How long on Bicatulamide before the effects kick in?

Hi,

You are usually on Bicalutamide for about a month - maybe less and about half way through that time you will probably start your Prostap injections.  Probably the first one will last a month and then if there are no drastic side effects which indicate that another type should be tried the future injections will last 3 months.  It all depends on how your consultant works.  You will not get the fatigue straight away it will come probably after the first 3 months.  Every one is different.  You should stay on ADT for at least 6 months before starting radiotherapy as the ADT not only lowers your PSA but also weakens the cancer cells and makes the Radiotherapy more potent. 

Any of the side effects such as fatigue, weight gain, and mood swings can be helped by carrying on exercising as normal all the way through.  I continued to go to the gym at least 3 times a week all the way through my treatment and carried on doing everything I normally would - OK I may have needed a nap at lunchtime some times or fall asleep in the evening in front of the TV but I am sure this all helped and I hardly noticed any of the side effects.  One bonus for me was that my hair started growing back whilst I was on HT so wish I could have stayed on it longer.  I have only heard of one other man this happened to and we were both on Prostap.  I didn't put on any weight though I did notice a pocket of flesh starting to appear around my midriff.  I did have hot flushes but they were really not that bad and certainly not as bad as those my wife has been getting for the last 10 years.  For the result they were well worth putting up with.  If you get any severe side effects you cannot live with then tell your Doc as medication can help and there is some medication out there to help.

What is your diagnois - PSA, Gleeson Score etc?  Have you been told how long in total you will be on Hormone Therapy (HT)?  Nowadays depending on the Gleeson score and possible spread of the cancer it can be anything from 9 moths to 2 years.  Any effects you get from the HT will stop gradually after you come off the HT.  I was diagnosed 5 years ago with a PSA of 12.9 Gleason 7 (3+4) and T2b N0 M0 though T3 disease could not be ruled out because at MRI the tumour could be seen to be pushing against the wall of the gland into the rectum so they couldn't guarantee that cancer cells had not broken out into the immediate surrounding area.  I had 9 months of HT and started radiotherapy at the 6 month point using fiducial markers (3 gold seeds about the size of a grain of rice inserted into the prostate) to help target the radiotberapy beams.  I had 4 weeks of radiotherapy and ever since my PSA has been undetectable so to all intents and purposes a cure.

Good Luck and let us know how you get on.

Many thanks Freefaller, great information, helps a lot!

I know ADT can be horrendous for some, but good to know that it can be tolerable for others. I was particularly concerned about the fatigue since I have CFS, but in one way I'm used to fatigue so it may not be that bad. Like you, I take exercise, which has helped with the CFS, so I'll continue that. My bald patch will be delighted to know it may yet sprout hair!

I was diagnosed in 2012, PSA 8.5 and went onto watchful waiting. This year my PSA had risen to 16.4 after bobbing about between 12 and 15, Gleeson 3+3, T3b and had to bite the bullet. Surgery was out since the last time I had surgery I almost died from a post op infection.

I looked at Proton Beam, SABR, Cryo and all the other treatments, but most were not suitable due to the position of the tumour or expense, so settled on the blunt instrument of zapping the prostate and seminal vesicles with gamma rays, but possibly sparing the lymph node. I think they are doing the whole prostate, so I'm assuming that is why nobody has mentioned gold seeds?

The consultant has me down for 3 years post RT hormone therapy, which seems a bit long to me but may be because the tumour is extra capsular and they are worried about a return.

Did you get any effects from the RT on your rectum/bowel habits?

Delighted you have undetectable PSA, long may it continue! I'd better get gym membership organised

All the best,

Jonno

Hi Jonno

So long as you follow,  religiously, the diet sheet they should give you ( ask if they dont), in my experience, you shouldn't get any bowel issues. The only time I had a problem was because I didn't!!!!

Regards

Stuart

Yes I looked at a few other treatments as I was wary of getting collateral damage to the surrounding area as I already had bowel problems and this is why I opted for the gold seeds as they can pinpoint the radiotherapy more accurately.  I had no problems at all during the 4 week radiotherapy and I was seeing men having quite bad bladder and bowel problems about half way through.  I had one night where I had to get up to urinate about 30 times but that was all.  Unfortunately, about 4 months after the radiotherapy I had to have a sigmoidoscopy - nothing to do with prostate or treatment.  It was great being able to see the slightly inflamed area on the rectum wall from the radiotherapy - it really didn't look bad at all.  However that very evening I did have some problems which continued for a few months maybe about 6 and I think this was just the double whammy of the radiotherapy and then the sigmoidoscopy.  I also had biopsies done on polyps found and some polyps removed at a later date so doubt that helped.   It was mainly a lot of flatulence and numerous urgent bowel movements. I was prescribed 1 immodium every morning and fybogel which stopped me having numerous bowel movements and associated flatulence.  I have to say I am glad I went to our Maggies Cancer Centre and joined the "Walnut Club" as it was good to hear that I really didn't have a bad time at all and some poor men have far worse bowel and bladder problems than I did.

Cheers, Stuart, I'll look out for it. Good luck with your fitness. Let us know how you get on.

Best,

Jonno

Thanks again, I'll see if I can get the gold seeds, or at least have the discussion.

I'm looking at getting a SpaceOAR installed between the prostate and the bowel, but I'm told that they are currently only doing T2s. A friend in the US had this and has had no bowel problems whatsoever apart from a little incontinence. I might stay on ADT until I can get this done, before having RT.

Have you heard of IP6 (Inositol Hexaphosphate) and Modified Citrus Pectin? The same friend opted to use these two rather than go on extended ADT and it seems to be keeping the cancer at bay. There is a quite a bit of positive research available, but both these substances are quite expensive.

Once more, it's good to hear of your experiences and I thank you for taking the time to respond.

Best,

Jonno

For some reason they said SpaceOAR was not an option for me but I can't remember why - maybe it was because the tumour was already bulging into the rectum but as I say can't remember.  I had to make a private appointment with a rad. onc. at a hospital some 3 hours distant to get the gold seeds as not all places offer either this or Space OAR but once I had seen the consultant rad.onc he put forward a special case for me to have my treatment with him on the NHS because of my pre existing bowel and bladder problems or Co-morbidities as they are cheerfully called.

Gold seeds were standard practice for all PCa RT patients at the treatment centre I attended.

I'll see what the oncologist says re the SpaceOAR - seems like common sense to me, but I can see there might be problems if there is little or no space for the gel. Having said that, isn't one of the goals of ADT to shrink both prostate and tumour? I suppose that ultimately any treatment has to be specific to the individual and their tumour position.

Always love an expression that includes the word 'morbid'. Confidence inspiring!

Thanks, Seamus, I'll check with my oncologist. Should be fine as long as they're not on a cost cutting exercise due to the pandemic!