Update and Trial question

[CallmeMum]

Hi my lovelies,

Haven’t been on for a while but just an update and quick question.

We saw my special persons oncologist on Tuesday surprise (sarcastically) it’s back, her CA125 is 280 were not panicking though as she’s not getting symptoms other than pain in the area so will start chemo in January just Caelyx on it’s own as she’s now classed as platinum resistant we were hoping to get to March and see if we could get 5th line with carbo but that’s not to be. So the question being has anyone gone through 4 lines with no trial being offered? Xxx

[Lily-Anne]

I was offered trials but was also advised to search them myself. AZ said sometimes it’s better to ring individual oncology departments direct to see if there are in house branches of trials not yet up for mainstream offering. He also said if a trial you’re interested in seems a long way away call and ask if you could be considered for follow ups locally this reduces your travelling.

What odds did they give on Caelyx?

My CA is also 280 but it goes up and down

LA xx

[CallmeMum in reply to Lily-Anne]

Thanks for your help LA, the term they used about Caelyx was “you liked that before so we’ll try that again”! Personally I think they’re firing a blank bullet and there is nothing else they can offer, but I get the feeling our relationship with her doctors is completely different than everyone else, as it seems more like a mother’s meeting than a doctors appointment which for my special person works a lot better than feeling awkward with the doctors, they seemed more devastated than we did that the cancer is on the move again, but we were expecting it due to the pain in her side. How are you doing? Xxx

[Lily-Anne in reply to CallmeMum]

Have you thought about pain management and watch and wait with chemo?

I’m suffering a bit with another UTI because of my bladder tumour. Pleased it’s nearly the weekend as Hubby is home. Just got to find energy to write cards

Xx

[CallmeMum in reply to Lily-Anne]

To be honest LA we’ve done watch and wait before but the problem is her bowels block and then she ends up in hospital, ideally it’ll be chemo in the new year however her oncologist wanted her in as early as next week but she wants to get Christmas out of the way first xx

[govanhill]

I was given weekly Taxol for 5th line treatment which worked for about 4 5 months. Morag

[Neona]

I only got on my trial becuse I went for a second opinion with the oncologist who runs phase one trials- I was not told they were available by my original oncologist.