I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Bicalutamide and one off ADT injection (goserelin ?)

User
Posted 24 Sep 2022 at 08:17

Spoke with my Oncologist yesterday - follow up to get my PSA results after 11 weeks on Bicalutamide - gone down from 19.9 to 7 which he says is good. RT should start in about 4 weeks time and during that period Dr wants me to have a one-off ADT injection ( goserelin ?  he didn't say) whilst continuing with Bicalutamide. I've heard of short course of Bic before longer term ADT injection/implants but not what he is suggesting. 

Anyone else ? Side effects from Bic minimal really - less strength, sore nips and much worse IBS. What might I expect from a double whammy from Bic and an injection ? 

 

Gleason 7 (3+4) and ADT + RT my best/only option by the way. Thanks for any advice

 

 

 

User
Posted 24 Sep 2022 at 13:43
Unusual treatment plan - ask why he is recommending 2 years of bical rather than the more obvious and more common 2 years of injected HT. Side effects of injected HT are sometimes more tolerable than the side effects of bical. It may be to do with your other health conditions or it could just be that your onco is a bit stuck in his ways.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Oct 2022 at 20:33
Yes I hope you (and I) can get a padded version. Ipswich
User
Posted 29 Oct 2022 at 14:28

Supervisor said they'll find a way and I should get a call on Monday so I'll keep you updated 

Show Most Thanked Posts
User
Posted 24 Sep 2022 at 12:00

In your previous post you mentioned other health conditions (comorbidities is the Dr way of saying that) so I think they are trying to give you fairly minimal ADT rather than several years of total ADT.

The bical will have kept the cancer at bay and weakened it a little. During the RT the Dr wants the cancer as weak as possible so an injection of goserilin would shut down all testosterone. You would probably then come off the bical as it would not be adding anything.

I can't predict the side effects, the fact they have been ok on bical, implies they will be ok on goserilin. But I guess if the doc wants you on a more effective ADT then it may have more severe side effects.

I was on goserilin for two years, it wasn't too bad.

Dave

User
Posted 24 Sep 2022 at 12:52

Thank you for getting back. Yes, I have M.E. and Fibromyalgia (long standing - over 20 years). In fact, Dr. said he wants me to have the injected ADT ( as I said l, don't know which for sure yet) whilst I continue taking Bicalutamide. He also said he would then want me to continue with the Bicalutamide for two years after the RT - real 'belt and braces' stuff. Think he's doing his best to knock it on the head as well as possible but not sure how ADT that long term will affect my other conditions, quality of life... just have to wait and see, as we all have to 

User
Posted 24 Sep 2022 at 13:43
Unusual treatment plan - ask why he is recommending 2 years of bical rather than the more obvious and more common 2 years of injected HT. Side effects of injected HT are sometimes more tolerable than the side effects of bical. It may be to do with your other health conditions or it could just be that your onco is a bit stuck in his ways.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Sep 2022 at 22:26

Really your situation seems a bit similar with the exception I have Gleason 9 and post HIFU and have other health conditions (post polio which causes fatigue a bit like ME but also I start with less muscle and use wheelchair sometimes)

I have been on Bicalutimide for 6 weeks now and about to have first injection of Zoladex next week prior to radiation therapy - monthly to monitor and adjust to check how I cope given my conditions. The post radiotherapy Injections or Bicalutimide we will decide at the time depending on the radiotherapy outcome and PSA nadir but up to 2 years - we have taken a course of action that monitors my particular side effects and reaction and gives flexibility as and when / hence the use of monthly rather than 12 injections.

i am quite apprehensive about the Zoladex as so many write how bad it is. Whilst fore 6 weeks of Bicalutimide has had almost no side effects only very minor nipple itching my PSA dropped to from 6 to 1.8 after 5 weeks. 

so I think your path maybe similar given the Co morbidities.

i wonder how quick or severe the reported effects of the injection will be though!? 

User
Posted 28 Sep 2022 at 23:04

Hi Nomi's, thanks for getting back. Yes, looks like we do have some similarities - post polio does have similarities to M.E. What happened post HIFU. I'm concerned about the injection too (though unsure which drug it will be - should know more after an appointment on Friday). I have done more research and had a chat with radiologist at Hospital and one of the Prostate Cancer UK nurses. Think side effects of all the drugs are different as each individual - bit like natural menopause in women - some (like my wife) sail through with barely any effect and others suffer a lot. At this point, I'm thinking I just have to get on with it and look to the end goal. I'll keep posting on this thread and we can compare experiences.  Wishing you well :) 

 

 

User
Posted 29 Sep 2022 at 18:30

Yes would be good to keep in touch. ME obviously I has as part of it fatigue, as I have worked with quite a few with ME as a counselling psychologist, going back to when it wasn’t recognised again very similar to post polio,  I know it’s very variable but the fatigue is a central feature as well as variable sensitivity to medications and treatment plans. One size definitely doesn’t fit all and adding prostate cancer seems a complex array of approaches and treatments- sometimes it’s difficult to not feel alone and unsupported even by professionals and help lines as we have conditions outside their experience.

I’ve ask for a DEXA scan BEFORE I start as given my limited walking and a BMI of 20 I have never checked my osteoporotic state and that is something that to be managed with pre knowledge.

good luck with your appointment Friday 

User
Posted 30 Sep 2022 at 00:01

Thanks Nomi's - I'll keep in touch and update you on what was said at the appointment 

User
Posted 02 Oct 2022 at 20:00
Dr. has confirmed that I am to continue with Bicalutamide and have a one off implant of another ADT drug (didn't specify - said they all do the same job so choice will be down to budget and the cheapest).

Next question is I then had planning meeting for CT scan prior to treatment. One of the symptoms of my M.E. is v bad IBS so they don't want me to use micro enema before each session - said they're not sure how they'll get round this until after CT scan on Tuesday. Anyone else have IBS which meant no enema? What's the alternative - because I know they like an empty bowel/rectum and full bladder and the last thing I need long term is worse IBS etc

User
Posted 02 Oct 2022 at 21:02

I don't have IBS, also I only had 15 doses of EBRT as the bulk of the radiation was delivered HDR brachy.

However at the Christie, the advise was empty bowel (not to the extent of needing an enema) empty bladder. The empty bladder is now possible because the latest generation of RT machines is more accurate in where it delivers the dose, whether that applies to bowel as well as bladder I don't know?

 

Dave

User
Posted 02 Oct 2022 at 21:12

Thanks Dave. Brachy isn't an option for me. My IBS is unpredictable so I never know what will happen bowel-wise at any time of day (sorry TMI !) .... I'll just have to work through it and see what they suggest after the planning appointment

 

User
Posted 02 Oct 2022 at 21:36

Their are two options for lining your prostate up on the RT machine. External tattoos (three dots) or gold seeds in prostate.

With external tattoos if your prostate moves in relation to your skin, full/empty bowel/bladder then it won't be as well lined up, though an image before scan I think can compensate for this (I think this is what they did at Christie's). With gold seeds these show up clearly on pre treatment image so the beam is lined up on these rather than the external tattoos, which is much more reliable.

I have never heard of a real human having gold seeds, I think they are a myth in the prostate cancer community, but surely they would be the most appropriate thing for you. Try mentioning the idea before the planning scan.

Dave

User
Posted 02 Oct 2022 at 21:43

Yes tattoo is what they mentioned. Gold seeds sound very grand ....not sure I'm posh enough to warrant such luxury  😅

User
Posted 02 Oct 2022 at 22:59

Did he mention a space OAR ? This is a gel that is inserted between the prostate and rectum and pushes some space between them thus providing extra protection from radiation to the bowel. I cannot always be done but I thought modem standard practice as it reduces the risks to the bowel quite a lot.


It a short maybe 20 min procedure under short light anaesthetic done prior to the radiation therapy. The gel dissipates over time afterwards.

this is something they will try with me but might not work but that’s because of my polio affected anatomy but that shouldn’t apply to you.

 

 

 

 

User
Posted 02 Oct 2022 at 23:35

Yes I asked about the space oar a few appointments ago but they don't offer space oars at that hospital 

User
Posted 27 Oct 2022 at 17:38

Just to say that I had my ADT injection on Tuesday (leuprorelin) and following day (yesterday) which was first day of RT treatment, had awful diarrhoea - not sure if it's side effect of injection, something I ate which didn't agree with me or my stress related IBS.  Anyone else had similar ? 

* I also just posted new message re. difficulty RT Team are having in matching up location for RT between my CT scan image and what they see when I lay on RT machine table - abandoned twice and they're trying to find a way round it - more to do with how my bowel is and IBS problems - tricky 

User
Posted 28 Oct 2022 at 15:41
It doesn't sound a lot of fun for you Jed, I hope they work out a good way to cope.

I have to say pretty much everyone has problems getting their bowels and bladder optimal for each session - there was plenty of experience-sharing with other PC patients during the daily wait. It sounds as if things are magnified for you by your inability to use the normal laxative or mini-enema to achieve an empty bowel. I guess they will be feeling their way a bit, but hopefully they will work out the best approach for future sessions.

ADT didn't give me diarrhoea - but then I don't have IBS. However one of the effects of the RT was giving me the urge to go more often, presumably because the bowel lining had been made more sensitive.

User
Posted 28 Oct 2022 at 18:23
Thank you J-B....no, not much fun at all and frustrating because I just want to get on with it.

They don't want me to use the micro enema because my bowel is so sensitive already so it's all a bit trial and error. I'm not the first person to experience this I'm sure - team are great and said they will find a way.

Thanks for your good wishes

User
Posted 28 Oct 2022 at 18:26

Was talking to PCUK nurse today about difficulty of getting remotely comfortable on the RT scanner bed - I'm skinny anyway and that hard surface is very uncomfortable.  Makes it difficult to relax and stay in posiy. Nurse said some hospitals have cushions/cushioned support/s for less well upholstered 😉 people. Anyone else been offered these ? 

User
Posted 28 Oct 2022 at 20:09
Well I am very skinny so hopefully when the radiotherapy start date comes I hope I get the padded upmarket version.

I am only 2 weeks into Zoladex after 11 weeks of bicalutimide so will be interesting to see how the fatigue (which seems now the most noticeable side effect) progresses.

Where are you having your radiotherapy?

User
Posted 28 Oct 2022 at 20:33
Yes I hope you (and I) can get a padded version. Ipswich
User
Posted 29 Oct 2022 at 13:35

Have you had your prep CT scan for the RT yet ? I had to have two because they said my IBS was causing probs for them. Second go they said all OK. Was supposed to start RT on Weds - got on table and they couldn't match the CT scan image with what they could see so abandoned - tried again on Thursday - so probably going to have to have another CT scan. Just wondering with your own pre-existing conditions and ability to get onto CT Scan and/or RT table whether you've also had probs. They keep telling me to lie flat (even tried pulling my bum cheeks apart on Thursday! - to no avail) and I am - and still but no good. RT Supervisor showed me CT image and RT image and I see exactly what they mean - like trying to make a multi colour print but the registration is wrong so each colour is slightly out of sync 😕

User
Posted 29 Oct 2022 at 14:10

Sorry to hear it’s all being quite difficult- I am not there yet and have appointment mid November to discuss the RT schedule and CT etc.

we had a discussion and my oncologist examined me before and said it might be challenging but not impossible and was just a matter of working out the best options when planning.

despite all my other issues I can probably lie still and flat at my hips … but we will see / obviously quite concerning given your experience 

 

User
Posted 29 Oct 2022 at 14:28

Supervisor said they'll find a way and I should get a call on Monday so I'll keep you updated 

 
Forum Jump  
©2024 Prostate Cancer UK