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"The road ahead"!

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User

Posted 25 Oct 2019 at 18:54

Hope this treatment works well for you and others will be able to benefit in due course even if the side effects are rough.

Barry

User

Posted 25 Oct 2019 at 18:59

Keep the faith Valleyboy,

I am not experiencing anything like what you are going through. My hope is that it is working for you through all the discomfort. You should find out more in 2 weeks time. In my case I will find out more on Tuesday.

Fingers crossed for you

All the very best

Dave

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

User

Posted 25 Oct 2019 at 22:58

Thanks for sharing this Valleyboy. Hope this treatment works for you despite the rough ride.

Ido4

User

Posted 26 Oct 2019 at 12:25

1st post treatment blood result in, and kidney liver and bone marrow functions all within acceptable levels. So whilst it’s a hard road at the moment at least my vital functions for further treatment seem to be ok. Another blood test in two weeks so we ll see where we are then.
Keep the Faith
J.

User

Posted 26 Oct 2019 at 15:58

Hi Valleyboy.

Classic dilemma, I have had treatments where I had absolutely no side effects at all. Nothing. Then later the treatment has been stopped as ineffective.

Although you are having extreme side effects, and your organs seem to be functioning OK, this may be just the treatment attacking the cancer as it is supposed to do, but quite agressively. Not sure if your treatment can be reduced slightly to minimise the effects, but worth asking the question.

Best regards

User

Posted 26 Oct 2019 at 17:32

Thanks Orm 123, let’s hope ur right, and I know ur talking sense re dosage, but as I’m self funding this treatment, I’d rather have the full dose and ride the side effects as best I can. 😜
Strange thing is I have no problems during the day, no sweats, and much less pain than I had. I’m also taking far fewer pain tablets which can only be a good thing too. However as soon as I go to bed look out!
Anyway I’ve got a big game to look forward too tmos morning. As a Wales v England final will really be a great tonic!!
Keep the Faith.
J.

User

Posted 26 Oct 2019 at 18:10

Have you got to the bottom of why your eye was swollen? Has it sorted itself out?

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

User

Posted 26 Oct 2019 at 19:30

Lyn
To be honest I think a lot of it is due to the fact that I’ve only been sleeping in approx 2-3 hour blocks for the last 16 days? Therefore the puffiness may well be a consequence of that?
However prior to my last chemo infusion in August I had some blood spots around the periphery of both eyes, with one in the centre of my left eye which did cause some blurred vision and gave a red tinge to anything directly in front of my left eye. That was all sorted out with 3 x weeks of eye drops, which also reduced the slight increase in pressure also noted in my left eye.
I now have a follow up consultation/eye test on the 17th November, which I’m hoping will shed a bit more light on the subject then?
God bless the NHS.
Keep the Faith.
J.

User

Posted 26 Oct 2019 at 19:44

Hi Valleyboy

Sounds like your dealing with the side effects as best you can, I get really hot in the night nothing compared to what your experiencing but leads to interrupted sleep anyway big game tomorrow early start for us so looking forward to an England Wales final .

keep the faith

User

Posted 26 Oct 2019 at 20:30

Horrible - hope it is resolved soon.

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

User

Posted 27 Oct 2019 at 20:12

Good luck on Tuesday.

User

Posted 22 Nov 2019 at 18:05

Ok quick update. Attended at Windsor yesterday for my 2nd Lutetium 177 injection. All done and dusted in approx 3 hours with no issues during treatment. Took normal pain tabs during day when both travelling to/from Windsor and just prior to treatment at 5pm. Then travelled home, approx 4 hours in a private taxi so again all ok re pain levels.
As with my previous treatment I had 1 x sweat last night, but on checking my diary I notice that was very similar to how it went last time as my main heavy sweats started after approx day 3 post treatment.
I queried all off my side effects with my consultant and at the moment he’s not too concerned with those, as he is hoping that it’s a sign that the treatment is working?? However he’s reserving his judgement until after my 2nd PSMA/PET/CT scan on the 20th December, when he ll have a full picture of what’s happened between October and December.
Also Spoke to quite a well informed nurse there who also answered loads of my queries on this issue, and again put my mind at rest on a lot of issues.
Anyway regular bloods to be taken every two weeks to keep and eye on my kidney, liver and red blood cell counts so it’s onwards and upwards and let’s see what happens over the next few weeks.
Keep the Faith
J.

User

Posted 22 Nov 2019 at 18:28

Good to see that things going forward nicely.

Did they check your PSA by chance?

Regards

Dave

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

User

Posted 22 Nov 2019 at 20:54

Cheers Dave
They did take a full blood sample prior to treatment yesterday but still awaiting results. However as I ve already stated in a previous post whilst only a small No for me, my PSA has reduced by approx 700 from 4 weeks ago.
Also as a result of last weeks blood transfusion my Hb levels have also increased from 82 to 99, so much nearer the average.
Keep the Faith
J.

User

Posted 22 Nov 2019 at 21:14

Good indicators - fingers crossed for you both 🤞

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

User

Posted 23 Nov 2019 at 12:10

Hi Valley Boy

Fingers crossed everything is going the right way for you thanks for your posts you are an inspiration to us all

keep the faith

User

Posted 30 Nov 2019 at 17:00

Ok. Approx 1 x week since Lutetium/177 2nd infusion in Windsor. And whilst I’m not counting my chickens as yet. My last 7 weeks of night sweats seem to have calmed down? Also daily pain levels more than acceptable, with only needing to take pain tabs on waking and before I go back to bed. No other tabs required during day. Next fortnightly blood test due next Thursday, 5th December. So hopefully that will give a further indication as to wether this treatment has finally kicked in and is hitting my PSA/ALP etc.
Then another PSMA/PET/CT scan on 20th December will allow my specialist to compare that scan with the original one I had in October, again to see if there’s any change in tumour size/bone activity etc.
Telephone consultation also being booked with my Bristol consultant for early next week, so dependant on his views then I ll update accordingly.
Keep the Faith
J.

User

Posted 30 Nov 2019 at 19:00

Hi Valley Boy

Some journey you’ve been on and showing some spirit keep it up we are all with you

keep the faith

User

Posted 30 Nov 2019 at 23:20

Well I am pretty sure it is working for you. The lack of pain is a massive clue, but it will the PSA drop and the next PSMA Scan that will be the proof

Fingers crossed for you Vallleyboy.

Keep the faith

Dave

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

User

Posted 19 Dec 2019 at 20:29

Quick update.
Off to Cheltenham for my 2nd PSMA/PET/CT scan tmos. So Had my fortnightly Lutetium blood tests today and unfortunately my PSA has gone up 190 to 1934? Whilst my ALP has gone up 52 to 233? I’ve also developed a Lutetium side effect of a numb chin and lower lip So my oncologist has recommended that I go back on Dexamethasone for another 3 weeks. So hopefully I ll pick that up from my local surgery tmos morning.
My Hb has also dropped to 76 thus I’m booked in for a blood transfusion on Monday. With a Zometa bone hardener infusion on Tuesday. So it’s a busy run up to Xmas.
I ll update further as/ when I get the results from my scans.
Merry Xmas to all. Keep the Faith.
J.

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