We saw Dr. Kwon today and unfortunately we didn’t get good news.
In part, Dr. Kwon made comments such as:
* I don’t want to mislead you, you’re very sick
* you should be worried
* I can understand why you haven’t been feeling well
Although the scans for Jeff’s pelvis, spine, and brain appeared stable, Dr. Kwon explained that you have to look at the scans as a whole and what those scans are telling us is that there’s progression.
As Jeff’s PSA trended up the entire time he was on carboplatin/jevtana chemo, Dr. Kwon doesn’t feel like Jeff ever responded to it.
Jeff’s last PSA values went from 292 to 365.
Several months back Jeff had labs for the guardiant 360 testing. The results provided 2 different therapies that Jeff may respond to.
However, Dr. Kwon said, “there are no guarantees that you’ll respond”.
Nonetheless, it was decided to move forward with another oral medication. I don’t currently have the name of the drug, I’ll have to update that later.
Jeff just barely qualified for immunotherapy as well. To qualify you need a 10 and Jeff was 11.
Dr. Kwon ordered another guardiant 360 test to see if there were any more mutations and to see if his numbers had increased for the immunotherapy.
We meet with Jeff’s radiation oncologist later this afternoon. As Jeff is experiencing significant breakthrough pain, we are hopeful that additional palliative radiation can be administered.
Some of the problem areas have already been radiated. As a result this will lessen the chances of finding a targetable area, but we are hopeful for any relief.
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Pancake_Lefse
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Sorry to hear Jeff is doing poorly. I am on my second round of RT, hitting a new met in a rib and re-zapping my ischial tuberosity. Hoping this time my "sitz' bone met will quit being painful for good. Last zap lasted over 6 mo. Best of luck with this afternoon's ,meeting.
Dang nab it …. Hope you get positive relief with your upcoming tests and visits. I’m thinking positive vibes for the both of you . Sending out thoughts of merit. The good news is that they are still making tests , considering treatments etc. … you have live positive action happening. No plopping all his records in a box , saying goodbye, and sending him home to wait for the hospice nurse and team to visit in a few days. You’se guys aren’t in “ that “ place yet.
Hugs out to both of you again …
Go grab ( if it’s legal where you are , of course ) a couple grams of top drawer AAA Sativa bud …. Make a giant bowl of butter popcorn, get some drinks ( alcohol are better ) , box of chocolate bars and some soft cookies ……
Then take your next pain meds now ( in case you forget later … wink wink nudge nudge ), mix a half a gram of that bud into a gob of peanut better and each of you eat one … then the both of you get comfortable together ( within easy reach of the food loot ) and put on ( the big screen ) some bugs bunny or three stooges cartoons …. And veg outfor the next 5 hours laughing your posteriors off and end with that BIG nap you are going to want afterwards.
Hint: alternative to the TV stooges you can put on the Pink Floyd “ the wall “ music and that old home laser lighting you keep in the hall closet.
Love you guys , comm’on now … you are over due for some better news right about now ….
Yayahahahaya. …well cannabis is a great way to have a break from the harshness around us sometimes … its been over the counter in corner stores , around here , for many years. Kinda a “ ho-hum “ everyday thing. Seems like you guys could use a nice , upbeat, break for a change. Shake off all that dismal crapola .. at least for a little while. Clearly you both deserve it.
I’d be happy to be your party planner yayahahahaya , I could be considered a “ professional “ grade planner …. I’d find a way to take your minds off “ things “ , at least for a little while.
I’m pulling for you guys that the testing you are doing now launches you into that new treatment that Jeff responds well to and gives him a nice juicy chunk of additional time. Comfortable time. Got my fingers crossed .
Join the crowd on here brother … it’s hard to ignore the crap in your face 24/7. All of us are lucky that we aren’t shopping in the Jack Kevorkian home mail order catalog yayahahahaya yayahahahaya. Seriously 😂😂😂. It takes a special kind of guy to tough this stuff, seems like all the guys on here are “ special “ in that respect. Your “ some days “ are perfectly natural and understandable.
I’m sorry to hear your current news, but appreciate you letting us know. Hopefully the RO can help and the new oral medication is of value. I’ll continue to keep you both in my thoughts.
You two cannot catch a break. You need one !Some of the guys have had success with “Olaparib” as a last ditch effort and has given some surprisingly good turnarounds. But Kwon is your guy. Way smarter and more experienced than most everyone in the Country when it comes to PCa.
Jeff, you need to know, if you go down, you go down swinging. You have gone to the best Dr’s., and Cancer Centers of Influence. You have tried more therapies, and had more medical procedures than most of us.
When it is our time, our mind and body will tell us. I have been pulling for you Brother! Your Dx was tough from the start. “It ain’t over yet”. Let the power of the mind step in and wake up those white blood cells, and give you some quality time.
I THINK you are correct that it was “Olaparib”, but I’m not positive. I knew when Dr. Kwon mentioned it that I wasn’t familiar with the name and I had intentions of referring to the portal notes for the name and spelling. They haven’t updated the notes, yet? 🤦♀️
However, after we saw the radiation oncologist, she’s recommending radium 223. She was going to consult with Jeff’s oncologist and Dr. Kwon and collectively they’ll decide on best course of treatment. I anticipate on knowing more today.
Had you considered radium 223 it is available and helps with met pain. Very close outcomes as lu 177, the New shiny drug. Only a couple more months of median survival on Lu 177.
Actually, after we saw the radiation oncologist, she is recommending Jeff do radium 223 instead of the oral drug i still can’t remember the name of. She was going to reach out to Jeff’s oncologist and to Dr. Kwon to see if they agreed this would be a better course of treatment. I anticipate hearing something back today.
Thank you for the update pancake. It is such a battle. My brother also is constantly putting out fires. One thing after another. I pray Jeff finds something that will give you both some hope. Keep us posted!
Sorry you did not get good news, but you're still in the fight so follow some great advice I see you got and emjoy every minute and lets see what the future holds for you. Un abrazo del alma from Argentina
I’ve been reading about Protocel to cure cancer, including lung cancer. What do you think of this treatment?
ANDREW WEIL, M.D. | OCTOBER 22, 2010
Portrait of sad Asian with a cup of tea sitting at window
2 MIN
Not much, and I urge you to avoid it. Protocel® is one of the names given to a mixture of chemical compounds developed in the 1930’s by a chemist named James Sheridan who claimed that that the formula came to him from God in a dream and would cure cancer and other diseases. He called his product Entelev® and eventually gave it to someone else for manufacturing and distribution. According to the American Cancer Society the name of the preparation was then changed to Cancell® and was marketed for about five years before the FDA got an injunction that prohibited sale of the product across state lines on the grounds that it was an adulterated, misbranded, and unapproved new drug. Cancell has now also been renamed, and as Protocel is being sold as a supplement that helps the body remove “unwanted and unproductive cells.”
Promoters have advanced rather interesting theories about how and why it is purported to work, including mechanisms that have to do with cellular energy and the conversion of normal cells to cancer cells. One theory holds that a bacterium called Progenitor cryptocides is activated in the body by improper diet and causes cells to turn malignant. Protocel, which is also marketed as Cantron, supposedly cures the disease by blocking energy production in cancer cells.
In addition to cancer, these supplements have also been promoted for treatment of AIDS, herpes, chronic fatigue syndrome, lupus, endometriosis, Crohn’s disease, fibromyalgia, diabetes, emphysema, scleroderma, Lou Gehrig’s disease (ALS), multiple sclerosis, cystic fibrosis, muscular dystrophy, Parkinson’s disease, Alzheimer’s disease, hemophilia, high and low blood pressure, mental illness and some forms of epilepsy.
There is no evidence to support the existence of the bacterium invoked in the theory on how normal cells become malignant. What’s more, there is no evidence to show that Protocel (or whatever else it is called) has any anti-cancer effect. The National Cancer Institute (NCI) performed animal studies of Entelev/Cancell in 1978 and 1980 and found that it had no anti-cancer activity whatsoever. Another series of NCI tests in 1990 and 1991 using human cancer cells did not find sufficient activity to warrant further testing. And beware: the manufacturer of the supplements claims that chemotherapy interferes with their effectiveness.
If you have cancer, I urge you to rely on tested and proven treatments. They may be imperfect, and should not be used without weighing the risks and benefits, but they have a much better track record than supplements unscrupulously promoted as cures.
Andrew Weil, M.D.
I am open to alternative ideas but unlike other alternative therapies it looks like this one has been tested and failed.
You and the kids are his rudders.. he is blessed with love from you all . His pc is a vicious animal . I hate the disease . God bless you all in these trying times .. 😩🙏💔
I am open to alternative ideas but unlike other alternative therapies it looks like this one has been tested and failed.
There is no evidence to support the existence of the bacterium invoked in the theory on how normal cells become malignant. What’s more, there is no evidence to show that Protocel (or whatever else it is called) has any anti-cancer effect. The National Cancer Institute (NCI) performed animal studies of Entelev/Cancell in 1978 and 1980 and found that it had no anti-cancer activity whatsoever. Another series of NCI tests in 1990 and 1991 using human cancer cells did not find sufficient activity to warrant further testing. And beware: the manufacturer of the supplements claims that chemotherapy interferes with their effectiveness.
I too am sorry to hear this. You/ we just have to hope. Hope you get a response from the next treatment (RA 223? possibly).I'm with you guys and truly hoping you get a bit of a break.
Hope you get set on the next game plan and kick back and take a break that Kaliber suggested. Or at least your own variation of it.
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