Sad, angry, tired...

[Liz2011]

Scan this morning following terrible blood results last week (liver enzymes through the roof, CEA increase) - and confirmation that the tumours 'have grown'. All the radiologist is ready to say. No mention of how much, nor whether there are new tumours. And the meeting with the onc isn't for another 10 days!!! Why, oh why, deliver such news in such an insensitive way, when it is someone's life they're dealing with!
So we're left facing a treatment (vectibix) that only has 60% chance of having 'some' effect (we don't have the KRAS mutation) which is being given by itself - without any explanation as to why.
Given the situation I would like them to throw everything at mum (she's ready for that) - folfiri after 6 rounds reduced the tumours by half, why can't we try this again? Or at least give her some irinotecan together with the vectibix?

I am sick and tired of these uncertainties, sick and tired of these doctors.

I have just sent her onc an email to explain why we're so fed up. Bet he won't get it though.

[jmarie]

Why on earth would they tell you that much info and them make you wait for the full report? That is ridiculous! If it were me I would insist on seeing the doc or at least talking over the phone. Or at least get a copy of that report. If I have a scan while my Onc is on vacation one of his associates tells me the results. I see no reason for them to make your Mom wait so long. Who told you that the liver tumors grew?

If Folfiri was working why did they switch her to Folfiri?

I am sorry you and your a mom have to go through!

[Liz2011]

Thanks Jess
It is indeed ridiculous - the radiologist told her the tumours have grown, then she was given the scan (just the pictures, no report attached). It seems to be the way it's done in France. They also make you pick up the blood results yourself and you have to wait sometimes a whole weekend before seeing the onc.
Folfiri worked to start with, but she had a tough time with it and went to every 2 weeks to 3 weeks - after round #9 it had stopped working.
She's had 4 rounds of Folfox and Avastin and CEA decreased at first then increased again (and liver enzymes are really high), hence the scan...
Vectibix alone now, although we don't know if she's a KRAS mutant or not.

It all seems a little on the thin side to me.

[Deirdre]

Oh Liz
So so sorry to hear this. It is dreadful. Things certainly aren't multi d in Europe the way they are in the States. When people are in hols, there doesn't seem to be others to support. Everything is v v disjointed here in Ireland. I'm so sorry your mumhas only got one piece on info when she needs the full pucture. Hope you get that v soon
Take care
D

[Mona]

How they could do this to a cancer patient. The radiologist never speaks to me, I can get all my reports but after I see my doctor not before. If I will be you I will demand to speak with the doctor even on the phone and got that report so you can compare with the previous one. So sorry your mom and you have to go thru this heart less situation.
Much love,
Mona

[Liz2011]

I got a reply, and a fairly awkward one unfortunately... Not very good at delivering bad news, obviously (in the wrong job maybe? )
It looks like Vectibix is the last option he is willing to explore, even w/out the mutation. So if we knew that she was mutant, he wouldn't offer anything else.
No mention of clinical trials with it either - maybe mum is too far gone to qualify for a trial? She is still in good health though, for now.
I want us to get a 2nd opinion, even if it feels very desperate at this stage - I don't believe in a miracle anymore of course, but if we can find a way of giving her more time... As 1st line this onc didn't give mum Avastin with the Folfiri, whilst this second onc said he would have done. So they don't always agree. Maybe this other doc would want to try something else again, something more aggressive?
I wonder how long she's got left - will she even be with us for Christmas? I know I shouldn't, but I can't help it. And goodness me does it hurt.

[Lee]

I am so sorry this is happening. Having to wait so long is wrong. Have you considered getting a 2nd opinion, especially at a major cancer treatment center. Many times they are on the leading edge of new treatment options. Something to consider.

(((HUGS))) to you and your mother.

Lee

[Mona]

Yes, to second opinion. Please do not give up yet. Praying for your mom and you.
Much love,
Mona

[barbara jayne]

Hi Liz
I'm so sorry you're in this nightmare situation I've never come across results given out by different departments like that without seeing your oncologist, its incredibly distressing for you all unbelievable!!!
I think a 2nd opinion is in order now, are you in France yourself? if you're managing all this from the UK you must be tearing your hair out !
I hope you get some satisfaction soon I really do.
Love and warm thoughts to you and your Mum.

Barbara x

[Liz2011]

And second opinion we will get! I have also asked mum's onc to get in touch with the Cancer Center in Nantes (meant to be one of the best) to see whether there is a clinical trial she could join.
In his defense her onc spent half the day replying to my emails, and I finally got answers to my questions. Not optimistic at all - he's talking about comfort mostly now - but I want us to give a trial a shot if we can. My mum says she's ready to try anything, she just doesn't want to die...
This is really, really hard. Thought I was somehow prepared for this but I am so not - suppose I was still hoping for a miracle...

Thanks for all the kind words and encouragement.

[beth568]

I'm so, so sorry. Not easy to get discouraging news in bits and pieces like this, or to have to dig around for the answers. I'm impressed by your mom's spirit, though, and her willingness to keep fighting - there's got to be something good in that.

I hope a second opinion will give you some more information and more options. It's not quite time to give up yet.

Big hugs to you and your mother. You will get each other through this.

[pbyers]

I am so sorry you and your mother have to go through all this. My thoughts and prayers are with you both. Don't ever give up.
Hugs
Pam

[shabbysheep]

Liz,
Excellent you are on the road to a new opinion. Stay strong, sending hugs and hope,
Shabby Sheep

[shabbysheep]

Liz,
Excellent you are on the road to a new opinion. Stay strong, sending hugs and hope,
Shabby Sheep

[Liz2011]

You're all amazing people. Thank you so much for your kind words, it means so much.
Yes, Beth, my mum is up for anything they throw at her, she has such an appetite for life - she is so brave yet she has no idea she is.
She adores my 2 boys and wants to see them grow up, and it breaks my heart to think that my boys won't get to know their 'mamie' well.
I will hang on to the little glitter of hope that we have left. Promise
Liz