I am in a state of shock after 3-monthly visit to specialist yesterday. Brief recap.
Dx Oct 2017, less than a year ago, PSA 960 and extensive bone mets (alkaline phosphatase AP 2325). I was 73 then, now 74. Started ADT jabs right away and 3-monthly since, had 6 rounds of docetaxel from Jan to April. Nearly 4 months on, I have regained energy, walking, gardening, taking the usual supplements, etc, and feeling fine. PSA was down to 2.5 in March, 1.8 April, 1.9 May. AP had dropped to under 100, in normal range. So I had convinced myself that I would be OK for years yet, and was trying not to think about PCa but get on with life.
I was horrified to be told yesterday, at my first 3-monthly routine check, that PSA had risen to 10 and AP had gone up to 234, indicating bone mets growing. So already HRPC kicking in, was the chemo a waste of time, etc.
Can anyone give me words of reassurance, or must I reassess my life span down from 10 years or more (my optimistic hope, I admit) down to a couple of years only. So disappointing. Not much reassured by the specialist pointing out that survival is calculated from date of Dx, which in my case was quite late cos PSA was so high.
What next? Specialist has called for CT and bone scans before seeing me in late Sept to decide what treatment to propose next. Not sure whether scans will tell much that is new, given that the last ones were only 3 months ago after end of chemo. There seem to be several options, abiraterone, radium, etc and I wonder what has worked for you? Advice welcome
rpol
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I hope Tall Allen will see this and answer, as he’s really dialed in on treatments, but it seems to me chemo was not wasted. I think it has prepared you for other options. I’d caution that at this point the PSA and the Alk Phos are collectively one of three legs, the other two being (i) scan results and (ii) how you feel. Hopefully, you feel good.
I feel great, at least until yesterday! At least 30 mins dog walk daily. Swim several times a week. Regular gardening. Been a great summer, no rain for months (this is England, I should say!). No pain, doing much more, maybe too much.
Don't give up hope! Zytiga (abiaterone) plus Lupron or digarelix, plus avodart, plus metaformin (plus the requisite prednisone for the Zytiga) are what we are looking at. There's a TON of different options out there, and the fact that you feel great and are still active works in your favor.
I was diagnosed in 2013 (age 67) with metastatic Prostate Cancer and extensive bone metastasis. My PSA at diagnosis was just under 1700 (not a typo). When my PSA started inching up after nearly four years on Lupron (mostly Zoladex) but also Firmagon, I was offered a choice between Zytiga (abiraterone) and Xtandi (enzalutamide). For various reasons I chose Xtandi and my PSA dropped to almost undetectable. I have now passed the five year milestone when I thought I only had five months so don’t give up. A positive attitude is critical so is a good support system. Get a good oncologist and get educated about the options available. Don’t be shy about volunteering for a clinical trial. You might not be able to beat PCa but you definitely want to induce a durable and lasting remission.
When PSA started climbing at only 5 mo., added xtandi, nailed PSA but regular dose was driving my QOL down to untenable levels. Cut dose by 25% and got lots better. Try zytiga or xtandi and you should have lots more life ahead of you. Don't be afraid to alter dose if side effects are debilitating.
There are many good choices to discuss with your oncologist - Zytiga, Xtandi,Xofigo, Jevtana, and Provenge. Many more in clinical trials. If it were me, I'd push for Xofigo and Provenge simultaneously, and after that Xtandi followed by Jevtana. Also discuss somatic genomic testing - you may have a rare type of PC that may be discovered with a tumor biopsy.
many thanks to all who have replied so far, and especially to Tall-Allen for v helpful list. Xofigo and Jevtana are both chemo - pity, I was hoping to avoid more chemo. My notes say that Xofigo is chemo for bone mets with pain, but I have as yet no pain at all. Maybe I can defer this. Provenge looks promising. My notes from earlier research say that Xandi is suitable if no chemo nor abiraterone done, but I have already had docetaxel. I will discuss these with my specialist but have to discover what NHS will fund
Xofigo is NOT chemo- it's a radiopharmaceutical. Xofigo is for symptomatic bone mets, but a wise oncologist might be able to get it for you early when it might do more good. It combines well with Provenge because it releases many cancer fragments into the serum where the activated T cells can latch on to them. The Provenge helps overcome any immune inactivation attributable to Xofigo - a win-win. if you do them at the same time - Provenge (3 infusions) and Xofigo (6 injections, 4 weeks apart) - you can move onto hopefully a long course of Xtandi or Zytiga.
Xtandi is approved for use before docetaxel, at least in the US. NHS may require Zytiga first.
Hi this is ricefarmer would you explain the t cell because got t-cell lymphoma in the army and want to see if t-cell in the army might have cause pc. thanks
I never know what to say to people about their doctors. Making people anxious about the quality of their doctor's care can sometimes do more harm than good and I apologize if that's what I'm doing.
Clearly, your doctor doesn't think your condition requires an appointment in less than 6, 7, or 8 weeks from now. But I bet that if it were him that had just failed ADT he'd do his best to be in a doctor's office the next day.
Did he tell you what he hopes to learn from the scans? He already knows that you're metastatic and he may already know from previous scans whether or not the cancer is largely in your bones. I'm wondering what he'll do differently based on the outcome of the new scans.
Is the doc a urologist? He shouldn't be. He should be a medical oncologist who specializes in prostate cancer, or at least in genitourinary cancers. I live in the U.S. and am not familiar with the NHS in England, but I'm hoping that there's some way you can get to see someone earlier and also be sure that the person you're seeing is the best one available for you. [Don't imagine by the way that everything is rosy in the U.S. Compared to the England, I think some things are better and some are worse, and much depends on the specific insurance you've got or, in an all too common case, if you have no insurance at all.]
I am a strong supporter of the NHS. Treatment free at the point of use is an excellent concept. But the pressures that result are huge, cos nobody likes to pay taxes. All the staff I have so far dealt with are dedicated, caring and knowledgeable. My oncologist is a PC specialist (returned recently from maternity leave) who knows her stuff, in a specialist PC centre. But stretched resources means delays, and there are several reasons, none of her making, why there is such a long delay until my next appointment. This is not ideal, but at least it gives me time to do my own research on possible ways forward, and finish summer holidays.
I'm glad you're in good hands. And contrary to my concern, it looks like you needn't worry about your doctor having a different approach to failing ADT if she is the one who fails :).
You have been given the best input you can get anywhere in the world. That said, the reality is not good, your initial psa etc. really put you on the end of the survival cycle, and you should not expect miracles to happen, given this bad news. My view is to get your affairs in order, make up a bucket list and live large, for as long as you can. Doctor shopping takes up huge amounts of time, money and energy, but if you get up to speed on what the boys have told you above, you can set up your treatment accordingly, i.e. take control. I again, do not like to criticize the medical staff involved because they have a very very tough job. It is not easy when you are trained to save lives, to watch us go down the drain by the pailful, not matter what is thrown at PC. That said, once you get yourself set up, as I am hoping that we do on this site at some point in the very near future, then it will be easier for those who follow.
So, good luck, rock on and love those close to you and get out and live large.
But the intention is good and appreciated. Affairs are more or less in order, bucket list written, but don't want to leave family sooner than I can manage!
I have no need to go doctor shopping. See my response to AlanMeyer. I do appreciate the need to take ultimate control of my treatment, and that is where this site helps enormously.
Billyboy I don’t know what you are yapping about. Miracles happen. A LOT. Rpol go get the book Radical Remission and read it. I have personally witnessed a good friend of mine who could not walk be healed and then has been walking and running ever since.
And remember it’s like riding a motorcycle, you go where you look.
thanks for the support, teamkv. I have that book, and have read and reread it. I've been looking up, but it is hard not to look down when doc gives you bad news.
I am not sure why I am responding to your insults. I deal with science, not fiction, not some hocus pocus outcome. I have and do my best to present the cold hard facts. I have reviewed thousands of cases of PC, and never once, did I see or have presented from a case of recurrent PC, where the patient was cured, not one. All sorts of other ailments, yes but not PC. In my view, you do a disservice to those who want to know the truth, the facts and make decision upon them, not pie in the sky. This might be hurtful to some, but I have seen far far too many place their hopes-and money into some fake cure of whatever, and when it goes bad, they are left with nothing. Our science guys on this site, are from around the world, they are up to date.
We are all going to die at some point, those of us with aggressive PC just have a better idea of when-to a point. Facing this fact, allows us to come to terms with life, living and making the most of what time is left. That is not to say to give up, but merely to balance the picture, because far too many poor souls, and probably all of us in this battle, have grasped at straws.
That is why I keep preaching to get things in order while you can, make up a list of things you want to do while here, and get on with doing as many as you can-whatever they might be. That is living with PC not letting PC run your life, nor some fake-no matter how good the intentions might be, to lead you off the course of reality.
Provenge doesn't have any good track record (4 months average, and that's questionable), and the apheresis may be detrimental. I am NOT a doctor, but we almost got sucked into the current Provenge-push because it's patent is expiring. You feel good, which says more than your PSA. Be smart, but definitely not cause for despair.
thanks, I will check that out. I have certainly noted that some treatments require, say, 3 months of chemo for possible 3 months extra OS - not worth it in my view, cos QoL awful during chemo.
We've gone with zytiga which is working for now but not quite as perfectly as we'd hoped. We did do a bit of Doctor shopping to find one expert that was willing to be a bit more aggressive. The current plan is to get the bone Mets in total remission and possibly radiate the prostate but I'm inclined in our particular case to think the testosterone therapy has some promise so we're going to start exploring that with the doctors. We found some wonderful caring professionals, but unfortunately encountered 1 world-leading investigator that was inclined to send us down a very bad path. Research money can really affect those decisions.
Also be cautious about assuming spots on a bone scan are actually Mets, it will show other kinds of bone changes too. We're hoping to get a psma - pet for more accurate picture when we get to our next decision point
Ask Doc about Zytiga,Eligard they worked for me lowered all concerned numbers to undetectable in one month, six month's now so far so good. Best of luck Brother . Never give up never surrender. Leo
thanks, I will check that out. I have certainly noted that some treatments require, say, 3 months of chemo for possible 3 months extra OS - not worth it in my view, cos QoL awful during chemo.
Sorry to hear about the monster , they told me that if I stopped at 6 rounds of chemo I could always go back to it. The Dx also put me on Xtandi after the chemo. Other than that. Keep on fighting don’t give up.
As others have said don't give up there are many positive options from the experience of others on this site.
However I suggest finding somewhere that can provide a GA-68 PSMA PTE/CT scan. It uses an agent that only binds to prostate cancer cells anywhere in the body and works with PSA as low as .10
It may show cancer lesions that standard Bone and CT scan won't see. That information may be very useful in determining the next steps.
The androgen deprivation and Doxatacel will only work for so long until the disease starts to become castrate resistant.
As Tal indicates there are plenty of additional 'top ups' for the androgen deprivation with zytiga and then Xtandi both of which are not actual chemo as far as I am aware as they both reduce testosterone rather than kill cells that are dividing.
Zytiga is an obvious next choice and Provenge for immunotherapy.
With the bone mets then Xofigo should be considered as I understand this isn't chemo either.
I am in about the same stage with my treatment - although only 57 so I really need further clinical trials in the UK as there are none
at the moment and even immunotherapy/provenge is not available after chemo has been given!!!!!
My next alternative is going to be Cannabis oil - not CBD - but thats going to be a personal choice given the legality.
"I reassess my life span down from 10 years or more (my optimistic hope, I admit) down to a couple of years only."
Hmmmm .. yesterday I predicted that I would be dead today...and low and behold I'm still alive (i think). So PLEASE stop those pessimistic thoughts about your life span. You'll be around for many many years... so many that your wife will eventually want to kill you. So if she offers you mushrooms to eat..just tell her "i'm good".
hey j-o-h-n, don't misquote me. I actually wrote "must I reassess etc". It was intended as a question, and I was hoping somebody would say NO! Nobody has of course, cos 10 years was always on the optimistic side. But I am naturally optimistic, and dont like to be told "get real". But I do have to be realistic and speed up plans on my bucket list.
My testosterone has been 0.4 for over 6 months (normal range 10.0-27.6), so yes I am castrate! And first thing I was given after Dx was bicalutamide, before switching to Leuprorelin. Thanks for checking, Joel
I have added what's cheap. I'm not a doctor. I am Gleason 9 doubling 5 months. Stage 4, 3 or 4 bone mets , a few slightly enlarged lymph nodes, stage 4, M1 , PSA 31at diagnosis. I know not the same as u. I did an insane amount of supplements during Lupron alone(w 3 weeks Casodex for flare,) the Xtandi added after 2.5 yesrs. 7 years out I'm age 66. I finally settled on Zyflamend for prostate for a supplement. All the supplements may have been a waste of time , who knows. I also took aspirin , the full amount for like 2 years ,taken with gaviscon. I'm not recommending this. It caused sinusitis. I take Ibuprofen now. I'm still trying to get celebrex. Inflammation and signalling play a big part in prostate cancer. Now that I'm still NIH in a clinical trial (on Xtandi) I can't take supplements. I don't know if u are still working, NIH will pay for your flights back and forth, cost of food, (1/2), some of the lodging cost and the medications. I used to go back and forth every month , now it's every 6 weeks. Every 12 weeks PET scan, cat scan, and bone scan all government paid for...maybe check out NIH. There are other clinical trials at other large hospitals. Keep fighting , they are discovering new things every day. Good luck!
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Prostectomy trial or not?
bone scan following chemo
Reaching Castrate Resistance? Increase in PSA,ALP.
Hormone Therapy failing?
When to do a CT scan?
