The million dollar question

User

Posted 22 Feb 2024 at 15:48

Hi Phil, wondering how you got on with the second round of Chemo ? Hoping its going well and the danged Cancer has been forced back into hiding.

Had my blood test today , see consultant next week. Bit nervous as my PSA went up last time … 😬

Take care

Phil

User

Posted 23 Feb 2024 at 07:38

Hi there

Tend not to give to many updates on thread but do keep my bio up on profile.

Had 3rd session a couple of days ago,coping well thanks,oncology appointment with PSA results in about 3 weeks should find out more then.

Thanks for getting in touch and good luck with your results,it's a stressful time waiting to see if your PSA is up or down.

Regards Phil

User

Posted 14 Mar 2024 at 16:11

Hi guys

Update time..4th chemo (docetaxel)done and coping well,had onco appointment today.PSA down to 23 from 26 expected it to be more but my last PSA blood test was about a month before treatment started so it would have probably risen more,I'm led to believe that PSA lowers slowly with chemo and at least it's going down not up,onco seems to think that because I'm coping so well with the treatment that he may up the cycles to 10 rather than the 6 I was initially put on,is this normal?

I'm thinking the more poison they pump into me the longer it will keep it at bay,am I right in thinking that?your thoughts would be welcome.

Stay strong everyone regards Phil

User

Posted 14 Mar 2024 at 17:01

Hi Phil. I would take a reduction any day, it’s a good indication. Don’t know about the increase in cycles , but must be good if he thinks you can cope with it ok.
Best of luck , fingers crossed for a nice reduction next test.

Hope you’re coping ok emotionally as it’s a roller coaster ride. Me and the missus had a rare cry together last night . Sometimes you just need to let it out .

Take care Phil,

Phil

User

Posted 14 Mar 2024 at 20:59

Originally Posted by: Online Community Member

I'm led to believe that PSA lowers slowly with chemo and at least it's going down not up

onco seems to think that because I'm coping so well with the treatment that he may up the cycles to 10 rather than the 6 I was initially put on,is this normal?

Sometimes, the PSA actually rises on chemo - think of it as the cancer screaming as it dies.

Yes, 10 sessions for men who are tolerating it well. We have had men here who went on to do it again - so 20 sessions in total - and one member who said he had done docetaxel 4 times over a period of a few years (so 40 infusions!)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 04 Apr 2024 at 08:31

Hi guys

Just a quick update,5th chemo (docetaxel)cycle completed yesterday,just waiting for the steroid crash/fatigue,metal mouth and few aches and headaches to kick in but should be passed by Tuesday/Wednesday of next week if the other 4 cycles are anything to go by,next onco appointment and PSA results day after next cycle (in 3 weeks).

It was confirmed yesterday that my original 6 cycles has been up to 10 cycles,onco feels that I'm coping well with the chemo and thay want to blast it with the full 10 and I'll second that.

Stay strong everyone regards Phil

User

Posted 04 Apr 2024 at 09:25

Good luck Phil. Let’s hope this gives the cancer a bash on the head. Also hoping you feel ok through the side effects this time. 👍

Phil

User

Posted 04 Apr 2024 at 09:57

Nice one Phil. Some hope for us following behind you. Keep on gunning

User

Posted 04 Apr 2024 at 10:07

Originally Posted by: Online Community Member

Stay strong everyone regards Phil

It's your strength Phil, that is an inspiration to us all. Thank you.

User

Posted 25 Apr 2024 at 18:25

Hi all

It's update time,6th cycle of chemo done (docetaxel) 4 to go,PSA down from 21.5 in march to 16 so heading in the right direction so pleased with that,QOL pretty good.

Advice other people to keep a diary of symptoms and how to pace yourself for the 1st week after treatment I find that it helps.

Asked the question today with an appointment with my chemo chemist if the option when the time comes if I could repeat the docetaxel route again if I am coping with it so well and it is lowering my PSA she said it's not the norm and cabazitaxel is the next route but that may change when the time comes because new treatment are being released all the time,I shall ask the question again at my next oncologist appointment and may request a repeat course not ask.

Stay strong all and keep fighting the fight

Regards phil

User

Posted 25 Apr 2024 at 18:48

Thanks for update Phil. You’re doing remarkably well and keeping the faith for those of us behind you. I congratulate you for that on its own. All my very best to you and all fingers and toes crossed for you and a new treatment. 💪

User

Posted 25 Apr 2024 at 19:48

Originally Posted by: Online Community Member

That might be the stance at that particular hospital. However, we have a number of members of this forum who have had 2 or 3 goes at docetaxel and one member who says he has had 10 lots of 6 rounds!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 25 Apr 2024 at 21:39

Can only echo CJ's comments Phil. great update my man and so glad to hear your PSA has dropped.

Stay as cool as you always can and will be.

Lots of love brother.

Jamie.

User

Posted 26 Apr 2024 at 08:34

Thanks for the comments guys and I wont drop the discussion with my oncologist about giving docetaxel another bash if after completing my 10 cycles the cancer has been put to sleep for now,why shouldn't I be given the chance to try it again if it worked the first time round?if it doesn't work fine I'll take that and we move onto cabazitaxel.why should I throw this tool away never to be used again when it has preformed well and move onto to the next (which there isn't a lot left in the box)!!

Phil

User

Posted 26 Apr 2024 at 09:00

Hi Phil. Great news the Docetaxel is reducing your PSA so soon. And also excellent you are coping well with it.
We are all rooting for you 👍.

Take care

Phil

User

Posted 01 May 2024 at 09:43

Hi Phil. Well it appears I have climbed into your rickety inflatable boat. Is there room for me 😁… ?

Start Docetaxel in 3 weeks as the Abi obviously wasn’t working. I think I spotted on the consultants notes about my PCa being Hormone Independent now. So Orchidectomy would be pointless.

I was told 3 weekly cycles and up to 10 of them. I didn’t ask but how rigid are they with that as we’ve got 3 weddings in the UK this year and one in the US . Just hope I can still get travel insurance as it renews in a couple of days so I’ll need to tell them the changes.

Also are you using a cold cap ? I still have pretty good head of hair and it would be a shame to lose that along with everything else.

Anyway, hope you are still coping with the side effects ok . Interesting about keeping a diary , I will take that onboard.

Take care,

Phil

User

Posted 01 May 2024 at 17:54

Hi Phil

Loads of room on the good ship prostate,sorry to hear about the Abi failing,I presume generic testing and olaparib wasn't an option?

You'll be fine on docetaxel it is well tolerated and proven,there was no need for a cap with me and I'm as bold as coot before treatment,a bloke wearing a T shirt last week in the treatment room made me chuckle it read "chemo cures dandruff"!!

On the holiday front my oncologist advised against foreign travel so insurance maybe an issue,but I go away regular in this country,mainly the weekend before my infusion and they are rigid with the dates so I've noted infusion days in my diary and work around them.

Hope this helps All the best Phil

User

Posted 01 May 2024 at 18:06

Cheers mate, I’ll climb aboard.

Never asked about Olaparib. My consultant and his team always seem to have gone through my stuff beforehand and know what they’re going to offer. I’m happy with the chemo knowing my PCa is likely hormone independent. Just was getting my head round accepting the orchidectomy and then it seems it would be pointless. I wonder what the PCa eats it not testosterone 🤔.

Bit of a bugger if we cant do US in August. Booked flights, Airbnb and a hotel already … I will speak to the insurance company tomorrow .

I will ask about the cap when they call to arrange the first infusion.

Keep well mate,

Phil

Edited by member 01 May 2024 at 21:12 | Reason: Not specified

User

Posted 06 May 2024 at 18:55

Hi Phil,

Good to hear you're managing the docetaxel okay 2nd time around.

Think we will be getting chemo for my husband,. He had abiraterone and when it stopped working, he was tested for BRCA 2 and was positive so is currently on olaparib.

Worked for about 8 months but psa has been going up since February this year and last week a lymph node in his neck swollen to a big size. It's been confirmed as cancer but waiting to see if it is prostate spread. They think it's likely.

Appt with onc this week and dreading him having to have chemo again but he did mange docetaxel okay last time.

I had read BRCA 2 positive men sometimes are better with Cabazitaxel or carboplatin but I don't know for sure?

After your chemo, have they said what happens, do you just stay on hormones only?

Edited by member 07 May 2024 at 17:23 | Reason: Not specified

Mrs MAS

User

Posted 07 May 2024 at 08:16

Hi Mrs mas

I presume the question of what happens after chemo is directed at me,theres so many Phil's on this forum lol,perhaps there's link 🤣.

It's a bit of grey area what happens next,I think I'll be having scans and x-rays after my last infusion,I will continue the prostap 3 monthly injection and I presume I just sit back then and wait for the lid to rattle and the PSA to rise,I've been told cabazitaxel next for me but I'm going to push to repeat docetaxel.

Regards Phil

User

Posted 07 May 2024 at 17:11

Hi Phil

Yes it was for you so thanks for responding.

What's your psa at the moment versus before you started the chemo?

Hope it's a while before anything changes for you.

Edited by member 07 May 2024 at 17:25 | Reason: Not specified

Mrs MAS

User

Posted 07 May 2024 at 17:13

John

I had 37 doses of full pelvic radiation and I have never suffered from incontinence.

I was a bit tired, that’s all.

User

Posted 08 May 2024 at 07:30

Hi Mrs Mas

December last year PSA was 27,didn't start chemo till January so it probably would have been higher,last blood test a few weeks ago it was 16,so going in the right direction,please read my profile for run down.

Regards Phil

User

Posted 05 Jun 2024 at 13:06

Hi Guys

I'm in the chair at mo having 8th cycle of Docetaxel so thought I'd update,no what to expect now with side effects if the last 7 are anything to go by,PSA is 12.3 down from 16 about 6 weeks ago which is great news and a weight of my mind,I don't mind saying I shed a tear of joy when the nurse told me.

Over the phone onco appointment in a few weeks so will post then and don't forget you can check out my story on my profile.

Take care gents and stay strong

Regards Phil

User

Posted 05 Jun 2024 at 15:56

You’re a hero Phil , inspiration to those of us behind you. Respect.

Stay strong 💪

User

Posted 05 Jun 2024 at 16:23

So pleased your PSA is still going down . I can imagine your relief.

Hope your side effects aren’t too bad now? Only 2 more sessions to go. As Chris says, you’re a hero buddy 👍

Got my 2nd next Wednesday. Onwards and upwards 😁

Take care

Phil

User

Posted 05 Jun 2024 at 17:14

Great news Phil. You're a star!

Mrs MAS

User

Posted 06 Jun 2024 at 07:46

Thanks for your thoughts and comments guys,but I'm no hero by far I mearly want to keep you updated on my progress and give hope to newly diagnosed stage 4 blokes that your time is not over!!like I thought a couple of years ago,but you can live on with cancer,it's not a bed of roses by far with a hell of a lot of up and downs sometimes more emotionally and mentally than physically and every body goes on different paths treatment wise.

Regards Phil

User

Posted 06 Jun 2024 at 07:59

Great News and attitude Phil, really pleased for you.

Onwards and (PSA) Downwards!

Derek

User

Posted 06 Jun 2024 at 09:00

Great to see your PSA going in the right direction Phil.

Good luck.

Kev.

User

Posted 22 Jun 2024 at 08:24

Morning all,little update time.

Over the phone appointment with onco a few days ago she is pleased with bloods and falling PSA,scans are being scheduled as coming to end of treatment, PSA to be monitored and next appointment booked in with chemo chemist in 3 months,all things considered I'll take that.

Regards Phil.

User

Posted 22 Jun 2024 at 08:46

Nice one, Phil.👍

User

Posted 22 Jun 2024 at 09:10

Absolutely great news Phil. Long may it last 👍. So pleased for you. Hopefully your scans will show reduced / static hot spots.

My PSA still rising but that was only measured after 1 chemo . But she’s booked my in for a Body CT scan this Sunday.

Have a great weekend .

Phil

User

Posted 24 Jun 2024 at 14:13

Hi Phil. Well I’m on day 5 from my 2nd Docetaxel. I’m still feeling exhausted and having to force myself to do anything. Feeling very weak especially my legs.

I’m also piling the weight on around my middle and my face is like a balloon … And obviously the clothes that fit me are less and less in the wardrobe 🤷‍♂️.

How does that stack up with your side effects chart Phil ? Any tips to stay fitter while feeling like this? Hopefully if I can get fitter I’m hoping I’ll lose some weight as well.

cheers, hope you’re doing good still 👍😎

Phil

User

Posted 24 Jun 2024 at 14:27

Hi Phil

Yes unfortunately weight gain is a side effect of the steroids,I've put just over a stone on and gone up a waist size in the last 12months,I've got many and yes the face has got rounder,my wife has said it's made me better because I was always a little gaunt looking but I beg to differ.

I try to eat healthy but sometimes I think what the hell,so it's a bit hit and miss with me,9th session for me Wednesday they fly round.

Ps I've found lately my toe/finger nails are cracking and not looking as healthy as they used to and also slight pins n needles, apparently this is also a side effect of chemo according to my oncologist.

All the best Phil

User

Posted 24 Jun 2024 at 14:51

Hi Phil. Thanks for your reply. It sounds like I’ll just have to poke up with the weight. I know it’ll go when I’m finished the chemo but it’s a pain having no clothes that fit … 🤦‍♀️

As for the face , yes all the wrinkles gone and some friends saying i look fine. But to me it’s Hamster face …!

Wow, you’re nearly finished. That’s brilliant. I hope you then get a very long time before anything starts off again. I’m not sure if Docetaxel can ever hold it back for good after one batch of 10. ???

I’ll keep an eye on my nails. Can’t stand skanky nails … Ugh…

Trying to eat healthy but just gotta have a coffee now with a couple biscuits… Oh well I had a banana earlier 😁

Take care,

Phil

User

Posted 25 Jun 2024 at 07:54

Hi Phil

Unfortunately that's not the case, Docetaxel just hammer's a few nails into the box lid,but the box will keep rattling and the nails will come lose and the lid will reopen,I've asked several times about using the Docetaxel nail again but there reluctant to use it apparently the docetaxel cousin is next cabazitaxel,my fear I we're running out of nails.

Regards Phil

User

Posted 25 Jun 2024 at 09:15

Hi Phil. Good analogy about the box. Let’s hope the nails are nice and long and hang in there for a while.

I’ve not looked up anyone else's journey on Docetaxel so haven’t seen how long we might get before the beast knocks the lid off the box again. Probably better not looking anyway. I’m at least looking at things for next year to do hoping I’ll still be well and fit enough to do them.

Spoke to one of my specialist nurses yesterday as they’d forgotten to order my Dexamthazone prescription and whilst on the phone asked if she could pass on the question of flying whilst on Docetaxel to my consultant team. Still clinging onto the hope they can give me something so we can fly in August. It’s only to Boston so not that long a flight. I suppose we could have sailed both ways … !

Had a CT scan Sunday but not got another consultation until end of July. So i wont know the results till then. Does seem a bit soon after my last CT and bone scan in April. Hoping they aren’t expecting to see anything extra going on yet.

Cheers

Phil

User

Posted 14 Jul 2024 at 18:54

Hi Phil, glad to hear you could cope with chemo, hopefully instead of using a Manchester screwdriver, they have used a proper screwdriver and things will stay in place longer

Take care

DaveH

User

Posted 15 Jul 2024 at 11:48

12 days after 3rd Docetaxel and still feeling tired enough to need a nap nearly every day. Also still getting breathless really easily.

Hoping I’ll lose some of the weight I’ve put on now they reduced my steroids . They said I could stop the daily Dexamethasone. So I’m only on Prednisone twice a day plus the Dexamethasone 4 times twice a day for 3 days around the chemo.

Had Covid last week which obviously didn’t help but luckily no cough, sore throat or headache. My recent booster may helped.

Got another bone scan on 19th so I’ll find out results plus the CT scan on 30th when my consultant calls. Hopefully nothing has changed… or should I expect the cancer to shrink a bit with the chemo? I’d obviously also like my PSA to start coming down soon 😁…

Cheers

Phil

User

Posted 18 Jul 2024 at 08:24

Hi guys

Its update time....10th and final Docetaxel chemo complete yesterday,usual effects to kick in the next couple of 3 days.PSA down again to 9.7,not as great a fall as the last few months readings but I've been told that the slower it falls the longer it lasts,maybe someone could confirm that,but it's all good for now,onco and CT scans to come over the next few months,so after 6 months of chemo and a 2 month window of opportunity I'm off to book a few holidays abroad,dam the expense,me and wife deserve it.

Stay safe and be strong all regards Phil

User

Posted 18 Jul 2024 at 08:28

Well done and good news your PSA has reduced. My goodness you certainly do deserve a treat following all that!

Are you on your hormone treatment only now?

Hope you and your wife have a very lovely time.

Mrs MAS

User

Posted 18 Jul 2024 at 10:10

That’s great Phil, so pleased for you. 10 sessions must seem like forever . I have my 4th next week.

Get out and book those holidays. You both definitely deserve it.

Why do you say 2 month window of opportunity? Is that how long before you see your onco?

Let’s hope it’s a long, long while now before anything starts to stir again.

Take care

Phil

User

Posted 18 Jul 2024 at 11:00

Hi Mrs Mas

Thanks for the feed back,yes for now it's 3 monthly prostap injections which I've been on for 18 months,there weaning me off the steroids over the next month and I daily take bone tablets.

Hi goalhanger

Thanks for your comments,onco chemist appointment and CT scan August,onco appointment September,for holiday insurance I'm classed as terminal so as you can imagine is tough but all clear do it but not an annual insurance,is very complicated,I'm hoping my PSA doesn't rise to quickly but with this disease I've learnt you can't plan to far ahead.

Regards Phil

User

Posted 22 Jul 2024 at 11:58

Hi Phil.
How’s the holiday planning going? Did you sort out insurance? Mines run out so I will need to talk to them regarding changed treatment etc.

Did you Onco actually say to you you are terminal?? . I suspect I am also classified as terminal but can’t imagine my Consultant actually saying that to me. Does it get you any benefits by being classified as such?

Now some questions about your chemo journey if that’s ok. How much did you energy levels drop as I can barely walk 100yds especially if it’s an incline. Mostly feel it in my legs. Also I suppose linked is that I get breathless quickly now. I fell over going up the steps in the stands yesterday at Brands Hatch. Scraped all my knee and felt just a little embarrassed.

I’ve also just piled the pounds on, the obvious hamster face and also my belly. I’m taking peppermint capsules for the belly as I also get pains in the left hand side stomach area. Stomach also uncomfortable as it feels really bloated. Plus of course most of my clothes don’t fit anymore…

I may start a new thread on Chemo Side effects …

Cheers.

Phil

User

Posted 22 Jul 2024 at 17:18

Hi Phil

Got a few trips in mind over the next few months,all clear do insurance but at a price,onco and specialist nurses class me as terminal for holiday insurance purposes.

Fatigue comes and goes 4 days after my 10th chemo I've been on my e/bike for just over an hour and done some light weights in the garage,yes I've piled the pounds on since starting my sessions and gone up a jean size,yes I also have the round face syndrome my biggest headache is the hot sweats during the night I haven't had a decent nights sleep this year but I'll pay that price if it keeps the big c away for a bit.

Regards Phil

User

Posted 28 Jul 2024 at 20:40

Hi Phil

Hope you do manage a few trips in between what sounds like quite gruelling treatment.

My husband has advanced prostate cancer and I have had long conversations with several specialist insurance companies. I was told that advanced prostate cancer is classed as incurable but only terminal when no further treatment is possible. I did question the difference! Hope that is not the case for you but if you are having chemo then that is treatment isn’t it or am I wrong? we are fairly new to all this so not very knowledgable about treatments. we are still wanting to continue travelling and have found that insurancewith.com do very reasonable rates for a single trip policy. My husband paid £3.5k for an annual policy when he was first diagnosed a year ago but we were in a panic as we had a cruise a week later! You can’t do a cruise without adequate medical cover. If you have to be airlifted off a ship it can cost £100K! Cant do that every year so single trip is the way to go.

Good luck!

Linda

User

Posted 29 Jul 2024 at 08:52

Hi Linda

Insure and go will insure you even during chemo as long as your not end of life (6 months to live)but that will be at a price.

I have finished my chemo(for now)so not receiving treatment,so my quote was cheaper,in there eyes they do not class me as terminal so I could get an annual insurance (which was a cheaper option for me)I paid just shy of 2K for an annual worldwide insurance.

Regards Phil

User

Posted 29 Jul 2024 at 10:16

Morning guys.

I will be trying to get my insurance sorted as soon as my chemo finishes end of November. Hoping to get away in the new year somewhere. Got our Avios to use up plus 2 companion vouchers…!

In the meantime we have a week down in Ilfracombe in September for a wedding plus a visit to Brother in law in Derbyshire sometime. Hoping I get to grips with this fatigue as it’s really knocking me out at the moment and could spoil anytime away…

Take care, enjoy these warm days we’re having at the moment. I’m lazing in the summerhouse while plumbers fit new rads downstairs. Just keeping out of the way 😁.

Phil

User

Posted 29 Jul 2024 at 14:27

That is not bad for an annual policy. It is a time consuming and depressing exercise getting insurance as many companies that say they cover cancer actually don’t for advanced prostate cancer. My husband is on hormone treatment and having 4 weeks of radiotherapy to the prostate starting Thursday. We have another cruise in 6 weeks and just hope he doesn’t have any adverse effects and we can still go. We will have to tell insurance company but oncologist thinks he will be fine to travel. He needs things to look forward and to.
I take it from what you say that once you are on chemo you don’t have any treatment at all between courses? We know so little but my husband doesn’t want to know - just taking each day at a time.

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