I'm surprised by the many posts I am seeing on this site from stage 4 prostate cancer patients who are undergoing chemotherapy.
My surprise is because my doctors said that at my stage (4, Gleason 8, 4+4 with tiny non-painful metastasis to pelvic and lower abdomen area that are only visible on the Pet Scan) the only options were radiation or ADT. Neither surgery nor chemo were ever on the table for me.
Since I am scared of potential radiation outcomes (burns that never heal, generating new cancers elsewhere, ...) and I do not tolerate ADT at all (at least the 2 that I've tried so far), Chemo might be something I could consider especially if I combine it with fasting 3 days before and fasting for another 24 hours after the chemo. This apparently protects the healthy cells from the chemo and does extra damage to the cancer cells.
But I am wondering why some people here that appear to have a disease as advanced as mine are being offered Chemo but not I. Maybe it's a country thing (I live in Quebec, Canada)? I'd like to bring up the topic when I next see my oncologist but was wondering if anyone here maybe has some newer/better/healthier chemo name to suggest so I can in turn check it out with my oncologist?
Thanks,
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Mascouche
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The side effects you mention, "burns that never heal, generating new cancers elsewhere" are so rare with today's radiation systems that they should not influence your decision. See that you get your prostate and the detected mets treated. It is more likely to get lasting side effects from Chemo, such as peripheral neuropathy causing numbness, tingling, and pain, than the side effects you mention for radiation.
I had the chemo. Neuropathy I can live with with a little help from Gabapentin. I wasn't a good candidate for radiation acct widespread spider web of cancer against colin, bladder, etc. Peripheral damage was judged to be more dangerous than RP and chemo. If contained to prostate new radiation treatments look quite promising.
There are so many prostate cancer patients getting radiation. Most without without SpaceOar. You can ask for it and discuss it with the RO, maybe they can get it for you.
You write that you cannot be treated with Lupron nor Casodex 150 mg. So you do not have options. A Chemo will not cure you. You will be in about the same situation you are in now in about six months after the Chemo. Allmost all patients continue with Lupron after the Chemo which you do not want to do.
I am not completely against ADT, I have had back luck with the first two, especially with Casodex. Someone suggested that I look into estrogen patches to accomplish something similar but with possibly fewer side-effects aside from (temporarily?) growing breasts.
The Casodex was a bust for me so went to generic zygtia and is bringing down the psa number, have had chemo almost 3 years ago and nothing to it, do not be afraid of chemo. The generic zygtia (arbitrone ) is not giving me any side effects so far, I take it first thing on an empty stomach,eat about an hour and half later with the prednisone with my supplements.
"Casodex was a bust for me" - you had Lupron and the PSA value started to rise. So you added Bicalutamide to Lupron. What you can hope for in this situation is to stop the PSA value to rise further or go down a bit. But the effect is nowhere near that of Abiraterone.
I mainly suggest Bicalutamide when you had surgery and radiation and your PSA rises again slowly. Then you do not need to start with Lupron for the rest of your life, you can use Bicalutamide for quite a while to stop the PSA value from rising with just a few side effects.
Patches are currently studied in one arm of the STAMPEDE trial in the UK. If you would do it in Canada, I do not think your oncologist will support you with this.
If you just want to try the patches to avoid side effects from Lupron, you can achieve pretty much the same effect by adding fewer patches than used in the STAMPEDE trial to your Lupron shots. The side effects caused by Lupron are mainly caused by the suppression of estrogens which again results from the suppression of testosterone. So if you add estrogens using patches, most side effects will be mitigated.
SpaceOar is a new option not used by many. Do the radiation treatments with a full bladder. This is a natural way to help create more spacing between the prostate and the colon.
I am a G9 PSA 350 multiple mets lungs and hip. I was put on lupron late 2016 and started chemo early 2017, being Docetaxel . My PSA dropped quickly and ended at 0.018 by June 2017. I started Zytiga in the fall of 2018 as my PSA was climbing.
You can access ASCO and NCCN guidelines and Stampede study to perhaps understand the doctor’s decisions. It seemed to us that Europe starts more often with chemo and here with the other drugs. My husband asked his US oncologists about this. I think if you if you had more mets, they might have started you on chemo first.
I doubt it is a country thing, but a doctor thing. When I was first diagnosed in 2010, I got 2nd, 3rd and 4th opinions, before choosing surgery. After thatI settled with just my urologist. I got chemo in 2016, but only because Dr. Kwan at the Mayo recommended it. I realized then my urologist was a lazy jackass who had no interest in any treatments outside of his traditional view, so I fired him and found an oncologist. I quickly learned that there are no perfect choices, but it you need to know what choices you have. Chemo was not horrible and I have suffered no lasting damage from it. As another said here, targeted radiation is safer than you think, it might very well the better option for you right now. Definitely bring all your concerns and questions up with your oncologist. If they have reasons for not wanting you to get chemo, they should share them with you. Otherwise, get more opinions if you can.
Per NCCN Guidelines Chemo is 2nd level treatment for high risk PCa and in my dx Regional. 1st level is Lupron, Zytiga or another hormonal with or without Radiation. I am on Lupron and Zytiga and Radiation and am doing well. I have had no SE's from Radiation other than a little blood on by stool on the last day and the day after. I think my body handled it well and is handling the meds well also. We all handle things different this is just my experience. I recommend staying as physically active as possible.
SOC+ is about combinational treatments, Obviously, PCa mostly fuels on testosterone, so ADT will be out of the gate treatment. Adding chemo along with ADT is aggressive and proactive, because progression is identified when PSA is rapidly rising!
The fear of chemo seems to override the likelihood of cancer tumors spreading...
Chemo is given to hormone-sensitive men with metastases detected on a bone scan/CT. It was found to be beneficial even in men with a low cancer burden when given along with ADT. It is anyone's guess whether there is any value in a man who (1) does not have any metastases detectable on a bone scan/CT and (2) is not using ADT.
You may try estrogen patches instead of ADT if your doctor agrees. Some guys on this forum do that.
Radiation of your prostate is certainly beneficial in your case. It does not burn the skin at all. The danger of second primary cancer from it is extremely low.
Fortunately you have a number of options. I presume that your =ve PET scan is a PET PSMA scan (with Ga or F radio labels). If you have access in Canada to Lu177 treatment go for it, if you can afford it. It is believed to be more useful in early PC, as compared to later.Secondly, radiation to the pelvis may leave side effects depending on dose but is logical.
Chemo works better in early disease re efficacy versus side effects. And lastly ADT first or second generation hormones will slow PC progression down.
Do yourself a favor and get the radiation. May not kill 100% the cancer cells but will hit a lot of them. Ask about IMRT or the newest option photon radiation equipment. Both options offer very low risk of serious burns or etc. The radiation can carry risks of course, but so does the cancer monster. Every treatment that we have is dangerous and can have lasting side effects. No free lunch in the battle.
Debulking the primary tumor and maybe other small tumors they can find on a scan can make a significant difference to you.
You need an Oncologist. If your doctor is an Oncologist, tell him you need / want the full cycle of Docetaxel Chemotherapy + Lupron (ADT) every 4 months. These are systemic treatments that attack cancer throughout your system; shrink tumours and arrest the cancer. Docetaxel is generally very well tolerated with the primary side effect for most people being fatigue. It is a treatment you can have in Canada but you need your Oncologist on board. It’s effective. Perhaps you can reassess after these treatments and delay your radiation. Abiraterone is another effective hormone suppressing treatment as is Nubeqa. There may be disease burden requirements before you qualify for these expensive treatments but they are available in Canada as far as I know. Be smart aggressive. Many Oncologists are reluctant to subject their patients to radiation unless the benefit clearly outweighs the side effects that occur. Good luck, stay positive.
Of all the treatments I’ve had - ADT, Radiation, Chemo, the radiation was by far the easiest. I had some fatigue while I was being treated but that was it. No lasting side effects, I had my prostate and several cancerous lymph nodes radiated. I’m G9 stage 4. You may want to look up and review the CHAARTED trial regarding the early use of chemo for metastatic prostate cancer prior to speaking to your doctor, should be an easy internet search.
I had 8 weeks of radiation to the prostate bed and pelvic area in 2015 at Mayo Clinic in Rochester, MN. The idea was to zap the cancer cells in those areas so that they would not spread elsewhere. I felt nothing adverse during the entire process and had no negative after-effects. They had procedures to try to make sure that was the case, although I imagine there always can be issues with some patients. If you decide to move ahead with the radiation I would suggest that you have it done at a facility where they do many of these and are a teaching university or institution.
HiI did a month of radiation and had a space oar. Two weeks were easy
The last two I had side effects of mild fatigue and urinating was a challenge. Two weeks after radiation ended I was peeing much better. I thought radiation was pretty uneventful. I would go for it based on my experience.
I was diagnosed at 62yo Dec 2009 with a Gleason 9, with Psa 6. There was already some probable spread but CT scans saw none. I was offered RP but when docs went in at April 2010, they could not continue to remove PG because it had Pca wrapped around it which could not be removed surgically, so I could not have RP, and was told later I was one of 1% of patients who can't have an RP.I was then booked for standard EBRT in about 8 months, and put on ADT straight away, and this reduced Psa to < 2 at time of EBRT and size of PG volume reduced about 1/3 so it was a smaller target for EBRT which meant less damage occurred to bowels, rectum and bladder.
I had no bad reaction to ADT, and most men tolerate ADT very well, but a minority make them unable to think well, and resent the hot flushes and hate the reduction of libido and threat to their marriage etc, etc, etc. But I could not care less about such inconveniences.
I was not offered Docetaxel, the standard form of chemo because the protocol of having ADT and EBRT causes suppression of rate of growth of Pca, but may have very little effect of killing Pca cells. So the ADT kept Psa low until 2016, when it increased, and I had more IMRT to PG and to two lymph node mets, the first two to be seen in the newly developed PsMa Ga68 PET-CT scans which came to Australia where I live in 2015.
I then had Cosadex added to ADT, and this suppressed Pca growth for 6 months, then had Zytiga that gave 8 months.
So by mid 2018, I my Psa had been kept below 12, and Pca was never life threatening and I had a wonderful life style compared to having had chemo early, which causes much worse side effects than ADT plus the add-on drugs.
On ADT, I was able to continue my craft work for a living, able to think straight, hot flushes stopped after a year, and I was able to continue high intensity exercise by road cycling 220km+ a week average, as I had done since 2007, and still do now at 73.
But by mid 2018, I had had had 3 x PsMa scans and watched the steady increase of soft tissue mets in lymph nodes and then countless mets in bones, and so it was time to try Docetaxel. I cycled 20km over to hospital to get each dose, and cycled home 20km. But in days after each dose I felt awful, but managed a few km each day and as the severe effect of chemo wore off after a week I could increase cycle distance so after 2 weeks I was back to doing 150km a week, and able to turn up for chemo feeling all happy and cheerful, but in the ward where they gave the chemo, it was full of 20 ppl who all looked sad, depressed, 1/2 dead, unhealthy, and I could not cheer up any of them.
Anyway, after 5 chemo doses, Psa had moved from 12 to 50, and more mets were seen in scans so chemo was declared a failure, something that is all too common.
At diagnosis, chemo was regarded as end stage therapy, palliative care, while you got your affairs in order. It mainly just didn't work for Pca, especially when it got into bones.
By 2018, the hospital had 4 levels of chemo, with increasing toxicity and dreadful side effects. Docetaxl was mildest chemo, then the new chemo drug Cabazitaxel, which afaik gives only slightly better outcome than Docetaxel, then Carboplatin, a platinum based chemo that is especially nasty, and I don't know what No 4 ism but its the King Of Horribilty. So after failing with chemo, just as my oncologist predicted, I began Lu177 available here in Australia in Sydney, only 300km away from where I live in Canberra.
I had 4 doses between Nov 2018 and May 2019, and Psa went from 25 to 0.32 by Nov 2019, and docs had me on Xtandi from April 2019 to boost the action of Lu177.
I had no side effects and continued cycling 200km+ a week. The horrid leg neuropathy effects from chemo slowly got less, but my feet still are not what they were.
But chemo didn't stop me exercising.
But in 2020, Psa zoomed from 0.32 to 30 by July, and I had two more Lu177 doses, so by nd of 2020 my Psa was about 8. So the Lu177 had given me 2 years of life extension. My 9th PsMa scan last Nov showed all soft tissue mets gone, which just means they are too small to be seen in scan, and I had mainly bone cancer, with a few mets that were continuing on, and a few dead ones now healing up, and a few new mets that had low PsMa SUV and unlikely yo respond to any more Lu177, so docs decided I could not have more Lu177, because it would not have worked very well on the new mets, and there was increasing risk of accumulated ionizing radiation effects on bone marrow etc, etc, etc.
So what now?
Well, holidays et all meant I am seeing oncologist tomorrow about a way forward if there is on, which just means prolonging life without ever stupidly being hopeful of any remission, which is so rare with Pca its stupid to expect it.
I will ask onco for Ra223 ( Xofigo ) and it works by replacing calcium and is drawn to bone mets where high Ca traffic is going on. Doc might advocate more chemo, but I doubt it can ever work.
Then the other fear I have is that bone cancer mets can spread back into soft tissue, and maybe lymph node function to stop Pca getting into organs has been destroyed by Lu177,
so Pca could get to lungs, brain, liver without anything stopping it.
And by then, the nature of Pca is much mutated from original Pca at PG and maybe utterly un-treatable.
30% of men diagnosed with Pca will die because of Pca, but cause of death is written "lung cancer" but it was Pca that spread there, so 30% is much bigger than that.
Many die of other things, not Pca. But I have splendid health right now, so it does look like Pca will kill me at some time in next few years, or months, I have no clue, and for11 years since diagnosis I have never known if I'd last another year.
But despite the treatments, I have had a good life that is better than about 4 billion other ppl on Earth at least, so its no use me complaining. There will be a time when a doc says there is nothing else we can do. I am not quite at that point yet, but I see it coming.
Its a wet day here with summer rain, and I am resting after cycling 227km this last week at very good speed and no pains.
Hi Patrick. You have a great attitude. Similar to my 74 year old bestie. He is happy to do what he can for his G8/G9 but believes he is lucky to still be able to enjoy life pain free. LU 177 next for him I believe. 🌺
It would not have been my choice initially but after having experienced how my body deals with ADT, and knowing that I can both increase the effectiveness of chemo and reduce its bad effects by fasting 3 days before and 1 day after and made this one of my few choices now. Unlike ADT which you need to take for years, usually you are done with chemo after X number of weeks so I'd be able to keep my job while doing chemo. Or maybe I'll try to testosterone boost myself now that there is so much research confirming that it is safe to do so but also that it is as effective and with mainly positive side-effects.
Combining chemo and ADT is a common thing to do. I dont know chemos except from other people taking it. I dont like radiation at all. However, if you are hormone sensitive you have to exploit that as much as possible. Finasteride is not that bad and DES is not detrimental the way chemo is. Do easy first and worst last.
I took one shot of Zoladex each month for 19 months and 2x50 mg Casodex for 6 months and then 3x 50 mg of Casodex for 13 months. All that time until today I take 5 mg of Finasteride. What did you do exactly?
Don't want to repeat it all here since it's long and detailed in my profile where you can read about it. There is this wonderful video youtube.com/watch?v=wafNZV-... that no only talks about the interesting option of Testosterone boosting rather than blocking but near the end it also mentions that while some patients breeze through ADT, there are others who become straight-up suicidal on it. It's like any drugs, not everyone reacts the same to a given drug. There was even an anti-depressor that my wife was on a few years back that was eventually recognized as having caused some people to immolate themselves while on it.
Testosterone can be a problem. Some say it can cure you. Its all upside down. It is opposed to ADT. Testosterone can make you hormone sensitive again(?) after failed ADT. So many people are all on tough Rx s . It seems nuts not to use T if it worked to help kill cancer. I wont do HRT. PCa is tricky and it could make you irreversibly worse.
Some patients need T just to get enough energy to walk across the room. Dr Bob Leibowitz would give T in those cases only. He felt it wasnt a panacea. you can always use the cream on your arms to boost it. I still will not do it. My T is 300 and thats enough.
Discombobulated yet? Lots and lots of info and "stuff" to learn but we have great teachers here. So be what they call us 'PATIENT" and make sure you view all your options... Full speed ahead....Captain...... Screw the drifting sea mines.....
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I'll discuss this once again with my oncologist in two weeks. Thanks.
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