Hi I am a new stage4. Metastatic in bones,
Psa 800 Gleason. 5+4=9 trying to decide what to do. Just had first Lupron. Any advice,,doc wants to do chemo. With clinical trial.
Forgot to say am 62 years young
Hi, my name is Lynn/caregiver... My husband was 65 when first diagnosed. PSA 483.he was operated on a tumor in his left arm, radiation treatments. afterwards put on Lupron and casodex. Did great for nine years!! My husband Sam is now 74 years young!! Unfortunately the cancer returned this past year. Chemo, radiation etc. just one week ago had a suspicious LN removed, waiting for biopsy? Thinking back I wish he would have had the chemo early on?
Good luck to you, hang in there, there are so many new treatments today.
I wonder why doctor didn’t offer chemo right away? My dad is on Lupron and then had Provange has the Lupron injections consistently along with Zytiga now and I asked what’s next after Zytiga he said chemo I was in shock and didn’t ask why he didn’t do it in the first place?
Cytotoxic chemotherapy is very rough on the body and has a significant impact on quality of life. Most men find Lupron and Zytiga much kinder on their systems.
The previous standard of care was to provide chemo only when nothing is likely to work better.
There is some new thinking along these lines, especially with some new chemotherapy protocols that aren't as rough as the old ones.
Thank you I’m just so confused and the dr said that would be our last hope my dad is 80 he’s a young 80 but he takes care of my mom who is 82 and she has dialysis 3 days a week along with heart issues and diabetes he has no time to care for himself but he enjoys it but down the road I don’t see how he will handle chemo the Zytiga seems a lot along with the Lupron and Xgeva shots he gets in just thinking what our next plan would be besides chemo and why that wasn’t the dr first line of defense? I guess it’s too strong but down the road I don’t see my dad handling it
I'm not following your reasoning.
If your dad's system is too weak to handle chemo, why would you want it to be have been the first line of attack, when Lupron and Zytiga are so much easier on the body?
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It's possible I've misunderstood the conversation you had with your doctor. I pictured something like this.
You: "Doctor, if the Lupron and Zytiga should fail, what would be the next thing after that might prolong his life?"
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To put it in a different domain:
If you had a back ache and sought medical attention, the first recommendation might be over-the-counter medication and exercises. If that didn't work, you might be given prescriptions for pain medication and physical therapy. If that didn't work, some doctors might possibly suggest surgery.
But nobody would suggest surgery as a "first line of defense".
Why this an analogy?
Back surgery is debilitating and expensive, takes a lot of time, causes permanent damage to the body, and often doesn't work. Exactly the same can be said of cytotoxic chemotherapy.
Yes I think u misunderstood me. When my dad was diagnosed 2 years ago he was much more stronger physically I know it’s 2 years ago but he was stronger, physically as we all age we get weaker even without sickness just the stress of everyday life. So that’s why I wondered why he wasn’t given chemo from the beginning. While he was stronger and more able to handle or mange the side effects. Secondly I don’t know where u live but surgery for back pain analogy is great but where I live surgery is the first thing these surgeons and dr push on is I have back issues and so does my husband and my dad too the MD that saw my dad was forcing back surgery down our throats so we saw another one and he too wanted back surgery as a first suggestion they don’t suggest pain pills cause they are addictive and physical therapy is a joke so I’m sorry most doctors suggest surgery as a first line of defense in that analogy I have had that experience for a while.
Also most other cancers they treat with chemo and radiation immediately so I just wondered why not that from the get go it cures a lot of other cancers like breast but of course every cancer is different.
And NO I don’t want my dad to have chemo his own doctor told me that would be thie next thing if Zytiga doesn’t work because xtandi would make him tired that’s the drs reasoning so if a pill would make him tired more so than why is the dr suggesting it now ? chemo that will make him tired and sick.
I’m just trying to see what worked for other people I know everyone’s cancer is different it may be called prostrate but it has many different strains of it.
Thank u for ur time and could u give me the name of the dr that would give me pain meds for our backaches?
It looks like my analogy with back pain failed miserably in practice, although you clearly understood what I was trying to say.
As for the doctor's initial recommendation of ADT and no chemo — it's standard practice, and for good reason. Your dad's response to Zytiga is not typical (although not rare), and the doctor had no crystal ball that his health would degrade significantly from it. And/or, if the doctor DID have reason to suspect that your dad's system would be weakened considerably by ADT, he might have guessed — perhaps accurately — that chemo would have killed him, or sickened him so badly that quality of life (QoL) was intolerable. As it is instead, he's had two years of survival with diminished QoL, which is not bad for an 80-year-old with metastatic cancer.
As for the doctor's recommendation of chemo rather than Xtandi — I'm mystified. Standard practice would be Xtandi first, then chemo only when it fails. But perhaps there are metabolic or genetic reasons we don't know. You might consider asking him why, in his opinion, bypassing Xtandi is a good idea.
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Finally, comparing prostate cancer to other kinds of cancer goes only so far.
(1) First off, the existence of PSA makes it easy to learn with near-certainty that the cancer has spread long before any new tumors have grown so large they can be imaged; most other solid tumors require imaging.
(2) Secondly, ADT (hormone deprivation) works very well systemically on most men's prostate cancer, at least for a while. Other cancers are treated locally with surgery and radiation, just as prostate cancer is, but the cancer becomes systemic, chemo is pretty much the only option. ADT is far less harsh, and so it is offered to most prostate cancer patients first, keeping chemo as a last resort.
My father had a prosectomy at 72. I saw him only once after surgery.. Very weak he was. Now 20yrs later I feel bad because he passed 2 yrs later from a clogged artery. I did not understand what he was going thru with PC. Now I do understand.. These treatments can be hard on a young man, let alone an 80 yr old. Prayer compassion and love is all we can give ..My mom is 90 and 1/2 . That how she says it.. that 1/2 is important.. peace to you and your father..
True for some, but definitely not all. My husband experienced only mild fatigue and didn't miss a day of work during his infusion chemo (Taxotere).. Zytiga affected his liver function in just four months.
Good point, and thanks for reminding me always to specify that what is generally true for a cohort of men might be quite different for one particular individual.
We all get bogged down in our individual experiences, I believe. It takes a village to keep us all straight, and when we do that, we're providing better information to others, especially those new to PCa and this site.
Has the procedure changed? Is surgical removal of the prostate not the norm anymore? My PSA was 5.73 with gleasons all 9s and they did a robotic prostatectomy. I was 54 (2014). In retrospect I wish they had suggested radiation and/or chemo and then ADT. They thought they were going to get a clean removal...but with blood in semen you would think that, that would have been a huge clue as to advancement of cancer...clearly growth had invaded seminal vesicles.
So far as I know, the choice of primary treatment was and remains the patient's responsibility in the marketplace of possibilities.
Urologists, who tend to be urosurgeons, have long tended to recommend surgery. Many of them behave badly (in my opinion) by providing diagnosis and recommending surgery — sometimes even scheduling surgery — in the same visit, without giving the patient proper time to recover from the shock and start educating himself on other treatment options.
Although I think any fair and objective assessment of the current treatment landscape would conclude that overall outcomes from surgery are at least equaled by overall outcomes from radiation, books continue to be reprinted from ten and even twenty years ago, and articles from old sources continue to be recirculated, and so the public is largely unaware of the major advances in radiation outcomes compared to the minor advances in surgical outcomes. The term "gold standard" is still often used, not because surgery is still the gold standard, but because authors of 20 years ago used the phrase.
That said, practice has been changing, slowly.
In a case of widespread Gleason 9, it is unusual nowadays, although not unheard-of, to recommend surgery. The various nomograms and clinical comparisons agree that, for most men in such a situation, surgery is unlikely to be curative or even efficacious.
But a patient who is not well-informed about the many different forms of this disease and the many different treatment options is generally not prevented from making a suboptimal choice. In support groups, I have heard many men say, "I just wanted it out of me!" without realizing that their mental model of prostate cancer lacked nuance.
Agree. In retrospect...I would have not had surgery. The lack of a prostate and the inability to ejaculate has ruined me psychologically. The lack of testosterone alone has been enough to emasculate me. Prior to diagnosis 4 yrs ago I was a health active and sexually active male. Now...I can't even imagine being with another person sexually. I've been mutilated. They insisted that the surgery had the potential to save my life. They were sure...based on bone scan (team at Dana Farber in Boston) that there was no metastatic disease and that a clean up with rad and chemo would allow me to live a normal life post recovery. And here I am 4 yrs later with no life and battling mets in pelvis and horrible treatment side effects. It is hard to not want to just die at this point. The side effects from cancer treatments and pain meds and pain from mets and slowly driving me crazy. There is no break from the constant physical misery. And also dealing with a partner who is having a healthy and enjoyable sex life outside relationship. Add that to the list.
I, also, would not have undergone surgery if I had known then what I know now, although my circumstances are different from yours. My then-partner of 20+ years (now my husband of nearly 32 years) was supportive and loving. But, like you, the change in my sexual function caused me to feel mutilated and humiliated.
In this card game of life, you and I have been dealt a few really bad cards. I am grateful for the other cards I've been dealt as well. My focus now is on playing the entire hand to the best of my ability. Yes, I'm not the strongest at the table, and my position is getting weaker, but for me the point is to participate.
I envy you. My partner is supportive in some ways, but he looks for the advantage versus what he would stand to lose in the trade off. I've decided to leave him and move back home to New England. I have no support system here. Although I am envious I am also happy for you and glad you have a man who loves you that much. Thx for communicating and following.
When I hear you say in Retrospect” I say , “ good I didn’t have a prostectomy. It wasn’t even an option considered in the condition that I was in..
The problem with many in our American society is the belief that doctors are god and know all..
I believe if they think it’s contained inside the prostate , then for sure surgery , but then human error or pc just can be hiding or can be missed or not visible. No one solution for all because we are all so different. I agree with you. That was a huge clue.. just goes to show us that we’re all human and make mistakes. My friend did the da Vinci and his colon got nicked , almost died . Several surgeries and infections. He settled out of court for $50 k . Because his nick name is lucky ,one eye,a missing finger,a lot of body damage due to working construction his entire life . He took the $50 k because he feels so unlucky that he most assuredly wold lose and receive nothing. I think he should have received much more for the damage done..He’s good now, six years later no adt or Psa...he’s a survivor..
I can't quite agree with your "for sure surgery" comment.
There are many reasons that even a man with locally confined disease might prefer external radiation, brachytherapy, primary ADT, or even treatments like HIFU or cryotherapy.
It is quite possible (in my view, quite likely) that many of the current various radiation options are already superior to surgery in terms of outcomes. But the clinical data to support such an opinion won't and cannot be available for many years, until sufficient time has passed to compare a surgical cohort to radiation cohorts.
Also, let's not forget nontreatment with active surveillance is often the best way to deal with a low-Gleason disease, especially if life expectancy is less than ten years because of co-morbidities or age.
I think they opted foir surgery due to med family history. My dad died of metastatic cas resistant prostaste cancer. It was very aggressive. It spread so fast as mine does. If there is,any fault here it lies with my PCP. She kept telling me I was fine because I was so healthy even though PSA was doublingcheck up to check up. I was very diligent. I'd ask about PSA every visit. I even told he that I was urinating more frequently...but she would do a rectal and say..."you're fine"...and she knew about my dad. I should have insisted on seeing a urologist at the first change in my PSA. Buy...I w asnt educated enough re PC and I should have been. That part us my fault.
You are right , nothing is for sure . Over opinion on my part. Hope you are also correct in RT because that’s what I’ve done.. I had Gleason 8.
Chemo isn’t that bad, considering the alternatives. I was diagnosed it Stage 4 metastatic (bones in pelvis and ribs) prostate cancer at the end of 2014... I started immediately on Leuprolide and had about 6 months of chemo at 3 week intervals. It wasn’t great, a lot of fatigue and loss of hair, etc. But at the end, my PSA fell to below detatectiona dn a new bone scan showed good improvements! I’m still on leuprolide (doc says it will be lifelong), and it has its drawbacks for sure - fatigue, mental acuity, hot flashes, no sex life, etc.), but again at least things are stable with the cancer. I’m also taking a lot of supplements now turmeric, grape seed, etc. So far so good.
If you don't mind saying, which chemo did you have?
The most usual is docetaxel (=Taxotere), and I'm now starting to hear from several guys that's it's not so bad, especially compared to things like cisplatin (=Platinol).
I had a three-month experience with bevacizumab (=Avastin), which was OK except for the skin rashes, and a six-week experience with low-dose cyclophosphamide (=Cytoxan), which was completely unremarkable.
I had docetaxel, within a few weeks of diagnosis (I already had mets when I discovered I had prostate cancer). Its no picnic, I couldn't work and felt pretty crappy a lot of the time, but you do start to feel better ate the end of each 3 week cycle, so its not all bad. Fatigue is the worst. And in my case I developed neuropathy particularly in my toes, which I'm still having problems with a couple of years later (quite painful). But again, the chemo is mostly short lived in the larger schedule of things, and from what I understand, better to get it up front with ADT. Best of luck.
Still a kid! Life ain’t over yet , you’re going to make it over the hurdles.
See my reply to Paul C2. Standard practice (in Alberta where I live). Is ADT and docetaxel (chemo) together. Studies like the STAMPEDE trial have shown this to be more effective than each therapy on its own. I’m 60 now, was 58 when I had the chemo, and continue on ADT. Life is good so far....
The new approach is early Chemo with ADT--Doc. is following most recent protocols.
I thought we would see how the Lupron worked first. Chemo takes so much out of you.
Surprised That Casodex, is not being added to the Lupron---for what we call ADT-2--and for that matter a consideration for Avodart as a 5-Alpha Reductase Inhibitor---which we would call ADT-3, which blocks the formation of DHT--a highly prized consumable for PCA cells. Just IMO thoughts.
Im in Maryland also Devtony. What part are you in
You should try to get a consult with someone at a research hospital. Maybe Johns Hopkins? They have an excellent cancer center. This oncologist would not treat you on a regular basis but help to provide an overall picture and consult every 6 months or so. Your doctor should be happy to have this support. If not - get a different doctor. This has been such a great thing for me and my husband. We work with Dr Small at UCSF (because that's the closest to us -- at 2500 miles). At first diagnosis he gave us a great overall picture of the various treatment plans and when they would come.
So -- Casodex + Lupron + Xgeva (to counteract bad effects on bones from the Lupron). See what happens and/or if you have aggressive high stage IV -- chemo with Taxotere is a newish treatment. Look up CHAARTED study for more info. My husband was otherwise very healthy and did well on the Taxotere. Tired, lost hair, but not much else for side effects. It's not known for nausea. Standard treatment is 6 doses 3 weeks apart. As far as chemo goes, it's on the milder side. Each person is different with what's going on. The theory is to hit the aggressive cells early and hard. The CHAARTED study had very positive results.
Then stay on Casodex/Lupron/Xgeva until signs worsen. For my husband that was about 18 months. Then he went on Xtandi. He's done well on that (2 years) but it's building up, we think, and putting some stress on his body, and his PSA is creeping up.
Unless there is a reason (other health issues) not to do early Chemo, as someone else said -- that is now the standard of care for advanced and aggressive prostate cancer that is post-surgical (not eligible for surgery or radiation treatment because it's spread beyond the prostate region). My husband along the way also did Immunotherapy (Provenge) and RA223 (Xofigo). It seems to have all contributed in a positive way. Hard to say exactly but 4 years from a grim diagnosis, he's doing pretty well! He just rode a bicycle century in September.
As for pain -- try seeing a Physiatrist (orthopedist who does *not* do surgery) and/or a pain specialists --> Palliative Specialist. These should be MD/DO's who specialize in these areas. Also - make sure you are seeing a Medical Oncologist for the Prostate CA, and not a urologist. Once the Prostate CA gets to an advanced stage, the urologist is not as fully informed.
It's a lot to process. Take your time and be your own advocate -- get answers, understand why the recommendations, and if the rationale isn't good enough, find out more.
Best wishes to you as you sort this out,
I am a rare contestant in the forum 1/2800
I have done Vernon Johnstone baking soda/honey (I replaced molasses) for 5 days. And currently tweak his version to my Urine&saliva pH 7.2-7.5 Protocol.
You can then decide for yourself ie if you can check out on me more.
I was to highlight that Vernon Johnstone had 2 months of treatment using Finasteride & Casodex which brought down his psa from 22 to 5.8
His 1st Diagnosed Stage 4 with metastasis to lymph nodes & bones is similar to you and me. Yet with his 12 days try ( he termed it as Dancing with Cancer was a success as I think this is 11 years back and he is still alive.
I am excited to this days for being pain/fatigue free and also recovered and able to perform sex ( dry ejaculation ) and eat/feed quite liberally.
So far my mischievous eating indulgences and sex is holding on a very strong footing.
I had credited it to my kind gesture when I donated $4000 to the Council of Deaf & Blind and I am being rewarded/repaid.
Thank for your attention and patience.
Roland (Honorary Doctorate????)
I believe Vernon Johnston has passed on. Please post your psas , so we know how your therapy is working. Chris from Chris beat Cancer had surgery first and decided not to do neoadjuvunt chemo.
Thanks for the update and I apologise for my mistake.
So Vernon Johnston had his "Dancing with Cancer" on 17 March 2008.
His passing at age 81 is on 2 December 2016.
Thanks again Dan for letting me know.
Very much appreciating.
I am planning to do my next Blood & psa in about 6 weeks time. My last checked was 9 January 18 and it is 29.64
Currently I still encounter haematuria so that is why I delayed and I was disappointed when my request for Nuc Med Bone Scan on 19 January 18 was knocked back.
I have a bone scan and ct scanned followed up with consult this week, I will say a prayer for you to get good results as well as others.
A psa of nearly 30 does little to validate your approach. We all worry that you will look into more conventionally accepted treatment only when you feel pain....too late for reasonably effective treatment. Prostate cancer is a silent killer
Much appreciating your concern.
I have come to rely on my CT Scan done on 19 January 18. I was also then hoping to get Nuc Med Bone Scan done on the same day but was knocked back as my referral doctor cannot be contacted. So basing on the CT Scan report I am on a status quo ( no further worsening and progressions so I am happy as it is. To add further the Radiologist has put up a rubbish/unclear report as my other Doctor's opinion.
Thanks again for your concern as I am using my pain as the determination factor and I am in no pain.
No pain... That’s great!
With your (Honorary Doctorate????), I have a favor to ask.
When we get a new member, like Devtony, with a PSA of 800 and Gleason of 9, looking for medical guidance, could you please refrain from overloading them with your Vernon Johnstone baking soda/molasses treatment?
Those of us on this site frequently understand that you have made your choice and we applaud your $4000 donation.
Newcomers with serious disease may become confused by your reply to them. Give them some time to get over the shock of their diagnosis before you offer your personal approach to treating your cancer.
Think you can hold back a little for newly diagnosed?
Best wishes. Never Give In.
Just to clarify yycandy had claimed using baking soda in combination with Lupron and now is in remission,
Although Vernon Johnston had past away since Nov 2014.
I have highlighted that he in fact was on Finasteride and Casodex for 2 months (having his PSA reduced from 22.3 to 5.8) before his famous 12 days baking soda/molasses treatment.
So he was in remission by both conventional & baking soda/molasses therapy,
The cancer always recur if you are careless whether it is conventional or alternate/natural therapy,
So what ever happens today can awefully wrong in coming days.
I wish you all the best,
I announced I am taking a leave of absence for the next 6 weeks pending more test results from my progress.
Na, chemo isn't that bad. I started out just like you. Chemo does cause some collateral damage, it's kind of like a charismatic sociopath. Lupron wounds, chemo kills. your doc is steering you in the right direction. Read the link below.
... and you mean the cancer cells, not the person !
“Sociopath” I like that , but where’s the charisma?
You need to starve the PCa with the Lupron, Casodex and even Avodart and then kill as many with chemo. I did 15 sessions in 2015 and fasted 2 days before and had few side effects. GL7(4+3), PSA @ 840 with metastases to ureter lymph nodes. Now at PSA 0.5 - I got to 0.1 two months ago
See if you can start on Metformin:
Stay/get fit to offset ADT weight gain, mood swings, fatigue, and man boobs.
Eat heart healthy - low carb, fruits/veggies, whole grains, and lean proteins. Seafood 2/week
Check Vit D levels and supplement - I do 5000IU 2/day
My best to you - Randy
I chose Zytiga-Prednisone along with Lupron and am doing very well.
Zytiga has been very good to me, and I hope to postpone chemo for as many years as I can.
Thank you for all the replies,as you can imagine it has turned my and family upside down
Sorry to hear about your situation, but glad you found this great group of support, knowlege and first hand experience.
I would second or third the recommedations for early chemo. I did it myself with good results so far, PSA went from 463 to .2 in 6 months. But more importantly, I would point to recent studies: CHAARTED and STAMPEDE.
As for the side effects, I was afraid of them initially but they are very tolerable for most. I had some nausea, but not even bad enough to use my meds. Lost some eyebrow hair and my nails developed some small ridges and strange colors. No big deal there. No neuropathy, no appetite loss. In fact I gained weight.
Most people tolerate the side effects well so don't be afraid. My philosophy is aggressive cancer = aggressive treatment. Hit it as hard as you can and kick it some more when it's down.
Wish you well in your treatments.
I have always been a fighter and I do hate to lose, you all have given me great inspira tion. By the way I am in Maryland. I have 4 kids,wife my shepherd died last week. 17yrs great dog. I will inquire about the casodex.
I'm glad to hear you are fighter. Beware of treatments using what I call the "works for me" approach. A sample of one is no sample at all. I prefer the "it worked for them" approach that scientfically based trials use to prove whether something works or not. Just lost an old friend who was on "alternatives". Apparently, he was the only one that thought it was working while those around could only watch in despair. Don't let it happen to you.
I lived in Springfield as a child.. Sorry for your Shepard.. We got the puppy in the photo 16 months ago. That’s lulu...Incredible love we have with her. Is that a pet iguana?
Wecome to the group, It is a good group with lots of information. As others have said , The Dr is following current protocols of ADT and early chemo. As Nalakrats said, I too would ask about casodex being added. There are ways to mitigate the side effects of chemo, You can look back on my post when I was doing chemo, It can be found by clkicking on my name. I wish you the best, we are all here for you with any of your questions or concerns.
Hi Devtony. I myself am 62 and Dx in September. Gleason 8 stage 4 with 7 bone mets. I started with lupron and found a great med onc at univ penn. My treatment is lupron , Zytiga with prednisone 5 mg. psa was 35 . My last blood test a week ago was .03. Doc has had lots of great results with some patients with some still on Zytiga after 5 years. Can only pray for that. I am in good physical shape i guess. Side effects are hot flashes and some joint pain. Except for muscle loss and ED i feel good. My Doc wants to keep Chemo in the arsenal of weapons for later. I am 5 months in so very new at this Bastard of a cancer. Seems most docs call for chemo first but what do i know! I don't post to often because I'm just trying to learn from all the great people on this site. It's a great place for positive feedback. Good luck Jon
I am one of those patients — I've been on Zytiga since January 2013 for my Gleason 9=5+4 stage IV.
Hi Paul looks like your on same treatment as i am. Just wondering if you don't mind was that your first treatment. Also i guess you do Prednisone as well. Sounds like your doing great. Hoping for same results .
First treatment? Oh, no.
I've started with surgery, followed by clinical trials, EBRT radiation, ADT with Lupron, SBRT with light immunotherapy (Leukine), light chemo (low-dose cyclophosphamide), and ADT with Zytiga — with prednisone, of course. And this doesn't count various experiments with diet and supplements.
And yes, I think I am doing pretty well, all things considered. I'm quite happy with the life I currently have, and my gratitude for all I have vastly exceeds my sadness for what I've lost. That was then; this is now; and what is yet to come is largely what I make of it.
Thanks for reply Paul. Here's hoping Adt and Zytiga gives you many years of a happy life.
How long have you been fighting the beast? I added Zytiga and prednisone to my Lupron in November, 2017.
My diagnosis (Gleason 5+4) was in 2007.
Ten years later, I have a new job, two new grandkids, a new passion for an avocation, and a very good life with my spouse of nearly 32 years.
Paul it is good to hear great news regarding both your journey and life. Bless you.
I had a Gleason of 5+4, PSA of 68, extensive mets and am 43. Diagnosis was seven weeks ago. I was put on Firmagon immediately, and have been taking Zytiga with prednisone for two-three weeks. My specialist advised holding off chemo as the first treatment in my case. So far side effects are manageable, hot flashes, bone/muscle aches, tiredness and loss of sex drive.
Unless things have changed very recently - Zytiga or Xtandi should be used once a person is castration resistant. First line of Casodex/Lupron +Xgeva (for bone side effects) plus possibly chemo (CHAARTED protocol). Then see if chemical castration works to lower PSA. Jumping to the post-mcrpc (metastatic castration resistant) drugs might shorten your weaponry for fighting. This is how Eric Small explained to us -- using a "pony express" analogy. Ride each horse as long as you can. Zytiga and Xtandi will eventually fail, and then you are way beyond Casodex Lupron (though Firmagon seems similar to Lupron?) and there are very few treatment options left (as of now, although this can change).
My husband (age 52, PSA 40, stage IV aggressive and advanced mets into the spine and ribs as well as hips) started on Casodex/Lupron +Xgeva, + Taxotere chemo (see above post - minimal SE). (Note that PSA elevation is the marker, not really how high -- that seems to be an individual thing.)
His PSA dropped and he was good for about a year. He also had Provenge (immunotherapy) along the way and RA223 (though that was harder on him than chemo). He is now almost 4 years from diagnosis and doing pretty well. He went castration resistant about 2 years ago, and *then* started on Xtandi. His numbers are just starting to creep up; bone scan is stable (after some reduction in mets earlier); some lymph nodes are appearing in pelvic region. His only remaining treatment is to try Zytiga (which may or may not be much different from the Xtandi) and possibly some tumor specific treatments (but he is not BRCA, no genetic markers that we can find yet). Our anxiety -- what can we do now? We've gone through them all (save one). Thus -- consider stretching out your treatments - in discussion with your doctor of course.
From some of the posts on this thread, it seems like some docs are jumping to the "hot new drugs" without really following protocol for them? As I started this post, my very clear understanding was that Xtandi or Zytiga were for castration-resistant PCa, not a first line. However, I freely acknowledge that prostate cancer treatments are changing rapidly now (excellent news for everyone on this site) so maybe the protocol has changed for these drugs, maybe esp. for super high PSA.
Devtony and everyone posting here -- best wishes with treatment. Knowledge is power.
Your understanding is correct, Caring7, but that protocol has largely been a function of administrative hoops. As the effectiveness of Zytiga becomes more and more apparent, more and more pragmatists aren't waiting until earlier treatments fail.
What do I mean by "administrative hoops"?
Because prostate cancer is such a slow disease in most men, and because of financial pressures to receive FDA approval as soon as possible, it makes financial sense for Pharma to restrict clinical trials to a very sick cohort.
• If a cohort with a three-month life expectancy survives an average of four months instead, it's sufficient grouns for approving that med for people who are that sick.
• But testing patients who are less sick is less easy: If a cohort with a five-year life expectancy survives an average of eight years instead, the result might not be established until four years into the trial, by which time a competing company might have already brought a different molecule to market, making the previous five-year baseline obsolete.
Savvy oncologists with large numbers of advanced PCa patients can sense a year or three in advance what's likely to have broader widespread usage and what's likely not to pan out. In conjunction with savvy patients, they can often pull strings to start regimens that aren't part of the official protocols.
And I don't know but that the FDA is moving rapidly on approving Zytiga and/or Xtandi for earlier presentations, and may have possibly permitted some physicians to try it out in circumstances that same to them right. They are not always the glacier-slow bureaucracy we sometimes think of them as being.
This makes sense - and like I said, not sure if/how things have changed. I do think there is perhaps something for the pony express analogy. But everyone has an individual fight, and for me, just being aware and getting as knowledgeable as possible is really the key, and most important thing. At this point, my husband is way past all these "what ifs" so I haven't stayed up with it. If I have a chance, though, I'll ask the research oncologist at UCSF what he think about early Zytiga/Xtandi, and if I find out anything, I'll let the site know. This guys is one of the writers of protocols for national standards of prostate cancer treatment, so I trust his judgment and opinion pretty well.
Thanks for your informed reply -- and yes, I am a little surprised that insurance is going for it. As my husband takes his Xtandi each day, we're like, there's another $300! (thankfully covered by insurance).
Wow sounds expensive.
Sooooo grateful for good health insurance!!
Below is a link to a recent article related to your comments.
This seems like things are changing faster than ever. For all of us I really hope so.
easeytiger yes my Med onc says trials confirm adt plus zytiga is a front line treatment with good results. I know a few men who are 5 years in and this is there first and only treatment.
Firmagon is $costly and I believe very effective. My first shot was firmagon the next Lupron.. I’d bet firmagon is the best. Dr told me $10k per round.
That's not good I am paying myself. I want to say I am so glad to have found this forum. I was feeling a little alone. Family and friends are great but they don,t really know what it's like. Your information has been well received. My family is also glad I found it. God bless you all
nobody knows except those that personally witness it.. my guy friends they don’t want to even hear about it. Nobody does. We can’t let this disease define us. We are more than that..Our systems are permantly chemically challenged.. altered , only men get this disease, so much for being macho.. That’s out the door..
Golfer Frank here l was diagnosed with stage 4 prostate cancer 13 months ago being treated with lupron n zometa (a bone strengthen) no chemo r surgery play golf 4 to 5 times a week 76 years young doing so well Doc gives me 6 to 8 weeks off from 3 month Lupron injections get my manhood back for that period which pleases my wife again. The point is no invasive surgery r debilitating chemo high quality of life with exception of memory,focus issues, n hot flashes. Just sayin chemo n surgery not all ways the way to go
You are correct. No one plan fits all . We all need a bit of luck also. Congratulations on your status . I too did neither chemo or surgery, and I’m pretty good now, yes all of the side effects but no severe pain. So many variables for all of us.
It’s always helpful if you post your profile ( ie psa history , how and when you were diagnosed, symptoms, treatments) so we can better help.
I was diagnosed in November 2017, no symptoms, exam that led to biops y, had full body scan which showed Mets in 5 places. Chesapeake urology found it. Gbmc for oncologist . Lupron started 1st week january with casodex want me to participate in clinical trial sponsored by baer pharmaceutical
Feel free to click on my profile to see what I've done , none of the treatments are a walk in the park but they sure beat the alternative. Learn all you can, get an oncologist who specializes in prostate cancer and keeps up with the latest treatments, and be your own advocate. Don't be afraid to ask questions or provide ideas for your treatment based on what you've learned. Good luck!
We all should follow your advice.
I am on ADT along with Chemo (Docetaxel and Carboplatin). That has worked for me during the last year. I expect to continue this year.
Devtony my stage four was diagnosed 17 months ago. My doctor went straight to the chemo and chemical castrations, ha 6 treatments. The chemo wasn’t to bad but the white blood shot 5he day after really put me down, since then I have been on Xtandi ,lupron and Xgeva. Feeling pretty good. Only major issues are loss of muscle mass and arthritis
I have those two also ..dammit
Fight fire with fire. Your best chance is now to kick its ass.. This is a new way of life for us.. After the initial shock fear anger and depression you make these treatment decisions with intrepidation.. Don’t gloom and doom like I did. I wasted a lot of my diminished energy getting bogged down in negativity..Can’t say it’s easy or fun but you must do whatever it takes to prolong and improve your life. Once you’re on the other side of treatments.. then when in good standing no Psa then you ll be able to take a deep breath.. until then it’s stressful worrisome chaotic , nothing nice. It’s 3yrs for me under treatments and it’s taken me this long to feel a little at ease, I’m not going to die tomorrow god willing.. unless a taxi hits me. At first I thought “I’m dead” that’s it.. shock of a terminal disease. There is no cure for Metastatic APC no guarantees for any of us as you know. Priorities are reset.. It hard to enjoy anything while in pain and having mental anguish and turmoil. You have to fight this with all of you might now..The true mark of a man is not sexual prowess or physical strength..It’s the love we show to others,it’s integrity , honesty , loyalty, and mental strength to endure any hurdle that is threatening your life or those around us. This is a battle a test for our very existence.. I wish you the best of luck. I wish I had found this cite in the beginning.. knowledge is comforting,,any question can be answered by years of experience.. One gentlemen has been riding this train for 20 yrs and still going. I’m now in a good zone.. Make the most out of your life.You will be rewarded for the suffering by adding years to your life. We Accept our lot give it our best and that’s all any of us can do ..A lot of prayer,keep the faith and never give up .
Yep. They said I had a 50/50 chance of 5 years maybe more. So I decided just to go ahead with life and try to live it without fear ,just the joy of being alive. 😜😜😜😡
That is the goal .. Glad you are there.. I’m feeling better and striving for total enlightenment.. haven’t quite made it yet but in the past 2months My appreciating life had jumped up..they told me 50/50 I’d survive my initial treatments....so it’s all kind of gravy for me. Thanks for the feedback .. it helps...
Comme ci Comme ça
Good Luck and Good Health.
j-o-h-n Sunday 01/28/2018 7:43 PM EST
Doc did not suggest surgery?
As many cancer patients, as so much advise.
My numbers was basically the same as yours two years ago. Gleason 8, PSA 901. Today 0.64.
1. Follow your oncologist first line treatment. You are now on Lupron, I am on 3 months Lucrin.
2. Eat stuff that kills cancer. Do your own reading and research. Eat food like sweet potato with skin and all. Stay away from red meat. Keep to chicken and a little bit of fish. Stop drinking milk. In other words, eat food that will bring your body's pH above 7.
3. Follow a good and well established second line treatment. For 18 months I used Coartem. Artemether is a first line treatment in China. You can also used capsaicin (cayenne pepper) together with lycopene (tomato). But do not drop your first line treatment. Drink your lemon juice with ginger three times a day.
4. I was diagnosed with tubular prostate cancer, much faster and more aggressive than normal prostate cancer. After 18 months I stopped all treatment for three months. The PSA was 0.23. It went back up to 7.89. I started again with Lucrin, and pushed up the capsaicin to 3000 mg a day. A MRI showed that my phase 4 cancer cleared up and is now only in the prostate. I am working hard with second line treatment, my oncologist is extremely happy and surprised with my condition.
Good luck, God bless and kind Regards Thinus Coetzee
Lupron is palliative teatment only. If that's what you want, then go for or. It's your call. HOWEVER, if you want to try and kick thus bastards butt, then I strongly suggest, Lupron with Chemotherapy. As one with Stage 4 fourteen years ago, I got very aggressive and started a chemo trial within six weeks of developing mets. Today, after stopping Lupron eight years ago coming in two weeks, will celebrate with undetectable PSAs. Do not fear chemo, esoecislly while the tumor burden is minimal and your body is strong. The old wait until as a last ditch treatment, is out of date and simply backwards. I wish you the best of luck in your treatment plans. Search this group or google "Gourd Dancer Advanced Prostate Cancer and you can read my story and treatment protocols. BTW, I take zero supplements or alternative treatments.
Ty my first chemo is friday morning
Did my first cyc le yesterday and so far so good. A l little funky in throat other than that doing okay,just waiting for the shoe to drop
Devtony, UCLA is doing a clinical trial with a new Lutetium 177 PSMA radio pharmaceutical. This supposedly will kill cancers in all mets, not just bone mets. It is also used with PET/CT to better image mets in the body.
Hi, my name is Lynn, my husband just had a cancerous lymph node remove, after chemo, radaition, We just were told it didn't work for him, so our oncologist didn't as of yet get the results of the LN biopsy back yet, but she is talking about more chemo, once a week for the rest of his life or if he qualifies from the results if the lymph node, maybe trying that Keytruda they advertise on TV or clinicial trials !! Sam, my husband is going to go for whatever is offered him. Please hang in there yourself and get all the treatment you can to best this. If you don't mind telling me what other treatment have you had before this,
Best wishes coming your way!
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