Hope??

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  • VascodaGama
    VascodaGama Member Posts: 3,501 Member
    Xtandi clinical trial

    Xtandi has been approved for administration in CRPC patients (Castration Resistant prostate cancer). This is not your husband's status but he can benefit from a protocol using this drug together with radiation. Clinical trials are safe and free of charge. However, you should check if the trial his doctor is proposing doesn't interfere/prohibit other treatment (such as chemo, brachytherapy, proton radiation, etc) that could turn to be the best option for his case. Another aspect you have to consider is that these trials usually are done for comparing two cohorts of participants (with and without the drug) so that one should certify that one doesn't falls into the placebo group.

    You can find details in this link;

    https://www.cancer.gov/about-cancer/treatment/drugs/enzalutamide 

    One trial involving radiation with Xtandi is here;
    https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/view?cdrid=772357&version=HealthProfessional&protocolsearchid=6645739

    Xtandi (enzalutamide) is an antiandrogen of the class of the traditional Casodex. It is more refined and acts at intratumoral level (within the tumor). Typically it is administered in combination with a LHRH agonist like Lupron. These are drugs of the hormonal arsenal. They are paliative and manage to control cancer's advancement, but do not lead to cure. Your husband should investigate on radical treatments that may eliminate the cancer. Probably a protocol of HT plus RT. You should discuss about this with the doctor.

    Best,

    VG

  • Sadie marie
    Sadie marie Member Posts: 63
    edited September 2016 #23
    Hope??

    back to Doctor who said he wasn't going for cure so that brings me back to no hope

  • VascodaGama
    VascodaGama Member Posts: 3,501 Member
    edited September 2016 #24
    No cure? Why not?

    Sadie

    Do not give up. Get a second opinion from another doctor. Which data does the doctor have that made him to give up in a treatment with intent at cure?

    Get the answers.

  • Sadie marie
    Sadie marie Member Posts: 63
    Hope??

    i guess since it was in lymph nodes he mentioned to me 5 years would be lucky maybe 2 but he did have someone that was 10 years. I did not tell my husband.

  • Sadie marie
    Sadie marie Member Posts: 63
    edited September 2016 #26
    Hope??

    i want to thank everyone for being so positive and sorry for the pessimism I just feel the doctoris negative talk course he said I was only hearing what I wanted

  • VascodaGama
    VascodaGama Member Posts: 3,501 Member
    Work together to find the best

    How far is the doctor correct by saying that you are hearing only what you wanted? He might be right. You need to get evidence about that to stop the worries. How about gathering all existing data/reports and having a consultation with another doctor? I believe your husband would accept that.

    From your posts, what surprises me is that the doctor is discussing the treatment with you not at the presence of your husband (I guess), so that you avoid telling him upsetting comments. You need to work together in finding the right way. Something that is acceptable for both of you.

    Please note that we are not doctors. Our advices are solo based on own experiences. We have confronted the same issues with our families.

    Best wishes for peace of mind.

    VG

     

  • Sadie marie
    Sadie marie Member Posts: 63
    edited September 2016 #28
    We went in for surgery

    We went in for surgery consult Doctor believed already in lymph nodes he would try to do surgery if lymph nodes clear if not he would stop at that time he stated to both of us if nothing was done it wouldn't even be five years and when I stated wasn't there any hope he said it was a huge mountain to climb. And I said you said it wouldn't be five years that's when he stated you are only hearing what you want I said if you do nothing. On day of surgery when he came to talk to me and tell me and my daughter it was in lymph nodes and for him to come in for lupron shot next day he again stated not 5 years maybe a good 2 but he did have one patient with metastasized and they had had it 10 years no word on climbing a mountain. The next day for shot he said he had found in 2 of 7 on one side and the other side was sent to test. No word on outlook no mention of mountain climbing just might see if he could get in trial of xtandi at same time as lupron. I am not making decisions.

  • VascodaGama
    VascodaGama Member Posts: 3,501 Member
    edited September 2016 #29
    Deciding on the unknown is difficult

    Sadie,

    In my opinion,, you and your husband should be the ones making the decisions. Not the doctor. His work is to diagnose the problem, inform you and then recommend a treatment. On your side, you need to educate on the matter and chose what you like. The treatment will be administered only after you and your husband has agreed and sign a contract, informing that you are well informed about the therapy, its risks and consequences and that you will be relieving the doctor and the hospital of any wrong doing if the outcome is not the expected.
    The only matter that is not on your side is any malpractice by the doctor or hospital staff.

    You do understand that researching and second opinions from specialists are important if we do not know much about what we have been recommended. These should be done by an independent physician not from the group of the initial doctor, because those might be biased. Once satisfied with gathered information then you are prepared to choose what you want and where to do it.
    Many patients for whatever reason it may be decide to follow his doctor's recommendation blindly. This is the mode used by your husband and it is not bad too. However he cannot blame the doctor later for not giving preferences to other forms of treatment or even explaining it in detail.

    I do understand that 60 hours a week of work leaves you without much time for spares. Cancer requires loads of attention and dedicated time turning our lives upside down. Through my posts I am trying to help in lowering your fears, but it seems that I have increased them. I am sorry if such happened. Back in 2000 I had similar doubts and suffer till I found a satisfactory way to deal with the problem. That took me 3 months since diagnosis.

    You need to find a way to stop worrying and believe in something.

    Best wishes,

    VG 

  • Sadie marie
    Sadie marie Member Posts: 63
    edited September 2016 #30
    Hope??

    He got a Lupron shot Friday a nd was just told not a cure and effects was male menopause I gave him a list of things to do today like get his results and maybe go to American cancer to help him navigate through institutes that deal with prostate cancer and see where we can get second opinion with our insurance from what I have read online some do quite well and some sights say several or many years but there are others that say 18-24 months which is not tomorrow but feels like it

  • Will Doran
    Will Doran Member Posts: 207
    edited September 2016 #31
    MRI, and Antiandrogens

    Sadie, 

    My MRI's did not show that I had a lymph node involved.  My Prostate lit up bright red ( I saw the images), but the spot in the one lymph node was too small for the MRI to show it.  That was found in the post surgery pathology.  Pre surgery, I was told two years if I did nothing.  I am now three years after Diagnosis.  Doctors are talking future plans for 10+ years.  My PSA is still considered undetectable even though I have been off the Lupron for about 10 months at this time, and my testosterone levels are back up in the normal range---320, with normal range being 250 - 1,100.  My testosterone was down to 17 at it's lowest (as I stated before).  If my PSA comes back up to a "danger" point, then I will have to go back on Lupron, or maybe go through a surgical castration.  However if my cancer should become Castration Resistant, then I will have to go on Casodex or Xtandi. As VG said, "This is not your husband's status but he can benefit from a protocol using this drug together with radiation."   I had Lupron for two years and 8 weeks, 5 days a week, of Radiation as "clean up", post surgery.  My doctors have expalined that those drugs (Casodex & Xtandi, and there are a couple others--names have slipped my mind) surround the cancer cells and make the cancer cells think there is no testosterone to help them grow.  That's a very simplistic explanation, but what My doctors told me in the simplest terms.  In fact the doctors group I am with was actually in on trials for Xtandi (I think that's the one he said).  It can be , as was stated by VG, given with Lupron.  My doctor said this is all off in the future, for me, if needed.  I was told all about this even before I had the surgery, by my Chemo Oncologist.  She said I might have to stay on Lupron for the rest of my life, or have the surgery.  But for now, I'm holding my own.  It's a constant worry, but I try very hard to go one day at a time and enjoy every minute with my wife.  We do yard work together, go for drives, exercise together, etc.  Some how we got over the initial shock of all this and have tried to move on together and live one day at a time. 

    Please, dont' give up hope.  Keep after this and fight hard.  Both of you. Look at every day as the gift that it is. 

    Love, Peace and God Bless

    Will

  • Gleason 9 fight its not his time
    edited September 2016 #32

    Hope??

    He got a Lupron shot Friday a nd was just told not a cure and effects was male menopause I gave him a list of things to do today like get his results and maybe go to American cancer to help him navigate through institutes that deal with prostate cancer and see where we can get second opinion with our insurance from what I have read online some do quite well and some sights say several or many years but there are others that say 18-24 months which is not tomorrow but feels like it

    Hope can be hard ??

    My boyfriend was resently diagnosed with advanced prostate cancer.  PSA 40 to 48 in four weeks.  Gleason grade 9.  He is 62 with no symptoms.  Urologists stated very aggressive, however starting week seven of this journey and will finally get bone scan and cat scan.  Meet with urologist day after.  Hope Hope Hope thats what everyone tells us.  We are trying to be hopeful but honestly the doctors make that tough.  I got his results first and chose to tell my boyfriend, one of the hardest things Ive ever done.  We cry a lot both very scared I have done extensive research. But am new to this.  We want a second opinion but would have to wait another four weeks for appointment.  So i have contacted the Cancer Treatment Center of America.  Waiting to see if insurance will cover it.  Just wanted to let you know I fully understand your feelings and frustration.  I at this point feel helpless also.  Maybe you and I can work on that together so we can better support the men we so dearly love.  Maybe we are their hope. Best wishes and luck.

  • Sadie marie
    Sadie marie Member Posts: 63
    edited September 2016 #33
    Hope??

    Husband went to pick up results told he had to wait 2 weeks for it to go through channels really frustrating how are you suppose to get 2nd opinion one thing though his original psa was 87 and day before lymph node dissection it was 82 

  • Sadie marie
    Sadie marie Member Posts: 63

    Hope can be hard ??

    My boyfriend was resently diagnosed with advanced prostate cancer.  PSA 40 to 48 in four weeks.  Gleason grade 9.  He is 62 with no symptoms.  Urologists stated very aggressive, however starting week seven of this journey and will finally get bone scan and cat scan.  Meet with urologist day after.  Hope Hope Hope thats what everyone tells us.  We are trying to be hopeful but honestly the doctors make that tough.  I got his results first and chose to tell my boyfriend, one of the hardest things Ive ever done.  We cry a lot both very scared I have done extensive research. But am new to this.  We want a second opinion but would have to wait another four weeks for appointment.  So i have contacted the Cancer Treatment Center of America.  Waiting to see if insurance will cover it.  Just wanted to let you know I fully understand your feelings and frustration.  I at this point feel helpless also.  Maybe you and I can work on that together so we can better support the men we so dearly love.  Maybe we are their hope. Best wishes and luck.

    Test

    did you get results yet

  • Old Salt
    Old Salt Member Posts: 910 Member
    edited September 2016 #35
    Some lessons learned

    Almost all of us were shocked when we received the CANCER diagnosis. At that point, we don't listen well to what the doctor(s) says. The information is all new and we may not have the proper background to understand the highly technical aspects of the disease and possible therapies. Therefore, we (old timers) generally recommend to

    have other people with us at all appointments; you mentioned a daughter. Can she come along?

    Take notes (both husband and wife, independently) and compare notes once home. It is very difficult for one person to catch all that a doctor says.

    Ask if you can record the conversation; that makes it easier to figure out later on what went on in the office. In that case, you won't have to take notes, obviously.

    Ask for copies of all test results. Even though you may not be able to decipher the information, we can help.

     

    PS: Perhaps the lower PSA (82 vs 87) is due to the Lupron having an effect.

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

    Some lessons learned

    Almost all of us were shocked when we received the CANCER diagnosis. At that point, we don't listen well to what the doctor(s) says. The information is all new and we may not have the proper background to understand the highly technical aspects of the disease and possible therapies. Therefore, we (old timers) generally recommend to

    have other people with us at all appointments; you mentioned a daughter. Can she come along?

    Take notes (both husband and wife, independently) and compare notes once home. It is very difficult for one person to catch all that a doctor says.

    Ask if you can record the conversation; that makes it easier to figure out later on what went on in the office. In that case, you won't have to take notes, obviously.

    Ask for copies of all test results. Even though you may not be able to decipher the information, we can help.

     

    PS: Perhaps the lower PSA (82 vs 87) is due to the Lupron having an effect.

    Hadn't had shot yet. Doctor

    Hadn't had shot yet. Doctor didn't talk about surviving when we did go in for shot. A friend of ours went with us. I know bone scan isn't most accurate but it was clear just one spot on hip which was xrayed and cleared. So if there is micro metastatisism how long before it shows up?

  • randy_in_indy
    randy_in_indy Member Posts: 496 Member

    Huge mountain to climb

    Sadie,

    Welcome to the board. I think you are upset with the diagnosis and anxious with the comments from the doctor. It may be an huge mountain to climb but this is not the end of the world. There are several types of treatments for prostate cancer (PCa) administered with intent at cure or to control it. There is hope and you should trust it. Your man will do good.

    The size of the prostate (130 cc) is huge. This may turn surgery unpractical if done with robots/laparoscopy but the open modality can be done; however, the type of intervention dependent on the patient's status and the clinical stage, which results are imperative to decide on an option.

    You commented above on "frozen dissection today". What does it mean? His your husband undertaking cryosurgery?

    The urine urge issues and ED could be due to the size of the gland. It may be pressing up the bladder muscles (urgency) and constricting the seminal vesicles (passage and ejaculation control of semen). The PSA also would be larger than the level of a normal 25 cc gland. Another fact is that the big prostate may have such size due to benign hyperplasia, typical of man of all ages, which elevates the PSA naturally.

    The Gleason 7 (3+4) and 8 (4+4) means they have found cells with grade 4, therefore with a more aggressive behaviour. These tend to spread faster but can be treated. In any case, I wonder why the doctor commented about lymph nodes involvement. Has your husband done any image study apart from the bone scan? Is there any MRI?

    Can you reproduce here the contents of the biopsy's pathologist report? How many positive cores have they found?

    I would recommend you to read about the disease and the treatments. Make a list of questions to expose in your next consultation and take notes or tape the conversations. Do not decide on any thing without understanding fully the contents. Getting second opinions is common in cancer cases.

    Here are some links I believe being helpful to you;

    About PCa:

    http://www.ccjm.org/index.php?id=105745&tx_ttnews%5Btt_news%5D=365457&cHash=b0ba623513502d3944c80bc1935e0958

    About a List of Questions: http://csn.cancer.org/node/224280

    http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

    About nutrition:

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

    Best wishes and luck in his/yours journey.

    VGama  

    Long time no post for me.....VascodaGama

    Good to see a familiar face (VascodaGama) still on here from 2010.  Not sure if you remember me.  I had a short stint from 2009 to probably 2012 or so....There is hope Sadie and VascodaGama is a valuable resource.   I was Stage: pT3a, pNo, pMX   My gleason was a 6 pre OP but then became a 7 from the post-op pathology.  I am now 7 years without any positive PSA.   Go to my profile and ready my journey for more details.   Best of fight!! Randy in Indy

     

  • Sadie marie
    Sadie marie Member Posts: 63
    edited September 2016 #38
    Hope??

    best place for second opinions and can you get without records because it's going to take two weeks to get records. We see oncologist tomorrow

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    edited September 2016 #39
    .

    if you are able, simply go,  and ask the secretary for a copy of the records

  • Sadie marie
    Sadie marie Member Posts: 63
    edited September 2016 #40
    We tried she said it had to

    We tried she said it had to go through channels

  • Sadie marie
    Sadie marie Member Posts: 63
    edited September 2016 #41
    Hope

    went to oncologist today. Very positive. Thinks it is regional no chemo but lupron and radiation. First bone scan was negative is ordering a second one to confirm. Should we be worried.