My hubby's story

Hi, my partner was diagnosed back in March with a PSA of 100. Subsequent bone scans revealed widespread mets in his lower spine and pelvis. After some waiting, he was prescribed an initial injection of ADT with Firmagon to be followed up with Lucrin in a months time. He is currently having 5 days of radiation therapy which we hope will decrease the pain - he is so tired of taking pain killers! I'm wondering if he will be given chemo as a follow up. He has had PET PSMA scan which the radiation oncologist wasn't too interested in. We remain positive after receiving some gloomy predictions from our GP at the outset. He is generally a strong and healthy 60 year old. Our youngest is only 15, so he has much yet to experience!

I feel there is a great general sense of positivity on this site - I think that goes a long way!

10 Replies

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  • So sorry that the two of you are here. Please know that there is hope. What was his PSA after he started treatment? I am surprised that the doctor was not interested in the PET scan (I have been fighting with insurance to cover a PET scan for me). Hopefully his PSA went down. In addition to bone mets, did he have any migration to the lymph nodes or organs?

    Recent studies have shown better long term results combining chemo with hormonal. It may be something to discuss. You may also may want to research the use of radium 223. Not only does it decrease bone pain but it can extend life. One of many articles on it is listed below:

    cancernetwork.com/oncology-...

    Please know that you are not alone. Everyone here is on your side and wishing the two of you the best.

  • Hi John - thanks for your advice. His PSA hasn't yet been remeasured. I think there is some lymph node and bladder neck involvement so i'm guessing that chemo will be on the horizon for him. I'm encouraged by all the advice and the fact that there is so much on offer - thanks again and all the best

  • Sorry you have to be here, but glad you found this group. There are lots of us in pretty much the same boat. I'm 59 and had a worse diagnosis almost 3 months ago. My PSA was 400, extensive mets and so much pain I could barely get out of a chair. Walking was very difficult. I've been on Lupron (ADT) since early March and also now doing Taxotere chemo. I got off pain meds in 3 weeks after ADT started and pain was gone completely in 5 weeks. PSA went from 400 to .6 in 2 months. I now feel better than I have in a long time.

    This just shows there is a lot hope for him and others with advanced stage PCa. My GP had no clue how treatable advanced prostate cancer is. Some people go quite a few years with good quality of life. There are several lines of treatment available.

    Hope everything goes well with his treatment and he gets the kind of miraculous recovery that many of us have had. Good luck.

  • so glad you have been able to stop your pain meds. That is what my husband would love to do - heres hoping that point is not too far away for him. He is nearly finished 5 days of radiation therapy so we'll see how things are after that. All the best to you

  • Hello. Welcome.

    I, too, would be interested to know if his PSA responded quickly to ADT treatment using Lucrin. (Where I am in the USA the exact same drug is called Lupron.)

    There is hope. I was diagnosed 3 1/2 years ago with advanced prostate cancer to very numerous "mets" to bones and lymph nodes, and a ridiculous PSA of 5,006. Great pain to an abdominal lymph node and around a lower back spinal "met". After going on ADT my pain melted away within a month, and my PSA plunged down to less than 2.0 with 4 months.

    If his pain does not get better soon, you may want to press for more/different scans to examine the structural integrity of that part of the spine, just in case.

    This is an informative short film produced in the UK following their STAMPEDE Clinical Trial, involving early use of the Chemo agent Docetaxel,

    vimeo.com/149626704

    Other info is here, which you might also browse, before any next discussions with his doctor.

    stampedetrial.org/

    If we know your general location in the world, we might also help point you to some local support groups or other support resources/organizations nearby.

    Right after an initial diagnosis is a very hard time. Hang in there. Many things will get better as you share, learn, and talk about it all during these first few months.

    Charles

  • Hi Charles - we don't know how his PSA has responded to the ADT, but the Firmagon that he has been on for nearly a month is a drug that is designed to drop the testerone levels quickly and I'm sure his pain is slightly less. We are in Qld Australia. I am in touch with the Advanced Prostate Support Group in Brisbane and they are a very knowledgeable and supportive group. will let you know how his PSA has responded when we find out - take care and thanks for the words of support - its so hard to know how to feel in these early months, but i'm confident that things are moving in the right direction now - take care

  • So glad to hear that you are already connected to a strong support group in the greater Brisbane, Qld Australia area. I recall briefly meeting your amazing Jim Marshall at a recent PCRI Conference in Los Angeles.

    (For those who don't live in Australia, see also:)

    jimjimjimjim.com/official-h...

    Charles

  • So much to think about, but you are getting great help. I was 64 when I was diagnosed and I had 40 radiations. Everything settled down for 4 years and then I was told that the main cancer was killed off, but I have a fast growing prostate cancer that has metastasized. So the gave me 32 more radiations and put me on casodex for one month, Lupron injection every 3 months, and a bone strengthener once a year called Xgeva. It has been 5 and 1/2 years with few side effects. I have gained weight, the hot flashes have stopped, I have some pelvis bone pain, I no longer have sexual desires. My life is different, but I am grateful to be alive. My PSA has been 0.00 since the third month. Lupron is a drug that removes all my androgens (like testosterone, methyl-testosterone, etc) and this stops most of my cancerous cells from multiplying into tumors. Some single cancer cells break off and move into my blood stream. They go all over my body, but many collect in the lymph system and they have affinity for inside of bones of the pelvis region. When they attach to the bones they sink into the bone and make pock marks on the bone. After millions of cells do this the bone is weakened. So the Xgeva shots keep the bones from becoming brittle. So now I am 72 and I get around pretty well. I take a nap in the afternoon and I use a CPAP mask to keep me from snoring. I think the CPAP has helped me with PCa by increasing my oxygen when I sleep. Gook luck and keep learning!

  • you're right - you can never stop learning. Its an advantage to be well informed and know whats going on. My hubby has been told he has adeno carcinoma which I understand is a slower growing type cancer. I'm glad there has been treatment available to help with your bones and that you're doing well - thanks and take care

  • DiRi

    Stay strong and be a pit bull when it comes to dealing with your doctors...

    Good Luck and Good Health to you all.

    j-o-h-n Friday 05/12/2017 5:26 PM EST

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