Hi Mary, I am doing rads as I ended up having a local secondary in my sternum.... so radiation was brought back into the equation. 13 down, and 12 to go.
I had a very big day yesterday as I paid $7000 to have a tumour profiling done (as they were saying I didn't respond to chemo last time) in America and I went to the oncologist to have the report explained.
After speaking with the oncologist yesterday, I just feel I need a 2nd opinion. I am going to organise an appt with another oncologist (who has a particular interest in Triple Negative) here in Brisbane as my oncologist ideally wants a wait and see approach (ie: wait for another secondary to then see if chemo responds or not). But in saying that is happy to go with what sits right with me, I just need another oncologist to proove to me that their thought patterns are the same or not. So based on my headspace, and much deliberation I will probably going to go with the following plan:
1. PET scan on last day of rads to ensure I have avoided another secondary whilst having radiation treatment (so I can return home with peace of mind)
2. Go home with chemo tablets called capecitabine (zoloda) - side effects: dirreha, red hands and red feet which they can then lower the dose of to counteract this side affect (for 2 months initially) NO HAIR LOSS AND NO NAUSEA yAY, but because this drug is in the same family as the Fluorouracil (which was the part of the FEC that I had)... they are just not sure I will respond as I didn't respond to chemo last time.
3. Have another PET scan and CT scan 6 weeks post rads to see if Radiation did its job
4. Maybe start chemo at this point (Carboplatin/Gemcitabine) at which time I will need to reside in Brisbane/Mackay or Rockhampton for 4 cycles due to low red blood cells and platelets which could require a blood transfusion and delay of chemo if (platelets are too low. 2 chemo days in a three week cycle. Third week will be the week of neutropenia as they won't give me neulasta 2nd diagnosis :(
OR
I could continue to drag out chemo with having a CT / PET scan every 2 months... will just see how my head space is with this. I guess if I go this way.. they will get it early?? Not sure I will do this, I need to be proactive, but they just can't guarantee the chemo will work and they have nothing to guage the responsiveness on as the tumour in my chest wall and sternum should be zapped with rads and the rads oncologist said today that there was no way of knowing if there is residual disease in these areas as long as it is no bigger and that is all they can check due to scar tissue issues in these areas.
I think I feel ok with this plan, but I am definitely not waiting for another secondary before they bring out the hard core chemo... I will always kick myself if I could have done more to eliminate more spread, but definitely respect that they have nothing to gauge the response of chemo on. Its a hard one.
They haven't mentioned Avastin on the report and my oncologist wants me to ask the question to the people I organise the tumour profiling through to clarify why as there is evidence to suggest that Avastin is helping triple negative women with secondaries. So I will find out about this.
Also the drugs that are left on my “Potential Benefit” list are Everolimus and Temsirolimus and unfortunately are not on the PBS... so these would require me to pay for them, but again is something that is an option with the fundraising my home town are doing for me.
I still have surgery as an option too... before being diagnosed of a secondary they were considering taking out three ribs in my chest wall and reconstructing... but this would be done way down the track but I know I have it up my sleeve if required.
So I still have options and for that I am happy.
These oncologists don't believe in their medicine esp when it comes to triple negative. She said today I have such a high risk of reoccurance / secondary again and it is only a matter of when not if... grrr
I feel so happy to be able to go home and get my youngest son off to Prep, as I am currently 12 hours drive from home doing this radiation treatment. To go home on chemo tablets with minimal side affects and be involved in that process... even though they aren't sure it will work, I will feel like I am doing something.
This will give me time to work out where I will reside to have chemo... so this is sitting right with me for the moment... my decision!!! and ultimately that is all I wanted in all honesty.
Thanks for asking Mary xx
