Sorry you are having such a rough time at the moment hope things start to improve soon.
Think you asked awhile go if I had breast cancer before. The answer is no. Got breast cancer and bone mets at same time age 57.
Thank you for your reply regarding your journey living with this horrible disease.
On the whole not doing to bad thank you for asking.
Main side effect on Vinorelbine is joint pains and feeling tired for a couple days after treatment . With taking the tablets weekly I don't get chance to rally around before next dose. I am due to get a CT scan back end of September by that time I would have had 11 doses at 110mg each dose.
Thinking of you, you’re certainly having a tough time of it. Hope the treatment your Onc is proposing is successful and the side effects are kinder than you’re expecting. Kate xx
Sorry for taking so long to respond, thank you all for your replies.
Shelly, I hope that you are getting on well with taxol. I found it to be a kind drug and tolerated it very well for 12 (I think) weeks with primary 5 years ago, and had 2 cycles of 3 doses back in March/April. Unfortunately it didn't work for me, fingers crossed for you, I've read on here ladies who have been on it for 5 years plus!
Clinical trials - I've been turned down because of the amount of treatment I've already had over 5 years. It's a difficult one, but if a drug works for me how do they know that it's that drug on it's own or in the combination I've had? They need to test on people with a similar history unfortunately.
I saw my oncologist on Thursday, the latest chemo is not working for me so we really are scrapping the barrel now. He reckons my liver has 6-8 weeks if it remains unchecked. I've had blood tests and see him next week and possibly go on to vinorelbine which has a lower % chance of working but with more intense side effects.... but we'll give it a go.
Linda, I've seen the same oncologist for 5 years and whenever I've seen someone in his place I've been disappointed. I saw a different (junior) onc a few weeks ago before the start of my last cycle, and was shocked and disappointed by her consultation, lack of empathy, failure to listen, and much more. Because of that I pushed to see my onc asap - he stopped chemo, brought my scan forward and hence I saw him this week, he also agreed with me that the letter (consultation and clinic notes) from the other onc was not fit for purpose. She's basically wasted several weeks and subjected me to unnecessary chemo.
I've had 2/3 separate cycles of 3 drugs so far this year: paclitaxel 3 x weekly doses then a week off, eribulin 2 x weekly does then a week off, Carboplatin once every 3 weeks. I don't know what the frequency will be for vinorelbine.
For now I need to get nausea under control (liver and bowel mets).
Linda, I managed 3 years "clear" after my primary diagnosis in September 2014. Bone mets confirmed dec 2017, but who knows how long they were bubbling away for before being spotted? Then spread to abdominal cavity jan/feb this year.... rapid deterioration from there. How about you?
Time to get some sleep xx
Hi Hun, I think that is shocking you've been turned down for trials, isn't that the idea of them. You should ask for a second opinion, your entitled to one. Hope everything turns out for you. Take care. Lots of love Shelly.xxx
Hi Lynda, thank you so much. Had treatment today and so far so good. It's just this ascites is driving me mad. Had it drained 2 weeks ago and they got 10 litres. It's come straight back, I can't hardly breath, I'm hoping when I finally get an appointment they put a drain in that can stay in.
How are you? Hope everything ok.
lots of love Shelly.xxx
So sorry to read your last chemo does not appear to be working.
You mention you have had 3 different chemos were they one after the other? Your oncologist does appear to be on top of things with scanning after 3. You would think though that he would have someone to stand in for him when he is on holiday.
Can't remember how long you have been on this journey living with cancer. It is gone 10 years for me. I have had 3 IV now on a second chemo in tablet form.
Fingers crossed things are not as bad as you fear and another treatment can be tried.
I am so sorry Riversidedown and Shelly10. It must be scary. I hope the treatment will work for you for so long, until something new is introduced.
I am surprised trials are not available. I thought that in the first instance they are offered to those who have less options left.
Thank you for writing about it. Maybe it will be easier for the rest of us when we get to this point.
Sorry to hear this Shelly, but hopefully this will be the drug for you. I'm nearly at this point too. I've tried 3 chemos for 3 cycles followed by scan.
I saw my onc last week as I can feel lumps in my abdomen, he organised a CT scan but I cant see him for 2 weeks as he's on holiday. He also cancelled my 3rd cycle due next week as no point if it's not working - so from that he agrees with me that the lumps are more spread otherwise he'd push on with chemo.
We've tried the most effective IV chemos, so now it's working through some tablets and potentially hormones to see if anything can help.
I've been turned down for trials because I've had so much treatment already.
Thank you turtle.
so do I, hope some trials come up. I'll try anything.
thanks for posting, take care love Shelly.xx
new drugs are being introduced all the time i hope that the chemo you are on lasts until one of the new drugs will be offered to you x
Just got a date for 23rd august to start new chemo, told me there's no more options after this one. I'm gutted. My heads all over the place.