Hope??

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  • GeneRose1
    GeneRose1 Member Posts: 64
    edited February 2017 #82

    Now saying in bones. In the

    Now saying in bones. In the hip area where they took X-ray and cleared originally. Does anyone know if this is treatable. Back looking into research with Xtandi.

    In the Bones

    Sadie, That's precisely what's happened to me. I had surgery to remove my prostate in April 2014 and then had several months of radiation treatment and hormone blocking (ADT) therapy with an injection called Firmagon. That brought my PSAs down to 0.06 which is fantastic. I highly recommend you go online and research side effects for any type of ADT (Firmagon or Lupron); especially the part about Type 2 Diabetes. I was fine for a little over two years and now the cancer is back with a vengence. Even though it's still prostate cancer, it has reestablished itself in my spine and pelvic area and is growing at a rapid clip. I start a new program a hormone blocking therapy tomorrow with a drug called Casodex followed with injections of Lupron. That should get everything under control and help start rolling the cancer back. There are treatments for prostate cancer in the bones - particularly a drug called Xofigo and another that's just coming out called Lu-177. I highly recommend you review the discussion board and research VascodeGama's and Old Salt's posts on these topics. When I go see my oncologist, I always have a bunch of questions written down to ask him and also print out VGama's and Old Salts posts for further discussion. The good news for your husband is that there are a lot of new treatments coming out. The trick is to get it under control and stay vigilent for any changes. Once there's any upticks at all, get with your oncologist to get it back under control. Also, there is a book written by Dr. Patrick Walsh called, "The Guide to Surviving Prostate Cancer". It is an encyclopedia of knowledge on EVERYTHING related to prostate cancer and can be picked up at your local bookstore. There are tons of guys who are in their 70s and 80s who have been fighting prostate cancer since the 1990s. They don't panic and just take it one challenge at a time. The guys who die two or three years after they're diagnosed are usually the ones who just curl up in a ball and give up. Don't let that happen. There's no reason for it and I'm confident your husband has got many, many years of life ahead of him. I sincerely hope this post does some good and I look forward to hearing from you in the future. Best/Gene

  • GeneRose1
    GeneRose1 Member Posts: 64
    edited February 2017 #83

    January PSA down to .17. In 4

    January PSA down to .17. In 4 months PSA has gone from 87 to .17. Is this fast enough and how much lower should it go. 

    January PSA Down to .17

    Sadie, those are superb results and indicates the effectiveness of the therapy. For me, my PSAs went down to 0.06 and stayed there for a couple of years. That is absolutely wonderful news. He will probably be getting his PSA checked every three months from now on. Vasco De Gama wrote a nice post about his PSAs and the various things that could bump up the numbers from time to time and you should check it out. I'm very happy for you and hope he has many, many years with a very low PSA.

  • Clevelandguy
    Clevelandguy Member Posts: 795 Member
    Good results

    Hi,

    If his PSA went from 87 to .17 sounds like to me that he got the Xtandi or there was a mistake in the PSA test.  Hopefully the next test will also show a low PSA.  Good luck.............

    Dave 3+4

  • Sadie marie
    Sadie marie Member Posts: 63
    Can PSA go down but bone mets

    Can PSA go down but bone mets increase at the same time?

  • VascodaGama
    VascodaGama Member Posts: 3,557 Member
    Yes it can

    I wonder the reason for your inquire. In any case, I would say it to be possible.

    Aggressive Gleason rates produce lesser PSA serum and if not dormant it could metastasize further. One may find additional spots in bone while seeing the PSA stable.

     

  • Sadie marie
    Sadie marie Member Posts: 63
    6 month report

    PSA .07 bone mets 4th spot that appeared in December gone others degree of activity decreased and intensity decreased. Sounds good.

  • Old Salt
    Old Salt Member Posts: 984 Member
    edited March 2017 #88
    Does sound good!

    How is your husband feeling?

     

     

  • Sadie marie
    Sadie marie Member Posts: 63
    Old Salt said:

    Does sound good!

    How is your husband feeling?

     

     

    Feeling pretty good. Does get

    Feeling pretty good. Does get fatigued so he is changing when he takes the blind trial medicine to see if that helps. His testosterone is down to.35 so he does get a little disapppointed with loss of libido. Otherwise he is very positive 

  • Sadie marie
    Sadie marie Member Posts: 63
    In March PSA down to .07 and

    In March PSA down to .07 and bone involvement down to 3 with less intensity. Question, I have read reaching this low of PSA in 6 months is a bad thing, is this true?

  • Old Salt
    Old Salt Member Posts: 984 Member

    In March PSA down to .07 and

    In March PSA down to .07 and bone involvement down to 3 with less intensity. Question, I have read reaching this low of PSA in 6 months is a bad thing, is this true?

    Great report!

    Those results look great to me (not an MD).

    How could reaching such a low PSA in six months be a bad thing? 

  • Sadie marie
    Sadie marie Member Posts: 63
    edited May 2017 #92
    Not sure just was reading a

    Not sure just was reading a report that stated before 7 months reaching .20 was not a good prognosis however if he is getting trial drug not sure if something like that was taken into account

  • VascodaGama
    VascodaGama Member Posts: 3,557 Member
    Present and initial status

    Marie,

    Taking into consideration his initial status shared by you in your first post of this thread, the present results sound good to me. Can you provide a copy of the report you talking about?

  • VascodaGama
    VascodaGama Member Posts: 3,557 Member
    Many years of quality living

    Marie,

    I do not know exactly what his treatment includes but your concern regarding the study of your link (short time to nadir PSA of <9 months, reaching <0.20 ng/ml) could apply to your husband's case if the patients in the study had the same type of PCa and included the same treatment protocol.

    Typically, Lupron alone drives the Testosterone down to castration levels in just two to three weeks. Once at this status the cancer becomes sort of indolent and its response to the treatment, as seen by the decrease in PSA, varies depending on the type of the cancerous cells. Some cells produce more PSA serum than others, or even produce zero PSA. In the case of your husband, his cancer has responded well to Lupron (plus something?) lowering the PSA from 87.0 to 0.07 ng/ml signifying a good result. The extent of the disease (number of metastases) may alter conclusions but it is not definite in concluding that such a patient would present treatment failure (refractory to ADT).

    You do understand that ADT is palliative (do not cure) and that the patient is at risk of experiencing refractory one day. In any case, the treatment can be continued substituting the drugs with the so called second-line HT drugs that are more refined to do the job. ADT can last many years providing quality living to the patient, before he starts chemotherapy.

    I hope my comment is of help to you.

    VG

  • Sadie marie
    Sadie marie Member Posts: 63
    edited May 2017 #97
    You are always very helpful

    You are always very helpful and informative. I read different articles as I find info on metastatic disease and wonder if they pertain. I do realize Lupron will not cure, he is in trial study and may be getting xtandi which would affect PSA I assume. I did read another article that had some promise for a cure. http://www.medpagetoday.com/hematologyoncology/prostatecancer/64834?pop=0&ba=1&xid=tmd-md&hr=trendMD He goes for his 3 month scan tomorrow. Hope the results continue to be good.

  • Sadie marie
    Sadie marie Member Posts: 63
    8-9 month scans

    8-9 month results PSA down to .03 bone scan mild interval improvement no new activity one appears more faint one appears smaller. Husband ask about testosterone but doctor said that fluctuates so not importan. I had him call back and ask it was .35. When they say testosterone should be below 20 or 30 do they mean .20 or 20. Actually Doctor didn't give him PSA husband had ask nurse to write down. Do these results sound good normal so so. I appreciate everyone's input.

  • Old Salt
    Old Salt Member Posts: 984 Member
    edited June 2017 #99
    Looks good!

    No, the doctor was correct. Hormone therapy should knock testosterone to below 30 (or so). So it's all good.

  • VascodaGama
    VascodaGama Member Posts: 3,557 Member
    The Testosterone

    To avoid confusion, try getting a copy of the results not just verbal information.

    The testosterone is usually measured in ng/dL or nmol/L depending on the laboratory (the PSA is traditionally in ng/ml). When we talk about T levels we tend to be referring to the Total Testosterone, however, this number varies depending on the quantity of the so called Free Testosterone (the one used by the body for particular functions) circulating in the blood. In any case, in PCa matters we use T value for reference purposes to verify the drugs effectiveness. The PSA is used to judge cancer activity; progress or remission.

    The normal level of T is between 250 to 800 ng/dL. Chemical castration in PCa treatments is T<30 ng/dL (<1 to 30). Any variation of T within the brackets is not important as far as T is maintained lower than 30 ng/dL. In clinical trials researchers use clinical chemical castration at T< 50.
    In hormonal treatments, some oncologists use lower values of T to regulate the treatment of certain patients. For instance, in intermmitent ADT they typically require to keep the patient at a T level of less than 20 ng/dL for at least one year, before stopping the administration of HT drugs (off-drugs period). I never saw a testosterone measurement of 0.20. The smaller value is indicated in <1 ng/dL.

    T values lesser than 250 ng/dL cause the majority of symptoms we read so many times in this board. When at chemical castration (T<30) one may expect many deficiencies such as: no sex drive, lean muscle building, cardiac function problems, lower brain function, bone loss, mood changes, etc. Long periods in castration risk irreversible recovery.

    Congratulations on another lower level of PSA. This reflects in our previous discussions. Your husband is in remission and we should hope that this can be kept during a long period.

    Best

    VGama

  • Sadie marie
    Sadie marie Member Posts: 63
    Update

    1 year since diagnosis and 11 months since start of Lupron and 8 months since trial start in August bone scan previously noted metastases are no longer definitively identified. The CT scan states since 5/30/17 the faint pelvic metastasis have become less dense and slightly improved. PSA down a little more to .02 and testosterone at .32. Urologist was surprised at results and assistant said he was responding the best to treatment than others. Any thoughts or opinion?