Hi everyone
not entirely sure if I have secondary breast cancer or a regional recurrence. Oncologist not sure either. A bit of history - Oct 2007 diagnosed with breast cancer. Had WLE with sentinel node biopsy. Then needed a further WLE and full axilliary clearance 5/20 nodes affected. 6 lots of chemo. 33 sessions of radiotherapy. Triple negative so that was the end of treatment. 2 oncologists said I was cured. Thought that was it.
May 2008 - overnight a huge lump appears on my chest. Turns out to be BC in breastbone but oncologist is not sure if it has crept into the bone via the blood stream or has started in the mammary glands in the centre of the chest and has gone into sternum that way. Get results of CT scan tomorrow to tell one way or another. However, they have started treatment as it will be the same whatever it is. Am on Gemcitabine/Cisplatin. Day 1 - both. Day 8 - just Gemcitabine. week off. Day 21 - back to above. 3 week cycle. I have had the first round (due second on Thursday) and it is hideous. Have hardly left my bed in 3 weeks - thank goodness my parents can help with the children - the youngest is 7. They have been brill as is husband but he has to work.
Now, I have a couple of questions - does anyone else have this and have they had any other chemo drug that works without making then feel so bad…? I think there is someone called Jane RA who may have…not sure? anyway, I know most girls on here have a lot worse than this to put up with and you are all so brave…but if anyone has any advice or just comments I would love to hear them. Thanks a lot, Ena.
I don’t think JaneRA had cisplatin and gem. She had gem with some other chemo.
I had carboplatin and gem x7. Carboplatin comes from the same family as cisplatin but has less side effects. Cisplatin can be quite toxic from what I understand hence why more hospitals use carbo instead.
I couldn’t cope with Gem on day 1 and 8 as my wbc would drop and others had platelet probs on gem so they have also only had gem on day 1. I had gem/carbo 3 weekly and then 4 weekly as my bone marrow couldn’t keep up but then it was my 3rd chemo in 15 months so bone marrow pretty worn out now. I felt OK on it - I was surtprised. I got tired but no worse than other chemos and better than others. Even monthly and on a reduced dose, the chemo shrunk all my tumours except the solid one in my lungs and that just stayed the same.
Let your onc know how you are and see if day 8 really necessary or if caarbo would be better tolerated.
It’s awful with kids isn’t it - you have to keep going and it’s hell. Thank good ness for all your help and help I get as well.
Take care and let the onc know - you need to be able to enjoy your life especially as summer coming up.
Kate
Hi Ena
So sorry you have been having such a bad time.
Like Kate I had carboplatin and gemcitibine. (gemzar) As she says carboplatin is a smilar drug to cisplatin but is generally more easily tolerated in more people (though I think cisplatin has had marginally better results in some trials.)
I was supposed to do carboplatin and gemxar together on Day 1 and then gemzar alone on Day 8. The first cycle my platelets were too low to have the Day 8 dose. I did have it on cycles 2 and 3. By then I was exhausted and decided not to have the gemzar on day 8 and my oncologist was OK about me doing this.
My recurrence is a regional one (diagnosed in April 2007, three and half years after primary diagnosis…also triple negative like you.) So far CT scans have shown I don’t have metasteses in major organs, but I have been told my regional recurrence is incurable and so in that sense my oncologist considers me to be ‘at the good end of Stage 4…’ The dividing line between ‘secondaries’ and ‘regional recurrence’ is very complicated.
Before I did the gemcarbo combination I had vinorilbine and capectibine(xeloda). My tumours were stabilised for a short time on all these chemos but I still have them…but as I said still no evidence of major organ spread. I’m having a chemo break at the moment.
I hope you get as good results as possible from your CT scan. Also, as Kate says, please do discuss with your oncologist the possibility of missing out Day 8 of the gemzar.
very best wishes
Jane
Hi Jane and Kate
Thanks ever so much for replying - your advice is great. I have actually already seen the onc. today so cannot bring up suggestions but in the meantime she suggested that I keep to current drugs/dosage but spend 24 - 48 hours in hospital each time I have the Gem/Cis combination. She wants me pumped full of water and anti-sickness drugs to get me off to a better start each cycle…? Not overly keen on staying overnight but willing to try anything. Lovely consultant today - very approachable. She even let me delay treatment from tomorrow to Friday as my youngest is 8 tomorrow and I would not have seen him at all, apart from 30 mins in the morning…
The CT scan was not conclusive as to how cancer reached the bone but I don’t suppose it makes a lot of difference. Tried to get Onc. to come up with a long term diagnosis but she said it is difficult - let’s see how the tumour does (4.2 x 3 cm, not sure if that is big or not) first and take it from there. There is a question mark over radiotherapy - I am keen as I think the chemo must have failed in the first place and as the tumour is just outside the site of the original radiotherapy it must prove the radio did the trick (?). Again, I have to wait and see how tumour does. My friend is a theraputic radiographer and she says the sternum used to be routinely given radio until they realised it damaged the heart.
If, however, hospital trick does not work I will suggest I miss Gem on Day 8.
Hope you both are going along ok - as well as can be expected.
Ena x
Ena - hope you did manage to enjoy your son’s 8th birthday. My youngest is 8 as well. It is all very scary.
I don’t think a CT scan could show you how a cancer spread and I don’t think it is worth worrying about how it spread but concentrate on the treatment side and symptoms of things. You could ring the ask the nurse service here though.
I would hate to be in hospital for 48 hours each cycle especially if that is 2 out of 3 weeks. I think I would be tempted to go down another route of dose reduction or missing day8. The oncs told me it was the carbo doing most of the work on the canver and the gem just lowered the immunity and platelets.
It doesn’t help when the medical fraternity don’t agree does it.
Hope you are feeling OK
Kate
Hi Ena
I haven’t had the chemo that you are on but I am triple negative, there aren’t many of us around. Mine also started in my chest but unfortunately had spread to my liver and my lungs via my supervascular node. There is a triple negative site that i sometimes go into as well although a lot of the people on the site are Amercian and the treatment is very different over there.
I have a 9 year and a 6 year old, I am still managing to work as my job requires me to sit on my bim a fair bit. I am at my work at the moment -it’s difficult and tiring however I personally needed it mentally. My mum lives directly over the road from me which has proved invaluable in helping out with the kids - I’ve just stopped taxotere and am waiting to go on a trial. Taxotere played haveock with my nails and my mum had to come a do the girls hair in the morning because my nails were so sore etc it really has been a blessing I don’t know what I’d do without her. My husband and mother and father in law are equally as fantastic and I have to say I have been truly blessed with people who care about me and want to help. I really don’t know what i’d do without them all.
Hope you feel okay Ena, and if you ever want to talk to a fellow triple negative then I’ll be here.
Lots of cyber hugs
Diane xx