Watch and wait - update

[meboo]

Sorry everyone - I had updated my post on the question of whether to watch and wait, but it seems I didn't actually manage to post it!

You may recall I posted about my Mum, who was told be a registrar that she would go on second line chemo, even before they had ordered the scan. The scan was meant to take 7 weeks (non urgent), but it came through as a 'cancellation' in 10 days. We think it was a cancellation, but do you all find that you over think everything? Is it really a cancellation, or was it a gentle urgent referral? As a result of that, she was back with he Consultant just 3 weeks after the previous appointment.

The Consultant confirmed she would be going on Carb/gem immediately. We asked about watch and wait, and he explained that whilst it was a legitimate policy, it was not his preference. Mum had a clear scan in Sept and now has 4 tumours of 3 cm each, and so with that speed of growth I think we are happy that she is going back on chemo anyway.

So, to feed back to you, it seems that the registrar was right that this team don't do 'watch and wait', but actually in Mum's case I have a gut feeling that immediate chemo might be the right route. As a bit of further info, she had Avastin until August and a clear scan in Sept. We will never know where she would be now if she had carried on with Avastin as her CA125 started to rise in Oct.

Finally, can I have honest feedback on ladies who have had Carbo/Gem, particularly as second line? Thank you all.

[Lily-Anne]

I think watch and wait depends on every different scenario. Before I started chemo carbo/ gem was offered to me consultant pointed me towards research on NCI to read before I decided. Because of my poor kidney function it was decided not to use gem. Good luck with your mums treatment

LA xx

[meboo in reply to Lily-Anne]

Thanks LA - I agree that it is scenario dependent. I think in time OC will be divided into different diseases in the way breast cancer now is, and that there will be more education as to which techniques are suitable for each variant (just as BRCA is starting to be treated differently from non-BRCA).

I'm off to look at NCI - haven't done that before - thanks! x

PS - I do hope that your treatment is being kind to you

[Hidden]

I've got one cycle left of carbogem 3rd line.

It's the 4th chemo I've had and in many ways has been the most tolerable.

It's a bit of a bind having to go back for the day 8 gem, but I think this regime is because the dose of gem split across two weeks is more tolerable.

Both the drugs are quite short to administer.

The main difficulties for me have been the impact on the blood counts, which I've suffered every time I've had carbo. Gem adds to it.

The GCSF injections I've had (2 days 5-6 and 3 days 11-13) have worked well and largely kept the counts up.

I've been following an iron-rich diet, but have still needed two blood transfusions (though I suspect I'd have avoided the first if I hadn't been hospitalised and had surgery) because my haemoglobin was too low (it's never very high). I felt like a new woman afterwards.

I developed sensitivity to carbo in 2nd line. Not everyone gets this, but it is also not uncommon. Make sure your mum keeps the chemo nurses informed of any reactions she has and how she's feeling. They were brilliant at managing it and I've been having it this time on a desensitisation regime.

Some friends on here have struggled with it, so I hope your mum turns out to be like me!

[LittleSan]

Hi, I found Gem/carbo/Avastin tolerable as second line in the main except for the fact that it floored my neutrophil count. I had to drop day 8 after three rounds and have filgrastin injections for five days after each infusion. My hair thinned considerably but never enough to need a wig. Other than that, the main problems were just the usual fatigue and nausea.

The regime was successful in shrinking multiple tumours to almost nothing and I am now 12 months post chemo and the disease is still stable.

My best wishes to you and your Mum.

Sandra x

[meboo]

Thank you Mac27 and Sandra for your replies. For-warned is for-armed ! I will look out for side effects, as the issues with blood count are not clearly set out in the hospital leaflet !