You seem to be on same treatment as me with same type of cancer, Trip Neg, would love some advice or guidance
Hi Christina
Yes I’m on the xeloda and navlebine combination. As you’ll know from another thread yes I did have 3 very bad days on it cycle 2 with chronic diarrhoea, nausea and exhaustion. My xeloda dosage has now been reduced and this cycle I haven’t had (touch wood so far) such a bad reaction. I’m finding the side effects more unpredictable than AC or taxotere and though I’m not completely knocked out for 4-6 days as I was on those drugs I am finding it quite hard. I’m OK during week 3 (have navelbine intravenously on Day 1 and Day 8, and take xeloda in tablets days 1-14), but on many days during week 1 and 2 I am incredibly tried and listless and this does get me into a cycle of ‘what’s the point of it all’ depression. But some days just bounce back and feel fine. I took early retirement after primary diagnosis and though I had a part time job before my recurrence I’m not going at the moment. I’m lucky that I have a pension and no financial problems. I am fit enough to work on some days but choose not to cause I have that choice and would rather spend my time doing other things.
I was diagnosed In Oct. 2003, had 6 cycles of AC, then surgery-mastectomy and lymph node clearance which showed cancer still active and in most of nodes. Had taxotere and rads. Yes I’m triple negative.
I was well and in remission till April 2007-I found a lump about my shoulder bone which turned out to be a supraclavicular node with cancer. Cancer also found in various parts of my chest wall. Surgery not deemed possible and I can’t have rads again in the same area. No evidence of disease in major organs.
I was rediagnosed in London where I had a very good onc. who has always been very upfront and honest with me. He defines my regional recurrence as Stage 4 (‘albeit the good end of stage 4’) and this means its not curable, but ‘we’ are hoping for management for a while. He reckons that I probably won’t go into total remission again, but hoping for longish time of partial remission. My shoulder lump has disappeared but there’s still evidence of cancer in my chest wall. Will be scanned after 4 or 6 cycles. The London onc said I would have 6 cycles of the combo and then stay on xeloda as a maintenance for as long as it works. I now live in Hampshire and my new onc might keep me on navlebine longer. I will probably continue to use old onc as second opinion when I get through this part of the treatment plan. There are relatively few options left if/when it fails (probably carbplatin/cisplatin, gemzar and possibly a taxol again.)
I’ve found getting my head round the implications of my re diagnosis very hard. Having a poor prognosis I was not unprepared for a secondary recurrence, but knew virtually nothing about regional recurrences. There is very little written about them and they often get lumped together with less serious local recurrences. I do accept that my cancer won’t be cured, and like people with metatastic disease I know that management and control for as long as possible is the aim. Its tough.
I don’t use the private messaging service on this site because it doesn’t feel very private to me as moderators can read your messages, but I also use another board bcpals.org.uk where you can contact me through their system.
The key question I asked my oncologist when I was rediagnosed was: “Do you consider this stage 4”. Then we were able to have a discussion about the implications for prognosis. I have also talked to my chemo nurse about what could happen if the regional recurrence can’t be controlled and there were still remakedly no spread to major organs. I’ll save that detail for another time. I’m someone who can’t bear evasion and likes to know exactly what the implications are. Problem with cancer is that non one can be exact so uncertainty is the name of the game.
Its hard stuff bl***y cancer. Thinking of you as you start your treatment.
Very best wishes
Jane