Hi
I was DX with IBC in august 2008 and was beginning to think I had this disease licked, when last week I was told that I had secondaries to the bones lungs and liver. The surgeon was as amazed as I was devestated. He only ordered a CT scan because I was quite insistent.
Next week I start on Vinorelbine. My question is the onc says it gives very little side effects but the leaflet he has given me lists all the problems I had on my initial chemo 4 years ago. Please could someone who has been on the regime tell me what it is really like.
My world has just come down around my ears. Having not been on the forums much just lately I suspect I will be here quite a lot trusting you lovely ladies to give me help and advice.
Thanking you all in advance
Andie
Dear Andie
I am sorry to read your news, I am sure your fellow users will be along with support and information for you very soon. Please don’t forget that you are able to call our helpline to talk anything through on 0808 800 6000
I am posting a link to further support and information which you may find helpful over the coming months:
breastcancercare.org.uk/secondaries?utm_source=Homepage&%3Butm_medium=help_you&%3Butm_campaign=secondaries
Take care
Lucy
Hi - I dont log on much either but have tonight and so spotted you - a fellow IBC-er… I’m so sorry about the shock you have received and the fear of the unknown you face. I had secondaries right from initial IBC diagnsosis in 2009 and am still here! I’m afraid I havent had Vinoralbine so cant comment on it specifically - have used up all non-chemo treatments and am currently on Capecitabine oral chemo. I just want to reassure you that “it aint over yet!” and hope that others with more specific experience of the treatment your Onc is suggesting, come along to help you.
Hi Andie,
So sorry to hear you have joined the very select bunch of 2ndaries here! It might be an idea if you make the post again in the Living with Secondary breastcancer section of the forum - or if the moderator will move it. Quite a number of the secondary members only look in that particular section, so I think you would get more replies there. I don’t have the same dx as you, mine is very extensive bone mets which I was dx with in 2002, after a primary dx in 1990. I did have vinorelbine in 2003 and found it very manageable but it was the intravenous one. Generally these days they us a tablet form - do you know which one you are having? What made you insist on the surgeon ordering a CT Scan. Although no one wants this diagnosis - what a good thing you did insist. I hope you will get a few more replies - but as I said it is worth posting again in our secondaries area.
love
Dawn
xx
Hi Andie,
Sorry to hear about your secondary dx, I was the same as Haxted and had secondaries on my liver (although they were never quite sure, but did disappear after chemo so it was thought it probably was) at dx for IBC in March 2009. In August 2011 I had a routine scan and it had popped up again on the head of my pancreas. After a couple of edoscopies it was confirmed and | started a weekly trial with vinerolbine and Placebo/Everolimus. I stayed on it for around 6months. The side effects of vinerolbine arn’t too bad. I carried on more or less as normal, make sure you get some Difflam mouth wash as you can get mouth/tongue ulcers. Hair went a bit dry, try a deep treatment conditioner once a week but I didn’tlose it . I read up on the SEs and found out that your veins can really suffer, as I have only one arm that could be used, as a lot of people I had mx and lymph clearence, I asked for and got a porthcath fitted, well worth it, makes life a lot easier! Health care at home use it every 3 weeks for Herceptin now. I finished in July last year and I’m now on 3 monthly checkups and 6 monthly scans - so far so good,infact last scan showed shrinkage even after treatment finished - due another one soon - fingers crossed - I feel great full of energy and love my food,maybe a little to much!! lol! I hope it goes as well for you. xxx
hi andie t, i was dx with ibc in sept 2010 then dx with secondries in lungs,chestwall,lymph node opposite to breast cancer side plus inthe breast skin this was in 2012 match. since then i was started on taxol for 5 months first scan showed good results, then second scan i had was all clear, then i was switched to capcitabine but had proggression then switched to vinorilbine and currently stable on this no side affects apart from very slight fatigue and feeling well, i am also her2+ so also having herceptin every three weeks. good luck with your treatment and very few side affects for you. xx