"The road ahead"!

User

Posted 12 Aug 2019 at 17:25

Traditional quality British sausages are classed as lean meat rather than the processed continental and American kinds - check the ingredients if in doubt

Edited by member 12 Aug 2019 at 17:26 | Reason: Not specified

User

Posted 13 Aug 2019 at 09:31

Hope the treatment goes well and you stay well it was interesting to read the info about the nutrition it may well come in useful. After meeting with the Onco yesterday I’m staying on the Abiraterone for now and a CT scan is planned on the result of that will decide the way forward.

keep the faith

User

Posted 29 Aug 2019 at 20:30

Had bloods today for chemo on Monday, but as my Hb was down to 68 and I’m pretty breathless if I exert myself, then I’m having a transfusion tomorrow with further chemo postponed until my bloods get back to near normal. PSA up 300 to 1807. Whilst my ALP, which is a better marker for my bone related issues, is down another 102 to 242, so something is going in the right direction.

However, it never rains but pours in that for about a week I’ve had blurred vision in my left eye. So I went to the opticians on Tuesday, they did a comprehensive eye health check which indicated 4 areas of blood build up in the back of my left eye, including one in the centre which is the one that, when I look at someone’s face I see it through a red mist? There was also 1 area of concern on the edge of my right eye. They immediately referred me to the ophthalmic Dept. At my local hospital and at 4-30 on Tuesday I had a phone call asking me to attend at the hospital midday on weds. Yet again fantastic service from the NHS!!

Anyway I duly attended and was subject to another barrage of eye tests, which confirmed the opticians findings, however they did add that the cause of the problem could well be my chemo and tablet regime? So they’ve put me on eye drops twice a day till the 18/09, when everything will be reviewed again.

I mentioned this to my oncologist today who agreed that it could well be down to the chemo, (17 infusions so far), So she has postponed my next infusion due on Monday until after the 18th. Sept.

Anyway as usual I ll keep you updated as/when applicable.

Keep the Faith

User

Posted 29 Aug 2019 at 20:53

Hi Valley Boy

As you say fantastic service from the NHS they do pull out all the stops when needed the eye problem is a bloody nuisance I hope they can sort that for you.

Keep the Faith

User

Posted 29 Aug 2019 at 21:01

Great to see your positivity shining through Valleyboy.

Keep going

Regards

Dave

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

User

Posted 31 Aug 2019 at 23:16

Sorry to hear this Valley Boy, I didn’t know this could happen and am glad that the NHS is doing the right things. Fingers crossed.

lobe Devonmaid xxx

User

Posted 12 Sep 2019 at 11:53

Ok. As mentioned previously, due to one thing or another my chemo infusions have been put on hold at the moment. However when one door closes......tmos I’m off to Cheltenham to have a privately funded PET/CT scan and full bloods tests. These will then be assessed by my new oncology Professor in Bristol, and if I’ve got the right bone receptors etc. I ll be going forward for Lutetium 177 treatment in Windsor.

Obviously I won’t know anything definite for about a week so I ll update you all as appropriate.

Keep the Faith

User

Posted 12 Sep 2019 at 12:14

Fingers crossed valleyboy

User

Posted 12 Sep 2019 at 16:03

Good luck friend

User

Posted 12 Sep 2019 at 16:34

Good luck Valley Boy I’ve been looking at this myself today funnily enough.

Best wishes

User

Posted 12 Sep 2019 at 18:11

Finger crossed for you that you have the PSMA receptors. It may be worth asking about Actinium 225 if there is bone involvement or a mixture of both. Keep us informed.

All the best

Roy

User

Posted 12 Sep 2019 at 22:27

Fingers crossed for you Valleyboy.

I have been given the ok now for Lutetium 177 as my PSMA Pet scans light me up like a Christmas tree and my bloods are good, particularly in regards to kidney function

Just waiting for a start date now.

Who knows, our paths may cross.

Regards

Dave

Edited by member 12 Sep 2019 at 22:29 | Reason: Spelling error

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

User

Posted 03 Oct 2019 at 07:16

In the immortal words of Victor Meldrew-“I cant believe it”!! So, I had my PET-CT scan/ bloods on/around 16th, Sept, and all ok for Lutetium treatment. (Due to start 09/10/19.), However following another routine blood test on the 29/09 prior to my monthly Zometa infusion last Monday, my kidney function, via my creatinine level has risen outside of the normal range for the first time in over a year? Creatiine level now 151? So obviously when I spoke to the specialist in Windsor yesterday he wants to put the treatment on hold till I get this kidney problem sorted. So last Monday following a discussion with my local oncologist, (as this problem seem to have manifested itself over the past two weeks). it was decided that I should have a specialist kidney CT scan today, ( Thursday 3/10/19), followed by another blood test on Friday, the results of which will be assessed both locally and in Windsor on Monday.

These results will then determine wether treatment will be delayed or not, because as explained, Lutetium does put extra pressure on your bone marrow and kidney functions, so both need to be in good shape before starting. My only concern now is that as I had a regular anemia blood transfusion session yesterday, how much, if any, will that effect today’s scan and bloods tmos?

Anyway, I ll keep you all informed of progress as/when applicable.

Keep the Faith

User

Posted 03 Oct 2019 at 09:49

Eating meat, and taking serious exercise push up your creatinine levels. I avoid doing both before a kidney function blood test. I saw an NHS recommendation somewhere to not eat more than 100g of meat in the 24h before a kidney function test.

User

Posted 03 Oct 2019 at 10:43

Hi J, are you taking regular ibuprofen for anything? That can push up the creatinine as well

User

Posted 03 Oct 2019 at 17:04

Hi Valley Boy another knock back it’s a nuisance I’m positive you will get over this and press on with the treatment.

Keep the faith

User

Posted 03 Oct 2019 at 17:29

Well boys (and girls). Just had urgent follow up bloods and my creatine levels have dropped back from 151 to 91 ( normal range 58-110). So back well within the normal range. Last few reading have been 87 on 16/09/19. 151 on 26/09/19. And 91 today, 3/10/19? So as I said before thanks for the responses to my last post, but as discussed with my oncologist today “ was it a blip”? as whilst he’s happy, he has no real idea as to what caused the spike?

Thanks “The Bear”

Thanks D. W. But I no longer take ibuprofen, but I do take Naproxen which also may have some effect on creatine levels so I’m having a chat with my specialist pain nurse next week?

Andy62. Thanks but again no red meat, or strenuous exercise pre last blood test. In fact due to the managed pains in my hips I haven’t even managed a game of golf since March. Which was, and hopefully will be my main form exercise on completion of the Lutetium treatment. ?

Just sent an e mail to Genesis Care in Windsor, outlining same, and asking them as to wether I can now attend for the pre planned treatment next Wednesday?

So hopefully onwards and upwards, and as usual, when I know anything you ll know shortly after??😜

Keep the Faith

User

Posted 03 Oct 2019 at 20:19

Hi Valley Boy

Good news your moving forward again

Best of luck

Keep the faith

User

Posted 05 Oct 2019 at 08:22

Good luck Valleyboy.

I have already started my Lutetium 177 treatment.

I am now 10 days on from my first infusion and all is good so far.

All best wishes to you

Regards

Dave

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

User

Posted 09 Oct 2019 at 14:11

All. Just a quick update. Well I’m finally off to Windsor for Lutetium 177 treatment tmos. (Thursday 10/10). Car picking me up at 11am, then we ll take it from there. Not feeling particularly good over the past few days as I’ve had some pains in my chest and shoulders. However I’m still looking forward to the treatment as I do feel that’s its now or never for me, and hopefully this treatment will give me the overall health pick up I need at this moment in time.

Obviously I’ve spoken with the consultants in Windsor who have explained that whilst Lutetium has had some spectacular results, it also doesn’t work for everybody, so let’s just hope I’m one of the lucky ones?

Anyway, all being well I ll update you all on Friday.

Keep the Faith

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