Advanced Prostate Cancer
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Husband is Stage IV Metastatic to Bones with Rising PSA

My husband was diagnosed in February with Advance Prostate Cancer metastatic to the intrapelvic lymph nodes. Biopsy showed 12 out of 12 cores Gleason 10. PSA was 31.8 on 1/29 after 13.1 on 12/8. He was put on one month of Casodex and received his first Lupron shot on 3/10 and started RT on 3/22. We were told surgery was out because it had spread so much. We met with oncologist who set up chemo for after radiation. Dan breezed through radiation with no side effects and had no side effects at all from the Lupron either. Here's where the story gets confusing. During last 2 weeks of RT, he had to be replanned because his prostate had shrunken so much things had shifted. Great! Doctor even said the word remission. On scan reports after RT it mentioned progression of previously noted bone mets (WHAT?) plus several new ones. At no point was this ever mentioned, and was not referred to in his diagnosis. PSA on 5/25 was 3.6 and 6/6 7.4. Already doubling! T was <12. Met with Med. Onc. who was very grim, but will not think outside the box. Dan had his first chemo yesterday and we are going to Vanderbilt on Monday to get a second opinion. Any advice or treatments I should ask about at Vandy? I'm really unhappy with our situation at the Pratt Cancer Center in St. Louis. At the moment he's feeling no effects of anything, but every ache makes him think the cancer is spreading. This is the first forum I've found with many Gleason 10 guys and it's very encouraging. Thanks in advance for your thoughts. Mary

Spouse DX 2/16

age 58

PSA 8/14 1.4

PSA 12/15 13.1

PSA 1/16 31.8

2/11/16 Biopsy 12/12 Gleason 10

2/23/16 CT & MRI Pelvic Nodes Enlarged

2/29/16 Casodex

3/10/16 Lupron

3/22 - 5/20/16 43 IMRT sessions

3/24/16 Meet with Medical Onc.

5/25/16 PSA 3.6

5/31/16 CT/MRI bone mets

6/6/16 PSA 7.4

6/8/16 Taxotere PSA 9

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I found out after 8 years with a somewhat controlee psa of 5 or less and gleason of 9 that my psa jumped to over 2000 in three weeks and liver emzymes to over 2400. Doctor started me on texderm and psa drop to 800 after first dose. Now at 6 after 3 doses. Sorry was for in march 2016. The cancer had spread to loungs and bones including spine and all bones below the waist. So guys there is hope for a good recovery. Get a good support group and stay positive. OH by the way I am always tired and have had some major paid and blistered feet. Small price to pay for a possible normal life. Looking ahead to years of life instead on average of one. I wish you all well. My age 64.

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An amazing explosion of your PSA number - from 5 to 3000 in a month. Are you sure? Did anyone comment on that, or try to explain what its cause was?

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Hello. I was diagnosed in January 2014 with a Gleason 9. I was 51 yrs old. I had one positive lymph node. I had surgery in Orlando with Dr. Patel. However, my PSA did not lower very much at all. I went to every major cancer center and decided to treat with Dr. Drake at Johns Hopkins. I had radiation and provenge. All paid by insurance. I had two years of hormone therapy (Trelstar). I discontinued that in April. My PSA is now undetectable. Keeping fingers crossed and praying. Dr. Drake was given close to $200 million grant recently for his immunotherapy research. He is an out of the box thinker. There are several clinical trials going on m associated with immunotherapy at JH. I believe 100% I woukd have never achieved this result anywhere else. If you're looking at places to treat, its worth an appointment at Johns Hopkins to see what they might have available for your husband. God bless.

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Dr. Drake recently left Johns Hopkins for New York City.

cancer.columbia.edu/charles...

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I was diagnosed in August 2012 with PSA of 29, Gleason 9/10 in all cores. Surgery not an option. Under care of Dr. Charles "Snuffy" Myers. After Feraheme MRI, confirmed numerous mets in pelvic and abdominal lymph nodes. Radiation not an option. Have been on androgen deprivation therapy. Currently take 10 prescription drugs. At various times, have had Lupron, Firmagon, Casodex, Avodart, Zytiga, Metformin, Leukine, Xtandi, etc. Lowest PSA was .041, now rising slowly to 1.070.

Myers is a strong believer in hitting aggressive cancer from all sides at once, with multiple drugs. Ask Vanderbilt about a similar approach. To find out what is going on, Mayo uses C-11 Cholene PET/CT and Phoenix Molecular Imaging uses C-11 Acetate PET/CT.

I am going to Phoenix when my PSA rises to 1.5-2.0 (it hurts me to say that I actually am looking for a PSA increase, but that level insures a more accurate scan result)!

Bottom line, buy time with aggressive treatment to aggressive cancer. New drugs (checkpoint inhibitors) are coming which may save us. Stay strong and never give in.

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I've been at Vandy for at least 18 mos. Great experience with Dr. Shinahara. You are welcome to call me.

Bob Chanin

615-879-2935

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Mary,

You are on the right track at this moment. Chemotherapy and a second opinion are your current best course.

However, if it were me, given the very aggressive nature of his disease, at this time I would personally also get a third opinion. Insurance will probably cover the cost and I am a firm believer that more heads (all who have had different experiences) will always come up with a better plan. If you go this route you will have to be the person to merge the thinking and develop the plan.

I have 5 different cancers, including advanced prostate cancer and when I was diagnosed with a rare cancer I followed this path and actually had 5 consults before I decided on a treatment path. All 5 of the recommendations were different and I ended up carving out my own personal conglomeration of what I learned. You will need to do the same.

As I know you are aware that his disease is very aggressive and as you have been doing, you need to answer it in a similar fashion.

When you go to Vanderbilt and if you decide to have additional consults I would ask specifically about the possibility of a clinical trial, maybe one using a PARP Inhibitor. These inhibitor are the most recent newer investigational drugs and have in other cancers had an impact. It is totally experimental, but worthy of consideration.

Joel

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Following are a few papers for your review, consideration, and discussion with your treating physician. With advanced, high grade, and particularly known metastasis at diagnosis, a more aggressive treatment protocol is important early-on. In the following you will find some repetition in consideration, but each paper is intended to provide the patient aggressive treatment considerations.

ADT + CHEMOTHERAPY FOR PATIENTS INITIALLY DIAGNOSED WITH ADVANCED PROSTATE CANCER INCLUDING METASTATES ALREADY PRESENT:

tinyurl.com/hkntph2

ADVANCED PC AT TIME OF DIAGNOSIS* tinyurl.com/3s76t6x

ANDROGEN DEPRIVATION THERAPY – HOPEFULLY EXPLAINED IN A MANNER THAT CAN BE UNDERSTOOD BY PATIENTS AND/OR THEIR CAREGIVERS tinyurl.com/zn9rtl6

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I was impressed with Dr. Luke Nordquist at the PCRI conference a couple weeks ago. He's in Omaha.

omaha.com/livewellnebraska/...

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PCRI 2017 pcri.org/2017-conference/#s...

I forgot what he said. What impressed you?

I see that Dr Nordquist is one of the largest enrollers of patients in Provenge.

Provenge is not an antibody (as is CimaVax) and it is not an activated antigen presenting cell (like CAR-T). What (the heck) is it? They do say " the data is the data", meaning we have no idea how it works, but it seems to. $100,000 is a lot to pay for "seems to". I have had it, in both senses.

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Update: After failing Taxotere, Jevtana, Etoposide/Carboplatin, Zytiga and Xtandi, Dan passed away July 12. His Gleason 10 was just too aggressive. In August 2016 scans showed a spot on his liver. They tried to biopsy at Mayo, but were unable to get a sample. We were told to wait and see if it responded to Jevtana to determine if it was PC. When scans were done after treatment with Jevtana, bone mets had responded, but liver had extensive mets. Recommended treatment was Etoposide/Carboplatin which worked to lower PSA for 3-4 treatments, but PSA again began to rise and mets in liver were now innumerable. Treatment was stopped at the end of May to allow recovery from treatment. By the end of June Dan was have a lot of shoulder pain which was caused by the liver mets, and we saw a palliative care dr. that suggested hospice and lots of pain medication. She said his liver had doubled in size. He passed away five days later. Looking back there are things I'd have done differently, but I don't know that they would have affected the outcome. We had consultations with Siteman Cancer Center in St. Louis, Vanderbilt, Mayo, and MDAnderson. None of them recommended anything other that standard of care. We were blessed to have the time we had, we were just hoping for much more. Mary

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Our thoughts are with you and Dan. We are so sad for your unimaginable loss. My nephew just forwarded to us a moving love letter from Nobel-winning physicist, Richard Feynman to his departed wife which can be found on Brain Pickings by Maria Popova. I hope it will substitute for a proper sympathy card.

Love and prayers, Jan and Les (GS 7 + 9, April 2016)

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So sorry for your loss. You two fought it as hard as you could. Please do not focus on what you could of done differently. You did the best you can. All of us have to make decisions with the knowledge we know today. Please know you did everything you could for Dan. You were his warrior and champion. More important, you gave him the love to continue to fight.

God bless you. God bless all caregivers.

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Dearest Mary,

I hurt so badly for you right now. It has been right at 2 years this month that I lost my husband, Ray, after his 5+ year battle of mCRPC. Each person experiences the grief which accompanies the loss of a spouse differently, so I can not say, "I know how you feel." Yet, there is a common thread among us who have cared for a spouse, then see their demise and death. I am deeply sorry for Dan's passing. I'm sure you did everything possible to make his life comfortable for as long as you could. Your good deeds will not go unnoticed. There is a website/blog that I came across about a year ago, and it has been my lifeline. It's called Griefnet.com. I would highly recommend that you look at it to see if it might meet your needs. The facilitator can explain all about it. I will remember you, Mary, in my thoughts and prayers that you will savor sweet memories of your life with Dan. Blessings to you.

Susan

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So sorry for your loss. You and Dan have my prayers.

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I’m so sorry to read of your loss. My thoughts are with you.

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Oh Mary.....I am so deeply sorry for your heartbreak, your pain and your loss of your Dan. Words are just not enough.

If needed.... you may find some comfort from a wonderful group of ladies from LadiesProstateForum.com

They are such wonderful ladies.

Sending you hugs and prayers Mary. Please take care of you.

Most sincere,

Jackie

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The radiation was to the cancer in his prostate and it appears to have worked there as the prostate has shrunk. The cancer that spread to the rest of his body hopefully will be controlled with the Lupron and the Chemo. The Chemo does not work instantaneously. My PSA actually rose after the first infusion only to fall by the third infusion. I am on two Chemo drugs Taxotere and Carboplatin along with prednisone pills. After 15 infusions my PSA has gone down significantly. Best wishes. Kill the beast.

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