H`mm I have got several worries about HT this now

Phil, I'm so sorry to hear your continuing story of your struggles with this terrible disease of prostate cancer along with all your other health problems.

Having read again through your previous posts, there's a couple of points I'm not clear about.

One is your use of the term "contemporary methods of delivering ADT" .  and I haven't a clue what this means.   I see that you have started on ADT, i.e. Bicalutamide which is a tablet.  

The phrase could refer to the ADT agent being delivered in a different way e.g. an injection, but the effects/side effects will remain the same.  It could mean a different ADT drug, but again side effects will be similar because it has the same action.  It could mean a different dose and or period for which you take it.

There are other forms of HT which are NOT Androgen Depriving, butbthey still have risks, possibly worse.

I believe, that you asked for a review of your treatment and it appeared to me that your concerns about your cardiac condition were recognised and they reduced the time over which you would receive the HT.  

Now, I'm not sure what you mean by "alternative" treatment.  I'm guessing you mean different forms of medical treatment rather than the usual meaning of this i.e. things like Homeopathy, Reflexology, Herbalism.etc none of whom will  be able to treat cancer.  There are only so many forms of medical treatment available in this country and not all of them will be suitable for you.

The reality is, I'm afraid that you don't have many options. and you are struggling with it.

My suggestion is one I imagine you're going to hate.  Prostate cancer has psychological as well as physical consequences and these shouldn't be thought lesser than the physical.  You are, it seems, suffering these.  You are struggling.  

My suggestion is that you stop struggling and accept the treatment you're being offered is d

Sorry there are glitches in this system which prevented me continuing to write.

My suggestion is that you stop struggling and accept that the treatment you're being offered is, in terms of feasability, probably the best that;s available.

There are risks associated with it, there are risks with all treatments.

It appears your worst risk is your self and your fears.  It appears that you have little resilence and little confidence that you can cope with things.  You may feel youre on your own and that nobody understands or is listening to you.  Quite common in cancer sufferers.

Although other people who have responded to you, with the best of intentions, seem to have only encouraged you to keep struggling.

Easy to say, stop struggling.  In which case my further suggestion is that you join a prostate cancer support group and/or seek counselling.to help you cope psychologically with your situation.

Support groups/free counselling for prostate cancer sufferers should be available near you, at a Maggies centre or another cancer charity.

Phone the Macmillan helpline on 0808 808 00 00 or  go to Maggies centres to find out.

Good luck

Thanks for the suggestions and wise words , yes I`am struggling in a lot of ways, but I`am trying to get out there a bit more so to speak by trying to go back and play in a Band I played in on Wednesdays , I`am a " what if " person and for me there are to many what if`s about treatment plans,

I think the more contemporary way of ADT ? may be would require ? an additional medication , I will look into that .

Phil

How long are you taking the bicalutamide?  Most people are only on this for at most a month. After a week to a fortnight on the tablets you then start hormone injections and then stop the bicalutamide - is your treatment different?  Unfortunately with cancer all treatments have side effects and most treatments for prostate cancer have similar side effects.  Remember you may not get any of the side effects you may get a few you may get all of them but only to a low degree.  What you do need is treatment for your cancer.  Have you called the prostate cancer UK helpline and spoken to their specialist prostate cancer nurses?  The number is 08000748383.  The lines are open Monday to Friday 9am to 6pm and Wednesday from 9am to 8pm. At the beginning of my journey it was a good place to discuss things and ask about available treatments.  Also if you can get to your nearest Maggies Centre and find out when their prostate cancer group meets and get to some meetings to talk to other sufferers and to the professionals who work there.

Take care

Des

Thanks Des , my treatment has been modified slightly , I take the bicalutamide for 7 days then go back for an injection, but I keep getting letters that confuse me, the HT is for 12 months , { but should have been more } the letter then goes on to say   2 months of HT prior to RT  and 9 months would be given concurrently with your first month of RT and then on its own after RT has been finished,

Well I find hospitals do their best to confuse you.  It is always better if you can speak to one person but that rarely happens.  Also it can take a long time for letters to be typed up - our hospital has a night shift of part time typists and clerks who come in and type up letters and do filing.  So sometimes the date on the letter is the date typed but that could be an old letter written a week or more ago before something changed in the plan. 

The plan you outline above sounds about right for your staging and your concerns.  People are on bicalutamide for a month or less.  There was a huge mix up with mine and i ended up having it just after the injection - which instead of being one month was 3 - What should have happened was bicalutamide for a week before1 month injection and then for 10 days or so afterwards and the next injection would have been a 3 month one,  The bicalutamide stops tumour flare as the tumour can put on a growth spurt when the HT is first given so bicalutamide is given to stop that.  I liken it to letting a plant dry out as it will put on a few blooms once it is under stress.

Hope it all goes well.

Do you know what injection you will be given?  I had Prostap 3 - the 3 just means 3 monthly injection and was hardly aware of the side effects - even the hot flushes.  I get worse when my heart plays up. or I get a dizzy spell from my neck injuries. Again if you get side effects it is good to talk to other people who have been through the same and can give you tips so a visit to a "Walnut Club" or other cancer self help group would give you access to all these tips and help.

All the best

Des

Hello Des and thank you , I do not know what type of injection but it will be on the 16th , I started Bicalutamide  on Monday the 7th ,  now you say " I get worse when my heart plays up " that's what I`am worried about having had to get over medications affecting my heart 3 times , I got that bad one on Flecanide that I was rushed into hospital for emergency treatment,

Please describe the symptoms you get with your heart as I have also had Arthymias of the heart Brady Cardia   and 2 episodes of AF since the 1980`s , I read this medication Bicalutamide  can cause most or all of the above , the Consultant phoned today and was most great full for it , he said I can go with just RT if I wanted , but have gone with his recommendations , I still know this drug is going to cause me big problems

I think you have mis-understood me.  The side effects from the HT are no where near as bad as the side effects and symptoms I get from my AF - which I didn't have at the time of my HT.  I am trying to tell you that there are far worse things than HT and the side effects. You have to remember that many people go through longer courses of HT than either you or I and when their courses are completed they do not have long term side effects.  Again, some people get almost no side effects, some get a few and to a lesser degree and a few unlucky ones get  a few really bad ones and some get all of them to a greater or lesser degree.  There is no way of knowing what you will get but if you keep stressing yourself out you are going to make things worse for yourself.   I did not get any AF symptoms while on HT - NOT ONCE! 

I have persistent AF that is Atrial Fibrillation all the time.  No medication works for long enough for me and after about 3 to 4 weeks actually makes me feel worse.  I get out of breath even when lying down - indeed that is when the AF started I was gasping for breath in the night when laying in bed.  I eventually had a cardioversion which put me back into Normal sinus rhythm for nearly a year - this is not a cure but for me lasted just short of a year and again I knew it was back because I was gasping for breath in the night .  I then had another cardioversion which is still working and am on the list to have an ablation which should be a cure though some 20% of people who have an ablation find they need another one and I think of those 20% about 5% need a third before the AF is cured.  Though I believe there is no guarantee at all - is there ever in life?

Whatever I go through I remember that a lot of my friends died before they even got to 60 - some killed and some from illness so I always think all those people would far rather be here with my knee, back and neck pain and go through prostate cancer than be where they are.  What ever I go through I think it is better than the alternative and make the most of life and take what comes. Worry does not necessarily change tomorrow but it does take away the enjoyment of today.

Phil,

I started hormone therapy about a month ago, I haven't noticed many side effects. In fact some are comforting in that it's doing it's job I.e suppressing testosterone starving the cancer of it's energy.

I had surgery at the start of May and am now on chemo.  For the surgery I needed to know each detail, now I prepare questions for each consultant/nurse specialist then once given their advise and challenged why I try to accept their opinion,  they have the experience.  It's not always easy but worrying too much does take away from today. Life becomes about cancer not living.  Looking at side effects of medication I was looking for the side effect rather than experiencing something and linking. I'm 50 so am bound to have a few ailments unrelated to the cancer or meds.

Stay strong, do what is right for you. Sometimes things need to be parked for a while to ensure we stay strong and don't cause issues by unnecessary worrying.

John

Thank you John and every one for the kind words,  help, and support / advice , ? what do you mean by " Sometimes things need to be parked for a while " ? rest or .

The Consultants have also been very good in listening to my concerns about Bicalutamide  HT, but in their first  Team asesment for me, they did take my other health issues in consideration as regards the length of HT, previously over the last 10 years I have had 3 drugs which have had a bad effect on my heart , as the drug mentioned above can do as well.

I have several other health problems, I go on the 16th for an injection which I think as mentioned before stops ? flare, yesterday I felt really bad and the symptoms were much the same as the last bad episode of the heart problem I had while on Flecanide.

It seems I start RT a month sooner than the ? normal 3 months of HT.

Thanks again , I  really need to get stuck into  the reading of the what to do`s and so on , I have tried to start back in the band again , every Wednesday , felyt ok on the day but like I said it`s a day to day thing with me and Sleep is a major problem

Phil