and today I had to go back for a platelet transfusion...as they had dropped to 18. My Neulasta Onpro went off at 6 pm tonight...and even then...(I'm taking Claritin) I am still feeling great all day. I do have incredible dry mouth and my taste is off. I tried sucking on ice a little. I also put ice on toes and fingernails. My latest PSA has jumped from 699 to appx 850. Gotta hope this works and it doesn't kill me with my low blood counts. I was advised to go another route by someone I really respect on here...it was to do the massive testosterone shots for 2 months and then 1 month of Xtandi and no testosterone....repeat...and hope for a miracle. My doctor was totally against it.
I asked her what she wanted me to do...and I said...well this time here's how it's going....
you've gone to medical school and YOU are the oncologist...so I am going to do what YOU think I should. If I die...it's on you. I'm tired of being my own specialist. I'm 8 years into this come Jan 14th...so I'm doing something right. My Primary care doctor had not seen me since early in the year (since I was away in Omaha for the LU-177) and he had seen my numbers and my scans...and I'll tell you his face was blank and he did a double take...and then told me he was surprised I was still mobile and not in a wheel chair. I was also given "hospice's number" on my phone on speed dial. In spite of that he said "I would never guess you had cancer from the way you look". I do want to last a lot longer...my puppy turns 8 on Jan 14th and I don't have anyone I think can love him as much as I do. *note he's been with me exactly since I found out I had the cancer.
I did ask my oncologist for oxycontin and she said sure....but you're not going to take an over dose and kill yourself she asked? I said no. She gave me 60 for a 30 day supply. I've been taking about one a week just for "fun"...I will say they make me feel GREAT.
I had someone on Facebook (and you might know I have been very honest on there with my diagnosis and my treatments....make his second comment in 8 years...about something I said....not relating to cancer. I wrote back and told him I wasn't thrilled with him...and he said "he doesn't share his personal stuff and health issues on Facebook...I unfriended him and left a long post about how many people have had their lives change....one a friend who after I was honest about my issues...he called me and said he had a very rare cancer call PMP and was on chemo. I went to work researching the disease and then told him to call a man I had met at the Moffitt Cancer Center (in Tampa when I went for a 2nd opinion) who had made me feel like he knew everything...I gave him his number and name...and he found a two hospitals in the U.S. that had doctors who preformed surgery (his doctor had said chemo until you die)...he contacted him...had the surgery and has told me that I am the reason he is alive. Being "discrete" is great...but helping people by being "open" is my path I have taken. I have made a dear friend in Las Vegas from a cooking group I am in...who when her husband was diagnosed with Prostate cancer she used my journey to help him... I don't feel like I need to change the world...but helping one person is enough for me. My Facebook page is open for everyone to see...you never know who can be helped or inspired by your words, your photographs...or your poems.
I hope my next few days don't get harder...it's been a breeze so far. The 1/2 dosage I am doing is probably the reason.
Best of Luck to all
gJohn
p.s. photo is of my "beard check" the morning before I left for this chemotherapy. I have been doing them on Facebook for the whole 8 years. I lost all of my beard down to just the mustache and goatee and a little eyebrows....I hope I can hold onto my goatee and mustache(my mustache doesn't grow...it just stay there. I still have to trim the goatee every few weeks.
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I pray all of your days are this good...my husband says Biotene (for dry mouth) really helps him...and I'm pretty good at loving those pups, seniors are my favorite & I used to run a rescue which somehow turned into older & hospice doggies...my beloved Annabelle went to the Bridge April 8, 2021 @ 19-1/2 human years old, so I guess you call that well-loved. I live in Texas, but I've got a big network. Enjoy each moment...🕊️🙏❤️🕯️🤗
Hoping your next days go smoother for you and you see good results and continue feeling good. You look healthy and strong! We all here are grateful for your posts and updates.
Keep doing what you want, not everybody will be on board but those that care about you will always give you room to be you. We share facial hair but yours looks better than mine. I keep hoping with every new post for that miracle drop in PSA. If having a good attitude was all we needed for a cure you'd have been in remission since I joined this forum and no doubt sooner. Stay you and give that puppy kisses for me. Mine was trying to climb on my lap while typing this, all 70 pounds.
You're amazing, man, keep doing your thing! Just out of curiosity, the testosterone shot approach sounds like the BAT therapy (not sure if I'm misspelling it..), would that be a possibility after the chemo?
I will probably have to find another Doctor Who would be willing. But she was adamant that it could cause me to become paralyzed as I stand now. She said if the cancer in all of my spine is lessened greatly that the treatment would be less dangerous 🙏🏻
I am a fan of BAT and have done it but very advanced cases should be very wary as it can increase bone pain. There are no reliable reports of its use for later stage PCa. Mets throughout spine are a definite no-no. If the cabazitaxel knocks it back well, it may be thinkable.
I’d like to find out more about BAT. I’m nearing the end of my first go with chemotherapy and have heard there was a chance of going back to Xtandi, which I did well on for 20 months. Zytiga did not do me well.
The TRANSFORMER trial showed that BAT before enza prolonged the effectiveness of enza for most. It seems to overcome resistance to the lutamides for a while. It is not as effective for abi. Other trials show that after enza has become resistant BAT will often allow a successful rechallenge with enza. Although no trials have been done with the next generation lutamides there is every reason to suppose it should work with them. I found that it worked well with bicalutamide. I would suggest at least 3 months of BAT before enza is a no brainer then try again after enza has failed and rechallenge. I found that it gets less effective with multiple repetitions. If you go to my profile (click the image beside my reply) you will find my reports of using BAT.
You have taken me back to the days of Dan59 a great friend and a brave warrior who presented his sword to us without laying it down when he left this planet. You will not die until some miracle happens! Still there is time 🙏.
Goat tee is the only thing that grows. Disappointed that the Lu177 didn’t work for you. I figured that for my backup when the Xtandi fails. John don’t give in to this monster, I know you have thought this out in your fight, just hoping for the best for you and your puppy 🙏🙏🙏🙏
Looking good GJ! I always look forward to your posts and I'm glad that things have been going well. It's awesome that you are helping so many of us by sharing your story. God Bless!!
Glad to hear that you are doing well. I received my first dose this past Friday, seem to be taking it well. Keep letting us know of your procedures and there outcomes and definitely your stories and your poem's. Always look forward too your posts. Prayers and good news ahead. Brad🙂
John, you are an inspiration to everyone. If people don’t want to read your journey, screw em. It’s real life and for someone like you to be vulnerable and put your life story out there, God bless you!!! I’m sure your journey has helped many!! I will certainly pray for this chemo to work as I do believe in miracles!!!
Great picture as always. Who is the menacing person behind you? I was thinking Che Guevara, until I saw the nose ring. 4 years later, my mustache and eyebrows are still just fuzz.
I have ADT anemia so I looked up my platelet count. I can now see the need for the transfusion. I would study Vampire techniques closely. Practice on the neighbors. Looks like you got a 5 year supply of Oxy. How great is that? I wish I had an answer.
There actually is no nose ring in the painting. I still think it might be Che Guevara. However I only recently found out who the artist is and I have owned it since the 90s. The signature was hard to make out.
Yes there are no easy answers no lessons learned in college Or in school. This is one time that a family, in the old fashion traditional sense of the family, would come in handy.
As I am progressing my husband is progressing as well. He’s been diagnosed over a year with Lewy body dementia. It’s a disease that seems almost worse than prostate cancer. It means that the person who would be my caregiver, needs caregiving. But still there are beautiful moments in the day. All the best to you.
Well damn…best wishes to you both. I don’t know what I’d do without my husband. He says the same…so I am hanging in there mostly just for him. Hugs to you both!
His issues(Lewy Body Dementia,etc) which I have not shared with anyone but very close friends and on this somewhat anonymous site) and being his full time caregiver with all of my issues… have created days for me that seem “unreal”. It’s made me wish for a helpful and caring traditional family which neither of us have. Hang in there! And big hugs back at you 🙏🏻🍀🥰gJohn
P.S. How did it go with your earlier leukemia worries ? I have been basically told that because of my treatment I now have leukemia. I’m having bloodwork checked every week for transfusions of platelets or whole blood transfusions. My hemoglobin is particularly low.
I was wondering if they would call it leukemia at some point. Are your treatments directed at low blood counts the same as they would use on somebody with leukemia? I had a thought about family and children yesterday when a elderly woman fell down in front of me yesterday. I stopped to assist and it was based on what she said. More people showed up that were better suited to assist so I continued on my bike ride.
They are calling it Leukemia in my case. And if you look it up you will see that chemo and radiation cause a type of leukemia. I have decided at this point to do something novel for myself. I told my oncologist that she went to medical school she got a degree, she became an oncologist and I am going to do what she thinks is best. And I added, if I die it’s your fault. Excepting that others know more than I do is making this easier. I am not going to work that hard at this point. I don’t have a medical degree although I started premed in college. Using my brain which is chemo fogged and no testosterone fogged and just old to try and come up with treatment for myself Now seem a little futile. At this point I’m trying to enjoy every moment of energy and light I have. Good luck on the journey!🥰🥰🥰gJohn
Buddy I have been following your journey and appreciate it's not sugar coated. I would think most of us want the truth, not some fantasy un achievable. Hang tough say it like it is.
It is clear from the number of responses each time you post that many people appreciate your openness and honesty. You have a lot of friends you have never met. We’re all pulling for you. So glad to hear you are tolerating the chemo.
"I unfriended him".......... I must remember to do that to my ex-wife, thanks for the hint. No hair is not an issue, cause that's how Mr. Clean got his start in show business.
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