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Advanced Prostate Cancer
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Provenge - is it worth it?

"Immunotherapies have so far been disappointing for PC, except for Provenge. But some are doubtful that even Provenge really has a benefit." Quoted from Tall_Allen. Second time I've seen Tall_Allen question Provenge. Already told I had Provenge in my future when Xtandi fails. 8 cycles Taxotere, 15 months Xtandi. Extensive bone mets. Should I opt out of Provenge? Ask for Xofigo (R223) instead? What is the next best step after Xtandi fails. Any suggestions Gentlemen? (Or Gentlewomen/ caregivers, don't want to forget you or those still here although their dads or husbands or relatives or friends have passed. Your knowledge is invaluable.)

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I have no data to cite, have no real knowledge about the effectiveness/ineffectiveness of Provenge...I can only report what I've read (observed?) here on this site...and, it seems to me that those who have reported trying using Provenge have also reported very disappointing results...overall. Exceptions/outliers will always exist, but from what I've seen here, it doesn't seem effective - or, not very effective.

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Agree with Spinosa. Also, hubs and I attended a talk in July on the very subject; sadly, the scientists just aren’t ‘there’ yet with immunotherapy for PCa. I certainly wouldn’t encourage my husband to go that route.

We are in a similar position with hub’s PCa, and just made an overnight trip to MD Anderson for a second opinion. I suspect that his new Xtandi treatment (+ qtrly Lupron) is shooting blank bullets. We are awaiting results - they did both a bone marrow & bone biopsy on the spot; in addition to taking 9 vials of blood to look for all sorts of markers. NONE of this was suggested by our onc., who we know is an excellent doctor. For these reasons, I simply cannot encourage folks enough to seek a second opinion from an institution that treats nothing but cancer.

Good luck to you!!

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This is an article with info about sequence of treatments in patients failing enza or abi. Apparently cabazitaxel could be a choice.

ncbi.nlm.nih.gov/pubmed/302...

These articles have more info about Provenge and Xofigo.

ncbi.nlm.nih.gov/pubmed/304...

ncbi.nlm.nih.gov/pubmed/292...

You could also discuss the possibility of getting in a clinical trial for Lu177 or Ac 225 treatment. There a few in the USA. One could get treated in Germany or Australia with Lu177 and even with Ac225 if one is acepted at Heidelberg, Germany.

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where i live and i don't have the $$$ to travel for the lu177. plus i really don't know if cures u as will or just another stop gap. i know if ones psa is high 600 and higher your going to die sooner because lets face it the higher the numbers it means more cancer going through out your body.

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Nothing cures stage 4 prostate cancer. One can get some extra time using one or another therapy to treat the cancerThe idea is to delay death by the cancer until other natural process takes care of you, mainly diabetes, cardiovascular disease, hypertension, obesity, stroke , heart failure, COPD etc. Some people get a few years, others get a lot of years. If it is worthy to go this road it is something that only each one of us can decide.

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Nothing but the truth..

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First of all, Tall_Allen is NOT A DOCTOR. He no license to practice medicine. 99% of his links are to his own personal blog that states HIS OPINION regarding prostate cancer. Anyone who takes any comments on this site as sound medical advise is putting ones self in harms way. If you want to read more Internet Dr. Google material, read the following in regards to Provenge.

prostate.net/articles/prove...

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Thank you for the link Bill68. I am guessing the answer is to go ahead and do it as it may help and probably won't do any harm.

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the coat is high but if u have medicare/supplement its free and to me try them all until they run out then this be happy its prolonged on life a few months or years. there is nothing in this life thats a guarantee guys right. just like why did we get this disease look at the others in women that don't live as long as most of us guys be happy and thankful

charlie

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Hang on a minute, Bill. You warn against taking advice from Tall Allen (who by the way repeatedly reminds people he is not a doctor) but you post a link to an article written by....guess what.....someone with no reported or demonstrated medical experience? And if you were being sarcastic, why even share something you don't find credible?

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I edited Bill's post to remove the link you referred to as someone with no reported or demonstrated medical experience.

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Thank you, Darryl. We are all entitled to our opinions, but that post didn't appear credible or based on science or fact. Perhaps I shouldn't feel this way, but the request for donations was a little off-putting.

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I understand your discomfort but.......Would you rather nonprofits be supported and “influenced” by $millions from Pharma, like at least one prostate cancer nonprofit is? What is the value of our extraordinary community in your and your husband? Malecare’s running costs are spare but they require money to pay for them, even with the massive pro bono and discounts I beg for ....and All of our services are free, like this community. We don’t charge entry fees or sell our influence so please donate as generously as you can.

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I agree, so I donated on-line..... it's easy and doesn't hurt.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 12/01/2018 12:37 PM EST

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I was referring to the request for donations on the site Bill linked...the link you removed. That was the topic at the time. I fully support Malecare and its mission and will continue to make contributions to it and cancer research organizations. Thanks for all you do!

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Excellent...and, many thanks 🙏

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I see the article says the lower the PSA and cancer burden ( the sooner the better) but I was told you can't get it until you are metastatic and or castrate resistant

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whats that?

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Allen may not be a doctor; however, he probably knows more about PCa than 99% of the doctors since he spends a tremendous amount of his time studying INSTEAD of working. I don't mean to be disrespectful of doctors; however, most of them that I know are too busy working and devote little time to studying after they graduate from med school.

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I completely agree with you as regards Tall_Allen, ronronHU.

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I see Baddawg is posting about Provenge also. Cost is not a factor for me here. It's just do I want to go through all the travel, infusions etc. If there is no evidence it even works.

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like all trails u need numberfs,u need time and for me recently finishing up its alot less painful then that stupid painful shot of lupron. again at some point our bodies will refuse the advantages of the shots and the drugs. were all guinea pigs until a cure. look at HIV how many died how long it took, now u can live with a medicine for ever.

charlie

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I can't let that slide by.

I am a doctor and have learnt far more since graduating than I learnt at medical school.

I and my peers spend many many hours trying to keep up to date.

In Australia where I am we have a very onerous process of documenting our continuing education.

We learn and read because we want to be as competent as possible.

The documentation of our education is to catch out the few who would not do the required learning but it is a pain in the neck for the rest of us.

None the less your comments about Tall Allan are true.

He does have extensive considered knowledge about prostate cancer. I find his post generally well considered and useful.

I disagree with some of his assessments but I disagree with many of my colleagues more often.

This is difficult stuff and disagreements are important and enhance the process of getting to better outcomes.

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There will always be exceptions. The exceptions being the doctors who are competent, empathize with their patients, keep up with the new developments in their field and are genuinely devoted. In my reckoning barely 20% of all doctors fall in this category.

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So what is your opinion on Provenge Doc does it work well or not

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It works somewhat with low volume disease. It is not effective with bulky disease.

I don't understand why.

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Dear 'Metungboy',

Obviously my comments above do not apply to all doctors, and I'm sorry if I've offended some of you that are truly devoted to your profession. My daughter (pathologist) and my son-in-law (neurosurgeon) are both doctors in Chicago and I am well aware of the tremendous amount of time and effort required to reach an MD's status. They have a four year old daughter and my daughter can't seem to find enough hours in the day to tend to being a mom let alone working. Ryan just finished taking his 'Board Certification' exam and had 'zero' life between working and preparing for the exam.

I personally have four very competent doctors that I have the utmost respect for; all whom reply expeditiously to my many emails, and have been greatly instrumental in my wellbeing. You mentioned that you practice in Australia; one of my docs (who I have never seen, but is a colleague of my doc at UCI), Dr. Declan Murphy at Peter MacCallum Cancer Centre in Melbourne has been extremely helpful and kind.

While I was still flying, many of my doctor friends (mostly GP's) and I spent a substantial amount of time working on/flying our planes...I often wondered how they had time to even work and sleep!

Regarding Tall_Allen, he is not an MD; however, has an extensive biochemistry and statistics background, spends many hours each day studying PCa and helping people with treatment options, is a source of many trials, and comes up with valuable referral information in almost every North American city!

P.S. I did give you a 'Like' on your post since it was well deserving!

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My husband's doc was involved in the original trials of Provenge. He's very much a skeptic but you can find others who believe it is very effective.

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Thank you for the reply TNCanuck. I'm starting to see from the replies it seems to be a flip of the coin.

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I think that's probably the case, but if money is no object, you might just be on the right side of the flip. :) Best wishes!

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a lot of times its attitude what your brain thinks

charlie

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I think Provenge works, but I understand their objection: The problem with Provenge testing is that in the placebo group, the dendritic cells were extracted but not incubated in the same way, which may have caused them to die off. So the placebo group may have had fewer dendritic cells than an average person. That might make the treatment group look better than it really is. Still, there have been several trials of Provenge which have been favorable.

i would try to use it in conjunction with radiotherapy (SBRT or Xofigo) or docetaxel - therapies that generate a lot of dead cancer cells - and puts their cancer antigens in the serum for the activated immune cells to find. Hopefully, the primed T cells will then go on a search and destroy mission (abscopal effect).

pcnrv.blogspot.com/2016/08/...

The synergy may work in the other direction as well - the activated immune system may be able to kill off any cancer cells that were damaged but not quite killed by the radiation:

pcnrv.blogspot.com/2016/08/...

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Wouldn't combining Provenge with docetaxel be counterproductive, since chemo tends to kill your immune cells, and Provenge tries to 'teach' your immune cells to target PCa?

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Just the opposite. Chemo is certainly myelosuppressive (reduces output of white blood cells and other blood cells from bone marrow). So what one wants with it is an immune stimulant that makes up for the loss. This is why Leukine (GM-CSF) is sometimes given to men who suffer from neutropenia (loss of white blood cells) due to docetaxel. Provenge includes GM-CSF, which can make up for the loss. So by combining docetaxel with an immune stimulant, one can mitigate the worst side effect of docetaxel AND increase the number of cancer antigens to make the T cells more effective. There are some ongoing clinical trials that are looking into this synergy.

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Interesting... I looked into that, and I see what you mean!

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Fantastic reply, Tall_Allen. I am going to talk to my MO's about doing immumno while on chemo. Lets see what they say.

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I am not a Doctor either, and I often make this claim, as a researcher I report on sometimes controversal subjects, new substances, that may or may not be of benefit, new findings in supplements, my own research, by combing world-wide papers on Pca, and simplifying Research Papers so the common man here can understand them.

Lets use some logic--after reading the above comments ahead of me. Now tango--gave you some other types of treatment---but lets stay with Provenge and put it in a category.

There is not one damn treatment yet that puts us in a guaranteed durable remission, or offers a cure. We have only one claim; that from Tall_Allen, that he is cured. Well the rest of us are not!

So the category for Provenge is IMMUNOLOGY. And yes there are both sides of that coin you want to flip. And a quick meta analysis, seems to prove it helps as many as it does not. And with most treatments that are used we get kind of the same issued results. Choices, Choices! And I will make a bold statement--that the reason we have so many splits on what works and what does not work, is so simple it is almost never discussed. That being: that our Prostate Cancers are all individual diseases!!!! The individuality comes from the fact, that we have about 20-25 pathologies or combinations. We then add in the Gene Mutations possibilities[Hundreds], have them or not, or have one, or many, combined with the combinations of pathologies, with upon obtaining Pca--did we have many, none, some, Stem Cells, Tia Cells that came along for the ride. Now we take into account and further make more permutations, and probabilities, from all of these combinational aspects, and further add in for determination, DNA sequences[ what we call letters, out of place], mRNA sending the wrong signals for protein production to our cells; initial treatments, such as Surgery, various Radiation techniques, and Initial drug treatment, with or without Chemo, that is known to do something to the remaining Pca cells that were not killed off[A Morphing]. And what we have we do not initially know---other than the fact we were not cured. That upon initial treatment we became palliative, if even not being able to detect cancer cells for 20-30 years. Yes we have had bio-chemical failures that have occurred after that much passing of time.

So Provenge is an Immunology Procedure. So if I were you, and I am not, I would consider the whole category of IMMUNOLOGY, and not just Provenge, by itself. Or you could, just consider Provenge. That is your choice. But if you have the time and will; there are today as of Oct. 30, 2018, that which has been publicly declared; 290 trials of different [Immunology Drugs], combinations of drugs and processes[like a Car-T], that are in go, around the world. There are on top of that 2,900, give or take, Immunology, I will call them substances, that are being tried and tested, everyone of them has gone past the rat stage, and Humans are being tested.

With the Noble Prize for medicine given for the Category of Cancer Immunology, you can easily surmise where this whole thing is heading. All of this work is being designed world-wide to activate our Killer T cells and let them do their job, of seeking anything foreign that does not belong in the body. The Winner will be sitting on over many years more than a Trillion Dollars IMO, unless controlled by Government/Governments.

So Monte---you are definitely in the right category[Immunology] as to Provenge. It is an old treatment and one that has some success. I cannot advise what you do---but I am reporting, that you are in the right category, and somewhere within that category today, with the 3,200 total materials and evaluations going on, that there may be in existence now something that does not require a coin flip, or one that will be here soon--I pray. As the cut slash and burn treatments that we have used for 40 years IMO, is no more applicable.

It is IMO all about Immunology, and Provenge is one such agent. As the multiple hundreds of diseases we have under the category, of Pca, requires a final solution. Pray on your decision--do not flip a coin!

Nalakrats

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Nalakrats

On a different subject, and when you have a second, could you educate me or give me a reference about EDTA clearing out of arteriosclerotic plaque. My last CT showed 'severe arteriosclerotic aortic plaque' as an 'aside' when looking for shrunken lymph node response to ADT

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Wow this will be a long response including where to go.

I will get back to you--have Service to go to.

Nalakrats

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OK free to talk about EDTA--it has a history going back to 1937---when the Germans were looking for a substitute for Citric Acid, one of their Chemists Produced the Molecule EDTA. It was not a substitute, but they found it bound itself to heavy Metals in the body, like Lead, Mercury and all of the Plus 2 ++ Valances--which would mean things like Iron, calcium, Cadmium[Usually in the body from smoking]--sorry to talk chemistry--as I am a Chemist. As our sailors were coming home after WW2--many were suffering from 2 diseases Lead poisoning from painting ships with Lead Based Paint, and Chest Pains from Artery/heart disease--some men wen to war in their 40's and came out in their 50's. So the Sailors were treated with EDTA, as it was approved for heavy metal poison--what happened was a big surprise---> as their heavy metals were being removed by IV infusions of EDTA, their Angina left also. In the 50's Alternative Med. Docs. picked up on this and started treating Angina and arteriosclerosis, with EDTA--and they refined the process by putting back the good minerals that were being taken out. What they were going after was the Calcium, in the hard Plaques. As the calcium was removed--usually after 30-40 treatments, the hard fats got soft started flowing in the blood and the arteries widened, and opened up relieving Angina.

On the way, Neuropathy in legs due to Diabetes, and even cataracts were cured. As the calcium removed with other metals caused these benefits.

So the American Heart Association, got the FDA to go after the clinics, using an approved material, even though off-label that Doctor can freely do--and they closed down by raiding clinics, Put Doctors in Jail--etc. Thus an association was formed, and with very famous Hollywood people who were Chelating, Like George Burns, Bob Hope, even Ronald Reagan---the pressure was taken off--but the Gov't made loud noises that they did not approve.

In my case in 1994--I had one block 98%, 2 at 95%, and my carotids--were 85% blocked---today we cannot find anything--actually my last Sonogram on my carotids, was less than 5%--not bad for a 75 year old.

Now as to cancer---Chelation, is used with Woman's Breast Cancer--going after Copper, as some pathologies are full of copper--and by removing they get great results. Not all cancer pathologies have copper, Some Pca cancers also have copper, and even though for Breast Cancer they are using another agent, EDTA would also work. If you can find an old post of mine on Chelation, about 2+ years ago--it may read Chelation and Copper. where EDTA, removed Pca Cancer cells that had copper as part of their molecular make-up.

Think that is enough for now---I understand that probably I would be the most experienced on this--here--but have written enough to answer you--I think.

Nalakrats

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So if I wanted to pursue this, guess I should talk to my cardiologist rather than my MO?

Guess it's a silly question to ask if this is an FDA approved procedure?

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Yes it is.

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The VA approved me for Provenge, I had request it...But there was a qualification interview which i had to clear. Not with the VA but with a rep for the contractor (a cancer treatment center) who performed the treatment in Denver. (there is only one). We had the little chat and the rep recommended that I do chemo (Dosetaxel) instead as he felt my cancer was a little to far advanced for Provenge to do much good..I thought that was rather strange as the VA was willing to pay for it but Dendreon passed on an easy $130K....I think they would have done it, but they really worked to discourage me from pursuing it..

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And I have already been to the chemo lounge. Psa is low but I also have the bone mets. Waiting for my .2 psa to start rising. A lot of new info for me to try and digest. Thank you everyone for your replies. Trying to get my ducks in a row. That's for you J-o-h-n. You should be able to do something with ducks in a row.

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i've been alive for 10 years now. as for xtandi it lasted a few months then went on to the rest of the drugs out there and liked zytiga until i couldn't get it. then as the months drew long and was taking lupron/eliguard i went from 12 psa to 28 and testosterone went to 38. Now everything with lupron has reduced and will start zytig tomorrow. what my oncologist and a specialist in Seattle told me this tx isn't to reduced ones psa to 0, nor is it to stop the cancer but what it does is help on the psa and correctly help ones immune system to build it up, make one stronger and help a person down the road when one becomes weaker as time goes. remember there is no cure we will die from prostrate cancer thats a fact. the good thing is, as we take more new drugs it has us live longer until maybe they do find a cure or something that we can live in our 80s or who knows what.

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If it is free, why not. I did it and insurance paid it. I had no side effects. Needles were scary when they did the Leukapheresis. I would NOT consider Provenge a life pack, but perhaps it helps in a small way as you do other therapies and continue the battle. You have the right idea to prioritize all treatments and do the most effective treatments first before doing Provenge, or schedule Provenge between treatments to give you a break from side effects of those other treatments.

Provenge had no side effects for me, and gave me nice 3 month break before starting Radiation to a pelvic bone.

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I cannot speak about Provenge... But for my lung melanoma Keytruda is working for me. Thank God and everyone else.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 12/01/2018 11:44 PM EST

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john... you have melanoma in your lungs? Or metastases from prostate cancer? (I have several small metastases in my lungs.)

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Answer: Melanoma... I have Pca but the Melanoma was from skin cancer. BTW I asked both my Pca Oncologist and my Melanoma Oncologist about any benefit to treating my Pca while taking Keytruda. Both responded "no benefit". Too bad.... However for the metastases in your lungs from your Pca I think it would be a good idea to ask your MO if Keytruda is the way to go. It's expensive $30K per treatment. I'm being treated at Memorial Sloan Kettering cancer center in NYC.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 12/01/2018 11:21 PM EST

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I just did provenge this fall, about 8 months after my initial failure of ADT - with a rising PSA last January after 3+ years with undetectable PSA on Lupron (combined with an initial 6 infusions of docetaxel) .

During Provenge my PSA was measured at (.17). About one month later my PSA was at (.26). One month after that, and my PSA was at (.29) - a much smaller jump. Is provenge slowing things down? I don't know. I also started a complementary protocol with my naturopath after provenge, alternating artemix and indole-3 carbinol weekly, along with continuous Turkey Tail mushroom. I'll have my first scans since my PSA started rising later this month, and I suppose I'll learn a little more about what's happening. (Note that my PSA has always seemed a bit low to my doctors in relation to my metastases. I have ductal adenocarcinoma, with one bone met and 5-6 nodules in my lungs.)

My question now is... as I am considering working with a doctor on 'metronomic' chemotherapy - continuous weekly low-dose for months or more (which is worthy of another thread entirely.) But I have to question if that would that kill off my new Provenge-inspired immune cells? i.e. would I wipe out the benefits of provenge if I go to chemo too soon? Something to consider if chemo is a possible next step for you. For me, current discussions point to holding off on chemo as long as I can keep a low PSA and do not show new mets popping up.

My understanding going into it was basically that there may be no way to verify if I actually receive any benefit from Provenge. It seems like all we know is that if we give it to a lot of people, some of those people get a little bit more time before they get sick and die... mostly measured in months; but on an individual basis, it won't show any drastic changes in PSA and symptoms... it may just be that I am doing better than I would have been without it.

Does your doc say that all your blood markers, etc. are a green light? My doc recommended I should do it now while I can... because if my health changes I may become ineligible. In that vein, my insurance company tried to deny me on a technicality, but my doc made the case and got approval.

Honestly, it feels a bit obscene to spend $100k on a treatment which maybe buys a little bit of time, even if it is the health insurance company's money and not mine. I was telling my wife the other day that if the insurance company offered me $50k NOT to take provenge, I probably would have agreed :)

The side effects weren't bad. I did have to get a hickman line in my chest because my veins kept going flat and causing trouble getting all the blood out for the leukapheresis. The first time I tried to give my blood they didn't get enough and I had to start over. The second time it took like 5 hours and several IV attempts to get a full blood draw. After that I got the Hickman for the remaining two draws, which went smoothly. But having the Hickman was a bit of a hassle:I was really glad when it was removed so I could get back to normal showers and swimming for exercise. I feel glad that I did it, but my approach was and is mostly "why the hell not?". It's all in the rearview mirror now!

Good luck!

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Wow. Thanks for all the details. Since you are 20 years younger than me I hope the Provenge gives you a lot more than just a few months. Keep on truckin' and hope someone, somewhere says "Bingo" I got this figured out. A lotta people working on this problem. A lot harder than going to the moon. But there is an Einstein or group of Einsteins out there that will make this a manageable disease and I hope it is your lifetime. I of course would like to live as long as possible, but at my age I see no since in being greedy.

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As you probably know, with ductal PC, serum PSA is not correlated with progression and may be low and erratic. So it is especially difficult to judge the effectiveness of Provenge or anything else by the effect on PSA.

I don't think docetaxel kills off dendritic cells or T cells that have already "memorized" your cancer.

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I just came across this: "Despite significant prolongation of survival in Phase III trials, the challenge to health care providers remains the dissociation between objective changes in serum PSA or on imaging studies after sipleucel-T and survival benefit. On that basis there is an unmet need for markers of outcome and a quest to identify immunologic or clinical surrogates to fill this role." i.e. it's hard to tell if it's working by looking at PSA or scans for any individual, even though we know it helps people when we look collectively.

ncbi.nlm.nih.gov/pmc/articl...

same article: "None of the sipuleucel-T trials has demonstrated significant decline in PSA value or delay in time to disease progression in patients treated with sipuleucel-T, making it difficult for physicians to know if a patient has gained clinical benefit. It is increasingly evident that responses to immunotherapies are slower compared to androgen deprivation therapy, radiation and chemotherapy [65,66,67,68]. Cancer may remain stable or even progress for some months before protective immune responses become apparent. Counter intuitively, the initial vaccine-induced inflammatory response may be mistaken for tumor growth in much the same way as inflammation in the brain after radiation for glioma can produce pseudo-progression. In a similar fashion, disconcordant early rise in serum PSA and/or flare effect on bone scan in prostate cancer patients with osseous metastases is common with response to androgen pathway modulation and chemotherapy."

AND.... in response to my own musings above, about combining chemo with Provenge, this article also talks about the benefits of combining the two for a better overall outcome!

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Thanks so much for the link. I'm seeing the answer is like you say "why the hell not". Provenge plus something that pisses the cancer cells off at the same time.

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look not sure if i had written on your questions. if u have taken zytiga until it doesn't work the provenge doesn't guarantee a huge drop of your psa it will work for some. its goal is to build up ones immune system which according to the docs mean a longer life even when your body is saying give up. the procedure is't all that bad and if your psa is good they mention another 4-5 more years and thats good because they are coming out with new meds. u have to also remember alot of these drugs the guys are mentioning aren't always available where u live. that means extended travel for it. remember all meds or tx will end at some point. the body gives up on them. i've been fighting this for 10 years and i'm still around. some meds is about ones attitude not health so u have to decide on whether its worth it or just give up.

charlie

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I have been through Provenge. It shrunk nodules in my lungs and they have stayed dormant for the last 4 years. So yes Provenge is worth it.

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Donating to Malecare today. And thank you bleith1945. Where could anyone ask a question about advanced prostate cancer and get so many replies by so many people who have knowledge of these treatments or have actually done them. And I mean people who are giants. Thank you everyone.

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Wow! That's encouraging... good for you. I'll take some of that too!

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Hi Monte1111,

Provenge came on the scene about 10 years ago, and some blokes are stilll alive after having the treatment then. But the makers / inventors said it gave an extra year of life and they got FDA approval, and back then price was $90,000. But as some time went by, the year got revised down to 4 mths, so not many got a fix for many years. I had a couple of emails from a long time survivor, so if you can afford it, its a gamble that might be better than spending it all as Los Vagos.

Just about all blokes come to the end of Pca suppression by castration drugs or hormone blockers, and I did, at begining of this year, so when Psa went up to 12, I started on Docetaxel, and after 5 infusions and 15 weeks Psa went to a max of 45, and I suggest to doc that it was a failure. He agreed, and gave me a referral for Lu177 which is available 300km away in Sydney.

one month after my last chemo shot I had Psa 26, but many bone mets, and I had my first Lu177 4 weeks ago. I will have blood tests tomorrow plus talk to a doc within 10 days before Lu177 No 2 shot, and maybe another scan will be done. But its too early for me to say if Lu177 is working to lower Psa and reduce the size of bone mets.

But Lu177 is a fairly gentle form of Atomic Warfare, wheras Actinium 225 is maybe more effective but has worse side effects; both these work by gathering a radiactive isotope close to tumour sites for the short half life time they have. I may end up getting Radium223 which replaces calcium where a lot of activity is going on which is what is happening in bone mets, so the radium is absorbed into a bone tumour and its short distance radiation kills the live part of the bone tumour which is really prostate cancer.

It is said that two Lu177 infusions can do a lot to reduce all soft tissue Pca mets in organs and lymph nodes, but it seems it takes longer to kill bone mets.

Side effects are loss of saliva glands and tear glands. I'm OK after one Lu177 shot but I expect side effects after two shots. I still have side effects from the chemo.

Docs say I am the healthiest stage 4 cancer patient they have ever seen because I cycle 20km to hospital to talk to them, and I cycled over to hospital to get the last 3 chemo shots, and did at leasy 15km on every day after the last 2 shots.

Having quit chemo, I am now doing 230km each week on bike and averaging 24km on some 60km rides, and I feel fairly well, and not needing pain killers.

The biggest bone met problem is in my cervical spine and I am a little stiff there but no serious pains.

For Lu177 to work properly, PsMa scans should show that all your cancer makes an image in the PET part of this scan. A CT scan may not show much until the mets become big enough. So your Pca needs to be what is called "PsMa avid" or else Lu177 won't work. Look up Google for Theranostics Australia and you can read about it better than I can describe here.

The Lu177 treatment is usually 4 infusions about 6 weeks apart, so 24 weeks total. I know a man who has has 7 infusions, and in Germany, where Lu177 was first used, some fellows have had 10 infusions.

Cost here for 4 infusions is aud $38,400.

The mean extension of lifetime is 14 months, and maybe those who turn up for it with low Psa might get more life extension, or be able to need on 2 infusions, and get more later if they need it, and if their Pca does not mutate so it becomes non Psma avid.

I expect Pca to kill me. All I can do is delay it. ADT and Zytiga etc is sweeping Pca under the carpet, or kicking the can down the road, and my Pca spread widely and to many places despite the ADT etc. Chemo may have failed, but probably failed to do much with bone mets, but could have killed a lot of Pca cells in soft tissues; so the meaning of the word "failed" is not clear. Pca is usually a disease where every treatment eventually fails. 30% of blokes die from effects of Pca that has spread to many places. But what happens to the other 70%?

Some have an RP that gets all prostate gland tissue cut out, including the part with cancer, and before any spread has occurred, so Gleason score is usually less than 6. But a Gleason 9 means its already spread, and it will kill a man even though the RP seems successful.

Part of the 70% die from something else other than from Pca or side effects of its treatments. So the healthier I live, the bigger th chance the Pca takes me rather than something else.

I'm 71, Pca began maybe 2004 when Psa was 3.0, but diagnosis wasn't until Psa > 5.0 in 2009 when I had a Gleason 9+9 and it was not operable. I was diagnosed Too Late, and a bloke should plead with a doctor to be fully examined if Psa is 2.8.

I have a friend who has taken only 3 years to get where I got in 9 years. RP, ADT, chemo all failed, so he had his cancer analysed and docs now have him on chemo for breast cancer or ovarian cancer. Hoo Noze what the outcome will be. My friend says if this chemo does not work, he will try for Lu177.

In last 3 years, Lu177 has become available in Australia. In another 3 years, maybe immune therapy that is cheaper and more reliable than Provenge might be here.

Patrick Turner.

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Thank you for your always thoughtful reply. You have been dealing with this for a long time. I wish you the best of luck with Lu177. Hopefully I will be able to get the Lu177 if I need it. Seems U.S. is lagging on this one. And when it is approved the insurance companies will also lag. Cycle on my friend.

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i am sure that your level of exercise has contributed to

your living so long with this disease..

Keep up the good work..

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Thanks to one of my favorite truth tellers. Don’t think Leswell will make it as long as you, but, as you wrote so charmingly, “Hoo Noze”. What a brave fighter you have been. Highest admiration! Mrs. S

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You may already be aware of the Care Oncology Clinic in the UK, with whom some very highly respected oncologists are associated, using a repurposed drugs combination strategy which includes doxycycline (antibiotic), mebendazole, (otc anti parasitic), metformin (diabetic) and a statin for traditional use to manage high cholesterol. Sometimes aspirin is also mentioned. This strategy has reportedly had quite good outcomes treating cancers that are not or are no longer responsive to standard treatment. My husband and I have raised this with our oncologist, so may be looking at applying it down the track. If you're not aware of it, maybe a next step.

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Thank you so much for your reply. I am going to ask for the metformin today. Am on the edge of diabetes so they may approve it. I am so sorry you are both dealing with a rare cancer. As if just having common cancer was not enough. Maybe Tall-Allen's suggestion can help you. Good luck to you both.

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Thank you - yes, we will talk to our oncologist about that option. At the moment my husband is 'sampling' Xtandi - seems to have had a positive impact over last 3 weeks, and our onco will also assess that today. I thought you might also be interested in the following articles that look at positive interactions beetween, respectively, metformin, berberine and quercetin.

ncbi.nlm.nih.gov/pubmed/288...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pubmed/287...

Best wishes.

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Thank you for the links. My psa was 1.7 before last #8 chemo. After 16 mo. Xtandi has slowly dropped psa to 0.2 Not sure how important psa is in your circumstances. Do not have any huge side effects. Hope you find something that can help you.

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Another interesting article along the same lines

theprostateadvocate.com/pdf...

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Ad I have stated before on this list, I had good results with Provenge. I think it's worth it.

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