Best wishes,

    VG

    Thank you for responding, I

    Thank you for responding, I didn't realize the refractory impact could cause such a significant increase.

  • Sidtippy2
    Sidtippy2 Member Posts: 37
    Saw physician yesterday, does

    Saw physician yesterday, does not believe increasing PSA is refractory, believes there is new cancer.  CT of chest, abd and pelvis scheduled for Monday.  I asked about Casodex, keeping him on it until post scans. If scans aren't much worse, will change from casodex to Xtandi.  If it is much worse, will move to chemo.  Will update with results

  • Georges Calvez
    Georges Calvez Member Posts: 546 Member
    Luck

    Hi Sidtippy2,

    Best of luck, both of you are doing all that you can.
    I am not a believer in prayers but fingers crossed for you.

    Best wishes,

    Georges