More sadness....

I did ask about the PET scan, however I was told that it wouldn't add any benefits in my case, and that the CT scan was 'enough'. I will raise it again though, further down the track, because I'm not too sure about that. I've been told that the PET and CT scans are virtually the same...there is not much difference between them (just in the way they are conducted), therefore it is unnecessary to have both.....hmmm....

As for my daughter, she's doing ok. She just wants to see me well, and sometimes doesnt understand that I cant do the things I used to do wth her (continual running around etc). I am tolerating the new chemo ok so far, but do get tired, have had a tiny bit of reflux and have had a 'fuzzy' or dizzy feeling also in my head. They think this may be from the denosumab (bone injection). Anyway, I am looking forward to my week off without having to go to the hospital...yipee! Hope you are well, take care Celeste?

Hi Celeste,

Your new scarf, pearls and smile are wonderful. Surely there is some healing inside going on inside!

Love, Fiona

Hi again Celeste It's now  fortnight since you really aweful news... . Hopefully you have had may a few hours sleep... but would I reckon you haven't.  Getting the new chemo into your veins will be a relief.  ( Strange irony that the chemo can be worse that the disease itself).

Just  clarification about PET scans. They are  a more advanced, modern form of  radiographic scanning. Different tracer elements used.  Different details can be detected based on metabolic activity within the organs.  It gives the oncologists another way of looking at what is happening inside you... without opening you up!  it also give you a chance to be reviewed by another radiologist.

As there is only 1 machine in Newcastle, so i had to wait over 2 weeks ( eternity) for an appointment... but so glad I 'pushed'  for this option.

There was about 94% chance that she was correct  with the dignosis of metastatic liver disease... I was way so lucky to be what my kids now proudly claim as  their  unusual 'mutant mother'!

Funny with the medico's (like all of us) ... sometimes they have to be urged to pursue a challenge..... whereas others can be so "gung ho".  I guess either extreme can have its problems.

How is your daughter?  My 2 girls, Miss22 and Miss27 are back on their perches, at last..... I' ve reminded ( again) to NEVER to give them bad news 2 weeks before a final exam... except of course if I've died!  Got to laugh.... but the experience added another 12 months to each girls' study... But i think they are better off for the experince. They are far more aware of 'unsugared' real life. My youngest started  as a Registered Nurse last week, at last.  Her working knowledge of Chemo (and complications) is probalbly better than most of her colleages!  She scored top marks in a case study about liver disease!!!!!

Hang in there,

Cyberhugs from  Fiona

Thank you Fran for your lovely words. Yes, it is certainly an emotional rollercoaster ride isnt it? Sometimes I dont know who to trust or who to believe any more. I feel as though I am walking on eggshells most of the time now! You are right though, I am very lucky to have such wonderful women support me from afar. Take care, Celeste?

Hi Celeste, i have thought about you often, this is so cruel  this disease, we seem to get built up to believing all is well only to be shot down in flames .but Celeste you have so many women praying and sending strength to you and your family , some of this positive strength must help i am sure, take care we are all here for you.

Hi Jane, how truly lovely for you to be thinking of me...and "hello"! :-) Hope you are still travelling along well and all is good for you! Take care, Celeste ?

Thank you Jill. I know I will find the strength to fight again...it's just taking me a bit of time to get my head around this one! Thanks for your best wishes, Celeste ?

Thank you Sandy. Would love to meet you one day, so hopefully we can catch up at the next lunch (not the one on 10th Feb). Take care, Celeste ?

Hi Celeste,   I was saddened to read your post and can only imagine how you must feel.  Please know that you are in my thoughts and prayers daily.  I hope you can gather the strength you need to keep fighting and win this battle.  All the best on this next stage of your journey.

Love Jill  xxx

Hi Celeste

Are you continuing Herceptin too? I find vinorelbine a very tolerable treatment - what is your regime?  The trial has me having it weekly though i think usually it is 3 weeks on and 1 off.  I had issues initially and did end up neutropenic and in hospital for a week but we think it was a combination of the everolimus and vinorelbine dropping my neutrophils.  I had a dose reduction of both and have been fine since.  I have issues with Refluc but this is now well managed and also ulcers - but this is an everolimus side effect.  Often women get constipated on Vinorelbine - I have the opposite effect for about 12 hours after treatment.  

Many, many women have success (i.e. reduction or stable) with vinorelbine so keep that in mind.  The PET scan can determine whether there is active cancer or not - a CT cannot show this - it may still show scar tissue.  I am not sure how bone and PET's differ - but I understand if your PET is clear and your bone scan questionable then the bone scan is a likely false positive.

I am sorry that your oncologist appears to have quite a negative or ?realistic view of treatment - what about pertuzamab, TDM1, Everolimus? Just to start with and I don't even know what other hormonals are in the works.

We all have to prepare for the worst - but hoping for the best is much more fun.

Take care and keep in touch.

Amanda xx