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Chalkie

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I have now had 20 chemo infusions 

7 Doxatel

12 Cabazataxel

1 Carboplatin  (yesterday)

 

Only yesterday can I remember ever being told to sit on the toilet for all ablutions and always flush with the lid down.

 

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alanbarlee

G'day Chalkie,

May I respectfully suggest that your new toilet regime could be confusing. During your ablutions you might find yourself sitting on the toilet with the lid down - and you might forget to switch off the light because of the unfamiliar glow coming from the bowl - when the lid is hopefully up!

Best wishes, and thanks for sharing your trail-blazing chemo adventure with the rest of us.

Alan

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I'm at the Icon Centre in Adelaide for cabazitaxel, and there is a notice in all the toilets telling us to do this. At the first treatment one of the nurses also told me I should do it.

But this is my third chemo program, and the first time I have come across it. The others were in Sydney and Melbourne, maybe we're a bit more risk averse here in SA.

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Chalkie and GrahamW

You have both had a fair amount of chemotherapy. 

Just wondering how effective chemo  has been for both of you recently.

How is your tolerance of chemotherapy today compared to when you had your very first round.

Best wishes

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Patrick Turner

I found no need to take special precautions in the loo while having chemo in 2018. I only had 5 shots of Docetaxel which was plenty to show my onco and me that it would be useless to continue because Psa quadrupled from 12 when I began it, and some new mets were seen, and some grew bigger in scans.

So I trundled along to get Lu177,which seems so far to have been far more effective.

But the biggest dreadful side effect of chemo is neuropathy in lower legs where they seem to not want to work properly and walking on gravel with bare feet is impossible.

But anyway, I cycled a total of 50km this am after 6:30 am and arrived at Canberra Hospital 50 minutes later because their café is open that early, and I averaged 24.1 kph for the 42 mins for 17km. So I seem to be improving despite lingering chemo side effects.

If I had had far more chemo than I had, I think I would have badly damaged myself. 

I'm still alive at 72, I can't complain too much.

Patrick Turner.   

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How is my tolerance now compared to first chemo round? That's a hard question to answer, as it depends on the drug(s) used, and my memory!

The first course I had was in 2006, straight after a radical prostatectomy. I was Gleason 9, with a seminal vesicle involved. Pathology indicated clear margins, PSA was <0.01, and the radiation oncologist didn't want to treat me with no evidence of anything to aim at, but I was offered chemo  as an adjuvant treatment. 

I was given 4 cycles of ‘MC’ (Mitoxantrone and Cyclophosphamide) as Docetaxel was not yet on the PBS. It's a long time ago, and I didn't keep a diary, but I think it was tolerated quite well. I remember being able to go back to work next day without much trouble. However that experience is probably not relevant now as it would be unlikely for those drugs to be used.

Docetaxel was the next drug, 6 cycles in late 2015 - early 2016. PSA went from low 20s to about 2.5 with this treatment. I had many of the usual side effects, although I tolerated the drug quite well based on the blood tests and my overall well-being. I had hair loss, fingernails splitting and chipping, lost a couple of toenails, some nausea, fatigue, weird sense of taste for a while, but nothing too bad.

Now on cabazitaxel I am 6 cycles into a planned 12, and it's certainly easier than Docetaxel. No hair loss, nails are OK, loss of taste is there but not as bad, but I feel very flat and just a bit sick for most of the first week after each dose. Is it working? PSA is in the 30s and jumping around a bit although it has come down, but not providing much help to my oncologist who will get some more scans done soon I think.

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GrahamW

Thank you, and may you continue a successful treatment regime.

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Side effects of chemo:

Doxetal:  At age 70 I had 7 infusions.   Initilally PSA dropped from 40  to 20 then up to 80 after 7.

Side effects were taste down - wine became sour, food lost its taste, hair out after a couple of infusions, finger nails became septic one by one. Suggest that precautions such as thorough cleaning and scrubbing nails and soaking in salt water throughout treatment may help

Bonus was my moldy toe nails started to look a lot better and continue to be healthy

Mild fatigue

Then I went on to the xtandi which dropped PSA to 10 and then it too lost its effectiveness.  

Next was the Lutetium  trial - didn't help and after 4 infusions (6 weeks apart) tumors were not responding as expected - but I did win the C grade championship during these infusions. 

Cabazetaxel   12 infusions starting in May 2019  PSA on the rise and up to 2500 by the fourth infusion and them it started to come down hitting a low of 1180 at about the 9th infusion and from then on it bobbled around 1800 2000 and was at 1825 last week.

Side effects were fatigue and loss of appetite as the chemo progressed. Mouth ulcers a big issue (this may have been exacerbateted by radiation to jaw.   Contracted Pneumonia in Sep.  Temp was over 38 so off to emergency at Box Hospital. Straight in and off to x-ray and them to oncology ward - and infused with various antibiotics.  Out in 10 days      Red Blood count down. Some pain - possibly related to old age, arthritis and maybe some cancer. Pain management plan in place.     Since the hospital stay I now need to use a cart to get around the golf course and gym regime has been reduced - lighter weights and with cardio on the bike, time and resistance halved.   Appetite continues to fade and over the 12 infusions I lost 14kg.  Down from 85kg to 70 - BMI preferred but I have lost strength and 50m of the Tee.  Hair loss has been minimal and with friends and family have being  very supportive and during Movember my moustache raise over $9000 placing me 38th in Australia out of well over 100,000 mobros. 

 A bonus has been that I am back to reading novels, a comfort when resting.

 

Started Carboplatin 9/1/20 I am told the nasty side effects may kick in later in the treatment regime - 6 infusions 3 weeks apart have been scheduled.

 

At 73 I am feeling old.  When I was 59 I was given 2 to 5 years. So I am on profit and I class my self as being lucky that treatment options continue to be offered .  But when I saw how healthy my twin brother was when he visited on Tues it was a bit demoralizing.   

 

 

 

 

 

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Peter bastow

I've had 13 lots of chemo over 10 months, a week of radiation treatment, now I'm on hormone treatment, not coping with the hot flushes, mood swings and feeling fatigued, the treatments to date have been successful in managing my symptoms, my PSA went from 380 to 11.5, I know there isn't a cure, I feel like I have a time bomb inside of me. Currently I'm thinking why did I have treatment, it's always the side effects that cause problems, people just dont get it. I do my best to keep up my appearance, people say ,"your looking well" I always think if only they knew whats going on under my mask, I haven't told a lot of people that I have advanced cancer, those I have now treat me differently 

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Chalkie, a big thank you for your response and details of your treatment.

Congratulations on your Movember fund raising. An absolutely fantastic effort.

 

It is amazing what some men can achieve in the face of advertisity. 

Today, yourself, Patrick Turner and GrahamW must surely be inspirational to a newly diagnosed advanced prostate cancer patient. 

Sorry to hear Peter that you are not tolerating hormone therapy all that well. Easy for me to say, hang in there, but I am not suffering like you.

Doesn't help you much knowing others are in the same situation as you. Wish I could be of help.

Maybe someone out there has a suggestion.

Personally, I haven't progressed beyond ADT (Eligard every 28 days) at the moment. As a result I appreciate your experiences being shared with others.

 

May a new treatment, or trial, become available to keep you men going, with quality of life, well into the future.

My very best wishes to you all.

Nev 

 

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alanbarlee

G'day Peter,

 

It's an unfortunate fact that, while  men find the side effects from ADT manageable, others do get knocked off their perch by it.

 

A couple of thoughts on the symptoms:

 

Hot flashes affect most of us to some extent. Reducing high GI carbs (sugary of flour-based foods), especially at the preferably early evening meal, can help, as can a loose breathable shirt and air movement via a fan. Mood swings and irritability can be helped by an anti-depressant prescription from your GP, and fatigue is best handled by regular aerobic exercise, and by giving yourself permission to have short nana-naps when you feel like it. 

 

Have you considered trying a switch from the usual GNRH agonists like Eligard to Firmagon - an antagonist (i.e. works a bit differently)? The side effects are a bit different - and a bit of injection-site discomfort for a day or two is not uncommon - but this class of ADT can be a good option for some. This might be worth raising with your oncologist.

 

Next, are you considering Zytiga or Xtandi in conjunction with your ADT (after your chemo treatment is finished)? Zytiga needs a bit of steroid, and Xtandi can increase fatigue a bit, but both these drugs are usually very effective in controlling the disease, with relatively benign side effects. Again, your oncologist would need to be consulted on this.

 

If toleration of your current treatment is a really critical issue, then a third angle might be  clinical trials, e.g. 177-lutetium-PSMA617 (a radiopharmaceutical infusion) without or with combination with other new drugs .This approach would be supported by very sensitive scans to determine your likely responsiveness, and you would get  the best possible monitoring and care.

 

Finally, the era of protein and gene testing is here, and you can now be tested for mutations in things like AR-V7, BRCA2 and a number of others - which can guide the choice of therapy at an individual level. There are some promising new and customised drug treatments like Lynparza and Keytruda that are being trialled in this context.

 

All of this is to indicate that there can be more than one way to skin the cat: there are plenty of emerging possibilities to chat over with your oncologist if you're unable to tolerate a given treatment, and to move to if a particular treatment should stop working.

 

Hang in there, Mate - there's likely a solution somewhere in there!

 

Cheers,

 

Alan 

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Thanks Nev for your best wishes. I'm doing OK but we are all a bit different. However I'm with Chalkie on the problem of length off the tee. It puts a lot of pressure on the second shot, when it used to be a mid iron but is now a fairway wood.

 

One thing I forgot to mention in my comments on tolerance to Cabazitaxel is that I tend to get quite dizzy in the first week or so after an infusion. It seems that may be due to reduced red blood cells, and in fact a couple of times the blood count been down a bit when I turned up for the next infusion. Dizzy as in don't stand up too fast, and needing to sit down after a bit of exertion. It's annoying.

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GrahamW I am interested in what happened to you between your chemo in 2006 and next treatment in 2015? How long did your psa stay low, etc.

 

I had an RP in 2017, Gleason 7, seminal vesicle and nerve involvement, positive margin. Seven weeks RT last year and on 6 months ADT now. Next test in Feb.

Thanks

Brian

 

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Hi Brian - it's a long story, but in summary it has been a lot of Zoladex hormone therapy plus some radiotherapy.

Late 2006 - late 2008: 8 x Zoladex 10.8mg implants (that's one every 3 months). PSA <0.01.

Late 2010: PSA rising, all the scans done (nothing detected), 2 x 10.8mg implants. PSA again not measurable after these.

Late 2012: PSA rising, 2 x 10.8mg implants. PSA fell again, not quite so low but I can't remember what it got down to.

Late 2014: PSA rising, 2 x 10.8mg implants.

Early 2015: PSA still rising, Zoladex failing, off to Peter Mac in Melbourne for a PSMA/PET (gallium-68) scan.

March - May 2015: Radiotherapy to attack the spots shown by that scan. Three-monthly Zoladex continues. PSA falling.

September 2015: PSA still falling, Zoladex stopped.

June 2016: PSA rising again, had another PSMA/PET scan. This showed too many mets for more radiotherapy. Back on Zoladex to see if it would somehow work again, but it didn't, so then came the Docetaxel.

Between the Docetaxel and the current cabazitaxel I had a bit over 2 years on Xtandi (enzalutamide). And always Zoladex every 3 months plus Xgeva (denosumab) for the bone mets.

I have had so much Zoladex by now that I tend to forget about it (except when the stab is imminent). There are no side effects from it that I can identify any more.

 

 

 

 

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