I have now completed 4 cycles of chemo (docetaxel). My next cycle (the fifth cycle) is on Monday, the 14th of January, 2019. The MO's treating me say they will not allow me to combine Xtandi or Zytiga with docetaxel. They want me to complete at least 6 cycles before they take a fresh call.
These are my PSA scores :-
Just before starting chemo, 8.7 After chemo, 9.4, 7.4, 5.3, 6.3, 5.7, 6.9, 5.6, 6.6, taken twice after every 21 day cycle.
As one can clearly see, my PSA levels do not seem to have come down at all, despite 4 cycles of docetaxel of 100 mg, 100 mg, 120 mg and 140 mg.
I have read that in the event of ones PSA not falling after 4 cycles, the odds are that they never will and one should discontinue the treatment and move onto something else like Xtandi or Zytiga.
Is this correct ? I am prepared to go upto 6 cycles (as my MO's insist) but no further if there is no fall in PSA by at least 50% from pre chemo levels (8.7, hence 4.35 or less). What should be my next move ? Move to Xtandi ?? Continue docetaxel but also take Xtandi ? Any other drug ??
Any help will be greatly appreciated. Thank you very much.
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whatsinaname
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I think your numbers are dropping. You haven't had a reading over 7 since the first cycle. It also looks like you get a spike each cycle which is probably a sign lots of cancer cells are dying and dumping their PSA all at once.
I'm new to all this myself, and hoping others will add their opinions as well. Going with the MOs is probably better than going with my advice My point was that it seems you are getting some response, even if it's not a dramatic drop. Perhaps a second opinion from another MO would help?
Be careful reading the studies, and remember they apply to populations and not individuals. I can easily get myself all worked up as most studies don't have good things to say about the number of bone meets I have. And of course, there's the study that implies fast PSA drops are a bad thing.
Yes, actually, the very fact that my PSA is not rising but is fairly steady could be considered to be a fairly good thing. Meaning, had I not been on chemo, perhaps my PSA could be shooting up a lot.
Finally, I'll google for the study which says that fast PSA drops are a bad thing. It will be an interesting report, I'm sure
One other thing you can ask about is Xgeva. It prevents bone loss and that can make it harder for the cancer to spread. I just started it last cycle. Can't say if it's working yet but I do have pain in new places which is a possible side effect.
Also, is your alkaline phosphatase being measured? It's a marker for bone activity and provides another clue what the cancer is doing.
We're both class of "diagnosed in 2018", so we're at similar points in our journey.
Thanks, tom67inMA. I will check out as regards Xgeva, thank you.
Alkaline phoshphotase has been normal between 80 and 90, where the normal range is 40-150. However, I must get my "bone alkaline phosphatase" levels checked. I'll do that shortly.
I am 62 years, 4 months. Yes, I was diagnosed with advanced metastatic prostate cancer on the 17th of February, 2018 after biopsies to the prostate and L4 vertebrae confirmed it. Was thought to be oligopolistic metastatic, but now have mets in at least 8/10 different places. Last PSMA GA 68 PET-CT done on the 12th of October, 2018.
My MO and I agreed that Docetaxel is not nearly as affective as Jevtana, and jevtana should be firstnline treatment. However, the insurance companies will not allow that. Then once we added Carboplatin to the Jevtana we got a very favorable response.
Whatsin, Your PSA has fallen from 8.7 to 6.6, that's reduction of 24% perhaps not what you were expecting but a reduction nonetheless. After my 3th Cycle of Chemo my MO also wanted to discontinue Docetaxel and start me on Zytiga. Pretreatment my PSA was at 15.8, after a dip to 9.4 it rose to 17.3 by infusion #3. We decided to continue on with Chemo based on the fact that I was relatively young (62) and healthy and the pain I was having from Mets was subsiding. During my next 3 cycles my PSA fell to 14.6 but then steadily rose to 30.1 and topped out at 32.6 two weeks after my 6th Doxetaxel infusion. In hindsight I should have stopped after cycle number 3 and gone with the "odds" and started Zytiga immediately as my PSA has fallen from that 32.6 to 14.2 in one month of taking that drug. So just my 2 cents and mind you we all respond differently which is one of the most frustrating aspects of this disease. Good luck.
I assume that you are also on ADT, probably Lupron. Keep in mind that the ADT is the primary cause of PSA drop and that the docetaxel extends the effect of the ADT, more than it lowers the PSA at this point in your treatment. My PSA dropped from 145 to 1.68 with ADT alone, just before I started docetaxel. It has continued to decline and my MO is sure it’s the ADT.
Yes, I am on Eligard 45 mg, a six monthly injection. Last took it on the 12th of December, 2018. The highest reading of PSA that I got was 16.51 (before treatment began). The lowest was 2.33 after Eligard.
Then my PSA started rising, almost trebled in 2 months to 6.8 and I was asked to take chemo (doectaxel, taxotere) for a minimum of 6 cycles, perhaps 12.
I have completed 4 cycles (each after 21 days) and the fifth is coming up on Monday, 14 January, 2019 (ie tomorrow).
It's sort of hard to change course now, but you can use your next 42 days to set up some second opinions and explore treatment options with other docs.
Ask your current doc what are some of the options and treatment scenarios after you finish this course of treatment.
Lu177 and bipolar testosterone treatment should be on the menu, but you will have to travel for those.
Yes, there are at least 3 good hospitals doing it in Bombay right now. The Tata Memorial (reputed to be the best in Asia), Hinduja Hospital and Jaslok Hospital.
I will call for the approx costs tomorrow, today being Sunday. I am pretty certain that not only will the quality of treatment be very good but also the cost of treatment. Thank you for the excellent suggestion, cesanon. Much obliged.
I will also look into bipolar testosterone therapy asap. Again in Bombay. Preferably.
Please post the contact info for these Indian hospitals, and what they charge.
Also, if you investigate how many they have done to date and when they started, would you post that as well.
The Germans are experimenting with safer psma carriers for the lu177. You may want to explore that issue as well. Tall_Allen has some informative posts her.
May you should start a whole new thread on the subject.
PS: I forget the pricing, but the Australians were pretty darn cheap.
6 cycles is the standard of care. Your PSAs are low to begin with. What is the pattern of your bone alkaline phosphatase? Maybe ask for a bone scan/CT to see if your mets are shrinking - that may be more useful than PSA in judging if the chemo is working.
Thank you very much, Tall_Allen, for the new angle.
My alkaline phosphatase tests have all come in normal between 80/90 where the range is between 40-150. However, I think I should ask for a "bone alkaline phosphotase test" instead of just an alkaline phosphatase test. I will do that on Tuesday 15th January and report the results the same day on this board. The bone scan/CT will take a bit more time to work out. Would a PSMA PET/CT be more useful ??
Many thanks for your continuous help and advice, Tall_Allen. I am truly obliged to you.
Tall_Allen- what can you tell from the pattern of. One alkaline phosphatase? Any good reference materials for this? My husband gets a alk pho’s reading with his blood work and it is always 220 or higher but I think this must be an entirely different thing, as I believe his reading measures his liver function.
Thanks. Yes, then I think a PSMA 68G PET-CT scan has to be done. I have the CD's of both earlier scans along with the reports. It costs approx INR 24,000/- here in Bombay, which is approx UD$ 350/-
I would definitely complete your 6 infusions of docetaxel. Just kinda confused your oncologist would start you on this process. Usually a much higher PSA (mine was 138) makes the decision to go with chemo first then continue treating hormonely. Casodex, Zytiga. Sorry I haven’t read any of your previous posts. Do you still have your prostate?
Yes, I still have my prostate I was detected at the very outset with metastatic prostate cancer and therefore surgery was effectively ruled out. I was treated with Casodex (14 days) and thereafter with Eligard. I went through 38 fractions of radiation and now finally I am on chemo (docetaxel) as the mets have spread from the L4 vertebrae to several parts of the body, including the skull, neck, collar bone, left lung, ribs, spine, thighs, etc, etc.
I think the decision to go for chemo was taken because Eligard had failed and the mets had spread to various parts of the body.
I had a Gleason 9, inoperable, at 63 in 2010. I began ADT, continuing now.
I had EBRT at late 2010, then salvation IMRT at 69 in 2016, with added Cosadex for 6 months then Zytiga for 8 months, and Psa bounced up and down between 0.08 to 8 so I quit Zytiga, began docetaxel at Psa 12 earlier this year, and I was riddled with mets, many in bones.
I figure I might have gained 14 mths lifetime extension with casodex and zytiga. My onco said chemo would not give much time benefit before I commenced it.
Psa went to 36, 26, 27, 40, 45, at after 4 chemo cycles. A GP ( local doctor ) said chemo had failed after 2 cycles. But after 4 cycles my onco had no more faith in chemo than me and granted my wish to be referred to Lu177 theranostic treatment. Then I had a 5th chemo cycle with Psa 45, and at first Lu177 inject 31 days after last chemo Psa had come down to 25, then it levelled but is now about 20, 8 days after the 2nd Lu177inject, and there is not much benefit yet to either chemo or Lu177, but at least Psa is not doubling fast like it was before chemo.
Unfortunately, if we all could read the history and see their Psa vs time graph we may still never be sure on what treatment to seek, and there would always be different treatment offered for the same patient if he were to get 2nd and 3rd opinions.
Pca is typically controllable by supressing its progress by months to many years of ADT and added blocker drugs like casodex, abiraterone ( zytiga ) or enzalutamide ( xtandi ) Most oncologists will not give xtandi after you have had zytiga or vice versa because if one does not work for long, nor will the other. and average life extension for these drugs is about 8 mths, each with a pile of side effects.
I am stepping into each day of my future that is uncertain. It is certainly finite, but I have no idea how much time Lu177 will give me, if it gives anything. I have been told the Lu177 + previous chemo is likely to make my Pca which survives the slaughter by these will regain the property of being able to be suppressed for a longer time with zytiga. But Pca usually finds a way of mutating to resist all types of treatment brought to us by well meaning doctors. And each type of treatment can usually only affect a part of the total Pca tumour cell varieties and there are always survivor cells which still are able to grow which eventually become un-treatable by any known approved therapy, and certainly not by very many unapproved alternative therapies. But I would have died years ago without seeing a doctor about problems I had below my waist.
I know a man who had Psa drop from 40 to 2 in about 2 chemos, and visceral mets could not be seen in scans after more shots but after 10 shots Psa was right back up, and he tried PARP inhibitors, and now Psa is over 400, and he's trying to get on trial for Lu177 plus idroxinol.
Lu177 with 4 shots over 24 weeks gives typical Psa lessening for < 12 months and now research in Australia is trying to hot up the success rate of Lu177 so that the added chemical combined with Lu177 for gives more destruction of more Pca cells, and for a longer time, and to a wider range of patients.
There is going to be a trial of Lu177 + keytruda later this year.
It seems keytruda is pembrolizumab, and immune system booster that works well against melanoma, which used to kill many more than it now does. So while you might die more slowly with such treatments, it is all experimental and the high price of all these treatments keeps a substantial number of research doctors well employed. There are many older men who can well afford the high prices of treatments to gain a year of extra life.
If I had chemo again, it might be cabazitaxel, and next up is carboplatin, and I don't know what the highest one is, but at each step up from one chemo to the next there are more vicious side effects. So at some point, many ppl with incurable cancer will have so many side effects and complications that they cannot complete a course of chemo or other treatment and the cancer wins.
My sister died of Oa at age 60. She was diagnosed a year too late, had drastic surgery, but after only 4 chemo shots the doctors said she had 2 weeks to live, and she died 2 weeks later, happy and high on morphine given by a drip feed operated by a button so the more she pressed the higher the M dose, and she died alone at 6am after pressing the button as often as she could until she lost consciousness. She'd made a good will, and had been a good mother, and off she went, and all of us left would rather she lived longer, but we just don't get the chance to control all things.
I am trying to enjoy a humble life for as long as I can.
I enjoyed a good day today, and I hope I have a lot more good days, and I hope you all get more good life.
Thank you very much, Patrick Turner for all that information, most of which could be very helpful to me. Thank you for taking the time and trouble to write to me. I truly appreciate it. Cheers !!!
If you are deciding for lu177 psma therapy as your treatment option at any point of time, it is available in India itself. In Cochin the treatment is available in two hospitals. It is much cheaper than going abroad. It costs around 2.75 lakhs for one course. But in my opinion you have many treatment options left before going for lu177. Keep lu 177 treatment as a later option. Better to complete the six cycles of docetaxel as prescribed by your MO.
I think it will be wise to decide your next treatment option after a psma pet scan . If the visceral mets have subsided you can try Aberaterone Acetate. The visceral mets are still there you can go directly for lutetium 177. Did you check the cost in Mumbai hospitals? It will be cheaper than Cochin. Psma pet scan costs only 24000 in Mumbai whereas it costs 30000 in Cochin. You can always rely on Tall Allen's opinion. I think he is very knowledgeable person in this group. I also admire the opinions of Nalakrats, pjoshea and Gregg also.
I have written to your personal email also. Please see
Thanks, Ajith, for your reply. Your reason for maybe waiting to use Lu177 makes eminent sense. Thank you for your view.
I have just returned from my 5th chemo session at Breach Candy and am fairly exhausted. Its 19.15 hours in Bombay. I will look into your personal e-mail either later tonight or tomorrow morning and reply then, for sure.
I have decided to complete my sixth chemo session on the 4th of February, 2019, and then do a PSMA PET-CT on Saturday, 9th February, 2019 at Breach Candy.
I will meet my main MO on Wednesday 13th Feb with the report and CD of the scan and get his advice on what to do next. If needed, I will meet my stand by MO on Friday, 15th Feb. to see what she says.
Thanks again, Ajith. Expect to hear from me within the next 15 hours maximum.
I started xtandi after two docetaxel, one month later psa was o.1,,passed out at the table,moved to zitaga, took for 15 months along with provenge psa started to climb ,now on jevtana,numbers going down,my mo hits it hard, whatever works
In comparison, my mo's are wimps (all of them). Their favorite phrase is "standard of care" But, I do think my mo's are trying to do the right thing by me.
I think Tall_Allen has hit the nail on the head as usual. Most positive way to see if the disease is progressing is to get it scanned and then go on from there. PSAs markers are something to go by but pretty useless if you are unlucky enough that your cancer has changed into a type which can progress without giving much PSA off anyway. It's pretty chilling what this awful disease can do to evade our best attempts to control it. But rest assured I for one Know what you are going through as do many more on this site and wish you all the best with your treatment. By the way what is your gleason score?
Yes, my MO has already asked me to do a PSMA 68A Gallium PET-CT scan after the 6th cycle of chemo gets over.
I have mentioned (no one including Tall_Allen has addressed this issue) that I have read an article in an American Journal (dated January, 2017) stating that if the fall in PSA after the fourth cycle of docetaxel is not more than 50% ( say, from 9.0 to 4.5 or less), from the top level before chemo, then the odds are that docetaxel has failed.
And, if docetaxel has failed, the treatment should be discontinued and another one tried both to save the patient from unnecessary toxicity and also to help the patient fight cancer better. I would add also to save money and time/effort on something not working.
But, the quacks swear by their "standard of care", don't they ??
I will be out the entire day tomorrow for my 5th cycle of chemo and hence am not going to access the net at all. I will return on the 15th of January, 2019.
To be honest I think you are pretty lucky if you are going to get that particular scan on your healthcare plan, if you are PSMA positive its the next step to getting the Lutetiuum 177 treatment done. Here in the uk its really difficult to get that scan and from memory privately it costs in the region of £2-3000. The lutetium 177 treatment is still in its trial stages so thats probably why the NHS dont offer it, no point!
I can see your point in having as little radiation as possible but just one magazine article isn't much to go on. Theres plenty of info to be read saying PSA readings can bounce about a little so a scan is still probably the most positive approach to see if chemo working or not.
I've just read what what I've written and wouldn't want you to think I'm some sort of smart arse, truth is I'm going through something similar to you. I was diagnosed about a year ago put on zoladex then the 6 infusions of Docetaxol the god damned disease reacted in anything but a text book way, some of it progressed rapidly while other parts of it actually shrunk. I'm on Xtandi now, but frightened confused and angry. I'm thinking why the hell aren't they doing this or that. I am trying to calm down and look at what the professionals are doing and give them chance to show what their several years of training can do to help me. Saying that I'm still doing a lot of research on this website and more.
Hope that helps you and again wishing you the very best outcome with your treatment.
I echo Tall Allan and Richard, my dear Whatsin - tests and scans to track met progression are key at this point. But I also definitely see your concern - while chemo used immediately after PC diagnosis in conjunction with ADT/ADT-adjunct therapies has demonstrated statistical significance in "time added" for PC sufferers, your case doesn't seem to fit this, as RalphieJr pointed out above.
Are there other indications that chemo is working, specifically a reduction in the lung mets (bone met changes can be hard to quantify through scan)? Likely by the time you figure out if this is the case, your chemo treatment regimen will be over - and of all chemotherapies, Docetaxol is one of the most broad-spectrum with the least comorbidities. I understand that this may ring hollow if you read this right after your latest therapy!
Hello Whatsinaname, are you on androgen deprivation therapy (ADT) with Lupron, Zoladex or Degarelix? ADT and docetaxel are standard of care. If you are not then you should be - bimodal therapy will be more effective that monotherapy. I have not come across literature where docetaxel is used concurrently in combination with Xtandi or Zytiga (although it may exist); the combination may result in severe side effects. If there is no literature or trial supporting the combined use of docetaxel with Xtandi or Zytiga as first line therapy then it is probably wise to avoid. Your doctors are escalating the dosage of docetaxel which may result in a response at higher dosages, but you already appear to be at the high end of the range. The standard dosage is 75 mg/m² (mg of docetaxel/calculated surface area of the body).
Yes, I have been on Eligard for quite some time now (90 days on Eligard 22.5 mg and 210 days on Eligard 45 mg).
Yes, my MO has increased the chemo dosage after I urged him to do so. I urged him to increase my dosage as I was tolerating it fairly well and I also thought that for my weight/height and general physical condition he was under dosing me. You are right, I cannot go above 140 mg or 75mg/m-square.
I think a PSMA 68 PET-CT scan is called for in the next 30 days or so to figure out what to do next. I can get it done at maximum 2 days notice as I pay for it myself and do not need sanction from doctors or insurance. I live in Bombay, India.
Thank you very much, Phil for taking the time and trouble to respond to my cry for help.
Very intentionally I haven't read the answers here before writing mine because I want to write what comes to mind after reading your initial post.
The PSA levels haven't gone down significantly but neither have they gone up. They fluctuate which is something that can happen particularly in the arly stages with Chemo.
When did you get your last scans done? Since you have had four (now five) cycles already, I think you should ask them for another CT and bone scan to determine what the cancer is doing rather than just relying on the PSA levels. Such scans and their results could also determine whether Docetaxol is the right Chemotherapy drug for your or whether it would be good to try something else.
To my knowledge, Chemotherapy and Zytiga are not given in combination, at least not here in Ireland.
Lastly, I would like to encourage you to speak your mind with your oncologists. They want you to continue Chemo and only review after cycle six, but if you feel it is necessary now and if you are worried, get them to do scans. That is the only way to find out what is happening with your cancer now in comparions to before Chemo.
Thank you very much, Mel, for that fantastic reply.
Everything you say makes sense. I am now going to be doing a sixth cycle of chemo on the 4th of February and will then follow up with a PSMA PET-CT scan on the 9th of Feb to determine whether the mets have increased, reduced or are more or less the same. The results will be out on the 12th and I will be meeting with the MO's, one on the 13th of Feb and the other on the 15th of Feb. Hopefully, after meeting with them I will know what to do next. I will also post here once again.
I am headed off to Goa with my wife from the 21st--29th of January to relax and enjoy
Its just an hours flight from Bombay, where I live. Good food, scenic beauty, calm and peace. Intend taking a few massages
Thanks again, Mel, much obliged to you for taking the time and trouble to write to me.
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My point was that it seems you are getting some response, even if it's not a dramatic drop. Perhaps a second opinion from another MO would help?
Rechallenge with Xtandi 
Docetaxel/Taxotere. 2nd time in 3 years. It's a no go this time. No benefit after 3 infusions.
Nothings worked. Help please
