Looking for help

Hello to all,

My husband has stage IV advanced prostate cancer and has been seeing an oncologist for the past 4 years. He is on Lupron and Xgeva and Zytiga w/prendisone. Last year he had Provenge treatment. He has pain all the time, but his PSA is 0.4. He likes his Medical Oncologist, but I thinks he should be seeing a Oncologist who specializes in Advanced Prostate Cancer. We live right out side of Boston. On his last visit I asked the DR when should he be scanned again? He said not until his numbers start to rise. Should I be concerned? I think for my husband its a comfort level and he is scared. Suggestions? Recommendations? Thank you all in advance and God Bless you all in fighting this horrible diseas

18 Replies

  • Yes, you should be concerned, just because he's having pain, and his doctors should be prescribing adequate painkillers. I refused strong painkillers until it was absolutely necessary. Where is the pain, and does he have bone metastases?

    And I think that it would be wise to find an oncologist who specializes in prostate cancer. I live in Chicago, and unfortunately I can't travel to the specialists, long rides in a vehicle are painful to my spine, even with morphine for pain and Dilaudid for breakthrough pain.

    But I am satisfied with the level of care that I have---my medical oncologist is the Director of Medical Oncology at the cancer center where I'm treated. So at least I have the "top dog" there, even if she isn't a specialist in prostate cancer. And the cancer center is only about five miles from my apartment.

    But your husband's level of comfort should be the first priority. Nobody with cancer should have to suffer pain.


  • He has multiple bone Mets and lymph node involvement. Back, hips, shoulder, lungs...

  • He should definitely be on strong painkillers, in my humble opinion.

    My own metastases are in spine, sacrum, "innumerable" pelvic lymph glands and left femur, and I also have arthritis. It seems to me like he has even more mets than I do---it hasn't gone to my lungs.

    But the location of the metastases affects the level of pain more than the number of metastases.

    My medical oncologist and urologist both decided to place me under palliative care, which is mainly pain management. I had refused strong painkillers up to that point, but they could see that I was in a lot of pain and I couldn't conceal it any longer.

    And I forgot to ask if he's on anything at all, other than over-the-counter painkillers. I still have constant pain, but it's controlled and kept to a tolerable level.


  • Advil once in a while.

  • Has he been tested for a possible neuroendocrine component to his PCa? This could explain low PSA with pain and radiologic progression.

  • What is that?

  • Ladysings, I just googled neuroendocrine component prostate cancer. it'll talk about this..

    new information to me.. not something I want to hear or even think about actually, tired of the whole business... our lives get robbed while we are trying to live.. there's got to be another way of BEING...!!

  • I love what you wrote about just being. meditation helps me to ground myself sometimes when I'm so afraid for my father. I sometimes feel like an intruder on the bored, but in many ways mY dad and I are one, and for him just being means funny movies resuming life and making plans for further business ventures. for me just being means meditation and using it daily. the work of audiodharma.Com and pema chodron audio help me to inhabit a state of being my mind too often complicates just be my friend . xoxo

  • Hello - You should consider seeing Dr. Mary-Ellen Taplin at Dana Farber, which is near you. I am not a patient of hers but know someone who was treated with Provenge at Dana-Farber. You may know that PSA doubling time is important, so I wonder what it was before the previous treatments and what it's doing now, after the Provenge. Good luck to you both!

  • Hi

    I agree with going to see Dr. Taplin at Dana Farber Cancer Center. I went to see her several years ago for a consultation. She is very knowledgeable. She splits her time 50-50 between research and clinical.

    You did not say when he had his last set of scans but generally speaking in my experience I get re-scanned at 6 months if there is an increase in symptomatic pain.

    Also inquire at Dana Farber if they have or can reccomend a palliative care physician.

    Palliative care physicians are specialists in relieving pain and making the patient comfortable. Your husband may or may not need strong pain medication. I have extensive bone mets throughout my body plus a bunch of lymph nodes and mets in my liver and so far manage my pain with a powerful NSAID.

    However you need a qualified medical expert to help you. I am not an expert only a fellow patient.

    I hope this helps

    Bill Manning

  • I have been receiving treatment at Dana-Farber for the last 13 years. Dana-Farber is one of the premier cancer treatment centers in the US and has a genitourinary department focused on prostate cancer. Mary-Ellen Taplin is a highly regarded medical oncologist and cancer researcher specializing in prostate cancer. She treats a couple of my friends who very satisfied with her care.

    I agree that your husband needs pain and treatment management by a skilled oncologist. Taplin fits that description very well.


    Cheers, Aussiedad

  • He sounds like a candidate for radium-223...great PSA number

  • From experience, I found that magnesium helps in reducing pain. I used Natural Vitality Calm. I was taking a teaspoon, mixed with a glass of water, very couple of hours.

  • A friend with cancer told me she was helped by circuman with black pepper capsules up to ten, as she does not take any medicines.

  • Yes, you should be concerned ... Get a Gallium 8 nuclear scan ... You'll have to really search widely because is new - state of the art scan and make sure you get a bone scan done ... That tells if the cancer has metastasised - I.e., has it got into the bones ... I've written about this scan here a number of times so chase it up.

    Pax et bonum,


  • I can also recommend Dr Mary-Ellen Taplin at Dana Farber in Boston. I have been seeing her for 4 years. My Gleason score was 9 (4+5). She will be able to tell you the most appropriate treatment and if desired, enroll you in one of the clinical trials that DF runs. She will also explain any questions you may have. It is common practice to wait until PSA goes above 2.0. I am in a drug trial (Xtandi) and I have been getting scans every 12 weeks for the past 30 months, my PSA has been rising since last June (0.07) and is now at 0.73 and I had new metastases show on my last scan (two weeks ago). A lot depends on how fast your PSA is rising, using a factor called doubling time. Mine is doubling every 4 months (quite aggressive). Here is the link for calculating the doubling time. mskcc.org/nomograms/prostat... Note this nomgraph will not accept any PSA less than 0.10 as a starting point. I recommend you use the internet to search for information and other groups that support Prostrate Cancer. There is a lot of info out there and guidelines. But everyone responds a little differently.

    Dr Tapkin can assist in searching for the best pain meds for your husband. Pain Mgt has a strong emphasis at DF. Everyone from sign in at the Lab registration desk, vitals check by the medical technicians, and oncology nurses will ask about your pain levels.

  • I have never heard of a PSA of 4.0 with all of the metastatic sites you have described. Are you sure you husband doesn't have two separate types of cancers?

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