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Kezza2

Well gentlemen, 

The time has come.  I was on abiraterone + apelutimide trial for two years until that failed, and swapped to enzalutimide (Xtandi) but that only lasted three months, and now my PSA has more than doubled from 17 to 38 in 6 weeks, so it seems that docetaxel is next on the list.  Having not had docetaxel previously I am not a candidate for the Lu177 trial unfortunately, so I am scheduled to start docetaxel in two weeks.

 

I would appreciate any words of wisdom from the wise who have already been through this on side effects and how to avoid or minimise them, and what I may expect.

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alanbarlee

Hi Kezza,

I've sent you an email message, offering to send you a substantial pdf file by return if you can email me (at abarlee@bigpond.net.au).

Cheers,

Alan

 

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Terry J

Hi Kezza,

Sorry your journey has brought you to chemo but there are things you can do to alleviate the taxing side effects; in a word “exercise”. I have had surgery, hormone therapy, radiotherapy and chemotherapy and am convinced that exercise has been of major assistance in my coping with side effects. There is research to support the theory that exercise during chemo has very positive outcomes. If you want to talk, email me your phone number. I am at (tejbourke@bigpond.com). 

Regards,

Terry.

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stevecavill

Hi Kezza,

I think the key is that everyone is different.   I had an awful time, but I have met other men (and women on docetaxal) who said they didn't have much trouble at all.  Cancer Council have a great booklet -https://www.cancer.org.au/content/about_cancer/treatment/Understanding_Chemotherapy_booklet_August_2016.pdf

 

Things I would recommend you watch carefully:

 

Mouth sores - use mouthwash after EVERY meal - you can buy it or make with carb soda.  DO NOT use alcohol based mouthwash.  Don't wait for mouth sores to form, by then it's too late!  Get a REALLY soft toothbrush - I got a kit from the hospital that had a care-dent toothbrush which was amazingly soft.

 

Infection - ask everyone around you, especially visitors, to use hand sanitiser.  Get a good medical thermometer, and check your temperature every day.  An infection can turn very serious very quickly as you will have low immunity.  A temperature of 38 or more means you need to go to emergency at hospital, not the doctors.  They should make that pretty clear when you start.  I ended up in hospital for 4 days when I got a fever.

 

Ask about a flu shot, for you and everyone you are in regular contact with.

 

I was exhausted most of the time.  But even if you're tired, small amounts of exercise are good.  Even if it's just walking your house letter box !  Take advantage of increased  energy towards the end of the cycle.

 

After it finished, I swore I would never do it again!  But a year later, if it was a good option I would do it, 

 

Best wishes, Steve

 

 

 

 

 

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Chalkie

Hi Kezza

I had 7 infusions of doxetaxel  last year and now on Xtandi which has run its race.  So I am looking at being considered for the Lut/Cab trails in early Sept.  Good advice above re keeping all body parts clean.  Worst for me was infected fingernail.   My advice is to scrub your nails every day.  Not sure if this will help but it may help.   Other wise side effects were tolerable.  My hair came back and my nails are good now - even my fungal infested toenails are looking much healthier than before I started chemo.   Good Luck!   In hind sight I could have kept going the Doxetaxel but the promise of many many year on the new lines of treatment were enticing.  (when I started in Feb 2017 I understood that 6 infusions were all that was available but not long after I started 10 were going to be available and at the end of August when I stopped there was an option to go on for ever.  My PSA had plateaued at 20 and I thought that was enough.  Now my PSA has gone up from 10 in March after 3 months on Xtandi to 22 in June to 50 in late July.   So now it is fingers crossed to be selected in the new Lut trial or it is Cab Chemo

Good Luck 

 

Cheers

 

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alanbarlee

G'day Kezza,

The above advice is all excellent.

A few additional thoughts (from a so far non-chemo 'student'):

 

My take is to check in advance that the medonc and cancer nurse will set you up with cooling for your scalp - especially your feet and hands - during infusions, to minimise collateral damage to healthy high turnover cells. Mouth washes with”Denta-Med’ (check the website) can help with the other high turnover cells in the mouth, more frequently during the week after the infusions. 

Have your medonc discuss with you the pros and cons of a lower dose at 2-week intervals rather than higher dose at 3-week intervals (there are positive trial results for this), and that the infusions will be delivered slowly. 

Consider vigorous exercise immediately after infusions (e.g. ideally an on-site gym bike - Google Rob Newton's groups’s world-class research on this at Edith Cowan Uni in WA).

Avoid sources of infection between infusions, and ask your medonc about a prophylactic antibiotic, since febrile neutropenia is a risk with docetaxel. You might also ask about measures to control nausea if you encounter it.

Docetaxel (Taxotere) is considered to be relatively mild compared to other chemo agents, and is often well tolerated by younger and fitter men. However, if you happen to fall in the smaller group that can’t tolerate docetaxel, be  aware that the second-line cabazitaxel (Jevtana) can then be ordered by the medonc and subsidised under the government Pharmaceutical Benefits Scheme. This second-line taxane has a different side effect profile to docetaxel. However, in that case you might also become eligible for the 177Lu-PSMA trial A-positive if you are PSMA-positive - which would (randomly) give you access to one or the other, but with the benefit of very close monitoring. 

Good luck Mate: keep us posted.

Cheers,

Alan
 

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dcmit

Mr. Kezza,

            As of today, I have completed 19 rounds of doxetaxel at tree week intervals.I did thirteen straight until my PSA fell below 4.00, which surprised by oncologist who said initial I would be on doxetaxel, lupron, zometa, and neulasta (which is the most expensive part of my treatment for life.  The nuelasta is to maintain my white cell count to guard against infection.  I was off doxetaxel and neulasta for seven months, but continued lupron every tree month,and zometa every 4 week.  In March My PSA went 2.81 to 6.49 in 4 week and on my doxetaxel restart in April my was up to PSA was 19.49.  So back on doxetaxel and nuelasta.  Just completed round six of dotexatel, zometa and nuelasta today 9 Aug.

Side effects:  Loss of hair everywhere; neuropathy in feet, lower legs, hands, and fingers, (worse in feet and lower legs, no pain, feet and legs feel like they raped with a thigh ace bandage, causing balance problems); after three treatments started to lose finger and toe nails; low energy; sever fatigue (need two or three naps of 45 min. to 1 hour a day plus 10 to 11 hours of sleep a night; runny noise ( have no solution for this); dry eye, and loss of taste for sugar and sweets  Luckily no nausea.

            During the seven months off doxetaxel I found the

For dry eye taking 2 10,000 unite of vitamin and two tabs of 40mg lutein daily.Helps but not a cure.

For neuropathy I take six tabs of Nueropaquell daily started this in Early April. Neuropathy in hands and ] fingers is greatly reduced and neuropathy in feet is reduced and lamost gone in lower legs.

Some comments on Nueropaquell: 

Quantum Leap Neuropaquel Benefits:

– An all-natural nerve support supplement made with several effective herbal extracts

– Ingredients in the formula do not have any known side effects

– Helps to improve nerve health and reduce pain

– The brand is said to be made in an FDA registered facility that adheres to GMP quality standards.

Quantum Leap Neuropaquell Drawbacks:

–Formula uses the basic Alpha Lipoic Acid and does not contain the higher potency and more absorbable R-Alpha Lipoic Acid. – Does not contain L-Carnitine, a key amino acid, which helps repair damaged nerves.

– Enrolls customers in a trail promotion which then has on-going monthly charges.

During the seven months off doxetaxel I found that

For dry eye taking 2 10,000 unite of vitamin and two tabs of 40mg lutein daily  Helps, but not a cure.

For neuropathy I take six tabs of Nueropaquell daily started this in Early April.  Neuropathy in hands and fingers is greatly reduced and neuropathy in feet is reduced and almost gone in lower legs.

Since late July to improve energy and reduce fatigue in the morning I drink 8 oz of a warm Vital Proteins Bone beef broth collagen with a large amino profile mixed with Moonbeli’s Blue Green Protein and Mushroom Adapfogen.  In the evening I drink a cold drink I drink 8 oz of a warm Vital Proteins Matcha  Collagen with a large amino profile mixed with Moonbeli’s Energy Tonic and Mushroom Adapfogen.  Even in this short of time energy levels have improved and evening fatigue is less.

For general health against the metastatic Prostate cancer< I take 10,000 units of Vitamin C and 4,000 mg. of Vitamin C daily.  In addition to help burn off sugar in my diet I take 500 mcg. Of Chromium picolinate daily.  I have been taking the chromium picolinate for over 50 yeas to help get the sugar out of my system.

One more thing in Mid-July I had my general Practitioner run a blood tests of all the Vitamins and minerals I could think of and a Cellsearch ® circulation tumor Cells, prostate (CTC) test.  I am now raising all the vitamins and minerals that came back low.  The addition of zinc has already restored my teste for sugar and sweets.  

Hope you find some of this helpful.  Note: If anyone know of a remedy or remedies for runny nose or dry eye, please, post in the replies to this topic.  I am sure there are many people reading the replies to this topic who need remedies to these problems.

Sincerely,

 

DCMIT

 

 

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Charles (Chuck) Maack

Hello Kezza, I am pleased to see all the offers of support posted here by those who have been there, done that.  I compiled information regarding what to expect as well as side effects that might (or might not) occur.  In opening the following, you can scroll down to suggestions provided by a few patients to ease the journey.  One or two references may be to old to open, but there is enough information in my paper to provide you a pretty good idea what to prepare for in advance, what to ask your treating physician in advance, and things that you can do or have with you during the procedure to help make the journey more comfortable.  Wishing you well:

http://www.theprostateadvocate.com/pdf/CHEMOTHERAPY SIDE EFFECTS.pdf 

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Charles (Chuck) Maack

Dear Kezza, I was just reviewing all the experiences these men who posted explained, and what they did to alleviate as best they (and their physician) determined might work best.  What you might consider as you read each of the foregoing, is writing down each experience and what each man did for that particular experience.  Then write down a different experience, and what each did for that, and so on.  That way you will reduce all this reading to your own set of what you might experience and what might help you prior to, during, and after each treatment.  Certainly other health issues, if present, must be taken into account before and during docetaxel treatment.  In much of my research and reading, chemotherapy treatment with docetaxel can be minimal as far as bad experiences for  some, a bit more for others, and of course, very discomforting for others.  We just never know, so like all these supportive suggestions, we hope among them will be those that will help your journey be of minimal discomfort.  I am going to post the recommendations of a prostate cancer patient here a few years back that is quite comprehensive in what he experienced and what he did to alleviate as best he could those side effects that seem to accompany chemo.

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Charles (Chuck) Maack

Dear Kezza, here are the experiences of a patient that I mentioned in my last post:

Hi all,
The other day someone asked me to summarize my experience with Taxotere in a direct person-to-person e-mail exchange. So I did sit down and try to remember everything that seemed to matter involved in the five 21-day treatments I got, and have decided to post that summary here for whatever benefit it might provide others headed toward Taxotere. I got through the five treatments relatively unscathed as far as side-effects go (other than hair and blood cell losses), but gave it up after treatment number five because it clearly wasn't slowing my cancer's progression. Anyway, here is the summary. Please be in touch if you've any questions about any of it:
(1) I started on 10mg. of Prednisone per day a few days before my first treatment, along with 20mg capsules of Omeprazole to minimize stomach upset from it.
(2) We'd done some research on how to avoid neuropathy, and pursued four strategies on that:
- We bought a jar of bulk Glutamine (available in "Health" stores and on-line) and I mixed a teaspoon of it with cold beverages (heat destroys its effectiveness) and drank one of those about four times a day the day before, the day of and for three or four days after each treatment),
- During and for an hour or two after treatments I would suck on ice chips (available there at the place I was treated),
- During and for an hour or so after treatments I would press my fingernails to the cold metal water bottle I spooned my ice chips from), and
- I took my shoes off during treatments and otherwise tried to keep my feet at least cool as much as possible the day of and several days after each treatment.
[Either as a result of doing those things or just from pure luck, I got through five 21-day treatments without any neuropathy or mouth-sores issues.] [I listened to recorded music through earphones during treatments to keep my hands free for dealing with dealing with the ice. I probably had to unplug my I.V. pole from the wall and get over to the restroom three or four times during each treatment as a result of the amount of liquids I was ingesting. Someone here on the site described that as "doing a pole dance"!]
(3) The week before my first treatment I got an under-skin "port-a-cath" I.V. port installed in my chest in anticipation of its being used for all things having to do with blood or I.V.'s thereafter, but it turns out that only certain, specially-trained nurses can use it, so all it ever got used for was my first four Taxotere treatments, and then unfortunately in setting up that fourth one the nurse punched the needle through the back of it, ruining it. For me, in retrospect, it was more trouble than it was worth.
(4) At each treatment they would begin by giving me I four different medicines via I.V. drips:
- 0.25 mg. Aloxi and
- 20 mg. Decadron to help minimize nausea, and
- 50 mg. Benedryl and
- 20 mg. Pepcid to reduce the chances of my having an allergic reaction to the Taxotere.
(5) Something I very much appreciated: They began all my drips of Taxotere very slowly, at a rate I believe of 15 drips per minute for the first 15 minutes, and then doubled to 30 drips per minute for the next 15 minutes, then to 60 per minute the next 15 minutes, and then to maybe 90 per minute for the duration, so that if I did have an allergic or other unfavorable reaction we'd catch it sooner and with less Taxotere in my body than if they just began at 90 drips a minute. They checked with me every couple of minutes particularly during my first treatment to make sure I was breathing and feeling okay. That is no time for heroism or stoic "toughing it out", because allergic reactions can be life-threatening. At the first inkling of trouble, hit that "Help!" button! .....I never did have any allergy problems with it.
(6) My doctor prescribed some 'take at home as needed' pills (10 mg. Prochlorperazine) for nausea, and urged that I take one at the first hint of possible nausea, and not to wait until it fully developed. So I did, but only twice, and that was the sum total of my nausea experience during all five treatments.
(9) I didn't end up changing my diet or habits at all, other than Prednisone (and just nervous jitters?) disrupted my sleep somewhat, and [#'s 10, 11, & 12 below]:
(10) My hair (and I had a lot of it) began falling out on Day 16 or 17 after my first treatment, and by probably Day 25 I was down to no body hair left at all, and just white, wispy peach fuzz where my head hair (top of head, eyebrows, eyelashes, beard and mustache) had been. However, on about Day 50 after my last treatment, arm, chest, and head hair have begun reappearing.
(11) DURING YOUR TIME ON TAXOTERE, ASK FOR AND MAKE SURE YOU RECEIVE AND CAREFULLY REVIEW ALL BLOOD TEST RESULTS! I had blood tests the day of or day before each treatment, and 10 days after each treatment. After my first Taxotere treatment, my white blood cell counts dropped like a stone into the danger zone [according to the Cancer Center where I am being treated, 4.0 to 10.0 K/UL is "normal"]. I was flabbergasted when my Oncologist's [the one I fired] response to that was "so just stay away from germs"! Blood cell counts seem do drop for about 10 days after each treatment and then rebound at least somewhat. Because of my Oncologist's lack of concern, I did not get a Neulasta shot after my first treatment, but I did get one the day after all the other ones. Its cost (about $2,600) and possible side-effects (the usual horrifying list) conspire against its being given willy-nilly, but my using it coincided with the fathers of two participants on the Advanced PCa site's being hospitalized with life-threatening infections as a result of not being given those shots, so I was in no mood to take chances when avoiding the possibility of such infections was so easy and readily available. The only side-effect I had from the shots were: some bone discomfort from the bones housing the marrow that makes white blood cells as they whipped into hyper-activity, and at one point, a severe over-abundance of white blood cells in my bloodstream (31 K/UL)..... I had no side-effects from it, but I imagined my blood was the consistency of a strawberry milk shake!
(12) My three most important red blood cell measures all dropped into the "low" range, but none of them ever got low enough to prompt our giving me a shot of Procrit, Epogen or any of the other booster medicines, or of me getting a transfusion. Again, according to my Cancer Center's reports, "normal" is:
4.60-6.20 M/UL for Red blood cell counts
13.5-17.5 GM/DL for Hemoglobin (oxygen-carrying capacity of red blood cells)
41.0-53.0% for Hematocrit (what % of the blood is red blood cells)
.....My question to my new Oncologist was "Isn't getting 'low' on all three of those equal to getting dangerously low on one of them?" ....but he didn't/doesn't seem to think so, so we never did anything about them.
The unhappy realization that came later was that the drops in those counts isn't just as a result of the killing off of circulating cells, it is also as a result of damage to the bone marrow that produces them, and so the recovery time from having those low counts is apt to be months and not days. My counts are still low almost 60 days after my last treatment. --What having those low counts can do, among other things, is put immense stress on the heart, as it beats faster and faster in an effort to get enough oxygen circulated. When I found that my sitting/resting "normal" heartbeat was in the mid-90's per minute, and that slowly climbing a single flight of stairs would toss me into the 115 beats per minute range, I broke down and bought (I shopped around: best deal found K-Mart: $29.99 back in their sporting goods department) a wrist-watch-like heart beat monitor so I can easily monitor and pace myself. Even now I still can't go to the gym, play tennis, or really do anything approaching "exertion"......which is a real drag for someone who relies on regular exercise for weight control and mental health preservation.
......I am trying to think if there is anything I am forgetting...... I think the above is pretty much it. I had anticipated suffering lots of ugly side-effects, but really I feel like I came through it pretty much unscathed in the great scheme of things - hair loss, blood disruption - but nothing that sent me to the emergency room* or that won't correct itself in time. *When the nurse punctured the back of my chest I.V. port it let Taxotere leak into my chest tissue, and that produced an angry red swelling that looked so like a major infection that I did end up at the e-room and in the hospital for three days trying to deal with it. But that shouldn't be part of the "normal" Taxotere experience.
My PSA continued to rise through all five treatments, so we stopped at five. I would consider trying Taxotere again sometime in combination with other medicines that might enhance its effectiveness.

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Kezza2

 With all the excellent advice I have received from fellow members I am slowly painting a picture of what I can expect, the alternatives that may or may not occur, and the preventative measures I need to take to minimise side effects.   Thankyou to all, and I will keep you appraised of developments.  I had my scoping CT and Bone Scans yesterday, so here we go.

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Charles (Chuck) Maack

Hello again, Kezza.  In the Prostate Cancer community, it is frowned on that we give advice.  Soooo, we offer our "opinions!" ?   Glad to learn that all our "opinions" are helping at least to some degree to ease your worry and concern. ? 

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Patrick Turner
On ‎8‎/‎9‎/‎2018 at 2:12 PM, Kezza2 said:

The time has come.

Indeed, and time not only drifts slowly past, it flies at us with a fury.

I have just updated my website page and updated the graph where a quick look reveals a not so good picture.

http://www.turneraudio.com.au/Patrick-other-concerns.html

Present Psa after 3 x Docetaxel 3 weekly cycles = 40, and present doubling time is 1 month, so if nothing works in near future the Psa would be 640 in 4 months.

I got chemo no 4 yesterday, and doc is now looking at if can be in TheraP trial being run in Sydney for either Cabazitaxel Or Lu177, one of the other, and I don't know how they plan to allocate either to a patient. 

But if I got acepted at all, and was allocated to Cabazitaxel and it to gives thre same useless and dismal result I seem to be having so far with Docetaxel, then I'd be a lot worse and I'd be done with the trial because AGFAIK, they don't allow tou to switch to Lu177 if Cab does not work.

I think that could explain why the numbers voluntering for the trial are low, ie, many would see that a trial like this will not give a benefit.

I can get Cabazitaxel instead of Docetaxel at my local public Canberra Hospital but I have no faith in the idea that it would work any better than the Docetaxel, which seems to be feeding the cancer, not hindering it.

So I guess my only hope now is to buy treatment from Dr Lenzo for Lu177 and / or Radium 223. 

But otherwise I am good health, and I cycled 17km to CH to get chemo and 17km home, and overtook 11 other cyclists riding home from work after 4:30. Today I did 20km, sedately.

Anyone else get a raw deal with Docetaxel? 

Patrick Turner.

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stevecavill

Hi Patrick,

sorry to hear your current struggle.  From my reading, cabazitaxel is specifically designed for your situation, i.e. when docetaxel has failed.  So I wouldn't be immediately pessimistic that cabazitaxel will fail just because docetaxel has failed.

The TheraP trial is randomised trial.  i.e. you don't get to choose which treatment you get.

Steve

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Charles (Chuck) Maack

Recently came upon this for patients with metastases: https://tinyurl.com/ya3rske5 

 

Following by Charles Ryan, M.D. of the University of Minnesota but including some of my own comments.

 

Docetaxel appears to be quite beneficial for those with extensive disease but not so much for those with less extensive disease. The line in the sand, in that case, was four metastases.

 

So, if there are four locations of metastases, consider beginning with carboplatin plus cabazitaxel up front in patients with high volume disease hoping to capture some patients with DNA repair alterations who may benefit from the early addition of carboplatin.

 

OR,

 

Opt for chemotherapy with docetaxel/Taxotere accompanied by ADT medications.  If carboplatin would serve the purpose explained above, then carboplatin should also be considered to accompany the administration of docetaxel. 

 

I only typed this separately regarding volume of metastasis at diagnosis of prostate cancer, but it is important for all reading to open the reference above and read in its entirety since there is so much more explained important to be aware regarding the patient’s family history and other health issues that must play a role in the treatment being considered.

 

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Patrick Turner

Hi to stevecavil, Charles and other readers,

The trial seems to be just a trial, not well thought out stratergy for treatment for what seems like a failure of Doctetaxel in my case. I've got countless small mets, and my only side effects of cancer is the treatment for it, not from the disease itself, so far.

The first 3 steps up the chemo ladder are Docetaxel, then Cabazitaxel, then Carboplatin, and I don't know the fourth, ( Terribillium ? ? ).  

So I guess more chemo load could be tried, but there's the dreadful prospect that fails to leaving me too late to get a benefit from Lu177 or Ra233, which BTW will have side effects that are unpleasant, but are they worse than the ruination by chemo?

I am continuing ADT in form of monthly Lucrin injections, but these are not doing very much because it only shuts down balls, and my balls are probably in no state to ever resume production of Testosterone again. Cosadex and Zytiga failed.

 

I have a friend in Melbourne whose Docet chemo failed in 4 months after a real good start, Psa 40 to 2 after 3 infusions, and he's talking to a doc at Garvin Research about what next. His ADT failed so spectacularly with Lucrin lasting 3 months, and Cosadex boosting Psa 10 to 40 in a month.  But the "hoper docs" have put him on enzalutamide which does not seem to be working hence his talks with elite expert. Even experts are routinely confounded by patients cancers. All the King's horses and all the king's men.......

 

I predict the friend who is in a worse situation than me and who got there in 1/3 of the time I took may be told that he could do worse than see Dr Lenzo with his Lady Lute, and Sir Radium, if his Pca is still mainly all PsMa avid, and has not mutated to something else.  

 

My doc said its going to take me 6 weeks from referral to Dr Lenzo to get the first infusion, But it could easily really be 2 months, there are always delays when least desire them. so my Psa might then be 160.

Possibly my doc here will recommend a switch to Cabazitaxel which I would accept and he may still give me a referral to Dr Lenzo, because he has already said he would if I wanted it, but the protcol for Medicare is a bit stricter than what docs wanted to do, and when a switch from Zytiga to Enzalutamide was mentioned some months ago, a Registra was there at my meeting with my Specialist Oncologist, (  Boss Doctor ) and said that cannot happen because there cannot be any such switch, its against rule under Medicare, and he didn't want a black mark on his record, and feared they "would not get away with it". They just said I should try Docetaxel. I had not much more knowledge of its effects or outcomes than I have now, so I accepted it, rather than dither about knowing it could be 2 months to Dr Lenzo. My Oncologist was away OS last week, but has returned, and I have sent them a copy of my Psa graph where all can see in a glance the tiny blip on graph that was the total effect of Docetaxel so far. 

Whether adding Carboplatin to the cauldron of potions may be a very unknown method at my hospital but I sure will run the idea past them when my next meeting with Oncologist in 2 weeks, when they will have to decide if Docetaxel has really failed ( on its own ) if Psa is about 50. If Psa is less than 40, maybe there is hope for it.

Only uncertainty is definitely certain.

 

Charles mentions family history relevance, and I knew Oa killed my father's mother, and one of my sisters at 60, and other sister seems to have survived her Bca after double mastectomy + chemo. Melanoma got my father at 60. I was just waiting to get cancer when it turned up. I know families where all four brothers got Pca, so the youngest was sure to get his RP soon as possible but he never talks about it, not friendly, the Island Man.

My records of my family history is incomplete and not one doc ever discussed it with me.

If ppl go back 50 years they often didn't know what killed older relatives, they just know they just got sick and died often at 45 onwards.  

 

The road that led me here was a Medical System that missed the opportunity of early diagnosis at Psa less than 3.0, when nobody at all thought I ever could have had any bother, except myself, worried already, after reading Pca chat groups in USA well before my diagnosis in 2009. All these groups died often because the guys running them got sick with Pca and died and could not maintain the groups, and keep out the viruses that destroyed their operation. Some the guys insisted their docs refer them for biopsy at Psa 3.0, and some had 3 biopsies before Pca was found, with maybe only a pea sized tumour at PG, and when removed, the RP worked, and the man had avoided the spread that seems to occur before RP when Psa has gone higher, OR the cancer just does not make a lot of Psa while it turns into a monster Gleason 9 like mine at Psa 5, and inoperable. 

Many men didn't mind facing reality and saying "Goodbye Rodger".

 

By 2016, docs thought  my Pca was mainly in PG, likely to spread locally, so I was sent to Epworth in Melbourne for Calyspo stereotactic IMRT to increase total RT to PG from inadequate inital EBRT of 70Grey in 2010 to 101Grey. To do this, 3 radio beacons each about 3.3mm dia x 10mm long where inserted with a large needle to PG, so than RT could be guided properly. But not one expert doc had considered the fact I'd bleed badly if any PG tissue ws cut because EBRT ruins the healing of healthy tissue. So this simple op caused a 2 day hospital stay with a catheter and bleeding didn't stop for another week. So where did the blood go? Nobody answered the question. I was the first patient in Oz to get Salvation Radiation, for where a man gets a second lot of RT to where his initial form of treatment had been EBRT, and no RP. This idea was recommended by a Dr Schultz in USA after he published in AJCM in 2011, but there were no trial results, just a statement than 47 men got huge benefit, but had there been another 300 who didn't? Another question not answered, and I gave my UNINFORMED consent based on a hunch and hope. It turned out that my PG is a mess, sure, but Pca does not seem to have gotten worse there, and I am still continent after 101Grey. Rectum damage is OK because of use of gel pad used between PG and rectum.

Up to that time, a PsMa gallium scan showed only 2 upper lymph mets, and they were also radiated in 2016 with PG. I don't know if this "pencil beam" RT did any good or not but last 2 PsMa scans in 2017 and this year showed no spread to organs, so I think the Epworth Job seemed to work, except for the bleeding issue, and that may have been the time when my Pca at PG was allowed to flood my veins and arteries with Pca from the cuts for beacons, and that's when speard to bones may have begun, ie, the doctors spread my cancer. There is of course not the slightest possibility than any doc would admit he made any such mistake, let alone give me a refund.

So while most of my mind thinks my Pca in bones began before diag in 2009, I also think Salvation docs could have begun it because they punctured my previously radiated PG with a great big needle, and nobody knows hpw many times they stabbed it to get beacons in correct position while awkwardly observing with ultrasound.

I was lucky they did not cut through my prostic urethra with a needle because I could have ended up with permanent damage and needing a suprapubic catheter and plastic pee bag.

( about 45,000 Oz ppl wear bags for pee and poop for a wide variety of complaints and histories ).

 

So the relevance of whatever is your history fades to zero as time goes on and ONLY what is immediately in front of you matters. Doc ar Epworth said I should not read the Internet about Pca, it only confuses ppl and makes them all anxious and upset. I replied to his email that my talking to doctors has the same effect, but at least this doc at Epworth was happy to have a long email conversation, maybe because he knew I knew I was the first to have what he proposed, was not dumb, but preapared to take a risk, knowing that other shit would happen if I didn't.

I don't know now if Epworth uses the same guidance for their gee-whiz radiator for re-radiation of PG. Its OK for patients who have already had RP and my Melbourne friend said I had nothing to fear, Epworth had helped him after his RP failed. But of course since then, its less clear than his following RT helped much, Pca marched onwards..... 

Try for a nice weekend eh?

It is day 2 after my chemo and I think I'll do a small cycle ride OK. I did one yesterday, very nice spring day.

Patrick Turner.

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Kezza2

Just a quick update.  PSA was 48 before I started Docetaxel, and now just before the 3rd dose it had fallen to 28.  Not bad for two doses, so I guess it is working for me.  Just had the third dose so we will see how it goes.  I have taken the "opinion" of fellow members and chew ice during infusion, wash my mouth with Bi-carb and salt solution several times a day, and apart from loosing my hair I have had very few side effects.  I should qualify that:   in the 5 days leading up to dose 2, I had radiation on my spine T4 to T8, and the reaction of the radiation and the chemo gave me a fairly severe radiation burn to my gastro-intestinal tract and through to my chest which developed a painful blistering rash.  But these have now subsided and I feel great again.  Yoohoo !!!

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Patrick Turner

A man's reaction to Docetaxel will vary, and I am having chemo 5 next Thursday.

I'm 71, and I was cycling up to 270km a week before chemo, but chemo soon stopped me doing more than 100km a week, and I could only do 35km during first 7 days after chemo.

The neuropathy and muscle pains tend to reduce and by 2 weeks after chemo the side effects are much reduced.

In week before each chemo shot I am nearly back to normal, and can cycle 18km to / from hospital.

I didn't have much hair before chemo, and most of what I had departed.

Taste is affected in first week, skin goes dry, and small cuts don't heal well, but I try to stay busy in shed as much as possible. So although chemo is a Royal PIA, its a necessary step to take for many.

In my case, I have some visceral mets and bones have countless mets.

Trouble began in 2005 when Pca began, but Psa stayed low, and when it was 6.0, the biopsy in late 2009 showed Gleason 9 which was inoperable in 2010 so I got ADT and EBRT to PG. I guess many bone mets began way back then and all were suppressed with ADT until it failed in 2016, and in 2017 2nd PsMa scan showed them up, small, but only a few, and bu 2017, lots more, and this year lots more and bigger, so the Cosadex and Zytiga added to ADT did not seem to keep bone mets suppressed.

I began Docetaxel 11 weeks ago with Psa 12.0. Psa is now 45, and is suspected as being complete failure, although over last 2 weeks Psa rise was only 40 to 45, when I expected 60. I wanted to get something done to stop bone mets growing and then getting micro-fractures in bones which leads to bone pains and is in effect, a crumbling of your skeleton, and when you have so many mets, trying to stop them all with EBRT is impossible and only systemic RT seems to be any good. 

So I asked for and obtained a referral to Dr Lenzo for Lu177. 

There is theraP trial for either Cabazitaxel or Lu177 but nobody gets to choose which one, and they won't change from one to other if one fails. I saw no value in that, and it might explain why the trial has not attracted huge numbers of men because they don't see a likely benefit. So I shall pay for Dr Lenzo from my savings.

I know guys who had huge reduction of Psa with chemo, only to find that after 4 chemos the Psa zooms back up again. Docet used to be considered end stage treatment that gave a few months and there was onlt paliative care following, but now there's Lu177, and Ra223. We can't access Actinium225 yet.

All such things have side effects and give a dry mouth and maybe dry eyes and plenty of ppl have these conditions from chemo or RT and a friend 79 has had dry mouth since RT and chemo for a neck cancer that he escaped from about 12 years ago.

I would advise anyone on chemo to expect that it will not work forever, and soon as Psa begins to rise a man should look to something else.

The trouble with Pca is that many might have RP, or have RT as primary treatment, and Psa will noze dive to tiny figures, but the disease is often well established in maybe hundreds or thousands of tiny micro mets which don't show up in scans until many years later when they have grown big enough to see, and often after ADT fails.

You can never assume you have beaten Pca.

But many men who get RP when PG tumor is pea sized, Gleason is 5, and has not yet spread will never post here because they have avoided the Long Fight and the $200,000 cost to Medicare.

 

We should be pleading with Govt to change threshold for full PG inspection when Psa reaches 2.5, not 5.0.

It is very bad preventative medical protocol to ignore a PG until Psa reaches 5.0.

I have a cousin 73, and he's probably not going to get Pca and his Psa has not exceeded 1.2.

Other men who have no troubles with PG will have Psa 0.7 at 40, and 1.0 at 60, and this idea normal is between 0.3 and 5.5 is bullshit. 

Patrick Turner.  

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Kezza2

Patrick,

I have been battling PCa for almost 19 years now, so we are old "friends".  I agree that everyone will react differently to docetaxel, but I wanted to convey my positive results so others facing this should not loose heart.  It does work for some men (and women - my wife had it for breast cancer also) and others should not be put off accepting the recommended treatment because it doesn't work for everybody.

I also agree with your comment about early and regular testing.  Too often on this and other sites do we hear of men just diagnosed with PCa and it is metastatic and often MCRPCa.  We just do not seem to be winning the battle to get men to have PSA tests BEFORE they turn 50.  I have three sons and they were reluctant but have all been tested before they turned 40.  We should ALL be promoting testing to every man we meet.

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Kezza2

Comrades,

An update.  I have now had 6 doses of Docetaxel.  Had my PSMA PET scan this week using 18F as the tracer.  Results are impressive.  I have no active lymph involvement anymore (did have several lymphs involved in pelvis, throat, and chest) and all the small mets in my shoulders that popped up after abiraterone failed are inactive.  I still have small indications of mets on my manubium, spine, and skull, but they are greatly reduced.  Side effects are getting worse after each treatment, to the point my onc is going to "fine tune" the next three doses, and bring me in on day 4 for extra fluids to try to reduce the effects.  PSa is down from 42 to 14 before dose 6 and on that trajectory I expect PSa to be below 10 by the time of the next dose.  So apart from the side effects that floor me from day 4 to day 10 after treatment, all in all I am very happy with the results of docetaxel as are my med oncs.  Not a bad Xmas present.

Keep up the fight.

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alanbarlee

That's a great outcome for you, Kezza - and very encouraging for some of our members who may be either skeptical about the benefits or  fearful of the side effects of graduating to chemotherapy.

 

The use of docetaxel early in the course of systemic therapy (i.e. in conjunction with the start of ADT) has become a standard of care, based on game-changing clinical trial results in the USA and in Europe.

 

It will be really useful to hear the detail of the tweaking that your medonc decides to introduce in order to minimise your side effects. (These are reported to often be fairly mild in early combination therapy, especially when the men so treated are younger and fitter).

 

Cheers,

 

Alan

 

  

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Colin Glover

Wow Kezza2 thats a great result.

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Patrick Turner

Not a bad result Kezza. My onco bluntly said chemo will fail, but it was the the next standard step after ADT with Zytiga had failed, so I said "OK, let's go, but if or when it fails can I switch to Lu177?" Yes was his answer.

Psa before chemo was 12, then it gave big flare +300% and then dropped to 27, then after 5 chemos it was 45, so I asked for referral to Lu177, and doc admitted Docet had not worked very well, as he had predicted.

A month goes by after last chemo to first Lu177 and Psa dropped to 25. 5 weeks after first Lu177 Psa ws 25, so probably, after quitting chemo, Psa went through 25 to some lower number then has risen after first Lu177, so the Psa trend is unknown. The doc handling Lu177 said I had 2 options, wait and see what happens to Psa before booking more Lu177, or assuming Psa is too dangerous, just stay with original 8 week schedule and have next Lu177 on 4th Jan 2019, and I opted to continue. Its too early for scans and Psa has less meaning with bone mets, and Lu177 tends to be quick to act on soft tissue mets, and I have a few /many in lymph nodes, but I have many bone mets where Lu177 takes time to act. 

I have no idea if my present treatment will give a good long extension to QOL or to lifetime.

 

Meanwhile it is 10 weeks since last chemo and the side effects have all reduced to low level and this week is the first for 5 years where I have cycled over 300km for a 7 day period with some excellent average speeds I have not seen for 3 years.

 

Before beginning Lu177, I had full body CT and PsMa Ga68 ET and CT and some tumours had further developed during chemo.

My original tumour in PG ws a Gleason 9 with 9 positive biop samples in late 2009, but Psa was a low 6.0. The darn thing had probably spread widely before the attempt at RP in April 2010. But docs found too much Pca to remove safely, so I got switched to ADT and RT. The EBRT hardly worked at all but ADT kept Psa low, so slowed both the original PG tumour plus the mets which only able to be seen in 2016, about 6 months after the PsMa Ga68 scan method arrived in Oz, at Melbourne.

 

Pca teaches us that from little things, big things grow. Psa can be reduced from 1,000+ to < 1.0, but that does not mean its dead, and there have been cases where its up and down by this much range several times and the patient is weakened by each successive treatment, with cycles of hope to despair etc. 

 

Official Lu177 mean extension of life is 14mths. Chemo gives mean best 20mths, questionable because they say the flare at Psa after initial chemos indicates efficacy. I read that where max flare is about +400%, expect life extension of 8 months.

But I know a man who had Psa 40 before chemo and it went to 2.0 after 3 chemos and after 10 chemos it was back up to 30+, so he had DNA tumour analysis and last I heard he was on chemo used for Bca plus Xtandi.

He got only 3 months with ADT, and when they added Cosadex, Psa rapidly rose so it fertilsed Psa growth. Not all men in Lu177 trials have had their lives extended.  

So I know the journey with Pca is never ever certain or predictable.

Patrick Turner.

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