Good morning all... Hope that each of you had a Merry Christmas. I am 67, an have stage 4 Pca for 16 yrs. It has been a fight, but with the help of of my Lord, wife and family i have made it this long. But i assure each of you that should you not take treatment into your own hands you will die. DO not wait for the doctors to come up with something new. Recently there were a couple announcements of new treatments that were great possibilities to slow down or stop cancer group. I sent the info to 3 orgs. asking them if they would investigate and get back to me. Its been over 3 months, guess what , not one has responded . Also, there is a Dr. Sears that is selling tumeric pills that declares this is the answer to cancer an other health issues. Anyone aware of this Dr. and product. An as one scrolls thru the vrs. blogs, have you noticed the differant treatments the Docs. are using in differant parts of the country, An to mention using a supplement to most Docs. is like spitting in their face. Do any of you know about the cancer Moonshot Program? Is it active and if so who is in charge. I have been all over the board here an it is on purpose. There has to be a way to pool our resources together, from info and money if needed to put some DOCS. or research people to work for us. We survive we can no longer wait on the trickle down theory if dealing with bone mets. and other advanced Pca. Should we do this we surely die sooner than we might like.
SO i want ALL of you to throw as much back at me as you can or will. Then we can go thru an decipher whats, whats an see if we can begin to assemble a plan of action. There may be drugs that work in other counties, that are not FDA approved. WE need to be aware of these. SOme may choose to use others not. So come on fire back at me an lets get started putting info together for our Survival.
Ken Lyerly
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lakebubba
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You are right about the supplements...they are all scams...as far as new treatments go there is no way around FDA approval unless you want to pay all drug costs out of pocket...right now you need mCRPCa to qualify for most new drugs..otherwise you are stuck with lupron/zytiga...the good news is lupron/zytiga causes castrate resistance...so it is the best way to qualify for the new drugs....right now nalakrats a PHD who got his degree from The Gator Institute for the Criminally Insane swears by raw gator liver, but you have to catch a gator then wrestle him into submission, no easy task even for 2 men...right now I am following the PDD Diet (PCa Death Diet)....steak...eggs..cheese, so I figure I have 12 months left I GTH (Go To Hell)
The "moonshot" bidencancer.org/ as I heard it was announced by VP Biden, and the goal was to increase progress by a factor of 2. The straightforward way to do this, it seems to me, is to increase the number of trials by a factor of 2. I would say especially the smaller phase 1 trials. This requires, I think, an increased willingness of to conduct multi-center trials, at least to the extent of being willing to administer the easy procedures at a local facility.
I have been involved in two trials that required travel and overnights for procedures that could easily have been performed at my local cancer center, after enrollement.
Some trials are cancelled for lack of enfollemtn, and if this is because everyone else thinks it is pointless, perhaps that is valid. But that is not generally the reason for the lack of co-operation I feel.
I been diagnosed Advanced PCa Stage 4 with metastasis to lymphs the spines and ribs.
I had 2 Cystoscopy recently I have right and left ureteric stents. The reason episode was due to my stupidity. Can you imagine a cancer patient like me feeding on 850 g canned peaches in syrup over 2 days.
Cut the story short.
I have been pain and fatigue free until Boxing Day 26 Dec 17.
To most of you pain is when the cancer overcomes you. But I am suffering this slight discomfort due to me taking control.
After 2 days feeling weak I am improving and hope to surprise some of you who were totally skeptical.
Burnett1948. The American Prostate Foundation say you must take Black Pepper with you Tumeric. It works for me and slows down my PSA rise but it won't cure Pca. Tumeric tablets by themselves are a waste of time and money. I have proved this. Also an English University have tested combining this Tumeric mixture with Pomergranate juice, green tea and broccoli, I believe spaced out during the day. See Jessie1963 post here for the required Tureric mix.
Bubba, you have been a survivor for 16 years? Tell us how you have survived? The reason I ask is that every once in a while we get people that post and have all kinds of agenda to tell us about, usually promoting some kind of supplement or something that no one knows about that can cure our PCa and usually is anti medical profession or Anti-FDA in some way. And I do not personally believe it is Dr.s or the FDA that are holding anything back, I would lay the responsibility on the drug companies that do not want to sink money into projects that would not be profitable. Supplements are profitable with little evidence that they work. Our Dr.s, by and large, are doing a great job for most of us...So let us know your secret to long survival.
I fully appreciate the inputs by Don1157. Hope you are not mocking at your own survival of 16 years! We have reached more maturity in our struggle and are more inclined to look at scientific evidence with no secrets.
Sixteen years with stage 4 PCa is just remarkable! I’m 4 1/2 years since dx but realistically probably closer to 14 1/2 years since PCa first started to grow. Too bad there’s no consensus on treatments of the disease. At age 69 I was given the option of either RP or IMRT + ADT at bx as Gleason 9. Uros suggested RP and ROs suggested IMRT ...surprise!
Not wanting ADT or weeks of RT, I chose RP which went without complications. After bcr , I had RT and ADT three times, including IMRT to prostate bed and all pelvic lymph nodes and sbrt to femur met. Total of 170 grays !! Controversial? Yes, but effective!
No supplements but metformin, estradiol patches, vitamin D3 and calcium and ADT3 ( Lupron, casodex and dutasteride) and now xgeva due to bone met.
Conclusion: debulking (RP) , carpet bombing ( ADT3) , image guided bombing (IMRT and SBRT) and selected meds and supplements work!
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