I haven’t posted since last Christmas and we were in such a rough space I just needed a break for a while, I re- downloaded my app today to find kind messages and posts of people checking on our family. I feel loved and also really awful to leave people thinking the worst...Joe is a fighter and continues to fight.at last post I believe he was finishing up the checkmate 650 trial- Opdivo and Yervoy. He did all 4 infusions to no avail. PSA rose fast and when it hit the 300’s with evidence of bone spread he started taxotere again. Since February he has been on taxotere, carboplatin and cabazitaxel, and various combinations and dosages of all three. Despite some initial responses his PSA was 330 at chemo last Thursday, he is in immense pain. Last PET showed no lymph node or organ involvement but bone activity from the base of his skull to his thighs- in other words- everywhere the PET covers. During all of this he contracted cryptococcus- no fun, miserable fungal infection that stopped chemo for several months in there due to ongoing fevers. It has been behaving itself but seems to be coming back as well. He is now done with chemo as it results in a quick PSA drop but by the time of next chemo treatment he is right back, or higher, than he was before. He’s currently chemo clearing his body so that he can do another trial in St Louis at the Siteman Center. This is a Phase 1 CAR-T dose escalation trial that will require inpatient hospitalization and I’m pretty much scared to death. His veins aren’t even accessible anymore so o don’t know how they will do the apheresis aspect on him. I guess just his port? Ugh. Anyway, he’s still fighting, ass kicking cancer and we’ve now had over three years when his prognosis was closer to 3 months. So in for all of you given crap prognosis- keep the faith friends. Dr’s aren’t psychic. Again I apologize for my absence and promise to not disappear again- app is downloaded and notifications are on! I realized that with all the support I have gotten here I have a responsibility to provide that same support to others and I want to do that. Thank you all! Katy (as always updating for Joe lol).
We’re still here! : I haven’t posted... - Advanced Prostate...
We’re still here!
Good luck in the future. I know how disheartening it is to try treatments that are hard on the body and mind but give little relief. Keep up the fight and find joy in every day.
Thank you! Cancer fighting and joy finding are two things my husband is pretty good at!! I truly have come to believe that attitude plays such a large part in healing...
We r happy you resurfaced!!! Stay in touch and keep up the fight
Thank you!
Thanks for checking back. CAR-T is certainly high risk, but the potential benefit is high as well. Please, let us know how it goes.
Will do. I know that it requires a week of inpatient hospitalization for monitoring. I am not a fan of this as I wasn’t of checkmate 650 (for my husband at least as he didn’t have any of the mutations that would have indicated any likelihood of success. It really just put him in the hospital a few times. I can’t find much info on prostate cancer and CAR-T and our oncologist has not really mentioned any risks... would love to see any data you have or hear from anyone else who has had this done. Not sure the name of this particular trial but it is sponsored by Tmunity...
Here's the clinical trial description:
clinicaltrials.gov/ct2/show...
There are two types of CAR-T therapies for prostate cancer now in clinical trials. This one targets the PSMA protein on the cancer cell surface. The other one targets prostate cancer stem cells. As you know, CAR-T therapy involves re-engineering one's own T-cells using CRISPR technology so that they do not recognize the cancer cells as "self." The risk is that the amped-up T cells will recognize "self" cells as foreign invaders. This is why he has to be watched so carefully. At the first sign of autoimmune attack, he has to be treated with steroids to stop it (similar to graft vs host prevention therapy). It's a Phase 1 trial - they are trying to figure out the delicate balance between effective dose and toxic dose.
A CAR-T trial for multiple myeloma was recently put on hold after a patient who received the highest dose died following a cytokine storm. Interestingly, that patient also had a complete response to his multiple myeloma, and the autoimmune attack occurred some time afterward. However, some patients who received a lower dose also had a complete response and remained healthy. High risk, high reward.
When you mentioned that they use steroids to stop the autoimmune attack it made me think about my wife's Lupus therapy. She uses a self injectable called Benlysta which tamps her immune system down for a week without the harsh side effects of Prednisone. I wonder if the researchers have considered it? It's pricey though, nearly $3,500 per injection.
Hello JoeKaty, I returned home yesterday afternoon from a Tmunity's CAR T-Cell Phase 1 Dose Escalation Clinical Trial infusion (Philadelphia's Jefferson University Hospital). I stayed in the hospital for a total of seven days. Originally, they were going to keep me for nine days but I started doing well enough to warrant an earlier release. It was rough going but nothing too serious: fever (104 F), uncontrollable shivering, pain, vomiting, and no appetite but the doctors, nurses, and research coordinators assured me this is indicative that the infused T-cells (Ninja cells) were working. My "cohort" involve escalation of dosage. Upon admission to the hospital, the doctor implanted a three lumen picc line used for the infusion, fluids (saline), and meds. Again, a relatively quick and painless procedure. Initially, I was given 30% of the dosage about 80 million new and improved T-cells. The plan was to infuse the rest (70% or about 220 million Ninja cells) three days later. Due to my extended fever they decided to wait another day until the infusion. That second infusion was decidedly less severe and shorter but I still went through all the above reactions. The following day I was feeling well enough to eat lightly, get out of bed, and walk the corridor. As a clinical trial patient you will be placed in the bone marrow transplant unit of a hospital for the infusion due to the similarities of reactions. The staff and facilities are expert in recognizing the symptoms and treating you. My entire Jefferson medical staff, especially the nurses, were fantastic. (Katy, during this hospitalization, you may not be permitted to visit.) By the way, you should not worry about the removal of his T-cells (Lymphocyte aphaeresis). More than likely, the morning of the aphaeresis they will install a catheter in his neck a simple, painless, and quick procedure. From this catheter they will gather his T-cells and some plasma–a simple, painless, much less quick– about three hours procedure. Once that is done the catheter is removed and he is set to go home. Good luck to you both!
Thank you so much for sharing your experience! That is the trial that Joe is doing!!! Very helpful, especially for a phase 1- to have an insider perspective. We’ll be doing it in St Louis probably in January. I am upset to hear I won’t be able to be in the hospital with him. He has never spent the night in the hospital without me. I understand the visitor repatriations- I work in a hospital myself- but it’s always different when you’re on the other side of it. Really appreciate your experience shared and wish you the best! Please keep us updated on your progress!!!
My husband (age 54) has this terrible disease too. Diagnosed in Aug 2017, we've been through it all. My husband has veins that collapsed easily. He had a Hickman port put in when he had Provenge. He was very pleased with it. It worked out well. I learned to flush and clean the port every day. That port was removed after that treatment. But more recently, he got a permanent port which does not need daily flushing. It has made all his tests and treatments much easier.
I can't believe the things we can get used to. The hardest thing is not being together for treatments and troubles. My husband was in the hospital for 5 days for a bleeding issue in May. It was so scary to not be able to be there and not know when he'd come home.
I wish you both good luck with the treatments.
Very good that he’s home .. ❤️
Yes, Joe has had a port since he was diagnosed in August 2017! They used to be able to see veins as well but they are all shot now - he was still able to have them used when he had Provenge though it was a challenge every time. He was also hospitalized at diagnoses with bleeding issues and it was as terrifying/traumatizing. It is amazing the things we can get used to. I will say, on the positive side, we have remarkably resilient children - cancer will do that to a family!
My very best wishes to you both.
Perhaps you might also consider complementary supplements that are relatively inexpensive and non toxic.
If you click on my avatar you’ll be able to read my bio and some posts I started.
You might also be interested in this PUB MED case report. It's about a terminal pancreatic cancer patient who had to stop his chemo due to treatment intolerance and started taking two supplements instead.
Unresectable Pancreatic Adenocarcinoma: Eight Years Later:
ncbi.nlm.nih.gov/pmc/articl...
I know that article is about pancreatic cancer and not prostate cancer, but if there's something that "might" be able to help with that dreadful disease then it just might be worth trying.
One of the supplements that patient took was Essiac which is an old herbal remedy that's been around for almost a hundred years.
I'm the first to admit that there's no scientific evidence to show that Essiac is effective, but I've been taking Essiac together with CBD oil for almost 4 years and am very happy with my results so far.
Best wishes
Dave
Wishing you both peace and healing 🥰
What beautiful smiles! Good luck with your new treatments. Keep us posted and will keep you in our prayers.
Good luck to both of you warriors.
Great luck to you - you are both strong fighters.
My onco told me when I started chemo in mid 2018 that it probably would not work, and from my reading of cases online, I had no faith in chemo, and sure enough it did nothing for me and Psa went from 12 to 50 after 5 doses. I had told my onco to transfer me to Lu177 treatment as soon as we both knew chemo wasn't working. That happened, and I began Lu177 in November 2018, and had 4 doses up to May 2019, and a then a good result in follow up scan in August 2019. Psa went from 25 before Lu177 to 0.32 at exactly 1 year later but much of that drop was due to Xtandi which seemed to slow down Pca growth for about 15 months.
This year, Xtandi began to have no effect just like Cosadex and Zytiga failed in addition to continuous ADT, and Psa went to 30 in July 2020 when I had 5th dose of Lu177. Before a 6th dose of Lu177 in October, Psa was down to 8.7 and is continuing down.
On 13 Nov, I get to discuss progress after having a 9th PsMa scan 2 weeks ago. I have no idea what the doc will tell me. But Lu177 takes time to work, and a man can have 7 doses without much fear of side effects but I may need 10 doses with some more in 2021.
After I have maximum number of doses, there's a risk of leukemia from repeated but accumulated small doses of Lu177. I had a negative FDG PET scan, so in theory all my Pca should be killed by Lu177, but the Lu177 does not seem to treat very small mets and I may have thousands of those in my bones which cannot be seen by any scans until they grow big enough to me seen, so, I have no idea how long I can stay alive by keeping Psa below 20 year after year. But while Psa is low, and met sizes are small, I have wonderful health, after a horrid diagnosis in 2009 with a Gleason 9, inoperable, Psa 6, at age 62.
I cycle 200km+ a week and stay busy. So despite being chemically castrated, I am as fit as many other men of 73 who have no trouble with Pca, and have full amount of testosterone.
I may be lucky here in city of Canberra in Australia, and only 300km away from a clinic giving Lu177 in Sydney. I met men who had flown from USA and NZ to Australia to get Lu177.
Covid C19 is making travel difficult.
Best regards from wonderful springtime Canberra,
Patrick Turner.
Thank you so much for sharing.
While I've been fighting APC for nearly five years, my wife has been fighting a composite lymphoma (both Hodgkin and non-Hodgkin) for the last two years. After failure of her stem cell transplant, she had CAR-T at Dana Farber/Brigham in Boston. Her cytokine storm hit on day 8 just as they were getting ready to discharge her. The neurotoxicity effects hit on day 12 and were the most concerning (to me) as she was non-responsive for 2-3 days. Over the next ten days, she gradually regained her speech, motor control, and memory. They never gave her steroids as they were afraid they would "blunt the CAR". She was confused and unstable on her feet after discharge (just as COVID-19 hit Boston) for the next few weeks, but her 3 and 6 month PET scans were totally clear and she has totally recovered from the CAR-T. I pray that a solid tumor version of the CAR-T works and will be following Joe's progress. Hugs!
Best of luck to you. Please keep us updated. All of this information helps so many people going forward to make decisions. Keeping you in our prayers!
I am so happy to hear that Joe is still with us and continuing the fight! When we last messaged, you mentioned your fear that the next dose of the experimental treatment might kill him, and then during your absence I and others assumed the worse. But by all means if you need to take a step back from the forum please do! Your story serves as a reminder that assumptions are not reality.
I'd also like to give special thanks to Joe for taking part in these trials. My cancer has progressed to neuroendocrine, and has re-appeared after chemo earlier this year. I believe one option that has been proposed for me is Opdivo + Yervoy, so I can see the direct line from Joe's participation in the trial to potentially helping me with my fight. Thank you Joe for helping expand the options I available to me.
I'm also becoming increasingly interested in clinical trials myself, as my doctors have reached the "think outside the box stage" with my neuroendocrine cancer. My observation about trials that should give both of you hope is that some truly miraculous stories have come out of clinical trials. If I recall correctly, both Hidden and Hidden have taken part in clinical trials where the trials themselves were deemed unsuccessful, but they both have had exceptional responses as a result of being in the trial. My guess is that some study drugs are very effective for a select few, but cause enough troubles for other patients that they are deemed more likely to harm than help if given to a patient at random.
My MO also mentioned one clinical trial where the first test subject got a remarkable response, and the next 200+ patients had no response. His suggest was to be the first in line for any trial 
I am amazed at all Joe has been through yet he continues to fight. He definitely strikes me as the type of guy who wants to die "with chemo in his veins". I expect this must be very difficult for you, especially now with Covid restrictions, but he's not just helping himself, his story is helping others here. More thanks to both of you!
Thank you. The Opdivo/Yervoy combination has shown a lot of success in people with specific mutations. I wish you the best with them! I am also very proud to have a husband who will participate in every trial or treatment available because his desire to live is so incredibly strong. I don’t (as seen in past posts) always love his choices but I respect them and I do believe they will all end up having served a higher good. Good health and best wishes to you!
Seems some APC ‘S are capricious busybodies while others simply lazy grinders. Something coming out of your loving hubby’s tribulations will hopefully contribute to the solution wreaking havoc on him...we all thrill in the hopes he’ll become patient one in a new line of therapies.
Amazing fight you both exert...I’m in awe of your’s and other tough long hauler’s contributions.
Thank you for sharing. My husband and I are new to this sight but not to PC. I had never heard of Lu177 but am interested. This sight helps. My husband has been on Eligard and now Xtandi.
So sorry to hear the monster is progressing so fast, I feel for Joe, I too have wrestled with the fungal issues. No fun at all. Hoping for the best 🙏🙏🙏🙏
I’m sorry for you- the fungal issue is the worst!!! It took two ER visits, two months of unexplained fevers, and finally a visit to an excellent infectious disease physician to find an answer and a solution that works- when he chooses to take his medication. 
Wishing the best for you too. It is nice to be back.
Gods speed to you both in this toil . 🙏
Keep rolling Joe & Katy ..I’m so grateful that like Katy my wife has stuck with me thru the hell . God bless you youngsters fighting this ol man’s disease together .
God bless.
So sorry to hear what you guys are going through. Prayers that the coming clinical trial will do the trick. Joe is definitely a fighter!
What an amazing team you both are, l know your pain nearly 30 years ago my husband got pancreatic cancer. Its hard for both of you, and would you believe it my amazing husband still here and supporting me through my OC journey not quite the same were both 30 year older .But it helps knowing he's here for me,my
Motto is never give up, try whatever you can
If it helps and stay positive. There is light at the
end of the tunnel, lm just trying to find my light
At the moment, but staying fit & positive helps.
Your both absolutely amazing l 🙏 that things will soon get better for you both keep fighting
Its the only way and your not on your own.
Love & vitual hugs Sheila F xxx
youtube.com/watch?v=yBC0Qxg...
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 11/10/2020 7:00 PM EST
I saw your post today and I am sorry it’s still rough❤️ But dang Joe you are my Hero too
Only God knows when it time to go home🙏
Hope your kids are doing ok . Katy you are in my thoughts and prayers. Sharon
Hi Katy and Joe,
So good to hear from you. I wish you and your family a good holiday and pray Joe will continue to stay strong. 🙏
Sending positive vibes your way. Keep going!
Thanks so much for the update, Katy! Glad to hear that Joe is still fighting and the positive news about how much longer he has had than the Dr's predicted - it's always good to be reminded that they aren't -as you say! - psychic Sending a lot of prayers your way that the CAR-T will be the thing that works for him - there is a lot a positive buzz about it. Big virtual HUGS to you both!
In solidarity,
Sunlight
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