I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error
12>

Journey just beginning

User
Posted 23 Mar 2023 at 09:54

Hi All,

Feel a bit of a fraud posting here, when my journey is only at its very earliest stages. GP found an abnormality after I requested a DRE two weeks ago. No symptoms that I know of, just a little voice in my head saying time to get a check before my 60th comes around! DRE resulted in a "2 week rule" referral to Royal Surrey's MRI scan unit, MRI lead to Urologist meeting within two days! Urologist showed me the pretty pictures (pretty scary actually), which showed at least one growth and a large dark area that he said should be light or white on the screen. That resulted in an instant prostate biopsy procedure (not much fun, but also not as bad as I expected knowing what they were going to do). Now just awaiting the big meeting for diagnosis on Friday (31st March) next week! I have to say that so far the NHS service has been brilliant. Now just a case of staying positive and hoping for the best next week. Have a wonderfully supportive wife, who will be there with me next week to share the news.

User
Posted 28 Mar 2023 at 10:58

Originally Posted by: Online Community Member
Once we get past the diagnosis phase, will try to find her a partner support group to give her an outlet

National Prostate Cancer Partner Support Group is a support group for partners only, and not the patient. It meets on Zoom. A few local support groups also run partner-only meetings.

Next meeting Tues 25 Apr 18:10 for 18:30 (which is a change of the originally planned date).

Edited by member 28 Mar 2023 at 11:07  | Reason: Not specified

User
Posted 09 Jun 2023 at 09:42

So the big guns are out now, Chemo cycle one started yesterday. Thought it worth chronicling in case useful for anyone else going to six sessions of adjuvant Docetaxil Chemo before Radiotherapy. They are trying to catch any micro mets that might not have showing on my clear PET PSMA scan.

So preparation was called for, blood test, meeting with Chemo Nurse sister and consents all signed. Even had a tour of the day unit to reduce any nerves! All between Monday and Wednesday this week (along with next Zoladex implant).

Packed a bag yesterday morning containing drinks, snacks, pre-med Steriods (had already taken four before bed and four on waking), phone, earplugs, iPad, book, hat (for wet Cold Cap hair afterwards) and of course wore comfortable clothes as per instructions. What I forgot was conditioner for the hair (they had some so lucky there) and a headband (yes a girls one) to keep the temples warmer and relieve the cap tightness when inflated with water.

After some consideration I opted for the cold cap not out of vanity, but as I am trying to keep working I did not want to wear my treatment so visibly for clients and colleagues, especially as I will be hunting my next contract soon! They took time checking my blood pressure (178 over 120, when normally 120 over 85) so I clearly was more stressed that I felt! Then we got started with the cold cap which has to be on for 30 mins before Chemo goes in. Actually it was fine for me, icy cold very quickly, especially as they wet your hair and put in the conditioner to stop the cap sticking to your hair after. I got really sting ache pains in my neck for first 10 mins, but after that everything was a ok with just some minor irritant around the edges up to all numb at 30 mins. No guarantee my hair will survive, but worth a try for sure and minimal discomfort. Music and distraction from my gorgeous wife helped to get me through the cooling phase really well. Oh and on advice from internet asked nurse on arrival if I could take 2 paracetamol to help, which she said was fine. That may have helped with the brain freeze as well so recommend. Tube a back of hat where the water come in and out pressed against the headrest and my neck, but a pillow behind the head and a reclined chair sorted that, which was essential as the cap becomes heavy over 3 hours. (they put eh chemo in slow 1st 2 times and the cold cap stays on for half an hour after as well as half an hour before). Nurses were great, even though I had to be stabbed three times to find a good vein. Drink loads for 2 days before an it will help them not have to do that to you! I did feel dizzy and shaky towards the end of the session (which was combination of the cold cap and perhaps the Docetaxil. Other patients we not chatty, but all absorbed in what they were doing which was fine with my good lady to chat with the whole time (except when playing loud music). Next post will be the after effects on the same day. I went in at 10am and was out at 1pm just for the record! :-) Feeling strong and feeling good so far!

User
Posted 01 Oct 2023 at 17:24
Hi all, so Chemo 6 now finally done and as before I have been swiped sideways mid way through Saturday after being treated Thursday afternoon. Nothing unusual, just all my energy gone and replaced with a red flushed face and neck lol. But the key thing is chemo now done and on to the next bridge! Scans over next two weeks, bone, MRI, CT to see what effect the chemo has had. Then Oncologist in 4 weeks to plan radiotherapy! In the meantime am going to enjoy getting better from this chemo, knowing I dont have another one as soon as I feel better lol.

In summary, chemo not great, but much more managable than I had expected. If I can sail through it with just some choppy waves, so can the next guys following on so take heart! And dont forget chocolates for the nurses when done!

Cheers, David

User
Posted 26 Oct 2023 at 07:33

So time for another update, and a photo change in honour of finishing chemo! This journey is one of ups and downs, which you have to try to ride with as best you can. Saw my Oncologist yesterday for a review of the scans taken after my chemo sessions. The prostate cancer has responded well and hormone therapy is keeping my PSA below 0.5 which is amazing. But the CT scan picked up that I have an abnormality in the wall of my esophagus and now I have to go for an endoscope (camera down the throat) and biopsies of the abnormal area. Not prostate cancer for such, but could be another "variety" at work! I hope and pray not, but within a couple of weeks we will know what extra challenge (if any) we are dealing with. A massive blow to my positive outlook initially, but have bounced back today. If good news great, if bad then we will face it together!  My wife as always being totally brilliant and right there with me! So what to learn from this? There will be worries and set backs for many of us along this journey, but staying positive is so important. Cancer loves misery! I will continue to focus of making every day a good one and continue to plan optimistically for a long future! New job interview tomorrow, so focusing on doing great and getting offered the new opportunity! Keep your heads up guys/ladies and focus on a bright future, we can beat this! Best wishes to all, David

Edited by member 26 Oct 2023 at 07:34  | Reason: Not specified

User
Posted 08 Jan 2024 at 19:55
Another update, Radiotherapy now well underway and just 7 more sessions to go! I have to say, i thought this would be a breeze but I was wrong! Radiotherapy does not hurt and the side effects are bearable, but I did not bargain for the bladder pain caused by having to be full before your pictures and treatment start! Totally unpredictable, whether you are going to fly through with minor discomfort, or end up in too much pain and having to bottle out of the process on the table and start all over again! Wow! One tip, take paracetamol just after water loading, it helps a little with the discomfort/bladder pain! Other side effects, mild neusea, discomfort getting started with wee, bladder feeling like a punch bag (after water loading), upset tummy (sudden and urgent) and wind! But take heart, you get through the days quickly and soon mine will be over! Yay! Hope all readers managed to have a great Christmas and New Year. Wishing you all the best news in 2024! We got this!! David
User
Posted 08 Jan 2024 at 20:04
oh, and one other update, throat scare looking good. They think it is just swelling caused by acid reflux. More tablets and another endoscopy check next week.
User
Posted 23 Mar 2023 at 20:09

Hi Kerm 63,

Sometimes, the wait for the diagnosis is the worst part.  Once you know what you're dealing with, you will hopfully be given lots of information by the medical team about possible treatment options.  That can raise fresh issues, of course: which one is best (most effective)?  (Also, which side effects would I like least?)  This website can help at that stage.  Ask other members on this forum as many questions as you like.  Someone will have experienced whatever treatment you're considering and will be able to share how they dealt with it.

You might want to try to distract yourself a little between now and the meeting on the 31st.  Can you get away somewhere for a few days?

Good luck.

JedSee

User
Posted 24 Mar 2023 at 00:33

Not a fraud at all Kerm63. Like Jedsee says this can actually be the worst part. The waiting and not knowing anything for sure just made us think the absolute worst. When we knew what we were dealing with it definitely felt better with just up and down days (still can be a bit like that).

Wishing you all the very best for your results next week and lots of positive vibes being sent your way.

Elaine

User
Posted 24 Mar 2023 at 06:52

Kerm63 as people have said waiting is the worst part. You will find that all the available treatment options will be made to you although you will have to be the one who selects the treatment path.
Also your dog is going to learn a lot about prostate cancer, probably more than your family and friends.
I found my solo dog walks very therapeutic. My dog always looked interested and supportive until up to the point she would see a squirrel.
I suppose dogs have their priorities tooπŸ€”πŸΏ
Rgds
Dave

Edited by member 24 Mar 2023 at 06:55  | Reason: Not specified

User
Posted 24 Mar 2023 at 11:21

Hi Kerm63.

Like you, last August I went for health check with no symptoms, although I am slightly older than you I was very active, running 3 mile a day & walking a further 2 hours a day.

My psa was 5 which caused a concern with g p ( any idea of your psa levels yet ) then off for mri’s biopsy’s etc.

I opted for surgery as I was given all options, carried out last October & quite pleased with my recovery up to now, I was back to almost my old routine after the 6 week rest period which only walking is recommended.

The thing about p c is you can be walking about not know you have it, as so many people are, the thing is some p c is more aggressive than others & the less aggressive doesn’t cause serious problems in a man’s lifetime.

Always best to catch it as early as possible though, which hopefully you have, treatments are improving by the week & are quite successful.

I know the uncertainty of waiting for results is daunting but try to keep up beat.

All the best Jeff.

 

User
Posted 28 Mar 2023 at 09:03

Hi Kerm

I was diagnosed at Ashford and St Peters under the 2 week rule and started HT treatment 5 weeks later after seeing the onco. Preparations for RT, Ct planning scan and gold seed markers etc, at St Lukes part of Royal Surrey. RT started 6 mo after HT at St Lukes. All staff at both sites were wonderful. 

PSA still <0.1 so fingers crossed.

Good luck to us all.

Peternigel

Edited by member 28 Mar 2023 at 09:03  | Reason: Not specified

User
Posted 05 Apr 2023 at 17:04
Oncologist today, they want to wait for the PET scan results. See if it has spread outside the local area in any significant way. Treatment path to be discussed after PET scan, but looking like they will throw everything at it, which suits me! HT, RT and Chemo as well!! No problem with me, anything to have the best chance of getting and remaining cancer free. Taking every opportunity to tell other guys to get tested, just one way of paying forward. Positive and upbeat, but can tell the mental battle will be harder than the physical treatments for sure. Not looking forward to the journey but glad the HT has started. To any others reading this post, keep you spirits up as that is more than half the battle. We can beat this! David
User
Posted 12 Apr 2023 at 18:09
I don't think they are taking your PET scan too seriously - once you start HT the PET scan becomes less reliable.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Apr 2023 at 00:08

Best of luck with your treatment David. Glad things are moving and you are on a curative pathway. Hope your wife is feeling better too. I know how bad I was when my husband was waiting and then diagnosed….and still now. Hope you’re both getting any support you need. Take care Elaine

User
Posted 13 Apr 2023 at 07:08

Good luck with your treatment David, I’m also T3b but N0M0 and  am into my RT treatment of 20 sessions. There will be ups and downs along the way but there’s lots of help annd support out there. If you have a Maggies Centre near you pop in and see them. I joined the Men’s Cancer support group which meets weekly and found it immensely helpful to talk openly (and listen)to others in the same position about everything and anything.

User
Posted 13 Apr 2023 at 12:28

Hi David

Looks like you are on the same diagnosis and treatment pattern as me, initially at St Peters Chertsey and then St. Lukes, Guildford. I was diagnosed T3b N0M0 Dec 22 and have been through the HT followed by RT plan.  Deemed too old and staging too high for surgery. I think I preferred RT/HT. As you have found out the specialist urology nurses are wonderful and caring and you will discover that the radiographers are too! You will also have added value with your gold seeds implant.

Only minor problems with RT (bowels!) which stopped June 22. I quite missed seeing the radiography and fellow patients every day but remarked that i hoped we didn't meet again under similar circumstances. They have a super new, advanced linac for treating us.

Onco stopped zoladex Sept 22 but the effects are still with me. PSA <0.1 but testosterone still well below average range. Maybe when it returns i shall feel less like c#ap.

Good luck with the treatment and pass on best wishes to the team.

Peternigel

.

User
Posted 30 May 2023 at 07:55

Thx for your reply Jed. So the next stop on this journey has been decided by my Oncology team. Docetaxil chemotherapy for 6 cycles, just in case I have micromets anywhere in my body that could surface at some point after radiotherapy (as outside the treatment area). Start my first cycle 8th June next week, and although only 6 cycles, will be on this part of the journey until mid-September! Fingers crossed it all goes well and I can keep active and working most days (at a slower pace!). Have not found any threads on here about Docetaxil treatment, so will do my best to capture the experience for anyone following along behind me! Cant say I am looking forward to it, but if it kills cancer cells I am up for it! New hairstyle here I come! πŸ˜€πŸ‘

User
Posted 30 May 2023 at 09:17

Thx for the directions Jellies and for sharing some of your top tips! Rest assured I am taking notes! Will ask the question of the Ongologist as well. They are not used to having well informed patients, but so far they have been pleasantly surprised to have a knowledgeable patient and not been phased at all by my questions! :-) I have thought about the cold cap treatment, but have decided to wear my hair loss with pride and have shorter sessions in the chair!

User
Posted 01 Jun 2023 at 11:55

Thx Roger. Am feeling strong and positive at the moment, so in a way looking forward to starting to fight back more aggressively against the cancer cells!! Good luck with your scans, one of the best pieces of advice I have read on here was from Michael. Waiting is part of the process, so don't wish the time away. Instead, spending it living every day to the full! Cheers, David

User
Posted 01 Jun 2023 at 12:04

That’s kind of you to say David.  Things going a little strangely for me just now, I am in for a blood transfusion at the moment.  I will update my post later when I know more about what is happening. 

Hope you are doing well mate 

Michael 

User
Posted 09 Jun 2023 at 15:39

So, on to the rest of Day One once I got home. Some soreness in the mouth and tongue almost within an hour or two, but minor. Definitely a bit wobbly in the legs and a little dizzy for a while. Tightness in the back of the neck and a background headache (not severe). Able to do a 20 min gentle walk with the dog, fine with very slight feeling of nausea so took first anti-sickness tablet at 4pm. Appetite fine and ate normally. 10pm - 8 hours after chemo, severe upset tummy with some stomach pains as warning for half hour before. Only 3 hours sleep in two 1.5 hour stints, but woke feeling surprisingly good (steroids responsible for both the lack of sleep and the feeling ok in the morning). Only other symptom was indigestion in the night, that was quickly sorted with a pill.

So all in all Day One Chemo has been fine and Day two also progressing well. Will be going into Day three wondering when the much talked about crash in how I feel will come as the sterioids wear off. Just starting to get a little shaky this afternoon as I type. Please feel free to ask any questions about Day One and Two of Chemo, will keep posting for the full first 7 days, in case of use to someone following on (although am sure we call react differently). Cheers, D

User
Posted 27 Jun 2023 at 16:05
Left the best until last. PSA just back and in three months has gone from 119 to 1.1 - I'll take that for now! :-)
User
Posted 07 Jul 2023 at 08:45

Thx Jed. Well Chemo 2 session went off without a hitch and the staff nurse got the canular in 1st time yay. Cold cap working well and much less uncomfortable this time (perhaps because I knew what to expect). Recommend download of Audible to your phone with subscription, you can listen to books instead of reading them yourself! Passed the time nicely, with food and drinks on tap thx to staff and attentive wife!! No bad after effects, except woke up with what looks like sunburn on face and neck. Apparently a common 48 hour aftereffect of docetaxil. Didn't have it last time, so always expect the unexpected! Now doing acupuncture for flushes as they are a little tiresome! After first session they are certainly no better yet, but will stick with it and see if it helps. Ping me any questions about chemo or cold capping whilst it is fresh in my mind. PSA 1.3, but Oncologist confident that is just a lab variance. Hope you are all doing well and let me know if living in the Guildford area if you'd be interested in joining the new Prostate Project support group named GPS for Guidance, Positivity and Support. First new meeting 18th August in Guildford Centre. Cheers, David πŸ‘Š 

User
Posted 28 Jul 2023 at 19:25

Hi David,

Hope you are doing o.k. I’ve been following this conversation as I am on a similar path, in fact I’m about 2 months behind you. I start my chemo next week. Anyway, my first post and I just wanted to thank you for posting your detailed experience of your chemo sessions. I’ve found it very useful and comforting. My chemo consultation and consent was done today and I asked for the cold cap having read about yours, as I would like to try keep what little I have left. Keep with the positive vibes, all will be well 😁

Spongebob

User
Posted 03 Aug 2023 at 12:20

Hi Kerm63,

Hope all is going well. My first chemo yesterday - experience almost exactly as you described for yours. So far so good! - Thanks again.

Sponge

User
Posted 26 Oct 2023 at 08:28

Hi David,

Your attitude is spot on. It’s so important to remain positive when going through this jourdeal! It really sounds like you’ve cracked it, and  all the support you’re getting helps enormously.

I hope it’s GOOD news for you in all respects and wish you all the best for the future no matter what.

Derek

User
Posted 26 Oct 2023 at 09:17

Good luck David, seems to be never ending having cameras, probes, piccs, and soon to be radio-bombs and rays etc bunged inside us whilst we continue to be up to the hilt in meds causing all kinds of hot flushes, puppy fat and shrivelled up bits - all good fun, well an experience anyway let’s say. Fingers crossed that everyone knows what they are doing and that it all works out well in the end. Excellent result for you on the PSA. And good luck with the job, you’ve more resolve for working than me, I’ve given up trying for s new role whilst going through this. (If you do want a laugh, my missus is on tv tonight (Bake off extra slice at 8pm), she’ll be the one with a cake featuring a ferret and expects to be suitably very embarrassed.) Keep your chin up!

chers

Spongebob

User
Posted 26 Oct 2023 at 09:41

Hi David

Stay positive mate. My younger brother has oesophageal cancer (we're quite well versed in my family - my mum has bowel cancer and I am in this exclusive club, as was my dad) and he has had chemo and then surgery to remove it. They are happy that they got rid of it all so he should be on the road to recovery now. Rest assured that IF they do find anything amiss in that area, they can deal with it.

All the best.

Ian.

User
Posted 18 Dec 2023 at 21:43
Quick update. After a bit of a pause, am now on my way with the Radiotherapy. First session done and all is well. Long may that continue! David
User
Posted 14 Jan 2024 at 17:31

3 more to go and counting David…the last one can be quite emotional, well for me anywayπŸ₯²πŸ₯²

Hope it goes  well and you can start to get your life back….well as much as HT will allow you to anyway😊

All the best,

Derek

User
Posted 17 Jan 2024 at 21:13
Hi David,

Well done, a good move and a good read. I went public on LinkedIn and found reading all the comments from my ex-colleagues really comforting. And importantly, it helped to spread the message to get checked out.

Best wishes for the future, make the most of it. 😬

SpongeBob.

User
Posted 22 Jan 2024 at 09:10

Take your gloves off! πŸ˜‰

Joking apart mate, apparently according to Google moisturising your finger tips might help. 

Edited by member 22 Jan 2024 at 10:06  | Reason: Not specified

User
Posted 22 Jul 2024 at 09:28

Hi David.

Thanks for the update. Its great news about your undetectable PSA but I'm sorry to hear about the side effects of HT. I hope they  improve.

Good luck.

 

Edited by member 22 Jul 2024 at 09:46  | Reason: Typo

User
Posted 05 Dec 2024 at 18:45

Great update Dave, super happy that your health remains true. Genuinely hopeful about your new endeavour.

User
Posted 10 Dec 2024 at 10:15

Originally Posted by: Online Community Member
Am trying to avoid doom scrolling about percentages or recurrence, or prognosis for T3N1M0 Gleeson 8's!! And I keep reminding myself that everyone has an expiry date, and no-one knows when that date might be, so be grateful for every day and make the most of what you have left not matter how many days that might be!! It is not important how many, what is important is how you live those days!!

Morning David.

I truly admire your positive, upbeat attitude, mate. Have a great Christmas.πŸ‘

Show Most Thanked Posts
User
Posted 23 Mar 2023 at 20:09

Hi Kerm 63,

Sometimes, the wait for the diagnosis is the worst part.  Once you know what you're dealing with, you will hopfully be given lots of information by the medical team about possible treatment options.  That can raise fresh issues, of course: which one is best (most effective)?  (Also, which side effects would I like least?)  This website can help at that stage.  Ask other members on this forum as many questions as you like.  Someone will have experienced whatever treatment you're considering and will be able to share how they dealt with it.

You might want to try to distract yourself a little between now and the meeting on the 31st.  Can you get away somewhere for a few days?

Good luck.

JedSee

User
Posted 23 Mar 2023 at 20:14

Thx JedSee, distraction sounds like a great idea. Perhaps take the dog to visit a beach for the first time, make sure we have a busy weekend. Luckily in the week my work takes my attention during the day! πŸ‘

User
Posted 24 Mar 2023 at 00:33

Not a fraud at all Kerm63. Like Jedsee says this can actually be the worst part. The waiting and not knowing anything for sure just made us think the absolute worst. When we knew what we were dealing with it definitely felt better with just up and down days (still can be a bit like that).

Wishing you all the very best for your results next week and lots of positive vibes being sent your way.

Elaine

User
Posted 24 Mar 2023 at 06:52

Kerm63 as people have said waiting is the worst part. You will find that all the available treatment options will be made to you although you will have to be the one who selects the treatment path.
Also your dog is going to learn a lot about prostate cancer, probably more than your family and friends.
I found my solo dog walks very therapeutic. My dog always looked interested and supportive until up to the point she would see a squirrel.
I suppose dogs have their priorities tooπŸ€”πŸΏ
Rgds
Dave

Edited by member 24 Mar 2023 at 06:55  | Reason: Not specified

User
Posted 24 Mar 2023 at 09:05

Thanks Elaine, very much appreciated. I think this has hit my wife harded than it has me at the moment! Once we get past the diagnosis phase, will try to find her a partner support group to give her an outlet. David

User
Posted 24 Mar 2023 at 11:21

Hi Kerm63.

Like you, last August I went for health check with no symptoms, although I am slightly older than you I was very active, running 3 mile a day & walking a further 2 hours a day.

My psa was 5 which caused a concern with g p ( any idea of your psa levels yet ) then off for mri’s biopsy’s etc.

I opted for surgery as I was given all options, carried out last October & quite pleased with my recovery up to now, I was back to almost my old routine after the 6 week rest period which only walking is recommended.

The thing about p c is you can be walking about not know you have it, as so many people are, the thing is some p c is more aggressive than others & the less aggressive doesn’t cause serious problems in a man’s lifetime.

Always best to catch it as early as possible though, which hopefully you have, treatments are improving by the week & are quite successful.

I know the uncertainty of waiting for results is daunting but try to keep up beat.

All the best Jeff.

 

User
Posted 28 Mar 2023 at 09:03

Hi Kerm

I was diagnosed at Ashford and St Peters under the 2 week rule and started HT treatment 5 weeks later after seeing the onco. Preparations for RT, Ct planning scan and gold seed markers etc, at St Lukes part of Royal Surrey. RT started 6 mo after HT at St Lukes. All staff at both sites were wonderful. 

PSA still <0.1 so fingers crossed.

Good luck to us all.

Peternigel

Edited by member 28 Mar 2023 at 09:03  | Reason: Not specified

User
Posted 28 Mar 2023 at 10:58

Originally Posted by: Online Community Member
Once we get past the diagnosis phase, will try to find her a partner support group to give her an outlet

National Prostate Cancer Partner Support Group is a support group for partners only, and not the patient. It meets on Zoom. A few local support groups also run partner-only meetings.

Next meeting Tues 25 Apr 18:10 for 18:30 (which is a change of the originally planned date).

Edited by member 28 Mar 2023 at 11:07  | Reason: Not specified

User
Posted 28 Mar 2023 at 11:25

Brilliant, thanks Andy. Have already talked to her about it and recommended she contact a support group, which she is up for. Will pass the details on to her. Three more days to go, unfortunately the Urology Specialist sent my GP and update letter and copied me in. Some I now know I have at least T3b Prostate Cancer and no doubt they will now do checks to see if it has just spread locally or further afield. Still feeling positive most of the time, have to know exactly what the mountain is to climb before getting on with it! :-)

User
Posted 31 Mar 2023 at 15:29
So, the journey continues. Meeting with Claire, brilliant nurse specialist with the best caring and kind manner! Diagnosis as follows, T3b N1 M unknown. PET scan in 6 weeks ( long queue ) to confirm no spread elsewhere, but no signs on MRI so they are exoecting to find nothing. She emphasised it is highly treatable and we are shooting for a cure, all very upbeat! Really pleased that it is treatable, as could have so easily been too late! Starting tablets today (receptor blocker to stop testosterone getting to the cancer cells) and in 10 days time will have first HT injection. Next meeting with Oncology team to plan radiotherapy, have been referred to their new "Pearl" trial. Not sure what that is yet, but sounds like they target more Lymph nodes just in case. Glad the wait is over and treatment started, feeling positive and determined to beat this thing! David
User
Posted 31 Mar 2023 at 15:30
Oh, PSA was 121 and 12 of 13 cores were cancer positive.
User
Posted 05 Apr 2023 at 17:04
Oncologist today, they want to wait for the PET scan results. See if it has spread outside the local area in any significant way. Treatment path to be discussed after PET scan, but looking like they will throw everything at it, which suits me! HT, RT and Chemo as well!! No problem with me, anything to have the best chance of getting and remaining cancer free. Taking every opportunity to tell other guys to get tested, just one way of paying forward. Positive and upbeat, but can tell the mental battle will be harder than the physical treatments for sure. Not looking forward to the journey but glad the HT has started. To any others reading this post, keep you spirits up as that is more than half the battle. We can beat this! David
User
Posted 12 Apr 2023 at 17:57

So now waiting for the PET scan date to come through and today had my first hormone injection / implant - Zoladex I think it was called. Blood pressure has gone skyward in last 7 days, perhaps thx to the little white pills they gave me to minimise any spike in testosterone. 168 over 120, when was 120 over 65. Going to have to get that under control lol. Implant injection not bad, like being stung by a small wasp on Zoladex πŸ˜‚ Now we will see which side effects I will encounter! πŸ˜€

Edited by member 12 Apr 2023 at 17:59  | Reason: Not specified

User
Posted 12 Apr 2023 at 18:09
I don't think they are taking your PET scan too seriously - once you start HT the PET scan becomes less reliable.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Apr 2023 at 00:08

Best of luck with your treatment David. Glad things are moving and you are on a curative pathway. Hope your wife is feeling better too. I know how bad I was when my husband was waiting and then diagnosed….and still now. Hope you’re both getting any support you need. Take care Elaine

User
Posted 13 Apr 2023 at 07:08

Good luck with your treatment David, I’m also T3b but N0M0 and  am into my RT treatment of 20 sessions. There will be ups and downs along the way but there’s lots of help annd support out there. If you have a Maggies Centre near you pop in and see them. I joined the Men’s Cancer support group which meets weekly and found it immensely helpful to talk openly (and listen)to others in the same position about everything and anything.

User
Posted 13 Apr 2023 at 12:28

Hi David

Looks like you are on the same diagnosis and treatment pattern as me, initially at St Peters Chertsey and then St. Lukes, Guildford. I was diagnosed T3b N0M0 Dec 22 and have been through the HT followed by RT plan.  Deemed too old and staging too high for surgery. I think I preferred RT/HT. As you have found out the specialist urology nurses are wonderful and caring and you will discover that the radiographers are too! You will also have added value with your gold seeds implant.

Only minor problems with RT (bowels!) which stopped June 22. I quite missed seeing the radiography and fellow patients every day but remarked that i hoped we didn't meet again under similar circumstances. They have a super new, advanced linac for treating us.

Onco stopped zoladex Sept 22 but the effects are still with me. PSA <0.1 but testosterone still well below average range. Maybe when it returns i shall feel less like c#ap.

Good luck with the treatment and pass on best wishes to the team.

Peternigel

.

User
Posted 13 Apr 2023 at 17:10
Good news today, PET scan booked for Friday in two weeks time. A week after that and hopefully will know fully what stage etc I am at and have a better idea on treatment. Now just two weeks of wondering if each ache and pain is cancer related! πŸ˜‚
User
Posted 13 Apr 2023 at 17:10
Good news today, PET scan booked for Friday in two weeks time. A week after that and hopefully will know fully what stage etc I am at and have a better idea on treatment. Now just two weeks of wondering if each ache and pain is cancer related! πŸ˜‚
User
Posted 13 Apr 2023 at 17:28
πŸ‘
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Apr 2023 at 11:44
Well today brings an interesting and unwelcome side effect, orgasm headache! Most unpleasant experience, leaving me with an immediate blinding headache that took fully 15 mins to subside a little. That will teach me to test if the equipment is still working! Suspect my blood pressure went through the roof! πŸ˜‚πŸ˜‚
User
Posted 19 Apr 2023 at 20:45

So that's what a mind blowing orgasm does to you 😁. If you think your blood is erratic it might be worth buying a blood pressure monitor so you can check it regularly. 

User
Posted 19 Apr 2023 at 21:18
lol, thx Chris. Already monitoring blood pressure twice a day. Am sure it will have been pressure related, will think twice about any repeat performances whilst on these meds!! πŸ˜‚πŸ˜‚
User
Posted 19 Apr 2023 at 23:50

Kerm, as you said in a previous post we now attribute all pains, symptoms etc. to cancer. I remember first time i had an orgasm related headache, about 15 years ago. Long before I had cancer or zoladex. I did feel a bit guilty, it's quite acceptable for a woman to say "I've got a headache", but as soon as the man has done the deed, and the woman is now all up for cuddles, for the man to say "I've got a headache" seems a bit mean. Still that's equality for you. It is just one of those things, it has probably happened five times since, but if you multiply 365 by 15 you will see this is actually not very common for me.

Keep your todger working, it needs the exercise, monitor your blood pressure (just in case). Hopefully you will be off zoladex in a few years and all will be back to normal.

Dave

User
Posted 20 Apr 2023 at 06:54

Try loosening the head clamps and don't use the ping pong ball!

User
Posted 20 Apr 2023 at 16:45

Thx Dave, will heed your advice! Am quickly getting used to having no dignity when it comes to my medical team, so will also notify my "symptom" at next doc or nurse meeting tomorrow. Have completely forgotten why I am seeing them, but am sure they will tell me!! You get a bit lost in all the whirlwind of appointments!! πŸ˜‚

User
Posted 12 May 2023 at 13:51

So, update on progress. Had my PET PSMA Scan to look for any spread outside the local area of the prostate. Was a long two weeks to get the results, but it came back clear! So I am now officially T3bN1M0 thank god! Next steps are to continue with the HT for two more months (just had second implant/injection) and then will be Radiotherapy and Chemo at the same time. Have also signed up for the PEARLS trial, which just means a wider dose of radiation to take in Lymph nodes higher up in the lower spine area to see if that helps prevent recurrence. 50/50 chance of being in the active group or the control group. All in all, doing well and staying positive. PSA on the way down from 119 to 43 in just one month!! Learning more about myself and more about Prostate Cancer all the time, also learning to really make the most of everyday. :-)

User
Posted 12 May 2023 at 18:39

Hi Kerm 63,

That's great news - about the PSMA PET Scan, the big drop in PSA levels, and obtaining a place on the PEARLS trial.

And yes, enjoying your life is what makes it worthwhile.

Good luck to you.

JedSee.

 

User
Posted 30 May 2023 at 07:55

Thx for your reply Jed. So the next stop on this journey has been decided by my Oncology team. Docetaxil chemotherapy for 6 cycles, just in case I have micromets anywhere in my body that could surface at some point after radiotherapy (as outside the treatment area). Start my first cycle 8th June next week, and although only 6 cycles, will be on this part of the journey until mid-September! Fingers crossed it all goes well and I can keep active and working most days (at a slower pace!). Have not found any threads on here about Docetaxil treatment, so will do my best to capture the experience for anyone following along behind me! Cant say I am looking forward to it, but if it kills cancer cells I am up for it! New hairstyle here I come! πŸ˜€πŸ‘

User
Posted 30 May 2023 at 08:46

You’ll find some threads under “Docetaxel” or “Taxotere”.  I completed my chemo earlier this year and now on my last week of RT.  Similar diagnosis with spread detected to pelvic lymph nodes.  I did the cold cap thing so didn’t lose any hair.  But after chemo finished I caught a chill and ended up back in hospital for four days so while it is very doable don’t underestimate how much it knocks you by the end.  My one piece of advice is to plan something nice for yourself in the last week of recovery between cycles to keep the spirits up.  RT is just a relentless slog of going in each day.  It is like ground hog day for the seven or eight weeks and fatigue builds up.  But again, very doable and I haven’t had any nasty side effects. 
Am also on 3 years ADT with apalutamide (the drug is called Erleada) on top as per TITAN trial.  Sometimes they add an extra hormone drug to maximise effectiveness of ADT treatment and it might be worth asking about that.  Sounds like you have the right attitude which is half the battle so good luck with everything πŸ’ͺ

User
Posted 30 May 2023 at 09:17

Thx for the directions Jellies and for sharing some of your top tips! Rest assured I am taking notes! Will ask the question of the Ongologist as well. They are not used to having well informed patients, but so far they have been pleasantly surprised to have a knowledgeable patient and not been phased at all by my questions! :-) I have thought about the cold cap treatment, but have decided to wear my hair loss with pride and have shorter sessions in the chair!

User
Posted 31 May 2023 at 18:42

Hi you are not a fraud mate. I know how you feel been shown scan images today now waiting for ct and bone scans so know how you feel. 

Stay Strong

 

 

User
Posted 01 Jun 2023 at 11:55

Thx Roger. Am feeling strong and positive at the moment, so in a way looking forward to starting to fight back more aggressively against the cancer cells!! Good luck with your scans, one of the best pieces of advice I have read on here was from Michael. Waiting is part of the process, so don't wish the time away. Instead, spending it living every day to the full! Cheers, David

User
Posted 01 Jun 2023 at 12:04

That’s kind of you to say David.  Things going a little strangely for me just now, I am in for a blood transfusion at the moment.  I will update my post later when I know more about what is happening. 

Hope you are doing well mate 

Michael 

User
Posted 09 Jun 2023 at 09:42

So the big guns are out now, Chemo cycle one started yesterday. Thought it worth chronicling in case useful for anyone else going to six sessions of adjuvant Docetaxil Chemo before Radiotherapy. They are trying to catch any micro mets that might not have showing on my clear PET PSMA scan.

So preparation was called for, blood test, meeting with Chemo Nurse sister and consents all signed. Even had a tour of the day unit to reduce any nerves! All between Monday and Wednesday this week (along with next Zoladex implant).

Packed a bag yesterday morning containing drinks, snacks, pre-med Steriods (had already taken four before bed and four on waking), phone, earplugs, iPad, book, hat (for wet Cold Cap hair afterwards) and of course wore comfortable clothes as per instructions. What I forgot was conditioner for the hair (they had some so lucky there) and a headband (yes a girls one) to keep the temples warmer and relieve the cap tightness when inflated with water.

After some consideration I opted for the cold cap not out of vanity, but as I am trying to keep working I did not want to wear my treatment so visibly for clients and colleagues, especially as I will be hunting my next contract soon! They took time checking my blood pressure (178 over 120, when normally 120 over 85) so I clearly was more stressed that I felt! Then we got started with the cold cap which has to be on for 30 mins before Chemo goes in. Actually it was fine for me, icy cold very quickly, especially as they wet your hair and put in the conditioner to stop the cap sticking to your hair after. I got really sting ache pains in my neck for first 10 mins, but after that everything was a ok with just some minor irritant around the edges up to all numb at 30 mins. No guarantee my hair will survive, but worth a try for sure and minimal discomfort. Music and distraction from my gorgeous wife helped to get me through the cooling phase really well. Oh and on advice from internet asked nurse on arrival if I could take 2 paracetamol to help, which she said was fine. That may have helped with the brain freeze as well so recommend. Tube a back of hat where the water come in and out pressed against the headrest and my neck, but a pillow behind the head and a reclined chair sorted that, which was essential as the cap becomes heavy over 3 hours. (they put eh chemo in slow 1st 2 times and the cold cap stays on for half an hour after as well as half an hour before). Nurses were great, even though I had to be stabbed three times to find a good vein. Drink loads for 2 days before an it will help them not have to do that to you! I did feel dizzy and shaky towards the end of the session (which was combination of the cold cap and perhaps the Docetaxil. Other patients we not chatty, but all absorbed in what they were doing which was fine with my good lady to chat with the whole time (except when playing loud music). Next post will be the after effects on the same day. I went in at 10am and was out at 1pm just for the record! :-) Feeling strong and feeling good so far!

User
Posted 09 Jun 2023 at 15:39

So, on to the rest of Day One once I got home. Some soreness in the mouth and tongue almost within an hour or two, but minor. Definitely a bit wobbly in the legs and a little dizzy for a while. Tightness in the back of the neck and a background headache (not severe). Able to do a 20 min gentle walk with the dog, fine with very slight feeling of nausea so took first anti-sickness tablet at 4pm. Appetite fine and ate normally. 10pm - 8 hours after chemo, severe upset tummy with some stomach pains as warning for half hour before. Only 3 hours sleep in two 1.5 hour stints, but woke feeling surprisingly good (steroids responsible for both the lack of sleep and the feeling ok in the morning). Only other symptom was indigestion in the night, that was quickly sorted with a pill.

So all in all Day One Chemo has been fine and Day two also progressing well. Will be going into Day three wondering when the much talked about crash in how I feel will come as the sterioids wear off. Just starting to get a little shaky this afternoon as I type. Please feel free to ask any questions about Day One and Two of Chemo, will keep posting for the full first 7 days, in case of use to someone following on (although am sure we call react differently). Cheers, D

User
Posted 27 Jun 2023 at 13:07
So that went fast! Now three weeks since chemo session 1 and I have to say that so far so good. Other than some sickness feelings when concentrating I have been able to keep working and just had to make some compromises in the first week. That said, definately been down on energy reserves. Antibiotics last week, as was developing tonsillitis and still taking them now. Had bloods done Monday (yesterday) in prep for next session on Thursday. Call today from Oncologomist to say am going to have another rest week, as liver function showing signs of distress!! Dang it!! Now have a new specialist to go see in due course, wish I could say it was the alchol, but no chance of that. Keeping positive, as should you all out there!! Wishing you all strength and happiness. David
User
Posted 27 Jun 2023 at 16:05
Left the best until last. PSA just back and in three months has gone from 119 to 1.1 - I'll take that for now! :-)
User
Posted 27 Jun 2023 at 21:09

Kerm63

That's fantastic news.  Enjoy the break!

JedSee.

User
Posted 07 Jul 2023 at 08:45

Thx Jed. Well Chemo 2 session went off without a hitch and the staff nurse got the canular in 1st time yay. Cold cap working well and much less uncomfortable this time (perhaps because I knew what to expect). Recommend download of Audible to your phone with subscription, you can listen to books instead of reading them yourself! Passed the time nicely, with food and drinks on tap thx to staff and attentive wife!! No bad after effects, except woke up with what looks like sunburn on face and neck. Apparently a common 48 hour aftereffect of docetaxil. Didn't have it last time, so always expect the unexpected! Now doing acupuncture for flushes as they are a little tiresome! After first session they are certainly no better yet, but will stick with it and see if it helps. Ping me any questions about chemo or cold capping whilst it is fresh in my mind. PSA 1.3, but Oncologist confident that is just a lab variance. Hope you are all doing well and let me know if living in the Guildford area if you'd be interested in joining the new Prostate Project support group named GPS for Guidance, Positivity and Support. First new meeting 18th August in Guildford Centre. Cheers, David πŸ‘Š 

User
Posted 07 Jul 2023 at 09:15

Hi David

Yes, I would be very interested in joining the support group as I live in Shepperton. Will not be around for 18th August unfortunately. Look forward to receiving details. Attended St Lukes for RT otherwise St Peters Chertsey.

Peternigel

User
Posted 07 Jul 2023 at 09:22

That's great Peter. I will PM you with my email. If you could reply with yours I'll make sure we send you all the details of the meetings. Thanks very much, David

User
Posted 28 Jul 2023 at 19:25

Hi David,

Hope you are doing o.k. I’ve been following this conversation as I am on a similar path, in fact I’m about 2 months behind you. I start my chemo next week. Anyway, my first post and I just wanted to thank you for posting your detailed experience of your chemo sessions. I’ve found it very useful and comforting. My chemo consultation and consent was done today and I asked for the cold cap having read about yours, as I would like to try keep what little I have left. Keep with the positive vibes, all will be well 😁

Spongebob

User
Posted 29 Jul 2023 at 16:46

Hi Spongebob,

Apologies for the radio silence, it is really easy to get wrapped up in your treatment cycle to the exclusion of all else! One to watch out for I guess! All progressing well, have now done Chemo 3 this week so 3 more to go. Cold cap defo working, but last time around it gave me a headache for last hour that had me counting down the minutes! Chemo 2 exposed an issue with my liver, but having read that my arythmia medication can cause hapatic issues i cut my dose in half and liver stats now better than my baseline! Of course that also could be quitting alcohol for now, as my beautiful wife reminds me! Chemo seems to make me tired faster each time, steroids kept me going for the day after, but knackered by the evening! Just pace yourself and rest when you need to! All in all, chemo seems very doable. The process on the day is fine, and then you just take it as it comes afterwards! Week two and three after each session are much easier. Best of luck with your treatment Spongbob, you've got this! 

User
Posted 30 Jul 2023 at 13:49

Hi Kerm, Thanks, glad to hear that you are still on course with just 3 more to go.  I have my first chemo coming up on Wednesday, with a PICC line going in on Monday, I’m already knackered just thinking about it and the side effects. I do worry about the prospect of being too tired all the time amongst all the other stuff that might happen. Although, comforting to know that most side affects can be addressed. This whole business still seems very, very surreal, but unfortunately it is happening, no matter how many times I wake up!  But, c’est la vie, chin up and all that positive stuff, trying to stay active and even almost completely cut out the booze (for now anyway). Good luck and keep up with the updates, very useful.

Spongebob

User
Posted 03 Aug 2023 at 12:20

Hi Kerm63,

Hope all is going well. My first chemo yesterday - experience almost exactly as you described for yours. So far so good! - Thanks again.

Sponge

User
Posted 23 Aug 2023 at 23:49

Good to hear Sponge Bob. Brace yourself, because they do seem to add up as you go forwards. Still managable, but a little tougher to recover each time! Have had 4 now, taken 4 days to feel stronger and be able to do my normal hill walk with the dog! White blood cells count impacted each time now, so have booster injections 2 and 3 days after to help them bounce back. Still cold cap using and still have hair! Will be good to finish chemo, just two more to go! Then one month rest, before Radiotherapy! πŸ˜‚πŸ˜‚ Still upbeat and positive, will beat this cancer thing! David

User
Posted 24 Aug 2023 at 17:43

Hi David,

Great to hear that you are cracking on with it o.k. You sound a bit like me taking the dog for a walk up the hill as it is what I do everyday in attempt to keep active. I had my 2nd chemo cycle yesterday, so far so good, I reckon I've had it quite lucky with my only side effects being bouts of hiccups. Well, and obviously the energy crash which comes on days 2,3 & 4 and subsequent tiredness over the slow recovery over the following couple weeks.

I had an interesting chat with the nurse on the bus about the anti-sickness tablets. I'm prescribed 2 x day anti sickness  (Onadansetron) for 5 days, and 5 days of 3x day anti-sickness 'when required' (Metoclopramide). For cycle one I blindly followed the instructions and took all the Onadansetron and I took just one Metoclopramide in the hope that it would help the hiccups I was having at the time. Anyway, the nurse advised that I was probably over-medicating for the anti-sickness, saying that docetaxel isn't that bad for inducing sickness 🀒. One of the potential consequences of taking this anti-sickness medication is constipation! Therefore I have decided to lay of these tablets and only take them if and when needed. I have always stood up well to travel sickness, and sickness after getting pi$$ed etc, so lets see how it goes. So far it is working out well and my bouts of hiccups are significantly reduced from the levels I experienced in the first cycle.

The cold cap too appears to be working, at least what little hair I have still appears to be there! My body hair is falling out though, I'm leaving little curly silver trails all over the house 😁. Mind you I am looking forward to one of the only benefits of this and that is for when my nose and ear hair falls out.

Anyway, like you I am beginning to turn my attention to upcoming radiotherapy. I had a call from the radiotherapy doctor about 3 weeks ago. I was offered options of: (1) Combined HDR brachytherapy and external beam; (2) External beam. Both options subject to findings from the pe-radiotherapy scan. I've been giving this some considerable thought. Out of interest have you been given similar options? What are your thoughts?

Regards 

Sponge 

User
Posted 10 Sep 2023 at 09:19

Hi Sponge,

Good to hear you are tolerating the chemo well, just bear in mind it may get a little tougher after session 3, mine did! Oncologist not talking to me yet about radiotherapy, she wants the chemo done first, then scans to see what has happened to the cancer in the pelvis area. So finish chemo end September (one more to go yay!) and then scans etc. Radiotherapy plan to come out after, but expecting golden ball inserts for targeting!!

Keep going, and we'll get through this fine!! 

Cheers, David

 
Forum Jump  
12>
©2024 Prostate Cancer UK