Since my first treatment (April 26th) with lu 177 my PSA has gone from 227 to 600 to (in just the past two weeks) 932. My last scans showed more widespread Mets to bones all over my body.
My latest (yesterday) bloodwork has my ANC number back to 1.7–This number means I am eligible to take another treatment in the trial. My oncologist back in Miami has basically said another treatment is probably going to kill me. That being from her limited experience with the lu 177. My Hemoglobin and a lot of my other cell counts are still very low, my platelets are very low. Omaha is a long way from home and I am longing to be home. That said I’d stay another year or two if I was getting good results at all from the treatment. I am being encouraged to do one more treatment, but I can’t see any intelligent reason to expect a different outcome from a second treatment than I got from the first. If anyone out there sees things differently than this and can explain why they would, I would like to hear Why? I still feel so good most days, was just a little fatigue if I overdo myself and a little shortness of breath. Most people have such a hard time believing that I have cancer, let alone stage four cancer. Doing another treatment I think will fix that. Going through the nausea the weakness and the shortness of breath (again) I am fairly sure it will take a toll on my body and my appearance. Life is Beautiful.
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greatjohn
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I know that my bone marrow has been compromised and therefore my blood numbers are so bad and she has even use the term leukemia. But as to whether or not my prostate cancer has invaded my marrow, I would be surprised it was not until just just very very recently that I was able to get any cancer showing up in my blood.
It seems to me that the issue with your blood numbers is more important than whether or not another infusion of LU-177 would slow or stop your progression. I think that would be need to be resolved first.
I remember you were saying in an earlier post that they didn't give you anything for your low ANC count. Just wondering whether you are getting the supportive care you need in this cinical trial or whether you'd be better off seeking treatment outside of it. That's just something I'm wondering about, I don't know enough about the details of your clinical trial, just questioning that.
Wishing you the best in whatever decision you make.
John,I feel so bad and wish I have anything useful to say unfortunately. I remember a year ago you changed doctors and you wrote this in one of your posts:
“He then proceeded to use terms like Oligomatastases, remission, and even, dare I repeat? “cure”. He even spoke of (in a couple of years) possibly being able to stop Lupron (castration) if this treatment gets my PSA down to undetectable as he feels it has a chance of doing.”
I don’t understand how things got turned around like that , from you talking about a cure or your RO talking about a cure to this.
I HOPE soon, the second treatment gives you more success, John
I like it when I have something written down like that and it can be gone back to an reread. It shows what the actual reality wise at that time. Thanks so much for that quote! I do go back over my post occasionally to check out my journey.
Etoposide has pretty nasty side effects and is not very effective against PCa. Not used much these days. Early BAT trials were combined with it in the hope that it's inducement of double strand DNA breaks would potentiate BAT. They abandoned that theory due to side effects.
I don't know about it at all, sorry. Etoposide was a chemo agent used for PCa before the taxanes such as docetaxel became available. It wasn't much chop, but the only thing available then.
So sorry to hear of your progress. Sending strength to you, and hoping.
Wow, I always wonder if such large jumps in PSA are truly representative of tumor burden, or due in part to each cell simply putting out more PSA, because cancer that doubles in about two weeks is truly scary (I've seen my neuroendocrine markers double in about three weeks IIRC).
As much as I try to be optimistic and have hope, I'm with your MO in Miami: another treatment is sure to beat down your marrow, and there's no great reason to expect it will work any better on the cancer (unless they made some mistake in the first infusion, or some concrete reason to believe this time will be different).
As I think about this more, you had a spectacularly bad experience with the first infusion. If instead you PSA had gone up 20% and scans showed only modest "growth", then IMHO it would make more sense to say the first treatment caused a flare where the cancer appears to be growing, but is actually inflamed and dying. Flares are real, but they're generally modest and short term (4-6 weeks). The usual disclaimers about I'm not a doctor go here, though I did self-prescribe leftover antibiotics for myself recently
I wish you the best of luck, and am happy to hear that you at least feel good, despite what the tests might say.
How do you process this info and then make a decision? There's so many things to take into account and I wish I had something to offer but the truth is I am the student here. I am rooting for you and will continue to keep you in my prayers and thoughts, only the good ones.
Dang! So sorry to hear about the news as ultimately it’s your choice in the journey which we will all respect. My prayers to stay strong and enjoy QOL.
Great John, Sorry for the lack luster results from your first RLT. I pray you will make the best decision with all the data and your MOs working together to weigh the pros and cons. Have your MOs thought about ordering you an FDG scan to see if the tumors that light up on the PSMA scan are either discordant or concordant with the FDG scan? That might give clues as to what is happening on a cellular level. Keep the faith Great One, we are all praying for your successful treatment and recovery of your blood counts🖖
I would try to correlate that statistic with which of them were FDG-discordant, but if FDG scans were not done, then we can’t do that. But my takeaway from the thoughts here seems to argue for your idea in combo with a discordance association.
Me too! As a non medical provider, I would say get home, get things wrapped up, and enjoy the hemoglobin. The healthiest you can be now, will be the best QOL
What does your doc in Omaha say, does he think preceeding with treatment would, or could be life threatening. I am rooting for you, I to, have had high hopes for lu 177 working for me soon as well. Don't lose the faith, things can turn as easily as they did the less than desired direction.
I am no doctor so, I can give you no medical advice that matters. I can say that you need to hear from doctor's who know, not just in the trial but other oncologists familiar with this treatment. I know you need to pay attention to what your body is telling you and what your heart is telling you.
It is always your decision, so you are playing the odds based on past clinical trial results, how you feel, and what your blood tests are telling you is going on in your body. Ultimately, YOU have to believe that the second treatment is the right way to go or that stopping treatment is the way to go.
Going into remission and having more time with family and people and pets you love is a wonderful possibility and so is returning home now to seek another option or to decide to just live the time you have.
It is a heartbreaking choice but if you sit still in a calm and beautiful place and just breathe (4x4) for a while and enjoy that moment, I think the haze and chaos will clear from your mind and you will know.
May you find the path that is right for you. We are always here for you.
Hi John, the same progression of disease in two men can show different PSA numbers as some people’s cancer cells produce a lot of PSA. I would say don’t worry solely on looking at the PSA number.
I think the most important aspect here is what are your latest blood levels?
Mainly Haemoglobin, WBC, platelets etc.
If there is a possibility these numbers are so low and impossible to recover after a second cycle. U shd May be consider some other treatment that is not so hard on the marrow. If your doc assures your numbers can renain stable or not go dangerously low, then you may want to take a decision based on that.
Very best wishes Great John. I think the above are some of the most helpful and heart felt replies to any question asked here, which shows how much you are loved. Everyone is pulling for you and your medical team. Tc. God bless. Graham
Sounds like the shape that I was in 3 years ago. They put me in the hospital for 3 days and gave me 4 blood transfusions ( was going to do 6). You wonder why they take your blood pressure every hour, making sure your alive. My PSA was 800 and the cancer was everywhere, bones, organs, Lymph nodes etc. The doctors couldn't believe that I walked into the ER. Alkaline Phosphate number was 3000. Should be around 50? That's the number that shows what your bone marrow and liver are doing to produce blood. Ended up on Zytiga and prednisone plus lots of calcium supplements. Lupron, many B-12 shots and Zometta is my regular care. Zytiga daily 2 -500 mg plus the prednisone 2 times a day. Hope some this information helps you. Sending some prayers your way.
PSA is undetectable. Blood pressure and sugar are up a little. Nothing to worry about. Blood count (red cell?) is a little low but its been that way for 3 years. Started on iron pills to get the numbers better but we'll see. Getting a zometa infusion today for the bones and had a Lupron shot last week. B-12 shots every time I go in. Hope that this info helps you.
So my two cents. You are obviously a fighter! I say fight! Please G-d , it WILL work! NO REGRETS! Just be sure to go right back to your beloved Florida in case it doesn’t work. Plan your beautiful personal ending. Hopefully, you will survive on this earth for years to come. If not, you will be going to some place even greater! There are no bad choices, keep that in mind.
John, I’m so sorry this trial hasn’t helped you. It takes courage to do a trial (I know because my husband was in a phase 2 trial) so I thank you for doing that. I just wish you had better results from it. Just living with prostate cancer and dealing with ADT and all the other treatment you men go through takes courage enough. I’ve followed your posts and was hoping and praying that this would work for you. Sending positive thoughts your way. Take care.
John I don't know what to say, everything I can think of everyone else has said. I do know that you are very indepth and knowledgeable on your prognosis and in the long run you will make the decision that is right for you. Wish you all the best and would like to let you know you are in our prayers.
Greatjohn, I'm so sorry you are going through the wringer, so to speak!It seems that your concern that another treatment may kill you, is based on your red blood counts being low, and another treatment may drop that too low.
My sister, with another cancer, and another (chemo) treatment, had that issue. When her counts got too low, they didn't just let her die, they gave her transfusions, as linclonj8 reported above. She pulled through and now 8 years later, continues to have clear scans, much to the surprise, and delight of her doctors.
Seems that may be something to discuss with your doctor.
I am on pins and needles waiting to hear what your decision is and what you hear from Dr. Luke in Omaha! Thank you for sharing so much of your experience!
Reading your post for the third or fourth time, I was struck by your statement: "I am being encouraged to do one more treatment, but I can’t see any intelligent reason to expect a different outcome from a second treatment than I got from the first."
I wonder some times if we can really tell the cause and effect, could it be that your PSA would have climbed even further if you hadn't had the treatment? I have heard anecdotal reports of PSA flare especially after the first treatment that could be caused by the cells dying and releasing PSA into your blood. I hope that you are asking your doc that question today. I have also heard and read that the first treatment causes the most side effects because it's killing the most cells, and that also causes bone pain in those with bone mets. I know that none of this probably helps you with the decision. We want to keep you well and posting!
Personally, I had some malaise after my first 177Lu treatment but my disease is almost all lymph nodes. I had less after each treatment. I also just reached 1 year with an undetectable PSA after 5 rounds (in Germany).
thanks so much for your kind reply. Just an hour ago I had a meeting with him and (as of now) I am hanging around Omaha for 3 more weeks to have another bone scan to see if there has been any improvement. I'm just curious how long a "flare up" can last. I'm 6 weeks out from the first treatment....and this was a BIG flare up as well. I'm still guardedly optimistic as I have heard from so many people like your self...who have gotten great results. Mine appears to be primarily bone...and this is making the difference, I fear.John
You have so many followers here that are cheering you on, surrounding you in prayer and look forward to your updates. Good luck greatjohn. Your name suits you. Life is beautiful indeed.
The Lu177 therapy may not work as one would hope, but it will not make things worse. There are fewer side effects than a chemo. If the Lu177 therapy does not work, you can use an Ac225 therapy instead. This seems to be more effective against bone mets. Here is a trial by Scott Tagawa in New York:
I know you are torn between seeing this treatment thru and going home. Your heart may be in the game, but your head isn't; and often, there is so little distance between the two that they seem to be the same. This makes every setback more of an emotional huddle. Step outside the cancer for a moment and ask yourself what you really need to find peace.
John, it’s Friday night and my wife and I have just been discussing your trials. I’ve been following you for some time and I honestly don’t know that much about the alternatives you might consider in lieu of your current path. But I get a sense that you are quite strong physically and mentally. My feeling is that you should go with your gut instinct, do or die. We are all on the same path but have to, ultimately, make our own decisions. You are a good man. You've shown that on this forum. We love you and are there for you. Make the decision that is best for you. Stay strong. Love to you brother and to our fellow traveler. 😍💪🌈👍🤞👏
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