Thursday 1 March 2018

Barrys prostate cancer story continues


Is anyone really interested. I doubt it but I m writing this for myself.
Anyway re Barrys prostate cancer treatment.


When he got there yesterday, they said they could not do the radiotherapy straight away as planned. Because of two reasons.


One because he had Brachytherapy, originally, which is radioactive beads inserted in his prostate..


And they are now unsure with those in place - they never come out, in for life unless you have your prostate removed - that they can do radiotherapy?


Even though the noduals are not in the prostate but in the abdomen they have to be careful that the radiotherapy goes no where near those.


So it has to be targeted very precisely. And they are not sure the equipment they have in our only hospital in Cornwall can handle that?


They are going to consult with all teams involved and if not he either cannot have Radiotherapy - the best option for his type of cancer, or he is going to have to have it outside of Cornwall.


This could be problematic as once it starts it is every day for some weeks, and the nearest hospital with other equipment is a 2.5 hour drive away and truly even Barry could not drive that far and back every day while having this. He would have to stay somewhere, and we just do not have the money for this.


And it could be they can't do it there, so it could be London.
That is a 6 hour drive.
But that could be a lot better as at least my sister lives there and could put him up.


They are consulting the various teams about this and that will take a few f weeks before we know.


But the other reason is that they are worried that Barry is on ARVs.


That according to their - outdated I feel - information, on some ARVs, but also those with HIV cannot have radiotherapy?


Anyone know anything abut this?


BUT!!!!! I know that this only applied to the older drugs and just due to some research that was not proved and that you cannot have radiotherapy when HIV+ has long been disproved??


I know because we had this fight before.


They said the same thing a few years ago when we fought to get him Brachytherapy https://www.macmillan.org.uk/information-and-support/treating/radiotherapy/internal-radiotherapy-explained/brachytherapy.html


The same happened then!!!!


They said he could not have this. Yet it was then the best treatment for how his cancer was then. But we had to fight for it, because the local team thought it was not possible for those HIV+ and on ARVs.


I had to fight for him to get this.


I had to find more up to date research and post it to them, get my niece who is a consultant in London to write to them, and get them to consult with a London HIV specialist.


I am very upset we are going thought this yet again!!!


They did say that they do now know now that the ban on Radiotherapy only applied to much older drugs.
BUT!!


But Barry is now on Odefsey. That apparently they had never heard of???
And have no information re that and any type of radiotherapy!!


I am pretty sure that there is no problem with that!!


As it s exactly the same as Complera/Eviplera. Except it contains the newer Tenofovir and that is fine with Radotherapy.


And Odefsey the drug Rilpivirine is in derivation for the same family as the Efavirenz in Atripla he was on when he had the Brachytherapy.


I guess I should be pleased that if they do not know they are doing their research?


But all this will take time. Were told could be as much as 8 weeks!!!




And at least, unlike last time, they are researching it, rather than just telling us as they did 5 years ago or so, that Barry just had to have his prostate removed and be on hormones for the rest of his life.


But honestly I feel they should know this stuff.
Before he attended his appointment??


They say they have hardly ever treated anyone for this cancer here that also has HIV and is on ARVs???


I find that hard to believe??


________________________________________

So it is now a waiting game for us.


Could now be many weeks before he starts any other treatment, except for hormone treatment, if he does


And every week counts. ...................while they consult and educate themselves.


Otherwise his only option is to be on hormone treatment for the rest of his life, like his dad and his brother was.


His dad died of it. So did his brother not long ago . It does not work forever.


And hormone treatment is not good. Especially if for the rest of your life


It is true that when originally diagnosed, if he had agreed then to have his prostate out, this may not have been now occurring.


But It could have, as his cancer is very aggressive and so could have already been outside the prostate but too small then to small to detect,
And the scans he has had recently did not exist then.


But ..............


He would have been lucky to escape urinary incontinence, like his brother and his dad.
But more of a concern for him, almost certain impotence.


Maybe we are shallow. But have a good sex life and it is very important to us both.


But I would have forgone this if that was the only option.


However Barry said he would rather not have it and would take his chances. Have have a few years, with me and some normality, and then die.


And actually if you knew Barry?? He is not at all an emotional person ( I am but he is NOT and not at all)


He s not given to saying anything he does not truly mean.


He meant it.
But due to me basically, we found he could have Brachytherapy and not then prostate removal and then hormones.


It was not a hard procedure to have and it gave him ( us) a few years
It is too late now for a Prostatectomy as it has spread.


But hormone therapy as he is on now also can also make you impotent - more than 85% + and grow breasts, and feel ill and emotional etc.


He has some of that - breasts expanding, irritability and feels unwell - And he has shingles right now that we have no idea if related.


And he is so hating it and so hope this is only until he can have Radiotherapy.


I will fight for him to get what he feels he needs.

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