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Starting HT this week.

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User
Posted 05 Nov 2024 at 15:17

I thought I would transfer my conversation to this topic as it seems more appropriate.

Here is a link to my earlier history, with typo!

https://community.prostatecanceruk.org/posts/t30912-Reaccurance-and-uncertain

Received my review letter yesterday and this afternoon I got a call from GP surgery pharmacist saying they were ordering the Bicalutamide and should be ready for Thursday. To book an appointment for the following week for the first Prostap.

I have read numerous posts and they are encouraging and I plan to be a constant visitor to the forum.

One point that came up for the hot flushes was:

Have cold drinks and avoid caffeine and alcohol. 

Does that mean tea and coffee are now no longer on the list of drinks? If that is so then that's okay. Just like to know what people's experiences are.

Many thanks

 

User
Posted 05 Nov 2024 at 18:39

Hi Hankjam,

Im so sorry that you find yourself back here after a recurrence…bloody disease, you just think your life is getting back on track and then this. And you have other issues to deal with as well, yes life can be so cruel.

With regards to your question, I have cut out as much caffeine as I can. I always drink decaf tea, I don’t like normal tea in fact. But coffee on the other hand…I Love a Costa flat white, probably because it has a triple shot and lots of caffeine. I find that decaf is very variable, some, like Costa just has no flavour…it’s like drinking hot milk. Currently I’m in a caffeine free spell for both tea and coffee to see if it helps with my sleep. I’m not convinced though it makes any difference to my flushes. Now that I have finished HT they are slowly getting better but not gone completely. It’s the ones at night just as I go to bed that are the most annoying. My flushes are accompanied by palpitations and by heart rate goes up. the when it’s over courtesy of my bedside fan ai can’t get to sleep!

Im not sure alcohol makes that’s much difference either. I’ve just come back from 5 weeks in Fuerteventura and consumed quite a few mojitos but didn’t really notice them any worse, even in the heat. It’s temperature change that brings mine on, hot OR cold. Probably a good idea to cut back on the alcohol to keep the weight down, yet another side effect of HT.

I also think you need some pleasure in life when going through this as it was pretty miserable for me…hopefully you will be one of the lucky ones and not really suffer from side effects🤞🤞🤞

Good luck…have as much fun as you can and keep smiling…it makes a difference!

Derek

 

User
Posted 05 Nov 2024 at 18:55
I was on Zoladex for 3 years (+abiraterone, enzalutimide, prednisolone on trial). Got mant of the effects, hot flushes included day&night. I'm afraid I didnt cut out any coffee this included an espresso morning&afternoon tho I dont drink alchohol. Whether the hot flushes would have been any easier I havent a clue but they werent going to last forever and the coffee didnt affect actual treatment otherwise I would have stopped or cut down. I did have acupuncture for, mainly, the hot flushes and that made a big difference for me.

Peter

User
Posted 05 Nov 2024 at 19:34
Prostap for 12 months then Degarelix had 7 another 5 to go ,hot flushes with both , loss of body hair but regrown some on my bald head , fatigue and muscle loss but all managable.

I am a coffee snob and usually have three strong fresh ground shots a day , a beer and maybe a whiskey each evening , around 11pm ,bed at 0:30 but sleep not great anyway .

Retired so try not to stree about sleep .

Try not to overthink any side effects and enjoy life .

User
Posted 05 Nov 2024 at 21:35
Splash out on any sort of umbrella you fancy.

I was told I had suffered my first stroke recently (a eye stroke no lasting damage I hope ) which reinforces my view if can afford something do it and enjoy life .

User
Posted 05 Nov 2024 at 21:59

Funnily enough I have certainly loosened the purse string since I was diagnosed. I love spending money, my wife is always getting on at me. Chris Hoy made a very apt statement tonight on his interview BBC. He said if there’s something you maybe were planning for the future, why not do it now? That guy is a Legend!

I suffered dreadful anxiety when I started HT and the GP put me on Sertraline which was a lifesaver for me. One of the side effects apparently is that it makes you want to spend money🤣🤣🤣

Enjoy your life, do things that make you happy…it really does help to get you through this ordeal.

 

User
Posted 09 Nov 2024 at 15:46

Hello Kazzy60

Thank you so much for posting.

Yes it has been very helpful. I managed to win against the GP - Pharmacy complex going backwards and forwards. Fortunately they are in the same building. GP didn't release the prescription, which happens quite often. It still needed to be signed off. Once tablets and Prostap were secure I then needed to make an appointment of the Prostap, which is now a week this Tuesday. Getting there.

I have always been a bit fearful of injections, started at an early age as I was brought up in Iran so we were for ever having inoculations against this and that, so I was happy to read that it was just a week. I had my shingles not long ago and it was really something else compared to the Flu and Covid. You touched on mood swings and this is something I am worried about. Can be a bit blue at times, tends to not last too long.

I plan to stop coffee and alcohol for the start, it's more routine than real enjoyment he said to himself, and see how it goes. My sense of taste at the moment isn't great. My sleep is variable at best, waking most mornings before 04:00 and find it difficult to get back to sleep.

I have an appointment to see what can be done with a pretty large hernia on Tuesday, which is the day I will be starting the bicalutamide. It's all go!

Kazzy I wish you and your husband well and will look out for your posts.

Thank you.

Andrew j

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User
Posted 05 Nov 2024 at 18:39

Hi Hankjam,

Im so sorry that you find yourself back here after a recurrence…bloody disease, you just think your life is getting back on track and then this. And you have other issues to deal with as well, yes life can be so cruel.

With regards to your question, I have cut out as much caffeine as I can. I always drink decaf tea, I don’t like normal tea in fact. But coffee on the other hand…I Love a Costa flat white, probably because it has a triple shot and lots of caffeine. I find that decaf is very variable, some, like Costa just has no flavour…it’s like drinking hot milk. Currently I’m in a caffeine free spell for both tea and coffee to see if it helps with my sleep. I’m not convinced though it makes any difference to my flushes. Now that I have finished HT they are slowly getting better but not gone completely. It’s the ones at night just as I go to bed that are the most annoying. My flushes are accompanied by palpitations and by heart rate goes up. the when it’s over courtesy of my bedside fan ai can’t get to sleep!

Im not sure alcohol makes that’s much difference either. I’ve just come back from 5 weeks in Fuerteventura and consumed quite a few mojitos but didn’t really notice them any worse, even in the heat. It’s temperature change that brings mine on, hot OR cold. Probably a good idea to cut back on the alcohol to keep the weight down, yet another side effect of HT.

I also think you need some pleasure in life when going through this as it was pretty miserable for me…hopefully you will be one of the lucky ones and not really suffer from side effects🤞🤞🤞

Good luck…have as much fun as you can and keep smiling…it makes a difference!

Derek

 

User
Posted 05 Nov 2024 at 18:55
I was on Zoladex for 3 years (+abiraterone, enzalutimide, prednisolone on trial). Got mant of the effects, hot flushes included day&night. I'm afraid I didnt cut out any coffee this included an espresso morning&afternoon tho I dont drink alchohol. Whether the hot flushes would have been any easier I havent a clue but they werent going to last forever and the coffee didnt affect actual treatment otherwise I would have stopped or cut down. I did have acupuncture for, mainly, the hot flushes and that made a big difference for me.

Peter

User
Posted 05 Nov 2024 at 19:34
Prostap for 12 months then Degarelix had 7 another 5 to go ,hot flushes with both , loss of body hair but regrown some on my bald head , fatigue and muscle loss but all managable.

I am a coffee snob and usually have three strong fresh ground shots a day , a beer and maybe a whiskey each evening , around 11pm ,bed at 0:30 but sleep not great anyway .

Retired so try not to stree about sleep .

Try not to overthink any side effects and enjoy life .

User
Posted 05 Nov 2024 at 20:18

Thank you Decho, Peterco and mike1862, I am sure there is a way of referencing folk, still getting the hang of the platform.

The tea and coffee are more routine, tea at 07:00 and 17:00 and coffee 30 g beans at 11:00, my life is very routine. Tea take it or leave. Coffee, when it's good it's lovely, it isn't always and I have no idea.

Decho's comment on palpitations is of interest to me. My heart is often irregular, had some really uncomfortable arrhythmias mainly at night. My sleep at the moment isn't great, waking 04:00 and listening to the radio with headphones.

I have always been one for saving for a rainy day... might loosen the strings a bit.

I wish you good.

Thank you.

 

User
Posted 05 Nov 2024 at 21:35
Splash out on any sort of umbrella you fancy.

I was told I had suffered my first stroke recently (a eye stroke no lasting damage I hope ) which reinforces my view if can afford something do it and enjoy life .

User
Posted 05 Nov 2024 at 21:59

Funnily enough I have certainly loosened the purse string since I was diagnosed. I love spending money, my wife is always getting on at me. Chris Hoy made a very apt statement tonight on his interview BBC. He said if there’s something you maybe were planning for the future, why not do it now? That guy is a Legend!

I suffered dreadful anxiety when I started HT and the GP put me on Sertraline which was a lifesaver for me. One of the side effects apparently is that it makes you want to spend money🤣🤣🤣

Enjoy your life, do things that make you happy…it really does help to get you through this ordeal.

 

User
Posted 06 Nov 2024 at 21:29

Thinking about a new smart phone in case I want to monitor my blood glucose with one of these new systems. My current one does not have the capability.

A new lens for camera to take close up bird photographs, questions as there are so many and know very little. Research needed.

Not been on holiday since 2018. In that one week I got a call from site manager to say the business was being moved to France in 2019, when I got the PCa diagnosis...

Probably enough to be going on with though there are house upgrades required.

 

User
Posted 07 Nov 2024 at 17:22

Disappointing.

Got a call on Tuesday from Surgery telling me to go to Pharmacy on Thursday to pick up the bicalutamide and book an appointment seven days later for the Prostap.

Pharmacy this afternoon. Not got the script from GP.

GP surgery closed for training. So even if I got the prescription I wouldn't have been able to book the appointment.

Looking like next week for the kick off.

Andrew j

 

User
Posted 08 Nov 2024 at 09:16

That’s so frustrating for you, Andrew. My husband had a similar start to his HT due to mixups at the GP’s and pharmacists, then bank holidays.  It really messed with our heads at the time as we wanted to feel like the fight back against the cancer was under way!

 Anyway he had his first his Prostap injection on 8th October,  finished the Bicalutamide last week and started Abiraterone & Prednisone yesterday. Apart from a sore arm for a week after the Prostap his main issues so far are fatigue, sleep problems and mood swings. Joint pain too but his joints were often sore pre-cancer so not sure if the meds are causing it or just the weather going for him. 🤷🏻‍♀️ He’s only had one mild hot flush so far, but presumably they may come along too. He loves good coffee so we bought ground decaf for the coffee machine and it’s really nice (from Kilted Coffee online). The only decaf tea he likes is Tesco’s own one. He’s got really keen on some of the teas from Bird & Blend too - not the fruity ones, but he’s loving experimenting with the others. He’s had battles with alcohol for years and the cancer diagnosis has set him back, as you can imagine. When he falls off the wagon the joint pain and depression can be bad, but I can’t really comment on how  it would be with drinking in moderation, as it’s really all or nothing for him.

Not sure if any of this is helpful at all but hopefully you’ll get started very soon. Good luck, and keep us posted how you get on. X

Edited by member 08 Nov 2024 at 19:36  | Reason: Not specified

User
Posted 09 Nov 2024 at 15:46

Hello Kazzy60

Thank you so much for posting.

Yes it has been very helpful. I managed to win against the GP - Pharmacy complex going backwards and forwards. Fortunately they are in the same building. GP didn't release the prescription, which happens quite often. It still needed to be signed off. Once tablets and Prostap were secure I then needed to make an appointment of the Prostap, which is now a week this Tuesday. Getting there.

I have always been a bit fearful of injections, started at an early age as I was brought up in Iran so we were for ever having inoculations against this and that, so I was happy to read that it was just a week. I had my shingles not long ago and it was really something else compared to the Flu and Covid. You touched on mood swings and this is something I am worried about. Can be a bit blue at times, tends to not last too long.

I plan to stop coffee and alcohol for the start, it's more routine than real enjoyment he said to himself, and see how it goes. My sense of taste at the moment isn't great. My sleep is variable at best, waking most mornings before 04:00 and find it difficult to get back to sleep.

I have an appointment to see what can be done with a pretty large hernia on Tuesday, which is the day I will be starting the bicalutamide. It's all go!

Kazzy I wish you and your husband well and will look out for your posts.

Thank you.

Andrew j

User
Posted 19 Nov 2024 at 20:18

After a week on bicalutamide I had my first Prostap injection, in my stomach, worried about arms being affected.

Will see how it goes and be prepared as possible.

Car went in for a major service and it's going to be eye watering, fortunately it's only money and we have it for the moment.

Reading some of the recent posts really shows how tough this PCa can be. I wish everyone better times.

 

 
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