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Tough time

Hi, I'm JohnDavid

I’m a few weeks short of my one year anniversary of my diagnosis of a very aggressive incurable stage 4 prostate cancer with widespread metastasis thru my bones. My first treatment, Lupron and zytiga, looked promising, maybe lasting a year or more to stop cancer progression but it began failing after 6 months. Scans in July confirmed the cancer had spread further. I started Xtandi, a drug shown to reduce PSA and cancer growth, in mid July, but this week my PSA test showed it failed. That’s reduced my options. My oncologist thinks I’m a good candidate for a clinical trial so I’m seeing another oncologist this week to see if I qualify. Aside from that I saw my radiation oncologist (all my oncologists function as a team) this week and he’s ready when I am to give me xofigo, a shot made up of radium 223 which will kill cancer in my bones. I’d get shots for 6 months and the effects would last for some time to extend my life, but like everything else it will ultimately fail. The last option is chemo therapy. Everything is intended to extend my life and reduce pain. Last year after the initial shock I felt I had a decent shot at making it maybe 4 years. I’m not that hopeful anymore. I feel like I did last September. I see a counselor, go to support groups, and have great support from friends and family. Its getting tough. I’m having trouble expressing how I feel. The drugs and cancer fatigue me, but more and more the failures of treatment are getting hard to tolerate. I’ve had four friends die of cancer since March. I know I’ll pull myself together, but this is just tough. Just putting this in writing to others with cancer helps. I’m hoping the clinical trial is something that helps. No guarantee I won’t be in the control group with a placebo though. Like one of my sisters wrote me tonight, f—- cancer.

  • Post #1
  • Sat Sep 7, 2019
Hi, I'm Treegibson

I’m sorry to hear your story. My husband also has stage 4 prostate cancer. He has been on Zytiga for about 2.5 years but it has also stopped working. Now is starting radiation and will start a clinical next month. F-cancer is right. I’ll be praying for you. Hang in there, they are discovering new things every day – I believe there will be a cure.

  • Post #2
  • Sun Sep 8, 2019
Hi, I'm JohnDavid

Treegibson, thanks. Today’s been better. I hope your husband’s clinical trial goes well, and thanks for your prayers. I’ll do the same for you and your husband. Watch out for his radiation. I finish 10 on Tuesday. I’m so physically drained. In bed 10 hours of so so sleep. As far as a cure, they’ve come so far. Need a treatment that doesn’t fail. They’ll find it. Take care. John David

  • Post #3
  • Sun Sep 8, 2019
Hi, I'm Mark H.

I am a wife of a man who 14 yrs ago had (make a log story short) what turned out to be stage 4 Lyphoma on the head of the pancreas, chemo six months and my husband lasted 12 years until he also was diagnosed with stage 4 prostate cancer that had already moved to the spine, been a long 2 years with chemo, shots, severe fatigue; however, his tests are good so far. I will pray for all of you, I feel your pain as this has been hard and I know will continue to be a fight, but so far has been worth every second I have had with him. Sometimes I struggle with watching him struggle…..sometimes it is like he is not even himself, but he always returns …… hang in is what I tell myself.
I say if you are questioning, please get a second opinion, my husband was sent home for his final days the first time around (the dr did not do a biopsy) we got ONE more opinion; that dr. did a biopsy and saved his life. Very grateful to Dr. Siemens (who sadly also retired).

  • Post #4
  • Mon Sep 9, 2019
Hi, I'm Sharon

61 stage 4 breast to bone cancer. Diagnosed June 2018. No symptoms except small scar left breast started sinking in. Long story short stage 4 breast to bone. Started on Ibrance July 2018and it worked for 10 months only and stopped. Cancer spreading again. Started on Piqray and faslodex injections.Glucose elevated. Anyone else on Piqray or faslodex? I’m ready to try anything. Losing hope. Anyone out with any advice would be appreciated.

  • Post #5
  • Wed Sep 11, 2019
Hi, I'm Forestfox

I’m on Ibrance and Faslodex since March for bone mets from breast cancer. I don’t have any side effects that are horrible. I’m sure it’s devastating when a treatment fails. Are you dealing with a lot of pain?

  • Post #6
  • Fri Sep 13, 2019
Hi, I'm DEAN C L.

Good morning, I was diagnosed with stage 4 prostate cancer that paralyzed me from the waist down in January of 2017….After 2 spinal surgeries at Wake Forest medical, a month of rehabilitation to learn how to Walk again, I am a success story ♥️ 10 radiation treatments, no chemotherapy

  • Post #7
  • Sat Sep 14, 2019
God first for me.

John, I was diagnosed with prostate cancer with mets end of 2014. Had all the traditional meds, lupron, etc. had orchiectomy in early 2015. That got testosterone under control.

Since I’ve had Provenge, And Xofigo. I believe they had a profound affect. Experienced leg swelling with Xofigo half way through. Hated that. Provenge is Immunotherapy.

I used Zytiga for almost 2 years. Hated the prednisone and gained weight. Ruined my Thyroid. It did drop psa from 800+ to under 2.0. Praise God.

Started sliding upwards again. Now on Xtandi. PSA at 25…but all scans show I am stable. First time that word “stable” has been used.

No idea why psa very slowly creeps up, Dr. not concerned. I am very healthy and active at 62. I’ll take “stable” all day long.

I urge you to look hard at Xofigo and Provenge. I am convinced they were profound in my case.

Best of luck.
I can chat anytime

Jim

  • Post #8
  • Sat Sep 14, 2019
God first for me.

By the way…on my Thyroid, got meds dialed in and weight literally fell off me…40+ lbs and counting.
Great d to s good Brother. Peace.

Jim

  • Post #9
  • Sat Sep 14, 2019
Hi, I'm JohnDavid

Everyone, Xofigo is going to be my next treatment. The radiation oncologist started insurance approval process last week. I did see the other oncologist about clinical trials but I’m not a candidate for them. Perhaps later. I appreciate the information, prayers and encouraging words. Poster 5 Sharon, don’t lose hope. Keep asking questions. Look at posters 7 and 8 (Jim). It’s hard but keep trying. Jim, thanks very much. I’m ready to start Xofigo as soon as it’s approved. I’ll look into Provenge. The oncologist had blood drawn for genetic factors that might qualify for new treatments or trials. Good luck to all of you and keep the courage. You don’t know how much I appreciate hearing from you. Thanks so much!

  • Post #10
  • Sun Sep 15, 2019

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