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User
Posted 27 May 2023 at 23:58

Leila, thank you for the information, can I have the apple cider vinegar on my chips 😃,only joking.


Thanks Chris 

User
Posted 28 May 2023 at 00:04
Re borderline diabetic, you need to read up on the low carb diet and it's clinically proven ability to cure type 2 diabetes.

Low blood sugar is a good thing!
User
Posted 28 May 2023 at 15:30

Haha, of course you can, along with a bit of decent black pepper and sea salt. Served in newspaper. 


Enjoy 😉

User
Posted 28 May 2023 at 22:13
You can ask for your breast buds to be zapped with radiatiation before you start the tablets. It’s a two minute procedure. If it’s a no on the NHS it may be worth asking for a private quote as I have read it distresses many guys to grow moobs though some don’t mind. I can see why you’d want to prevent this but seems if you don’t ask you don’t get.
User
Posted 28 May 2023 at 22:13
You can ask for your breast buds to be zapped with radiatiation before you start the tablets. It’s a two minute procedure. If it’s a no on the NHS it may be worth asking for a private quote as I have read it distresses many guys to grow moobs though some don’t mind. I can see why you’d want to prevent this but seems if you don’t ask you don’t get.
User
Posted 28 May 2023 at 22:13

Originally Posted by: Online Community Member
Re borderline diabetic, you need to read up on the low carb diet and it's clinically proven ability to cure type 2 diabetes.

Low blood sugar is a good thing!


I have just looked up the foods to eat and avoid, pity these are not the other way round.


I can feel when my blood sugar is dropping, I used a finger prick monitor when I felt the sugar dropping and got a reading just below 3. Thanks again for the information.


Thanks Chris

User
Posted 13 Jun 2023 at 19:47

Prior to my latest SABR treatment I persuaded my GP to allow me a pre treatment PSA test. PSA is up from 4.8 to 6.2 in ten weeks, but the rate of rise is slightly down.I finished my fifth SABR treatment yesterday.


A boring review of my SABR treatment more for my records. Planning scan with contrast, all went well in and out within half an hour.My treatment is to the precaval lymph node so the bowel empty/ full, bladder empty/full does not apply.


First SABR treatment on the table , they use the skin scanning to position me. A quick scan followed by the treatment,no issues.


Second SABR treatment, the first scan showed the bowel slightly in the target area, so off the table and a walk round, back on the table bowel still to close, abandoned the treatment and come back Monday. 


So still second treatment on the Monday. First scan, bowel too close ,off the table peppermint tea and a walk round, back on the table and another scan ,off the table and another walk round, third scan okay, treatment done.


Third treatment, after not eating for four hours,on the table first scan no good, off the table and walk round, back on the table and two scans still no go, just about to go back on the table and one of the radiology staff are taken ill. Third time on the table and after three scans and some input and adjustments from the physicist who had been asked to attend , I finally got the treatment. Three hours after arriving I left for home.


Fourth treatment, nothing to eat for six and a half hours, on the table, two scans and off the table for another walk round. Back on the table three scans a bit of adjustment treatment delivered.


On Sunday while in the garden I tried to step up onto a raised flower bed and I pulled something in my left knee, because my choice of painkillers gives me constipation I didn't risk taking anything before my next SABR treatment.


Fifth treatment again nothing to eat for six and a half hours fortunately only one visit to the table. It took two scans and a bit of adjustment before the treatment finally went ahead.


I think the initial upset stomach caused by the bicalutamide has settled down, aches to joints seem worse. I see the oncologist on Monday for a post treatment review. Then another waiting game before we know the outcome


.


 


Thanks Chris 

User
Posted 14 Jun 2023 at 00:03
Fingers crossed it's err 10th? time lucky! I guess the bical will make any future PSA results invalid until you come off it??
User
Posted 14 Jun 2023 at 15:20

Wishing you lots of success for the treatment Chris and really hope your knee gets better soon.


How long are you planning to be on hormone treatment? 

User
Posted 14 Jun 2023 at 15:31

Elaine, thanks, the plan is just to have the bicalutamide for six months. I did keep changing my mind about having it so I will have to see how it goes.


Tanks Chris 

Edited by member 14 Jun 2023 at 15:37  | Reason: Not specified

User
Posted 14 Jun 2023 at 15:46

That’s good then, atleast you know you can come off it and see what the situation is if you were really unhappy on it.


Rob had prostap for 6 months, and he was ok on it really. I think because he started it straight away after diagnosis the whole thing was just very overwhelming and we felt more negative towards the HT. Of course it’s looking like he may be back on it again soon so feel we have to go into it with a more positive attitude 🤞🏼 I do keep telling myself that I’m just glad there are options.


Best of luck Chris x

User
Posted 14 Jun 2023 at 16:25
Chris you’ve been a rock to me over the years. If it’s getting to the stage you need HT then you know I always put QOL first. I had no choice in the end , but for you I’m hoping treatment works. But if I’ve coped this last 2 1/2 yrs then I know you’re the sort of guy that can cope too. Just sending you support is all 👍
User
Posted 14 Jun 2023 at 17:33

Hi Chris, this all sounds tricky but hopefully it will give a good result. Wishing you all the best with your SABR treatment. 

Ido4

User
Posted 14 Jun 2023 at 19:28

Thanks for the replies guys and gals, has anyone on bicalutamide found their flaccid penis is bigger than normal.


Thanks Chris 

User
Posted 14 Jun 2023 at 19:30

Thanks ColwickChris,


That treatment regime seems emotionally exhausting.  I don't know how you're able to write about it so matter-of-factly.  Big respect.


JedSee.

User
Posted 14 Jun 2023 at 20:11

Jedsee ,I hope you never have to see the radiotherapy staff ,but if it happens you will find they are the most wonderful people you could hope to meet, they made it so simple. 


Thanks Chris 

User
Posted 14 Jun 2023 at 20:27

Colwickchris,


I am humbled by the fact that, in the middle of all your trials and tribulations, you've taken the time to reach out to me (and others).


I wish you a very successful outcome from your treatment.


Best wishes always.


JedSee.

User
Posted 17 Aug 2023 at 18:11

Hi Guys, 10 weeks on from SABR treatment to a single lymph node and 10 weeks on bicalutamide. PSA down from 6.2 10 weeks ago to 0.32.


Presumably the bicalutamide is having the greatest effect. Saw the oncologist today ,next test and meeting in January.


Thanks Chris 

User
Posted 17 Aug 2023 at 19:19

That's fantastic, Chris.  Well done.  So, now you can look forward to a quiet Autumn and a Bright New Year.


Best wishes,


JedSee.

User
Posted 17 Aug 2023 at 19:43

That's great news Chris. The Bical is not a bundle of laughs but at least you are already nearing the halfway mark. Hope you have managed to avoid breast budding. Mine kicked in around the 10 week mark. Chris

User
Posted 17 Aug 2023 at 19:52

Great news Chris, I’m really pleased for you.


Dere

User
Posted 17 Aug 2023 at 20:45

Originally Posted by: Online Community Member


That's great news Chris. The Bical is not a bundle of laughs but at least you are already nearing the halfway mark. Hope you have managed to avoid breast budding. Mine kicked in around the 10 week mark. Chris



Chris


Could you please describe breast budding, I noticed the other day one nipple slightly hurt when I caught it and I could feel a small lump. The onco said he couldn't feel anything. I assumed when guys say the have sore nipples it was similar to when a wet polo shirt rubs on the nipples.


Thanks Chris 


 


 

User
Posted 17 Aug 2023 at 20:47

Fantastic Chris. Genuinely chuffed to read this my man.


 


Jamie.

User
Posted 17 Aug 2023 at 21:17
Lovely news for us all Chris
User
Posted 17 Aug 2023 at 22:26
Great news,Chris. I'm really happy to hear that. I've been wondering how you were doing. I appreciate your update.
User
Posted 18 Aug 2023 at 22:04

Chris, the first time I noticed this phenomena was when I brushed a nipple when passing through a door and it hurt (it was a big enough doorway, I was just clumsy). On examination I could see both nipples were slightly raised and I could feel a hard area just behind it. My nipples gradually became more raised and tender but by this time I had managed to get a prescription for Tamoxifen to keep it in check. If you look up gynaecomastia you can get a bit more information on it. I imagine you have a much better idea how your nipples should feel than your Onco. I'm now nearly six months post Bical and my breasts are just about back to normal. The tenderness went away after a month or so but the hard lump under the nipple has been slow to dissipate. As for the wet polo shirt I don't think I've ever experience that 😀 

User
Posted 19 Aug 2023 at 23:41
Great news Chris, really happy for you. Long may it continue x
User
Posted 15 Nov 2023 at 00:17

Just took the last of my 150 mg bicalutamide tablets. I have been on them for six months. The nipples are still tender and lumpy and fortunately the man boobs are are quite small. The sexual desire is still there perhaps a little reduced. Hopefully these minor symptoms will diminish over the coming weeks. 


Appointment and next PSA test in 10 weeks.  Still here, still moaning and far better off than many in the world.


Thanks Chris 


 

Edited by member 15 Nov 2023 at 00:18  | Reason: Spelling

User
Posted 15 Nov 2023 at 00:43

That's great, Chris. 


Happy to hear that💪🏼👍🏼

User
Posted 15 Nov 2023 at 01:11
Yay!!!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Nov 2023 at 07:26
👍Good luck in 10 weeks time

Cheers
BILL
User
Posted 15 Nov 2023 at 07:43

Great attitude Chris, onwards and downwards!


Derek

User
Posted 15 Nov 2023 at 07:49
Good news Chris. Moan away mate. Just enjoy Xmas now ok 👍
User
Posted 15 Nov 2023 at 13:01

Great that you are off the Bical Chris. It does have a bit of a long half life, so it hangs around in your system for a while. My nipples took about 2-3 months to completely lose their tenderness and about another two months to lose their hardness. Fingers crossed for the next PSA 

User
Posted 15 Nov 2023 at 21:08

💪😎


Best wishes, Chris.


 


JedSee.

User
Posted 11 Dec 2023 at 17:37

Ten years ago today I had my one and only TRUS biopsy. I have had lots of treatment,still not out if the woods,but still here.


I happened to look at my last PSMA scan today and noticed that it says,  "No abnormal PSMA uptake within the prostatectomy bed."


Presumably the "very educated guess" of SRT to the prostate bed was correct, pity the cancer had already gone elsewhere.


Thanks Chris 

User
Posted 13 Dec 2023 at 20:07
They told me the same Chris after my PSMA scan. Also saw another post recently who also said nothing in the Prostate bed. So just shows after a seemingly successful RP and RT that something was floating about elsewhere.
High risk men should have a PSMA scan as part of their initial diagnosis

Hope all good otherwise. I’ m still waiting for the results of my MRI scan

Bri
User
Posted 13 Dec 2023 at 23:35

In response to Bri. I didn't want any scans that might have endangered me having curative treatment. The bone scan was the most worrying.


I guess if you're undetectable post op a psma scan at diagnosis wouldn't have helped.  So it would be only cases where psa was 0.5 after the op to where an MRI would detect it that might benefit, or be put straight onto hormones.

User
Posted 14 Dec 2023 at 01:33

Peter, I was told 7 years ago if they found anything with a PSMA scan salvage RT would not happen and it would be straight onto HT. I think for some of us we have moved on from that and a limited number of areas outside the prostate bed would be treated at the same time as SRT. That may not be the case with bone spread. Three years ago I was waiting for my PSA to reach 2,4, 6 or even 10 before going onto HT, again attitudes changed and I have had two lymph node tumors treated.


Probably another post code lottery.


Thanks Chris 

User
Posted 23 Jan 2024 at 10:23

Now eight months from SABR treatment to my second lymph node and ten weeks since completion on bicalutamide. I had my PSA yesterday which is now 0.44, so down from 6.3 before SABR but up from 0.32 while on bicalutamide. I don't think there are many people on the same treatment path so hard to understand what it means.


See the onco in a couple of days.


Yet again my GP practice reports it as normal,no further action required.


Thanks Chris 

User
Posted 23 Jan 2024 at 11:15

Clearly not the news you were hoping for Chris. Let's hope the SABR is still doing it's work on the treated node and that PSA will drop. You don't want to end up having to play wak a mole. Fingers crossed.

User
Posted 23 Jan 2024 at 11:51
May just be a small bounce Chris since coming off the Bicalutamide and hopefully will stay steady.
User
Posted 23 Jan 2024 at 14:47
I don't think the value on Bical is relevant, the PSA test in 3 months is the one to watch. Fingers crossed for that one!
User
Posted 23 Jan 2024 at 19:40

Here's to no further action required CC.


Hope and warmth.


Jamie.

User
Posted 23 Jan 2024 at 20:53
The RT may still be working Chris. Be good to hear what Jamie has to say about it. But fingers crossed all is good
I am still waiting for clarification about that lymph node 😡
Take care
Bri
User
Posted 23 Jan 2024 at 23:55

No one ever likes to see a rise Chris but hopefully it’s just like some of the other guys have said and just a bounce that will settle. Best of luck for your next test x

User
Posted 26 Jan 2024 at 12:59

Hi, so saw the onco yesterday, he said it would have been better if the PSA was 0.1 but 0.44 was better than it being 1.


He said he has never seen cancer remain in lymph node that has been treated with SABR. He says bicalutamide is out of the system within 2/3 weeks, unlike injections that take longer to disappear.


He expects we will need further PSMA scans but wants to wait four months before the next PSA test and the scan would depend on velocity rather the level.


If it wasn't for the suprapubic catheter life would be almost normal.


Thank you all for your support.


Thanks Chris 

User
Posted 12 Feb 2024 at 11:19
I'm so glad to read that, Chris. I hope you'll soon can get out of that rollercoaster you've been on lately
Best wishes!
Lola.
User
Posted 12 Feb 2024 at 13:37

The post between my 26th Jan post and the one from Lola is probably not safe. I will report it as soon as I complete this post.


Thanks Chris 


Added,The moderators have now removed the post I reported, someone had copied a post of mine and added some dubious looking hyperlinks. 


Thanks Chris 

Edited by member 12 Feb 2024 at 17:14  | Reason: Not specified

User
Posted 12 Feb 2024 at 13:51
What's wrong with my post of with me? I was just showing my happiness for your good news?
Have I said anything improper? I
I'm confused.
 
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