Bazza health update (for those long enough in the tooth to remember me!)

User

Posted 30 Oct 2018 at 07:52

Had a really rough time recently. After 8 1/2 years since dx, I’ve been asymptomatic but recently have had extreme left kidney pain. This was revealed to be inflammation of the ureta between the left kidney and the bladder caused by the increased swelling of the affected para aortic lymph.

My onco in France suggested commencing Taxotere in Dec Which I am still considering. However, and while my kidney begins to weaken in function, the French uro will be performing a JJ stent tomorrow to ease the flow of urine and hopefully bring some of the pain and inflammation down.

One good bit of news is that yesterday, I had my first French bone scan. It was a revelation. Floors and rooms so clean it was unbelievable and machinery so modern it was like being in a spacecraft. Also, results within 10 minutes of the scan in a personalised folder and all images in 3D too complete with an explanatory letter.

In my case, THE BONE SCAN WAS COMPLETELY CLEAR!!!

So, all I need do is get on top of these growing lymphs (not sure which way to go on these) and I’ll be feeling less maudlin than I was a few weeks ago.

The NHS is a wonderful thing. Now I’ve experienced both, I have equally respect for the French system too. No waiting, less anxiety which in my case means so much.

Any thoughts about lymph shrinkage (conventional medicine or alternative) from those in the know would be welcome.

Thank you all

Bazza (Barry)

User

Posted 11 Dec 2018 at 22:08

Bazza,

Great to see you posting again.

If you view my profile, you will not that I had 20 cycles of Docetaxel and although not always pleasant, in my case it was fine and I have lived to tell the tale.

I have now moved on to Abiraterone which is a breeze. I have even returned to work part time to keep the brain alert more than anything.

There is s very long way to go Bazza, so continue to enjoy life would be my motto.

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 12 Dec 2018 at 18:16

Fear is making you irrational. You can start chemo and if you don't like it you can stop. If you don't start, you are going to be on a downward spiral and may end up too ill to cope with chemo.

You feel well now so don't want to be ill - but you are comparing apples with pears. If you want to compare things, compare possible side effects of chemo with the side effects of being at end stage. I want you to take your chance now and be here longer.

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

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User

Posted 30 Oct 2018 at 15:37

Just lovely to hear from you as ever brother. And lovely to hear more positivity. I don’t have advice I’m afraid , but suspect mine will end up being a lymph thing. Keep strong friend and plenty of red ok

User

Posted 30 Oct 2018 at 16:35

Bazza, why the delay in starting docetaxel? It should certainly help in dealing with Mets in lymph nodes. It worked for me!

User

Posted 30 Oct 2018 at 21:14

User

Posted 31 Oct 2018 at 02:11

Brilliant news on the bone scan. John's onco said that if a PET scan showed limited mets in lymph etc he would be agreeable to directed RT as long as it wasn't in the region that had been zapped already - worth asking about?

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

User

Posted 31 Oct 2018 at 06:16

This is para aortic Lynn and now 60mm by 45mm So quite full of cancer. Surely it’s too dangerous so near aorta and risk of lymphedema. Only had SRT to prostate bed

Edited by member 31 Oct 2018 at 06:17 | Reason: Not specified

User

Posted 31 Oct 2018 at 09:03

Hhhmm - probably not ideal for IMRT - what about cyberknife or something like that? Chemo should knock it back well although you will need time for the stents to settle perhaps

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

User

Posted 31 Oct 2018 at 10:59

Hi Bazza

i also have para aortic lymph node involvement and had Chemo to try and sort them out which it did, only in my case they reappeared in different nodes in the same area, but you may be luckier than me with the chemo.

all the best

Roy

User

Posted 31 Oct 2018 at 15:57

Good to hear from you Bazza.

Glad the bone scans were clear and I hope you get the rest sorted out so that you can get on with your life

We can't control the winds - but we can adjust our sails

User

Posted 31 Oct 2018 at 17:06

Hi Bazza

Pleased to read that your bone scan is clear, it’s pretty much the same here in Italy after a scan I get a DVD with the results and a conclusion letter within 20 minutes.

I had SRT to 3 lymph nodes adjacent to my spine last December pet scans since then have shown they’ve disappeared, however my last PET scan a few weeks ago showed a tumor in a lymph node in my neck, I’ve just had that zapped with 8 Gy per day for 5 days. The set up was a bit scary as your pinned down to the table via a nylon face and shoulder mask. It takes 15 minutes breathing isn’t easy, I passed the time to stop my mind straying by counting.

I truly hope you get yours sorted soon.

Cheers

Stu

User

Posted 04 Nov 2018 at 23:00

Great to hear from you Bazza. The bone scan result is great. I agree with Lyn re looking at cyberknife or similar.

Ian

Ido4

User

Posted 11 Dec 2018 at 17:50

So, after nine years of fighting this thucking disease and being symptom free until July this year, I have now reached the stage where chemotherapy is necessary.

I have a kidney stent down to my bladder, I haven’t a clue what my PSA is as I’ve chosen not to know and on Jan 2nd, I commence six cycles of Taxotere each three weeks.

On 28th Dec, I have a permanent line put into my chest for the chemo, a CT scan for the baseline and bloods. A day before chemo, I have to take Prednisone, on the day and the day after followed by a daily 5mg dose for the duration of my course.

I’m really worried what this poison is going to do to me. I’m worried about extreme tiredness, I’m worried about hair loss, I’m worried that starting this marks the start of the slippery slope towards death next year. In short, I’m so, so worried. Is there any tangible benefit? Will it shrink my highly swollen para-aortic lymph nodes, will it set the cancer back? Will it deleteriously affect my quality of life? Will I ever b able to get on a plane and travel again? Is this the beginning of the end?

I need some positive stories guys and girls. I’m 56, have a good constitution, am fairly strong and apart from the kidney pain for which I take 10mg morphine three times a day, feel well and strong. Hell, I even told the bathroom floor yesterday.

Anyone who has direct experience of this drug and was on a similar regimen to myself, I would appreciate some feedback.

Thanks guys.

Bazza

Edited by member 11 Dec 2018 at 17:54 | Reason: Not specified

User

Posted 11 Dec 2018 at 18:02

I was on Prednisolone (the same immunosuppressant corticosteroid drug) for the last month for a skin complaint. The leaflet in the box said beware of mood swings and suicidal tendencies, and to avoid children with chicken pox.

In the event I had no side-effects whatever, and I hope you are the same. Of course, now I have stopped it I am itching like mad again!

Best of luck with your chemo.

Cheers, John.

User

Posted 11 Dec 2018 at 20:05

Best wishes Bazza. My fingers will be crossed. I’d be asking all those questions too. I know it’s not an exact science and they don’t like to guess, but I’d want to know if the benefits outweighed the loss of QOL and for how long. I guess when you get this far you get very scared as you say , and just want to try anything. Good luck friend

User

Posted 11 Dec 2018 at 22:08

Bazza,

Great to see you posting again.

If you view my profile, you will not that I had 20 cycles of Docetaxel and although not always pleasant, in my case it was fine and I have lived to tell the tale.

I have now moved on to Abiraterone which is a breeze. I have even returned to work part time to keep the brain alert more than anything.

There is s very long way to go Bazza, so continue to enjoy life would be my motto.

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 12 Dec 2018 at 00:08

You may recall that Stan not only survived the chemo at the age of 79/80, he went on to revisit India and then bought a new tent for his long camping summers in France.

I know that he was an exceptional guy but he wasn't superman. Of course you will do this and hold it together, you have believed at every stage that you would not be able to cope with the next stage and have exceeded your own limitations every time.

Plus you know I would be pretty p**sed off with you if you didn't give it your best xxx

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

User

Posted 12 Dec 2018 at 07:03

Bazza - gotta keep at it and some of us have only mildly annoyed Lyn, the thought of her "really p****d off" would be motivation enough for any man!!

User

Posted 12 Dec 2018 at 08:24

Hi Bazza

Tony has just had his 3rd chemo infusion last Friday, same regime as you and with injections in stomach for 5 days after each chemo of 5ml of nivestim.

I was also petrified of the side effects and qol he would be getting, so far he has not lost his hair and has no really bad side effects apart from a bit of moodiness and lethargy and also weight gain due to the steroids. Tony has not felt sick and plays golf twice a week in the 2 weeks before the next infusion.Hope this helps.

regards barbara

User

Posted 12 Dec 2018 at 08:43

Hi Bazza,

Good luck with your Chemo I had six sessions last year all good so far ,on Prostap

User

Posted 12 Dec 2018 at 11:19

Lyn, youre going to have to get peed off with me. I feel too well to be poisoned at this stage. Im backing out.

User

Posted 12 Dec 2018 at 16:21

Difficult times Bazza. I know diddly about Chemo. However, I have seen how other ‘young’ men have coped with it. As a reminder look at Si (Siness) and Kev’s (Irun) profiles. Both have had Chemo and have got in with their lives afterwards

Take heart mate

Bri

User

Posted 12 Dec 2018 at 17:59

Hi Bazza, sorry you are where you are.

i have no idea what effect the chemo will have on you but what is really the alternative?

personally, I trust the docs but also do my own thing (Chinese medicine, acupuncture, vegan, extreme exercise, vit d, baby aspirin, pomi-t, magnesiumm, B12) as well.

one day I know that the benefit will not outweigh the docs treatment but to have/not have treatment will be based on facts of how I actually feel not how I think I might feel.

i can’t tell you what to do but doing nothing now does not make sense to me.

whatever you actually do I will be rooting for you.

take care

kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 12 Dec 2018 at 18:16

Fear is making you irrational. You can start chemo and if you don't like it you can stop. If you don't start, you are going to be on a downward spiral and may end up too ill to cope with chemo.

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

User

Posted 14 Dec 2018 at 17:14

Hi Bazza ,Glad I took the Chemo early Sept 2017

when I was fit , still am

Psa Today 0,04

still on Prostap

Edited by member 17 Dec 2018 at 20:45 | Reason: Not specified

User

Posted 16 Dec 2018 at 03:26

Hi Bazza,

I know nothing about chemotherapy but will have to deal with it in the future.

Everyone has to deal with decisions about treatment at some point and it must be difficult to know what to do for the best. I was only given one option with my cancer treatment at diagnosis, HT & RT, as they said it was too advanced for surgery so I didn't have to make those difficult choices that others have found to be so hard to deal with.

Five months after that, when I had my heart attack, I was faced with a major decision which I now realise I got wrong. The cardiologist wanted me to have a bypass operation, which I didn't want to have because I thought the recovery time would be too long and I needed to get back to work (as a freelance, no work, no money). As it turned out, that was a bad decision as I couldn't return to work for five and a half months anyway due to ongoing heart problems. I still have heart problems which will only probably be sorted with a bypass so I wish I'd thought about it more carefully.

I'm sure that if I could have heard the experience of other cardiac patients who had had the bypass operation, I may have decided differently. At least you have many people on this site who can share their experiences with you.

Anyway I just wanted to wish you all the very best in whatever you finally decide to do and try to have a very Happy Christmas.

Steve

User

Posted 20 Dec 2018 at 10:03

New Symptom.....

last night about 2am, i woke with a sense of fullness in my left leg and noticed it was slightly swollen compared to the right. there was no pain but a discernible size difference. im really worried whether its lymphadema or a side effect of the morphine im on. either way, what should/can i do? thanks

User

Posted 20 Dec 2018 at 16:19

Bazza, you have had lymph nodes removed so lymphoedema is to be expected. There is no cure but you can elevate your leg to help natural drainage. Extra walking will also help. I had 18 lymph nodes out over six years ago and experienced this problem immediately. It is a damned inconvenience but should not change your life. You will be much more aware of the size difference than other people. I still wear shorts in the summer and have stopped worrying about my left shoe being a much tighter fit than my right. You just need to adjust to the new "normal"!

User

Posted 24 Dec 2018 at 15:24

Wishing all brothers and sisters on this forum a wonderful and happy, healthy Christmas. For those including myself who believe that 2019 might be their last year, let’s confound the effing critics and win the day!

bazza

User

Posted 24 Dec 2018 at 15:34

A healthy, happy 2019 to you and yours too Bazza.

Let’s all keep confounding the critics!

Ian

Ido4

User

Posted 24 Dec 2018 at 15:55

No way Bazza. I plan to visit in 2020 so you better be there :-))

Happy Xmas friend

User

Posted 24 Dec 2018 at 19:23

Joyeux Noel Bazza - gros bisous xxx

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

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Bazza health update (for those long enough in the tooth to remember me!)

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