Has anyone used SpaceOAR gel?

By about four weeks after SpaceOAR insertion the discomfort that I had was gone. All I have now is the stinging sensation when I pee, a standard radiotherapy side effect apparently, which I will say is helped in my case by a small daily intake of cranberry juice. I got some pure juice and I dilute it with water; it’s quite sharp to say the least but at least it doesn’t have a load of added artificial sweeteners like the “juice drinks” that are more commonly available do. I now know you can get concentrated capsules of cranberry from health food stores, but I haven’t ventured down that road yet. The “mucus” thing seems to have mostly stopped now too.

I’ve now had one reflexology and one acupuncture session courtesy of http://www.pennybrohn.org.uk/ and they both seems to help. Really looking forward to the next session in each case. Also had a fitness assessment yesterday prior to commencing a twelve week long “Exercise Medicine” program.

Now 23/37 on the radiotherapy so we are counting down now!

Edited by member 07 Apr 2019 at 11:00  | Reason: Not specified

Not having heard of SpaceOAR until coming across this thread, I went off to read the blurb on it, and I'm very interested in having it done. Can anyone tell me what it cost them?

I also asked my MacMillan nurse about it today, and she knew of it and that people had had it done privately. She said it has been known to slip out of place occasionally. 

My insurer would have been happy to pay for it too, had I been able to find somewhere to have it done. Unfortunately I wasn't able to do so in the time available to me. I seem to recall that I was told that the cost (to my insurers) would have been around £3000, taking into account the cost of the operating theatre, anaesthetist, and so on.

Interestingly, my oncologist at the Clatterbridge Cancer Center told me that they were planning to trial its use there later this year, which would suggest that it might then be available to NHS patients.

Cheers,

Chris

Edited by member 07 Apr 2019 at 11:07  | Reason: Not specified

I now have just 4 radiotherapy sessions left (out of 37). As I mentioned previously, I had some discomfort at first after the SpaceOAR insertion, but that subsided after about four weeks and has not returned. Comparing notes with one fellow patient, same procedure by the same surgeon, same he experienced zero discomfort from the SpaceOAR. Radiographers and other staff at the centre where I am being treated have expressed surprise at my mention of the said discomfort, so I get the impression it isn’t usual. And don't get me wrong, it was only ever mild discomfort and certainly wouldn’t change my decision if I had to make it again.

If my mild level of side effects is anything to go by then it is doing a great job. But I don’t have another “me” to act as a control subject for comparison so it's impossible to know how things would have been without it.

I’ve now had 3 exercise sessions under the supervision of the physiotherapists and as someone who would never, ever, have set foot in a gym I’m really enjoying it. It’s all about building muscle. The only other people there are in the same or a similar boat so it’s all very positive and we can laugh with each other as we go through, or see each other go through, the same moments of discovering muscles we never knew we had.

Re: exercise; ideally one would exercise immediately before radiotherapy apparently so as to increase blood flow. However, this is not very practical for us chaps with PCa due to the need to arrive on the table with a full bladder at ‘lighting up time’!

In my reading of research papers, 16mm spacing is mentioned quite a bit. One of the failure modes is where it ends up non-symmetrical giving a much smaller spacing on one side, but even spacings below half this still give most of the benefit.

Regarding exercise, there seems to be quite a bit of evidence suggesting this slows most cancer growths (not just PCa), and in some cases, more effectively than any drugs can. My consultant is a big believer in this, and is part of a group to get their patients cycling. That was the Prostate Peddlers event today which I posted about, and I've just come back from. It was great to be cycling in Hertfordshire today with a load of PCa patients, and several consultants, a trainer, and their families. I am a cyclist anyway, but there were bikes available to borrow, including electric bikes, and some simple cycle routes, for those who don't have a bike.

Consultant said it's not suitable for my case, where, because it's probably locally advanced, they will be deliberately radiating the whole pelvis including the lymph nodes around the bowel/rectum in case they contain undetectable micro mets, and they also don't want a spacer possibly moving micro mets away from the prostate.

Had blood taken for PSA (+liver function and testosterone) on 24th April. Saw the onco for the results yesterday (03/5). My previous PSA before RT started was 5.58. It is now 0.66 ! Apparently he was expecting maybe a 2 or a 3, so this is really excellent news 😎

LFT and testosterone still “normal” so just 19 more doses of Bicalutamide then I can stop that as well!

Thanks Jonathan! I must say I felt more positive once treatment had started and at the start of each new stage. You can’t reach the end of your treatment until you start it. I didn’t realise, until it happened, that getting to halfway in e.g. radiotherapy and starting to count down, not up, would make a difference too. 

On which note, I have now completed HT. Took my last Bicalutamide tablet on 23/5/19.

Now that you have started treatment Jonathan the end of treatment is getting closer every single day. You will find a lot of support here on the forum at every stage.

Edited by member 22 Sep 2019 at 14:22  | Reason: Not specified