8.5 Years Post Initial Treatment (G9, 3tb, PSA 34) - Keeping Up the Fight

DougS
DougS Member Posts: 21
in Prostate Cancer #1

         Just received latest PSA blood test from Friday (8/15/2016) and I have never seen such a low result across my name - 0.016!  It's not been a roller coaster ride for me - more like a slow constant rise after significant drops!

          Initial treatment included IMRT and three years of Luprone shots.  I blew up in weight adding 45 pounds along with all the other side effects.  I'm not sure how much significance the University doctors gave to my cholesterol, LDL, HDL, etc. during this period.

         April, 2011 was my last Luprone shot reaching the lowest PSA at 0.21.  The cancer immediately recurred but slowly rising to a high of 9.5 (Oct 2013).  Doctor put me on Casodex maintaining the PSA at around 9.5 until salvage cryosurgery was performed by Dr Silverman (March 2014).  The lowest the PSA reached after cryo treatment was 0.5 after which another slow buildup to 6.2 (April, 2016). 

         Latest treatment included a combination Firmagon, Xtandi, and proton beam radiation treatment to the prostate gland and seminal vesicles.  Not even a month post PB radiation treatment and the low number is very gratifying - hoping this is a long stay!

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    edited August 2016 #2
    Congratulations

    This is a great report. Surely the combi treatment is behind the lower PSA but you cannot tell if PB (proton beam RT) has eradicated the bandit (lowering the PSA) or if the result is masked by Firmagon. What is the protocol in regards to the adjuvant period?

    Proton is typically used in contained cases (the whole cancer inside the gland). I wonder if the decision on the treatment was based on a proper image study. Have you tried to locate the bandit's hideaways in a PET exam?

     Best wishes for a long stay in remission.

    VG

  • DougS
    DougS Member Posts: 21
    #3
    VascodaGama said:

    Congratulations

    This is a great report. Surely the combi treatment is behind the lower PSA but you cannot tell if PB (proton beam RT) has eradicated the bandit (lowering the PSA) or if the result is masked by Firmagon. What is the protocol in regards to the adjuvant period?

    Proton is typically used in contained cases (the whole cancer inside the gland). I wonder if the decision on the treatment was based on a proper image study. Have you tried to locate the bandit's hideaways in a PET exam?

     Best wishes for a long stay in remission.

    VG

    Protocol

    Thanks Vasco.  

    I had a 3T MRI along with a C-11 acetate PET performed by Dr. Almeida.  Based upon these scans,  we originally applied for laser ablation with Dr  Walsner.  We were denied due to high risks which left PB treatment.  Although the PB treatment was denied by our BCBS insurance, my company went ahead and paid for this treatment.

    This prognosis is a lot better than what the University doctors told us 8.5 years ago.  We were told not to expect 10 years.  

     

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    edited August 2016 #4
    Those doctors are crazy

    Nobody can assure life times or shorten them. Your positive attitude confronting the problem has been very healthy, so far. From what I have read about Dr. Almeida and his researches on C11 acetate I would trust his recommendations. Proton has the benefit of radiating a target with lesser collateral damage to tissues beyond the target, even if one considers the reflected radiation effects. Bragg's peak is its particulars.

    Best wishes for a lower PSA and continued efforts to knock down the bandit while keeping quality living.

    Regards,

    VG

  • DougS
    DougS Member Posts: 21
    edited August 2016 #5
    VascodaGama said:

    Those doctors are crazy

    Nobody can assure life times or shorten them. Your positive attitude confronting the problem has been very healthy, so far. From what I have read about Dr. Almeida and his researches on C11 acetate I would trust his recommendations. Proton has the benefit of radiating a target with lesser collateral damage to tissues beyond the target, even if one considers the reflected radiation effects. Bragg's peak is its particulars.

    Best wishes for a lower PSA and continued efforts to knock down the bandit while keeping quality living.

    Regards,

    VG

    Thanks Vasco

    I wanted to thank to specifically Vasco - you led me to meet with Dr Myers and have been a patient of his since 2013.  It just helps knowing you have a patient advocate on your team.

  • Bill91101
    Bill91101 Member Posts: 81 Member
    #6
     

     

    Glad to hear the good news, Doug!

     

     

     

    Sounds like our cases are ‘somewhat’ parallel. I was diagnosed in April 2009 – PSA = 89, Gleason = 3+4, Doc said it looked to be late stage 3.

     

     

     

    I had IMRT and Degarelix for 6 months, then Vantas for two years. PSA dropped down to around 0.2 and stayed there until last October (0.9). A month ago my PSA tested at 2.3.

     

     

     

    Started Casodex two weeks ago and getting my first Zoladex injection tomorrow. Also hearing recent CT and ultrasound scan results tomorrow. (Ultrasound was on testicles for a hydrocele).

     

     

     

    Fingers crossed.

     

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #7
    Bill; Fingers crossed

    Bill

    The newer protocol with Zoladex is similar to the previous with Vantas. These drugs have the same purposes and do the same job in reducing the testosterone in circulation. I would recommend you to get a testosterone test done before the Zoladex shot. It will help in verifying future refractory to LHRH agonists.
     They added Casodex probably to avoid “flare” during the initial two weeks effect of the agonist. It doesn’t surprise me because the cancer could have metastasized to the bones.

    I do not know details of your case in 2009 but your reference of being diagnosed with a late stage 3 implies that there were probabilities of existing extra capsular extensions, so that IMRT became the best option. This time, the quick rise of the PSA is worrisome. You should try to locate the metastasis so that you may verify if an attack with SRT, instead of a palliative, could free you from the bandit.
     You may pursue one of the newer methods to track down the hideaways of the cancer as done by Dougs above. There are also several trials for image exams using the latest techniques and substances (contrast agents) that have proved to be reliable in identifying PCa.

    Sincerely, I do not think that the CT results will be of help to your case. Maybe a bone scan would provide added information.

    Survivors in this forum have written several posts in this forum in regards to those image studies. Just try to find that information in past threads.

    Best wishes for success with the hormonal treatment.

    VG

     

  • Will Doran
    Will Doran Member Posts: 207 Member
    #8
    Great News

    Doug,

    Congratulations on your latest test result and remission.  That's wonderful news.

    I was diagnosed a PSA 69 Gleason 7 three years ago, Had surgery in Dec 2013 followed by two years of Lupron plus 8 weeks of radiation. I was a  Stage pT3bN1.  I have been "in Remission for three years now with a PSA of <0.010.  So, I understand your Joy, as do all others here.  I have full blood work to be done next week and a check up with my doctors the following week.  I've been off Lupron for 6 months and my PSA was holding at "0" 4 months ago.  Hoping for the best. 

    Stay positive and fight like crazy.

    Enjoy every day as the "Gift From God" it is.

    Best Wishes

    Peace and God Bless

    Will

  • Bill91101
    Bill91101 Member Posts: 81 Member
    #9
    VascodaGama said:

    Bill; Fingers crossed

    Bill

    The newer protocol with Zoladex is similar to the previous with Vantas. These drugs have the same purposes and do the same job in reducing the testosterone in circulation. I would recommend you to get a testosterone test done before the Zoladex shot. It will help in verifying future refractory to LHRH agonists.
     They added Casodex probably to avoid “flare” during the initial two weeks effect of the agonist. It doesn’t surprise me because the cancer could have metastasized to the bones.

    I do not know details of your case in 2009 but your reference of being diagnosed with a late stage 3 implies that there were probabilities of existing extra capsular extensions, so that IMRT became the best option. This time, the quick rise of the PSA is worrisome. You should try to locate the metastasis so that you may verify if an attack with SRT, instead of a palliative, could free you from the bandit.
     You may pursue one of the newer methods to track down the hideaways of the cancer as done by Dougs above. There are also several trials for image exams using the latest techniques and substances (contrast agents) that have proved to be reliable in identifying PCa.

    Sincerely, I do not think that the CT results will be of help to your case. Maybe a bone scan would provide added information.

    Survivors in this forum have written several posts in this forum in regards to those image studies. Just try to find that information in past threads.

    Best wishes for success with the hormonal treatment.

    VG

     

    VG,

    VG,

    Thanks for the info!

    Got my first Zoladex injection today. Continuing with the Casodex until the 30 day supply runs out.

    Just got back from Urologist appt for the Zoladex, cystoscopy and review of CT scan and ultrasound.

    Cystoscopy: doctor found no issues. Commented that he could find no scarring from the IMRT treatments I had done some time ago. He took a look because of the occult blood that was found in a urine test I had July 11. (July 18 urine test and today’s test indicated no blood). Still a mystery why the hematuria shows up from time to time.

    CT Scan: no issues with lymph nodes indicated; but a small cyst on my liver was found. Both Urologist and doctor that reviewed the CT Scan don’t think it is malignant, but I am going in for an MRI to be sure. MRI to be in about a week. I’m not worried about it. But it does little good to worry, anyway.

    Ultrasound: no issues other than the hydrocele that has been a minor issue.

    I will be seeing the radiation oncologist in early October.

    Whew...

    thank care,

    Bill

     

  • bob33462
    bob33462 Member Posts: 76
    edited September 2016 #10
    Great News

    DougS-

    Congrats - Keep it going !!

    Bob

  • Rakendra
    Rakendra Member Posts: 197 Member
    edited September 2016 #11
    in remission

    I wonder what in remission means as well as under control.  I am under control, but have not had any tests other than PSA.  I know my prostate has reduced its size by 60%.  I am happy for Doug and any others who are improving.  It seems there are more tests to find out how much trouble one is in, and fewer tests to determine improvement.  I do not think I will have another biopsy or MIR.  I guess we need to celebrate any improvement and not worry about How Much.

    love, Swami Rakendra

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    edited September 2016 #12

    Rakendra,

    I use the term “remission” when I believe that the PCa is in subsidence and there is no appearance or a feel of apparent manifestation (symptoms). Remission could be the result of applied efforts to pin down the cancer and have it “under control”. Both terms represent the status of the disease. Remission is passive  but under-control dependents on continuous "actions" by the patient.

    I would say that my systemic case is at present under control but I am not in remission. The PSA serves me to evaluate this status. It shows if I am loosing the grip on the bandit’s neck or if he is taking the upper hand on my control. I am asymptomatic so that this test is the only possibility I have to verify such status.

    Improvements on the disease would be a status of remission forever, such as a histology of constant stable PSAs. We can also sense a feel of improvements when related symptoms subside. I wonder why you commenting about having a biopsy again. What is the idea? Are you starting a new treatment?
     Is your doctor requested an MRI just to verify the extent of the disease.

    I Hope you are OK and preparing you physic for this year’s Mr. Davao contest.

    Best wishes.

    VG

     

  • Markchat
    Markchat Member Posts: 1
    #13
    I'm new to the forum.

    I'm new to the forum. Found this thread helpful. My stage 4 dx was December 2012. Firmagon started and then Zometa. Added Xtandi April 2016. PSA holding at 0.3 as of October 2016. Loosing body hair and drowsy. On low carb diet of about 20 grams a day to lose weight. Still golfing, going to exercise class and riding a motorcycle. Feeling blessed at age 71.

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    edited October 2016 #14
    Blessed indeed

    Mark,

    Welcome to the board. It seems that your Stage 4 is under control. Golf is great to counter the side effects from the hormonal drugs. I wonder if you have the prostate gland still in place. If so, please note that riding a motorcycle before drawing blood for the test may incease the PSA.

    Best wishes for continued low levels of PSA.

    VG  

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #15
    Markchat said:

    I'm new to the forum.

    I'm new to the forum. Found this thread helpful. My stage 4 dx was December 2012. Firmagon started and then Zometa. Added Xtandi April 2016. PSA holding at 0.3 as of October 2016. Loosing body hair and drowsy. On low carb diet of about 20 grams a day to lose weight. Still golfing, going to exercise class and riding a motorcycle. Feeling blessed at age 71.

    Super

    Wonderful story, an inspiration to the numerous new Stage 4 guys we have writing now.

    max

  • shipjim
    shipjim Member Posts: 137 Member
    #16
    POST OP

    I'm more than 10 years out now.  Nothingbut the robotic surgery.  Mild leaking and ED (with snesations) psa .01 constant for 10 years.   I'm in great health and better still on the green side of the grass.  Congrats on your resuts.jj

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #17
    shipjim said:

    POST OP

    I'm more than 10 years out now.  Nothingbut the robotic surgery.  Mild leaking and ED (with snesations) psa .01 constant for 10 years.   I'm in great health and better still on the green side of the grass.  Congrats on your resuts.jj

    Super

    shipjim,

    I'm glad you're posting again and doing so well after these ten years: a view into really long-term follow up. Does your name refer to Navy service ? I was a submariner for a long time.

    max

  • Old Salt
    Old Salt Member Posts: 1,505 Member
    #18
    That's great, shipjim

    We appreciate hearing from patients treated long ago, especially when the news is good.

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