Chemo Done :) What next?!

User

Posted 05 Feb 2024 at 21:34

Been Diagnosed with Prostate cancer back in June 2023! It took me a while to understand what just happened.

As a 47 yrs active, healthy guy, I was broken with the news, but kept very positive at all times.

Started Hormone Therapy Straight away as I had a PSA of 63.

Did Bone scan, MRi scan, Biopsy & a PET Scan

Bone Scan came clear

PET scan showed it had spread to the lymph nodes in the pelvis and shoulder

6 rounds of Chemo started on Oct 13 and finished on Jan 26th, every 3 weeks.

I do feel well and eat well, do my daily exercise, having a follow up on Feb 12. Current PSA levels 0.09, still have discomfort when sitting for a while and some in my shoulder. Just wonder if someone can let me know if that's normal as I do feel overall fine.

Obviously every Chemo Treatment left me drained with no energy, but never sick (nausea) for about 6/7 days but after that I was back to "normal" self :)

I Haven't spoken about it to anyone that is in the same our similar situation, hence being here :)

Thank you!!!

User

Posted 05 Feb 2024 at 21:34

Been Diagnosed with Prostate cancer back in June 2023! It took me a while to understand what just happened.

As a 47 yrs active, healthy guy, I was broken with the news, but kept very positive at all times.

Started Hormone Therapy Straight away as I had a PSA of 63.

Did Bone scan, MRi scan, Biopsy & a PET Scan

Bone Scan came clear

PET scan showed it had spread to the lymph nodes in the pelvis and shoulder

6 rounds of Chemo started on Oct 13 and finished on Jan 26th, every 3 weeks.

Obviously every Chemo Treatment left me drained with no energy, but never sick (nausea) for about 6/7 days but after that I was back to "normal" self :)

I Haven't spoken about it to anyone that is in the same our similar situation, hence being here :)

Thank you!!!

User

Posted 06 Feb 2024 at 16:35

I'm also in a similar position to you. Last year was the year of extreme treatments, 6 chemos, 6 RTs, HT injections but later I opted for orchidectomy to get that over with, but of course still suffer from the effects of ultra low testosterone. And that's really the crutch of it for me, instead of the cancer I have to deal with the lack of hormones which in itself is a big change to daily life.

I'm not so active, I try to get in daily walks but lately that's been few, but I work all through the day at my desk. Because I have no doubt I'm living on borrowed time now (I started with 990 PSA with mets in spine, and other bones, but currently down to 0.35) I do feel like I'm in a strange limbo. Some things I wanted to do like learn piano, or a programming language are no longer on my list, instead I just put all my energies into seeing my wife and daughter are doing well (daughter just about to do GCSEs) and planning financially for that.

Daily issues like hands cramping up if I don't move them, shoulder restricting movement through pain, struggling to do anything needing physical strength (getting up after crouching on the floor is a mission) is starting to take its toll on me mentally. My liver is giving me issues ever since it was badly injured from the antagonist drugs I was on last year (10 day hospital stay), and although it's meant to heal itself, recently the LFT readings have risen quite a lot again so not sure what's going on there. I've also put on like 5kg since start of last year.

I wish I lived closer to a Maggies to be able to talk to people more about it, but there are none in Kent unfortunately.

All the above is probably quite different to your experience and I wish you well now that the main treatment is behind you.

Rob

User

Posted 05 Feb 2024 at 22:57

I am not in the same situation as you. Hopefully I'm cured.

You asked 'What next?' Well if you had been diagnosed five years ago there would have been no attempt at cure only managing what you have with chemo and hormone therapy. You would have probably lasted five years but possibly up to twenty years. Lifelong HT or repeated chemo is not great for quality of life. In the last few years if a small number of mets are found (after radical treatment) they are now blasted with RT (SABRE), in the hope of curing the cancer.

A prostatectomy for you would almost certainly be pointless, but RT to the whole pelvis would probably kill all the cancer in the pelvis, at some cost to damage to bladder and bowels. You have a met in the shoulder, and one has to ask, did cancer cells go to other places all over your body and they just aren't showing up on scans yet. Your PSA was 63 that is not exceptionally high (for advanced cancer). At your next meeting with the oncologist I would want to hear their opinion on whether an attempt should be made at curing oligo-metastatic cancer.

The amount of treatment you may need and the side effects may be quite bad, and the small chance of a complete cure are all reasons to be pessimistic about this course of action, but I think it would be worth having the conversation.

Dave

User

Posted 06 Feb 2024 at 13:00

Hi .I notice Dave replied that he is cured unusual to definitively state he is cured as with all cancers the best word to use is in remission as it can return even after many years .You should not be too pessimistic about effecting a long lasting remission from PCA as these days there are many ,many good treatments, all be it with side effects , that can keep PCA well under control for years .You state your PSA is 0.09 should that be <0.09 the less than sign is very important .Even without the < your PSA is very low a good sign seeing you still have your prostate .Speak to your consultant and get his view on what he thinks is the best way forward ,if you read my profile you will see that I had a failed prostectomy in 2020 and had salvage RT and am on Enzalutimide as a first line treatment along with three monthly injection of Decapeptyl. My PSA dropped like a stone to undetectable within 4 weeks of starting the hormone treatment and there it has stayed undectable for almost 4 years now .

I have a face to face consultation this Thursday with my consultant first face to face for three years where they will look at my latest scans and decide the way forward its a full review of how successful my treatment has been .I am Gleason 4.3 N1 possibly M1a hence the Enzalutimide as first line treatment .I am considered in remission so you see it is possible to treat with a view to a 'cure' in your position .Most men who have prostate cancer will have cancer cells that have migrated elsewhere tiny little areas of cancer that may develop or not depending on many variables .Your own immune system will destroy some but not all and some may eventualy cause problems .But there have been big strides in the last few years that aim to make PCA fully treatable as a chronic condition ..Hopefully your treatment will continue to be sucessful I wish you well .

Edited by member 06 Feb 2024 at 20:29 | Reason: Not specified

User

Posted 06 Feb 2024 at 14:49

Hi Librajc,

I'm not at all pessimistic. Thank you for your message. I'm also on those hormone injections every 3 months. I've started the treatment same day the Urologist told me the news back in July, so there was no time wasting, only from my part it took too long for me to go and see my GP. I will have more info next week Monday.

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User

Posted 05 Feb 2024 at 22:57

I am not in the same situation as you. Hopefully I'm cured.

Dave

User

Posted 06 Feb 2024 at 13:00

Edited by member 06 Feb 2024 at 20:29 | Reason: Not specified

User

Posted 06 Feb 2024 at 14:49

Hi Librajc,

User

Posted 06 Feb 2024 at 16:35

I wish I lived closer to a Maggies to be able to talk to people more about it, but there are none in Kent unfortunately.

All the above is probably quite different to your experience and I wish you well now that the main treatment is behind you.

Rob

User

Posted 06 Feb 2024 at 17:34

Hi Rob,

Thank you so much for sharing your experience, really appreciated.

Being on Hormones since July has changed my life as well which is not ok, but if it's doing what it suppose to do, I'll be grateful.

I'm a very active person and overall I feel fine, just this discomfort on my perineum area, not sure why.

If you ever need to talk to someone let send me a message.

Wish you all the best!

User

Posted 06 Feb 2024 at 17:54

Hi Rob,

I know what you mean about getting up from the floor…nightmare at times.
I really don’t think there is enough support for those of us who have to go through this. But do women not go through the same sort of issues when they go through the menopause? Have we just go man-flu syndrome and don’t cope with the side-effects as well as women? I know my wife suffered hot flushes during the menopause but that was about it. But then some MEN seem to get off lightly with side-effects and others suffer really badly.

Before I retired I was a software engineer and specialised in fixing software, not mine I might add😊. That’s what I find so frustrating about this…I haven’t found a fix…..yet! But as with the software I’m not giving up!

Derek

Edited by member 06 Feb 2024 at 17:56 | Reason: Not specified

User

Posted 14 Mar 2024 at 22:00

Hi Balinha

Your diagnosis sounds very similar to mine. I was diagnosed in November ‘23 aged 45. It was similarly out of the blue. I was gleason 9 and it had metastasised to distant nodes. I am on a none curative path. I am on appalutamide and zoladex and I had radiotherapy last summer (only six sessions).
I am lucky enough to feel pretty good. I exercise every day like you, and am mentally in a good place. PSA is down to 0.05. I have had the odd ache and pain, but do wonder whether these have been psychosomatic.
My consultant has never mentioned chemo to me. I am not sure why, I will ask next time I see him. Feel free to DM me if there is anything in particular you want to ask about any aspect of this unfortunate curve ball.

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