Really struggling, teary, worried about my husband. Diagnosed 1 year 3 months ago. PSA 556 and mestastasis to bones, bone marrow, lymph nodes throughout. 3 week hospitalization and started docetaxel then. Did 10 rounds. Still on Lupron. After chemo two months before PSA rising and he was put on Xtandi (April I believe). Now have had two consecutive PSA bumps and PET showed increased activity in prostate. He wasn’t ever a candidate for surgery or radiation before. He has been on morphine ER and norco for breakthrough this entire time but pain and fatigue definitely worse- though he can really pull himself together for a few hours- this was Christmas! Afterwards though it’s bed for loooong periods of time. All of a sudden he’s having REALLY frequent ruination. Like, 6/7 times overnight. Went to lunch yesterday and he had to go 3 times in an hour. Says there’s no pain or blood but obviously I’m concerned about the PET, PSA and increased ruination combined. Think Xtandi is about done. Currently (aside from pain meds) he’s on Lupron, xgeva, Xtandi. Has done docetaxel, casodex, degarelix. Can’t do surgery. Can do radiation for urinary symptoms. He was supposed to start this week but we’re putting off bc we got into a dr at UTSW on Wednesday. Don’t even really know what I’m asking. Lost. Confused. Sad. Scared. Not sure what’s next. Suggestions and experiences welcome and appreciated. Thanks y’all.
Looks great, but think Xtandi is comi... - Advanced Prostate...
Looks great, but think Xtandi is coming to an end.
My heart goes out to both of you. Are you close to Mayo in Rochester, or Memorial Sloan Kettering or MD Anderson in Texas. I wish I had advice. There are such excellent knowledgeable people on this site that can definitely help you out!!!
I do love this site. So many much knowledge here! We are in Dallas, have been to MD Anderson and University of Chicago. Ironically we’re just now going to UTSW even though it’s only 30 minutes away/ have appt this week. Trying to get into Mayo. Any Dr advice for Mayo would be welcome! Or frankly any hospital/dr suggestions. Thanks for responding.
I am not in the same place but wanted to reply because of your bravery in telling your husband's story. Radiation therapy can also be used to help reduce bone pain from metastatic PCa. On Wednesday you may hear about abiraterone (Zytiga), which may be an option if Xtandi isn't working. A Taxotere rechallenge may be possible. And others on this site will and should weigh in who have been or are now where your husband is. Please be open to suggestions from the doctor on Wednesday. And please know that there are a lot of men out here with you both.
Thank you for reading and replying. Helps to know we (patients and their people) aren’t alone out here. Sometimes I just need a place to vent where everyone doesn’t say “but he looks so healthy! Look at all his hair again! He’ll be fine!”...when I know that they seen him for an hour and not that it takes 12 hours to recover from the energy that one hour drained. I believe radiation was not offered because his mets were so diffuse. Basically long bones in his legs up to base of skull. Thankfully not any higher. I have heard of Zytiga. We know it would be that or Xtandi after taxotere and honestly I have no clue why they chose Xtandi or why it’s never been mentioned again. Only other thing discussed has been carbotaxol. Right now he’s fairly adamant he does not want more chemo but hoping I am also hopeful he’ll keep an open mind. We have six children- and our youngest is six. It’s been very important to him that he not “look” sick. It was kind of scary for our two youngest when he was going through chemo. Thank you for “listening” to my long vent!
Hey Katy - I can tell you as a wife caregiver, something that helps me hold on and persevere is Lion’s Mane mushroom extract. I get it off of Amazon, the 20:1 extract that is double extracted. With the months of ups and downs and emotional endurance needed, I won’t be without it now. Praying right now for you both and here is the link to the one I got if you or anyone else is interested:
My husband takes it too as needed.
Lions Mane Mushroom Extract Powder (2oz-57gm) 20:1 Concentration (ORGANIC) amazon.com/dp/B00VN7G8IM/re...
Thank you so much for the prayers. I didn’t really believe in the power of prayer until the last year but I am convinced now. I will absolutely lol at that. I have heard so many suggestions about everything- this is the first time in a long time I have heard something new! I appreciate you sharing, praying, and validating that this roller coaster can be rough- even when you’re not the one with cancer. I appreciate it. Katy
Dallas! Family in NC though. I went to college in California but never could ditch the y’all. 
Surgery has never been an option bc of his bone marrow involvement. He spent three weeks getting blood transfusions until the docetaxel started to work. He’s actually never even had a biopsy of his prostate. After about a week of being hospitalized with no improvement they had to do a bone marrow biopsy so they could know how to more definitively treat him- and they found prostate cancer cells in his bone core. It was all very weird. He still can’t take blood thinners though even though he has had several small clots- he is just very high risk of bleeding...which actually is my other concern. His red blood cell and platelet counts are lower than they have been since he was discharged last year. Ugh. Hate cancer.
Has he been tested for a urinary tract infection?
Such a simple thing, and yet- no! Thank you! Will ask at dr appt wed!
Hi Katy, It is heartbreaking to see your picture, hear about your young family and realize all you and your husband are going through. You don't have to answer me but perhaps you might consider sticking with and putting your faith in one place of treatment as it might be easier on everyone. I know you feel desperate but MD Anderson has a great reputation and consistently ranked high. I am not sure if its the most convenient for you, though. MD Anderson also gives you access to clinical trials from which your husband may benefit.
Thank you so much for your kind message. Made me cry. Almost everything makes me cry these days but so much of it is the compassion and kindness of people we don’t even know. If I could have a “do-over” I would have insisted from the beginning that we find our regular oncologist at UTSW. However, when you spend three weeks inpatient and ICU with an oncologist who visits every day, and whose willingness to be aggressive and fight for Joe probably saved his life- I just couldn’t bring myself to “leave” him.I know that’s probably weird but there is an attachment there, you know? We really liked Dr. Korn at MD Anderson and would have gone there but he was kind enough to consult with us, keep in touch with us as well as our Dr, and keeps his eyes out for trials, etc. One (if the many!) hard things has been the discouragement of not getting into any trials. Joe’s presentation was weird, his gene mutations were all bad but not ones that they’re having progress with. He’s applied and been denied for 8 trials so far, and finally got into a phase 1 trial, and then I read about it and just cried. Anyway, again for listening and your kind response. Just kind of in a feeling sorry for and (more) scared for our family. Wednesday we our meeting with and moving our primary oncologist to Dr. Courtney at UTSW who is supposed to be excellent. Here’s to hoping this will be a better week! 
Katy
Oh sweet girl, I will keep you and your family in my prayers. We started the first time with our children being young and they would do fun things for their dad that made them interact with his cancer journey. They gave him a toy shark and they called it his cancer shark, it was to eat the cancer. Lol Ten years later we have had a recurrence but I noticed my husband brought out his cancer shark and gas displayed it on his dresser. Very smart folks on this site so keep searching. I’ve heard some of the guys talk about spot radiation on here even when they’ve not taken out the prostrate . My husband rests a lot too and doesn’t have a lot of energy. But us staying upbeat helps them. I would think getting the bone morrow addressed would be huge. Sorry I didn’t know more but felt compelled to write. God Bless
Kim wife and caretaker to Mel
Crying again. My I’m a mess. 😬 Thank you so much for sharing your family’s journey with me. I love the cancer eating shark. Ironically I’m a therapist but it’s always different with your own children. We have been awful about going to the cancer support group even though they do have a nice kids program. Maybe we will need to start with a shark. 😊 Yes I think spot radiation is what they are intending to do, based on urinary problems and where there was the most activity on his PET scan. We do stay upbeat most of the time. My husband is one of the most positive people I know and I truly believe that and prayer are why he is still here. We were given a 50/50 chance at diagnosis when he was hospitalized that he would survive to leave the hospital- due to the bone marrow involvement- it did make things really complex. After that he was given 3-6 months. Here we are at well over a year and we have had some really special memory making moments with each other, our extended family, friends and our kiddos. Aside from cancer it’s been a life and perspective changing year. God bless you for taking the time to respond. ❤️
So sorry to hear of your dear husband's pain/fatigue symptoms, even as you are considering a possible next treatment option. It's never easy to consider, but the conversations about quality of life and practical planning for caregiver/family support are often better done in parallel with the purely medical treatment options & decision-making. Perhaps you guys might benefit with more of a Palliative Care & pain management team on your side, locally at UT Southwestern near where you live in the Dallas area. Perhaps you can get some help to stay ahead of the power curve when the "logistics" of things may eventually start to impinge on things for the 6 children and the family life of a caregiver who needs to maintain continuity, plan for the future, and avoid burn out. Local Support Groups might be an option, too. A while later, you may also want to seek local assistance in regards to Hospice support options. Etc.
This link has a number for the local Oncology Social Worker at UTSW who would probably be happy to conduct a full-on patient/family needs interview, and help to get the ball rolling on any number of things that might help things go better down the road.
utswmed.org/cancer/support-...
Patients and their families may not be "cured" of serious disease, but they can often be "healed" in many ways,
Just some thoughts...
Charles
I can’t even tell you how much I appreciate your willingness to bring in the oh so taboo talk that is also oh so necessary. I’m a therapist (LCSW) and have worked both in social work and pastoral care at Children’s in Dallas - most of our docs are from UTSW. I have to say one of the hard things for me has been how closed I have found our medical team in having those difficult conversations- even when I have basically begged them to. With six children ranging from 6-16 it is imperative that we know where we are realistically. Doesn’t mean we can’t hope and pray for miracles but to not adequately prepare our children would be a disservice (trauma really) for them that would only complicate their grief. I have found that the research physicians are more open and honest and I really appreciate it. Praying we will find a balance of hope and also honesty at UTSW. The social worker could definitely facilitate that conversation. Texas Oncology (or at least our Dr there) is wonderful but that is not their strong suit. When joe was discharged last year from the hospital he left 25 pounds lighter and on a walker. Our bed was downstairs in the living room and we had help basically 24/7. I’m so grateful that we’ve had a good period of relative normalcy but also have learned to say yes when people offer help or to bring meals, etc. My husbands parents actually rented an apartment near us and spend about half the week here to provide help with the kids. We are very fortunate. I know everyone does not have such a strong safety net of support. I appreciate your comments and hope others will see them as well and open up more to the idea of those talks. It’s not “giving up” - but living your life to its fullest with the best quality of life and also acknowledging that time will not last forever. Thank you for sharing.
So he still has his prostate ....was it treated--did he get radiation? If they didn't, they should radiate it, or do HIFU. I like Gus's idea as there is some suggestion that Xtandi with indomethacin may work synergistically(like a team). Is he on a statin drug? That is shown to help and metformin may help also. Look into the NCI match trial. If he has not had gene mapping, then they do it--free, and they will match your husband to treatment based on his gene mapping. Plenty of ideas from these posts you received. Good luck.
Thank you! Lots of things to consider. He does still have his prostate. Never had a prostate biopsy. When diagnosed he was bleeding so much they wouldn’t do one. Other than high PSA (556) and “irritated looking” prostate- he had no symptoms of prostate cancer so first week was treated with antibiotics. Lymph nodes swollen throughout body but only slightly, and with bone marrow involvement they were also considering leukemia vs. non-hodgkins lymphoma. Oncologist thought it was an infection. But even when they realized it was prostate cancer (from the cells in his marrow) m, he never had a prostate tumor and the cancer was just everywhere. So they said no to radiation, surgery wasn’t possible. After chemo we tried to get radiation and insurance denied, and MD Anderson recommended against so we gave up on that until he recently started having urinary symptoms and they were able to push it through insurance as palliative. Is Foundation One Report gene mapping? He did have that and it didn’t give much to go on other than phase 1 trial for PTEN loss. Genetic tests (BRCA, etc) all negative. Will definitely bring up the medications you mentioned on Wednesday- really, really appreciate all the great feedback and taking the time to read and respond.
You didn't mention Provenge - if nothing else, it should stimulate his immune system to overcome the myelosuppression. If he could get his blood counts back up, a radiopharmaceutical, like Xofigo or Lu-177-PSMA-617 (now in clinical trials), may be helpful. UTSW is a test site for the Lu-177-PSMA-617 clinical trial if his bone marrow function improves enough:
clinicaltrials.gov/ct2/show...
There were two very recent randomized clinical trial of radiation to the prostate after metastases have been discovered (STAMPEDE and HORRAD). STAMPEDE found that it only added side effects and NO survival increase in men with multiple metastases (see article below). If he is already peeing frequently (urinary retention), it will only make it worse. A laser TURP may be able to give him some relief.
pcnrv.blogspot.com/2018/09/...
Top medical oncologists in your area are Eleni Efstathiou at MD Anderson or Oliver Sartor at Tulane. I'm sure UTSW has some good ones too.
Thank you Allen. You are always a wealth of information. It’s kind of mind boggling to me that no one has mentioned any of those options to us. Our current MO did tell us about the STAMPEDE and HORRAD results, that they didn’t apply to joe bc of his high tumor burden but basically suggested we go for it anyway as did the radiologist. We definitely were under the impression that if nothing else it would help his urinary frequency. He actually got all marked up for radiation as he was supposed to start tomorrow - before we got the call that we were in UTSW on Wednesday. Glad we didn’t start that and will have the opportunity to ask some more questions now...and hopefully a trial will come up. The bone marrow issues have been a big barrier to participation in trials so far but we’ll keep riding this all out and see how it goes. Thank you everyone for all the info and kind words! Needed it tonight and definitely feel a little more grounded now. Thankful for this group. KT
You're a double mensch in my book....
Good Luck, good Health and Good Humor.
j-o-h-n Monday 01/07/2019 7:28 PM EST (My name day).
Only three comments from me.... 1. Don't fret about crying, cause the more you cry the less you pee. 2. You've come to the right place cause there's a wealth of knowledge here (not from me however). And finally "Remember God is on your side".
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 01/07/2019 7:43 PM EST (My name day).
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