we've been in Omaha now for almost two months. I had my first Lu-177 in the end of April....fast approaching the time for my second infusion on June 22nd. HOWEVER, my platelets, my hemoglobin, WBC,RBC, and now...importantly my ANC have all decided to do the opposite of my PSA...they're dropping ! ! ! Today my ANC is down to 0.8
,,,, If it does NOT improve very quickly that alone will probably have me kicked out of the trial. I worked so hard...and jumped through so many hoops to get into this trial...to get here to Omaha...I made it! Now I could be really depressed about what looks like will be happening...BUT instead I am choosing to realize I did ALL I could do. I even ate grilled beef liver (hate it) in hopes of it raising my hemoglobin or raising anything. I did all I could do...I "fought the good fight"....(and don't take this as me giving up) but I am relaxed now. I realize that there is nothing I can do to fix things it's in the hands of "fate" "God"....Destiny. I am going home to Ft. Lauderdale on Thursday to get 1000 kisses from my puppy Sparky and to coordinate some loose ends there and then heading right back to Omaha...in hopes of still being in the trial and getting at least ONE MORE infusion.
If I am released .....we'll be packing up the car about 4 months earlier than we had planned and heading back down south. I am on Antibiotics to prevent me (my counts are so low) from getting infections....I'm wearing my mask(again) everywhere...and I have been told not to cut myself...bang myself...bump myself....I could have internal bleeding. (My platelets are down to 16,000) Still enjoying every day...*pic is of me out at a beautiful lake near where we are staying called Lake Zorinsky. It was a gorgeous (not too hot or humid) Omaha day!
**that's my story and I'm sticking with it.
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greatjohn
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I knew it was about time for an update. I hated to not have BETTER update material....LOL. But I have hopes that even one of the Lu-177 injections might be enough to ease me down the road a big longer!
Hate your predicament, love your attitude. Whats getting depressed going to do but rob us of what time we have left. Sounds like you need to be a bubble boy best avoid injury. Be safe and I'll send good energy your way via hopes and prayers.
Happy to see an update from you, freaked out at your platelet numbers. I talked about my platelet counts with the NP when mine were dropping a few months ago. She said below 50K they wouldn't initiate treatment, and below 20K they'd do a platelet infusion. Have they offered anything to help boost them up?
Also, how are your monocytes? Whenever my ANC was low but my monocytes were rising, my oncologist (who is also a hematologist) said that was a sign that other blood counts were rising soon, as the monocytes were always the first to recover.
Love your attitude and making the most of each day! Hang in there, this world is a better place with you in it.
Well you’re looking good …. Working that Habana Tee ,,, 😂😂 I’m sending positive vibes out your way .. warrior … for you , both of you. Hoping you can get that blood work to recover in time for the next step. Sending a warm fuzzy hugs too.
Thanks for the update, hope things improve with your counts.
Are they offering to give you a shot to boost your blood counts? This is often needed with chemotherapy before the next infusion can be given so it seems like that should be offered.
Hi Gregg,in a "trial" setting they have very specific "do's" and "don'ts" I have had a transfusion which helped with my hemoglobin. I'm not sure if there's anything to raise the ANC number which could be my "deal breaker". I'm doing one more blood test before they make decisions or try other paths.
I had neulasta (advertised all over TV) during one of my chemos, shot my ANC into the double digits by the last cycle, apparently at the expense of my other blood counts, but that could be bad anecdotal evidence.
Honest question...can they not give you iron infusions to "fix" your CBC results? Or platelets? Would that knock you out of the trial? If I could, I'd donate my extra platelets to you in a heart beat, win win! I have the ⬆️ 🩸opposite problem. If only it were that simple!
Keeping you and yours in my thoughts and prayers...🐾🕊️🙏♥️🕯️
Hi John, sorry to hear that your counts are low. My counts dropped after the first and second treatments but it took about 8-9 weeks to return to a more normal count. A woman at a health food store recommended Blood Builder Supplements by MegaFoods. She get’s anemic every month after her period and she said it works fast. I think it helped my counts improve. Hoping for a good outcome for you.
In the trial I am not allowed to find these things out. However through my oncologist I will be having psa done shortly. Hoping to see miracles on that number🥰
They don't give you the PSA results? How about scan results? My husband was just tested for a clinical trial and we got so many different test results, but not the PSA....hmmmm. As though we could cause it to go up or down by "willing" it to do it.
You look great!!! You got this! Be careful on your trip…maybe wrap yourself in bubble wrap! But I’m confident you’ll be able to continue! Lots of love to you! 🙏🏻❤️
Stay the course, my friend. Lots of people here are praying and rooting for you. You have shared your story so freely that after 3 years here, I feel I know you.
Looking good, John. Been worried about you. I’m sure Sparky will be thrilled to see you. Pets are such a great comfort. Praying that your labs improve.
I should have said that better..."historically my PSA dropping" I haven't had it checked (by my oncologist) to see how I am actually doing. I'm hoping for a good to GREAT improvement just from the one treatment. The trial does check PSA , but doesn't reveal it to the doctors running the trial...or to me. I'll know in about 10 days or so what my PSA is now. Last time before the trial it was 217....and had been doubling monthly for a few months.
Thank you for keeping us posted. I hope you keep improving so you can get Em All! Perhaps seeing Sparky will do the trick. Best wishes for improvement of your Neutrophils and Platelets! You will succeed Great John💪
Damn. You worked so hard to get there. Thx for sharing your pain. Hope this great hang here can at least take on a little of that burden for you. Add me as another one praying for your numbers to take a big fast jump…
Great attitude. Love it. I’m worried about the platelets counts, when my dads fell to 80k and he got a biopsy done, the bleeding did not stop for long. They had given him vitamin k injections to clot the blood.
At these low levels, I’m hoping you can get a platelets infusion done asap.
And if you’re also interested in additional ways, please look into papaya leaf juice.
Praying all your numbers will be raising soon and your procedure will continue with good out come. Thank you for the update GJ, and pray there will be more.
When you know you did all you could it helps to face whats next. This shows your inner strength. Im at the same point. Tried just about everything. My rbc and platelettes went south so im out. Losing appetite for food. Thats the worst becaise i love to eat...and it showed. Keep on being grateful for each day. You are strong!
I call this a journey and I have been going over some "rough and precarious" stretches along rocky and steep paths lately.....Hoping for a smooth and level ground with beautiful vistas in my future!
Thank u for educating me I didn’t think this to had so many side effects everyone hyped it up that I got so excited for my dad but didn’t think of the side effects like all the other treatments
my side effects are common....but they are more severe than usual. It appears to be a well tolerated and good treatment from all I see (for most people)
John, Thanks for your update to all of us. Hopefully those psa numbers have dropped significantly and your platelet counts will rise. Perhaps even if it takes longer than the trial allows you’ll be able to resume the use of the Lu117 outside this trial without the various restrictions? Sorry you’re going through this. Glad you get to see that puppy of yours soon🐾
I'm praying for you. Hopefully your blood count will come back up in time to stay on trial.... adicted2cycling had a good suggestion --- Dr. Onik --- even if you stay on and complete the Omaha trial the immunSYS would likely be a good move.
Hi John, thanks for your update. Physically you are looking great and you are feeling OK. It is also an important indicator.. And your positive attitude is more than half the battle won. On the other indicators especially your platelet counts, hemoglobin, WBC, RBC, and ANC, I will be praying for all of them to be better. Rooting for you ....God be with you. BTW, just start my LU 177 session yesterday.
You are so forthright and honest with us in your sharing. It is a great credit to you and reminds us all of the importance of attitude when dealing with advanced disease. How long can you be on treatment holiday waiting for your bone marrow to recover and still stay in the study?
My son lives near Lake Zorisky and I have been there many times for a good walk or a picnic.
those specifics we have not discussed. They are waiting for one more blood test to check the progression of all of the above....at that point I'll find out what I can/can't do...if there's a "stall" period I can go into before next treatment....or if they just kick me out the door! LOL. It really is beautiful in this area where the Lake and Doctor Luke has his practise. Been TOO hot for me...and I'm from Florida! Today it's supposed to be close to 95.thanks,
I always await your reports, John, and read them with great interest. I celebrated your entering this trial (one I couldn't get in), and I hurt that your continuation is in jeopardy. Is it known that lutetium itself is the cause of your myelosuppression, or might there be other reasons? Appreciate always your smile; may a visit with Sparky do you well!
it's my understanding that the more cancer the lu-177 goes to...the more tough the side effects....that's a positive spin for this. As with any type radiation...I'd especially guess when it's injected into the blood....there will be these same type of blood issues....mine is just on the severe end.
GREATJOHN, my buddy here in Tallahassee had similar experience with bladder cancer metastatic disease. He got some transfusions and it cleared up fast. Could you receive similar results?
Well this disproves the old blues song: “Nobody loves you when you’re down and out.” In Fectau everybody loves you, including me, when your counts are down and your marrow has you almost out. Of the trial, not of life. So lady Lutetium is not the one for you.Get the long term version of the neutrophil stimulating factor, Neulasta, and transfuse sone platelets for the drive home to Sparky.
To find peace and acceptance in such disappointment is a triumph. 🐾❤️❤️
holding up fairly well. When I first got here the doctor said "I'd never guess you are 64....and definitely wouldn't guess you've got stage 4 cancer". Looks can be deceiving...gotta keep on keeping on.
I believe it can take some time for the LU-177 to start working. Are you able to get and iron (Ferritin infusion)? I’ve had three so far and Hemoglobin is coming up slowly.
Wishing you the best and keep up the great attitude!!
Great John, this is Marcellus from the Netherlands. Reading almost every day the posts in this fine community Sometimes we have the privilege to read intense and open stories like yours and for example Cleodman. Stories I (we) all learn from. Hang in there Great John. One of the wisest men in your country once said; "In the end, it's not the years in your life that count. It's the life in your years." -Abraham Lincoln. I think you are big example for us all and I thank you for that! Marcellus
I'm in a study (phase 3) "Splash" trial. all participants are Castrate resistant...and all get the "juice". It is the nature of the radiation that is directed to cancer cells directly through the blood that it causes issues (especially if you have, as I do, bone mets) with blood levels as the cancer on the bone is where the radiation ends up. My doctor says it was a good sign that blood levels are off..(it should be hitting bones hard), but I'm just a little lower than I should be...and in a "wait and see" mode.good luck!
BTW, just wondering if you watched the video about Dr. O. having a spinal and then directing his own surgery for his metastasized PCa. If not and you want a bit more insight just search >>> AKA Doctor Hope - A Miracle Cure For Cancer - Results (Part 2)
Great John, Sorry to hear of your troubles. Been rooting for you for quite a while. I'm hitting a hard spot too. Damn aPca just won't cut us a break sometimes. Best of luck to you and I'll be looking for your updates...Doug
Hi Doug...I'm still hopeful that the treatment has blasted my cancer. The doctor says what's happening is normal when there's a lot of bone being hit with radiation. My numbers are just teetering too low. I'm home for four days with my puppy and he's recharging me!hugs,
John
p.s. I hope your hard spot...softens up and becomes a good thing!
I'll be heading for Seattle to see about treatment. May get Lu-177 on trial at Seattle Cancer center. We shall see. New trial results are looking real good for post docetaxel and post Xtandi patients. Or may get radiation on current fast growing met. and save it for later. BCR so far is only one galloping met in my pelvis. Heading out for vacation and family reunion Monday for 2 weeks. Got to have a life. Life is Good.
I would also check in to lu 177 in Omaha with Dr. Luke. I believe they’re still accepting applicants to be in the trial. Good luck and enjoy the holiday.
I have found help from my bone pain (mCRPC) and who know it must be doing more to even affect pain...may prolong my life but is giving better quality. Check out Joe Tippens blog and Fb page. Not all success but significant impact for many. Maybe...it could help you...what do you have to loose.
Hi Greatjohn, I've been thinking about you and wondering how you were doing. So disappointing in results, and so impressive in your response all at the same time. Take good care of yourself. (((hugs))) to you and your family.
I'm not disappointed in results(yet) ...I won't know how I am actually doing for a while. The side effects are my only issue. Fingers crossed that the Lu-177 is going right where it needs to go and stomping on the cancer.
Hey! It is hard to believe you've gone through so many treatments and that your platelets are low, because you look absolutely great, man! It seems totally highly likely that you'll get your next infusion, and you'll be on your way back home, after doing that. When my dad was a patient of Dr. Myers, he told him: always pay attention to your body, to how you feel, that's the most important thing. Sounds like you've been having fun, eating all kinds of good food, noticing the beauty of the lake, thinking about your dog back home, keep up the great spirit, and I'll be sending my best vibes in support of continued treatment in Omaha!
I'm home in Ft. Lauderdale for 4 days with my puppy and he's given me a million kisses already and woke me every hour while we slept giving me more kisses. I feel better already! ! ! ! I'll be back Next Tuesday in Omaha.....
John my platelet count went down to the 40000 range prior to going on an ADT SOC but when I started Zytiga I had to start taking Predizone 10mg my platelets jumped to 120 and has stayed up there. It might be something to mention to your MO.
Hold on man never give up. Hope you make it to the next round. Just one question, did the LU shoot your counts down?Hope your PSA went down too. Your positive attitude will certainly help your recovery,
you are only giving positive feedback to your body and soul!!
that's what I am hoping for ....LOOOOOW PSA. If so all will be good! Home for 4 days visiting my puppy (Sparky) ....we're making love 24/7...millions of smooches...and I'm feeling better already!
Hang in there .Stay strong ! Thanks for letting us know what’s going on .🙏
That will do it! These pups heal us . Welcome home ..You are greatjohn in being a compassionate loving human being .. everyone cares for you here . You are so very honest . Tuff cookie too . This APC hell
One of your many qualities. 🙏❤️ You now see that you are well loved here. Quite a out turning for you. I saw your first post four years ago . Hard to think about the years in APC drama.
Hey John - I too have done a clinical trial and had to drop off in my case due to rising PSA and new met development kicking me out - so know it does not stipulate the end of the fight. I appreciate both your engagement in the trial for helping develop the science to crush PC for all men and for sharing your experience as we look for paths to follow to keep the dragon at bay and eventually slay the dragon. One day this beast will fall on the sword past from so many of our brothers who have helped develop the science for a cure and those brothers are heroes and that includes you. Stay strong brother!!!
You are in my prayers and thoughts. None of us knows exactly what we have to do but some have great success while others have opposite result. There's only one who knows everything and I, unfortunately, am not that guy. We do all we can and that's all that is asked. The peace is in knowing that you tried everything at your disposal. May God of your understanding continue to be with you in this journey. You have helped so many with your gracious shares and your honesty and courage. 🙏🙏. Arlis.
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