Stage 4 ~ Now Losing Blood Somewhere

[drb1966]

Hi, my husband was diagnosed stage 4 with lymph node and bladder neck margins involvement 3/2018. He has done chemo, radiation, and hormone therapy over the past 5 years. His PSA increased quickly starting in October 2022 and by December it was 27. Hormone therapy isn’t working as before, it appears he has built up that tolerance. Radiation did not help his bone pain this time, either. PET scan shows the cancer in his ribs, clavicle, throughout his spine, pelvic bones, hips, new lymph nodes, and near his voice box. He is going to try Xtandi again. That is the jest of his history, but now we learned Monday that he is now losing blood somewhere and they do not know where. He does not want any additional testing to try and locate its origin. His labs are low enough that he is close to requiring a transfusion. His labs are overall a mess. I was hoping you could share your experiences, if you have been in a similar place, with losing blood and identifying the root cause. I realize every man is different and I not trying to diagnose anything at all… I’m truly just looking for what others may have experienced. He asked his MO for a ‘rough’ new prognosis and didn’t get a straight answer. Although he understands why, I think he was looking for what he could expect with this loss of blood finding. I sincerely wish no one on here has experienced similar situations, and am so sorry to meet you here, but I sincerely appreciate any experiences you are comfortable sharing. Thanks so much…

[tango65]

All patients on ADT and anti androgen drugs develop normocytic normochromic anemia. If this anemia is getting worse he may be losing blood or the cancer may have invaded the bone bone marrow diffusely causing a decrease in blood cells production.

A simple urinalyses and a test for occult blood in the feces could give some idea if he is losing blood.

Are the WBC, and platelets OK or low?

[drb1966 in reply to tango65]

Thank you for responding. His WBC, hemoglobin, platelets, and RBC were all low. His anemia is much worse, as well.

[tango65 in reply to drb1966]

It seems there is a bone marrow depression most probable caused by the cancer and perhaps some of the treatments. He may not be losing blood.

[EdBacon]

Cancer invading the bone marrow interferes with the production of blood cells, typically red blood cells and platelets get hit the hardest. May still be treatable though.

[Stage4vizuals]

I am sorry your going through this. I am a 62 year old male diagnosed with Stage 4 in December of 2018. I have pretty much been through everything your husband has - only my PSA is over 600 and climbing fast.

- I start a clinical trial PT-112 on March 31, which I have been trying to get into since last November, at that time my PSA was 3 and not yet doubling every month. My Docs have also tried to schedule me for Lu-177, but unfortunately am unable to get this in the US do to supply issues. At this point, I am pretty much praying for a miracle.

You and your husband are in my prayers good luck.

[Spyder54]

dear drb1966, and Stage 4 Vizuals.

First, I am so so sorry your journey has taken these terrible turns. We, on this site are all Stage 4 metastatic and all are trying to live. It seems that there are always options, but fewer and fewer as the disease progresses. For the record, I am still Hormone Sensitive at 2-1/2 yrs, so clearly in a better place.

I just met with a new Oncologist up in Raleigh, NC with Duke Univ., and he told me when my PSA starts to rise, get Provenge (Sipucel-T). He said dont delay, it is very controversial, but he knows it works. The problem is, he believes, like so many therapies, that early is better (ideally PSA below 10, and that he has several Men at 5 yrs + after receiving Provenge. So with both of your PSA’s higher, I am not sure of its benefit for either of you.

I asked about BAT (Bi Polar Androgen Therapy), stopping ADT2, taking Supra physiological High Testosterone (like from zero up to 2,000 ng/ml), for 1-3 months, then restarting ADT2 to try and re-activate it and get back down to low PSA levels, then back up. This seems to renew strength and stamina in the High T phase, and confuse the PCa, while killing off PCa cells in the low T phase. He said No, not now, wait until you have exhausted everything, then give it a try. It almost seems that so many issues are related to extended use of ADT2. The guys currently on BAT would argue that early is better, but this Oncologist does not trust it early when everything under control, he says wait until exhausting most available options. Does anyone really know?

With BRCA1/2, and some guys without, have had late term success with Pembroluzimab. I wish I had the answers for both of you. Just some thoughts you may have not considered. Best of luck to you and yours, please keep us posted with any success you may find. Blessings your way, Mike

[Seasid in reply to Spyder54]

I think Provange is a good idea at low PSA. Unfortunately I am in Australia and don't have 120k US dollars to organize it in LA from Australia.

I could do BAT in Sydney but I believe for me now it is better to wait with BAT as I am still hormone sensitive.