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[Cooper63]

My husband is 78 and was diagnosed with cancer of unknown primary (mets to a number of bones in the spine and lymph nodes) but likely prostrate cancer in February, 2018 after he had a TURP (no cancer detected through TURP tissue). We live in Canada. Because they never found a primary tumour there is no Gleason score. His initial PSA was 46 after TURP. He started receiving Firmagon in April (PSA went down to 13 and then went to 24 and now 36) and so they now consider him to be castrate resistant. The medical oncologist has left him on firmagon and has added zytiga and the steroid dexamethasone. He had a.bone scan last week and we are waiting for the result. My husband is very symptomatic with bone pain even though he had 5 doses of palliative radiation to help with the bone pain. He is also on high daily dose of morphine. They will not do any surgery as they don't know the primary. He was in hospital 3?weeks ago with hypercalcemia which is now under control. A medical oncologist from a teaching university who specializes in prostrate saw my husband almost 3 weeks ago and thinks that it may be small cell prostrate cancer but does not recommend chemotherapy due to my husband's weakened condition. All his blood levels are not normal but are not serious (hemoglobin ranges from 82-99, white blood count is high and protein is low). He has lost since February over 60 pounds - he gained about 15 pounds from steroids but is now losing weight again. A palliative medical oncologist has advised us that my husband will probably not make it to Christmas due to his blood markers? Iwould like to tell you all that I have been following this site for a few months now and have learned so much about prostrate cancer and am blessed to have found this site and all you brave men and women. I don't know what the future holds for us (I guess nobody does) but if you have any suggestions on things we can do or treatment he should have, we would appreciate any and all.

[softwaremom00]

My husband has small cell prostate cancer. His PSA was never very high. Often with small cell prostate cancer there is high chromogranin score. You might ask them to check that. Have they done a biopsy of the prostate ? Initially my husbands cancer was unknown origin.. his was discovered through a hip fracture. The biopsy determined that it was neuroendocrine or small cell prostate cancer. He went through two sets of chemo and a treatment of Strontium. This seemed to kill most of the cancer(I hope it killed it all) He is currently on Lupron shots and takes Zytiga daily. He also does a lot of nutritional supplements and eats a plant based diet.

My husband's strontium and second chemo were interesting treatments. It was a very low dose chemo that was meant to radio-sensitize the chemo to the Strontium.. it really helped and was very easy to handle.

lots of hugs and prayers for both of you!

Softwaremom

[Cooper63 in reply to softwaremom00]

Thank you so much for the information. They did not do a biopsy of the prostrate as they didn't detect any cancer there in scans and the TURP. They did a bone marrow biopsy which found malignant cells but there was so much crushed cells that they couldn't determine what the primary cancer was. We have a meeting with his medical oncologist this week and will ask what his chromograninmis and also about strontium. All the best to you both and I hope they killed all that cancer ):

[Hidden]

Sorry to hear about the situation.

I can see why they want do a biospy because conventional prostatic adenocarcinoma (non-small cell) doesn't make the kind of bone lesions that cause hypercalcemia. Small cell prostate cancer as well as other cancers can make lytic lesions that increase calcium. Once you know the results of the biopsy, you will be able to make a decision on what's best for treatment.

I wish you the best and let us know what they find.

[Cooper63 in reply to Hidden]

I am just learning a little more about small cell prostrate cancer but you are well informed and what you say makes sense now to me. We are hoping bone scan shows some good results in shrinking bone lesions and thank you for your good wishes!!!

[George71 in reply to Cooper63]

There is a trial for lu-177 in Houston going on right now. It is for exactly what you are describing... rising PSA after Zytiga. it is like liquid radiation that seeks out cells that give off PSA. Only radiates about 125 surrounding cells. Can also result in stimulating the immune system into identifying the cancer cells. Also Olaparib hypnotherapy is causing an immune response.

[Cooper63 in reply to George71]

There is much to learn about prostrate cancer and treatments. Thank you for this information George71

[George71]

did you look into lu-177 in Germany

[Cooper63 in reply to George71]

We will mention this to my husband's medical oncologist.Thank you!!

[j-o-h-n]

"my husband will probably not make it to Christmas". Drop that thought because no one (except God) knows who and who isn't going to make it to Christmas. Keep the faith.

Good Luck and Good Health.

j-o-h-n Saturday 08/18/2018 11:33 AM EDT

[Hidden in reply to j-o-h-n]

I agree. One thing I've learned from cancer is that noboby has a future, even doctors that make statements like that. Except for purposes of general planning, the future does not exist. The more you can learn to live in the present tense, the happier you will be. That's been my experience.

[Cooper63 in reply to Hidden]

I am a work in progress and need to remain in the present for my husband ):

[Cooper63 in reply to j-o-h-n]

My husband is so calm about everything and just takes life one day at a time. I am the one that needs to work on not worrying about tomorrow. Thank you for your comments.

[Hidden in reply to Cooper63]

Having cancer has forced me to learn some things, living in the present is one of them.

[j-o-h-n in reply to Cooper63]

You must stop worrying it's contagious... My wife and I have come to the conclusion that worrying gives you warts... so we stopped in order not to spoil our "good looks". So please do not spoil your "good looks" by needless worrying. Mr. Cooper is lucky to have a wonderful and caring Mrs. Cooper.

Good Luck and Good Health.

j-o-h-n Saturday 08/18/2018 6:07 PM EDT

[Cooper63 in reply to j-o-h-n]

We will do everything possible not to spoil our "good looks". Funny that my husband is always saying that people say he is looking good but they don't tell him he's good looking..haha. Thank you j-o-h-n !!!

[LisaBarness in reply to Cooper63]

Me too. I try so hard to stay in the moment and not make myself sick worrying about tomorrow but it’s a terribly difficult challenge most of the time... hang in there my sister- you are definitely not alone ♥️

[Cooper63 in reply to LisaBarness]

Hi Lisa. Carol here. I have been working on living in the present and thought it was working well until this hit us. It just shows me that I need to learn that it is only today that exists. Than you for your encouragement. Warm wishes to you Lisa for the best today!!!

[Bball]

My 80 year old husband had a great deal of pain from bone mets. The combination of fentanyl patch and hydrocodone has worked very well for the pain and also being more clear headed than morphine. Good luck.

[Cooper63]

Thank you for the information. Will check it out!!!