Hello Tim

im sorry to hear about your friend and your own situation. My first thought is, could you get a second opinion in order to see if there are any other options for you to consider?

My second thought is to wonder what the ‘different, more aggressive chemo’ is and what are the potential side effects?

Once you have the answers to these you might be better informed and ready to take the option that feels the most appropriate for you?

i am, though, also wondering whether you have family or friendship support in this journey. I think the medical professionals are sometimes so engrossed with the science of the illness that they forget the patient and family experience of it.  It is with the experience that we all need help, too,

please remember that this forum is here for you at times when you ‘spiral downwards’. We are all at different points on this journey but we all experience those moments when it all seems too much and are here to support each other 

I hope you get some good news soon - it seems you are overdue some! I send you my very best wishes and a big hug for those ‘down’ times xx

Hi TimR123 & Mr U , I have tried to post previously but my entry has been removed.  I recently watched a blog from PCUK about a massive new study that they are sponsoring (£42m).  As part of the clip, which I wanted to forward to you two, the amazing Prof De Bono mentions a trial called Aspire which is looking for men whose PCa has become hormone resistant.  There are entry criteria but just wondered if you (or your teams) were aware of this.  It looks like they are currently recruiting.  The trial will be national and isn’t just London based.

I have asked PCUK if I can give a link to the video but they haven’t given permission and asked me to hold back until it has been approved by them.  In the meantime anyone with HT resistant metastatic PCa, with a rising PSA, might be able to locate it (beware that there seem to be lots of trials called Aspire).

Thanks for the info David2017 but I think it’s passed me by but that won’t stop me asking my team Thursday.

Hi

The chemo they are suggesting is Carboplatin and etoposide. I've looked but can't find any information on how effective this is against liver meats. I was hoping to restart the lutetium therapy but was told on Friday that not all the lesions were emitting PSMA so they've stood me down. I'm really frightened now. It's been  7 weeks since I last had any treatment. It feels like noone cares. I have no family support so I'm all alone in this.

You’re not totally alone because we are here.

We are not just here for the technical stuff but the touchy feely too. So when you’re feeling like there’s nobody listening give us a shout. We can help. We are standing shoulder to shoulder with you through the pain and suffering and will hopefully ease your troubles.

So lean on us

Using text doesn't seem to make me feel positive. Re-reading your profile I realise that I'm so much better off than so many who are on this platform but, in a way, that just makes me even more lonely. I'm having really dark thoughts right now. 

Hello Tim (TimR123) 

I am so sorry to read your post. If you have not had any treatment in 7 weeks you need to contact your team to find out what's ging on - if need be have a word with your hospital PALS (Patient Advice and Liaison Service) who should be able to push things along.

If your hospital has a "Maggie's" or Macmillan office please do contact them for support locally. Please do call our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week) They will offer help and support as well as being a "listening ear".

Best wishes - Brian.

Please talk to someone, me if you like.

The dark thoughts are part of our lives and keep ebbing and flowing while we struggle to make sense of our situation.

Ring the MacMillan help line or Samaritans if you are really feeling bad.

What brought today’s mind darkness on?

Hello Tim (TimR123) 

My last post crossed with yours - please do call our support line - they are there to help. No one should travel this journey alone.

Would you like details of our "Buddy Scheme" where we can find you someone to chat with every week? It can be about anything, your journey or life in general? We are all here for you.

Best wishes - Brian.

Hello Tim

I’m afraid I have almost no knowledge of chemotherapy drugs. However, I did a bit of a search and see that MacMillan have produce a fact sheet on Carboplatin and etoposide.

This led me on to thinking about the MacMillan helpline and medical support telephone service. I know Brian ( Millibob) often posts the number here and I think it may be 0808 808 00.( I’m sure Brian will be along soon to confirm or corrects)

My thinking is that hopefully you will get good support and the information you need from MacMillan to help you make a decision.

I’m sorry that you are feeling so alone in this but, as Mr U says, there are plenty of us hanging around on this forum to jump in a say a few kind words, to offer support and friendship and to show we do care about you. Indeed, you are far from alone

Do let us know how you get on? We do care! I send you a big hug x