Thanks Billy. It really is a nightmare at the moment. Finding this all overwhelming. Thanks for responding and your kind words

julie

Hi Lulabelle,

Crikey. You've been through a lot of rubbish!

I think your attitude is so strong!

I reckon the meditation really helps, but I'm not sure about the stuff that your oncologist wouldn't approve of though? I was in touch with a well known doctor once, a long time ago now, who was doing dome studies which weren't quite mainstream, and he said to me to carry on with the mainstream medical stuff until everything else fails. He wouldn't take me on his study because he wanted me to pursue everything properly through my proper medical team first. Also, other things I might have done might have excluded me from mainstream clinical trials, and I couldn't risk that could I? I have learnt to trust my medical team to advise me in this now and everything I do is with their full support.

Having said that, there are things that I have done that help me feel more in control:

Healthy exercise and diet, reducing refined carbs, replacing refined food with wholesome things, mindfulness meditation.... there are loads of things that don't clash with my medical treatments.

Good to hear from you, but I'm sad any of us are in this "club" at all :(

Xxxxxxxxx

Mary 

Thank you for your response Mary. As you say it is the club that none of us want to be in!!

its so positive to see how well you guys on this thread are doing.

I think that's the issue due to my professor and her team being the ones that under treated my I've lost a lot of faith but hopefully we can work through this and turn our relationship around.

Maybe that is good advice my only concern is the speed TN can turnaround at and I don't want to miss a window to extend progression free survival. I will speak to the professor in a couple of weeks so will as before I do anything. 
 

There are new treatments coming to light for us all on a regular basis so your right it's important to not take anything that could jeopardise that! I don't know if your the same but I research treatment options a lot to keep ahead. I have skin mets and have found a targeted treatment regime for if the immuno/chemo doesn't sort it out. 
 

lucy xxxxxx

Hi Lullabelle

It's not club any of us want to join is it?

Well done you for being so proactive in doing all you can to research the best possible treatment for yourself - I admire your reliance at such a tough time

Please continue to post to keep us updated if you feel able to.

We must all hold on to the fact that great strides are being made all the time in secondary breast cancer research and even in the last 5 years we have access to drugs now that we would have not had had then.

Rooting for you all the way

love Julie xx

Hi Julie,

it's absolutely not I hope there comes a time where no one has to join!!

I just realised my medical team aren't that invested in my outcomes I'm one of many which is fine they have a job to do so it's upto me to keep ahead of the times and ask for everything or do it myself where I can. We all respond differently to different treatments and have different tumours, metabolisms, immune systems, body's and minds which will all effect different treatments. 

Exactly I mean who would have thought even five years ago immuno would be available for breast cancer especially TN or that stem cells mixed with immuno is even in a trial form at Yale and could be a possibility as a second or third line treatment in metastatic cancer. I spoke to my aunt about it today and she said it's like something out of a sci fi film! 

I will keep you all posted I have my first scan in just over a month to see how it's all going so all the positive light going to that!!!

Love

Lucy XX 

Hi Lucy

 I wish you the very best with treatment and your next scan

love Julie x

Hi Mary. 

I'm being messed with here with my new meds.i was told have a blood test three days before i finished my 28 day course i got dates wrong did it early but doesn't matter next day I should phone up and order next lot to be sure i phoned up day early told I'd get callback nothing,.

Tried next day nothing last day of tablets tried calling again no call back, tried next day reminding them I'm out for tablets nothing, yesterday tried again kept phoning explained weekend coming up finally got a call back saying tablets ready at chemist BUT nobody to deliver them can i pick them up. So had to go round friends and neighbours asking if someone could take me because i as feeling rough. Then find someone to look after bren got sorted,

Got back home 6.30 with tablets "hurrah" started second session two days late, so going to have to get something sorted for next time so it doesn't happen again..

Hope things are going well with you Mary. I know sometimes nothing going on so nothing to write, 

Oh nearly forgot i like tomatoes. And sometimes there's odd seeds in the washing up water when i throw it on the garden this year I've got eight two foot high tomato plants with loads of flowers and six baby Tom's up to now, only trouble it's front garden anybody can see them and pinch them but so far so good. 

Keep positive and keep fighting and keep safe. 

Love Billy xxx 

Hi Billy.

What a pain to have to fight with medication mix ups and blood tests etc. It's not a time any of us want to be traipsing around with all this Covid stuff going on is it!

I'm glad you've got people locally who are willing to lend a hand when you need it. I bet things can get a bit tough what with looking after your wife too.

Things here are going well thank you. My recent scans showed that my disease is still stable thank goodness!

I love your tomatoes story, it makes me laugh! Gardening (and growing herbs) is one of my favourite things to do whenever I can. I hope you're enjoying this spell of sunny warm weather?

Carry on carrying on my friend, 

All best wishes to you from here,

Mary xxx

Hi Mary 

Spoke to my oncologist wed, I've been struggling for a couple of weeks blood pressure going low can't eat or drink much before I'm full, light headed. 

I said is it new tablets straight away she said no it's my steroids for my addisons,. I felt a right idiot, I'd had these problems before but with just starting these tablets i forget about it, anyway checked with Dr and specialist both agreed increase dose which i have and getting better slowly. Cancer count is much better but she wants another bone scan and Mri to double check. 

If i could I'd kick myself. 

Really glad about your results, did you celebrate. 

Love Billy xxx