my PSA has gone up (again) and is now ALMOST 1000. It's 980.0
My platelets having dropped to 6,000.
I was prepared to argue with my oncologist about doing the chemo (Jevtana) that she has me scheduled for again on Thursday...but, alas...
there was no argument. She concurred that I need to let my body have more time to "rest" and "heal" from the treatments...and hopefully regain my bone marrow's ability to create blood....platelets, hemoglobin, white cells, red cells, etc.
so I am on "holiday" from treatment for a while...only going in twice a week for blood work and transfusions with platelets and whole blood when needed.
After I recover (hopefully) I will (as we see it now) begin treatment with Ztiga. She had had a meeting of the brains with my former oncologist and he and she agreed this might be my best move forward. I am still overwhelmed with my belief in "Ediam"~~every day is a miracle.
I shared it with her and she agreed. I am the most "unique" patient that she has to be doing so "well" for so long with such bad "numbers" and bad "Scans".
This cancer journey with Stage 4 (having lasted almost 8 years)...has been a remarkable learning experience. I've learned about cancer, treatments, my body, and people around me and how they react to my honesty. I know I have helped some people (especially on my online cancer support group) and that's made me feel really good. Life IS Beautiful NOW!
gJohn
P.S.
re. my issue with blood and clots coming out of my Penis....I have been drinking lots of red grape juice and cranberry juice and using a cloth saturated in Castor Oil with a heating pad over it(for appx one hour daily)...I use it along my penis and up my lower tummy. Where the skin is closest to the Urethra. Since starting doing this ....my bleeding went away quickly and I am not having any clots or blockages....and my urine is all crystal clear....that with such low platelets (6000) . It sounds like a crazy "folk" medicine thing...but I am realizing that castor oil is an amazing thing...and I have researched and find that both red grape juice and cranberry juice have something in them that causes the urethra to not allow infections and things to "stick to the walls"....it puts up a barrier. I'm happy to be peeing again....but I also finally have an urologist appointment coming up this next Friday. He's going to do a cystoscopy (camera up my penis) to see what's going on.
p.p.s. photo today...no food...me under my big love in the garden...my wonderful banana trees.
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greatjohn
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Darn great john, you are one of my anchors here and I am really sorry to hear you have had yet another set back.... Wish I could give you some of my platelets,. My count is only half of what is was before Radiation and Provenge, but I still have some I would gladly let them strain out of me for you. I gave them for years with the explanation that they were for cancer patients, but I didn't really understand until I got aPca and joined here. Life is Beautiful sounds like you. For me Life is Good and lately I have felt better than I have for a long time so maybe Life is Beautiful right now would be a better statement for both of us.Doug in North Idaho..
EDIAM…”every day is a miracle “. I think of you often Doug and always pray for a long and happy life for you. And with as little pain as possible🥰Life IS beautiful Now!
Ever see see the movie ' El Cid' with Charlton Heston and Sophia Loren?
As we would say in the UK, you are one top bloke, John. You inspire us all with your positivity , with what ever is thrown at you.God Bless you !Take care
John, I’ve been on my journey only a short time but your messages always lift me up. Thank you! I can’t send you platelets so I send positive thoughts and energy instead.
Bill actually looks forward to seeing the staff at SCCA. He knows the names of their kids, and where they are from. They always greet us with big smiles- even when I in my protective mood and asking so many questions. A big thanks to the staff. Thanks for your posting- does a PSA of 980 win the highest number here? I think you topped it.
It turned out my oncologist told me the wrong number I believe. I checked on my website and it says my PSA was 942.2 /that sounds much better than 980. Although still pretty terrible. The nurses at the infusion center here at Sylvester in South Florida are wonderful, but after a while just looking for a vein to hit that will work becomes a nightmare. Are usually have them laughing and having a good time as well.🥰
John,After 2 Cystoscopes, I demanded anesthesia on the 3rd. Lightly went to sleep, woke up, pee’d to prove all was working. Done. I do not dig cameras going up what should be a one way shoot. Just a suggestion. Best, Mike
Great picture! Boy...do I admire you! Your attitude, knowledge, ability to pivot, your sense of humor, your constant helpful advice. You are a true force GJ. We're cheering you on and hoping for good news.
Bean,Like PCa. Each man presents differently. I was literally kicking and screaming both times had tears running down the corners of my eyes. NOT my imagination!
Like you, they said not too bad, “but no one ever asks for 2nd’s”. 3rd time I demanded light anesthesia.
During mine, I was able to see the monitor. It was sort of boring until it was in my bladder and I could see the evil cancer there as well as the UR could. Knew immediately that it was bad.
and mine when I had it done..looked horrible like a haunted mansion..all through my urethra and then when it went into the bladder....all pink and pretty...LOL. I hope he can figure out something to keep me from having the bleeding. I've been doing great for over a week...but I never know when it will start back.
Keeping you in my thoughts, I use a hot water bottle on my arm for 15 to 20 mins prior to the mining for a vein (docs got tired digging! Nurses run away when they hear I’m in for a blood draw🤣). Although I end up with a very red arm, it does work, a vein always rises!
I’m waiting right now for Bill to get done with his blood draw. He always comes out with multiple warrior bandages because they can’t find the veins. Thanks so much for tips for next time.
I just left (with my husband) our Elder Attorney...and he says "you look amazing just for 64...let alone what you're telling me about the cancer". I guess that's a good thing. Most days I feel pretty good! some days I feel a little extra tired and achy.
I am going to quote you and tell you that you're so right! "Ediam"~~every day is a miracle."
"I know I have helped some people (especially on my online cancer support group) and that's made me feel really good. Life IS Beautiful NOW! " You definitely have and keep doing it, bro
Yes, your numbers are going up and you have done a lot for the last 8 years and you are on track to call out for a restful holiday from this disease burden. I wish you the best healing. To be honest going by your photo you are looking great.
GJ, it all boils down to MBS: Mind-Body-Soul thingy that we need to align in ourselves. Trust me sometimes I am at a lost after doing everything I am told to do from my good oncologist, good doctors, great wife, sons and in-laws, and good meaning friends. Tried almost all from herbal, to medicines, to exercise, to prayers faithfully, to eating right, to fasting, to thinking of good things all the time, to not get easily riled by silly people, to not watch news and get excited, to watch funny movies and comedies...the list goes on and I guess you get my drift, in my short 4 years journey; diagnosed on October 9, 2017. But sadly, my numbers have their own mind, to which I am not allowing to take control over me as much as I can.
Basically, I have decided on the quiet and shared many times in this fantastic forum, to enjoy the Present cause I can't change my Past and my Future...hmm, I really don't know how its going to play out. I just want to stay around as long as my body can hold on and hold up. This dreaded Covid has not helped much as I yearned to travel with my wife and even considered meeting up with as many of you as I possibly can; just to say hello over a cup of coffee and smile a lot...that would have made my day but at the moment keeping my fingers crossed for all the good things. Enjoy your restful holiday and stay positive, I am rooting for you to get back on the saddle and ride strong again very soon. Don't let the numbers get you down, one good step a day.
My very best to you and loved one and your beloved pet ❤️
your words are wise and so true and comforting! Thank you so much, I am humbled by your thoughtful and beautiful reply. I think we're both "in a good place" on our journeys. All the best (X 100). gJohn
Good luck as I said before your attitude is my inspiration. Love the pics. Pet your dog for me and treat yourself to a great meal. Maybe a nice seafood platter. Peace brother and long wonderful life.
I was stationed in Hawaii for a short period of time on my way to Okinawa. We had a formation each morning right next to a banana tree (probably several, but I just remember the one). I would pick and eat several every morning. They were fairly short in size, anyway, they tasted NOTHING like store purchased ones!!!
I have tried for years to grow banana trees in Carolina. Have to dig them up each winter and store them until spring. They keep coming back each spring to try again. I don't even care about the fruit, but I remain in awe of the plant's tenacity to come back and survive. You inspire and give hope, my friend. Ediam.
The reason you are blowing everyone away is your attitude. With that being so positive and grateful you’ll continue to defy all odds! My husband uses castor oil before going in our sauna to help detox. It’s magic stuff
Great John, You are a very special man with a beautiful soul. You are truly an inspiration. Love and prayers to you. Regarding the comments about the blood draws, there is a device, AccuVein veinfinder that illuminates the veins. Insist that it be used. My husband had impossible veins and it worked every time. (Mathes72 widow)
Enjoy your R & R, make the most of it as you are headed to more fighting. Glad Castor Oil, red grape juice, and cranberry juice worked for you. Hopefully, Zytiga will work for you, too. It did wonders for me (along with Prednisone). Good luck and thanks for the update!
I saw them live in their heyday, in central park. We sat in a crowed round circle and when I stood up to take a picture, his mother did at the same time, and both of us burst out laughing. Taking a picture of each other in the crowd. They were and still are one of my favorites.....
I always look forward to your posts! You really are “great”!
EDIAM is so true…words to live by!
You keep fighting the good fight, John! We all need your optimism, experience and wisdom! You lift up so many souls everyday…we all need you! Plus, I like to see your latest recipes!
Stick around. I like your posts. FWIW: The day I turned 21, while living in Fort Lauderdale, I went into a little hole-in-the-wall dive bar on the beach called the Elbo Room to order my first (legal) draft beer. This was 1963.
I know of what you talk about. Used to Pura Vida up to 2 months a year until my 2018 diagnosis. The tiny bananas are delicious! I am on Cabazytaxel, prednisone right now: hope it works!
That is what I was trying just recently, but my PSA went up and my platelets and hemoglobin and all my cells in the blood went down. Had to stop. It was my second time trying to do chemo… the first time I did very well with taxotere . Wishing you great success!
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