Dad was diagnosed in 2016 stage 4, bones and lymphnodes. We dont have a gleason score because his diagnoses was found through a hip xray after a fall and they biopsied his hip.
He has had lupron, xgeva, bicalutamide and now he is on Xtandi. Dads last bone scan psa were July 8th. His bone scan showed stable osseous metastatic disease and his psa was 1.1 which is low for him. He is 90 and fiesty and mobile with a walker, lives with my mother who is 89, super mobile and runs errands probably 4 days a week, she likes to get out.
Last spring dad started having headaches, we thought it was from the Xtandi but they got worse. I asked his MO to add a head CT to his July 8th bone scan, his MO said "if you're worried about prostate cancer to the brain, its less than 1% its not a concern and his disease is stable. I said, "he normally doesnt have headaches and they are getting worse, somethings' not right." That day started out awesome, dad was in a great mood and his bone scan was good and his psa was great and I get a call from the MO in the waiting room after his head CT and they tell me he has a 5.2 cm dural mass and yes thats centimeter NOT mm He said, "I'm sorry to tell you this but he has a large mass, I also still dont think it is from his prostate cancer." Things moved quickly from there, dexamethasone was called in and we picked it up on our way home. I was in complete shock. He had an MRI 2 days later and a referral to a neurosurgeon, they had a tumor board meeting with 8 neuros, only 1 of 8 thought it was from his cancer. They cant do surgery, he's 90. They did whole brain radiation the next week, 10 rounds. The radiology reports go back and forth, more likely a meningioma with direct leptomeningeal enhancement but could be from prostate cancer. They told us that they wanted to shrink or stop the tumor from growing and slow down the lepto enhancement to stop the headaches. They dont want to put him through lumbar puncture because it can take 3 to get a diagnoses and that would not change treatment. So far, if it was from the cancer, he has outlived it as they said could be 4 weeks to 4 months and its been 6 months. His last MRI showed stable tumor, unchanged in size but more lepto enhancement which the report states is either disease progression OR inflammatory changes post radiation, ugh. Dad is doing well. His appetite is good, he gets around good he only has a headache maybe 2 times a month. He wants to still get his normal xtandi and lupron doses and live one day at a time, he does not want hospice.
I have no idea what this next visit will look like with his MO, he is due for a bonescan and psa draw to see if the xtandi is still keeping the bone mets at bay. I do know that if they mention hospice, dad will say no. The confusing thing is that his neurosurgeon blatently said, its not mets because they usually dont look like one large mass that only has lepto enhancement around the area, he thinks its a large atypical meningioma that is causing the lepto inflammation, in that case he said dad could live another 2.5 years is the average for those cases. The more I read about lepto it progresses fast and it seems he is getting better with time not worse.
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Does your dad understand how fortunate he is to have you helping him through this awful ordeal? Your post suggests that you are as "on top" of his situation and options as you can possibly, so I have no new suggestions.
Awe thanks, I have taken dad to every appointment since 2016 while working in healthcare myself full time but I only have one dad and I love him to the moon and back!! I have researched and connected with everyone that could be beneficial with his treatments.
Every single time were driving to an appointment he says "you must really love me, and I am not even useful anymore," I say "dad, I would move the earth for you, and sometimes in life the tables turn, and now its my turn to take care of you and your useful to me."
I cherish every drive, every appointment and all the years extra with him that I didn't think I would have. I just dont want him to suffer with this whole brain diagnosis, thats my big worry now.
My father didn't have PCa, but he did have a Glioblastoma Multiforme. He moved in with us during treatment. It was much "easier" to deal with than PCa has been, and he did not suffer. Of course, sadly, the survival time is much shorter. The problems he encountered were treatment related. His last two months we had hospice help and they were angels and lifesavers! Some people actually live longer once they start hospice due to the outstanding care. Don't know if this helps at all, but thought I would share in case.
I’m so sorry to hear of your father’s new complication. Sometimes it seems like we just can’t catch a break. I second another post here that your father is very lucky to have you advocating so strongly for him. I know that he really appreciates feeling so much love and support surrounding him.
His longevity shows he is a fighter, I hope he can hang in there for a few more years to come, at the least.
Best wishes to “ both “ of you. Please keep all of us posted, we are rooting for both of you.
It's frustrating when "Doctors" ignore our concerns. After all, "We're not the experts" At every visit, which is every 3 months, my arms look like I have Bruises tattooed on them, and every post visit "visit notes" it reads "negative for easy bruising and bleeding" , I've discussed it, they ignore it. However, I have blood work done about 30 minutes prior to seeing my MO, and every time, the person taking the blood asks if I'm on blood thinners, or something that might cause this bruising. They, (onco team) also ignored my back pain for a year+, and it was my GP that sent me for an X-ray, where it was discovered I had a Fractured T-11 vertebra I hope your Father is well. Thanks for sharing.
It is frustrating, I feel everyone needs an advocate, with working in the field, I know how many mistakes can be made and things can slip through the cracks quickly. What I've learned is that you have to constantly keep on them when you want something done, be persistent. Its a shame it has to be that way but it does. For the bruising, there needs to be pressure quickly when the needle comes out of the arm and that will help a bit. You may still get some if you're on a blood thinner but the key is getting pressure on it immediately after the needle comes out. I started about 25 IV's a day when I was in radiology and drew labs as well. I cringe when someone sticks dad twice, I want to yell, just give the needle to me, I'll do it! lol So sorry to hear about your back. Thank you for the good wishes on my dad.
You just have to be super careful all the time. Wear cotton gloves. Slather your skin with Aveno. When possible, let others do the heavy lifting. So often I wished I could swaddle my husband in bubble wrap! Once you get off prednisone, over time the bruising will lessen, until another doctor decides to put you on a blood thinner.
my story is a lot different than his. I was diagnosed in 2020 with Prostate . At that time I was 63. I was in the hospital for 15 days, my PSA was over 3600. After diagnosis they started me on 13 daily Broad bream Radiation sessions. I am also Stage 4,, is in my back. They also started me on Lupron and Zometa for my bones. Soon I after I was also put on Xtandi. Within several months my PSA ended up below 1 PSA. This continued for almost 2 years, then it started trending up to 25 PSA. I did not experience any side effects with this drug, it just stopped working for me. They then tried aberaberon (spelling probably incorrect) It was a drug that was the same family as Xtandi. My PSA continued to go up for a couple months and stopped around 38 PSA. I started on a Clinical Trial in October on a phase 2 trial of a drug ( generic name Tammarack). This is a very small specific group, only 4 in the Seattle area. The result for me have been good. My PSA has gone from 38 to 28 after 3 monthly sessions. I with this as long as results continue to trend down. Side effects for me have been generally minimal, with the exception of some blisters on my feet a couple weeks after the treatment.
Everyone’s journey seems to be a little different. All the best for your dad, hopefully they will find a good combination of therapy that will work for him.
psa of 3600 ! Wow, I thought his of over 1200 was high. I hope the trial drug continues to work well for you. So you got 2 years out of Xtandi and only a few out of abiraterone/Zytiga?
I know they talked about zytiga with dad if xtandi failed but I know they are in the same family and that it may or may not work, but wanting to keep the bone mets at bay until he passes from old age is basically what they said. But he is definitely a fighter!
My brother was diagnosed 2 years ago at 62 after a car accident, his gleason score was 10... I couldnt believe it, I had our on-site pathologist request his pathology slides and read it under the microscope here so he could get a second opinion because I was suprised, and it was correct. My heart sank, having two family members now with it. He was diagnosed I believe at stage 2B , which is early but included capsule invasion. I went with him to his first few visits, he ended up having 45 radiation treatments and has been doing lupron for 2 years, so far psa is undetectable. I took him to Vegas to celebrate when he finished his last treatment.
Do you think you can draw my blood every week to test my reaction to coumadin? I'll take you to dinner........... (wife pays).....
Well your Dear Dad and I are from the same era (born in the 30's -I'm 87) and us guys think the same "we don't want any hospice". You are a wonderful offspring and he (and your Mom) are lucky to have you and your brother around. Yep, you're correct, we become the children and the children become the parents....Give my best wishes to your dear Dad (and Dear Mom) and I do hope he hits 100 so there 's someone I can share "the old days" with when I'm 97... (BTW regards to you and to your brother)....
My colleague of 40 years is in palliative care with cancer through his bone system and other places. His doctors said a few weeks ago that it was time for hospice. He said, "No way." Good for him. He fights and makes his way every day, even with broken bones, little energy, but a sparkling sense of humor. Way to go.
Haha, Thank you so much! You sound tough like my dad! Nothing keeps him down, he's a fighter for sure! I will give them your wishes and thank you for the kind words and good thoughts! I wish you the best with your journey as well, its not a fun journey to be on but cherishing each day and making the most of it, is all one can do.
When my Dad did hospice, they came to the house a few times a week and helped out. Would also come out if we were in a situation and needed help, even at midnite! So it wasnt any different for him than without hospice except he had less doctor visits and more time to do what he wanted to do. He was wheelchair bound by then, but much more comfortable and content than before hospice. And I had a ton lifted from my shoulders because we finally got him the nursing care he needed, no pain, and we all could sleep through most of the night. Was only actually at the hospice house the last 12 days when he became unresponsive. And I was able to stay with him and sleep there.
That makes sense. Dads MO and dad would like him to stay on his xtandi because it works, he has extensive bone mets that are stable, when one does starts to activate it causes tremendous pain which he did radiation on, so to avoid that, he stays on xtandi and would have to come off of that to do hospice and let the bone mets throughout his body take over growing and compressing his spine and pelvis, not what he wants right now. He will stay on his treatments for prostate cancer as long as they are working is what they both have decided. The brain thing is a whole other ballgame they are treating separately. What type of cancer did your dad have? Glad you got to spend quality time with him.
Yes, your situation is totally different. I don't blame you one bit for not wanting to stop the Xtandi.
My Dad had Glioblastoma Multiforme and was finished with RT and chemo pills. The only meds he came off of was for his BP and astonishingly aspirin did the trick. Finally could sleep through the night. He couldn't move his legs or lift himself with the triangle so I had to move him every few hours, tell him the time, get his urinal, turn on/off the TV all night long. He finally got peace when hospice started. We live in the country and my husband was able to lift my Dad in and out of wheelchair to hospital bed in living room. And get him outside with us. He said toward the end he was "as content as content could be". Of course he had no metastases, it was primary brain tumor. Entirely different ballgame than PCa. It's been 12 years and I miss him every day.
"Missing your Dad every single day for 12 years now" I fully understand that feeling since I've been missing my Dear Dad.....for 68 years....Love conquers all.
Omg, having him say he was content as content could be must have been reassuring. I just had a coworker tell me today that her neighbor passed last week at 42 from a glioblastoma, very sad, I'm sorry you miss your father, he sounds amazing. When I tell people dad is 90, its almost like, well he's 90 he's lived a long life youre lucky, why are you sad. Yes, I am but will I miss him the same if he were 60 or 90? Yes!! He's my dad! I'm a daddy's girl! He has mom call me every other night and put me on speaker because he wants to hear my voice! How sweet!! They live 45 minutes from me so I see them once a week sometimes more but I will be broken when he's gone, for sure.
For you to have gone through that with your father and now your husband, my heart goes out to you.
You're absolutely correct! It doesn't matter if he's 190, he's your dad, you love him and he loves life. He was amazing and I have the best memories.And for now my husband is doing exceptionally well, so I'm counting my blessings a day at a time.
When the subject of hospice comes up, I just want to share what an incredible difference they make in QOL. I truly hope you all have quite a while before you need them.
The MO had one ordered but the neurosurgeon canceled it stating that its a waste of another long scan to put dad through when the treatment will remain the same. They treated him as if it were cancer not knowing if its inflammation in the meningies caused by the meningioma tumor on the back of the brain. His enhancement is only on the side of the mass and they stated that lepto from prostate cancer is usually scattered throughout, who knows, I think sometimes at this stage its better just not knowing since it will not change the treatment he's getting.
Some machines are faster. They always put me to the slowest and oldest Phillips machine instead of the newest and latest Siemens pet scan.
I did the PSMA pet scan trial "ADT and me" for professor Emmett at the start of my diagnosis just to be 100% sure that all that Mets discovered by the nuclear medicine bone scan are really prostate cancer Mets. I had so many of them.
I am not a doctor therefore I don't really know what is the best. Try to get a PSMA pet scan with the latest and fastest Siemens machine but even then if it is an old cancer it may not be PSMA avid at this late stage. Difficult decision to make. The other scan is the FDG pet scan but after I did that I almost ended up doing a lung biopsy because some lung infection lesions was picked up. I put myself on doxycycline and after that the infection lesions disappeared saving me a possibility to end up with the collapsed lung and 12 days in a hospital.
It is very difficult for us to always make a correct decision but we should still try our best to understand our situation in order to make a most proper decisions. I wish you luck and that God is with you. We all need that.
I hear you about the scanners, I have a degree in radiology, worked in cat scan/mri for over 10 years. When I first started out the scanners were slow and old and would overheat, had to print and put number stickers on all of the films, haha.
There is no excuse these days with the cost of radiology exams that departments shouldn't have the best of the best for machines!
Yea, the bone scans are always questionable because there can be enhancement with arthritis. Good thing you did not get the lung biopsy, I'm not a fan of them jumping to get them quickly, alot of people have nodules and scars from infections that are not cancerous, just need a follow up scan to check for change and only if it changes should the biopsy be done because you are correct, its risky for lung punctures and chest tubes, etc.
We really do have to advocate for ourselves and our families and do alot of research on our own.
It was my private idea to ask my GP for doxycycline. I didn't discuss that with the MO or the lung specialist because I know from experience that they don't like ordering antibiotics. I had for a long time oral pain and I was visiting the dentist for months with that pain and they came out with new ideas until I had enough and ask my GP for antibiotics and the dental pain gone for good. I don't even care why. It disappeared. Our doctors are educated not to give you antibiotics at all. Antibiotics act as a very powerful anti-inflammatory drugs. I am getting degarelix injections and from time to time I was very sick after the Firmagon injections. Not anymore as I am now on permanent doxycycline plus Metformin in order to avoid antibiotic resistant strains of the bacterium. I feel better and I also recommend that to my sister she was recently diagnosed with ovarian cancer plus with the cancer of the uterus and had two cycles of Taxol plus Carboplatin infusion and feels relatively fine. Asked her oncologist to allow her to work because without work she couldn't function at all with 65% of her salary delayed two months. Her boss gave her a work where she can work alone in a room therefore saved from possible infection. She is also lucky that she is a healthcare worker hematology and can work night shift in a hospital.
My brother is also on doxycycline for repetitive eye infections, he always has to be on it. I am sorry to hear about your sister, I hope treatment works well for her. I couldnt imagine working in healthcare and getting treatment and trying to work with the symptoms, but you have to do it, like you said, to be able to live.
When dad was originally diagnosed with the brain tumor, he was passed all around and lately its back to bouncing him around, his rad onc took over because the MO said you manage this and I'll manage his prostate cancer. Then after radiation and the last MRI, the rad onc says, I'm passing him back to the MO and he can manage steroids or anything he needs, well his MO said no, you manage the steroids and follow up MRI's and I'll manage the prostate cancer. I had sent a message about his occasional headaches to the MO, he said contact the Rad onc, then rad onc says contact the neurosurgeon and the neurosurgeon said rad onc should be tending to this!!! So rad onc called me the other day to put in some back up steroid prescriptions just incase he needs to go back on and scheduled his MRI for March.
Well, you are not alone with the healthcare system. I went as an emergency patient on 2nd of January to the Sydney eye Hospital. I was examined and discharged with 2 or three diagnosis. One was dry eye, the second one was probably the same as your brother's but I can't recall the name (somehow related to the dry eye) the third diagnosis is corneal edema which is inherited and run in families, I believe 4% of the USA population has it. It was only lubricating eye drops recommended and to see an optometrist in two months for my corneal edema.
I went to my GP and he prescribed the drops. It was easy. I was all the time under impression that my only problem is dry eyes. I went again to another GP and he explained to me that the corneal edema is a genetic condition and not related to UV light. Both GP s refused to examine my eyes.
I started to search the internet and found out that my treatment should be Bausch and Lomb Muro 128 eye drops. But there is a worldwide shortage of the Muro 128. I did find an optometrist a supplier but I have to go and get the eye examination by them and they will sell the product for 55 dollars. My GP can't give me the script as actually no script is required but according to the optometrist it is not legal to sell the eye drops without examination. The eye Hospital didn't even noted Muro 128. And I didn't know that I have corneal edema. No chemist or optometrist in Sydney can get Muro 128. Interesting
Treatment options vary from medical management with topical lubrication, topical antibiotics, cycloplegia, eye patching, bandage contact lenses, oral tetracycline (doxycycline), hypertonic saline ointments [6,7] to surgical treatment modalities such as anterior stromal puncture, alcohol delamination, excimer laser therapy, phototherapeutic keratectomy (PTK), diamond burr polishing, and neodymium-doped yttrium aluminum garnet (Nd-YAG laser) [5,8,9]. Sodium chloride (NaCl) 5% ointment is a hypertonic salt solution used to reduce corneal edema by drawing water out of the cornea, which, in turn, evaporates through the tear film. Currently, it is the second-line option after lubrication in order to treat and prevent recurrences of RCES [9]. It is thought that the sudden reduction in corneal edema could be damaging to the corneal endothelium. With a view to assessing the safety and efficacy of NaCl 5% ointment use in the treatment and prevention of RCES reappearance, we conducted a prospective assessment of our practice.
Wow, back and forth for you it sounds like. One doc took my brother off of the doxy and then his eyes were really bad and red and inflamed and he went back to the primary and he put him back on and now all fine, he uses drops too but I'm not sure what kind. Always some kind of hoops to jump through.
There's been a shortage of eligard and lupron so dad is on triptorelen for his hormone shot now, what's with all of the shortages.
I am on Firmagon monthly injections (degarelix) since 2018 and it worked fine for me, no detectable Mets yet on any scan. (PSMA, bone, ct, FDG pet scan.) Only CRPC in my prostate what is bad because I had SBRT radiation therapy for my prostate only and the cancer is back after a year after radiation.
Yikes that is unfortunate, were you doing hormone shots during radiation? My brother had 45 radiation treatments and hormone shots at the same time , gleason 10. Two years undetectable psa.
I was diagnosed in 2018 as Polymetastic with multiple Mets in my spine etc. I was always on Firmagon monthly injections and I also had early chemotherapy 6 cycles of Docetaxel. My nadir PSA was 0.12 and was slowly rising up to 1.25 when I had a PSMA pet CT scan showed no Mets only CRPC SUV max value of 14 and at PSA value of 1.4 I irradiated my prostate about a year ago (November 2022).
Six months after radiation my PSA dropped to 0.25 and started to rise. At PSA 1.8 I added Bicalutamide 50mg. My last PSA was 2.3. I will have my PSA test again soon.
No, I stayed on Firmagon monthly injections only and didn't add another hormonal treatment until the PSA raised to 1.8 when I added Bicalutamide 50mg per day, maybe I made a mistake not to start Bicalutamide at PSA 1.1 after my latest PSMA pet CT scan. Alternatively Abiraterone or Enzalutamide. I am gambling that maybe Bicalutamide alone will slow down the rapidly rising PSA of the aggressive CRPC in my prostate.
Professor Emmett said when interpreting my last PSMA pet CT scan at PSA 1.1, that my only on the PSMA pet CT scan visible cancer is in my prostate with SUV max value of 6.5 and that is a cancer strain which survived the SBRT radiation 38 Gy in 5 fraction in my prostate. I assume that the cancer is CRPC and it is a very aggressive strain.
The RO who Radiated my prostate believes that I must have cancer elsewhere (most probably in my pelvic lymph nodes) but that cancer is not visible on the PSMA pet and investigational CT scan with contrast yet. I didn't want to irradiate my pelvic lymph nodes because I am not curable and that would kill my bone marrow and T lymphocytes. I would do the radiation only if it is visible on any scan.
My RO doesn't believe that I have any cancer left in my prostate. He believes that the SUV max value of 6.5 on the PSMA pet scan is not coming from an aggressive CRPC cancer In my prostate because he killed the cancer with his SBRT radiation therapy 38Gy. I am neither professor Emmett nor an SBRT radiation oncologist therefore I don't know. I just know that we don't know what is going on. My RO didn't want to order a prostate biopsy, but he believes that even after surgical removal of my prostate they wouldn't find a cancer in my prostate because he did the prostate radiation. My MO also don't want to order a prostate biopsy because he believes that it is not relevant. I asked him if the Gleason score could be now 9 or 10? I would like to have a biopsy and I would be happy if they could order a genetic analysis of the biopsy samples (tissue biopsy) and everything else what they should order, but they are not interested.
I was told that the PSMA pet CT scan is an easy scan especially if they are performed by a latest Siemens machine and the machines are much faster now then before. The only question is is the cancer PSMA avid or not. My cancer is now CRPC and it is a big question if it is expressing PSMA now at this late stage. They want me to do the FDG pet CT scan also. Too many scans for my taste. They are not expensive here in Australia. The FDG pet scan cost 600 A$ while the PSMA pet CT scan cost 700 A$ and the parametric MRI cost 500 dollars and they are not covered by Medicare at my late stage. I saved up for the scans but it looks that the RO always find some excuse to disregard the results. My PIRADS score was 5 and my RO didn't budge. They don't want to order a biopsy nor they want to send the samples to genetic analysis etc. I believe that they just want me to test a toxicity of the new Astra Zeneca PARP inhibitor in a phase I clinical trial. I am not happy with this approach. I don't want to be a toxicity trial participant at this early stage of my prostate cancer. I have other options left before participating in a phase I clinical trial for new less toxic Astra Zeneca parp inhibitor.
Ok, the CT with contrast part was fully covered by our Medicare. I only had to pay for the PSMA pet scan part. The real cost is probably not 70k but they are motivating you to get insurance. They could even say that it cost you a million dollar just to make it obvious that you should be insured otherwise you are in big financial difficulties.
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He said, "I'm sorry to tell you this but he has a large mass, I also still dont think it is from his prostate cancer." Things moved quickly from there, dexamethasone was called in and we picked it up on our way home. I was in complete shock. He had an MRI 2 days later and a referral to a neurosurgeon, they had a tumor board meeting with 8 neuros, only 1 of 8 thought it was from his cancer. They cant do surgery, he's 90. They did whole brain radiation the next week, 10 rounds. The radiology reports go back and forth, more likely a meningioma with direct leptomeningeal enhancement but could be from prostate cancer. They told us that they wanted to shrink or stop the tumor from growing and slow down the lepto enhancement to stop the headaches. They dont want to put him through lumbar puncture because it can take 3 to get a diagnoses and that would not change treatment. So far, if it was from the cancer, he has outlived it as they said could be 4 weeks to 4 months and its been 6 months. His last MRI showed stable tumor, unchanged in size but more lepto enhancement which the report states is either disease progression OR inflammatory changes post radiation, ugh. Dad is doing well. His appetite is good, he gets around good he only has a headache maybe 2 times a month. He wants to still get his normal xtandi and lupron doses and live one day at a time, he does not want hospice.
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