I have kept my cancer treatment to a personal basis sharing it only with some family and friends. Almost 7 years ago, I was diagnosed with Stage 4, Prostate Cancer and a Gleason Score 9, positive margin. As most, I went through prostate biopsies, the radical robotic proctectomy, radiation treatment, and hormone treatment. I took all the available treatments, Lupron, Casadex, Xtandi, Zolodex, and just went through my first round of Radium223 with the experimental pill called Olaparib.
Before starting Radium223, they wanted me to get a bone biopsy so I reluctantly went in to get that done. Just as I questioned the biopsies on my prostate, I questioned getting the biopsies on bone marrow. They potentially spread cancer throughout my body despite doctors stating it's not a threat nor compromising to my treatment prospects.... I challenge that and just about everything at this point.
Before starting Radium223, I started taking Ivermectin to see if it had an effect on my tumors. Within 3 days, all the pain was gone. It was amazing and while I can't medically prove what happened, I know 100% that it improved my life. The largest tumor of 45 was at the top of my right femur and walking was restored to normal.
When I went to get the biopsy, they first said it would be in my spine, then hip, and then changed it to my right femur while on the table ready to go. The nurse technicians actually debated why the changes. While under partial sedation, I could hear everything as if I was participating in the procedure. The bad part was I could feel everything and went through unbearable pain when they drilled into my bone. Originally, I was told 3 biopsies would be collected but they collected a total of seven, all from the same hole.
When I returned home, pain set in and within 24 hours, it became intense. I took Advil but it wasn't enough. By Saturday morning, I had to go to emergency because I could no longer walk and was stuck to crutches. Between 15 days from the procedure to when I saw the Oncologist to start the Radium22 treatment, more than half was very painful stopping me from work and normal day to day functions. If it was going to hurt this bad, they should have said something! My question is why would they pick the single spot wh ere I bear the weight of my body when there is 44 other tumors to pick from? I was furious. After telling my oncologist, his response was, "at least you are through the worst part of it now". I feel that I should have gotten up and walked out right then and there.
With the lengthy list of side effects for Radium223 that they insisted get immediately, I reluctantly proceeded. Remember, other than the pain from the biopsy that was now almost healed, I had no pain in my tumors. After getting the first of 6 injections of Radium223, I started the 225 mile drive home. By the next day I felt fatigued and sore, similar to flu or a bad cold. The next day it got worse and I felt sore all over and my tumors all started hurting. By the weekend, I could barely move around to extreme pain in all my tumors. They gave me hydrocodone which did help for a while. The bad part is I live in pain only relived by pain medications. It really pisses me off!! I don't believe the doctors are shooting straight with me and push a slow and painful death instead.
I don't fear death as we all have time and date stamps. I explained in great detail that I want to die with dignity, and not suffer some sick, slow, painful death. These folks are tone deaf and worship the almighty dollar. They feed me a line of BS just to push their lab rat experiments. It's about betrayal and it's about dishonesty. It's also about an institution that treats symptoms and never utters a word about anything (alternatives) not on their scripts or menus. When I asked about other possibilities, they quickly dismiss them backing it with the excuse that it would already be a treatment option if it was so great. *I said I agreed with exception options that won't make money will never be available. They didn't like my honest opinion.
So, here I am, it's show time, do or die time, and I have everything to gain and nothing to lose at this point. I don't accept what they offer and will either find a miracle or die looking.
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Kaiheitai77
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SZowie, You have been run thru the ringer. I'm in my 5th year, Stage4, Gleason 9, RARP, positive margins just like you. Lupron, chemo and Xtandi. Orchiectomy to get off Lupron, chemo finished (9 cycles) and xtandi at half dose. BCR this year with climbing PSA but clean scans. Na-F18 scan showed 2 bone mets. Radiation therapy to them and Provenge treatments. PSA now dropping, pain gone, feeling good. Sorry for your mess. Sounds like you got in with the wrong Onc. team. They should be listening to you and be honest about treatments. We NEVER know in advance which treatment will work for us and we are all different. I have been extremely lucky in that all I have tried worked. Stay with it, Lots of knowledge and experience here. Hope you can get help with alternative treatments and peace with healing from now on. Life Is Good, but only with QOL.
Incredible that they have put you through so much pain & misery. Yes, I do question the methods they used to obtain bone biopsy. Send you thoughts for strength & relief from pain.
Informed medicine is the bases of all treatment. It does not sound like your doctors are keeping you informed. You need to speak up. You deserve answers.
I have gone through Radium 223 treatments and my experience was good. No bone pain since the treatment five years ago. Some of your pain and discomfort may be due dying cancer cells.
I don't think I would give up on the treatment yet. I don't know where you are getting your treatment but you need strait answers from your medical team.
Where I struggle with continued treatment is my two options are “you are going to die” options. They will not cure me, only extend death. My immune system designed to fight disease and infection got the bottom knocked right out of it with this first round of radiation. Red blood platelets, white blood cells, hemoglobin, and the whole bunch are zapped all in the name of treatment. It’s a huge fail in my medical opinion by our medical community. They are so far off the mark and looking at all the wrong sources for beating cancer. They treat symptoms, that’s it.
Welcome Kaiheitai77! I get what you are saying . You’ve been through some shit . I’m with you in that it’s all experimental on us fellows and all hormonal cancers . I was the same, dxed stage #4 less than seven years ago at 53 years old . I pray for a miracle for you and a peaceful path forward .
My dad was diagnosed in 2017 with Gleason 9 stage 4 advanced prostate cancer with just small tumours growing inside his bladder. I just want to say you are fighting the fight brilliantly as he passed away in late 2020, the earliest life expectancy he was given. He had a very rough ride and was neglected quite a lot. Unfortunately I couldn’t tell you exactly what he was given. I know he was on hormonal therapy which did nothing for him. He then went onto radiotherapy which helped ease discomfort and he went onto chemotherapy after suffering from kidney blockage which caused him great pain and agony. He said it was the worst pain he’d ever had. My dad unfortunately did end up dying a very long and drawn out death. Not painful. But certainly not a dignified way to go. He made the mistake of having 10 more rounds of chemo when a doctor advised him that quality of life is better but in late 2019 he’d taken those 10 rounds and by January 2020, he became bed bound and was sick every single day between 3-15 times. He then lost all feeling in both legs and was unable to walk. Doctors just treated him as a lost cause at this point and didn’t aid with the spinal progression. It was watching him get sick every day that was so sad. He lost all of his weight and looked awful. He didn’t pass until august and suffered right from the January. The 2 other people I know who died of cancer were only in ‘end of life’ for a few days if not a week. So I felt it was so unfair on my dad. Nurses just kept saying he’s holding on for dear life. It’s not a humane way to go if you ask me. But my dad would’ve put up through much worse for much longer to stay with us here. But in terms of treatment nothing actually ever worked for my dad, nothing shrunk any tumours, nothing stopped rapid growth. It just bulldozed its way through everything so to hear you are still alive and kicking with an aggressive cancer is amazing! You’re already beating the odds as far as I’m concerned
Dear Mrs. Croft98, Please except my sincerest condolences regarding the passing of your dear Father. His pain is gone and he has joined the other angels... May God Bless you for being a wonderful daughter. Please stay with us we need people as sweet as you.
I am sorry that he suffered so much . “Inside the bladder,” that was bad . I had them blocking my bladder and urethra . But much different than inside I’d expect? My dad also had this but passed 18 months after an RP from a heart issue . We lived 2000 miles apart at that time . I saw him a month before he passed . He was skinny and gaunt .I felt bad for him . There is Not a day that goes by that I dont love and think of him still . 24 yrs later . Love is eternal .. end stage APC sucks .. I’m sorry that you saw it . 💔😔
Great question. I’ve been back on it 4 days now but still am unsure what toxic levels are and how much is safe for daily doses. I’m guessing 35-40mg for a couple weeks is safe.
Bro, I agree with everything that you have stated! I was convinced that the three major surgeries that I had were the way to go; however, in retrospect, I wouldn't have subjected myself to any of them. My RP resulted in BCF, and left me totally impotent & incontinent. My nephrectomy was a disaster since the tiny mass that three doctors 'thought' was primary renal cell carcinoma ended up being just a benign cyst. And the lymph node excision was simply a waste of time and money since all it did was to lower my PSA for less than a year.
Your statement, "I said I agreed with exception options that won't make money will never be available.", is in my opinion so true. My success with a $20/month skin gel (which is not approved or available in The States) is a prime example!
Hoping that you find that "miracle" and can enjoy many pain free years.
My RRP and lymph node excision were done at UCI, and my nephrectomy was performed at Baylor in Dallas. None of the three doctors recommended biopsying my kidney for fear that if the 3 cm cyst was malignant, a biopsy could cause the cancer to spread. Obviously I lost the kidney for nothing! I really need to have an AUS installed; however, after these three nightmares, I don't think that I will ever volunteer for another surgery.
Im with you....Treatments are picked, i hate to say it by money. I have been off lupron since the plandemic. It failed me anyway and i always questioned, why take it. Xtandi has been working . Last psa and testosterone check was 35 for testosterone. Actually went down from previous test. Psa inched up a few tenths to .029. I was told to go back on lupron. I qustioned that again as im still below the threshold. I was told by my onc that if i dont get back on lupron any change from Xtandi if needed will not be covered. Blah blah blah. Testing again next month. I told her ill do 3 psa rises before taking lupron again as when i went metastatic they told me they had to wait for three rises before acting. Pharma and the medical comunity in general has lost all trust from this guy.
I’d ask for Provenge (Immunotherapy) now while your PSA is low. They waited until mine was somewhere in the upper 20’s and it failed. It’s now approved sooner. My PSA is now 740.
"Doctors are men who prescribe medicine of which they know little, to cure diseases of which they know less, for human beings of which they know nothing "
Semper Fi my brothers! Any of you stationed at Camp Geiger or MCAS New River back in the day? A bunch who were stationed there are coming down with cancer. The Corps has sent me 7 letters but nobody responds to the emails or phone calls. Makes me wonder.
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