PSA 1550

13

Comments

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    edited April 2020 #42
    Welcome back

    Hi Sid,

    Welcome back, as you can see most of the regulars are still here.
    I am sorry that you are not coming back under better circumstances.
    The best thing you can do now is try and manage your husband's illness.
    Hopefully you will be successful, some men do manage to fight it off for quite a while.

    Best wishes,

    Georges

  • Sidtippy2
    Sidtippy2 Member Posts: 37
    Thanks to you both for

    Thanks to you both for responding, it is very good to see familiar names on the board.  And you are right VG, Joe is all about quality of life.  When he had the stents placed they had discussed nephrostomy tubes and he was not at all interested in that option, even though it would have been relatively short term.  He wants to be comfortable and he doens't want to linger or prolong life if quality of life is further compromised.  He has been amazing for these 2 1/3 years since diagnosis, has an amazing attitude, is at peace (as much as possible) with what the future likely holds.  I support him in all of these decisions, it just feels like things are progressing so fast the last few weeks, it's very unsettling.  

  • Sidtippy2
    Sidtippy2 Member Posts: 37
    We saw oncologist today, PSA

    We saw oncologist today, PSA is now at an all time high of 2225, higher even than when he was diagnosed.  Joe is very very fatigued, showering wears him out, nauseaous and minimal appetite, general achiness and just doesn't feel good.  Scheduled to start new study with Taxotere and Ketruda/placebo a week from today.  I thought I had seen some kind of a life expectancy calculator completed by entering PSA values, does anyone know what it's called or how to locate?  

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    PSA and progression of prostate cancer
    Hi Sid,

    As far as I know there is no simple correlation between the PSA level and the life expectancy.
    PSA is a secondary marker, there is no direct correlation between the level of PSA and the level of the disease.
    Some men have a very high PSA and quite a low disease burden, others have a low PSA and extensive stage IV disease, there is no exact correlation, it is indicative at best.
    I would have to say that Joe probably has quite extensive metastatic disease as it is affecting him severely.
    Doctors do use the PSA doubling time to try and track the progress of primary or recurrent prostate cancer, maybe that was what you were thinking of?
    https://www.mskcc.org/nomograms/prostate/psa_doubling_time
    Best of luck with the chemotherapy.

    Kindest regards,

    Georges
  • VascodaGama
    VascodaGama Member Posts: 3,549 Member
    Life expectancy depends of the overall body health

    I agree with Georges. The PSA is irrelevant at this stage, particularly in regards to patient's life expectancy. What counts is how far damage has been caused to vital organs, like the liver, the kidneys, and the effects of the medication in his cardiovascular status. Periodical blood tests can give you an idea on his health and body performance. A PET scan could provide info on cancer location.

    Chemotherapy is typical in similar advanced cases. Taxotere (docetaxel) is the most recommended palliative drug in systemic PCa treatment. It provides some control on the advancement of the disease. Keytruda makes part in immuno-therapies. This is used together with chemo drugs as it reinforces the action of the chemo. However, the treatment is not free of risks and the side effects could be hard to sustain. Again, one should consider the value of the treatment against quality of life.

    I am sorry for the suffering you both are enduring at such young age. I hope Joe manages to get through the treatment in one piece.

    https://www.urotoday.com/conference-highlights/asco-2019-annual-meeting/asco-2019-prostate-cancer/112936-asco-2019-pembrolizumab-plus-docetaxel-and-prednisone-in-abiraterone-or-enzalutamide-pretreated-patients-with-mcrpc-keynote-365-study.html

     

    Best wishes.

    VGama

  • Sidtippy2
    Sidtippy2 Member Posts: 37
    edited April 2020 #47
    Thanks to you both, I value

    Thanks to you both, I value your perspective.  Georges you are right, I was thinking of the doubling time.  PSA certainly is confusing, it drops nicely and consistently when he's responding to treatment, and then starts to go up as he stops responding.  Everyone says not to worry about the results but it's hard not to pay attention to it.       We are trying to take things one day and one step at a time.  As always, I appreciate your support.

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,765 Member
    edited April 2020 #48

    Life expectancy depends of the overall body health

    I agree with Georges. The PSA is irrelevant at this stage, particularly in regards to patient's life expectancy. What counts is how far damage has been caused to vital organs, like the liver, the kidneys, and the effects of the medication in his cardiovascular status. Periodical blood tests can give you an idea on his health and body performance. A PET scan could provide info on cancer location.

    Chemotherapy is typical in similar advanced cases. Taxotere (docetaxel) is the most recommended palliative drug in systemic PCa treatment. It provides some control on the advancement of the disease. Keytruda makes part in immuno-therapies. This is used together with chemo drugs as it reinforces the action of the chemo. However, the treatment is not free of risks and the side effects could be hard to sustain. Again, one should consider the value of the treatment against quality of life.

    I am sorry for the suffering you both are enduring at such young age. I hope Joe manages to get through the treatment in one piece.

    https://www.urotoday.com/conference-highlights/asco-2019-annual-meeting/asco-2019-prostate-cancer/112936-asco-2019-pembrolizumab-plus-docetaxel-and-prednisone-in-abiraterone-or-enzalutamide-pretreated-patients-with-mcrpc-keynote-365-study.html

     

    Best wishes.

    VGama

    Tax

    sid,

    If your husband goes on the Taxotere in or out of combination, it is a harsh drug, like virtually all chemo agents. Expect additional weakening and a variety of other side-effects.  Blood chemistry almost always gets skewed, especailly white and red blood counts.   Most people have some side effects, but which ones is not predictible beforehand, since they occur seemingly at random.

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    edited April 2020 #49
    Lots of media waffle /

    Lots of media waffle / Facebook stuff and very little science outside the petri dish.

     

    User has one post promoting herbal stuff.

     

    Caveat Emptor

  • Sidtippy2
    Sidtippy2 Member Posts: 37
    Round 2 of Taxotere

    It's been a rough couple of weeks.  the first week after the first dose of Taxotere was just awful.  Very sick, all the GI symptoms and incredible weakness in additional to ongoing fatigue.  Second week he felt a little better and the past week was pretty good.  infusion today and he's already sick this evening.  PSA up to 2822 today.  Started stronger pain meds 10 days ago, Norco, which has helped a little. Rough road so far.

  • VascodaGama
    VascodaGama Member Posts: 3,549 Member
    edited May 2020 #51
    Could he stop chemo to allow recovery?

    Sid

    I can imagine the suffering you are through and I am sorry for that. I have been trying to help you and others here in the forum with opinions I got from own experience or acquired from researches and now I feel frustrated for having nothing to offer.

    Chemotherapies are known to cause nasty symptoms. Same patients have to stop the infusions in the middle because the treatment become unbearable. I believe that his doctor is taking care on the matter but his work is to treat according to their institutional recommendations. Joe should follow his instincts and probably chose quality of living instead of continuing to knock down the cancer with this chemo that is not showing to be effective (as seen by the increasing PSA).

    He needs to recover from the side effects before continuing with the treatment. I wonder about his liver enzymes.

    I hope things get better and gives you some relief.

    Best wishes.

    VG

     

  • Sidtippy2
    Sidtippy2 Member Posts: 37

    Could he stop chemo to allow recovery?

    Sid

    I can imagine the suffering you are through and I am sorry for that. I have been trying to help you and others here in the forum with opinions I got from own experience or acquired from researches and now I feel frustrated for having nothing to offer.

    Chemotherapies are known to cause nasty symptoms. Same patients have to stop the infusions in the middle because the treatment become unbearable. I believe that his doctor is taking care on the matter but his work is to treat according to their institutional recommendations. Joe should follow his instincts and probably chose quality of living instead of continuing to knock down the cancer with this chemo that is not showing to be effective (as seen by the increasing PSA).

    He needs to recover from the side effects before continuing with the treatment. I wonder about his liver enzymes.

    I hope things get better and gives you some relief.

    Best wishes.

    VG

     

    Thank you Vasco, I have SO

    Thank you Vasco, I have SO appreciated your kind and wise words since i discovered this forum.  I believe you are right, I don't think Joe will likely choose to do too many rounds if he feels this badly each time (and I knowit's likely he will feel worse each time).  His biggest fear about stopping is given how aggressive this cancer has been, that he will not live much longer...maybe months.  And while we have faced the reality of his prognosis since the beginning, I expect it is human nature to always hope to be the exception and hopefully live much longer than the odds would predict.  

    So far his labs have looked ok, liver and kidney function are good, CBC is all normal.  Just that darn PSA that won't come down.   I had hoped PSA might come down a little after his first round, maybe that was unrealistic.  

     

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    edited May 2020 #53
    PSA is an indirect marker

    Hi Sid,

    Everyone should try and remember that PSA is an indirect marker. There is no simple direct relationship between the level of PSA and how bad the PCa is.
    It is indicative but the high level of PSA in Joe's case seems to indicate that the underlying disease is quite severe.
    You have to hope that the treatment will start to succeed although the chances do seem slim.
    I suspect that the doctors will suggest a change of direction if things continue along this course.

    Best wishes,

    Georges

  • Antelope68
    Antelope68 Member Posts: 1
    edited May 2020 #54
    agree with vascoda

    dx 15 yeqrs ago,psa 5 psa 6 mo ago 2500 now after chemo 33. you gotta fight the beast eith everything you have,and the will to survive.

  • Sidtippy2
    Sidtippy2 Member Posts: 37
    Side effects?

    I have a new question.  Joe has had 2 rounds of Taxotere and either Keytruda or placebo.  Also on prednisone, Tamsulosin, senna, and many vitamins.  Compazine and hydrocodone with acetaminophen as needed.  About a week ago he started having new/different  symptoms...restless, agitated, unsettled, heart racing, and felt like couldn't get good breath in (but is not in resp distress or short of breath).  I called clinic and they thought maybe the prednisone, but he's been on it for a year.  Sound familiar to anyone?  

  • VascodaGama
    VascodaGama Member Posts: 3,549 Member
    edited May 2020 #56
    Prednisone

    Sid

    I hope you get some feedback from users. I have no experience with Prednisone but it seems to be a difficult medicine as we read the reports from other survivers.

    In fact the side effects you listed above are all indicated at the drug's site.

    It is no surprise that one could do worse with the drug because of its immunosuppressant capabilities. Thought Joe may be taking it as an anti-inflammatory (tipical in combination treatment) this drug can easily interfere in normal body function. Agitation dizziness and troubled breathing are common. The drug "disbalances" the hormonal system.

    I am glad for knowing that Joe managed to get into one piece after chemo. I hope he recovers soon to a more comfortable quality of life.

    Best wishes.

    VG

     

  • Clevelandguy
    Clevelandguy Member Posts: 791 Member
    edited May 2020 #57
    Same symptoms

    Hi All,

    I took an Steroid for a shoulder injury and I quit taking it after several days because at night it made me feel like I could not get a complete breath.  No shortness of breath or other breathing problems during the day but just at bedtime.

    Dave 3+4

  • Clevelandguy
    Clevelandguy Member Posts: 791 Member
    For Sidtippy

    Hi,

    Tell your husband to hang in their.  The guy behind my house just completed 13 rounds of chemo, had sores in his mouth, numbess in his hand and feet.  He told me that his last scan showed no evidence of Pancreatic cancer and he is one happy camper.  I'm sure he went through hell and wanted to quit on more than one occasion but he stayed the course. Keep on keepin on...........

    Dave 3+4

  • Sidtippy2
    Sidtippy2 Member Posts: 37
    edited May 2020 #59

    Same symptoms

    Hi All,

    I took an Steroid for a shoulder injury and I quit taking it after several days because at night it made me feel like I could not get a complete breath.  No shortness of breath or other breathing problems during the day but just at bedtime.

    Dave 3+4

    That's interesting Dave,

    That's interesting Dave, because Joe's issues with feeling like he can't breathe are worse at night.  

    Thanks to you all for your thoughts.

    Sid

  • Sidtippy2
    Sidtippy2 Member Posts: 37
    I could use some wisdom

    Hello everyone, it's been a while since i posted and Joe continues to struggle.  He has only been able to get through 3 rounds of chemo (Taxotere) because he's been so sick.  The last week or so he has really seemed to decline.  He is very very weak and exhausted.  I have to help him dress and he is having a hard time getting out of chair.  Last couple of days he has started with new back pain (he had mets to spine on original dx) and significant leg weakness, can hardly lift legs and shuffles when he walks.  His appetite is poor, nothing sounds good, still has nausea and occas vomiting and isn't drinking as well as usual.  His labs overall look ok, except most recent PSA is 5279 (up from 3300 four weeks ago).  He is tired of being tired and when we saw dr yesterday Joe basically said he was done with treatment since nothing seems to be working.  The dr was a little less empathetic than I'd have hoped, kept asking if he need to see a psychiatrist/counselor.  Good grief, yes, he's depressed but we know why and he's not interested in talking to stranger about it.  Then he said "well do you want to talk about hospice?"  Joe doesn't seem to want to do that either.  They gave him IV fluids and started on antibiotic (he's running a low grade temp) and he goes back Monday and thurs for more fluids.  It fees like  another switch has flipped and that he's really progressing quickly.  

    Does this sound like typical progression to those of you who are way more experienced than me?  I'm always afraid that I'm missing something.  

    Any insights are so appreciated.

  • Clevelandguy
    Clevelandguy Member Posts: 791 Member
    Trial tests?

    Hi Sidtippy,

    Any chance your husband could get in on some clinical trials of genetic engineered drugs that use the immune sustem to fight cancer?  Sounds like the chemo is kicking his as. without much benefit.

    Dave 3+4