It is rather disheartening to hear negative, less than hopeful words coming the onc doc who has Harvard and brown creditials, not that means you know everything. Her latest recommendations which is wise, is a referral to M.D Anderson. I am vaselating on treatment abroad india or Germany for LU177 or Ac 225 whatever is suggested given my advanced state. Although just completed 8th round of cabataxal and carboplatin yesterday. Psa down incrementally from 243 to 25 thats encouraging to me then I meet with my oncologist asking would I like to discontinue treatment and allow nature to take its course, my reply was I just golfed 18 holes yesterday without a cart and worked 5 hours in the evening and then walked my dog on the beach. Does it seem like I am ready to give up yet. Then a somewhat fetching social worker came in my infusion room to relay the same suggestions. Are you folks crazy, im not giving up on me and if you are, its time for me to move on from this venue. Tomorrow a appointment with a highly recommended onc doc to hear what she has to say. MD Anderson in the hopper and overseas is a option , although my primary onc says there's more risk than benefit .if I had hair I would pulling it out. Or maybe I'm the crazy one thinking there's hope. Its a complicated maze of hope and uncertainty after 5years 8 to 10 treatments and a great deal of pain and misery sprinkled with hope and joy. Such as life.
Dr gloom and Doom did not give me a g... - Advanced Prostate...
Dr gloom and Doom did not give me a good prognosis.
Good results on the chemo. I think that's encouraging.
I agree, but onc says progressive side effects are imminent and dangerous after 6 infusions im going on 9 and have noticed some uptick in neuropathy and nausea, and vomiting. Psa going down is motivating. Whats your thoughts on Lu 177 or ac225, or stay the course with chemo despite my oncologists fear of added side effects?
Lu-177-PSMA did well in a comparative trial:
prostatecancer.news/2020/05...
Ok, I going with some good ammo on my 3rd opinion oncologist.
"although my primary onc says there's more risk than benefit" How does he know that? I guess he has not seen a patient who got Lu177 therapy.
Lu177 is expensive and not curative. It can delay the cancer for half a year or more. But chemo or xofigo will not cure you as well.
I have seen chemo cure many people, do some more homework please.
Docetaxel was approved by the FDA because it showed a benefit in overall survival of 2.4 months (18.9 versus 16.5 months).
clincancerres.aacrjournals....
Just as Cabazitaxel. This was approved by the FDA because it showed a benefit in overall survival of 2.4 months.
ncbi.nlm.nih.gov/pmc/articl...
Both were compared with Mitoxantrone which showed no survival benefit:
pubmed.ncbi.nlm.nih.gov/258...
A benefit of 2.4 months is no cure in my opinion.
Docetaxel isn't the only chemo available to patients. Maybe stay away from the German lager? Time to broaden your horizons. You referred to all chemo, don't just Docetaxel. Are you a medical doctor? If not, please don't spread false claims.
Docetaxal i tried 6 months ago not good for me. Current chemo is helping but doc says side effects dangerous after 6 im on 8 going 9
They dont mention reduced pain with chemo. Perhaps you wont live too much longer, but you will have less pain. Forums say combine cabazataxel with carboplatin for longer remission. This is true. Did 2 rounds of that combo and my psa got cut in half each round and pain stayed away longer.
Please name such a chemo for PCa?
Cabataxal and carboplatin after 6 months according to onc
True any other drugs suggested at this point I'm open to suggestions
I hear you.
"although my primary onc says there's more risk than benefit" What risk? What's the worst that's going to happen to me, doc? Funny how we are the ones with the cancer killing us and the doctor wants to talk about risk? Some people just don't get it.
Quite a few people on this forum have travelled to get LU-177 and AC-225 treatments with good results. Yes, it's not a cure like anything else we do, but it could extend your life as it has for many. If you can do it, why not?
I agree this is the last chance summer dance. I'm still dancing.
Keep on dancing and take the lead! You will know when it’s your time to waltz amidst the stars. From some of the replies here, it seems your dance card is not yet full. Good luck with your consultation. I have no suggestions about your health but will pray for you. Mary
Thankyou. Save the last dance for me.
Yes a couple years back brahca 2gene but nothing helpful I was told.
I am pretty certain my immunio therapy made me ineligible for parps, I will verify this tomorrow. Any other great questions to ask my 2 nd opinion oncologist. Whats your thoughts on lu 177 or ac 225 and is radium 223 a good gage to determine if those two treatments could be effective.
I know yours are opinions. Are opinions valued, and I appreciate and have gotten some wonderful guidance from you thankyou
Before doing Lu 177 you should have both a PSMA PET scan and a FDG PET scan to see whether you would be a good candidate. The treatment is not cheap and you would want to be as confident as possible that it would be of benefit.
I don’t want to be a ‘wet blanket’ but I thought I read in one of your earlier posts that your mets didn’t express a lot of PSMA. For Lu 177 to work there needs to be good PSMA avidity.
Wishing you well.
I tried a clinical trial and they did a scan that was specific to that study according to the doc i asked if that psma scan is comparable and his answer was no. I heard there was a significant waiting list at only two locations ucla and San Francisco neither are available anytime soon unfortunately. So I figured a trip to say india or Germany and the worst case I'm denied and I got a trip abroad. Oh well.
Heidelberg is nice.
Yes, the cutting edgiest - to my knowledge- scan approved by the USA FDA is done c a specific Gallium-isotope (Ga) PET scan - I don’t have the precise chemical abbreviations at hand. As of this date (18 Mar 21), it is ONLY available at retail (not clinical trial) at UCLA and UCSF, as already noted above, BECAUSE the FDA has so far approved its use ONLY in those two research locales. MAYBE one other place but can’t remember. This particular Ga scan has been proven to provide very significant imaging improvements over next best scan which is better than previous best, etc. Plus, constant testing of new imaging isotopes is picking up speed.
Read my profile on my 7 exposures to Lu177 and at different stages of mCRPC. Totally PET PSMA (FDG) dependent.
Baile Costarica1961! I’ve followed you since your first post . I too ,was born in 61. Kids from the 60’s now almost turning 60 .. God willing . caught my eye.. 10 treatments in 5 years is one hell of a row to hoe . I greatly admire your inner strength and will to live .. It sounds like to me that the Gloom crew just can’t fathom how tuff you are and your desire to live . When you said “ I’m not giving up on me and if you are , change of venue “ that hit home for me . A great lesson for the newbie is that if you give up on yourself you’re done .. my docs are giddy as hell that I m still kicking after they said I’d be long gone by now . I don’t think that you know the word quit.. Go for the lu-177 . I d expect no less from you ... it’s not the pura Vida that we all had hoped for .. it is suffering ..making peace with self and our beliefs is most important now . I’m grateful for the five decades of good health that I had prior APC.. I’ve been on this “ gravy train” myself six years this month . That’s a dammed miracle . There is no cure for #4 ,but hope springs eternal ,and without hope there is only gloom and doom . I don’t see either of those in you. Much respect brother . 🙏
Spot on brother.
Hang in there brother. You’ve got 12000 of us pulling for you 🤙🏽
I heard about a British study where a humongous Lupron shot is administered to totally ablate any testosterone and then a large does of synthetic TESTOSTERONE is given....seems to have completely "cured" a number of patients who were unresponsive to other treatments. I know this seems similar to the bi-polar txs given here but it's worth a Google or two...
Interesting. I wonder how much Lupron and T ?
Couldn't say but this was within the last two years or so - lost track with Covid, but it's NOT old news....Google any combination of British, castrate resistant Prostate cancer, synthetic testosterone and should get a bunch of hits...good luck!
Could you please share a link to that information?
Having difficulty with the link bu here's what you have to do: the article appears in the London telegraph Dec 1, 2016. the title states: MAN CURED OF PROSTATE CANCER AFTER DOCTORS SHOCK TUMOR TO DEATH. You may be able to simply google that phrase and get the article, but I'm pretty sure you won't be able to read it (I couldn't) unless you sign up for a free trial with the telegraph. Pain in the ass, but worth it!
That’s fascinating and hopeful cheeto88. Thanks
Do you have link or cost locations etc thankyou in advance.
No I'm sorry; I think Johns Hopkins in Baltimore does this treatment, but I'm not 100% on that....
Never give up, there’s always hope that tomorrow will find a cure for this monster. 4 1/2 years here. 🙏🙏🙏🙏
I concur good luck on your journey.
Tomorrow tomorrow? As soon as I kick the bucket , they’ll find a cure . Today im clear . Only the shadow knows ?? It is gods will for me. F fear and f the suffering . I pray for my brothers that are worse than me .. pluck the day .
This is an obvious kick in the gut. I am sorry.
You have listened to good advice offered by your Onc (whose crystal ball is no better than yours, by the way). Only you know how you feel inside your skin: you present yourself as very vital, still very active and very determined. Another independent opinion might help guide you as you weigh the risks to your well-being of added chemo .
Thats precisely whats confusing, am I becoming the only one seeing myself as vital. Sometimes its nice to get feedback from the boys on the forum. It reminds me I'm not alone. Thankyou.
This makes you one tuff hombre amigo. It s easy to cave into fear. It is hard fighting APC . But I understand the chemistry gone wrong of it . Walk with a smile even when In brutal conditions be compassionate towards others and you’ll receive more love than ever. We are all in same leaky boat . Some nearer the Niagara Falls than others But none shall leave the raft . A peaceful ending is my prayer . I spent life in the fast lane. Now I’m that blue head just takin in the scenery along the way ..2-3 million pc cells could be hiding inside of me, waiting for the main event. We fight to delay being that meal . Please update me on what you choose to do. God bless you !🙏
Absolutely thankyou. My meet with new onc was a breathe of fresh air.
A doctors word be it good or be it bad effects us ..you need his fresh air . Great news 💪
I met with my radiation oncologist yesterday his opinion was LU-177 should get approved "soon". The other issue is the PMSA scan. The radioactive die for the scan has a very very short half life so if the scanning facility can not make the die on-site it can not be transported. Good luck to all who are waiting for this treatment. P.S. Who knows wat "soon" means to the FDA.
Time is of the essence, I wish they would FastTrack cancer cures like covid vaccines. Thanks.
Never give up Costarica! We are all with you, and you are tough as hell!
I don't know the words give up. You can give up when your gone. Thankyou for the words of encouragement.
If you have time to watch a Netflix movie there is a line from the “ ballad of Buster Scruggs saying” God forgot to put the QUIT in this one.. “ this western puts a different spin on the hereafter . 😳
Love your fighting spirit and embrace of life Costarica. Yes get another PSMA scan to make sure you have avidity. Then argue for (request) Ac225 combined with Lu177 to enhance efficacy. Combining with Veyonda (idronoxil) also an attractive option available in Australia under compassionate use. Not sure about in Europe, perhaps in England at GenesisCare. As also consider trial of BAT. There has been much more published about this recently so should have more acceptance.
Would hold off on Ra223 if you are going for Lu-PSMA to keep total radiation load down. Good luck at MD-A and give your dog a rub for me.
practiceupdate.com/C/114237/56
Very good advice and I will rub bruno the lhaso opso. His favorite moment in life.
Just my two cents but my brother was tested for mutations a year ago. We just had him tested again a month ago to reveal an explosion of mutations with new developments. He has MSH2 and MSH6 and CDK12 which may qualify him for Keytruda. After two years you could have developed new and different mutations which may qualify you for other clinical trials or treatments available. I definitely would insist on another DNA test
I will ask my 3rd opinion doc about that today. I appreciate your two cents it all adds up.
I would insist on another DNA test.
Hey Costarica1961!
I like your spirit! With the knowledge of your doctors, have you considered any alternative treatments?
Don't give up until YOU decide that the game is over. Your oncologist followed by a "fetching social worker" telling you it's over after the nice day you had the day before? A tag team! Good for you! Gad Almighty! Monte Python! "Are you dead yet?"!!! Kervorkian comes to mind! The WHEN is your decision! I'm glad you stood your ground. I think the time with your dog while feeling the breeze off the ocean, the smell of the ocean and the love coming from your dogs eyes, isn't something to end without the last battles. Try again! Keep looking! Oh and golf clubs too! You will know when.
As I wrote above, with the knowledge of your doctors, perhaps you should consider some new, more optimistic conventional providers that are willing to consider some alternative help and changes.
I once had part of a team ask me how I was doing mentally and spiritually. Not quite fetching but I politely declined any manipulation of how I think.
I am sorry you went through that. Your onco--"The patient doesn't want to die. Go talk to him--smile pretty, talk soothingly, change his mind". How about when you tell him you want to keep trying he said something like, "Let me ask colleagues, review some research"--whatever. What did he actually tell you? That his level of experience, knowledge and expertise are near the end. Him, not you.
I am hoping that you find something. You'll be in my thoughts.
Currumpaw
I will find something or die trying. There's no give up in me. I get a little down but not out. I appreciate your words of encouragement. Keep the up the good fight.
😂👏🏼👏🏼👏🏼👏🏼👏🏼
It is an arduous journey we face. Your chemotherapy results do sound encouraging. Hang in there brother.
Nothing to add. But I'd like to know how your appointment goes today. Good Luck,
Ok thankyou
Appointment went well she suggested continue chemo and then transition to radium 223
Hoping 2nd opinion may be much better than Dr. Gloom and Doom. It's almost summer. The beach must be fantastic.
It is, looking forward to claiming. I just had my 2nd opinion and she was a delight.
🥳
hi Costarica1961 ... i encourage you to take a look at envita.com ... best wishes ... Nous 
I will thanks, have you went through this treatment
you're welcome ... i want to do Envita
Very expensive 100 to 120k with zero compiled data on sucess or even median life extension. I spoke to them and they said after 20 years in business they have no stats. That's strange to me, anyways I do appreciate investigating these places because there .ay be one or some that may have validity. Thankyou
You have to do what you do to do as you do............
Give them hell Amigo..................
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 03/17/2021 10:56 PM DST
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You're right as always my friend. I hope your doing well😜
No one can know you better than you and your onc can't measure heart, hope and will. You've got this brother!
None truer words. Thankyou
What a difference a doctor can make? 🏋🏻♂️
Exactly! You are the boss of you!
Just a suggestion: you might look up the Care Oncology Clinic. They are UK based but have oncs in the states. Their protocol uses off-label drugs like mebendazole and metformin. You can also google "off label drugs to fight cancer". There is a lot of information out there. I am stage 4 PCa, oncologist out of options, starting metformin, fenbendazole, atorvastatin, loratadine, plus supplements and vitamins, plus veggie diet. My onc is prescribing the meds so I did not need Care Onc. Will update if it works or publish my obit.
I will look into this, I currently take metformin and atorvastatin and mega vitamins. Good diet. but good to know.
You might also look at a book, How to Starve Cancer by Jane McLelland. I checked it from the library but then bought, full of great information. She pretty much pioneered the use of off-label drugs.
Going on amazon now Thank-you.
ok, God bless
something else you might check out: youtube.com/watch?v=NOpTmY3... integrativeoncology-essenti...
I am now 71 and in Dec. 2015 was a recipient of Dr. Onik's early immunotherapy combo injection for my GL10. I just bicycled 101 miles on Monday in recognition of the 9th anniversary of a bicycling buddy who was hit/killed by a semi as he began the last week of a Prudhoe Bay, AK to Key West, FL bicycle ride.
My future is simply wait and see.
We just left M.D. Anderson, terrible experience. I would look at others. Anderson is # 11 for Urology, should be lower.
Md is suppose to be A#1, sorry for your experience
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