Our situation

MEJB
MEJB Member Posts: 9
in Prostate Cancer #1

Hello,

New here. My dad had been experiencing mild to moderate back pain for around 3 months. Since he hadnt been to the doctor in over 40 years, he was waiting for it to go away. Finally, the pain became so severe, he agreed to go to the urgent care. Days later he got an mri where they called an hour later urgently advising he go to the Emergency Room. Long story short, he had emeegency surgery because a tumor had fractured a vertebrate in his spine and was pressing on his nerve. 

He didn't have any other symptoms besides the back pain FYI 

Where we are at and what I know:

69 years old

Hes been diagnosed with stage four prostate cancer

His PSA is >3,300 (crazy I know)

I don't know his Gleason Score. He had a biopsy of the tumor and these were the only results I could find:

Positive - PSA

Positive - keratin

ki-67 - 10-20%

Involved by metastatic prostatic carcinoma; 

 

They did say cancer wasn't in lymph nodes 

 

Doctor recommended:

lupron shot

zytiga with pred 

xgeva shot

possible radiation 

pet ct scan scheduled for a few days from now

 

Any thoughts or experiences that might be helpful?

Comments

  • Clevelandguy
    Clevelandguy Member Posts: 1,206 Member
    #2
    Pet scan results needed

    Hi MEBJ,

    Sorry to hear about your Dad's cancer situation.  The PET scan should give you a better idea of the cancer spread, once you lnow what you are dealing with your doctors can formulate a treatment plan.  Cancer in the spine is never a good thing to hear along with stage four. When you get the full picture update the forum with the results.  Hope for the best, accept and act on the results.  Good luck........

    Dave 3-4

     

  • MEJB
    MEJB Member Posts: 9
    edited May 2021 #3
    Clevelandguy said:

    Pet scan results needed

    Hi MEBJ,

    Sorry to hear about your Dad's cancer situation.  The PET scan should give you a better idea of the cancer spread, once you lnow what you are dealing with your doctors can formulate a treatment plan.  Cancer in the spine is never a good thing to hear along with stage four. When you get the full picture update the forum with the results.  Hope for the best, accept and act on the results.  Good luck........

    Dave 3-4

     

    Hopeful

    Thank you Dave! Its definitely a challenging time. Remaining hopeful about the pet scan results and treatment plan. Someone also mentioned now that docetexal with zytiga and adt have been successful in metastatic prostate cancer. Have you heard anything?

  • Clevelandguy
    Clevelandguy Member Posts: 1,206 Member
    #4
    Drugs

    Hi,

    Docetexal is a chemotherapy drug and Zytiga is a testosterone reducing drug.  They will help your father but do have some nasty side effects.  You need to be consulting a Oncologist who specializes in Metastatic Prostate cancer as they can decide what drugs will have the least amount of side effects plus still kick the cancers butt.

    Dave 3+4

  • MEJB
    MEJB Member Posts: 9
    #5
    Metastatic prostate

    Okay. He is at Hoag/keck. We live in southern Orange County. So if anyone knows of an oncologist specializing in metast prostate cancer please share. 

    thanks again!

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    edited May 2021 #6
    .

    Like you I live in Orange County. There is a group the Prostate Forum of OC that can be very helpful to you. There is a zoom sharing meeting tomorrow 5/27 at 5PM for those with more aggressive cancer. The men at the meeting will be happy to share information about their experiences and the knowledge that they acquired. I sent you a private email with the information

     

  • MEJB
    MEJB Member Posts: 9
    #7
    hopeful and optimistic said:

    .

    Like you I live in Orange County. There is a group the Prostate Forum of OC that can be very helpful to you. There is a zoom sharing meeting tomorrow 5/27 at 5PM for those with more aggressive cancer. The men at the meeting will be happy to share information about their experiences and the knowledge that they acquired. I sent you a private email with the information

     

    Thank you!

    thank you so much! Like I mentioned, he just had the back fusion surgery and is now on zytiga. He is experiencing a lot of pain still and very lethargic. Is that everyone's experience starting zytiga? Is there anything that can help manage symptoms in anyones personal experience. Thanks again for the support. 

  • Clevelandguy
    Clevelandguy Member Posts: 1,206 Member
    #8
    Canabis?

    Hi,

    Canabis might help with your Dad's pain as Vasco suggested if regular pain meds don't work.  I have been using a CBD oil product on my shoulder for quite a while and it does help with the discomfort.  Might want to check with your doctors and see if they agree with the Canabis route.  Good luck with your Dad and keep asking questions.

    Dave 3+4

     

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    #9
    Wait for the PET results

    Hi mejb 

    I am sorry to read about your dad's situation. His case seems to be quite advanced and probably systemic. The PET scan may identify his real clinical status. Typically, similar advanced cases are directed to hormonal or chemo treatment, or to a combination of both,  but if the cancer is found in a fewer number of spots in bone then the choice in radiating these spots may be recommendable. 

    Pain due to PCa metastases in bone are common. Many doctors administer antiandrogens to aliviatate pain at bone joints. Your dad's doctor started zytiga without the use of agonists (Lupron,  etc) probably to avoid flare which can turn the pain situation nastier. 

    I do not think that Zytiga alone will do much. This drug has passed clinical trials for providing longer survival terms when administered together with a LHRH agonist but the results from trials were still lower than the more typical combination of ADT plus chemotherapy as you indicate above.

    Some survivors have posted their experience in using canabis or opioid to relieve pain but in your shoes I would try using the typical pain killers.

    Best wishes and luck in his/your journey.

    VGama

     

  • MEJB
    MEJB Member Posts: 9
    edited May 2021 #10
    VascodaGama said:

    Wait for the PET results

    Hi mejb 

    I am sorry to read about your dad's situation. His case seems to be quite advanced and probably systemic. The PET scan may identify his real clinical status. Typically, similar advanced cases are directed to hormonal or chemo treatment, or to a combination of both,  but if the cancer is found in a fewer number of spots in bone then the choice in radiating these spots may be recommendable. 

    Pain due to PCa metastases in bone are common. Many doctors administer antiandrogens to aliviatate pain at bone joints. Your dad's doctor started zytiga without the use of agonists (Lupron,  etc) probably to avoid flare which can turn the pain situation nastier. 

    I do not think that Zytiga alone will do much. This drug has passed clinical trials for providing longer survival terms when administered together with a LHRH agonist but the results from trials were still lower than the more typical combination of ADT plus chemotherapy as you indicate above.

    Some survivors have posted their experience in using canabis or opioid to relieve pain but in your shoes I would try using the typical pain killers.

    Best wishes and luck in his/your journey.

    VGama

     

    Will wait

    Vgama 

    Thank you for your insight. Seems the pet scan will provide more clarity as many of you have mentioned. They are waiting on Lupron to be approved through the insurance As I understand it. My hope would be that he take the zytiga with chemo. Is he a candidate for brachytherapy? 

  • MEJB
    MEJB Member Posts: 9
    edited May 2021 #11
    Clevelandguy said:

    Canabis?

    Hi,

    Canabis might help with your Dad's pain as Vasco suggested if regular pain meds don't work.  I have been using a CBD oil product on my shoulder for quite a while and it does help with the discomfort.  Might want to check with your doctors and see if they agree with the Canabis route.  Good luck with your Dad and keep asking questions.

    Dave 3+4

     

    Cbd

    Thank you Dave. I suggested this last night. We will bring up to doctor!

  • Josephg
    Josephg Member Posts: 460 Member
    #12
    Zytiga and Lupron Costs

    I am currently on an ADT cocktail that includes Zytiga.  All medications that reduce testosterone to near zero levels will seem to cause varying degrees of lethargy, but the real cause of lethargy is the lack of testosterone itself in the body's system, rather than the medications themselves.

    I would strongly recommend that you obtain the complete results/report on your Dad's biopsy, as it will contain a lot of needed and insightful information, including the Gleason score.  You are entitled to receive a full copy.  Knowledgeable folks here will be able to provide you with their layperson (we are not medical professionals) perspectives on the report, if you post it here.

    Regarding Lupron costs, if your Dad is on Medicare, and if the Lupron injection is administered in a hospital environment, then the cost of the Lupron injection is covered by Medicare Part B.  There is an annual deduction of less than $200 for Medicare Part B, but apart from that annual deduction, your Dad won't be charged and additional money for the Lupron injections.

    I wish your Dad the best of outcomes on his PCa journey.

  • MEJB
    MEJB Member Posts: 9
    #13
    Josephg said:

    Zytiga and Lupron Costs

    I am currently on an ADT cocktail that includes Zytiga.  All medications that reduce testosterone to near zero levels will seem to cause varying degrees of lethargy, but the real cause of lethargy is the lack of testosterone itself in the body's system, rather than the medications themselves.

    I would strongly recommend that you obtain the complete results/report on your Dad's biopsy, as it will contain a lot of needed and insightful information, including the Gleason score.  You are entitled to receive a full copy.  Knowledgeable folks here will be able to provide you with their layperson (we are not medical professionals) perspectives on the report, if you post it here.

    Regarding Lupron costs, if your Dad is on Medicare, and if the Lupron injection is administered in a hospital environment, then the cost of the Lupron injection is covered by Medicare Part B.  There is an annual deduction of less than $200 for Medicare Part B, but apart from that annual deduction, your Dad won't be charged and additional money for the Lupron injections.

    I wish your Dad the best of outcomes on his PCa journey.

    Lupron

    Thank you! Yes he's on Medicare and they are administering in hospital setting so I'm not quite sure what the hold up is. 

    the biopsy result was uploaded to the portal but it seemed so basic with not a lot of information. It stated it would be sent off for further testing and we could obtain a copy in 14 days so I will look into getting that report. Someone mentioned that if he was newly diagnosed stave 4 with bone mets they might not bother with a Gleason score? 

    were you offered brachytherap?

    Thanks for the support. Best wishes to you. 

  • MEJB
    MEJB Member Posts: 9
    edited May 2021 #14
    Clevelandguy said:

    Drugs

    Hi,

    Docetexal is a chemotherapy drug and Zytiga is a testosterone reducing drug.  They will help your father but do have some nasty side effects.  You need to be consulting a Oncologist who specializes in Metastatic Prostate cancer as they can decide what drugs will have the least amount of side effects plus still kick the cancers butt.

    Dave 3+4

    Just talked to my mom

    hi quick question I thought zytiga was a chemo drug?

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    edited May 2021 #15
    T4 diagnosis is far away from being contained

    Hi again, 

    Brachytherapy is mostly used in contained cases (T1/T2). T4 patients wouldn't benefit much from such form of radiotherapy. In any case,  before procuring a treatment you need to gather more information on the status of your dad. Please remember that radiation therapy shouldn't be planned for a repetitive attack at the same area. If the pet identifies spots at several places, probably the recommendations will be for a systemic treatment because he has been diagnosed T4 (advanced case).

    Continue your investigation. You are doing well. 

    Best vG

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