"The road ahead"!

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
J.

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
J.

User

Posted 03 Oct 2019 at 20:19

Hi Valley Boy
Good news your moving forward again
Best of luck
Keep the faith
R

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
J.

User

Posted 09 Oct 2019 at 14:33

Good Luck, I hope it all goes well for you.

User

Posted 09 Oct 2019 at 14:35

Sending my best wishes.

User

Posted 09 Oct 2019 at 15:58

All the best Valleyboy. Hope the treatment works in your case.

Ido4

User

Posted 09 Oct 2019 at 16:05

All the best, hope it is a success.

Thanks Chris

User

Posted 09 Oct 2019 at 18:04

Hi Valley Boy

Good news your on your way at last the very best wishes from another valley boy fingers crossed all will be well with you

Keep the Faith

User

Posted 09 Oct 2019 at 18:15

All the best Valley boy, here's hoping it goes well.

Sandy

User

Posted 11 Oct 2019 at 08:07

Well it’s the morning after the night before!!
Had my Lutetium treatment in Windsor yesterday, and so far no issues.
3 hours to Windsor in private hire car. Approx 4 hours in treatment room, (Inc. lunch), 3 hours back. So long but relaxing day.
Constipation also cleared this morning which is another bonus.
Don’t know if it psychological but on waking I currently have no pain at all? No chest, leg, hip, or rib pain which has been bugging me for over a week.
Just had my morning tabs with the addition of 4 times deximethazone, which I new take at 4 per day for 3 days, the 3 per day for 4 days.
Also supplied with some antibiotics to take if I develop any water infection.
So at the moment it’s onwards and upwards? With full bloods required in 2 and 4 weeks time to check if I’m still eligible for infusion 2 in approx 6 weeks time.
Anyway just off for a jog and a game of golf, neither of which I’ve been able to do since March??(only joking)!! Gonna take it easy and see how things develop.
Thanks for all the good wishes and I ll update as/when applicable.
Keep the Faith
J.

User

Posted 11 Oct 2019 at 09:27

Good to hear your news Valleyboy.

Interesting that you are taking Dexamethasone. They have not prescribed anything in my case

Your lack of pain also mirrors my experience

Delighted to see you are back on the golf course.

Regards

Dave

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

User

Posted 11 Oct 2019 at 12:58

Good to hear you have finally started the treatment and that the pain you were having has deminished. I contacted Bristol today to see if they are still recruiting, but they have now filled all available places so that's no longer an option for me. Fingers crossed for you that it gives the cancer a good kicking.

All the best

Roy

User

Posted 11 Oct 2019 at 19:17

Hi Valley Boy

A very busy day but you are through the first hurdle and a six week break till the next keep on going J

Very best wishes and keep the faith

User

Posted 14 Oct 2019 at 11:04

Ok. Quick update day 5 after 1st Lutetium 177 infusion.
After first day when everything seemed to calm down there’s been a bit of a change—since then Heavy cold sweats at least 4 times a night, necessitating complete change of bed and sleeping clothes. Also bit of a dry mouth but nothing that can’t be controlled by a drink or a boiled sweet.
Some pain in lower back area, but then again as my regime at the moment is mainly bed, sit down in chair, bed, that’s hardly surprising. Hoping to get back to a bit more exercise next week but very lethargic at mo.
Still staying at least a metre away from missus and dog as advised for 7 days. Then at least able to sit in same room for limited time during week two. Weeks 3-6 should be back to normal but we ll just wait and see.
Full Bloods to be taken after 2 then 4 weeks to check on kidney plus bone marrow impact to see if ok to go back for infusion 2 in about 6 weeks. But still awaiting full details of same from Windsor.
All in all whilst I’ve got something to do, eg watching rugby and footie all over weekend, it’s not to bad, and whilst I will no doubt watch a bit a day-time tv later, I hoping to get stuck into my new Sam Warburton book today for a bit of escapism?,
So unless anything untoward crops ups I ll update you all again as applicable.
Keep the Faith
J.

User

Posted 14 Oct 2019 at 18:59

You are going through the mill again stick with it let’s all hope you make good progress hey Wales are through to the quarter finals something to look forward to on the weekend.

keep the faith

very best wishes

User

Posted 14 Oct 2019 at 20:06

Valleyboy,

1st 2 weeks are the worst when the radioactive substance in your body is doing what it says on the tin.

Week 3 should be fine if my experience is anything to go by.

Regards

Dave

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

User

Posted 14 Oct 2019 at 20:28

I hope it all settles down soon, VB

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

User

Posted 14 Oct 2019 at 21:07

Hoping things improve ValleyBoy, keep on posting and living your life xx

User

Posted 25 Oct 2019 at 11:08

Ok. Day 15 post 1st Lutetium 177 treatment, and what a “horse” this is to ride!
Still having cold sweats nightly, necessitating 5 x changes last night?
Also this morning my left eye is well swollen so need to check that out.
Cold sweats mean that my back aches on waking from lying in damp sheets whilst sleeping!
No problems with appitite and drinking plenty of water so hopefully kidney function ok when I get my 1st post treatment blood results today.
However, PSA spiked 200 to 2228, but ALP down over 100 to 188. But I was told that this might happen and that blood test 2 in two weeks time should be more indicative of where we re going with this treatment.
Anyway, I ll sign off for now and update as when I’ve got more info to share.
Keep the Faith
J.

User

Posted 25 Oct 2019 at 11:58

Thanks for the updates

Are the sweats like those associated with anti hormone therapy or "something else" that is associated with the treatment??

User

Posted 25 Oct 2019 at 14:55

Not sure. But they are just like the ones I used to have when I started on hormone treatment, 1st Degaralix then Prostap/3 some 2 1/2 years ago!
Ps
They are a noted side effect of Lu177 treatment. So just gotta go with the flow.
Keep the Faith
J.

User

Posted 25 Oct 2019 at 18:14

As you say your having a rough ride valley boy hope all this settled down for you soon

keep the faith

best wishes

User

Posted 25 Oct 2019 at 19:18

Seems lifting you up in prayer is in order. Will do so and again appreciate you sharing your journey.

SP, Minnesota, US

User

Posted 25 Oct 2019 at 19:54

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 19:59

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 23:58

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

Ido4

User

Posted 26 Oct 2019 at 13:25

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 16:58

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 18:32

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 19:10

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 20:30

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 20:44

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 21:30

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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