Cheshire Chris's Treatment Thread

User

Posted 22 Sep 2018 at 19:40

Chris

The hormone treatment I’m on causes what the Oncologist called moments of emotional instability. I would all of a sudden be thinking of what was to come and also burst into tears, if you Research ADT emotional incidents are common.

Give yourself time Chris, you may be trying to run before walking

User

Posted 22 Sep 2018 at 21:42

Yup, can confirm.

I’ve been in “boo boo I’m going to die, poor me” mode all week.

Tiredness, illness, overthinking, too much bl**dy internet research can all mess you up.

Humour really helps. I watched Deadpool 2 yesterday and it lifted me out of the funk.

User

Posted 23 Sep 2018 at 14:03

Feeling absolutely fine again today - amazing what a difference a nice sunny day makes! I've just been for a two and a half mile walk (at a slower than normal pace, admittedly) and had no pain or discomfort during or after it at all. That's the furthest I've walked since before I had my aneurysm operation at the end of July. OK, I'm pretty shattered, and I'm glad I didn't walk any further, but I'm happy I was able to do it with reasonable comfort.

Three weeks now since I was sliced an diced, and the surgical wounds continue to heal well. I don't really notice much day-to-day change, but I take a photograph of them every day on my phone (sad, I know!) and when I compare the pictures from those from a week previously the difference is obvious.

Chris

User

Posted 23 Sep 2018 at 18:11

Glad things seem too be going well Chris.

User

Posted 11 Oct 2018 at 15:36

Today I saw my kidney surgeon for a 6-week post-op follow-up. Pretty good news; he said that the lab results show a very good negative surgical margin, but that it's a very good thing it was caught when it was because the tumour was starting to break through the capsule wall into the layer of fat surrounding the kidney. He also said that it's fortunate he did a full nephrectomy rather than the partial that was planned, because if he had done a partial, with these lab results he'd be going back in to remove the rest.

So, I'm "cured", but he's classified my kidney cancer as "intermediate risk", meaning there's a small risk (<5%) that it'll show up somewhere else at some time in the future. I'll be having a "baseline" abdominal and chest CT scan in the next few weeks, and then annual scans for the next five years which will be compared with that baseline.

The 5 surgical wounds, one large and 4 small, have all completely closed up now, and he said that in a year they should be no more than faint lines.

So, all things considered, pretty good news. I think I can now reasonably say that I used to have kidney cancer, but don't have it any more! Two major conditions sorted, one more - the prostate cancer - to go.

I think this calls for a celebratory cup of tea!

Chris

User

Posted 11 Oct 2018 at 16:33

I’m full of admiration Chris. I love your candid , stoic posts which I know have a hidden stress behind them. Your courage shows through and I wish you nothing but the best. My fingers are crossed.

If life gives you lemons , then make lemonade

User

Posted 11 Oct 2018 at 16:48

You're very kind, Chris, but I'm the last person in the world you'd call "courageous"! There are people on this site who are far, far worse off than me, and I'd much rather not be having to deal with any of this stuff. The only good news in any of this is that, thus far, the treatment's been pretty successful, and I take the view that you've just got to try to handle things one step at a time. I'm not looking forward to my RT next Feb at all, but again it needs doing so I'll deal with that when it happens. At least I've got a couple of nice trips arranged for between now and the RT.

Cheers,

Chris

User

Posted 11 Oct 2018 at 17:56

Well enjoy your trips to the full mate. I’ve been grasping at every opportunity. Date nights , holidays with friends , holidays with family , mini cruise just with my son this half-term , painting breaks etc etc. I’m enjoying every minute of treatment free life to the full and will tackle it when they see something tbh. And I’m a school caretaker now also , as well as lunchtime assistant and volunteer reader. It’s all good despite an expected psa of over 100 January next year , and trying to put off HT desperately. I think you’re a bit of a hero anyway .....

If life gives you lemons , then make lemonade

User

Posted 11 Oct 2018 at 18:12

" I think this calls for a celebratory cup of tea! "

I think I'd be having something a little stronger than that Cheshire Chris!

Brilliant news for you in any case!

Best Wishes ..
Luther

User

Posted 13 Oct 2018 at 09:36

That is great news Chris. Sounds like your surgeon is excellent.

Ian

User

Posted 09 Nov 2018 at 20:36

Originally Posted by: Online Community Member

update from me Chris, had my review today at the 8 week post RT point. This is pretty standard, Oncologists all say you need this period for things to settle down. To the point, after weeks of agonising waiting my PSA At review was 0.5. This is very good I’m told and means the RT was a success. I asked the oncologist if I could stop HT after 18 months, she reinforced 3 years was recommended for people like me in the Gleason 9 club, but she fully supported my QoL reasons to stop at 18 months. I’ll be on 4 monthly PSA tests for the next year, then as I’m stopping HT early, 4 monthly for another year. All I all the best outcome I could have had. So don’t dread your RT mate, it’s vital and does the job. I’m always around if you want to chat about the whole RT thing

alan

User

Posted 18 Nov 2018 at 18:49

Been a while since I posted, so I thought I'd add a quick update.

I've now been on bicalutamide for three months, and it's not been particularly pleasant. The physical stuff hasn't been too bad; I've had a total and utter loss of libido, which I guess is a good thing in that it shows that the drug is working. My penis has lost almost all sensation and just feels like a piece of dead meat. Distinct "shrinkage" caused, presumably, by the lack of "exercise". Things are still functional - if I set my mind to it I can ejaculate, but all that comes out now when I do so is about 3 drops of liquid, which I guess again I should regard as a positive sign that the HT is working. I've so far avoided things like hot flushes.

The worst thing about being on the bicalutamide is that it's completely destroyed my ability for sustained thought or serious concentration on anything - it feels as if my head is stuffed with cotton wool, if that makes any sense - and I just find myself drifting off into a sort of empty nothingness unless I make a conscious effort to stay "with it". Is this a normal side-effect of bicalutamide, I wonder?

I'm seeing my oncologist again next Monday, 26th Nov, so in preparation for that I had another PSA test on Friday, my first one since May. At the last test my PSA was 32. With all the symptoms I'm experiencing I'm sure the HT must be working, but it is a little stressful waiting for the test result. I hope I'll get it on Tue or Wed this week.

I'm almost completely recovered from the kidney surgery now - just a muscular twinge to remind me if I overdo things! I had a CT scan to check the progress of both the kidney surgery and the aneurysm surgery the week before last and I'm seeing the surgeon this Wed to find out the results of that.

I went back to work part time the week before last, which has gone reasonably well. The mental "wooliness" is proving a challenge; I'll just have to hope I can learn to live with it. If not I'll have to bring forward my retirement, which wouldn't be the worst thing in the world!

That's about it from me, I think. I'll post again when I know my PSA score. It's tough waiting for it!

Cheers,

Chris

Edited by member 18 Nov 2018 at 18:51 | Reason: Not specified

User

Posted 18 Nov 2018 at 19:11

Hi Chris

My PSA reading at the end of January was 38 then at my next test on the 11th of June it was six

After 20 fractions of radiotherapy my PSA reading is now 0.5 (my nadir)

I can agree with everything you say about libido and ejaculate, I can also get there but as you say it’s just two or three drops of clear liquid.

I now need to have three PSA readings taken over the next 12 months that show no increase above my nadir. If I get three increases in a row it means my cancer has started up again and I will need to formulate a new treatment plan

So with your reading being 32 I would expect yours to be at least in single figures please update me when you know what you have

I am on Triptorelin, an LHRH antagonist, which I get every three months via an intramuscular injection. I have to say I get none of the symptoms that you are getting to do with concentration and woolly head.

Anyway good luck and my best wishes over the next few weeks

Alan

User

Posted 18 Nov 2018 at 19:26

Thanks, Alan. I'll certainly let you know when I get my PSA results!

Despite the fuzzy thinking I've been enjoying life for the last few months, so hopefully I'll stay in the good place.

Great news about your RT results. Are you fully recovered from all the physical side-effects now (diarrhoea, etc)?

Cheers,

Chris

User

Posted 18 Nov 2018 at 19:31

Chris

The diarrhoea went on for a few weeks, which was really quite awful but last three weeks I’ve been totally free of it

I think that urinating frequency was also not so good mainly due to the fact of getting up three or four times a night was very tiring but that has now stopped completely and I am conscious not to drink too much liquid after 6 o’clock at night

I may have mentioned this but my treatment with IMRT radiotherapy coupled with ultrasound location meant but I haven’t had any lasting side-effects the Bristol oncology Centre is really quite a fantastic place

User

Posted 19 Nov 2018 at 04:13

My 87 year old friend was on Casodex for two years and he reports no side-effects whatever. I have never discussed his libido or the quality and quantity of his ejaculate however.....😉

At the last consultation with his urologist, she told him to cut out the Bicalutamide following a recent PSA increase, as the cancer starts to ‘feed’ off it after a time. She predicts a reduced PSA reading at his next PSA test in a couple of months. How strange is that?

He is also on quarterly injected hormone implants.

Cheers, John.

User

Posted 19 Nov 2018 at 11:27

OK, had my PSA result: 15.3, so it's more than halved since my baseline reading of 32 back in May. I suppose it could have been lower, but it's going in the right direction, and I've spoken to the PCUK nurse who said that it was really all one might reasonably expect.

Cheers,

Chris

User

Posted 19 Nov 2018 at 11:35

Chris

Well done.

I can't find it in your history - why were you told RT/HT with such a low Gleason score?

User

Posted 19 Nov 2018 at 11:41

Because there's a concern that my relatively high PSA isn't really consistent with G3+4, so there's a decent chance that it has actually spread into the surrounding lymph nodes, although not at a "detectable" level. Hence the decision to go with RT which will let them "blast" a wider area than surgery could do.

Chris

User

Posted 19 Nov 2018 at 12:24

OK - bl**dy disease never makes it easy.

Lets hope the PSa is in a downward spiral.

I'll cross fingers for you!

User

Posted 19 Nov 2018 at 12:38

Thanks, Pete - much appreciated!

Cheers,

Chris

User

Posted 28 Nov 2018 at 20:39

I saw my oncologist on Monday. He said that although it’s obviously good that my PSA is going down, he would have liked to see a more rapid decline. Nothing at all to worry about, simply that different people react to drugs differently. So, I’m still having my RT in Feb, but I’m having another PSA test just before then. If my PSA continues to fall, all well and good. If not, my oncologist plans to switch me from bicalutimide tablets to triptolerin injections. Hey ho. Hopefully it won’t come to that! While I was at the meeting I signed the RT consent forms, and today (Wed) an appointment arrived for an RT planning session on Mon 4th Feb, so I feel as if things are moving along now.

We’re getting there!

Cheers,

Chris

User

Posted 29 Nov 2018 at 07:15

Ive been on Triptorelin since April Chris and it’s not so bad mate. RT planning is where you get your Baseline CT scan and tattoos and enema packs!

As ive said before, Triptorelin got me from 38 to 6 from 24th April to 11th June

User

Posted 29 Nov 2018 at 07:46

Not everyone gets enema packs- it caries from hospital to hospital and patient by patient

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

User

Posted 29 Nov 2018 at 08:47

Yes, I thought of you, Alan, when he mentioned the triptorelin. It certainly seems to have been effective in your case, and I've no particular concerns about going on it other than a general dislike of injections. (I'm a wimp ).

Cheers,

Chris

Edited by member 29 Nov 2018 at 08:48 | Reason: Not specified

User

Posted 29 Nov 2018 at 09:36

Chris, Triptorelin is an intra muscular suspension and a doddle, Zoladex for example is a pellet and having seen a video of its application I vote Triptorelin 👍but that’s me being a wimp.

I accept Lyns comment about the enemas, but I can only comment I suppose on my treatment schedule, which is very recent, in August this year I got IMRT RT at Bristol Oncology Centre and my Radiotherapy team stressed the importance of enemas to move the rectum away from the prostate and drinking 3 cups of water to lift the bladder from the prostate. As I had a live ultrasound probe at every fraction my treatment would not have proceeded every day unless my Radiotherapy team were happy that my preparation was correct to mitigate collateral damage to the 2 most at risk adjacent organs. I did have 1 fraction suspended as i had not drunk enough and had to go to the loo and restart drinking. This delayed my fraction by 90 minutes, I was more careful after that

Edited by member 29 Nov 2018 at 09:41 | Reason: Not specified

User

Posted 29 Nov 2018 at 11:14

Thanks, Alan. Your accounts of your experience have been very helpful indeed to me.

Next thing on my agenda is a couple of nice holidays to make up for all the travel I've had to cancel since I was diagnosed back in May. I've got a week's photographic holiday in the Scottish highlands (Glen Coe) over Christmas, and then a 17-day trip to Egypt in January. I get back from that on 29th Jan, then have my RT planning the following week. So lots to look forward to .

Cheers,

Chris

Edited by member 29 Nov 2018 at 11:16 | Reason: Not specified

User

Posted 29 Nov 2018 at 11:45

Chris,

I hope your shutter doesn’t freeze up in sunny Scotland....do you have de-misters on your lenses? At least there won’t be any midges.

We are going to Hurghada in Egypt for two weeks over Christmas. Looking forward to it as we had to cancel two cruises this year, because of my ‘little difficulty down below’ and tests and operations virtually for a year.

Cheers John.

User

Posted 29 Nov 2018 at 12:57

Yep, I know the feeling well, John. Now I'm over all my surgery this is the ideal opportunity to get away for a while before the RT starts. I asked both my oncologist and my surgeon whether they had any issues with it before I booked, and they both gave me the green light, so we're good to go!

Cheers,

Chris

User

Posted 06 Dec 2018 at 14:57

I saw my vascular surgeon this morning. He's now reviewed the CT scan I had a couple of week ago of the area where I had the aneurysm filled with metal coils, and he told me that he's happy that it's now completely blocked by the coils and the blood that's clotted around them, so he's permanently signed me off!

One thing permanently ticked off the list, now .

Chris

User

Posted 06 Dec 2018 at 15:46

Great news - congratulations.

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

User

Posted 06 Dec 2018 at 18:48

Good news Chris.

User

Posted 21 Dec 2018 at 21:23

In the last few weeks the feeling of being "fuzzy-headed" has completely gone, and (of more concern) I'm seeing some life down below again (spontaneous erections). I don't know if that means that my body is becoming resistant to the effects of the bicalutamide or that it's still doing its job but the side-effects are wearing off. Either way it's a slight concern.

As previously reported, I'm having another PSA test on 4th Jan, and if that doesn't show a significant decline from last month's reading of 15, my oncologist is going to switch me from bicalutamide to triptorelin.

Oh well. I'm certainly not going to worry about it either way. Off on my Christmas hols tomorrow!

Cheers,

Chris

Edited by member 21 Dec 2018 at 21:24 | Reason: Not specified

User

Posted 07 Jan 2019 at 13:41

Just had the result of my latest PSA test: 13.3. That's down from 15.9 in mid November. It's moving the right way, but I strongly suspect the decline isn't rapid enough to prevent my oncologist from switching me from Bicalutimide to Triptorelin. Nothing to cause any concern if this is the case; the oncologist says that it's simply a case of individuals reacting to drugs in different ways.

I'm going to Egypt on Saturday for a very long-awaited holiday, during which the thought of cancer will not cross my mind! I get back home on Tuesday 29th Jan, and then start my RT with a planning session on Monday 4th Feb.

I really feel that I'm in the final phase of my treatment now, and I'm looking forward to getting it all over and done with.

Cheers,

Chris

User

Posted 07 Jan 2019 at 21:14

My oncologist phoned me this evening and, somewhat to my surprise, said that as long as my PSA continues to move downwards, he's happy to leave me on the bicalutamide, which I was pleased to hear. He's going to do another PSA test when I go for my RT planning session on 4th Feb.

Chris

User

Posted 31 Jan 2019 at 07:46

I have my RT planning session on Monday, with treatment starting a week later (11th Feb). I’m told that I’ll be having 30 fractions, so 6 weeks in all. I have to admit that I’m a little stressed about the RT; not so much the treatment, but more the potential for long-term side-effects and bowel/bladder issues.

I know the important thing is to get the PCa sorted, and this will hopefully be the final stage in what’s been a pretty horrendous year for me, but I love to travel, and long-term side-effects that kept me “house-bound” would be hard to take. As described in another thread, I had hoped to get SpaceOAR rectal spacer inserted to reduce the risk of bowel damage, but although my medical insurers approved it, the clock ran out in terms of finding somewhere to have it done, and I didn’t want to delay my RT.

Oh well, just have to hope that I’m not one of the people who end up with major side-effects. I’m not bothered in the slightest about ED-related stuff (that’s just not an important part of my life), but I do have a horror of incontinence.

Chris

User

Posted 31 Jan 2019 at 08:09

Good Morning Superman Chris

Seems On your own you managed to pass so many difficult times this RT treatment won't let you down.

Your a bionic man. You will be OK your OK Anyway.

Good luck with every thing mate.

D.R.

User

Posted 31 Jan 2019 at 08:39

Hi Chris, the planning session scans will allow your oncologist to plan the radiotherapy beams, they will also complete a risk score on various possible side effects.

My oncologist went through theses with me prior to going ahead.

I haven't got away free from any side effects but they haven't stopped me playing golf, other sports and travelling.

I did get very tired at the end of each week of radiotherapy, recovered energy over the weekend.

You have been through a lot, so here's to it going well and doing its job and still allows you to travel and do what you want to do.

Best wishes,

Ian

User

Posted 31 Jan 2019 at 13:37

Chris, as you know i finished my RT in September 18

I had IMRT supported by Ultrasound probe. At the planning appointment its a CT Scan of your prostate and surrounding area, plus you should get 3 permanent tattoos then, one on each hip and one on the pubic bone.

These are used to line up the RT machine accurately before each fraction. Once lined up your planning CT scan should then be overlaid with the live ultrasound image to enable pinpoint accuracy. Its amazing as the computer moves the treatment bed while you are on it in millimetres!

Once you are in the routine the days will pass quickly my friend! make the effort to strike up conversations with fellow patients, I did and found it helped a lot.

I expect your will be like mine, where you take a small mini enema to clear out the lower rectal passage so that it moves away from the treatment area, also drinking drills that fill your bladder and lift it away as well.

I had 20 fractions, as it was decided as I was Gleason 9 my cancer would be better treated by fewer fractions at a higher dose rate, but I think I am right in saying that you will get the same total dose as I did, just in smaller fractions. The amount of fractions to reach the total desired dose depends on individual state of your cancer

I suffered no serious ill effects from the RT, just inconvenience. i had diarrhoea for a week or 10 days and I still get a mucous discharge sometimes before emptying my bowels, its more like the sticky green stuff from your nose when you have a cold!

I wish you all the best. I had my post RT checkup on 8th November, where my PSA was 0.5. My next PSA test is on 4th March, where I hope its going to be 0.0 something. Not bad as I was PSA 38 last February.

Edited by member 31 Jan 2019 at 13:41 | Reason: added a bit!

User

Posted 31 Jan 2019 at 20:22

Thanks, Alan. I know I’m probably worrying unnecessarily; I should regard this as being hopefully the final stretch of what sometimes feels like a long and rather rocky road to recovery, so I ought to be feeling happy about it. It’s just the uncertainty that causes me a little disquiet, but I know that’s a position that many of us here are in.

I just want to get it over with now. It feels like an eternity since my initial diagnosis.

Chris

User

Posted 31 Jan 2019 at 21:24

Not all hospitals require men to do the enema, and not all men need it - it rather depends on your internal plumbing, but that is part of the purpose of the planning appointment. They take all the scan information, feed it into a computer which then writes the programme for your specific measurements / insides.

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

User

Posted 01 Feb 2019 at 07:52

Thanks, Lyn.

User

Posted 04 Feb 2019 at 16:17

Had my RT planning session today. It all went fine, although (as expected) the thing with the enema wasn't that much fun! I'm now the proud possessor of three tattoos - a cross on each hip and another above my pubic bone, to align the RT machine.

My actual RT starts next Monday. I'll be having 32 fractions, and my appointments are at 1145, which is a convenient time for beating the traffic, so that's all good.

I'll be seeing my consultant once a week during the RT. Had another PSA test today to act as a baseline for the RT.

So all as good as one might reasonably expect.

Chris

User

Posted 04 Feb 2019 at 16:28

Good stuff, Chris, but in my day a trio of discreet dots was good enough! 12 years later, I can't see them, so I imagine even crosses will face with time.

User

Posted 04 Feb 2019 at 16:37

Actually the crosses might be marker pen - I'm not sure what's marker and what's tattoo. I guess time will tell!

Chris

User

Posted 05 Feb 2019 at 12:37

Can anyone tell me whether it'll make any difference if I use the mini-enema at home before setting out for my appointment, rather than using it at the hospital immediately before my RT session? Ie will the extra hour cause any difference in the state of my bowel?

Thanks,

Chris

User

Posted 05 Feb 2019 at 13:07

If they have asked you to use it on arrival then that is what you need to do. Your planning scan was done with your bowel in a particular state of emptiness and they are trying to replicate that as closely as possible at each zapping.

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

User

Posted 05 Feb 2019 at 13:23

I was told the micro enema should be used less than an hour before radiotherapy.

I did tgis in the hospital as my journey was up to an hour.

User

Posted 05 Feb 2019 at 13:34

Thanks - I'll stick to "the rules" then!

Chris

User

Posted 07 Feb 2019 at 13:41

Latest PSA score from Monday: 13.0, so it's still moving in the right direction (it was 13.3 at the start of Jan), which is good news.

Chris

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.

Notification

Cheshire Chris's Treatment Thread

Join the online community now.