What would you choose next and why?

Hello Mr U, having read your profile, I can fully understand your dilemma. Unfortunately, I don’t have enough medical knowledge to tell you which of the 3 options I would choose.

however , I can tell you what I would do ( rather than choose)if it were my husband:

I would do as much research as possible about the radiotherapy and chemotherapy. I would also look for other potential treatments out there. Any decision must be as fully informed as possible. 

I think your ‘wait and see’ option is, probably, an acceptance that you might be ready to enter the palliative care phase - ie being kept as comfortable and well as possible for as long as possible?. This might be a trade off - shorter term good quality of life without the side effects of treatment but, potentially,  a shorter life span than you would hope for yourself.

as you have inherited gene mutations, I would  also make sure all my family members ( male and female) know that they can also get their genetic risks checked.

I’m really sorry to not be of much use to you! Please note that these are things I would do and not what I think you should choose.  But,  I just wanted you to know that I am sorry to hear of your struggles and do care about your next steps on this rocky journey. Your posts are often an inspiration to me and others and I really hope you choose the option which works out best for you.

xxx

Hello Mr U (Mr U) 

• A - first - Ra223 (Radium Therapy) purely and simply because if I had already had Chemotherapy and it hadn't gone well for me. I'd want to keep it as a back up.
• B - second - Chemotherapy IF it's needed after 6 months of Ra223.

• From my experience, you can have the treatments in that order.
• C - I would only pick this option if I had the mental capacity to accept whatever comes and my family fully understood why I chose this option.

Something else to consider is the effect that treatment A will have on you, your Darling and your family as I suspect it will involve a certain amount of travelling (Brighton?) and also I think in the week after the treatment you have to follow some simple radiation rules at home. At the end of the day though your team are looking after you so if I were you I would go for it.

Best wishes - Brian.

Thank for your reply WW.

My family have been made aware of the gene issue and some of them are already in the process of finding out their DNA profiles. Of course this is a personal choice and some are not interested — which is absolutely fine.

Ive got a MRI reporting soon which may swing the choice, but the choices won’t change.

“Another” treatment is worth checking out, and perhaps better than all the others. Certainly worth considering.

I wish I knew how much time I’ve got left, it would make my choice that much easier.

Bye for now, Mr U 

Thank you Millibob (Brian).

There’s never been a greater need for hindsight or looking on the crystal ball.

I feel the radium is a week treatment and the chemo will only start off week and grow if my body lets it. The wait and see is as you say, for the moment when you want to disassociate from being pushed and pulled and need a rest.

I do feel like there’s not enough information in my pocket yet. Perhaps there never will be.

And that’s the rub. Luckily I’m not choosing for a week or two. But the more we talk about it the more satisfied I’ll be with the data allowing me a “best solution.

Roll on the day when we have all the data.

Mr U over and out.

Hello Mr U

my husband had genetic counselling and it is not so cut and dried as we thought it would be. Thankfully they did not find any of the known cancer-causing genes but they warned us there may be unknown cancer- causing genes not yet discovered. Also, I got very edgy towards results day. I realised that my beautiful daughters might then be face with a choice of whether or not to have double mastectomies. That terrified me! I knew it would be such a difficult decision for them.

i really hope others will come along with their own thoughts and experiences to help you make the right decision for yourself. I think the important thing is that you do have options and you have the final say in what option you choose. 

I hate making decisions and really understand how difficult this could be. But - I’m sure I speak for everybody here in saying that we are all behind you and hoping for the very best of outcomes for you.

A question that occurred to me was to ask if the Ra223 was going to be gentler on your body than the chemo.

I'm pretty sure that you have an answer to that, but to me that would be an enormous question.

If there is an acceptable treatment, I suspect that you will use it.

Whatever your choice, I wish you well, knowing that you wish the rest of us the same.

I remember that you had a bad reaction to chemotherapy, so if this was my husband I think I would be thinking that radium 223 might be more focused and hopefully not so brutal as chemo.  Also I read that radium 223 is more focused on bone pain.  You have given me such great support and advice over the last 6 months, so I am sure that you will make the right decision xx

Mr U (Mr U ), certainly not an easy choice but one I suspect isn’t too far away for a few of us.  This is so personal, I hesitated to reply, but you did ask.

Initially, the choice seems quite binary.  Do I fight or accept the position.  Neither is right or wrong but about your feeling at the time.  I personally would currently fight but I can envisage a point where I would say enough is enough I want quality vs quantity.

Assuming you opt for treatment I would probably chat with my oncologist to see if either route was seen as ‘better’ from a quantity point of view or if the order made any difference.  If not, then I would opt for A and give it a go (as I also had such a bad Docetaxel experience).

I tend to stay away from Google for treatments which might be my next options, so know almost nothing about Ra223.  I have confidence in my team and do listen to their advice.  I know you will make a good decision for you. 

Thank you for your reply.

I initially thought Ra-223 was a cop-out but I’m becoming to understand that it’s ideal for my bone only mets. However it’s not going to help much. I’m still very confused.

As for the 50% chemo, I am struggling to see how I’m not strong enough. I have just sent an email to my oncology team about how that particular comment was made, not strong enough how? is that because of my bloods or the lost last session of Carboplatin? I doubt if I’ll get a responce from the team but I’ve given it a go.

Good luck.

I agree and would also be asking why 50% chemo and why they can't start you on a higher dose (if not 100% then maybe 75 / 80%) and see how the first treatment affects you - unless of course they can give you a detailed reason for 50% from the start and some information regardingthe efficacy of this 50%.

I had docetaxel last year, the side effects build as you progress and in my case the dose was reduced a little in the later stages, then my 6th and final dose was cancelled due to increasing side effects. My consultant felt that the treatment would still be effective without the 6th and final dose.

All the best,

Derek.