Hope??

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Comments

  • VascodaGama
    VascodaGama Member Posts: 3,557 Member
    Worried about what?

    This is the first post you use the word "Very positive". Congratulations. You have now two opinions to think about. One for hormonal therapy (the first doctor) and the second for a combination therapy of lupron plus radiation (from the oncologist).

    I do not understand on the need fo a repeated bone scan in such a short time of the previous. Why was that requested? Is there any doubt about the results of previous scan?

    I hope things move now in the right direction and that you feel more comfortable. You can also discuss with the oncologist to verify any possibility in participating in the clinical trial I provided the link above, that includes HT with Radiation (his suggection). You can also request for a multiparametric MRI to check lessions on soft tissue. The results would provide defined targets for radiation.

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

    Good luck,

    VG

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

    The only one doubting is surgeon who did lymph nodes and said around 2 years. Oncologist checked in with him and wants a second bone scan to confirm clear. Will Lupron interfere? What if second is not clean do you do third. What does it mean if not clear.? I was so positive yesterday today not so. 

  • Sadie marie
    Sadie marie Member Posts: 63
    edited September 2016 #44

    Hope??

    The only one doubting is surgeon who did lymph nodes and said around 2 years. Oncologist checked in with him and wants a second bone scan to confirm clear. Will Lupron interfere? What if second is not clean do you do third. What does it mean if not clear.? I was so positive yesterday today not so. 

    It was urology surgeon who

    It was urology surgeon who ordered 2nd bone scan

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,766 Member

    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.

    Progress

    I have not been following your posts too closesly, Sadie, but it seems that you and your husband are now getting some focus regarding treatments and his situation. The news you have related is about as good as it could have been:  The doctors think his disease is localized, and his bone marrow is clean.  Give thanks.

    Hormonal Therapy (HT) and radiation (RT) are what most of us here predicted he would receive.  Together, these can bring a man back from the brink, and give many years of wellness.  Hormonal treatments can have significant side-effects, but these (I have read) are largely manageble.

    Take this one day at a time, and cease being frantic.  As the news has filtered in, it has been mostly "good" news, in the sense that it could have been far worse.

    Know that he very likely has a lot of time left with you  -- a lot.  No one knows their remaining time: car wrecks, heart attacks, space debris falling through the ceiling.  Breath deep and be glad.  Schedule a relaxation activity for every day: Walk around the block, go have a good cup of coffee, buy a puppy --do something to escape from the worry. And do it every day; make it part of your routine.

    Fear is useless; what is needed is trust.

    max

  • Sadie marie
    Sadie marie Member Posts: 63
    edited September 2016 #46

    Progress

    I have not been following your posts too closesly, Sadie, but it seems that you and your husband are now getting some focus regarding treatments and his situation. The news you have related is about as good as it could have been:  The doctors think his disease is localized, and his bone marrow is clean.  Give thanks.

    Hormonal Therapy (HT) and radiation (RT) are what most of us here predicted he would receive.  Together, these can bring a man back from the brink, and give many years of wellness.  Hormonal treatments can have significant side-effects, but these (I have read) are largely manageble.

    Take this one day at a time, and cease being frantic.  As the news has filtered in, it has been mostly "good" news, in the sense that it could have been far worse.

    Know that he very likely has a lot of time left with you  -- a lot.  No one knows their remaining time: car wrecks, heart attacks, space debris falling through the ceiling.  Breath deep and be glad.  Schedule a relaxation activity for every day: Walk around the block, go have a good cup of coffee, buy a puppy --do something to escape from the worry. And do it every day; make it part of your routine.

    Fear is useless; what is needed is trust.

    max

    What about 2nd bone scan in a

    What about 2nd bone scan in a months time to confirm. What are the odds the 2nd one will show something?

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,766 Member

    What about 2nd bone scan in a

    What about 2nd bone scan in a months time to confirm. What are the odds the 2nd one will show something?

    No opinion

    Sadie,

    I am insufficiently versed in scanning techniques to give an opinion regarding your second-scan question.

    Remember to start a relaxation activity for yourself.

    max

  • Old Salt
    Old Salt Member Posts: 984 Member

    What about 2nd bone scan in a

    What about 2nd bone scan in a months time to confirm. What are the odds the 2nd one will show something?

    Insufficient info to determine 'odds'

    It's impossible to determine the odds because we have far too little information. What kind of bone scan was the first one; was the scan done properly; how 'expert' was the radiologist? Similarly, we don't know anything about the second scan. I wrote earlier that there are at least two different methodologies for bone scans.

    And even if we had more info, nobody here has done a comparative study to see if a second bone scan would yield another result. It just isn't a good question to ask under the circumstances.

  • Sadie marie
    Sadie marie Member Posts: 63
    edited October 2016 #49
    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.

  • VascodaGama
    VascodaGama Member Posts: 3,557 Member
    Not good news

    Marie

    The new finding on cancer in bone is not good news. This may restrict an option involving typical radiation treatment. In other words you have to think over again on the possibilities of each option. I am sorry for the situation.

    I wonder if you have obtain a copy of the exam this time to compare with the previous. Most probably they are different exams (different machines, techniques, contrast agents, etc), if not the results are fake or the radiologist is not the same man that interpret the images. Cancer does not grow to such sizes in such short period of time (one month). From your shared information I think it to be very ambiguous.
    Sincerely, in your shoes I would not trust the report and would look for a second opinion on the films from an independent radiologist, before proceeding further.

    Cancer in bone sets your man in the stage 4 classification. These patients are treated differently and may be restricted in certain clinical trials. You need to discuss everything again with his physicians. Surely he can start the hormonal treatment but the intent at cure is not in jeopardy.

    Get answers.

     VGama

  • Sadie marie
    Sadie marie Member Posts: 63

    Not good news

    Marie

    The new finding on cancer in bone is not good news. This may restrict an option involving typical radiation treatment. In other words you have to think over again on the possibilities of each option. I am sorry for the situation.

    I wonder if you have obtain a copy of the exam this time to compare with the previous. Most probably they are different exams (different machines, techniques, contrast agents, etc), if not the results are fake or the radiologist is not the same man that interpret the images. Cancer does not grow to such sizes in such short period of time (one month). From your shared information I think it to be very ambiguous.
    Sincerely, in your shoes I would not trust the report and would look for a second opinion on the films from an independent radiologist, before proceeding further.

    Cancer in bone sets your man in the stage 4 classification. These patients are treated differently and may be restricted in certain clinical trials. You need to discuss everything again with his physicians. Surely he can start the hormonal treatment but the intent at cure is not in jeopardy.

    Get answers.

     VGama

    Thank you for responding. He

    Thank you for responding. He has had one Lupron shot. Oncologist personally called and said it did look like something is there. He said at present still no chemo and he is now a candidate for trial of Lupron and xtandi. But he wanted to check out before anything was signed. You mentiones intent to cure not in jeopardy there is no cure right. I have read swog9308 which says one with minimal metastatic had median survival of 7 years with just hormone treatment. Did I misinterpret and what does the Xtandi help with does it add to survival? Thanks for any input I am very scared.

  • VascodaGama
    VascodaGama Member Posts: 3,557 Member
    edited October 2016 #52
    Get second opinions on the scan

    Marie

    Regarding your inquire on my comment; "You mentiones intent to cure not in jeopardy there is no cure right", it means that if your husband decides to have a radiation therapy in the future, the hormonal therapy he has started now it would not place the effectiveness of radiation into jeopardy. In other words, cure would be possible if one of the radical treatments (surgery or radiation) can be administered with success.

    From the diagnosis you shared here before, we may have ruled out surgery because the cancer is not contained, but radiation was still an option. However, radiation success depends on the location of the cancer so that the last image study results become important in the final decision. In this respect I cannot trust the results provided by his doctor (your post of today) without a second opinion.

    The Hormonal treatment with Lupron and Xtandi could be started at any time. These drugs will control the advancement/grow of the cancer, until the patient becomes refractory. The treatment is controlled via testosterone tests and the PSA. Once refractory is set in then the patient is moved into other set of drugs before starting chemotherapy. These are all palliative but allow the patient many years of life and enjoyment. Some guys with no other illnesses managed over 15 years.

    The side effects are numerous (some mild others more accentuated) but can be controlled with a change in the life style, diets and fitness programs. He needs to be vigilant with bone health, the lipids and any heart problem along the therapy.

    Best,

    VG

    Here is a link for nutrition that may be of help;

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

  • Sadie marie
    Sadie marie Member Posts: 63
    Got info on clinical trial.

    Got info on clinical trial. They are seeing if adding Xtandi to Lupron from the start helps. As VG stated earlier one group gets a placebo while other group gets Xtand. All costs are covered and you get $44 each time. We have a couple months to decide and we can talk to radiation oncologist and if possible have that done prior to starting. Is 3 spots on left hip minimal advanced. Will radiation help? How can they tell if Xtandi helps when men react differently to Lupron some is very effective others don't last long.

  • Old Salt
    Old Salt Member Posts: 984 Member
    You wrote

    How can they tell if Xtandi helps when men react differently to Lupron some is very effective others don't last long.

    Let's get this straight.

    Lupron is generally very effective in driving down testosterone levels. What differs among men are the side effects. Also, some men become refractory (the cancer cells have changed and don't need outside testosterone any more to thrive) earlier than others.

    Regarding the clinical trial:

    Whether Xtandi 'helps' will take time to figure out. That's the reason for the trial. I haven't read the protocol (you should though), but it seems likely that the group will be followed for several years.

    Did you ask whether this is a blinded trial? In other words, will your husband know whether he gets just Lupron or Lupron + Xtandi?

    Sorry, but I am not able to answer your question about the spot radiation.

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

    You wrote

    How can they tell if Xtandi helps when men react differently to Lupron some is very effective others don't last long.

    Let's get this straight.

    Lupron is generally very effective in driving down testosterone levels. What differs among men are the side effects. Also, some men become refractory (the cancer cells have changed and don't need outside testosterone any more to thrive) earlier than others.

    Regarding the clinical trial:

    Whether Xtandi 'helps' will take time to figure out. That's the reason for the trial. I haven't read the protocol (you should though), but it seems likely that the group will be followed for several years.

    Did you ask whether this is a blinded trial? In other words, will your husband know whether he gets just Lupron or Lupron + Xtandi?

    Sorry, but I am not able to answer your question about the spot radiation.

    Yes it is a blind trial. I

    Yes it is a blind trial. I guess I meant if some become resistant faster will it matter if they have Xtandi with the resistance factor

  • Old Salt
    Old Salt Member Posts: 984 Member
    edited October 2016 #56

    Yes it is a blind trial. I

    Yes it is a blind trial. I guess I meant if some become resistant faster will it matter if they have Xtandi with the resistance factor

    More about Xtandi

    Normally, Xtandi (enzalutamide) is used after Lupron (or a similar drug) has failed in patients with metastatic prostate cancer. At that point, Xtandi will still be effective since its site of attack is different (it binds to androgen receptors in the cancer cells). Unfortunately, resistance to Xtandi may develop after a certain amount of time.

    The purpose of the trial is to find out if using the two drugs together from the start will extend the time to 'double resistance'. Even if resistance to both drugs develops, there are still other methods to control the cancer. And who knows, this is a very active field of research, perhaps another therapy will become available.

    As an aside, Xtandi is VERY expensive, and getting the drug for free in a clinical trial is something to consider. Of course, it won't be known if your husband will actually get Xtandi, since you wrote that the trial is blinded. Suppose your husband gets just Lupron and if resistance develops, does the clinical trial offer some help?

    Better info:

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

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

    More about Xtandi

    Normally, Xtandi (enzalutamide) is used after Lupron (or a similar drug) has failed in patients with metastatic prostate cancer. At that point, Xtandi will still be effective since its site of attack is different (it binds to androgen receptors in the cancer cells). Unfortunately, resistance to Xtandi may develop after a certain amount of time.

    The purpose of the trial is to find out if using the two drugs together from the start will extend the time to 'double resistance'. Even if resistance to both drugs develops, there are still other methods to control the cancer. And who knows, this is a very active field of research, perhaps another therapy will become available.

    As an aside, Xtandi is VERY expensive, and getting the drug for free in a clinical trial is something to consider. Of course, it won't be known if your husband will actually get Xtandi, since you wrote that the trial is blinded. Suppose your husband gets just Lupron and if resistance develops, does the clinical trial offer some help?

    Better info:

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

    No they won't till trial is

    No they won't till trial is done. What is average length of time Lupron works? Can the 3 spots on hip possible be treated with radiation?

  • Sadie marie
    Sadie marie Member Posts: 63
    edited October 2016 #58
    Bone scan

    looking at second bone scan: Impression: increasing focus of abn tracer uptake involving the left os pubis extending into the left inferior pubic ramus, as well as a new focus along the right sacroiliac joint, likely representing progression of osseous metastatic disease. Can anyone tell how serious this is. Can radiation be used. I realize it is very serious, the whole disease is serious, but is this treatable.

  • Sadie marie
    Sadie marie Member Posts: 63
    edited October 2016 #59
    No radiation

    saw radiation oncologist today said he couldn't or won't do anything till there is actual pain and hope for the best with Lupron until it becomes refractory which could be 5-10 years which is different than urologist saying maybe 2 before it's over. Still trying to decide about Xtandi trial. Not knowing if you are really getting real meds is hard to decide plus it's with urologist not oncologist. So much to try to absorb.

     

  • Old Salt
    Old Salt Member Posts: 984 Member
    edited October 2016 #60

    If your husband will get only the Lupron in the trial, it should still drive down the cancer. At least, that's what we hope. Once he becomes resistant to it after X number of years, Xtandi will still be an option.

  • VascodaGama
    VascodaGama Member Posts: 3,557 Member
    Lupron will hold the bandit While you look for opinions

    Marie,

    I am sorry for the situation. I agree with Old Salt comments. Lupron will hold the bandit. Meanwhile you can discuss with other radiologist to get an opinion on the radiation possibility.
    Keep checking the PSA every three months and the lipids annually.

    Best wishes,

    VG