mgm48's Journey with Prostate Cancer

Patient: Prostate Cancer

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: over 12 years ago, Male, Age: 68, Stage Recurrent, Progressing despite hormone therapy: Yes

  1. 1
    • mgm48
    • Experience with Prostate Cancer
    over 5 years ago
    mgm48's Avatar

    Diagnosed

    Oh No

    2/2005 it really stinks that I got what killed dad

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  2. 2
    • mgm48
    • Experience with Prostate Cancer
    over 5 years ago
    mgm48's Avatar

    Radical retropubic prostatectomy

    Procedure or Surgery

    Only 19 hours in the Hospital and back to work in 6 days - I' say things went well

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Strongly Agree
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  3. 3
    • mgm48
    • Experience with Prostate Cancer
    over 5 years ago
    mgm48's Avatar

    Cancer has spread/Metastasized

    Oh No

    8/2011 - had a very minor stroke - scans discovered bone lesions - cancer's back - 6 years and it's back shucks

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  4. 4
    • mgm48
    • Experience with Prostate Cancer
    over 5 years ago
    mgm48's Avatar

    Hormone therapy

    Drug or Chemo Therapy

    the shots and pills are easy to do - kind of feel funny going to treatment room where most spend hours and leaving after minutes

    Easy to Do: Strongly Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Agree
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  5. 5
    • mgm48
    • Experience with Prostate Cancer
    over 5 years ago
    mgm48's Avatar

    Decision Point

    Not sure if the hormone block is working - scans were mixed some better most worse - PSA much better - we are adding back the Casodex but now it's wait til March for the next scans unless the biopsy next week shows something --- what's next (pun intended)

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  6. 6
    • mgm48
    • Experience with Prostate Cancer
    over 5 years ago
    mgm48's Avatar

    Cancer has spread/Metastasized

    Oh No

    Latest PSA went up and testosterone levels are very low while cancer continues to grow. The What's next has me concerned - I can't afford to stop working - I provide the insurance for both me and my wife and I have enough debt to bankrupt a couple small countries. Looking forward to Tuesday's biopsy with anxiety and can't really talk to my wife. 1. don't want to get her upset and 2. she'd say what I usually say it's just another test. And she'd be right but I can't help being anxious

    1 Comment
  7. 7
    • mgm48
    • Experience with Prostate Cancer
    over 5 years ago
    mgm48's Avatar

    CT guided bone biopsy

    Procedure or Surgery

    The scheduling and prep folks at the hospital had me thinking this was going to be quite the procedure. Turned out that in typical ME fashion we did it without general anesthesia and I went home at 10AM. Minimal pain or discomfort. Now the wait for what we already know.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  8. 8
    • mgm48
    • Experience with Prostate Cancer
    over 5 years ago
    mgm48's Avatar

    Negative Biopsy results

    Celebration

    Woopie the NEW scan wasn't cancer - biopsy negative - maybe the hormones are working!

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  9. 9
    • mgm48
    • Experience with Prostate Cancer
    over 5 years ago
    mgm48's Avatar

    Cancer has spread/Metastasized

    Oh No

    Doctors all agree I'm now Castrate resistant. PSA is increasing in spite of the Hormone Therapy - switching oncologists

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  10. 10
    • mgm48
    • Experience with Prostate Cancer
    about 5 years ago
    mgm48's Avatar

    Phase 1

    Clinical Trial

    Will start 5/10/2012 at U of Chicago. Trial is docetaxel and pazopanib combo - I'm in phase 1. Will keep all updated. WOOPS! Not in the trail, got kicked out because of the stroke (was within 1 year of the start of the trial)

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  11. 11
    • mgm48
    • Experience with Prostate Cancer
    about 5 years ago
    mgm48's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Day of was smooth as glass. No day of side effects and Susan was so nice. They give the Docetaxel a little slower the first time. I can't believe the saints they call oncology nurses. My blood pressure has been unusually high - can you say apprehensive about the unknown? I'm waiting to see which side effects show up, I've been assured that there will be some. The steroids have me a nagging head ache but think a night's sleep will make that go away.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Not Specified
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  12. 12
    • mgm48
    • Experience with Prostate Cancer
    almost 5 years ago
    mgm48's Avatar

    LImited side effects - notes

    Side Effects

    I have had limited side effects - a 12 pound weight gain (6.7%) due to the steroids, I think. Some vein scars, so they put in a port. Fatigue in noticeable but minor on days 5,6 & 7, I'm able to work through the tiredness, just not 100% productive. I also seem to overeat when fatigued. And I tend to be a bit more moody when fatigued.

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  13. 13
    • mgm48
    • Experience with Prostate Cancer
    over 4 years ago
    mgm48's Avatar

    Chemo HOLIDAY

    Other Care

    Well we start the toughest part of this journey for me - the wait and see part. I have less anxiety when we are "doing something" than when we're watching. Pretty much know PSA will start to rise and I know I won't like it.... But based on the scans I'm not convinced that it really is all that precise. Hope we get several months out of this Holiday.

    1 Comment
  14. 14
    • mgm48
    • Experience with Prostate Cancer
    over 4 years ago
    mgm48's Avatar

    Cabozantinib or XL184 drug trial Phase II

    Clinical Trial

    This trial is a phase II study of MRI based functional imaging for the evaluation of bone metastasis in men with castrate resistant prostate cancer receiving XL184 (Cabozantinib). Being run by University of Chicago (how convenient) So far the screening of being on an MRI table for 90 minutes was the toughest part of this. Will post any side effects 12/13/12 Update - two weeks and had a very long day of scans and blood work. Got the results of the bone scan "Significantly lower intensity and no new lesions". Pain is gone. Side effects limited to hoarse voice, elevated liver enzymes, slight increase in fatigue (manageable) and sore back muscles (it only hurts when I do this...then don't do that). 12/27/12 Liver enzymes got better (not a lot but better is good), getting over a horrible cold which wiped me out like no cold ever, fatigue is high (think it's the cold), back is the same muscle soreness. BOY! significant was an understatement, the bone scan was almost dim in comparison to November. Got the OK to continue another 4 weeks - it would seem I have a few less side effects than most. Doctor was so excited about the 2 week bone scan, he sent it all around the department.

    1 Comment
  15. 15
    • mgm48
    • Experience with Prostate Cancer
    over 4 years ago
    mgm48's Avatar

    Hand foot syndrome

    Side Effects

    I really hadn't heard about this one but they even had a brochure on it. Mine is classified as grade 3 even though I don't have any extreme redness or cracking. Mine are painful enough that I have trouble walking. The recommended lotions really don't release the pain but Vicodin does make things more tolerable. Good news is that when the condition resolves I will go back on the Cabozantinib at a reduced dose. That's good because I've only been off the Cabo for 3 days and the leg pain seemed to be returning. Kinda stinks because I can't do some of the exercises I was doing to deal with the leg pain. The brochure also says no aerobic exercise. That's particularly stinky because that has been a large part of how I personally dealt with my cancer. My feet are getting better but have a way to go, darn!!! This is one weird side effect that I certainly could have done without. Both of my kids (35 and 38 years old) came to help out and I really appreciate it. This is the first thing that has actually impacted my daily life significantly. Keep it positive and smile :)

    1 Comment
  16. 16
    • mgm48
    • Experience with Prostate Cancer
    over 4 years ago
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    Hand foot syndrome

    Side Effects

    Doctors seem to know that the class of drug that Cabozantinib is part of is prone to the hand foot syndrome. Good news, it goes away just about as quickly as it comes. Bad news, I could not walk or even put on a sock - got around on knees wish we had a more plush carpet and pad on the floors - hardwood hurts.

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  17. 17
    • mgm48
    • Experience with Prostate Cancer
    over 3 years ago
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    Tasquinimod with Cabazitaxel (CATCH)

    Clinical Trial

    I've done a number of trials now but this is the second "investigational" drug I've tried. So far, a bit over 3 weeks in, things are going well.

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