Oncologica/Oncofocus test

Hi Gemma

Sorry to hear that your first chemo has failed, I’m not sure what breast cancer type you are or what treatment you have been on so far but yes, there is normally more than one option. 

I’ve just started number 3, so would be interested to hear anyone’s experience of this testing 

I see a team in clinic and one Dr can phrase something so you think the end of the world is near and another that there is a whole shop of options still there

Take care xx

Thanks for your reply.  I'm in on Tuesday to discuss my options so hopeflly all will become clearer then.  I'm finding it really hard to find reviews on the Oncofocus test and subsequent recommmendations.  I feel if it was that good everyone would be shouting about it!  I'll keep looking. 

Take care xxx

Hi Gemma

Ask about trials too on Tuesday xx

Gemma

I found a link to an article about a charity funding these tests for all children diagnosed with cancer in th UK, I guess the question is, if you have the test what can you do with the results, if there is a treatment that it identifies and it’s not available via NHS and financially out of reach how do you deal with the situation 

Again something to ask the oncologist

Hope you get some clarity at the appointment 

Xx

Hello - it can get very grim trying to handle it all and I can tell you that I was looking at this test for my own breast cancer but found at that time it was not suitable for me (HER2+).  At that time in 2012 the NHS did not fund it and it had to be paid for privately.  I had the surgery to remove the tumour but it recurred in September 2016.  I went to Germany for Proton Therapy (secondaries in liver same HER2+) when I discovered there were 8 tumours there (from PET/CT scan).  The treatment was very successful and I am now in complete remission.  If you have actual tumours it could possibly be treated with Proton; the clinic would tell you if they could help after they see your scans, reports. etc.  Unfortunately it is quite expensive but considering the alternative I thought it worth paying the price. My consultant was dismissive of Proton but the Macmillan radiographer encouraged me to take my own decision.

Don't give up.  There could be treatments out there for you too.  When I found out I had 8 tumours in my liver I thought I was done for but here I still am, so maybe for you there will be a suitable treatment.

Best wishes

Sheilarog

Hi all,

My oncology appointment gave much worse news than expected. 

I now have secondaries in my liver and spleen as well and the cancer seems to be spreading like wild fire.  My oncologist offered me erubucilin chemotherapy as my one and only option.  I start tomorrow.  She said if that doesn't work I probably have weeks rather than months.  I can't quite take it in.

I have gone on and requested the Oncofocus test as well.  So all being well I will share how that process goes.

Gemma xxx 

Hi Gemma

How are you doing, I hope the chemo went ahead as planned? Fingers tightly crossed that this works for you, I’m due my first cycle day 7 dose tomorrow afternoon of the same drug. 

Take care xx

Hi Gemma

I have everything crossed that this chemo is going to work for you.  Keep finghting xx God I hate this disease!!!! I'm crap at this but I'm thinking about you and really hope this chemo kicks it's butt xxxxx

Hi Gemma 

Have you asked about eribulin as that is only a 5 minute infusion and is given for breast that has spread to liver I can not speak for spleen though but it was approved early this year I have been o. It for 10 months now had a scan in August and it had shrunk all on my chest wall and liver will not know now till March 2018 if still working when I get my next scan 

Kay

Hi Gemma

Ive read this thread and I’m wondering how you are getting on?

I don’t know about secondaries in the spleen but my partner has secondaries in the liver which first showed up in a scan in March. (I mention this because they’ve been there at least 8mths and have had no effect). We’ve been told that the key is not that they are in the liver but whether the liver has started to be affected. Her bilirubin levels are still low (Under 5) even though the tumours were still growing at the last scan. 

It feels like your Oncologist was giving up on you before the scans confirmed the new mets but was this because your blood work reflected serious issues or because they are not supporting you. 

I hope you are still plodding on (my partner dislikes the word battle), I hope the new treatment isn’t knocking you about too much. 

Please keep us posted. I can see I’m not the only one cheering you from the sidelines.