Starting (continuing.....) SABR

AndyH143 6 days ago

6 replies
196 subscribers
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After three month on Relugolix, with very little side effects apart from some hot flushes mainly overnight. I started SABR this morning. First session of the 5 arranged over the next two weeks so really happy and relieved to start killing the little bastard.

Will come back after each of the further sessions as it may be useful to any others starting on this journey and have concerns about what lies ahead and are considering treatment options which I know was one of most difficult challenges so far.

Second Fraction of Gy (Grey) 7.5 yesterday. Travelling an hour up to Guildford for the treatment has been well organised by the Genesis Centre team which takes away stress and worry. The team there have been excellent keeping me informed and making sure the pre treatment prep is completed, (empty bowels and drinking two cups of water 20 mins before treatment) even if they continue to question my choice of music for the sessions!

Have continued with my regular diet although not having anything which could be described as 'spicy' and following doctors strict orders to stay away from Sprouts and Cabbage is being closely followed drinking at least 1 1/2 litres of water a day as recommended.

No issues so far apart from having to get up about 8 times a night to pee, which I think is what is leaving me tired in the early evening, getting out for an hour walk each day which I am going to continue. Still having hot flushes mainly in the evening and night but nothing much during the day.

Next session tomorrow so I will keep updating here if that helps anyone considering this pathway, and find my journey useful to hear?

Third SABR session finished yesterday, and given another set of mcmillan documentation which is always useful, a lot of discussion about fatigue so wondering when that will kick in? Nothing new to report this morning, still up at night about 8-10 times, trying to keep my fluid intake up during the day and stop drinking anything after about 7pm. Its Halloween weekend and the grand-kids have been looking forward to some spooky grandad time, didn't know how I would be feeling but think its all going to be OK. Scheduled post -treatment consultant appointment for 6 weeks after treatment finishes so set for the 18th December.

Next session on Monday..........

Millibob 6 days ago

Thanks Andy (AndyH143 )

Brilliant, thank you. Your fraction updates will be useful for anyone travelling the SABR path. I wish you well with the remaining 4 fractions.

Best wishes - Brian.

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Neil101 6 days ago

Hi AndyH143

I completed my SABR last Friday. The sessions were prompt and minimally invasive. Learning what the ‘prep’ involved beforehand was helpful: arrive one hour before the scheduled treatment, self-administer an enema, wait at least 15 minutes to make sure it has worked, then drink two cups of water and wait for the session.

Afterwards, I felt fine, though slightly tired each evening. The main side effects began after the fifth and final session: a constant urge for the loo, even when nothing was there, at both ends—very uncomfortable for the first seven days.

That said, it is a small price to pay for what is hopefully a curative treatment.

David2017 6 days ago in reply to Neil101

Hi Neil & Andy (AndyH143 & Neil101 ), thanks for posting about SABR which is relatively new to the NHS and still not fully available. Your experience during and after treatment will be good to compare against conventional RT. I am intrigued to know what dose is being administered. For anyone reading this, SABR is also used on mets that develop elsewhere in the body, I had it on my sternum. Fatigue kicked in after treatment, but was nothing like the original 37 RT sessions fatigue.

Just imagine if everyone now who receives 20 or even 37 sessions of RT only needs 5 SABR treatments, what that will do to waiting times/anxiety/recovery. This is progress.

Best wishes, David

Please remember that I am not medically trained and the above are my personal views.

Lemsip 6 days ago

Hi Andy

I did SABR a couple of months back and I kind of posted a summary at the end of it. If you have got the energy to just journal how you feel each day, whether physically or emotionally, I'm sure that will help people a lot. For all we know, it might help you too! I wish I had done it myself.

What I did do was this: <a href="">community.macmillan.org.uk/.../sabr-side-effects-report">SABR side effects report</a>

Good luck with your sessions and may the intruder in your coal bunker quietly cease to exist.

Be More Moira

angusP2 3 hours ago in reply to Lemsip

Hello,

As it happens, I am having SABR again (the third time in 3 years) as treatment for bone metastases, starting later today. This time I have 5 sessions scheduled. The areas that were "zapped" by the previous SABR sessions have not returned, there are now 2 new small areas needing treatment. I didn't suffer any noticeable side effects after the previous rounds of SABR treatment, so I hope there won't be any now.

I had a prostatectomy 7 years ago, followed by 6 months of hormone therapy and six weeks (33 fractions) of conventional radiotherapy. I was doing pretty well for more than 2 years, and then things (cancer) started to reappear. as well as previous SABR treatments, I have been back on hormone therapy for the last 2.5 years (Bicalutamide tablets). I don't think SABR was available as a primary treatment when I was first diagnosed.

Anyway, good luck to me, and good luck to everyone!

Angus-not-my-real-name

Lemsip 2 hours ago in reply to angusP2

Hey Angus, it sounds like you have been going through it. But it also seems as if SABR is succeeding where other ones haven't quite.

It's good to hear that you haven't really had any side effects from SABR. But then, if it hasn't been aimed at the region below the bladder, then it would not have the effects that it has when it is aimed there.

I'd like to wish you the very best of luck for today and for the next 30 years.

LemSip not my real name

Be More Moira

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